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Latuda is off the table for now due to the weird reaction.  We were considering Depakote, but psych doc just called and nixed that idea due to my NAFLD and chronic hyperammonia issues.  So, he wants me to start back on Zyprexa tonight and to call him tomorrow to see how I am doing.  He has been calling me daily over the past two weeks.  Several neighbors are suggesting assisted living, but my psych doc is saying no way, I'm not at that stage yet.  However, my mother started dementia at my age, but his position in this is that when on Zyprexa, it cures the confusion and other debilitating symptoms at least for awhile.  He says that if I had early dementia, I would not respond to the Zyprexa as well as I do.

My neighbors are now concerned due to my inability to think straight and confusion which they are picking up on.  I have known this for sometime and have expressed my concern many times over my brain feeling like it is falling apart and unable to function in the real world.  Finally my psych doc is taking me seriously. 

Dissociation is with me all day long, extreme anxiety and fear/panic/dread all day long, confusion is there all day long, just feeling unwell with these chronic migraines is keeping me in bed 3 days out of 5 days.  This is not a functioning life for me.  I am afraid to leave my apartment, I am afraid to hear from my neighbors that I am confused and not functioning well.  These daily reports are just overwhelming me.  I now turn off my phone, close my blinds and live in a shroud of secrecy.

I will be seeing my headache/neurologist/seizure doc this week and will bring this up to him as well.  I hope I can make the appointment.

Just sitting here after taking .5 mg of Klonopin to take the edge off.  Will start the Zyprexa this evening or sooner.

Just a few points about my environment.  Two neighbor threatened my life here (verbally), neighbors that I get close to pass away suddenly (one right in front of me) (I live in an independent living facility and I am the youngest here - most have varying degrees of psychosis/dementia - hard to live with).  I went to a party last week and I sat alone at my table while others crowded around with each other excluding me.  I left and came home very depressed.  I am an easy target where I live, bullies come after me. I have no trust with anyone who lives here anymore. Have been here a year and can't connect with anyone, very depressing, so I stay alone in my apartment.   I do not drive and with my agoraphobia, leaving my home and venturing out alone is very very scary to me. 

Just not a life that I want to keep living.  I have to get on something to help calm down my brain so I can function in the world.  I have been on most medications now and nothing works or the side effects are too harsh.  It's just becoming too hard now to function in this world. 

Well, thanks for reading *smiles*

 

 

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1 hour ago, Dewey said:

Latuda is off the table for now due to the weird reaction.  We were considering Depakote, but psych doc just called and nixed that idea due to my NAFLD and chronic hyperammonia issues.  So, he wants me to start back on Zyprexa tonight and to call him tomorrow to see how I am doing.  He has been calling me daily over the past two weeks.  Several neighbors are suggesting assisted living, but my psych doc is saying no way, I'm not at that stage yet.  However, my mother started dementia at my age, but his position in this is that when on Zyprexa, it cures the confusion and other debilitating symptoms at least for awhile.  He says that if I had early dementia, I would not respond to the Zyprexa as well as I do.

Sorry the Latuda didn't work out for you. I'm sorry that I didn't read that thread, I have been in bed the past few days with depression and have just come out of that depression. That's interesting that your pdoc points out about if you had early dementia, that you would not respond to the Zyprexa as well as you do. I wish I understood more about that. I wonder if it has something to do with the anticholinergic mechanism of action?

1 hour ago, Dewey said:

My neighbors are now concerned due to my inability to think straight and confusion which they are picking up on.  I have known this for sometime and have expressed my concern many times over my brain feeling like it is falling apart and unable to function in the real world.  Finally my psych doc is taking me seriously.

Does your pdoc know why you are experiencing these symptoms?

1 hour ago, Dewey said:

Dissociation is with me all day long, extreme anxiety and fear/panic/dread all day long, confusion is there all day long, just feeling unwell with these chronic migraines is keeping me in bed 3 days out of 5 days.  This is not a functioning life for me.  I am afraid to leave my apartment, I am afraid to hear from my neighbors that I am confused and not functioning well.  These daily reports are just overwhelming me.  I now turn off my phone, close my blinds and live in a shroud of secrecy.

I'm so very sorry you are living like this. I hope your pdoc and your neurologist can find a solution for you. You deserve a better quality of life than this.

1 hour ago, Dewey said:

Just a few points about my environment.  Two neighbor threatened my life here (verbally), neighbors that I get close to pass away suddenly (one right in front of me) (I live in an independent living facility and I am the youngest here - most have varying degrees of psychosis/dementia - hard to live with).  I went to a party last week and I sat alone at my table while others crowded around with each other excluding me.  I left and came home very depressed.  I am an easy target where I live, bullies come after me. I have no trust with anyone who lives here anymore. Have been here a year and can't connect with anyone, very depressing, so I stay alone in my apartment.   I do not drive and with my agoraphobia, leaving my home and venturing out alone is very very scary to me.

This just isn't fair. I guess things like this never really stop happening in life... People never grow up... but hey, think of it this way. You're better off without those people in your life. If they don't want to give you the time of day? Screw 'em. You're better than them. If they want to bully you? That means you have something they don't, and they feel they need to cut you down to feel better about themselves. While you may not be able to connect with anyone in person there yet, you do have us here to connect with. :)

I need to tell you about a medicine cocktail that enabled me to leave my house when I was practically housebound from anxiety... It was a combination of Stelazine + Serax + Vistaril. My pdoc prescribed the Stelazine to me grudgingly because it was a first-gen antipsychotic, but when she saw how I blossomed with it, she let me take it for a good while. The Serax (oxazepam) and the Vistaril (hydroxyzine pamoate) were just icing on the cake that I took with it to boost the efficacy (she told me to take it with it if I wanted to, which I didn't always do but did more often than not...). You're already on Zyprexa, which is a pretty sedating antipsychotic, but Stelazine can be a little stimulating in low doses. Perhaps your pdoc could allow you to take Stelazine 1 mg 1-2 times per day with some very low-dose Serax (10 mg 1-2 times per day)? The Vistaril I fear would be too much for you with your current regimen.

1 hour ago, Dewey said:

Just not a life that I want to keep living.  I have to get on something to help calm down my brain so I can function in the world.  I have been on most medications now and nothing works or the side effects are too harsh.  It's just becoming too hard now to function in this world. 

I understand. I've been there too. It gets better! Nothing can suck forever! Everything is transitory! Hang in there and stay strong! :)

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Keep your head up, things will get better.  Zyprexa is a good med, especially if you just need to calm down quickly. 

I have trouble leaving the house as well.  But, it's not healthy to isolate.  You were able to go to a party, I would never go to one unless it was just a few people in  my immediate family.  So chalk that up as a win! 

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19 hours ago, mikl_pls said:

Sorry the Latuda didn't work out for you. I'm sorry that I didn't read that thread, I have been in bed the past few days with depression and have just come out of that depression. That's interesting that your pdoc points out about if you had early dementia, that you would not respond to the Zyprexa as well as you do. I wish I understood more about that. I wonder if it has something to do with the anticholinergic mechanism of action?

Does your pdoc know why you are experiencing these symptoms?

I'm so very sorry you are living like this. I hope your pdoc and your neurologist can find a solution for you. You deserve a better quality of life than this.

