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On 5/18/2018 at 11:13 AM, Gearhead said:

I gave my first injection two days ago and so far nothing untoward is happening other than back on my migraine schedule of one every 5 days so far.  I heard it can take up to 3 months for this to take effect, so it will be a waiting game.  I also was approved for the Amgen Safety Net Program, but I have to reapply before January to continue with this drug. 

The injection stung like a son-of-a-gun, almost pulled out the injector as a knee jerk reaction, but those long 15 seconds finally ended, shrew !!

How about you, Gearhead, have you started with AIMOVIG? 

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I don’t get enough migraines to make it worth trying. I just wanted everyone here who might need it to know about it.

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for those looking for other newish alternatives, I'd had botox injections do wonders.  ask if you want more information.  I was having a tension headache or a migraine close to daily and now I've had three in the month of November.

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8 hours ago, dancesintherain said:

for those looking for other newish alternatives, I'd had botox injections do wonders.  ask if you want more information.  I was having a tension headache or a migraine close to daily and now I've had three in the month of November.

I’ve been doing this for the past year, possibly longer and it works amazingly. Have only had a handful of migraines since starting it. 

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9 hours ago, dancesintherain said:

for those looking for other newish alternatives, I'd had botox injections do wonders.  ask if you want more information.  I was having a tension headache or a migraine close to daily and now I've had three in the month of November.

Dances ~  Hurray for YOU !!!  Success !!! Nothing worse than a 3 day migraine.  Do you have migraine with aura?

I am waiting to hear what my out of pocket costs for migraine botox will be, since I use straight Medicare and do not have secondary insurance. 

How did you feel after the 32 injections? How many months have you had these done?

I had a nerve block and it did wonders for me for three months,  but had bradycardia so neurologist will not do that again. 

Did the migraine elimination diet for a year and that was not successful. 

Have had migraine since I was a child, but those were abdominal migraines until my teens when they switched to migraine with visual auras and other weird auras. 

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I haven't ever had an aura where I see things (I also can't visualize things, so that might be a contributing factor).  I have had an aura consisting of the other random effects--getting nauseous, developing muscle stiffness, balance issues, slurred speech.  I was actually at a school meeting with a client when that hit, so it was bad.  fortunately I had imitrex in my purse.  But that was the first time I had the aura.  I usually don't. 

The total number is a little less than 32, but I can't remember exactly.  They're somewhat painful when going in (which makes sense--they're sticking needles into your face).  After that, I was very lucky that I didn't have any side effects that I could tell.  I've had it twice and it's supposed to be 10-12 weeks apart, so about 6 months now.  My doctor called me a "super responder" because most people don't have as quick a reaction as I did.  I'm scheduled for what may be my last set in December (it's supposed to stick once you get it working, rather than having to do them endlessly). 

Mine were covered by insurance, though I switched insurance 10/1.  They have different criteria, but the general idea is that you've tried different meds from different classes and they haven't worked. 

I told my doctor that 1) the frequency reduced drastically (at the time of my last appointment I'd gone from probably 15-20 migraines or tension headaches per month to six migraines and six tension headaches across three months); 2) the intensity of the ones that happened was greatly reduced (it had been averaging a 7 on the pain scale according to my notes and it had dropped to a 4).  After the most reent round it's gotten better.

I'm a convert.  I just hope it sticks once I find a new job and go back to work, because I'm sure that that's a complicating variable.

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I started having migraines back in the summer of 2010. I don't know why they started up so regularly since I could count on one hand how many I had in my 18 years of life to that point. I suffered for a few years with them coming and going on a weekly basis until I finally wound up driving myself in an 8am traffic jam mid-migraine to an internist' office at a hospital. He prescribed me three medications. A low-dose of the tricyclic anti-depressant amitriptyline, the abortive medicine sumatriptan, and promethazine for the ensuing nausea. He told me his wife suffered from migraines as well and he had been trying the amitriptyline with her and it seemed to help. I was also a success with it, to the point I don't even take the medication anymore. I also haven't needed sumatriptan in probably almost 3 years. 

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23 hours ago, dancesintherain said:

I haven't ever had an aura where I see things (I also can't visualize things, so that might be a contributing factor).  I have had an aura consisting of the other random effects--getting nauseous, developing muscle stiffness, balance issues, slurred speech.  I was actually at a school meeting with a client when that hit, so it was bad.  fortunately I had imitrex in my purse.  But that was the first time I had the aura.  I usually don't. 

