Questioning My Subjectivity Re Medication Confirmed And Other Things. A Vent Too.

[blueskies]

Hi,

I now often question my subjectivity re medications and also I tend to question that I might have thought some of my symptoms - although tachycardia on standing, migraines, severe problems with constipation etc (all measurable) surely can't be in my mind and my psychiatrist doesn't believe they are either. Some of the other symptoms might be, though. That's the problem -- with a misdiagnosis of panic disorder that stood for nearly 2 decades before being diagnosed with pots -- well all that CBT of doing the things I feared -- like standing in line and feeling shakey and ill -- but doing it anyway, really took a toll on my body and messed with my mind and left me always questioning if things happening to me were 'real' or if I'd made them happen. I was a poster child for CBT for panic disorder. I didn't back down from doing anything despite how sick I got until the day I was out walking for exercise and I fell down and could not get up for over an hour and it took me, stopping and resting because I had to - nearly an hour to get home -- a walk that previously would have taken me 5 minutes. Not denying I am an anxious depressed person but the panic disorder diagnosis was a 'neat fit' (all in my head) and the 'balance problems' I continued to complain about were investigated (sent to a neuorologist) only to be told I had a 'garden variety balance disorder' and to get on with things. It was a decade ago when symptoms really increased and eventually led to a diagnosis a couple of years later of POTS. Often, Panic disorder is a known common misdiagnosis for what is really pots.

The other day when at the allergist I mentioned that I don't often trust my judgement in reaction to medications. She was surprised but fortunately we experienced a demonstration that my judgement is questionable. While both of the following medications make me jerk a bit a few times after I've taken a wafer (something I don't worry about because of the good outcome I get from the med), I told her that I have a red, skin burning reaction to Zofran Zydis but did not have it too Ondaz Zydis (I take this occasionally when I get very nauseous with migraine - reducing nauseous feelings makes me a bit more comfortable and often reduces level of migraine). She looked up in her book of meds and what each med contains and it turned out that both the Zoftan and Ondaz wafers contained EXACTLY the same ingredients -- down to the saccharine.

So much for my burning skin after Zofran and not after Ondaz. It was 'in my head.' My next guess will be that now that I know there is no difference then I'm going to have skin burning after Ondaz also. (Oh, I do experience skin redness after taking both, only burning occurred with the Zoftan).

I suspect the anxiety - which reduced a lot when I was first diagnosed correctly with Pots but which has returned as physical things continued to be so difficult to deal with - does make pots symptoms worse and I can't see how it wouldn't but have to say that any anxiety meds have little impact now and meditation will make me feel better while meditating but does not carry over to the rest of the day when I'm faced with having to do challenging things that well people think nothing of doing.

I'm feeling very lost. I do suspect that if I went back on Zyprexa -- an antipsychotic used for bipolar - but also used off label for anxiety and depression I would feel a lot better mentally -- FOR A WHILE. But the side effects of Zyprexa are pretty bad and the two years I was on it after the pots escalated and before I was diagnosed caused great weight gain (now a problem for me - I'm way too fat) and also has a high profile for leading to diabetes type 2 -- with my weight gain I now have I'm borderline in that area now. Plus it's a CNS depressant and I already take meds for pain that have that impact as well. Plus I have sleep apnea (untreated at the moment because of pressure urticaria and the pain the mask causes) and a similar med to Zyprexa with less serious profile -- Seroquel -- causes me to wake up gasping for breathe -- cns depression of breathing. I have the script for zyprexa but it's expensive (even here in Australia) and I really don't want to fill it to find myself waking gasping for breathe and trying to battle further weight gain etc.But I do yearn for the calm it helps provide -- it's not perfect but it's better.

If you are still reading, I have had allergic responses to meds that were undoubtedly real. Anaphylactic reaction to aspirin -- treated quickly thank god. Anaphylactoid reaction to one of two meds -- we still don't know which one it was so I have to avoid both. And a reaction to a opiate patch -- itching, redness, and a six inch swelling around the patch that was witnessed by a doctor. I do wonder now if I'm allergic to codeine like I thought. I took it one day after taking it on various occasions and by the end of the day I had an allergic type rash reaction on my tummy area. I didn't take it again until some months later and when I did I took it one day(to test for allergy) and again the rash appeared. But can someone make a rash appear through anxiety?. In the same spot -- and because I was looking for it and expecting it?