This just isn't fair. I guess things like this never really stop happening in life... People never grow up... but hey, think of it this way. You're better off without those people in your life. If they don't want to give you the time of day? Screw 'em. You're better than them. If they want to bully you? That means you have something they don't, and they feel they need to cut you down to feel better about themselves. While you may not be able to connect with anyone in person there yet, you do have us here to connect with. :)

I need to tell you about a medicine cocktail that enabled me to leave my house when I was practically housebound from anxiety... It was a combination of Stelazine + Serax + Vistaril. My pdoc prescribed the Stelazine to me grudgingly because it was a first-gen antipsychotic, but when she saw how I blossomed with it, she let me take it for a good while. The Serax (oxazepam) and the Vistaril (hydroxyzine pamoate) were just icing on the cake that I took with it to boost the efficacy (she told me to take it with it if I wanted to, which I didn't always do but did more often than not...). You're already on Zyprexa, which is a pretty sedating antipsychotic, but Stelazine can be a little stimulating in low doses. Perhaps your pdoc could allow you to take Stelazine 1 mg 1-2 times per day with some very low-dose Serax (10 mg 1-2 times per day)? The Vistaril I fear would be too much for you with your current regimen.

I understand. I've been there too. It gets better! Nothing can suck forever! Everything is transitory! Hang in there and stay strong! :)

Hi Mikl ~ Thank you soo very much for your lengthy response and interest in helping me !! Wanted to respond to what you are suggesting with medication.  Will be seeing my seizure/headache specialist this week and will ask him about your recommendations of the Stelazine/Serax/Vistaril.  My psych doc said no to this combination or even taking them separately, but will see what my seizure doc has to say.  Started Zyprexa last night (1/4 of a 5 mg tablet.  Issues with muscle stiffness and restless legs with cramping so took Cogentin and that eased me back to sleep.  Woke up feeling the stiffness in my legs only, mild sedation. 

Whenever I challenge my psych doc about early dementia, his response is always if I respond to medication and the symptoms disappear, this is not early dementia.  I'm still not convinced as he does not live in my skin 24/7, if he did, he might take a different position on this. 

My psych doc is calling me daily to see how I progress, or he is threatening to put me in the hospital to go thru med changes if I don't improve.  Just one night on Olanzapine is not going to chase all my intolerable symptoms away, however, I will ask him about the anticholinergic mechanism of action and get back to you on that. 

I have made a major decision not to attend any further gatherings here where I live.  I will exchange pleasantries and will limit that time to 5 minutes and then move away.  I will no longer answer the door or phone to them.  Once when I blocked their phone numbers  "the axis of evil" ( a term I now call 4 tenants that travel around as one) circle of people emailed me saying they cannot reach me and wondered if I was mad at them and if they did not hear from me within 24 hours they would call the police to do a welfare check.  Every time I keep my distance from this particular 4 tenants (the axis of evil) they become intense in getting back into my life. They will stand and knock on my door when I try to ignore them, yelling they know I am in there, to come to the door. When I say I am not joining a particular meeting that they are involved in, they want to know why I am not coming and all 4 reach out to me pleading with me to join.  I once sat in their circle of scheming to get even with several tenants here and that was the last time I joined them.  They admitted they are very mean and I have seen the damage they do to other tenants.  Sadly I allowed myself to get involved with them when I first moved here and now I live in fear because of them.   One of them has been particular threatening to my life already. 

I am hoping that I will adjust to the Olanzapine and it will dampen down the anxiety, fear, paranoia feelings that are with me throughout the day and even in my dreams.  I woke up two nights ago hearing myself screaming, but do not know what prompted that.  I do know that that night, I could not get back to sleep as fear and anxiety was too high to sleep and I felt fear and afraid, sense of doom and unreality.  There is really no safe place for me or anyone I can get close to that I feel safe around.  I mistrust everyone right now and am highly suspicious of those that have betrayed and hurt me already. 

It's a terrible way to live.  All my safe places and safe people are now all gone. 

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39 minutes ago, Dewey said:

Hi Mikl ~ Thank you soo very much for your lengthy response and interest in helping me !! Wanted to respond to what you are suggesting with medication.  Will be seeing my seizure/headache specialist this week and will ask him about your recommendations of the Stelazine/Serax/Vistaril.  My psych doc said no to this combination or even taking them separately, but will see what my seizure doc has to say.  Started Zyprexa last night (1/4 of a 5 mg tablet.  Issues with muscle stiffness and restless legs with cramping so took Cogentin and that eased me back to sleep.  Woke up feeling the stiffness in my legs only, mild sedation. 

Whenever I challenge my psych doc about early dementia, his response is always if I respond to medication and the symptoms disappear, this is not early dementia.  I'm still not convinced as he does not live in my skin 24/7, if he did, he might take a different position on this. 

My psych doc is calling me daily to see how I progress, or he is threatening to put me in the hospital to go thru med changes if I don't improve.  Just one night on Olanzapine is not going to chase all my intolerable symptoms away, however, I will ask him about the anticholinergic mechanism of action and get back to you on that. 

I have made a major decision not to attend any further gatherings here where I live.  I will exchange pleasantries and will limit that time to 5 minutes and then move away.  I will no longer answer the door or phone to them.  Once when I blocked their phone numbers  "the axis of evil" ( a term I now call 4 tenants that travel around as one) circle of people emailed me saying they cannot reach me and wondered if I was mad at them and if they did not hear from me within 24 hours they would call the police to do a welfare check.  Every time I keep my distance from this particular 4 tenants (the axis of evil) they become intense in getting back into my life. They will stand and knock on my door when I try to ignore them, yelling they know I am in there, to come to the door. When I say I am not joining a particular meeting that they are involved in, they want to know why I am not coming and all 4 reach out to me pleading with me to join.  I once sat in their circle of scheming to get even with several tenants here and that was the last time I joined them.  They admitted they are very mean and I have seen the damage they do to other tenants.  Sadly I allowed myself to get involved with them when I first moved here and now I live in fear because of them.   One of them has been particular threatening to my life already. 

I am hoping that I will adjust to the Olanzapine and it will dampen down the anxiety, fear, paranoia feelings that are with me throughout the day and even in my dreams.  I woke up two nights ago hearing myself screaming, but do not know what prompted that.  I do know that that night, I could not get back to sleep as fear and anxiety was too high to sleep and I felt fear and afraid, sense of doom and unreality.  There is really no safe place for me or anyone I can get close to that I feel safe around.  I mistrust everyone right now and am highly suspicious of those that have betrayed and hurt me already. 

It's a terrible way to live.  All my safe places and safe people are now all gone. 

I am so sorry you're going through this. For what its worth, like @mikl_pls said, you have us. I really hope the zyprexa helps you...and I know how living arrangements can reek havoc on our lives and how it can result in us isolating. Thinking calming thoughts <3

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18 hours ago, gb84 said:

Keep your head up, things will get better.  Zyprexa is a good med, especially if you just need to calm down quickly. 

I have trouble leaving the house as well.  But, it's not healthy to isolate.  You were able to go to a party, I would never go to one unless it was just a few people in  my immediate family.  So chalk that up as a win! 

Thank you gb ~  Started last night on Zyprexa and hoping the side effects will be manageable.  It's been a year from hell so far, even when I hide away in my apartment, close the blinds, turn off the phone, someone comes to find me to either bully or injure me.  Numerous tenants have told me I am now a target and am actively being bullied, which justifies some of my paranoia. 

