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Hi everybody,

Thanks in advance for anyone willing to read through this long post.

I am going to share my experiences with everyone in a hope that we could help each other out. About 2.5 years ago in college (23 at the time) I was carrying about my usual healthy, well being business by walking to the cafeteria. I noticed while walking that I started to have slight chest pains. Anyway, I rested for a minute while the pains went away, and continued to the cafeteria where I got my food and sat down. All of a sudden then, out of the blue, I could feel my heart speeding up and palpitating a mile a minute it felt like. Started hyperventilating and my hands started tingling. Being the first time having these symptoms, I panicked and told someone in the cafeteria I thought I might be having a heart attack or something. So they had an ambulance arrive and drive me to the ER. I started to calm down when I arrived in the ER and lied down on their beds.

As usual protocol, they ran all kinds of heart tests on me...ekg, echo, stress, nuclear stress, you name it. All tests came back fine. Diagnosis...panic attack (understandably). Wierd cause I've had social anxiety since childhoold, but never experienced a panic attack like that. Anyway, I was then put on and taken off a slew of meds. First a beta blocker recommended by a cardiologist cause my BP shot up and he said i had an enlarged heart wall which he thought was due to BP spikes when I get anxious. Also xanax and zoloft by PCP. My BP levels showed normal ranges at home, so I was taken off the beta blocker. For a period of a couple weeks, I had panic attacks, almost several times a day. I developed severe health anxiety. My PCP even put me on an antipsychotic cause he diagnosed me with hypochondriosis (where I was making up my symptoms). Anyway, I was pretty out of it on that and was finally able to see a psychiatrist who took me off that and changed my xanax to klonopin and upped my zoloft, so I was only taking 2 meds, but fairly high doses (100mg Zoloft) and 2mg Klonopin 4 times a day. I was a whole lot better on those meds as I wasn't having panic attacks all the time like on the xanax. I still had this tightness knot type feeling in the center of my chest, so after a while I asked to try another antidepressant, so was put on Cymbalta (60mg). Ok not much change, but after a while that tightness feeling did disappear. I still continued to have this tension type feeling on my left side however.

Time went by...I seemed to be doing ok overall...and I asked to get off the Klonopin because I've read they're addicting. So I tapered that and eventually went off with little problems. I also convinced my doc to lower my Cymbalta to 30mg cause I was tired and yawning all the time. That helped, and I was feeling relatively well. I felt well enough that I wanted to work my way off of my only med, Cymbalta, to see if I could get back to where I was before my first episode or at least handle my health naturally through herbs and supplements. Upon decreasing Cymbalta (I did taper down, but it is difficult cause they only come in capsules so you have to poor the contents out little by little), I started to have panic attacks again. I had an array of neurological and physical symptoms. For example, my eyes felt wierd (pressure kinda), I had boughts of derealization, particularly at night I noticed that the lights seemed unusually dim to me (not so much in the morning though). And it became evident that whenever I stood up from sitting, I felt a surge of adrenaline and my heart would race.

Ok so I was still going to school but began to notice over time that I became really winded after walking up 3 flights of stairs to class (I had, previously to my panic attack just a couple weeks ago, been able to walk up stairs fine, heck even run up them and not feel as winded). I walked to class but began to notice that my heart rate was racing faster than I could count on my pulse.

It was at this time I googled my symptoms and came across POTS, which seemed to account for my symptoms (particularly the increase in hr 30+ bpm being upright). I then became anxious that I might have this and there wasn't a cure or medication aimed for it. Reading through posts here had me worried about fainting and terrible symptoms I've read about. I was off Cymbalta and all medication now for 4 months, and I didn't seem to be getting any better. My symptoms would change every so often and throughout the day. My main complaints were my head, sides of my neck, and of course the racing heart symptoms. There were times when I thought I might be having a stroke. I had a wierd feeling like I wasn't getting any air to my head by breathing. At the time I was convinced I was having some type of discontinuation syndrome from the medication, cause I read some people had symptoms 6 months to a year after stopping it. Of course my doc said it's been long enough the symptoms aren't withdrawal of the meds. My symptoms wore me down so much I decided it wasn't worth it...there was no light at the end of the tunnel, so I went back on Cymbalta and klonopin. Shortly after, my brian fog diminished and my symptoms disappeared for the most part, except for the hr upon standing. In credit to the cymbalta, it did improve my heart rate symptoms. While off...resting rate was 90-100 and standing was around 130-140. On cymbalta, resting was 75-85 and standing was 90-115 most of the time. I was also able to start exercising on a treadmill, every day, for about 35 minutes at a top speed of 3.6 mph on my good days. I was still vary winded when climbing stairs. I saw another PCP and had a tilt table test that showed my hr spiked up and blood pressure dropped some (I don't remember how much).

