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I'm wavering between sleeping too much and drinking myself into non-thinking.

 

I'm doing everything right.

 

My pdoc wants the physical shit solved prior to treating the MI...

 

The physical shit is insolvable on it's own. 

 

 

I can only press on the physical on those terms... and I'm under Mayo care.  There's no lapse there.  I can't push to make things happen.  I can only try.  They're the best.

 

 

 

I know I'll come out beyond this.  But the drink/sleep thing concerns me.  What if that's where I end up?  The best I can obtain?

 

 

 

I'm really not sure anymore.

 

 

Does it even really matter?

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Oh Cetkat, I am so sorry you STILL have no answers as to what is going on with you healthwise. That is so depressing, I know, but your pdoc to not treat your MI, that seems cruel. :( It DOES matter Cetkat, don't give up, keep fighting for an answer. Something has to be going on and somehow a doctor somewhere is going to find it. Where are you at now? What specialist will you try next? Don't give up!

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you can't control scheduling at the Mayo Clinic, nor the time it takes to find a diagnosis

you can control what you drink, you could get some help for that, or try AA, or at least reduce your alcohol intake

harm reduction

 

I am sorry you are having such a hard time. What exactly do you want your pdoc to do?  Is he treating your depression?

Do you need a mood stabilizer?  I don't quite understand why he won't treat you.

I am sure the situation is complicated.

 

thinking of you xxoo

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The pdoc (she) want's a cause for the physical symptoms.... fever, dry flushing, ... & now sweating since I started taking the thyroid med again.  It got up to 4.9, so I had no choice... (TSH that is...)

 

the Mayo endo was behind the restart.

 

My wanting to lower my metabolism and thus lower those symptoms wasn't really supported... thou the doc treating them is out of town and thus unable to continue treatment without a visit.

 

The mayo endo is likely going to take over the thyroid med.

 

 

I'm just so frustrated.

 

The dopa med that I got allergic to *was helping*!!  After *years* of nothing!

 

I could likely get that GP to switch to a different dopa agonist, but that's not fair to her.  I actually give a damn about that.  She isn't qualified, and I'm not going to use my relationship with her to get me the requip I need. 

 

 

That's hard.  Knowing that I believe I can improve the depression by myself, but the pdoc I have now isn't willing to do anything without resolution of the physical crap that has nothing to do with the rest.

 

I no longer care if the physical caused the reaction to the MI med.

 

I just want help.

 

Instead, I'm playing the Mayo game.  Figuring out if I have cancer, heart disease, bowel disease.    I don't.

 

 

I kinda wish I did.

 

 

I just wish someone gave a damn enough to fix it.  To at least tell me why I've had a fever for two years.  It's rather sad when you think of suicide for physical reasons when you have irretractable depression.  That's where I am thou.  

 

Doesn't help that there's an element of pain, and I live in FL so nobody treats it.  Damn drug-seekers.

 

Yet, here I sit... and I don't really know why.

 

 

....I really don't.

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You say that your pdoc's theory is that you are bipolar. I'm bipolar and my pdoc would not treat me at all if I was on drugs or drinking, period. He said it was impossible for him to assess me if I was taking anything or drinking anything. I know it's easy to say "don't drink," but anything you can do to curtail it would, I think, get your MI help. After which you will probably find your drinking issues are much better. So goes the circular thing...

 

Good luck.

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I'm so sorry you are going through this. Can you find a new pdoc to treat you? Are you seeing a tdoc. I think you need to talk to a professional about your drinking. You know your in trouble, and yes it does matter. Take care of yourself, your worth it.

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Yep, I try never to go without a tdoc.  I actually have an appointment Monday.

 

The amount of drinking really doesn't worry me, I'm not even on anything for depression that it could interfere with.  (The Prestiq was dropped -- gotta update that..)  I've always had a policy of not drinking at all when I'm trying to figure out meds.  If it was obstructing anything in that way, it would be an easy choice to stop.

 

As odd as it sounds, my previous pdoc supported me drinking.  (That's a complicated story, you can read my blog if you're so inclined)  The current one has read those records, so I'd trust her to mention any concerns if she had them.  She simply doesn't want to mess with anything until the cause of the physical symptoms is understood.

 

Considering that the only real options I know of are an MAOI or dopa-agonist, that choice makes sense to me - even though I don't like it.

 

I just can see the not-goodness of what the either/or (drink/sleep) says about just how much stress I'm under.  That's really the concern for me.  I simply can't think about it and maintain mental stability.  If I wasn't already depressed, all of this would make me depressed.

