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CarmelRob

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Hi. My name is Robert, I'm 29, and I haven't posted on DINET for a couple of years now but I'd like to try to get back into the community if that's alright.

I have an extremely disabling form of hyperadrenergic POTS which has made it impossible for me to live a normal life. On top of that I've suffered from major Depression, OCD, and severe gastro-intestinal disorders which I believe is related to the POTS/CFS.

My current medication regiment is:

12.5 mg of Zoloft

2.5 mg of Zyprexa BID

.5 mg of Ativan TID

10 mg of Nadolol(Beta-Blocker)

2 Colace capsules

I've found that the Zyprexa and Zoloft sort of balance each other out since one drug antagonizes serotonin while another agonizes it. If I miss my Zyprexa, after a couple of days I soon start to get unimaginable pain in my abdomen and stop having bowel movements! I believe this is due to my super sensitivity to Zoloft as well as other SSRIs. However, if I go back on Zyprexa, the pain goes away and I start having BMs again, thankfully. There is, unfortunately a dark side to Zyprexa, and I can only describe it as an awful "EMPTINESS" in the head, what feels like a total lack of blood flow to the brain. For this reason, you will often see me wearing a hat to more effectively heat up my head. Sometimes, though, the "EMPTINESS" is unbearable and I just HAVE to miss a dose of Zyprexa to set things right again.

So, to sum it up, my current solution is to take Zyprexa until I can't bear the "EMPTY" feeling anymore and then miss a couple of doses to put me on track again. I know this sounds unprofessional, irregular, but I just can't come up with an alternative.

Can anybody help me with these two topics:

1.) I'm thinking of changing over from Zoloft to Celexa in hopes that I don't have to rely as much on Zyprexa to take care of the associated GI problems I get from SSRIs. Is Celexa supposed to have less side effects than the other SSRIs?

2.) Does anybody else get the "EMPTY" feeling in their head or am I the only one? It's so hard to describe the "EMPTY" feeling to doctors.

Thank you so much for all the love and support!

-Robert

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I think I may have had something like the empty feeling you describe, but I'll have to think about it - I'm very tired and having trouble remembering clearly at the moment. I did have a very unpleasant "emptiness" in my head on Seroquel, though this was among the least of my problems with it - I'm not sure if this is what you describe, though. I think Celexa has a relatively low side effect profile, though you prob. don't want to quote me on that, but it does tend to have a somewhat rough discontinuation, if you end up needing to stop taking it. This depends on person, but I usually no longer pick my meds by side effect profiles, since in my experience, it's impossible to predict which med will become your wonder/nightmare drug, in advance of taking it. If there's good reason to believe it may help you, and you're feeling unwell enough to need it the first place, it's usually worth a try. Again, this is my experience, but I've had zero side effects to meds many other people can't tolerate, horrible side effects to meds everyone is typically able to tolerate, and paradoxical side effects to meds infamous for causing the opposite of what I experienced (e.g. agitation and anorexia instead of somnolence and weight gain).

Have you tried other antipsychotics/serotonin antagonists, besides Zyprexa? Zyprexa can be pretty rough, on average, in terms of side effects - maybe a different AP would work better?

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I've tried 3 different AAP's, Seroquel has been the best for me so far. I was on Zyprexa for several months, and did not have the physical sensation of emptiness as you describe, but more of an emotional, loss of soul emptiness. Also, sugar cravings.

You seem to indicate that the Zyprexa is holding the Zoloft down, or counteracting some aspects of the Zoloft - in what respect? Has the Zoloft been too activating? If so, you may want to reconsider your diagnosis. (SSRI "activation" is how I found out I'm a beeper (BiPolar). Not trying to diagnose you, just giving food for thought. And I have heard that Zoloft is notorious for the stopping of the pooping. Could fiber supplements help at all?

In any case, if you are having side effects with either med to the point that you find yourself needing to start and stop, I would suggest that you get thyself post haste to your nearest doctor/psychiatrist/something. It shouldn't be that way.

I can tell you that I do know what it is like to deal with both a physical and mental illness, FWIW.

hope you feel better soon,

Amber

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Yes, I've tried other Atypical Anti-psychotics before. Seroquel, Risperdal, and Abilify didn't work so well with me. Seroquel made me too tired during the day time however I could try only taking it at night. Risperdal raised my prolactin levels too high and Abilify made me agitated and nervous.

Like I said before, Zyprexa takes away the GI problems I would otherwise experience with SSRIs alone. Pretty weird since I don't hear many other people talk about that.