Now once again after 1 year on cymbalta and feeling relatively "good", I wanted to try going off again to no meds, working my off slower to see if I could avoid the symptoms that might have been from too rapid a decrease last time I tried. However, this time I felt worse than can be. I ended up in the ER a couple weeks ago because I was doing my usual daily treadmill workout and suddenly my heart jumped up and I couldn't settle down, probably cause I was thinking i was dying. Every other day or so I'd have these bouts just sitting on the couch watcing tv and suddenly I'd feel a rush of adrenaline and my heart rate would spike to around 140-160 and stay high like that for about 30 min - 1 hour. It got so bad that I knew if I got up my heart would spike up so I basically only got up to go to the bathroom or eat. My head felt like it was in a vice. Again my symptoms would vary by day or time of day. Since I could hardly move, I couldn't go anywhere and now I'm resuming Cymbalta and klonopin. Been on it now for 2.5 weeks and I've already noticed an improvement in heart surges and hr and I was able to leave the house twice in the past week! I still have head issues, however, which are hard to describe but it feels like a tight band around my head. I'm hoping that will resolve over the next few weeks like they did before.

Does anyone now if medications can induce POTS in someone? I was given relatively high doses of medications and I'm also been pretty sensitve to meds, so I wonder if my symptoms could actually be caused by an alteration in brain chemistry from the medications that without the meds I can't function? Either that or it would have to be something underlying like dysautonomia in which case the drugs are actually helping that. I'm thinking the POTS cause I've given myself 3+ months off all meds and didn't see any improvement, plus the positive tilt table test. Every doctor and psychologist I've been too have said it's anxiety. Yes...I am anxious and I have had social anxiety...but I don't think it can account for my inevitable spike in hr every time I have a change in posture. I've read here that POTS is commonly misdiagnosed as anxiety. The again...what are the odds that I would develop symptoms of an autonomic defect out of the blue one day...no virus or anything. It is very frusturating that most docs have no idea what POTS even is to make an accurate diagnosis.

I'm looking for another doctor. Does anyone have any tips on what I should bring/do when seeing my new PCP? I figure I'd bring in a brochure on POTS and symptoms and check the ones I have. Thanks for the people who took the time to read through this long post.

James

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Hi James,

Cymbalta apparently helps with anxiety and serotonin and norepinephrine all 3 can be issues for people with autonomic regulation issues. If this is a good fit for you I can easily see how you would crash going off it. We are sensitive in general to things that support or unbalance the autonomic system. I had a bad crash from not drinking enough water. I was tired of getting up at night for the bathroom and backed off the amount of water I drank. Not a good idea. I experience

derealization (brain fog) whenever my BP drops low enough, this not happen when I'm laying down. You say it happens at night, are you laying down?

Its strictly my experience that headaches are from tension -which does not mean that is the case for you.

this might be helpful to you.

http://www.ndrf.org/NDRFHandbook.htm

"We" all hate stairs here. Of some help- for me is to use my arm strength on the handrail and pull ,using less of the leg muscles, it helps me alot. But avoid stairs if you can.

I suggest also that you continue to address your panic/anxiety issues in whatever manor you were previously. You might also look into biofeedback as I think you can learn to recognize the source of discomforts and separate anxiety symptoms from postural phenomena.

GOOD LUCK!

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Hi James,

Cymbalta apparently helps with anxiety and serotonin and norepinephrine all 3 can be issues for people with autonomic regulation issues. If this is a good fit for you I can easily see how you would crash going off it. We are sensitive in general to things that support or unbalance the autonomic system. I had a bad crash from not drinking enough water. I was tired of getting up at night for the bathroom and backed off the amount of water I drank. Not a good idea. I experience

derealization (brain fog) whenever my BP drops low enough, this not happen when I'm laying down. You say it happens at night, are you laying down?