Sometimes I think 'take the zyprexa', and hope it doesn't cause depressed breathing (it didn't for the two years I was on it those years ago) and just battle with or accept the weight gain and the consequent prossible diabetes and have a bit of peace of mind. I'm truly tired of being wired and afraid. I'm 57, I'm not frightened of my own death but I am completely over enduring the constant anxiety and the low grade depression that flares into much stronger depression at times. I've allowed myself to become very isolated and I'm worn out. Plus in the back of my head I'm thinking that if the zyprexa doesn't work I will have nowhere else to turn and my feelings of aloneness and confusion will then be insurmountable. Oh, and the zyprexa does, I know for sure, slow my bowels down. Something that is already a problem.

I just can't work out how to get a handle on this anymore. I never could. I thought I would but I just haven't managed it. I've had pots symptoms crises a number of times and a pretty lousy quality of life physical -- not unendurable but hard to endure -- I handle it but what eludes me is peace of mind and enjoyment of life. Not looking for constant happiness, just the ability to enjoy some things without what feels like the black cloud of pots sitting on my shoulder pouncing or ready to pounce. I'm only half living. My sense of humour in the real world is completely gone. I occasionally still have a laugh at something funny in a movie or book but real life feels too grim to laugh about (although I can have laughs with my psychiatrist too, he's not emotionally invested in my problems. Everyone else around me is - and like most people they really want to get away from me. I don't blame them. I actually understand it. It's a very human response. Life is hard for everyone much of the time. It's hard to be around someone that finds life constantly difficult.

blue

[ramakentesh]

I'm confused. Are you being told your symptoms are psychogenic or related to POTS? Antipsychotic medications are insanely powerful. Do you have psychotic symptoms?

I couldn't imagine dealing with mental illness on top of POTS. I really feel for you.

[ramakentesh]

A lot of the symptoms you describe - while I don't personally experience - are frequently reported on this sight. I wonder if feelings of anxiety and panic are related to sympathetic activation and pots?

I hope so as antipsychotics are scary. I am surprised they have been prescribed for panic disorder or anxiety. How would depressed central dopamine help those?

[blueskies]

I'm confused. Are you being told your symptoms are psychogenic or related to POTS? Antipsychotic medications are insanely powerful. Do you have psychotic symptoms?

I couldn't imagine dealing with mental illness on top of POTS. I really feel for you.

I'm told I have both mental illness and pots. No, I don't have psychotic symptoms. I do have episodes of depersonalisation and they are very scarey when they happen but they happen rarely. They can be bought on by high anxiety.

Thanks for your response, ramakentesh. I realize my post was confusing. My ability to structure anything clearly and to the point is declining badly.

[blueskies]

A lot of the symptoms you describe - while I don't personally experience - are frequently reported on this sight. I wonder if feelings of anxiety and panic are related to sympathetic activation and pots?

I hope so as antipsychotics are scary. I am surprised they have been prescribed for panic disorder or anxiety. How would depressed central dopamine help those?

Hi again, ramakentesh,

I'm sure symptoms of anxiety, panic are related to pots. Not sure about depression. I have been diagnosed with dysthymia -- low grade chronic depression punctuated by severe depressions. I also have experienced episodes of depersonalisation and although terrifying when they happen they are extremely rare so it's likely it's a consequence of very high anxiety.

I have no idea why the second generation antipsychotics help me mentally -- they do affect dopamine as well as serotonin. Anti-depressents are designed to keep serotonin levels from being taken back up but if I take them they make my pots much worse without helping my anxiety/depression. It seems I can't have my serotonin levels messed with without having my dopamine ones messed with as well? No medical background here but perhaps there's more at work in these anti-psychotics than effects serotonin and dopamine levels ???? At any rate zyprexa will effect me negatively with at least one symptom for sure -- constipation. But from past experience it calms my mind quite effectively.