The total number is a little less than 32, but I can't remember exactly.  They're somewhat painful when going in (which makes sense--they're sticking needles into your face).  After that, I was very lucky that I didn't have any side effects that I could tell.  I've had it twice and it's supposed to be 10-12 weeks apart, so about 6 months now.  My doctor called me a "super responder" because most people don't have as quick a reaction as I did.  I'm scheduled for what may be my last set in December (it's supposed to stick once you get it working, rather than having to do them endlessly). 

Mine were covered by insurance, though I switched insurance 10/1.  They have different criteria, but the general idea is that you've tried different meds from different classes and they haven't worked. 

I told my doctor that 1) the frequency reduced drastically (at the time of my last appointment I'd gone from probably 15-20 migraines or tension headaches per month to six migraines and six tension headaches across three months); 2) the intensity of the ones that happened was greatly reduced (it had been averaging a 7 on the pain scale according to my notes and it had dropped to a 4).  After the most reent round it's gotten better.

I'm a convert.  I just hope it sticks once I find a new job and go back to work, because I'm sure that that's a complicating variable.

Thank you for the information on the Migraine Botox :)  I had a Nerve Block 6 months ago and the needle had to go in pretty far, it was intense pain for about 10 seconds each.  That was a very long needle, I heard the Botox Migraine needles used are usually smaller.  Fingers crossed the out of pocket cost won't be too high as I really need this, every 5 days is awful + the 3 days recovery. I wasn't sure how long one had to take the Botox after the three years. 

Lewis Carroll's "Alice in Wonderland" book was presumed written off of his experiences with migraine auras.  There is a migraine aura called just that, where suddenly I feel very large for my environment or very tiny.  People can suddenly appear very far away or too close.  Landscapes change, shift and move around, buildings can sway, colors become very vibrant, sounds very loud and smells overpowering.  Those are not typical and can be confused with my seizure auras.  However, my typical aura is what looks like what one would see looking thru a Kaleidoscope in my field of vision that starts out as a tiny dot and grows larger and moves around until I have no vision at all, that lasts about 5-10 minutes. Sometimes that fractured vision is clear shapes, other times it's different colors.  Several days before I experience very large emotions, frequent urination, fear, dizziness (spinning) and vertigo (where suddenly I feel like I am riding a roller coaster), heavy fatigue, very depressed, cold hands and cold feet, sinusitis, yawning, numb tongue, moving tingling from mouth down neck thru all my fingers and back up several times and that hurts, word salad. 

After the Nerve Block, they reduced in frequency and pain threshold went way down for 2 months,  now they are coming back with a vengeance. Tried all the preventatives and nothing works.  The Nerve Block was the most effective.  Now hoping the anti-CGRP injection will start to take effect, at least I have been approved for that, that was a lucky break !!  Taking a trial of Medrol now to try to break the every 5 day cycling.  I am on day 4 now of no migraine.  Last week I got to day 7 which is the longest I have gone since they started coming back after the Nerve Block. 

Soo happy for you that your migraines are reducing in frequency, hoping for you that you continue on the path of no migraine.

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12 hours ago, de414 said:

I started having migraines back in the summer of 2010. I don't know why they started up so regularly since I could count on one hand how many I had in my 18 years of life to that point. I suffered for a few years with them coming and going on a weekly basis until I finally wound up driving myself in an 8am traffic jam mid-migraine to an internist' office at a hospital. He prescribed me three medications. A low-dose of the tricyclic anti-depressant amitriptyline, the abortive medicine sumatriptan, and promethazine for the ensuing nausea. He told me his wife suffered from migraines as well and he had been trying the amitriptyline with her and it seemed to help. I was also a success with it, to the point I don't even take the medication anymore. I also haven't needed sumatriptan in probably almost 3 years. 

Yes, I have heard that amitriptyline works very well as a migraine preventative.  I switched to Maxalt after Imitrex stopped working.  I take Zantac for nausea.  When I start to feel one coming on, even before I experience the auras (it's a knowing that I get), I immediately take a Maxalt, then Zantac, 800 mg of Ibuprofen and Benadryl. That combination is close to what an ER will dispense without the opioids. Then I take a very warm bath and soak for quite awhile.  Then make sure I have several cups of coffee and wait it out.  Sometimes that will abort it even before it comes.  Today, taking my cat to the vet will trigger a migraine, so will take a Maxalt in a little while as a preventative. 

For computer viewing, I wear orange lenses that cover my regular glasses.  Just ordered new glasses and am getting the transition lenses that have the yellow/orange tint to them that is supposed to help with the blue or bright lights.  When I first saw what they will look like, I thought, how ugly they look, not very stylish, lol, but then thought, who cares, as long as it helps with reducing migraine.

The only thing I worry about is that migraine with aura can resemble a stroke and people with aura are more susceptible to stroke. 