Its strictly my experience that headaches are from tension -which does not mean that is the case for you.

this might be helpful to you.

http://www.ndrf.org/NDRFHandbook.htm

"We" all hate stairs here. Of some help- for me is to use my arm strength on the handrail and pull ,using less of the leg muscles, it helps me alot. But avoid stairs if you can.

I suggest also that you continue to address your panic/anxiety issues in whatever manor you were previously. You might also look into biofeedback as I think you can learn to recognize the source of discomforts and separate anxiety symptoms from postural phenomena.

GOOD LUCK!

Thanks for your reply Pat!

The derealization I haven't had in over a year since the Cymbalta fixed that. Hard to recall whether I was standing or sitting when it happened. I don't think it mattered. Anyway, it made me anxious and on edge and to deal with it I would go out on a slow-paced walk cause being outside with the sun and scenery seemed to help some. Bouts would last an hour or 2. Interestingly I don't believe it ever happened in the morning or early afternoon. Contrary to what I have read about POTS symptoms being more severe in the morning, mine seemed to be worse later in the day. The feeling as if the lights are really dim only occurred late in the day or at night, but that's probably because the sun had gone down. Fortunately, I didn't notice that symptom either on Cymbalta. As far as BP goes I didn't check when I had the symptoms to see if it was particularly low or not. In my case I have always shown high bp readings so I haven't been concerned about low bp. My PCP told me I was pre-hypertensive and like I said my cardio doc had me on a beta blocker for high bp spikes. I'm not on a bb anymore. When I have my tachy surges my bp has been elevated, probably caused by additional anxiety. I suppose it has it's benefits cause I have never fainted due to low bp. During my TTT, however, my bp did drop some (I don't remember how much) but apparently not low enough to cause problems.

Also I've read not very many guys get POTS. I guess I might be one of the lucky ones if I do indeed have dysautonomia.

James

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1 issue I would like to get people's ideas on is SSRI or SSNRI? Under what conditions should either be taken? Is it true that it is the dumping of norepinephrine (along with epinephrine) that spikes our heart rates that causes orthostatic tachy? An SSNRI such as Cymbalta or Effexor reuptake norepinephrine as well as serotonin so there is more available for use in the body (although they don't "increase" the actual levels). Would more available norepinephrine make things worse, or would it be needed to help "resupply" the norepinephrine that gets dumped so often, as it is the dumping of norepinephrine that is needed to make our hearts work harder to supply the brain with needed oxygen? So, essentially, do people with POTS have too much or too little norepinephrine? I've read one of Dr Grubb's articles and he states that SSNRIs might perform better than an SSRI, but does anyone know why?

Thank you,

James

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I don't know how norepinephrine and serotonin are involved in the tachy. But my cardio (who specializes in POTS) explained that my tachy (I do NOT have hyperadregenic POTS, btw, so my nore and sero aren't much higher than a normal person's) is caused by the normal functions of the cardiovascular system. My blood vessels leak abnormally; blood pools in my calfs; lack of blood in my head triggers the heart to try harder (tachy); tachy doesn't work so I faint (which is the body's way of forcing me to lay down so that it doesn't have to fight against gravity to get blood to my brain). Some other things that happen during my fainting episodes are due to shock from high tachy (like convulsions, light sensitivity, sound sensitivity, etc).

Sounds like you will have a difficult path confirming your POTS, if you have it, because it is complicated by your psychiatric history. Not sure that meds can induce POTS, unless they damage the autonomic nerves (some surgical procedures do). But they might produce POTS-like symptoms or side-effects that resemble POTS. Do you have some of the other, odd, POTS symptoms? Such as nausea, light sensitivity, etc?