45 minutes ago, Butterflykisses said:

I am so sorry you're going through this. For what its worth, like @mikl_pls said, you have us. I really hope the zyprexa helps you...and I know how living arrangements can reek havoc on our lives and how it can result in us isolating. Thinking calming thoughts <3

Thank you Butterflykisses. Blowing appreciation hugs your way !!  Your supported comments helped *smiles*

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13 hours ago, Dewey said:

Hi Mikl ~ Thank you soo very much for your lengthy response and interest in helping me !! Wanted to respond to what you are suggesting with medication.  Will be seeing my seizure/headache specialist this week and will ask him about your recommendations of the Stelazine/Serax/Vistaril.  My psych doc said no to this combination or even taking them separately, but will see what my seizure doc has to say.  Started Zyprexa last night (1/4 of a 5 mg tablet.  Issues with muscle stiffness and restless legs with cramping so took Cogentin and that eased me back to sleep.  Woke up feeling the stiffness in my legs only, mild sedation.

You're welcome! That's what we're here for! :) Really? I can understand your pdoc saying no to the combination of those medications, but to each of them individually? Even Serax? It's just a benzo! C'mon! And Vistaril, it's just an antihistamine! (But then again, Zyprexa is pretty antihistaminergic in and of itself...)

Perhaps your seizure/headache specialist will be a little more liberal, but I doubt he will about the Stelazine since it's an antipsychotic, and they lower the seizure threshold, and he would most definitely not want you on two antipsychotics concomitantly.

Oh my, you must be pretty sensitive to neuroleptics to be having such symptoms at such a dosage of Zyprexa. Thank goodness for Cogentin though!! Oh my how I can't even count the times that medicine has saved the skin on my back!!

14 hours ago, Dewey said:

Whenever I challenge my psych doc about early dementia, his response is always if I respond to medication and the symptoms disappear, this is not early dementia.  I'm still not convinced as he does not live in my skin 24/7, if he did, he might take a different position on this. 

I will need to keep this in mind, because my dad may have dementia, and he has been on and off Abilify, and his symptoms seem to only partially remit. Do you know what specific symptoms he's referring to, if you don't mind my asking?

14 hours ago, Dewey said:

My psych doc is calling me daily to see how I progress, or he is threatening to put me in the hospital to go thru med changes if I don't improve.  Just one night on Olanzapine is not going to chase all my intolerable symptoms away, however, I will ask him about the anticholinergic mechanism of action and get back to you on that.

That's fantastic that your pdoc is calling you daily, but not fantastic that he is threatening to put you in the hospital (I guess you gotta do what you gotta do though...).

Thank you for keeping my question in mind for me! :)

14 hours ago, Dewey said:

I have made a major decision not to attend any further gatherings here where I live.  I will exchange pleasantries and will limit that time to 5 minutes and then move away.  I will no longer answer the door or phone to them.  Once when I blocked their phone numbers  "the axis of evil" ( a term I now call 4 tenants that travel around as one) circle of people emailed me saying they cannot reach me and wondered if I was mad at them and if they did not hear from me within 24 hours they would call the police to do a welfare check.  Every time I keep my distance from this particular 4 tenants (the axis of evil) they become intense in getting back into my life. They will stand and knock on my door when I try to ignore them, yelling they know I am in there, to come to the door. When I say I am not joining a particular meeting that they are involved in, they want to know why I am not coming and all 4 reach out to me pleading with me to join.  I once sat in their circle of scheming to get even with several tenants here and that was the last time I joined them.  They admitted they are very mean and I have seen the damage they do to other tenants.  Sadly I allowed myself to get involved with them when I first moved here and now I live in fear because of them.   One of them has been particular threatening to my life already.

Oh I wish you didn't feel like you had to make that decision. :( I can certainly understand about "the axis of evil..." though... They sound vicious!! What possesses people to be so merciless? Are they sociopaths?

14 hours ago, Dewey said:

I am hoping that I will adjust to the Olanzapine and it will dampen down the anxiety, fear, paranoia feelings that are with me throughout the day and even in my dreams.  I woke up two nights ago hearing myself screaming, but do not know what prompted that.  I do know that that night, I could not get back to sleep as fear and anxiety was too high to sleep and I felt fear and afraid, sense of doom and unreality.  There is really no safe place for me or anyone I can get close to that I feel safe around.  I mistrust everyone right now and am highly suspicious of those that have betrayed and hurt me already.

I hope that you adjust to it too and that it brings you the comfort and calmness that you deserve. I'm so terribly sorry that you are going through this. I can't possibly imagine what it must be like. :( 

14 hours ago, Dewey said:

It's a terrible way to live.  All my safe places and safe people are now all gone.

I am beaming positive thoughts and comforting wishes your way. Please get to feeling better soon and check in with us and let us know how you're doing. :) We care about you! <3

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On 10/25/2018 at 2:20 AM, mikl_pls said:

You're welcome! That's what we're here for! :) Really? I can understand your pdoc saying no to the combination of those medications, but to each of them individually? Even Serax? It's just a benzo! C'mon! And Vistaril, it's just an antihistamine! (But then again, Zyprexa is pretty antihistaminergic in and of itself...)

Perhaps your seizure/headache specialist will be a little more liberal, but I doubt he will about the Stelazine since it's an antipsychotic, and they lower the seizure threshold, and he would most definitely not want you on two antipsychotics concomitantly.

Oh my, you must be pretty sensitive to neuroleptics to be having such symptoms at such a dosage of Zyprexa. Thank goodness for Cogentin though!! Oh my how I can't even count the times that medicine has saved the skin on my back!!

I will need to keep this in mind, because my dad may have dementia, and he has been on and off Abilify, and his symptoms seem to only partially remit. Do you know what specific symptoms he's referring to, if you don't mind my asking?

That's fantastic that your pdoc is calling you daily, but not fantastic that he is threatening to put you in the hospital (I guess you gotta do what you gotta do though...).

Thank you for keeping my question in mind for me! :)

Oh I wish you didn't feel like you had to make that decision. :( I can certainly understand about "the axis of evil..." though... They sound vicious!! What possesses people to be so merciless? Are they sociopaths?

I hope that you adjust to it too and that it brings you the comfort and calmness that you deserve. I'm so terribly sorry that you are going through this. I can't possibly imagine what it must be like. :( 

I am beaming positive thoughts and comforting wishes your way. Please get to feeling better soon and check in with us and let us know how you're doing. :) We care about you! <3

It's soo comforting to come here and be so well received,  understood and validated !!!  :)  Thank you soo much for responding to all my paragraphs in this email.  Yes, I have to believe they (the axis of evil) have sociopathic traits.  Other tenants here comment on their behaviors.  I have not heard from any of them now for over a week, fortunately. I am looking into moving away from here.

On my 4th day of Zyprexa and already seeing my head clear and can think straight and I feel calm.  Anxiety is dampening down. Was able to make it out to my neurologists appt yesterday without any scary feelings. Zyprexa works fast. Hoping I can stay on it. Pretty sure the combo of Pamelor was causing the weird side effects as Pamelor will compete.  I think the Benadryl caused restless legs, I have noticed that in the past if I take it too much.  I was given Reuip for restlegs and will be considering Vimpat for my seizure control.  But first have to see a cardiologist to test my heart to see if it's okay to take this drug as this drug has some heart implications. I also don't like the other side effects: Insomnia, irritability, fainting, double vision, dizziness, and it's a controlled drug and my HMO gives me fits on their protocol in getting anything that is controlled. Neurologist wants a cardiologist to follow me while on this drug.  This is the last drug I have not taken and I dread it due to the side effects. Will be starting the new migraine, once a month Anti-CGRP Amogen injection today.  In all the controlled studies, nothing adverse in side effects. Only thing, they haven't tried it on anyone over the age of 65 and I'm 67. I was finally approved for this drug going forward.