Wow, de414, you are soo LUCKY your migraine has not returned.  You must be doing something right.  Are you on a migraine free diet, are you doing all those things to prevent one, like regular aerobic exercise, sticking to a schedule, meditation, etc?

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12 hours ago, Dewey said:

Yes, I have heard that amitriptyline works very well as a migraine preventative.  I switched to Maxalt after Imitrex stopped working.  I take Zantac for nausea.  When I start to feel one coming on, even before I experience the auras (it's a knowing that I get), I immediately take a Maxalt, then Zantac, 800 mg of Ibuprofen and Benadryl. That combination is close to what an ER will dispense without the opioids. Then I take a very warm bath and soak for quite awhile.  Then make sure I have several cups of coffee and wait it out.  Sometimes that will abort it even before it comes.  Today, taking my cat to the vet will trigger a migraine, so will take a Maxalt in a little while as a preventative. 

For computer viewing, I wear orange lenses that cover my regular glasses.  Just ordered new glasses and am getting the transition lenses that have the yellow/orange tint to them that is supposed to help with the blue or bright lights.  When I first saw what they will look like, I thought, how ugly they look, not very stylish, lol, but then thought, who cares, as long as it helps with reducing migraine.

The only thing I worry about is that migraine with aura can resemble a stroke and people with aura are more susceptible to stroke. 

Wow, de414, you are soo LUCKY your migraine has not returned.  You must be doing something right.  Are you on a migraine free diet, are you doing all those things to prevent one, like regular aerobic exercise, sticking to a schedule, meditation, etc?

To be honest with you, I believe*, now I have no science backing this up. But I think that when I began treatment for my Bipolar disorder that helped. I just recently in the past two years had come to the realization that my migraines started around the time my bipolar disorder really decided to show itself. But I did read somewhere here on these forums within a blurb someone had posted that the occurrence of migraines are most strongly associated with those that suffer from Bipolar II (which I am). Again, I have no science to back this up, just a correlation I saw in my life.

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6900 a year for that med wow

i had migraines 4-5x week, debilitating, was getting toradol and imitrex injections daily.

went to a chiropractor i met at work(I work in healthcare) he said he thought he could help

since going to him ive had 3 migraines in 4 years

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24 minutes ago, de414 said:

To be honest with you, I believe*, now I have no science backing this up. But I think that when I began treatment for my Bipolar disorder that helped. I just recently in the past two years had come to the realization that my migraines started around the time my bipolar disorder really decided to show itself. But I did read somewhere here on these forums within a blurb someone had posted that the occurrence of migraines are most strongly associated with those that suffer from Bipolar II (which I am). Again, I have no science to back this up, just a correlation I saw in my life.

Wow, de, you bring up something very valuable !!  A triggering event - a sudden forced move away from my former home to a less desirable location and inferior home.  Then sudden deaths of several very close friends that was totally unexpected leaving me with no close friends at all anymore.  Then one major illness after another that required emergency trips for hospitalization.  Then conflicts with my primary HMO doctor and conflicts with some of the tenants here that do not like me.  All this in one year.  The residual is a very wrecked person that has finally gotten my psych docs attention and who called me once a week or more to see how I am doing.

I asked my psych doc if he thought I had BiPolar just last month, but when he answered no, I'm thinking he may have been thinking BiPolar I.  I have remained incredibly depressed since my move and have spending sprees that are leading me straight to bankruptcy.  I can't help myself. 

One of the tenants here claims to have been a nurse on a psych ward for over 10 years and over the past year in observing me, she has commented many times I am BiPolar on the depressed side. 

I am now on Zyprexa and it is helping calm my mind, but the spending goes on and feelings of depression are still with me.  I may not be up in the theraputic window yet. 

Next time I talk to my psych doc, which will be next week, I will make this similarity to the increase in migraine and see what his reaction will be.  When my migraines went from once a month or less for years to suddenly every 5 days, I knew there was something wrong and days I could not get out of bed and wanted to die because I was too depressed to live, became too numerous.

On October 31st, my beloved cat of 13 years passed away in my arms 6 years ago and one year after his death on that anniversary date, I attempted sui*ide and was hospitalized.  I could not live without my cat, he was that one cat that really connected with me and I him.  The worst part is that he was soo sick and it was my decision to put him to sleep and I have never been present when a pet has to go thru this, but I had to be there for him to the very end.  The grief and guilt over what I had to do have plagued me terribly all these years.  I now have a new kitten, but he's having major health problems which is triggering me but I'm working on it by extending my credit line, once again spending.  However, this year, I got thru that anniversary date okay, but it was touch and go most of the day. I remained diligent and alert for any signs I should be hospitalized on that day and when I finally took that Trasadone and went to sleep, I knew I could make it one more day.