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Yeah I have a lot of other symptoms I've had since a kid, like rare chest pains, eye sensitivity to sunlight and my pupils seem to always be dilated. I sweat a lot also. Those didn't really bother me though (sunglasses helped a lot). My heart and neuro symptoms started to manifest after my first episode (panic attack?), and since I've had cognitive impairment and miscellaneous neurological symptoms, but I've also been on a fair amount of high dose meds for panic disorder. I also have some symptoms others have complained about like exercise intolerance, burping after eating or drinking anything, which have started happening since my initial episode. But I don't know whether the neuro symptoms were caused by the meds or not. But I continued to have them nearly 5 months off all meds, which is why I was thinking it was more underlying (aka POTS or the like). I admit a lot of the symptoms listed on this site for POTS could also be symptoms of regular anxiety which I have a history of, but they have been more severe since my initial episode and the kicker has been that whenever changing postures (either shifting sitting positions and particularly standing up and being upright), my heart rate increases abnormally. Also, what I have read about anxiety is that it doesn't produce exercise intolerance. Cymbalta has made the increase in heart rate not go as high, but the abnormal increase is still there. Also, I did have a positive TTT which showed abnormal (130bpm hr and declining blood pressure) while upright. Anxiety, to my knowledge, would not cause that.

James

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Hi,

I think that there has been some evidence of dysutonomia caused by meds, I think it is normally though after taking it for a very long time. Also, I think that some meds could more or less cause some of the symptoms of dysautonomia, but once discontinued and readjusted everything should return to "normal". So, meds I think could be a possible cause. Also, if it is something that was mildly present prior to starting a particular drug, and then you took that drug (much like with an illness or surgery) that could be your trigger for POTS/dysautonomia if it stressed your body out, and you were already predisposed genetically to dysautonomia etc. (These all come from what I have read on the theories of the etiology etc. of dysautonomia- it is all so new that a lot is not known currently).

For TTT test what was beginning HR? Ending 130 bpm?

Somewhere there is an article that shows that POTS is not caused by anxiety. This maybe helpful to give to drs?

SSRI vs SNRI, I think this is patient dependent and is often found through trial and error to what works or doesn't. I benefit from SSRI's, but I may although have not full tried, benefit more from SNRI's.

The SSRI for me helps with the heat intolerance and blacking out, and major BP/HR shifts with changes in position.

Hope that helps!

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Hi,

I think that there has been some evidence of dysutonomia caused by meds, I think it is normally though after taking it for a very long time. Also, I think that some meds could more or less cause some of the symptoms of dysautonomia, but once discontinued and readjusted everything should return to "normal". So, meds I think could be a possible cause. Also, if it is something that was mildly present prior to starting a particular drug, and then you took that drug (much like with an illness or surgery) that could be your trigger for POTS/dysautonomia if it stressed your body out, and you were already predisposed genetically to dysautonomia etc. (These all come from what I have read on the theories of the etiology etc. of dysautonomia- it is all so new that a lot is not known currently).

For TTT test what was beginning HR? Ending 130 bpm?

Somewhere there is an article that shows that POTS is not caused by anxiety. This maybe helpful to give to drs?

SSRI vs SNRI, I think this is patient dependent and is often found through trial and error to what works or doesn't. I benefit from SSRI's, but I may although have not full tried, benefit more from SNRI's.

The SSRI for me helps with the heat intolerance and blacking out, and major BP/HR shifts with changes in position.

Hope that helps!

Thank you. I've been on SSRIs (like 4 or 5 in the family) about 7 years ago (albeit small doses) for social anxiety, and I did not exhibit any unusual symptoms and was able to come right off cold turkey without trouble. Then 7 years later I tried a couple other meds for anxiety, such as propranolol (a beta blocker) and xanax xtended release. Didn't have problems on those either, and eventually went off those meds...still fine. Then a couple weeks later, had a panic attack (or POTS episode?) out of the blue. After that, a slew of meds like I mentioned before. I remember when my psychiatrist put me on high dose klonopin (2mg 4x per day) and high dose zoloft (100mg) for panic disorder, I felt a change in my heart like its beating was supressed or something cause I used to noticed my heart beating more, and I wonder if those meds in high doses caused some dysautonomic symptoms after being on them for over a year (I've always been sensitive to meds). I didn't notice the orthostatic tachy at first but that might have been due to the meds suppressing my adrenalin levels, but as I began to taper down my klonopin and reduced my cymbalta from 60 to 30 mg (I changed from zoloft to cymbalta), the orthostatic tachy became more apparent. Then after trying to discontinue all meds (tapering down of course), first klonopin and then cymbalta, I had unbearable neuro symptoms, orthostatic tachy where my hr would increase a good 30+bpm upon standing, and the symptoms were still present more than ever after 4 months off, so I gave up and went back on. Then my symptoms were still apparent, but less severe back on cymbalta. Anyway, after recently trying to go off cymbalta a second time within the last 3 months, but this time much slower to see if that would ease symptoms of withdrawal, but this time my heart symptoms were even more severe, and I would have tachy surges sitting down as well as the usual surges standing up, as well as neuro symptoms. I was at the point where if I moved, my body could predict a tachy surge, so I ended up not moving much and just sitting on the couch all day, except to get up when I needed to.