On your dementia question: paranoia, anxiety, fear, ocd, dissociation, depression is lifted on antipsychotics and brings me into the present moment, every time.  I don't feel like there is a veil keeping me apart from reality.  Also, AP helps with restorative sleep, no nightmares.  These all resolve while on AP.  If they did not, he would see me for testing for early dementia. I also noticed that the heightened fear/anxiety/restlessness when the sun goes down is gone, if it did not go away, he would test me for Sundowning. He also works with NIMH and NIH on behalf of his patients, so he's super up on drugs and educates me thoroughly before I try anything new.   Will see what he thinks about Vimpat.  I'm really sorry to hear about your dad.  All these AP's have that dang black box warning.  When my mother developed dementia she was put on all the AP's and it did not help dampen down any of her symptoms, according to her doctor that I talked to, but everyone is different and when she was put on these drugs, she had an advanced cased of dementia and had to be put on restraints behind locked doors in a hospital ward.  I have asked to be tested (gene wise) to see if I have that mutation, but so far haven't found anyone interested in doing this for me.  I think my neurologist would go for that if I was not so responsive to the AP's.  However, one can develop dementia 10 years before onset of symptoms.  What is the age of your dad, if I may ask?  My mother had symptoms about 10 years before she was diagnosed.  There is a podcast called "The Broken Brain" written by Dr. Mark Hyman and he talks alot about dementia that I found very educational.  You can look up his podcast on YouTube.  You can also sign up for his podcasts by typing in "The Broken Brain".  I have listened to all of them.   He has new podcasts all the time too.

Take very good care and catch you later !!

 

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Had a major mood shift today.  Suddenly found myself irritable, difficulty handling large emotions that came out of no where.  So, I took an extra (1/4 tablet) of Zyprexa and .5 mg of Klonopin and within an hour the mood mellowed out. 

I live in constant fear of these women and what they will do to me.  Sometimes it just gets too overwhelming.  The suggestions they made are all veiled threats, but they work on my mind.

When I found out from a neighbor that they were actively bullying me, I also heard they want to steal my cat.  He's a very expensive breed, only 7 months old.  Next week he goes in for his preoperative bloodwork to get him ready for neutering.  I am going to ask that he be micro-chipped during this exam.  I need to be able to  provide proof should he be stolen.  I have had this happen to me when I had a flame point himy kitten.  This makes it even more scarier for me to leave my home.  It's not against the law to steal a cat, but it is with a dog.

There is no safe place for me in this world now, no safe place at all.  I wonder how much longer I can stand this. Sometimes I think it's just not worth all this.  Hoping the Zyprexa helps stabilize me. I have been on this drug now 5 days.  In two days, I will increase it to 1/2 of a 5 mg tablet for another week.  Trying not to overshoot the medication to bring on side-effects, but golly, it's soo difficult to manage this fear, paranoia, anxiety, depression. 

Thank you for reading again.

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On 10/26/2018 at 11:52 AM, Dewey said:

It's soo comforting to come here and be so well received,  understood and validated !!!  :)  Thank you soo much for responding to all my paragraphs in this email.  Yes, I have to believe they (the axis of evil) have sociopathic traits.  Other tenants here comment on their behaviors.  I have not heard from any of them now for over a week, fortunately. I am looking into moving away from here.

I would too if there were such people who lived in the community...

On 10/26/2018 at 11:52 AM, Dewey said:

On my 4th day of Zyprexa and already seeing my head clear and can think straight and I feel calm.  Anxiety is dampening down. Was able to make it out to my neurologists appt yesterday without any scary feelings. Zyprexa works fast. Hoping I can stay on it. Pretty sure the combo of Pamelor was causing the weird side effects as Pamelor will compete.  I think the Benadryl caused restless legs, I have noticed that in the past if I take it too much.  I was given Reuip for restlegs and will be considering Vimpat for my seizure control.  But first have to see a cardiologist to test my heart to see if it's okay to take this drug as this drug has some heart implications. I also don't like the other side effects: Insomnia, irritability, fainting, double vision, dizziness, and it's a controlled drug and my HMO gives me fits on their protocol in getting anything that is controlled. Neurologist wants a cardiologist to follow me while on this drug.  This is the last drug I have not taken and I dread it due to the side effects. Will be starting the new migraine, once a month Anti-CGRP Amogen injection today.  In all the controlled studies, nothing adverse in side effects. Only thing, they haven't tried it on anyone over the age of 65 and I'm 67. I was finally approved for this drug going forward.

That's fantastic about the Zyprexa!

Yes, you need to be very careful with Vimpat. I don't blame your neurologist for wanting a cardiologist to follow you while on it.

Very interesting with the Amogen injection!

On 10/26/2018 at 11:52 AM, Dewey said:

On your dementia question: paranoia, anxiety, fear, ocd, dissociation, depression is lifted on antipsychotics and brings me into the present moment, every time.  I don't feel like there is a veil keeping me apart from reality.  Also, AP helps with restorative sleep, no nightmares.  These all resolve while on AP.  If they did not, he would see me for testing for early dementia. I also noticed that the heightened fear/anxiety/restlessness when the sun goes down is gone, if it did not go away, he would test me for Sundowning. He also works with NIMH and NIH on behalf of his patients, so he's super up on drugs and educates me thoroughly before I try anything new.   Will see what he thinks about Vimpat.  I'm really sorry to hear about your dad.  All these AP's have that dang black box warning.  When my mother developed dementia she was put on all the AP's and it did not help dampen down any of her symptoms, according to her doctor that I talked to, but everyone is different and when she was put on these drugs, she had an advanced cased of dementia and had to be put on restraints behind locked doors in a hospital ward.  I have asked to be tested (gene wise) to see if I have that mutation, but so far haven't found anyone interested in doing this for me.  I think my neurologist would go for that if I was not so responsive to the AP's.  However, one can develop dementia 10 years before onset of symptoms.  What is the age of your dad, if I may ask?  My mother had symptoms about 10 years before she was diagnosed.  There is a podcast called "The Broken Brain" written by Dr. Mark Hyman and he talks alot about dementia that I found very educational.  You can look up his podcast on YouTube.  You can also sign up for his podcasts by typing in "The Broken Brain".  I have listened to all of them.   He has new podcasts all the time too.

I see. That makes sense about the sundowning, or the lack thereof.

Oh my, I'm so sorry about your mother! My dad is 73. He has been told by many of his doctors that he possibly has been developing dementia, specifically vascular dementia, as long as 10-15 year ago. Our pdoc (my parents' and my) basically said he is now in the "confused and angry" stage where he lashes out at everybody, and he is definitely doing just that. We can't seem to get anyone interested in officially diagnosing him with any tests. No neurologist or anyone. He has a pacemaker so he can't have an MRI. The CT scans all show up normal. His current neurologist who is also my neurologist is very conservative, and gave him a very basic memory test in his appointment, and my dad compensates very well, so of course he aced it... so I guess our neurologist saw no need for further testing. One neurologist who was seeing him thought he had NPH, but he never followed up with him and just kept having nurse practitioners follow up with him. Never did a spinal tap or anything. Never did any tests he promised he would do. Awesome, I'll look that up! Thanks!