The depression is beyond what I can describe, it's soo hard to put into the symptoms of my depression into words. 

But thank you de (( apprecation hugs )) for reading my post and reaching out to me to make this very valuable suggestion.  I see you are on Latuda, is that helping you?

 

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18 minutes ago, looking for answers said:

6900 a year for that med wow

i had migraines 4-5x week, debilitating, was getting toradol and imitrex injections daily.

went to a chiropractor i met at work(I work in healthcare) he said he thought he could help

since going to him ive had 3 migraines in 4 years

That's incredible "looking".  I used to do chiropractic care a long time ago and it did really help. But since going straight medicare with an advantage plan, there has been no coverage for that, but I notice dmy plan just added chiropractic care.

You are incredibly lucky that this is working for you, I'll look into my benefits and see if I can qualify for chiropractic help.

Thank you for this suggestion !!!

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9 hours ago, Dewey said:

That's incredible "looking".  I used to do chiropractic care a long time ago and it did really help. But since going straight medicare with an advantage plan, there has been no coverage for that, but I notice dmy plan just added chiropractic care.

You are incredibly lucky that this is working for you, I'll look into my benefits and see if I can qualify for chiropractic help.

Thank you for this suggestion !!!

i am incredibly lucky. I also didnt have to keep up with the care. after about 2 months he told me to come back if i had more problems, and i havent! from 5x a week to less than 5 in 4 years..........that is lucky

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1 hour ago, looking for answers said:

i am incredibly lucky. I also didnt have to keep up with the care. after about 2 months he told me to come back if i had more problems, and i havent! from 5x a week to less than 5 in 4 years..........that is lucky

Whatever you are doing in your life now "looking", you are successful in controlling future migraine.  Here's hoping you never have to experience these again !!!

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12 hours ago, de414 said:

To be honest with you, I believe*, now I have no science backing this up. But I think that when I began treatment for my Bipolar disorder that helped. I just recently in the past two years had come to the realization that my migraines started around the time my bipolar disorder really decided to show itself. But I did read somewhere here on these forums within a blurb someone had posted that the occurrence of migraines are most strongly associated with those that suffer from Bipolar II (which I am). Again, I have no science to back this up, just a correlation I saw in my life.

I wanted to get back to you "de" on this one very critical paragraph you wrote to me.  I have been doing my research and I see I am a good fit with the consideration I may have BP disorder.This actually is an exciting revelation to me.  There is a spectrum between 1 and 11 of BP and it would explain soo many things, starting from medication failure to psychodrama with people, mood swings, irritability, spending sprees, depression, anxiety, panic attacks and agoraphobia, and attentional issues.  I will be presenting all these to my psych doc when I talk to him next week.  I am a little worried talking to my headache specialist because his partner gave up on me claiming I was too complicated for him to treat and he passed me over to his partner.  His partner wanted me to go back to the former neurologist for treatment with seizure issues and he was quite surprised that I was dismissed from his care.  I don't want this very experienced headache doctor to dismiss me too.  He did mention that I was difficult to treat since soo many medications have failed me and that was a very scary remark because I do not want to loose this doctor.  I have had soo many doctors give up on me, it 's been a hardship and a challenge on what to tell and what not to tell.  I don't think it's safe for me to edit soo many things, but there is a dance I feel I must to do to keep certain doctors onboard with me.  I was thinking of having my psych doc contact this headache specialist to talk about treatment protocol but I don't know how the headache specialist will react to my comorbidity issues, although he does see the antipsychotic medication I am on, so he does have a hint, but not a diagnosis to deal with.  

With some publications online, Zyprexa was mentioned to help with managing the symptoms of BP, which I am currently on now but at a very low loading dose.  However, I am still having breakthru symptoms when significantly challenged, such as yesterday at the vets office with my new kitten.  It's almost time to increase the dosage again but do not want to overshoot and get side effects.

I am waiting to hear what my co-pay will be from Medicare for Botox injections.  Coupled with the anti-CGRP injections I am now doing, these two may be very helpful in controlling these very frequent migraines.  But, you know, I never thought that the migraine auras would classify as psychiatric in nature, that would move me into the BP spectrum, I just thought it was all migraine and accepted it as that. 

You have opened my eyes "de" to a whole new approach to managing my out of control symptoms.  I have soo much to be thankful to you for this.  You are such an asset to this group and a star member.  I cannot thank you enough for brainstorming with me.  ((( appreciation hugs ))).  If you come up with anymore guidance, I would appreciate that.