 

I have no idea how to address that other than to just keep pushing forward and try to ignore it as much as possible.  It even took me a couple of days to get back to this post.  I had to center myself just so I could *handle* reading & replying.

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I don't agree with your pdoc and think his thinking is flawed.  You need meds if you are BP.  Even if you have physical problems.  I can't even believe it.  I would seek a second opinion if possible.  I hope they figure out what is wrong soon.

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I don't agree with your pdoc and think his thinking is flawed.  You need meds if you are BP.  Even if you have physical problems.  I can't even believe it.  I would seek a second opinion if possible.  I hope they figure out what is wrong soon.

 

It's MDD.  The BP is cyclic features that don't include hypo or mania, just different levels of depression - which seems to respond better in general to non-AD meds.  That's why it's not a part of my official dx.

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I'm sorry you're feeling so stuck Cetkat. 

Could the doctor at Mayo clinic communicate with your pdoc to find a way to treat your depression that won't interfere with the diagnosis of the physical problems? That's what I've done for situations in the past. The pdoc just wanted somebody to cover their ass so they wouldn't get sued if something went wrong (in  my case cardiac issues) and once my cardiologist cleared it I could go on the medication I wanted.

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i'm sorry you've run into this problem.  i fought about this for more than six months, and then finally someone listened to me a few months ago.  my meds needed adjusting, because i wasn't responding to anything the way i should.  but my thyroid problem made everyone want to be "hands off" until it was fixed, and nobody wanted to fix it, because it required taking a chance that i'd go manic, and nobody wanted to take responsibility if things went bad.  GP would say pdoc should decide, pdoc would say it's GP's job, and it went round and round until i found a new GP who was willing to take that chance and actually fix my "unusal" physical situation.  pdoc agreed but didn't want to be the one to try going above the normal dose of synthroid (can we say pass the accountability??).  the "unusual dose" worked, which made me both relieved and angry that they made me wait for so long when i KNEW what was wrong to begin with.

 

i hope your doctor gets off his/her ass and gets you treatment ASAP!  getting a Mayo doc must have been tough - i'd still wonder, though, if this is the right doctor for you.  it is NOT okay to leave you unmedicated and at risk like that.  it's not okay to get passed back and forth.  i wonder what your pdoc would say, if you asked, what's the plan for keeping you stable without meds?  IS there a plan?  what kind of accountability would they face if you ended up IP?

 

i ended up on an MAOI, and it's not as bad as all that.  giving up foods isn't really that hard (well it's not for me, anyway).  i've kind of run out of AD's that i can take, so this was a last ditch effort that luckily worked (to some degree).  it's a pain in the ass not being able to pop an ibuprofen for a headache, but i did get Sulindac which is a safe pain med (it just knocks me out, so i don't take it unless i really need it).  i find lithium more annoying than the MAOI, what with the 2 litres of water every day and weight gain and blood tests.  so don't be scared if that's what you end up choosing!  i was scared at first.

 

i understand why you're drinking.  of course you know it's not optimal, but you sound so desperate for relief that it makes sense.  you deserve better than having to drink it all away.  it was a really good idea to come and post about what's happening.  maybe talking out some of the frustration and hopelessness will help.  i know i felt like i would never find anyone who would FIX IT and i'd be stuck feeling like that for the rest of my life.  getting a new doc that listened and cared actually made me sob like a baby.  hang on to that hope, please - i was ready to throw in the towel several times, too.  someone will help if you stick around to keep fighting about it.  even if staying alive is all you can do to fight, then do that whatever way you can manage, even if it's drinking and sleeping.

 

i wish you the best of luck.

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You really need to see a different pdoc.  What if it takes a couple of years to figure out what's physically wrong with you?  After I turned 40, my health went in the toilet, and  my autoimmune numbers were off the charts, and for two years I went from doctor to doctor, even Mayo a couple of times, to try and figure out what was wrong.  They found a lot of unrelated problems, but never were able to find the underlying problem.  One of my main symptoms was that I couldn't sleep, so I was always tired and had no energy.  My GP thought I was depressed, so she gave me some Zoloft, and I went manic and eventually psychotic, so I was diagnosed as Bipolar.   After awhile I was prescribed Seroquel, which knocked me out at night, which helped with my sleep and energy, and after a couple of years, I gave up trying to find out what was wrong.

 

Anyway, I think that maybe your pdoc wants somebody to figure out what symptoms you have that are because of physical problems, so he can narrow down what symptoms he need to look at.  It's just not that simple.  Sometimes you just don't know, and have to at least make some progress with the bipolar symptoms.

