Should Snris Be Avoided By Hyper Pots Patients?

[Annaliese]

I have hyper pots and was put on an SNRI by my dr. Does this sound silly to anyone? SNRIs inhibit the reuptake of noradrenalin and I have way too much noradrenalin when I stand. Wouldn't an SNRI make me worse?

[peregrine]

I worried about that too, and asked the cardiac EP about it when I saw her last week; we had originally thought that my orthostatic stuff and tachycardia were due to Cymbalta until it didn't go away when I stopped taking it. She noted that it (along with Wellbutrin) can be prescribed to help with orthostatic issues, and told my psychiatrist not to worry about med restrictions when prescribing things. Now back on the Cymbalta; orthostatic stuff does seem somewhat worse, but it's hard to say yet.

As a side note, the rheumatologist last week said that if you have problems with norepinephrine (for me it causes tooth grinding (and yes, I have a guard) and insomnia, as well as general muscular tension) you might want to avoid Savella; he said it has 10 to 100 times as much norepinephrine reuptake action as Cymbalta.

[issie]

Made me worse. Lots worse. Was on Lexapro and Wellbutrin together as a treatment for what was diagnosised as Parkinson's - which it wasn't. But, since the normal meds for Parkinson's didn't work - it was an experiment with something else (for a year and a half). Should have guessed it wasn't Parkinson's and I got steadily worse. (Then the doc thought I had multiple system atrophy. And then I went to Mayo and got the POTS diagnosis.) Got better when got off the meds. I'm also HyperPOTS. Only one way to find out though. What works for one, won't work for another and we have to try what ever may help to have the best quality of life that's possible with this illness. It does work well for some. Wellburtrin works on the dopamine levels in the brain. I couldn't tolerate the type that you have to take throughout the day only the XL version that is long acting - it releases slower and I had less side effects from that version of it. FYI. Didn't do well on one without the other either. It's a fine act of balance between the brain chemicals and you need a doctor who is really up on it and who can watch your reactions to get them adjusted properly. I'm better without either of them.

[kayjay]

I would say that I am very hyper POTS- was misdiagnosed with a Pheo. My Plasma and Urine levels are very high.

with that said...Lexapro did nothing for me and Mayo clinic ( rochester ) knowing how high my plasma levels are put me on cymbalta... much better.

Some things with us are very counter-intuitive. For example you would think that I should avoid birth control pills because they can raise your blood pressure, but I am on them and they have helped as well. Also salt helps me. You have choose for yourself but if you do try a SNRI give it time to work.

[icesktr189]

I loved lexapro. At first its terrible, then it worked its miracle on me. I would still be on it if my insurance didnt change.

[Chaos]

Somewhere early on in my research of this topic, I remember reading that Buproprion (Wellbutrin, an SNRI) was one of the first lines of treatment that they used with success for POTS. I believe it was either in one of Dr. Grubb or Dr. Low's articles. It may have been from one of their earlier articles and they've changed their thinking by now.

However, I have both neuropathic and hyper components to my POTS diagnosis. Bupropion is the only anti-depressant I've been able to tolerate. It has worked really well for me. The neuro at Mayo I saw was surprised I was on it and said he'd probably want to change it, but I've been reluctant to do that since it's been working and I had a HORRIBLE time with every other one I tried.

I do best with the SR version of Wellbutrin. I couldn't do the XL version as it woke me up every morning at 4 a.m.

[andersondebra]

Hi,

I tried cymbalta and wound up in the hospital for two days suffering from superventricular tachy. It was a huge mistake for me, but I am also unable to tolerate any type of epinephren, even in dental shots to numb the teeth. It would send my heart racing over 200 beats, so it was a poor choice for my doc to try cymbalta. SNRI contains norepinephren (hence the "N" part of SNRI) which is what supposedly helps with pain (just like in a dental shots) but it also helps to pick up the mood by giving little bursts of ephedrine (a form of adrenaline) to the body, which lowers pain and boosts moods. However, anyone who has heart arythmias or suffer from tachy events, pheochromocytoma, or who have allergic reactions to epinephren or adrenaline should not be prescribed this drug and if it must be prescribed they should be started on the lowest does possible and titrated up and they MUST be watched closely when using this drug.