 

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On 5/18/2018 at 11:13 AM, Gearhead said:

Thank you Gearhead for posting this as the responses I have received have been an eye opener for me and has helped me significantly with a possible new treatment protocol. 

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20 hours ago, Dewey said:

Wow, de, you bring up something very valuable !!  A triggering event - a sudden forced move away from my former home to a less desirable location and inferior home.  Then sudden deaths of several very close friends that was totally unexpected leaving me with no close friends at all anymore.  Then one major illness after another that required emergency trips for hospitalization.  Then conflicts with my primary HMO doctor and conflicts with some of the tenants here that do not like me.  All this in one year.  The residual is a very wrecked person that has finally gotten my psych docs attention and who called me once a week or more to see how I am doing.

I asked my psych doc if he thought I had BiPolar just last month, but when he answered no, I'm thinking he may have been thinking BiPolar I.  I have remained incredibly depressed since my move and have spending sprees that are leading me straight to bankruptcy.  I can't help myself. 

One of the tenants here claims to have been a nurse on a psych ward for over 10 years and over the past year in observing me, she has commented many times I am BiPolar on the depressed side. 

I am now on Zyprexa and it is helping calm my mind, but the spending goes on and feelings of depression are still with me.  I may not be up in the theraputic window yet. 

Next time I talk to my psych doc, which will be next week, I will make this similarity to the increase in migraine and see what his reaction will be.  When my migraines went from once a month or less for years to suddenly every 5 days, I knew there was something wrong and days I could not get out of bed and wanted to die because I was too depressed to live, became too numerous.

On October 31st, my beloved cat of 13 years passed away in my arms 6 years ago and one year after his death on that anniversary date, I attempted sui*ide and was hospitalized.  I could not live without my cat, he was that one cat that really connected with me and I him.  The worst part is that he was soo sick and it was my decision to put him to sleep and I have never been present when a pet has to go thru this, but I had to be there for him to the very end.  The grief and guilt over what I had to do have plagued me terribly all these years.  I now have a new kitten, but he's having major health problems which is triggering me but I'm working on it by extending my credit line, once again spending.  However, this year, I got thru that anniversary date okay, but it was touch and go most of the day. I remained diligent and alert for any signs I should be hospitalized on that day and when I finally took that Trasadone and went to sleep, I knew I could make it one more day.

The depression is beyond what I can describe, it's soo hard to put into the symptoms of my depression into words. 

But thank you de (( apprecation hugs )) for reading my post and reaching out to me to make this very valuable suggestion.  I see you are on Latuda, is that helping you?

 

Wow! That is definitely a lot to go through all at once. I am sorry you have been suffering, I have definitely been there. I myself almost 4 years ago went through a forced move , lost everything, my car, my job, and had to essentially rebuild my life from ground zero. On top of that, I had to wait several months for real psychiatric care. Then* I went through it AGAIN THIS YEAR. Talk about a trauma drama for the ages.

It is great that you pointed out that your psych thought you may have been referring to Bipolar I when you brought it up. I think that's what most people think when we talk about Bipolar disorder period (especially now we have those wonderful commercials advertising Vraylar, showing people at the height of their mania building bird houses and doing yard work in the dead of night).

I am glad at least someone is noticing that you are exhibiting Bipolar II tendencies. The depression is debilitating at best*. I also did the crazy spending and still do. I like yourself have little control and have racked up at least 7,000$ worth of credit card debt on stuff I really didn't even need. I would say maybe 5% of that 7 grand was actual necessities. The rest, not so much.

I'm not really familiar with Zyprexa myself however I did google and discover it is an atypical antipsychotic that has been FDA approved for treatment of acute manic or mixed episodes of Bipolar disorder. Latuda is also an atypical antipsychotic which has been also proven effective in the treatment of Bipolar depression. Like you had suggested, it may be at the point of increasing the dosage of the Zyprexa but I question the efficacy of this considering the fact your exhibiting more Bipolar II symptoms than Bipolar I sans the excessive spending. This could be a very good spring board for conversation between you and your psych about next steps.

As far as me and the Latuda; it has changed my life for the better. I was planning on committing suicide this past summer. I was (as I glossed over in the beginning) in the middle of rebuilding my life again. I had also ran out of medication so I was three weeks going into withdrawal from 150mg lamictal, 25mg abilify, and .5mg of klonopin. I was in a desperate way. I had no insurance either so I went to a clinic for the un-insured and under insured and came out of the appointment feeling worse than I arrived. The PA essentially refused to prescribe me anything that I was on before because "you said yourself that you felt like it wasn't working". Why she listened to what my crazy ass had to say about medication efficacy when I hadn't taken any meds in three weeks and CLEARLY my judgment was clouded I can't tell you. So she ended up giving me the number to the suicide hotline, said she would talk to the psych-NP on staff and get back with me the next day. I left in tears. Fast forward twenty four hours and I was given a 30-day sample supply of Vraylar and told not to come back.