On 10/26/2018 at 11:52 AM, Dewey said:

Take very good care and catch you later !!

Take care! :) 

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32 minutes ago, mikl_pls said:

I would too if there were such people who lived in the community...

That's fantastic about the Zyprexa!

Yes, you need to be very careful with Vimpat. I don't blame your neurologist for wanting a cardiologist to follow you while on it.

Very interesting with the Amogen injection!

I see. That makes sense about the sundowning, or the lack thereof.

Oh my, I'm so sorry about your mother! My dad is 73. He has been told by many of his doctors that he possibly has been developing dementia, specifically vascular dementia, as long as 10-15 year ago. Our pdoc (my parents' and my) basically said he is now in the "confused and angry" stage where he lashes out at everybody, and he is definitely doing just that. We can't seem to get anyone interested in officially diagnosing him with any tests. No neurologist or anyone. He has a pacemaker so he can't have an MRI. The CT scans all show up normal. His current neurologist who is also my neurologist is very conservative, and gave him a very basic memory test in his appointment, and my dad compensates very well, so of course he aced it... so I guess our neurologist saw no need for further testing. One neurologist who was seeing him thought he had NPH, but he never followed up with him and just kept having nurse practitioners follow up with him. Never did a spinal tap or anything. Never did any tests he promised he would do. Awesome, I'll look that up! Thanks!

Take care! :) 

Mikl ~  Looked up MRI's allowed with pacemakers, there are several links to allowable MRI protocols called " MRI-conditional pacing system".  Here is a link to this pacing system: https://www.mayoclinic.org/medical-professionals/clinical-updates/cardiovascular/new-protocols-allow-mri-selected-pacemaker-patients

You dad needs to have an MRI since symptom management is not revealing what's going on.  This could be something else.  If you have a local teaching hospital, see if you can get thru to a radiologist there and speak to them about this new protocol or if there is some other way to do the MRI since your dad has a pacemaker. 

One thing, I have had numerous MRI's and one day, I forgot to take my keys out of my pocket.  At conclusion of the MRI, I went to get off the table and as I stood up, my keys were laying underneath me, they apparently slipped out of my pocket and I was laying on top of them and nothing happened.  Apparently I never checked my pockets before the MRI.

It's very difficult to diagnose Alzheimers or dementia.  At the passing of my mother, an autopsy was performed and they did not find any Lewy-Bodies in her brain but she had advanced stages of dementia. I forgot what her dementia was called, would have to go look up her autopsy. Question, does Parkinsons run in your family?

Does your dad have a care-giver that takes care of him 24/7? This must be extremely difficult for you to cope with.  Where I live most of the residents here have varying stages of dementia and Alzheimers. 

Yes, Sundowning is a very distinct symptom of dementia and Alzheimers.  One thing about Sundowning is leaving the home and wandering, so doors and windows need special locks.  In some cases microchipping is done to allow the care-giver to trace a patient once they have left the home.  Microchipping is very new and controversial, but one thing, if you dad does have this advancing disease, long term planning is key to keeping him safe. 

After taking a full tablet of Zyprexa yesterday (5 mg) to control my break-thru symptoms, I was able to sleep 14 hours and woke up feeling less drama going on in my mind today.  The drama is still there to a degree, but not what I experienced yesterday.  Hoping I can stay on the Zyprexa indefinitely. 

Have you had any experience with Vimpat?

Today, is day 5 after my last migraine and so far have not experienced any Prodromes (auras) that would signal an advancing migraine.  Hoping the AIMOVIG injection is working to abort any further migraine.  I was having migraine every 5 days which means 3 days in bed suffering with the effects.  Fingers crossed this will help. 

Take care and good to hear from you !!

 

 

 

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Just experienced a sudden rush of large emotions.  It was a mix of sudden adrenaline, fear, paranoia, dread that something bad was about to happen to me, irritability. These were very powerful emotions. Took 1/4 of a 5 mg tablet of Zyprexa along with .5mg of Klonopin and now the edge is dampened down.  I can still feel all those emotions bubbling away under me as I ride the waves of uncertainty. 

Have been keeping a written diary of everything while titrating up on Zyprexa and noticing that this time every day I get this adrenaline rush of all these powerful emotions.

I felt it coming on, but sat with it.  However, just sitting with these large emotions did not work, so turned to medicine to curb all this and the medicine worked, so this is nothing I can meditate thru, breathing did not help, sitting still and waiting did not help, only medication worked which makes me suspicious that it's a chemical imbalance that is occurring.  Interesting that it's occurring about the same time everyday.

Before these large emotions, I felt a strong urge to spend to comfort myself. I needed comforting, but do not understand why.  When I stopped the process of the urge to spend and got away from the computer and did not buy anything, only then did the sudden surge of adrenaline and large emotions hit me.  So first came the strong urge, then once denied came the adrenaline rush with the strong emotions.  I was not feeling any emotions while I was going thru the urge to spend, only when I curbed that action did the onslaught of emotions hit me hard.  This is something new.  Soo many changes with me lately. I'll be sure to talk to my psych doc when he calls me this week, see if it's time to increase the dosage of Zyprexa or perhaps I need to take the 1/4 of 5 mg twice a day.  Not sure if the Zyprexa is wearing off before 3:00PM and causing these tumultuous emotions to break thru.  I do remember this morning pondering over if I needed Zyprexa as I started the day, there was a warning bell going off in my mind.

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12 hours ago, Dewey said:

Mikl ~  Looked up MRI's allowed with pacemakers, there are several links to allowable MRI protocols called " MRI-conditional pacing system".  Here is a link to this pacing system: https://www.mayoclinic.org/medical-professionals/clinical-updates/cardiovascular/new-protocols-allow-mri-selected-pacemaker-patients

You dad needs to have an MRI since symptom management is not revealing what's going on.  This could be something else.  If you have a local teaching hospital, see if you can get thru to a radiologist there and speak to them about this new protocol or if there is some other way to do the MRI since your dad has a pacemaker.

Thank you very much for this info! This should be very helpful to us! :) I will present this to our current neurologist, and if he doesn't think it's a good idea, I will probably seek second opinions.

He has had the pacemaker for a few years now and just recently had a lead replaced as of a few months ago. He has had several cardiac ablations to attempt to fix his atrial fibrillation and flutter, three I believe.

12 hours ago, Dewey said:

One thing, I have had numerous MRI's and one day, I forgot to take my keys out of my pocket.  At conclusion of the MRI, I went to get off the table and as I stood up, my keys were laying underneath me, they apparently slipped out of my pocket and I was laying on top of them and nothing happened.  Apparently I never checked my pockets before the MRI.

Interesting... I imagine keys would be an innocuous object in an MRI, but then again I could be very wrong! I've seen videos of people messing around with MRIs, throwing magnets and things like that in them.

12 hours ago, Dewey said:

It's very difficult to diagnose Alzheimers or dementia.  At the passing of my mother, an autopsy was performed and they did not find any Lewy-Bodies in her brain but she had advanced stages of dementia. I forgot what her dementia was called, would have to go look up her autopsy. Question, does Parkinsons run in your family?

Indeed, it is.