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I'm sorry you're feeling so stuck Cetkat. 

Could the doctor at Mayo clinic communicate with your pdoc to find a way to treat your depression that won't interfere with the diagnosis of the physical problems? That's what I've done for situations in the past. The pdoc just wanted somebody to cover their ass so they wouldn't get sued if something went wrong (in  my case cardiac issues) and once my cardiologist cleared it I could go on the medication I wanted.

 

Thank you.

 

I think for that, I'd need a recommendation from a Mayo doctor that the pdoc is comfortable with following.  It's not just a case of being wary of messing up diagnosis.. but that my depression is so far into non-standard treatment that she (my pdoc) feels uncomfortable in general.  I give her great respect for wanting to try and address the MI outside of this on it's own.  I've had MD pdocs (and I do want to add that distinction because they have the extra medical background) state that they don't want to treat me because it appears that I'm untreatable due to non-response and they have no clear course of action.

 

(I want to note that I *can* respond, and did so greatly when first starting until something biochemical changed & the benefit stopped mid-treatment... so I do know there's large gains to be had there.  If that weren't the case, I'd question if meds could help me at all.  However, the fact is that it seems the majority of treatments don't fix what needs fixing - and there's no way to say why or what would... so I'm somewhat at an impasse.)

 

This new pdoc only just became a part of the college system (she has her own practice and I had been seeing her in-practice ARNP pdoc at the school prior to her joining).. and there are limitations with being in that system.  When I broached the subject of trying a different dopa-agonist (because the alternative one resulted in an allergic reaction shortly after the realization that it showed great promise in treating my depression) - she was fine with me being on it.. but she wanted a neuro to rx it to me in that case.

 

Part of me thinks that's a cop-out... but another does understand the reasoning of a doctor not familiar with a medication being very hesitant to take the risk to rx it.

 

In terms of the MAOI... there's really no getting around it not influencing the results of some of my testing.  There's a potential for docs to think through that... but it would absolutely be a barrier - one I don't know that can be intellectually overcome, because I don't have that level of medical understanding.  Even then... I'd be highly hesitant to start it now because it contradicts with so much.  I need to find out what's going on physically and what it responds to.  That has a higher chance of working if there aren't limitations to a treatment -> reaction approach.

 

 

i'm sorry you've run into this problem.  i fought about this for more than six months, and then finally someone listened to me a few months ago.  my meds needed adjusting, because i wasn't responding to anything the way i should.  but my thyroid problem made everyone want to be "hands off" until it was fixed, and nobody wanted to fix it, because it required taking a chance that i'd go manic, and nobody wanted to take responsibility if things went bad.  GP would say pdoc should decide, pdoc would say it's GP's job, and it went round and round until i found a new GP who was willing to take that chance and actually fix my "unusal" physical situation.  pdoc agreed but didn't want to be the one to try going above the normal dose of synthroid (can we say pass the accountability??).  the "unusual dose" worked, which made me both relieved and angry that they made me wait for so long when i KNEW what was wrong to begin with.

 

i hope your doctor gets off his/her ass and gets you treatment ASAP!  getting a Mayo doc must have been tough - i'd still wonder, though, if this is the right doctor for you.  it is NOT okay to leave you unmedicated and at risk like that.  it's not okay to get passed back and forth.  i wonder what your pdoc would say, if you asked, what's the plan for keeping you stable without meds?  IS there a plan?  what kind of accountability would they face if you ended up IP?

 

 

For better or worse, I've been able to circumvent that particular issue.  (Though I do know of the issue you speak of.  I've even created a name for it.  "Not My Problem Syndrome.")  It happens whenever a doc thinks another doc should be the one to decide.  Ultimately each doc shares that view and the patient gets screwed.

 

When I have evidence that docs aren't going to collaborate, I get both opinions and create my own treatment plan.  That sounds bad... but, for example:  I wanted to try Cytomel to raise my T3.  Even at an extremely low TSH, my T3 scores were never more than 2/3rd's of the way up on the scale.  As unlikely as I knew it was, and the fact that other trials weren't able to recreate T3 (cytomel) as an effective antidepressant application for MDD, without much response to anything else - I wanted to make absolutely sure there wasn't a physical untreated cause for my severe depression.  (As far as I can tell, the NIMH used ppl without thyroid disorder, so the ultimate result would have been above average T3.. and therefore under-average TSH.)  My pdoc was ok with trying Cytomel.  My GP was ok with it as well.  Yet - they simply wouldn't talk to each other & each weren't willing to do it on their own.