I will give Vraylar some credit. It kept me from pulling the plug on my life. Did nothing for my depression, but the suicidal ideation was kept at bay until I could see a proper psychiatrist mid-august. He gave me several options. Try Depakote, Get back on the Lamictal at a higher dosage, or try Latuda. I was scared at first because you know how things go with meds. You never know what you are going to get. But I tried it, and within like the first 2-3 days I started to feel a difference. At first I thought it was placebo effect but my stagnant depressive state slowly started to lift. I also began to get a handle on my other extreme emotional outburst/breakdowns that I tended to have. I honestly wish I would have done this sooner. I finally feel like I am living a true life. It's almost like a one-stop shop for me. I used to be on a cocktail of medications and I pretty much take one pill a day to keep things under control. The klonopin is prescribed to me to take twice per day but really I take it PRN. So as far as the Latuda goes, I am thankful that my new psychiatrist put me on this medication.

I definitely understand your concern with keeping doctors onboard to treat you. I straight up had one psychiatrist reject me from his clinic on the basis that "we would not be a good fit". It is a mine field on determining what can be said to your doctor and what to keep to yourself. One word of advice I have for you is wait until you are leveled out on the Zyprexa (if you increase dosage or change to a entirely different medication based on your future convo with your psych) before involving your headache specialist. I say this because there is the possibility you may go on the medication merry-go-round once your psych doc determines if you are indeed Bipolar II. The headache specialist doing anything during that point might become counter productive for your health and them as a professional prob should see that. But again, this is just my advice. I am no doctor, I can only speak from what I have experienced in my own life.

That being said, I am so glad that my little paragraph provided a hair of clarity for you, for what has been going on in your life. It is HARD being in the dark on why you are having the mood swings, irritability, spending sprees, depression, anxiety, panic attacks and agoraphobia, and attentional issues. I hope I didn't ramble on too much and you actually got something of value out of my long winded self. Please keep me updated on how things go, I am VERY interested to see your progress forward as someone who has been there.

 

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12 hours ago, de414 said:

Wow! That is definitely a lot to go through all at once. I am sorry you have been suffering, I have definitely been there. I myself almost 4 years ago went through a forced move , lost everything, my car, my job, and had to essentially rebuild my life from ground zero. On top of that, I had to wait several months for real psychiatric care. Then* I went through it AGAIN THIS YEAR. Talk about a trauma drama for the ages.

It is great that you pointed out that your psych thought you may have been referring to Bipolar I when you brought it up. I think that's what most people think when we talk about Bipolar disorder period (especially now we have those wonderful commercials advertising Vraylar, showing people at the height of their mania building bird houses and doing yard work in the dead of night).

I am glad at least someone is noticing that you are exhibiting Bipolar II tendencies. The depression is debilitating at best*. I also did the crazy spending and still do. I like yourself have little control and have racked up at least 7,000$ worth of credit card debt on stuff I really didn't even need. I would say maybe 5% of that 7 grand was actual necessities. The rest, not so much.

I'm not really familiar with Zyprexa myself however I did google and discover it is an atypical antipsychotic that has been FDA approved for treatment of acute manic or mixed episodes of Bipolar disorder. Latuda is also an atypical antipsychotic which has been also proven effective in the treatment of Bipolar depression. Like you had suggested, it may be at the point of increasing the dosage of the Zyprexa but I question the efficacy of this considering the fact your exhibiting more Bipolar II symptoms than Bipolar I sans the excessive spending. This could be a very good spring board for conversation between you and your psych about next steps.

As far as me and the Latuda; it has changed my life for the better. I was planning on committing suicide this past summer. I was (as I glossed over in the beginning) in the middle of rebuilding my life again. I had also ran out of medication so I was three weeks going into withdrawal from 150mg lamictal, 25mg abilify, and .5mg of klonopin. I was in a desperate way. I had no insurance either so I went to a clinic for the un-insured and under insured and came out of the appointment feeling worse than I arrived. The PA essentially refused to prescribe me anything that I was on before because "you said yourself that you felt like it wasn't working". Why she listened to what my crazy ass had to say about medication efficacy when I hadn't taken any meds in three weeks and CLEARLY my judgment was clouded I can't tell you. So she ended up giving me the number to the suicide hotline, said she would talk to the psych-NP on staff and get back with me the next day. I left in tears. Fast forward twenty four hours and I was given a 30-day sample supply of Vraylar and told not to come back.