I really don't know for sure. I do remember my paternal grandfather had dementia, what kind I don't know. They called it "Alzheimer's," but I don't know if they really knew for sure if it was or not. I have a very early memory as a young child watching him when he was very demented, very shakily reaching for a bottle of Listerine, so it's possible he could've had some Parkinsonism later on in the disease progress.

My dad has some bizarre involuntary leg movements that developed years ago around the time he started taking Depakote for his bipolar. I think his then neurologist said it was for absence seizures, but it was strange that he said to take it two weeks before starting Lexapro. Now he's diagnosed with bipolar II disorder under our pdoc, and has most definitely had it all his life (probably even bipolar I disorder really...) But they used to be sort of a writhing movement that evolved into a spasmodic jerking movement. I used to have a video of it on my youtube channel but I took it down because it wasn't getting any views. I posted it there in hopes someone would know what it was and could give insight into it. He was medicated with several Parkinson's meds and was diagnosed with RLS (even though I knew this was not RLS... it didn't match the criteria for RLS at all) by our pdoc. He was on up to 6 meds for it at one time and all it seemed to be doing was making it worse and giving him more and more side effects. His neurologist wanted him off of the meds because he thought the dopaminergic meds were exacerbating him. Initially we disagreed, but as he tapered off of them all, his legs seemed to improve to where they were completely back to normal only with an occasional flareup at night (which sounds more reminiscent of RLS to me...). He has Sinemet and Neupro patch that he takes PRN for it now.

I have been questioned by my past neurologists and movement disorder specialists if I have a history of Parkinson's disease in my family, and I have been asked if my sense of smell has diminished, and it has actually diminished in the last few several years, and that's a sign of Parkinson's disease. I've been told I have a slight Parkinsonian tremor in addition to my essential tremor, but that was from my sleep doctor. My dad has absolutely no sense of smell whatsoever anymore.

To answer your question in short: I don't know, but there is a distinct possibility that there has been an undiagnosed history of Parkinson's disease in my family.

12 hours ago, Dewey said:

Does your dad have a care-giver that takes care of him 24/7? This must be extremely difficult for you to cope with.  Where I live most of the residents here have varying stages of dementia and Alzheimers.

My mom and I pretty much are what I guess you could call his "care-givers." I mean, he hasn't totally lost his abilities to take care of himself. He can still eat, bathe, go to the bathroom on his own, that sort of stuff. But I have to sort his pills and we have to remind him to take his meds, and stuff like that. It is extremely difficult to cope with. More so for my mom. I wish we could afford to get some help with him, but I don't think we have enough money for that.

He is angry now at my mom because he is convinced that she is "holding him hostage, prisoner, and holding him back" from getting better (he broke his leg last year or two years ago, I can't remember, it's been such a roller coaster these past few years...). That, according to our pdoc, is a hallmark sign of dementia. He's not allowed to drive because he wrecked my car, and wrecked his truck two or three times. When he is reminded of that, he blows it all off and re-villainizes us, especially my mom, and reasserts that he is being held hostage. He has no sense of judgement anymore, and can't recognize things when they're right in front of him. It worries us that if he were to get behind the wheel again, not only if he would injure himself, but others too. But when I brought that up to him, his response was, "well that's why I have insurance." Like he just doesn't care! I don't need to go down this rabbit hole any further... But I say all this to demonstrate how far gone he is. There is so much more I could say, but I won't. I don't want to make him look like a bad person. I love him, he's my dad. He's just not the same person he used to be. His personality as a whole has changed, which is another symptom of dementia. He also grimaces and makes sour faces all the time, even while he's talking. It's disturbing, but I have to remind myself it's his brain doing that. 

12 hours ago, Dewey said:

Yes, Sundowning is a very distinct symptom of dementia and Alzheimers.  One thing about Sundowning is leaving the home and wandering, so doors and windows need special locks.  In some cases microchipping is done to allow the care-giver to trace a patient once they have left the home.  Microchipping is very new and controversial, but one thing, if you dad does have this advancing disease, long term planning is key to keeping him safe.

That's a good idea. That's very scary though, because we live out in the middle of the woods. Any neighbors we have might not take too kindly to some strange man wondering up to their house... they might get a gun out and threaten to shoot him or something. Yes, that's where I live... Backwoods of Alabama... (T__T) I think it would be conducive to both my mom and dad to move closer to my brothers so we could be closer to them and it would be easier for them to help take care of them and not everything would be on me. I have to get on with my life and get a job and stuff eventually. I don't want to sound like I'm being selfish, but I just turned 31 and I have no real work experience to speak of, have only dated 3 men, and have little job experience (mostly due to my mental illness). Getting the heck out of this town and moving to the city would be nice and create more opportunities for me in all avenues, but I would be further away from my two best friends. Sorry, I didn't mean to get off track there...

But I think if we lived in a good neighborhood should his dementia ever get that advanced, things would be better for him should he ever start wandering.

12 hours ago, Dewey said:

After taking a full tablet of Zyprexa yesterday (5 mg) to control my break-thru symptoms, I was able to sleep 14 hours and woke up feeling less drama going on in my mind today.  The drama is still there to a degree, but not what I experienced yesterday.  Hoping I can stay on the Zyprexa indefinitely. 

I hope so too!

12 hours ago, Dewey said:

Have you had any experience with Vimpat?

No, just read some things about it is all. I know that it just has some very serious side effects.

12 hours ago, Dewey said:

Today, is day 5 after my last migraine and so far have not experienced any Prodromes (auras) that would signal an advancing migraine.  Hoping the AIMOVIG injection is working to abort any further migraine.  I was having migraine every 5 days which means 3 days in bed suffering with the effects.  Fingers crossed this will help.

I'm hoping it keeps working for you too!

12 hours ago, Dewey said:

Take care and good to hear from you !!

 

You take care too!

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11 hours ago, mikl_pls said:

Thank you very much for this info! This should be very helpful to us! :) I will present this to our current neurologist, and if he doesn't think it's a good idea, I will probably seek second opinions.

He has had the pacemaker for a few years now and just recently had a lead replaced as of a few months ago. He has had several cardiac ablations to attempt to fix his atrial fibrillation and flutter, three I believe.

Interesting... I imagine keys would be an innocuous object in an MRI, but then again I could be very wrong! I've seen videos of people messing around with MRIs, throwing magnets and things like that in them.

Indeed, it is.

I really don't know for sure. I do remember my paternal grandfather had dementia, what kind I don't know. They called it "Alzheimer's," but I don't know if they really knew for sure if it was or not. I have a very early memory as a young child watching him when he was very demented, very shakily reaching for a bottle of Listerine, so it's possible he could've had some Parkinsonism later on in the disease progress.

My dad has some bizarre involuntary leg movements that developed years ago around the time he started taking Depakote for his bipolar. I think his then neurologist said it was for absence seizures, but it was strange that he said to take it two weeks before starting Lexapro. Now he's diagnosed with bipolar II disorder under our pdoc, and has most definitely had it all his life (probably even bipolar I disorder really...) But they used to be sort of a writhing movement that evolved into a spasmodic jerking movement. I used to have a video of it on my youtube channel but I took it down because it wasn't getting any views. I posted it there in hopes someone would know what it was and could give insight into it. He was medicated with several Parkinson's meds and was diagnosed with RLS (even though I knew this was not RLS... it didn't match the criteria for RLS at all) by our pdoc. He was on up to 6 meds for it at one time and all it seemed to be doing was making it worse and giving him more and more side effects. His neurologist wanted him off of the meds because he thought the dopaminergic meds were exacerbating him. Initially we disagreed, but as he tapered off of them all, his legs seemed to improve to where they were completely back to normal only with an occasional flareup at night (which sounds more reminiscent of RLS to me...). He has Sinemet and Neupro patch that he takes PRN for it now.