Then I decided enough was enough...I decided to go back on meds, and I'm now 3 weeks back on cymbalta and klonopin. Back on the meds, I no longer get the tachy surges and shaking I had off of them. I still have some neuro symptoms but they are not as bad. My orthostatic tachy is improved. Instead of a steady 130-140bpm while standing (85-100bpm sitting), I am now at 70-90 sitting and upon ortho initial increase to 90-100 and then settling down to around 85-90. But my rates go down even lower late in the evening, and I have found that I am actually brady when going to bed at night. So as you can see, there is still quite an increase even on the meds, but not as severe and I am able to stand for longer periods of time and go places. Once my cymbalta totally kicks in, I suspect I will feel even better like i did last time and I hope I will be able to start my treadmill exercises again, which helped me. So only time will tell.

It is so difficult to make sense of this all. Is this just anxiety, is it side-effects of meds, or is it POTS or other dysautonomia? The docs I've seen in the past all initially diagnosed anxiety. This is not surprising though. I do show anxiety symptoms, but anxiety is also a symptom of POTS, and I've read that POTS is commonly misdiagnosed as simply anxiety. My last doc did a TTT. I don't remember exact figures but resting was around 90-100 bpm and upright was a steady 130+bpm. I was off meds during the test. It also showed a drop in bp but I don't remember how much, but not enough to make me faint (I've never fainted...knock on wood!). I moved within the last year though and I'm going to see a new doc in my area, so if you have any suggestions on what I should bring up or anything, please give me your advice.

Thanks alot,

James

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Lots of folks seem to have GAD or PA or something related (agoraphobia or what not) to anxiety commorbid with POTS because they have hyperadregenic type POTS. I think this is also the type of POTSers who get the excess sweating, which you mentioned having even prior to your initial crash. You might want to get an MRI to check for congenital chiagri malformation or other deformities in the spinal column that can affect autonomic function and produce POTS. I mean, since you had some symptoms present since childhood, you might have that type of POTS. Maybe an endocrinologist could help you sort out hormone dysfunctions too...then you might understand the way your meds are interacting with your POTS (if it's hyperadregenic type). Maybe if you get POTS under control, it will alleviate your PA and vice versa.

If you read some of the patient stories on this site, you will find that lots of POTSers had mild, overlooked symptoms for years before actually crashing. This disease is still SOOO mysterious, it's hard to say exactly how it starts or why it gets worse and better. The only thing I know confidently is what works for me. Trial and error. Trust your own analysis and experience, etc.

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The only other thing I could think of but didn't mention about is that when I was a child I fell from like 7 or so ft and hit my head on a rock. Whether my initial symptoms (like sunlight sensitivity or sweating) started after that, I do not remember. But that is interesting what you said about the spinal column thing. I assumed I was ok after the fall though cause that happened about 15 years ago and I've been ok since then.

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Chiagri malformation doesn't require an accidental injury. It's something people are born with, although it might not affect their health for many years (thus go totally unnoticed). Maybe MightyMouse or another forum member with congenital complications/causes of POTS can better describe it.

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  • 2 weeks later...

I watched an add for Cymblata a few nights ago, and remembered that you mentioned having severe symptoms after starting and stopping it, though overall (after starting it) you seemed helped by it. The TV add mentioned that Cymblata may cause "blacking out or fainting upon standing". That's so POTS, and it's a really wierd side-effect for a med. Maybe you were pre-disposed somehow to POTS, and the medication brought the disease to the forefront?

Good luck finding answers. I hope your appt goes well tomorrow.