I will give Vraylar some credit. It kept me from pulling the plug on my life. Did nothing for my depression, but the suicidal ideation was kept at bay until I could see a proper psychiatrist mid-august. He gave me several options. Try Depakote, Get back on the Lamictal at a higher dosage, or try Latuda. I was scared at first because you know how things go with meds. You never know what you are going to get. But I tried it, and within like the first 2-3 days I started to feel a difference. At first I thought it was placebo effect but my stagnant depressive state slowly started to lift. I also began to get a handle on my other extreme emotional outburst/breakdowns that I tended to have. I honestly wish I would have done this sooner. I finally feel like I am living a true life. It's almost like a one-stop shop for me. I used to be on a cocktail of medications and I pretty much take one pill a day to keep things under control. The klonopin is prescribed to me to take twice per day but really I take it PRN. So as far as the Latuda goes, I am thankful that my new psychiatrist put me on this medication.

I definitely understand your concern with keeping doctors onboard to treat you. I straight up had one psychiatrist reject me from his clinic on the basis that "we would not be a good fit". It is a mine field on determining what can be said to your doctor and what to keep to yourself. One word of advice I have for you is wait until you are leveled out on the Zyprexa (if you increase dosage or change to a entirely different medication based on your future convo with your psych) before involving your headache specialist. I say this because there is the possibility you may go on the medication merry-go-round once your psych doc determines if you are indeed Bipolar II. The headache specialist doing anything during that point might become counter productive for your health and them as a professional prob should see that. But again, this is just my advice. I am no doctor, I can only speak from what I have experienced in my own life.

That being said, I am so glad that my little paragraph provided a hair of clarity for you, for what has been going on in your life. It is HARD being in the dark on why you are having the mood swings, irritability, spending sprees, depression, anxiety, panic attacks and agoraphobia, and attentional issues. I hope I didn't ramble on too much and you actually got something of value out of my long winded self. Please keep me updated on how things go, I am VERY interested to see your progress forward as someone who has been there.

 

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Great response to my query to you.  Thank YOU !!!  Life hands us lemons, I'm sure you have heard that one before, but if you hadn't gone to ground zero and found a new psych doc, you may not be where you need to be today and that is on Latuda.  I know it's a hard experience to loose everything (been there too several times and even faced homeslessness), it does something to your ego and psyche not to mention loss of safety.  "Normal" people who have not gone thru what we experience will not understand, hence, being very selective in whom you tell outside this support board.  The term *normal* is a definition I use quite loosely but remember seeing on a 1950 year old washing machine, ha !

I once had a therapist stand up in the middle of a session and ask me to leave because he does not treat people who have personality disorders.  He would not be specific what his terminology meant, but I walked away from that experience shell shocked, never knew anyone in this profession would treat a patient in that manner.  Later on, I discovered when I got a copy of my medical records he was referring to me as "borderline", which I do have some traits only to be confused with anxiety.  I currently do have a neighbor who fits the definition to the T and whom I am trying to gradually be yesterdays news. 

I have three months before I am due back to see my headache specialist, unless I become approved for Botox Migraine treatment.  So, I have sometime before I have another sit-down with him to discuss medication changes.  However, will have the discussion with my psych doc as I left him a lengthy vmail message over the weekend.  I'm sure I'll be increasing the Zyprexa as it's not holding the symptoms now.  I do feel almost immediate relief and symptom control within an hour after taking Zyprexa and it's an ahhhhhhhhhhhhhh moment of calm and control over emotions.  BTW, love your cartoon !!!

I never wanted to be BiPolar, nor even classified as such, a hugh stigma to me and even being on an antipsychotic med is another hugh stigma hurdle for me to even show as a medication to any non-psych doctor.  I used to keep on my refrigerator one of those red folders for emergency medical personnel to access with medical information on the sheet provided until a neighbor pulled it out and read what was on it, that ended that access. 

Early this morning I was awakened to my kitten going thru another attack of hyperthesia and then ending with a seizure.  My apartment was a wreck after he ran thru it at break-neck speed, his vocalizations very loud and it was frightening to watch him go thru all that, he doesn't understand and was very clutchy after that.  Now trying to calm down and self soothe and knowing just witnessing that was ultra triggering so will have to take my next dose of Zyprexa to help me handle the fear that I may have a very sick kitten going forward and can I afford his medical care. 