Does Celexa have a bad discontinuation withdrawal even though it has a pretty long half-life(35 hours)? The last time I was on Celexa I was in the hospital and the doctors put me on more than I could handle(30 mg). I'm thinking of switching from 12.5 mg Zoloft to like 5 mg of Celexa.

I hate playing around with medications. My dream would be to find a rock solid regiment that works and that I would not have to change!

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hi rob -

and welcome (back) to the forum. i'm one of the few still here from when you were here years back though there are a few others as well (and others who read &/or stop in to say hello now & again). not sure whether or not i was all that active when you were here previously as i may have been only reading/ lurking at that point but nonetheless i at least recognized your name. and of course you are MORE than welcome to jump back in as a more active poster; while we're all glad to welcome you i'll hazard a guess that the fewer-in-number males among us might be particularly glad to add another to their ranks. but moving on....

i unfortunately can't help you out all that much with your specific questions but will reiterate katja's succinct statement re: meds, specifically re: having "zero side effects to meds many other people can't tolerate, horrible side effects to meds everyone is typically able to tolerate, and paradoxical side effects to meds infamous for causing the opposite of what I experienced." she put it better than i could replicate & it's something that i've found to hold true not so much or only for myself but perhaps more importantly as a maxim for those with dysautonomia in general. to put it even more shortly: we don't always follow the "rules"....something you seem to have certainly found to hold true for yourself as well.

while i have been around the world of autonomic dysfunction for quite a few years & have tried many of the meds i actually don't have experience with most of the meds mentioned in your post, likely due to the fact that - as someone with autonomic failure - my body tends toward the extreme "hypo" in many of the exact realms that your body tends toward the "hyper". all in all, however, there are a LOT of forum members with hyperadrenergic POTS &/or some degree of hyper-activity as far as their autonomic nervous systems are concerned so you shouldn't have trouble finding others to converse with who have at least some of the same issues physically.

all of that said, though, i did take celexa several years back and must say that discontinuing it was NOT easy in the least. i am saying this without having had any experience with other similar meds as the only other med i've taken in the classes being discussed is the very-similar-to-celexa lexapro (which my body pretty much didn't distinguish as any different.) nonetheless, when i was on celexa/ lexapro i was unfortunately never told that there was any need to taper (& wasn't as well-educated myself so didn't bother to ask); as such, when i had to discontinue it for participation in a research trial i stopped it cold turkey & it was HORRIBLE. at the time i didn't know what was happening right away b/c i was stopping other meds simultaneously so blamed how ill i was on simply "being off my meds" but in hindsight - and with the cumulative knowledge & experience born of taking (& having to discontinue) all of the other meds involved on multiple occasions in the years since - i know for certain that a good deal of what i was dealing with was classic SSRI withdrawal. and to say that it was unpleasant is an understatement. so....while i can't comment on it - it being the discontinuation of celexa - in comparison to other SSRIs &/or other typical &/or atypical antipsychotics in that i honestly have no idea whether its easier or harder, i CAN attest to the fact that it is NOT a medication that should be stopped cold-turkey b/c it very much does merit a cautious discontinuation in order to prevent or at least minimize a withdrawal that is not an experience i would wish on anyone.

other than the issue of discontinuation/ withdrawal though i never had much trouble with celexa or lexapro. (i again speak of them together b/c my body pretty much experienced them as one and the same.) when i first started it/ them &/or increased my dose i occasionally had a bit of nausea in the mornings for a few days but it was self-limited & never severe, aka it always stopped within several days & even when happening didn't limit my ability to eat &/or function as much &/or as fully as otherwise possible. in all honesty though i'm not entirely sure how helpful it ever was for me physically. at times i think it might have helped some of my GI issues &/or my fatigue. and while i originally started it to help with autonomic issues/ symptoms at one point we increased my dose i hopes that it would help some with a period of (much) more-than-situational depression i was dealing with; since the depression abated & hasn't returned i can't really say whether the med was helpful or not. in the end i never went back on it after having to stop it for the clinical research study almost 5 years ago...not b/c of any problem it caused but more so b/c of the unknowns (in my experience) relative to whether it ever really helped.