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I know I did see several Cymbalta ads that mention that. I wonder how many other meds list that as a side effect. I don't remember that being listed for typical SSRIs...I've been on practically the whole gamut of them in the past (low doses) without an ounce of a problem (except for sleepiness). I bet they say that for Cymbalta because of the norepinephrine reuptake as well...just guessing though. I haven't had a problem with fainting or dizziness per say. But you do bring up an interesting point (as well as a deficiency in the Norepinephrine Transporter Protein being a mechanism for causing POTS), and it's my understanding that SNRIs (but maybe SSRIs also) interfere with the NET protein to prevent reuptake. Perhaps that is why they say SNRIs may work better than SSRIs for POTS (as Dr. Grubbs mentioned in an article).

There is still a lot that doesn't make sense, with too many unknowns. Was my first episode really just a panic attack that I've never had before, or was it the beginning of a POTS fallout? That happened while I was off all meds and hadn't started cymbalta yet. Like I said before I think, I was put on doses that I consider really high, especially since I have been sensitive to the effect of meds in general, and I wonder if that didn't make matters worse. It is really difficult to say if my POTS symptoms were somehow induced by my medications, such as a really unusal side effect of cymbalta.

I might consider a change to a regular SSRI such as Lexapro sometime down the line, cause it has been established twice that my body is so messed up that going without meds is not an option.

To throw more fuel on the fire, I wonder if my vitamin supplement that I had been taking had anything to do with anything, or contributing negatively. It contained green tea (like most quality vitamins do) and the amino acid L-tyrosine, which is a precursor to epinephrine, norepinephrine, and dopamine. Anyway, I recently discovered that green tea has an effect of increasing norepinephrine levels. That, combined with L-tyrosine, and the fact that any norepinephrine increase is prevented from being reuptaken by Cymbalta, may have caused abnormally high amounts of norepinephrine. That might have explained why I was so wired and had the unusual surges of tachy even when sitting calmly upon discontinuation of cymbalta the second attempt. Cause when I tried to go off the first time, I wasn't nearly as disabled with tachy or anxiety.

Anyway, just food for though. And combine that with the fact that I'm a 25 year old male and there is like a 5:1 female to male ratio. I must be a rarity or something.

James

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I watched an add for Cymblata a few nights ago, and remembered that you mentioned having severe symptoms after starting and stopping it, though overall (after starting it) you seemed helped by it. The TV add mentioned that Cymblata may cause "blacking out or fainting upon standing". That's so POTS, and it's a really wierd side-effect for a med. Maybe you were pre-disposed somehow to POTS, and the medication brought the disease to the forefront?

Good luck finding answers. I hope your appt goes well tomorrow.

Speaking of being POTS, try reading a cymbalta pamphlet from walmart (my pharmacy). This medicine may cause dizziness, lightheadedness, or fainting. Alcohol, hot weather, exercise, and fever can increase these effects. To prevent them, sit up or stand up slowly, especially in the morning. Also, sit or lie down at the first sign of dizziness, lightheadedness, or weakness. In form your doctor if you have ....... low blood sodium levels. Use of this medicine is not recommended if you have kidney problems.

Lexapro has a statement that SSRI use has contributed to clinically significant hyptonatremia (low blood sodium levels).

Sound even more like POTS? Hmmmm...makes me not want to take Cymbalta anymore :wacko: And my doc said he thought upping my dosage might be helpful :blink:

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Hi,

Cymbalta is used somewhat frequently I believe with patients with POTS etc. So, it is not uncommon. The drug company has to list all the side effects that occur within their trials. The people with these reactions maybe very different in terms of medical status than the typical POTS patient. It is possible that it could have this reaction to people with long standing hypertension and their body has adjusted to this and then this could lower BP and set off symptoms (this is just an example I tried to come up with with my extreme lack of sleep- so not sure if accurate at all as far as examples go).

So, there is SO many mechanisms behind all of this and "things" (different receptors etc. that do different things that are targeted with these meds). And some of the mechanisms compensate for others, and it is a vicious cycle. So, if someone with POTS has too much of one thing, and the med accurately targets that they may get positive results. Whereas someone without too much of that "thing" takes the med and it lessens the activity of this "thing" then these responses could be seen.

So, it is trial and error to what works for you. Many meds could have these side effects listed depending on what their affect is on the body. So, try to choose your meds first by what the drs. prescribe/suggest, and then what works for you, and not choose because of what the insert includes.

P.S. I have had things listed on those inserts that were bogus. So reader beware. Inform yourself.

Not sure if any of that made sense... I really have now been convinced I need more sleep... Darn Adderall... :)<_<

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