 

So, I found out the physical concerns of my pdoc, and psych concerns of my GP, and got the responses of it all myself.  Ultimately, my GP rx'd it with the answers I provided and monitored it just on my say so.  I do know she thought the pdoc wanted her to.. but the bigger issue was whether or not both docs agreed.  That's rather mundane stuff though.  Certainly nothing to have legal consequences - I just subbed Cytomel for the Armour Thyroid already rx'd by her.

 

But, yeah.. It's anger producing.  Especially since a Parkinson med is even more off the standard treatment than a thyroid one.  There are *two*, Mirapex and Requip.  Mirapex was actually working when no other psych med had.  And I mean every pysch med under the sun that has any indication for depression other than an MAOI.  But then I got an allergic reaction to the Mirapex.  For a very long time, I didn't even want to take the Requip since random allergic reactions after a long period of time aren't very understood & if I fuck up being able to take Requip - there is no class alternative left.  I wanted to fix the physical stuff (including a fever - ie... allergy response - at least I'm pretty sure all fevers are a function of invasion response of some type - even if it's against your own body) before going to that last resort, because if it worked and I had to stop taking it for fear that by body would kill me for it... I'm not so sure I could handle that.

 

But, at this point.  I really don't think I can afford to wait.  There's no guarantee the constant fever was a trigger to the rejection, and not treating my MI is a definite threat to my life. (That sounds so melodramatic... but it's really not.  I do think of it like that.)

 

As for a plan.  There is none.

 

I'm not even sure she knows what she'd want to put me on after the physical stuff is solved.

 

For me, sadly, the fact that she is planning on doing *something* at some point is enough.  And that's solely because of running into other docs who have zero intention to try or do anything.

 

Still.. when a doc learns that I'm on SSDI for depression, and reacts to the fact that there isn't any med for depression on my med list, I can't help but laugh.  It's a sad, hollow and defeated laugh.. but it *is* pretty fucking ironic... isn't it.  It is because I've been on them all.. and adding one would be solely for paperwork sake at this point... but still.]

 

And that points to the really fucked up part.  In order to keep my SSDI, I have to have constant treatment by a pdoc - even if the consensus is that there's nothing that can be done and I'm not actually being treated.  Add that to the mental destabilization that comes from worthless pdoc visits, and I'm literally risking my life to fulfill a governmental requirement.

 

 

i ended up on an MAOI, and it's not as bad as all that.  giving up foods isn't really that hard (well it's not for me, anyway).  i've kind of run out of AD's that i can take, so this was a last ditch effort that luckily worked (to some degree).  it's a pain in the ass not being able to pop an ibuprofen for a headache, but i did get Sulindac which is a safe pain med (it just knocks me out, so i don't take it unless i really need it).  i find lithium more annoying than the MAOI, what with the 2 litres of water every day and weight gain and blood tests.  so don't be scared if that's what you end up choosing!  i was scared at first.

 

i understand why you're drinking.  of course you know it's not optimal, but you sound so desperate for relief that it makes sense.  you deserve better than having to drink it all away.  it was a really good idea to come and post about what's happening.  maybe talking out some of the frustration and hopelessness will help.  i know i felt like i would never find anyone who would FIX IT and i'd be stuck feeling like that for the rest of my life.  getting a new doc that listened and cared actually made me sob like a baby.  hang on to that hope, please - i was ready to throw in the towel several times, too.  someone will help if you stick around to keep fighting about it.  even if staying alive is all you can do to fight, then do that whatever way you can manage, even if it's drinking and sleeping.

 

i wish you the best of luck.

 

Thanks.  That means a lot.

 

You understand it exactly.

 

I have a drive to survive.  Best case scenario, shit gets fixed.  Worst case, shit gets managed any way possible.  I am glad that I can see the harm and know the score (I certainly don't want to be blind to abusing alcohol)... but it is what I choose & it's for a reason.

 

I'm really not afraid of an MAOI.  Pdocs seem to be.  It's been my experience that it takes either someone who rx's them all the time, or a long time pdoc who has seen you fail upteen treatment plans with limited experience to obtain it.  I'm not too worried about food.  I'd try Emsam first, then Parnate if the Selegiline didn't work.  The FDA only has the lowest level of the Selegiline patch food-free.. but any study of the PI shows that it's the same for any Emsam level.  (Easily put, zero food restrictions in the trials at each dose, zero issues = zero food restrictions necessary)  Parnate has a better tract record though.  I wish they'd make a Parnate patch too.