all in all though i am a big fan of trying anything that has a chance of helping and jump at the opportunity to do so whenever reasonably possible. i can't tell you how many times i am surprised at - & somewhat saddened by - folks here on the forum who repeatedly complain of how (understandably) miserable they are symptomatically but yet refuse to try A, B or C b/c they are too afraid of what "might" happen. in saying this i am NOT in any way trying to comment on or otherwise judge cautious decision making re: treatments & medications; it's not particularly wise to jump on every next "cure" offered by every tom, ****, & harry either and i am the last one to advocate being a patient who isn't educated &/or involved with &/or in his or her own treatment & health. but there are some who don't & won't try ANYTHING b/c of all the "what ifs" and it just saddens me b/c of how many people i have seen achieve pretty darn good control of symptoms, and thus a pretty high level of health, after finding - sometimes only after quite a bit of trial & error - the right combo of meds &/or other treatment options. but i digress. not sure what got me going on that tangent as it certainly wasn't directed specifically at you &/or any of your specific questions. i'll leave it here just in case someone reading needs to hear it but do NOT take it too personally as i certainly had no intention of giving you any sort of lecture. sorry about that!

i do want to encourage you to keep pressing to hopefully find a med/ treatment combo that perhaps works a bit better for you than the balancing act you're currently trying to work with. there is definitely something to the fact that many folks with dysautonomia do better taking smaller doses of more than one med than a higher dose of any one med, and that in many cases the two meds may involve what is at least partially a push-pull &/or balancing act of some type similar to your description of the the serotonin balancing act you (& your meds) may be trying to achieve. but the way in which you are stopping & starting some of your meds is something that may be hurting more than helping you physiologically in the long run. on one hand i commend you for the amount of effort you're currently putting into trying to control your symptoms as much as possible; the delicate back & forth you describe is testament to how much you're willing to put toward trying to feel better. and yet - as others have mentioned - i can't help but think that there's some combo out there that could give you at least a bit better stability than what you have at the moment; while dysautonomia is in many ways known for its ups & downs & its lack of stability/ continuity, some of the meds that you mention starting & stopping simply aren't intended to be taken in that way and, as such, i can't help but think that they may be contributing to your difficulties at least as much as - if not more than - they might be helping. i don't at all doubt the way you've figured out their starts & stops & the corresponding effect(s) on your signs & symptoms that you've experienced but some of the meds may be contributing less obvious effects that are more long-acting & which may be adding to the continuous back & forth cycle that you're doing your best to balance. bottom line - and lots of ramblings later - to say that i hope and firmly believe that if you keep searching & pushing & trying you'll find a combo that's works at least a bit better for you moving forward. not necessarily some magic pill &/or mix that has you in perfect health (though i'm sure you'd take that too!) but something that at least offers a bit less of the back & forth balancing act.

speaking of which do you have a decent doc that you're working with? one that is knowledgeable about or at least familiar with autonomic dysfunction? or barring that someone who is open & willing to learn? obviously you've had to have received a dx as well as meds from someone along the way but just wondering what degree of physician partnership & expertise you're currently working with?

along the lines of meds you have or have not already tried or considered, have you tried anything to specifically or directly address any of your GI issues? SSRIs have certainly helped others with GI issues but this doesn't generally involve having to start &/or stop them repeatedly. for better or worse i am very well acquainted with the world of GI motility meds so feel free to let me know if you have any questions in that realm.

i hope that the celexa info at least was/ is perhaps a bit helpful, though only in combination with info from others & elsewhere. and i hope that you do receive some helpful feedback from others as well.

okay...shutting up for the night. not sure how what i thought would be a short post turned into one of my books but certainly isn't the first time....

cheers,

;) melissa

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Hi Rob,

May I ask if the zyprexa is for your OCD? I have never heard of antipsychotics being used for OCD or depression. I have really severe OCD and unfortunately don't tolerate meds, so just have to deal with it, but anti psychotics are a pretty major drug to be given for it. I took anafranil for a awhile, which was like a miracle drug for me, but it does cause increased heart rate so it didn't last.

When you talk about the empty feeling, is it like cold, or a fog, or you just feel like a robot emotion wise? Antipsychotics are notorious for causing people to just feel nothing and that's usually why there is such a high rate of non compliance.

Sorry to be so nosy, but I didn't see anything in the diagnoses you mentioned that require these type of drugs. However, if they work well for you otherwise, you might discuss an alternative dosing, say, taking one every other day or skipping every third day or what ever, with your doctor.

As far as SSRI's my son has been on about 4 different ones now, the only one he has ever had problems with was effexor. That was miserable for him. he's been on paxil, celexa, and is now on lexapro, which seems to be the best one so far for him. He weans off the old ones quickly while starting the new one.

They are all in the same class of drug, but for some reason, one just may work much better than another. I totally understand your reluctance to play with meds, I am so sensitive to everything, I am on pediatric doses of everything except potassium.

Soory if I sound like the spanish inquisition here, but as one OCD'er to another, the drugs you discuss were never in any conversations for it with me. morgan

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