I have been questioned by my past neurologists and movement disorder specialists if I have a history of Parkinson's disease in my family, and I have been asked if my sense of smell has diminished, and it has actually diminished in the last few several years, and that's a sign of Parkinson's disease. I've been told I have a slight Parkinsonian tremor in addition to my essential tremor, but that was from my sleep doctor. My dad has absolutely no sense of smell whatsoever anymore.

To answer your question in short: I don't know, but there is a distinct possibility that there has been an undiagnosed history of Parkinson's disease in my family.

My mom and I pretty much are what I guess you could call his "care-givers." I mean, he hasn't totally lost his abilities to take care of himself. He can still eat, bathe, go to the bathroom on his own, that sort of stuff. But I have to sort his pills and we have to remind him to take his meds, and stuff like that. It is extremely difficult to cope with. More so for my mom. I wish we could afford to get some help with him, but I don't think we have enough money for that.

He is angry now at my mom because he is convinced that she is "holding him hostage, prisoner, and holding him back" from getting better (he broke his leg last year or two years ago, I can't remember, it's been such a roller coaster these past few years...). That, according to our pdoc, is a hallmark sign of dementia. He's not allowed to drive because he wrecked my car, and wrecked his truck two or three times. When he is reminded of that, he blows it all off and re-villainizes us, especially my mom, and reasserts that he is being held hostage. He has no sense of judgement anymore, and can't recognize things when they're right in front of him. It worries us that if he were to get behind the wheel again, not only if he would injure himself, but others too. But when I brought that up to him, his response was, "well that's why I have insurance." Like he just doesn't care! I don't need to go down this rabbit hole any further... But I say all this to demonstrate how far gone he is. There is so much more I could say, but I won't. I don't want to make him look like a bad person. I love him, he's my dad. He's just not the same person he used to be. His personality as a whole has changed, which is another symptom of dementia. He also grimaces and makes sour faces all the time, even while he's talking. It's disturbing, but I have to remind myself it's his brain doing that. 

That's a good idea. That's very scary though, because we live out in the middle of the woods. Any neighbors we have might not take too kindly to some strange man wondering up to their house... they might get a gun out and threaten to shoot him or something. Yes, that's where I live... Backwoods of Alabama... (T__T) I think it would be conducive to both my mom and dad to move closer to my brothers so we could be closer to them and it would be easier for them to help take care of them and not everything would be on me. I have to get on with my life and get a job and stuff eventually. I don't want to sound like I'm being selfish, but I just turned 31 and I have no real work experience to speak of, have only dated 3 men, and have little job experience (mostly due to my mental illness). Getting the heck out of this town and moving to the city would be nice and create more opportunities for me in all avenues, but I would be further away from my two best friends. Sorry, I didn't mean to get off track there...

But I think if we lived in a good neighborhood should his dementia ever get that advanced, things would be better for him should he ever start wandering.

I hope so too!

No, just read some things about it is all. I know that it just has some very serious side effects.

I'm hoping it keeps working for you too!

You take care too!

On the subject of the MRI and that new protocol, I read that it has to do with the type of metal leads that are inserted to the pacemaker.  Good luck with your investigation into this.  I would love to hear how this goes and perhaps I can do some more brainstorming to help.

Looking at my mothers autopsy, it states she had advanced aggressive senile dementia of the Alzheimer's type, no Lewy bodies.  If you get to the MRI, I will tell you what the findings are on her brain biopsy, which will only make sense to compare at that point.  Parkinson's disease is very difficult to diagnose, more so than Alzheimers.  My grandfather had Parkinson's and had the tremors and muscle jerking going on constantly with facial grimaces. 

I have no sense of smell either and with my family history of Parkinsons and my idiopathic balance and gait problems, I wonder if all these neurologists are missing something. 

Is the diagnosis of RLS, restless limbs or restless legs for your dad?  I have both but only are prominent during sleep studies and apparently are related to sleeptime activity not daytime activity. I would love to see your YouTube video of him.  Also, essential tremor can be related to advanced liver disease such as Cirrhosis.  I went thru the whole thing when I saw a Hepatologist for my liver disease.  With liver disease you can have hepatic encephalopathy or hyper ammonia.  Only way to tell about liver disease is to start with an ultrasound.  My blood tests have remained normal.  Also, there is a test for ammonia levels in the blood.  Ammonia can cross over the blood barrier and wreck all kinds of havoc with everything.  Just saw the word "essential tremor" which also is a term used with advanced liver disease.

Have you applied to your county for financial aid and help with caregiving?  In my county there are lots of free resources for adult day care, also there are adult day care centers you could drive your dad to and leave him there during the daytime hours to give yourself and  your mom a break.  Do you belong to any caregiver groups?

Questions about the neurologists you and your dad are seeing.............. are they experts in movement disorders or just general neurologists?

 

 

 

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1 minute ago, Dewey said:

On the subject of the MRI and that new protocol, I read that it has to do with the type of metal leads that are inserted to the pacemaker.  Good luck with your investigation into this.  I would love to hear how this goes and perhaps I can do some more brainstorming to help.

Perhaps we would need to contact his cardiologist to find out more about this. Thank you very much!

2 minutes ago, Dewey said:

Looking at my mothers autopsy, it states she had advanced aggressive senile dementia of the Alzheimer's type, no Lewy bodies.  If you get to the MRI, I will tell you what the findings are on her brain biopsy, which will only make sense to compare at that point.  Parkinson's disease is very difficult to diagnose, more so than Alzheimers.  My grandfather had Parkinson's and had the tremors and muscle jerking going on constantly with facial grimaces.

That's what I was afraid of. He saw a neurologist (his previous one who said he might have NPH and never followed up with him) and he showed us what the clinical picture is of Parkinson's and evidently he didn't think he had Parkinson's. He doesn't have any bradykinesia of any sort to speak of. Just the typical slowed movement that comes from losing balance, especially with diabetic neuropathy in the feet. But the facial grimaces are a very prominent feature right now. He does them almost constantly, especially while he talks.

4 minutes ago, Dewey said:

I have no sense of smell either and with my family history of Parkinsons and my idiopathic balance and gait problems, I wonder if all these neurologists are missing something.

I hope not... I know I mentioned my sense of smell has diminished. I sure would hate to be in my 30's or 40's with Parkinson's.

5 minutes ago, Dewey said:

Is the diagnosis of RLS, restless limbs or restless legs for your dad?  I have both but only are prominent during sleep studies and apparently are related to sleeptime activity not daytime activity. I would love to see your YouTube video of him.  Also, essential tremor can be related to advanced liver disease such as Cirrhosis.  I went thru the whole thing when I saw a Hepatologist for my liver disease.  With liver disease you can have hepatic encephalopathy or hyper ammonia.  Only way to tell about liver disease is to start with an ultrasound.  My blood tests have remained normal.  Also, there is a test for ammonia levels in the blood.  Ammonia can cross over the blood barrier and wreck all kinds of havoc with everything.  Just saw the word "essential tremor" which also is a term used with advanced liver disease.