Thank you,

blue

[Katybug]

Blue,

I have a migraine so I can't write all I want but just know that you aren't alone. You have a large community here that are here for you. I will write again when I can form my thoughts more clearly about what you wrote but I don't think you should second guess yourself. If you feel like it's happening ....it's happening.

[margiebee]

I also have a diagnosis of both POTS and mental illness (obsessive compulsive disorder). I was originally diagnosed with OCD with panic disorder but my doctor and psychologist concluded that the panic disorder is not psychological at all and entirely POTS related. It is definitely difficult to distinguish, especially when mental illness can indeed have a profound impact on physical health. I also think that POTS is an extremely anxiety-inducing illness, with all the uncertainty and stress involved. I think its less about seperating the two out and more about just getting healthy, no matter what it takes. My current med for example, which I am currently tapering off of, helps with both my POTS and OCD. Unfortunately it is a benzodiazepine drug and not recommended for longtime daily use.

Basically what I am getting at is, it is difficult to find a psychiatric drug that works with POTS in my experience. But I think that if you can it is vital to get your doctor and therapist/psychologist/psychiatrist to work together on this. You very well may have both issues happening simultaneously, and the meds for anxiety can be a disastrous combination with POTS. I find that it works best to limit medication as much as possible, my doctor often laughs at how often I turn down meds. But I am sensitive to all medications, and I find it much easier to find natural remedies for both issues that work for me (aromatherapy for anxiety, compression and salt loading for POTS, lifestyle changes and herbal remedies for both) and to chip away at what's left with low doses of medications. I too have difficult reactions to meds, whether real or imagined, and for me it is a trigger I try to basically avoid if possible. Don't let anyone discount your discomfort just because they think it isn't a "real" reaction, if you're uncomfortable you're uncomfortable.

[blueskies]

Blue,

I have a migraine so I can't write all I want but just know that you aren't alone. You have a large community here that are here for you. I will write again when I can form my thoughts more clearly about what you wrote but I don't think you should second guess yourself. If you feel like it's happening ....it's happening.

Thanks Katybug.

I am second guessing myself. So exhausting and confusing. And disempowering, also.

All my sympathies re your migraine. I feel for you. Your gesture to me of responding even when in pain of migraine shows an empathetic nature.

blue

[blueskies]

I also have a diagnosis of both POTS and mental illness (obsessive compulsive disorder). I was originally diagnosed with OCD with panic disorder but my doctor and psychologist concluded that the panic disorder is not psychological at all and entirely POTS related. It is definitely difficult to distinguish, especially when mental illness can indeed have a profound impact on physical health. I also think that POTS is an extremely anxiety-inducing illness, with all the uncertainty and stress involved. I think its less about seperating the two out and more about just getting healthy, no matter what it takes. My current med for example, which I am currently tapering off of, helps with both my POTS and OCD. Unfortunately it is a benzodiazepine drug and not recommended for longtime daily use.

Basically what I am getting at is, it is difficult to find a psychiatric drug that works with POTS in my experience. But I think that if you can it is vital to get your doctor and therapist/psychologist/psychiatrist to work together on this. You very well may have both issues happening simultaneously, and the meds for anxiety can be a disastrous combination with POTS. I find that it works best to limit medication as much as possible, my doctor often laughs at how often I turn down meds. But I am sensitive to all medications, and I find it much easier to find natural remedies for both issues that work for me (aromatherapy for anxiety, compression and salt loading for POTS, lifestyle changes and herbal remedies for both) and to chip away at what's left with low doses of medications. I too have difficult reactions to meds, whether real or imagined, and for me it is a trigger I try to basically avoid if possible. Don't let anyone discount your discomfort just because they think it isn't a "real" reaction, if you're uncomfortable you're uncomfortable.

Thanks, Margie bee.

wise advice from you and I appreciate it. Actually, 'focussing on just getting healthy' and not 'separating the two' sounds pretty good. I see my psychiatrist Friday next week and being able to think through this stuff and get such good, 'been there', responses is, I think, hopefully, helping me find some equilibrium.

What I do find reassuring about myself is that I'm a mother with three grown children (and three young grandbabies) and when it comes to helping them emotionally when they have their life's troubles I'm really very good at it - that's the feedback anyway. If only I could apply to myself that which I do and say to help my kids.

blue