Question for you, when you mentioned that you are questioning the efficacy of Zyprexa, does that mean that it is not approved for the depressed side of BP?  I tried Latuda and it significantly affected my vision and it felt like I had bugs crawling all over me that first night, weird experience.  So, went back to Zyprexa as I have been on and off this last two years.  I plan to ask about Vylar when I talk to my psych doc probably tomorrow.  My breakthru symptoms are on the increase, so I definitely know I need to increase my dosage.  I wonder if he will add anything to that, or just increase the dosage.  I was on the verge of calling 911 this morning when I felt that surge of mood after my kittens experience.  The surge I could feel coming was like a tital wave coming straight at me.  Will call the emergency line of my psych doc before I call 911 if the dose I just took does not hold the mood shift. 

You must have been going thru major withdrawals suddenly going off of all medication, I'm surprised you didn't go inpatient just for coverage and jump start new medication while there.  Even though you did not have insurance coverage, any Federally insured hospital would not turn you away.  Klonopin has wicked withdrawals, been thru that.  I'm sorry that you had such lousy care at the clinic you went to, for God's-sake, that PA should be reported for failing to provide standard of care for you.  Licensing boards need to hear of things like this.  I never hesitate to report any health professional that shows lack of standard of care.  At the very least, she should have encouraged you to go in-patient for safety reasons.  Health professionals are always soo concerned about drug seeking people and that shows a lack of mental health training.  At least you got Vylar within 24 hours, because their ass was on the line for letting you out of the clinic without dispensing your much needed drugs and why in the world did the PA tell you not to come back to them?  That's medical malpractice at the very least !!  Shaking my head in how those of us who have MI are treated.  When my psych doc goes on vacation, he now calls me before hand to see if I need anything because he has ridden the train wreck story after he comes back if I run out of refills and have to turn to one of his associates for refills which  they always refuse, no matter what.  In my county prison, a person being held for shoplifting was denied her right to see her psych doc to bring in medication for her.  She went thru major withdrawals that week and got out of control. While trying to restrain her, she suffered a major heart attack and suddenly died.  Alot of press over this mistreatment of a person who had MI, so my county got together with this group in Texas who has a protocol for people arrested and suspected to have MI to be evaluated at a specific location before being taken to prison for sentencing.  At this location, they are given medical care and the medicine they need and evaluation by psych docs on call 24/7.  It's a relatively new program.  But most cops are not trained in how to recognize or how to handle an MI patient.  When I was taken to the ER for one of my sui*ide attempts, I got a really neat cop to take me.  The hotline contacted them and they came right away.  Being my age, we related and actually, coincidentally, he was a former partner to a cop I used to date back in the 70's.  But I will say, the ER staff was lacking sorely in treatment of me.  The head nurse kept referring to me as the "suid*de chick" in room 3.  It was then that I was admitted and put on my first trial of Zyprexa.  BTW, just took a dose of Zyprexa 30 minutes ago and the mood shift, after experiencing my kitten, is now being dampened down.  Oh, I asked for a copy of the police report because I was interested in what that cop had to say about the whole event and at the top of the page was the word "Mental Case".  I was shocked and objected to this and called to have it changed but was told there was no other option for MI cases, he had to use that definition.  Harumph !!!

Thank you, de, for being there for me and identifying my symptoms and your recommendations have been soo very helpful.  BTW, right after I took my Zyprexa, I went on QVC and spent more money in an attempt to self soothe and control the pending mood swing, it didn't help.  May go back and cancel that order.  My monthly payment to QVC is getting quite high now.  I have been busy recently returning most of what I purchased there, the "not-needed" things, the impulse buying things.  LOL.  

Debbie

 

 

 

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Talked to my psych doc today and he said to increase the Zyprexa by 1/4 of the 5 mg tablet.  So, I take 1/4 in the early am/ 1/4 mid day and 1/4 at night.  I addressed that I thought I was in the BiPolar spectrum and he disagreed, citing a general mood disorder. He's been stuck on that track since I started seeing him for this "mood disorder", 30 years ago.  He did say that I am on the correct medication for management of BiPolar anyway and he would not change my medication at all since I am not having any side effects from the Zyprexa and it seems to be helping me, however, he agreed I need to increase the Zyprexa and see in the next 7 days if I need another increase. 

Very spaced out today, dizzy, loud ringing in my ears.  With the visual hallucinations I have been having recently, I'm wondering if the Zyprexa is lowering the threshold for seizure activity as I noticed this when I increased the Zyprexa.  The only seizure control I have currently is Klonopin and that's not strong enough to manage my type of seizure.  I sent off an email to my seizure/headache doc asking for his opinion.  So, had to cancel my appointment for today and staying home as I can't think straight and feel as if I'm in another world today.

It's soo hard to differentiate what the symptoms are coming from............... are they from being triggered, or a migraine/seizure aura, or a panic attack with anxiety? 

Oh, it's soo fun to be me. 

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