Restless legs syndrome for my dad. When he goes to sleep, he's perfectly still. He hasn't had a sleep study for it though. He has issues with sleep doctors. They all want to hone in on his sleep apnea and that's all they want to focus on. They lose track of everything else he was referred to them for. Unfortunately I took the video down. I'll see if I can find the video on my phone and post it again.

I actually have had chronically elevated alkaline phosphatase levels for years now, as well as other liver enzymes, though not to the extent that the alkaline phosphatase has been elevated. It's like in the 200's, and has been for a few years. It all started when I was put on all these meds for all these conditions that I have developed over the course of the past 6 or so years. Lamictal seemed to precipitate it, and it just got worse from there on out. I should probably get that checked out. I was once referred to a GI doctor about it, and he just kinda pushed me aside and never followed up with me about it.

11 minutes ago, Dewey said:

Have you applied to your county for financial aid and help with caregiving?  In my county there are lots of free resources for adult day care, also there are adult day care centers you could drive your dad to and leave him there during the daytime hours to give yourself and  your mom a break.  Do you belong to any caregiver groups?

I doubt they would have anything... it's Alabama... they have crap for anything like that. Oh, I don't think my dad would like that, and I don't think my mom would either. I don't belong to any caregiver groups, and neither does my mom.

12 minutes ago, Dewey said:

Questions about the neurologists you and your dad are seeing.............. are they experts in movement disorders or just general neurologists?

I think he's just a general neurologist. I don't know if he is a movement disorder specialist or not. But he seems to be very well educated.

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36 minutes ago, mikl_pls said:

Perhaps we would need to contact his cardiologist to find out more about this. Thank you very much!

That's what I was afraid of. He saw a neurologist (his previous one who said he might have NPH and never followed up with him) and he showed us what the clinical picture is of Parkinson's and evidently he didn't think he had Parkinson's. He doesn't have any bradykinesia of any sort to speak of. Just the typical slowed movement that comes from losing balance, especially with diabetic neuropathy in the feet. But the facial grimaces are a very prominent feature right now. He does them almost constantly, especially while he talks.

I hope not... I know I mentioned my sense of smell has diminished. I sure would hate to be in my 30's or 40's with Parkinson's.

Restless legs syndrome for my dad. When he goes to sleep, he's perfectly still. He hasn't had a sleep study for it though. He has issues with sleep doctors. They all want to hone in on his sleep apnea and that's all they want to focus on. They lose track of everything else he was referred to them for. Unfortunately I took the video down. I'll see if I can find the video on my phone and post it again.

I actually have had chronically elevated alkaline phosphatase levels for years now, as well as other liver enzymes, though not to the extent that the alkaline phosphatase has been elevated. It's like in the 200's, and has been for a few years. It all started when I was put on all these meds for all these conditions that I have developed over the course of the past 6 or so years. Lamictal seemed to precipitate it, and it just got worse from there on out. I should probably get that checked out. I was once referred to a GI doctor about it, and he just kinda pushed me aside and never followed up with me about it.

I doubt they would have anything... it's Alabama... they have crap for anything like that. Oh, I don't think my dad would like that, and I don't think my mom would either. I don't belong to any caregiver groups, and neither does my mom.

I think he's just a general neurologist. I don't know if he is a movement disorder specialist or not. But he seems to be very well educated.

You know, the facial grimaces could be from the medication he has been on,it's called tardive dyskineska or TD.  Sometimes this condition becomes permanent or will occur months after stopping certain medications.  I take Cogentin which helps suppress with rigidity of the muscles.  Look into finding a movement specialist, since the other neurologists failed to follow-thru for your dad. 

The next doc you need to see is a Hepatologist which is a liver specialist and start with an ultrasound of your liver.  I would make that appointment sooner than later and when/if you go, be sure to ask for an ammonia blood test.  Don't go to a general GI doc.  I have Non Alcoholic Fatty Liver Disease with mild fibrosis around my portal vein - had to have a liver  biopsy to find all that out.  I am Level 1 with Fibrosis.  Because NAFLD is soo prominent now, alot of docs are just not following this, but you need to be seen.  When you reach Level 3 Fibrosis, then medication starts, now you need to make dietary changes. If you want, you can check out the American Liver Foundation website, as they have a great web support group that I belonged to.  Good luck and you can keep me posted if you like with this.

Heading to a dark room, having my 5 day migraine. 

 

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On 10/29/2018 at 2:39 PM, mikl_pls said:

Perhaps we would need to contact his cardiologist to find out more about this. Thank you very much!

That's what I was afraid of. He saw a neurologist (his previous one who said he might have NPH and never followed up with him) and he showed us what the clinical picture is of Parkinson's and evidently he didn't think he had Parkinson's. He doesn't have any bradykinesia of any sort to speak of. Just the typical slowed movement that comes from losing balance, especially with diabetic neuropathy in the feet. But the facial grimaces are a very prominent feature right now. He does them almost constantly, especially while he talks.

I hope not... I know I mentioned my sense of smell has diminished. I sure would hate to be in my 30's or 40's with Parkinson's.

Restless legs syndrome for my dad. When he goes to sleep, he's perfectly still. He hasn't had a sleep study for it though. He has issues with sleep doctors. They all want to hone in on his sleep apnea and that's all they want to focus on. They lose track of everything else he was referred to them for. Unfortunately I took the video down. I'll see if I can find the video on my phone and post it again.

I actually have had chronically elevated alkaline phosphatase levels for years now, as well as other liver enzymes, though not to the extent that the alkaline phosphatase has been elevated. It's like in the 200's, and has been for a few years. It all started when I was put on all these meds for all these conditions that I have developed over the course of the past 6 or so years. Lamictal seemed to precipitate it, and it just got worse from there on out. I should probably get that checked out. I was once referred to a GI doctor about it, and he just kinda pushed me aside and never followed up with me about it.

I doubt they would have anything... it's Alabama... they have crap for anything like that. Oh, I don't think my dad would like that, and I don't think my mom would either. I don't belong to any caregiver groups, and neither does my mom.

I think he's just a general neurologist. I don't know if he is a movement disorder specialist or not. But he seems to be very well educated.

mikl ~  Just checking in to see how you are doing.  Have you thought anymore about going to see a Hepatologist?  Also, how is your dad coming along?

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Spoke with psych doc yesterday and I am not at 5 mg of Zyprexa that I break up and take throughout the day to keep a steady plasma state.  Even though it has a long half life, still experiencing breakthru symptoms.  So far the 5 mg is not giving me side effects that I cannot tolerate.  

However, having visual hallucinations.  Not sure if that is because the higher I go on the Zyprexa is lowering the threshold for seizures and these are seizure auras I am seeing.  I have an email in to my headache specialist to hop on a new anti-seizure med as I am on nothing for seizure coverage now with the exception of Klonopin which isn't strong enough.  I did look this up under Zyprexa and it has been known to lower that threshold for seizures.

Within an hour of taking the Zyprexa, I feel calm coming over me and that gives me a sense of safety and control.  However, last evening right before game night, one of my neighbors kept talking over the top of me, interrupting what I was trying to say and totally ignored me, so I faced him and told him to his face what I thought about his behaviors and left.  I have not been able to do this before, I usually just dissociate and stay frozen until I come back to the present, but this time I was very present and able to defend myself which is a huge breakthru for me.  So, the Zyprexa is dampening down enough anxiety and raising the veil of dissociation to allow me to be present when I feel threatened. 

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