 

So, beyond the fact that MAOI would be severely limited in treatment opinions, the other issue is that I have a non-dx'd ADHD.  Yeah.. I know, that's a popular almost catch-phrase self-dx... but my current pdoc actually wants me to consult outside pdocs for stims (the university has a strong policy against DEA meds - I'm very lucky I can even get a benzo through their employees).  I've been on stims before, and when I decided to ask the current pdoc for an official interpretation and dx (which I figured would at least allow for future treatment) - she didn't even see a reason and sent me to get the meds elsewhere based on her suggestion.

 

(IE.. so and so sent me here for sole ADHD treatment without messing with the MDD - I'll see you every few months for a refill)

 

While and MAOI may work.. (and if some doctor medical resources have anything to say about it, it's kinda unlikely.. thou more likely than any other psych med) that leaves the issue of finding a doc who is familiar with co-administering an MAOI and Stim.  It can be done, and it is; but it is dangerous.  So dangerous in fact that I'd insist on having an rx for a certain med that can treat deadly blood pressure rises. (Labetalol for the curious, or MAOI ppl)

 

I do want to make sure that whatever stim actually produces results first though, however.  Ritalin seems only to benefit me when my thyroid is an issue.  Adding an adderall stim to an MAOI when you don't already know the stim's potential just seems stupid.

 

So that's why I'm not pushing harder for Emsam atm. (Though, honestly I don't know if the current pdoc has any experience with it.  Also - I really do believe a dopa-agonist would have more effect.)  My type of MDD seems to have a 50/50 response rate to MAOI's according to that physician's network.  Going with an alternate med of an original that showed promise seems far more prudent - on multiple levels.

 

 

You really need to see a different pdoc.  What if it takes a couple of years to figure out what's physically wrong with you?  After I turned 40, my health went in the toilet, and  my autoimmune numbers were off the charts, and for two years I went from doctor to doctor, even Mayo a couple of times, to try and figure out what was wrong.  They found a lot of unrelated problems, but never were able to find the underlying problem.  One of my main symptoms was that I couldn't sleep, so I was always tired and had no energy.  My GP thought I was depressed, so she gave me some Zoloft, and I went manic and eventually psychotic, so I was diagnosed as Bipolar.   After awhile I was prescribed Seroquel, which knocked me out at night, which helped with my sleep and energy, and after a couple of years, I gave up trying to find out what was wrong.

 

Anyway, I think that maybe your pdoc wants somebody to figure out what symptoms you have that are because of physical problems, so he can narrow down what symptoms he need to look at.  It's just not that simple.  Sometimes you just don't know, and have to at least make some progress with the bipolar symptoms.

Unfortunately, at this point I'm stuck with those willing to attempt to treat a case they feel they likely cannot solve (with MI).  It's been my experience that docs don't like to take on patients that they believe they can't help.  Something is better than nothing.

 

I really don't see it taking a couple of years with Mayo.  They're not "regular" docs... as in, they handle specialty diagnosis and then pass care to a primary doc.  They have the knowledge and the facility.  If they hit an impasse, it's because medical knowledge in general is limited & it's not something that I have the ability to sit around for, see one of their doctors off and on, and wait for medical change.  I could possibly correlate stuff and retest later - but this is a different paradigm.  I'm not sure what your experience is, but I've had very thorough testing and consults... and I'm still not done.  A doctor at Mayo is directing my care through numerous departments.  It's not the same thing as "seeing" a Mayo doc for a specific reason as a specialist.  Mayo itself is taking a very direct role in figuring this out.

 

 

I know I need progress.

 

But I need this fever and high level of pain dealt with.  If it isn't, no level of MI treatment will be an overall improvement.  I never thought I'd say that.  MI has been my sole concern since I was young enough to know that I was severely unhappy, and my life's goal was to be happy.  We're talking prior to the age of 10 here.

 

That's how bad this shit is.  It's been going on for nearly two years, and, I'm sorry... but It's beyond me how someone with a constant fever can live any semblance of a life.  I have a friend that does - even.  I give him great props and respect, but I can't understand it.

 

You take the draining of MI and combine it with the physical draining of a constant fever...... there really isn't anything left.  It takes it all.

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Goldfish, your pdoc can't gauge *anything* if you are drinking? Even if it is a symptom (self-medicating)? As you noted, it might be easier to stop drinking if one is being treated properly, and you would think he would act with that knowledge.

 

I find that really disturbing. The thing is, a person can lie about drinking. And many will, without their pdoc's knowledge, if they are afraid to tell her. And *that* is what is *most* dangerous.

 

Anyway, does your pdoc give you a sobriety test before each session? :)

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