This same problem is also seen with Buprione (Buspar), which is an anxioltic drug, which means it is specifically used for anxiety, it is less effective for depression unless the depression is caused by PTSD or anxiety. It's major side effects are racing heart and heart palpatations and it too suggests not for use in people with heart arythmias, cardiovascular issues, or Pheochromocytoma, so these drugs need to be used with caution.

Now each of us may suffer from the hyper type of pots but we all may have different reasons for our hyper POTS, and we all may have different types of triggers, so it may do very well in some of us and be very harmful in others, but you will never know until you try it. However, it has been seen in people who suffer from any types of Dysautonomia or POTS, that they are more sensitive to drugs and should always be started on the lowest does possible and then titrated up as long as the patient can tolerate it,

You can find all this information by googling the the specific drug, its side effects, and adverse reactions..

I hope this is the answer for you as it seems to be for others on here, I am still looking for my miracle drug, but good luck to you.

Debra

[issie]

Debra,

I did not know that about the cybalta or the wellbutrion. That explains why my reactions were so awful with it. The doctor kept trying to have me take the wellbutrion with the lexapro for what she thought was Parkinsons and I got incredibly worse. All along my problem was HyperPOTS with too high levels of noriepi. So, taking this increased the noriepi and the tremors and I went on a horrible downhill slide so bad that she then thought I'd live maybe another 10 years with multiple system atrophy. All alone it was the POTS and the medicine was making it worse. Pieces of the puzzle keep going into place. Interesting!!!!!!

Issie

[andersondebra]

Issie-

I did not mention Wellbutrin in my last post but it is also is a drug that amps up the adrenaline in your system, that is why it is used to treat people who are trying to quit smoking, because that extra adrenaline can by pass the nicotine affect that you suffer with when trying to quit smoking. It is also another drug that is highly highly disreguarded for people with heart arythmias, cardio vascular issues, BP issues also and pheo people. I actually believe that it has a boxed warning for these people not to use this drug at all, so I am not surprised that you had such a horrible reaction to it. Normal healthy people suffer with tachy on that drug but their bodies can get used to it in time, for people like us it can be very detrimental.

[kayjay]

One other thing I thought to mention is that any ADD med ( ritalin, etc.) is a bad idea for most with Hyper POTS. I actually asked for it and was told that I couldn't have it ( I wanted something for fatigue). I know nothing about Wellbutrion, but I should have mentioned that Johns Hopkins diagnosed me with pheochomacytoma and sent me to NIH. NO TUMOR!

I have had bad drug reactions, but not with Cymbalta. The excess catecholomines that my body produces is a response to the pots. 3 or 4 positive urine tests for pheo and Mayo and Hopkins did the plasma tests which were very high. Cymbalta has helped me with pain and I take it along with a beta blocker. The bb's block some of what your adrenal glands do. You should definitely consider the combination of medications you take.

I cannot even tolerate coffee ( I miss it ) but I think someone would have to rip my cymbalta from my cold dead hands before I would give it up I agree completely with the other posters that it is best to start very slowly on a very low dose. On 90mgs I started to get some relief! best of luck to you

[yogini]

SNRI or SSRI? SSRIs are used as a treatment for POTS (Lexapro, Paxil, Celexa). They don't work for everyone, but they do help a lot of people. I don't think SNRIs are common as a POTS treatment, and not sure whether they trigger POTS symptoms..

[issie]

The generic name for Wellbutrin is Bupropion. Thanks for the info on that. I know it works on dopamine first and also noriepi second. Wasn't good for me though.

So, could some of the types of medicines given for anxiety make us worse too - like Zoloft and Paxil? I haven't tried that type of med. I do know that some people are on them. What are the results for those on that type of med? How is that working for those with HyperPOTS?

[kayjay]

SNRI or SSRI? SSRIs are used as a treatment for POTS (Lexapro, Paxil, Celexa). They don't work for everyone, but they do help a lot of people. I don't think SNRIs are common as a POTS treatment, and not sure whether they trigger POTS symptoms..

I have HYPER POTS. I take Cymbalta SNRI and a Beta Blocker. Lexapro was awful for me. Mayo clinic believes that my hyper pots is autoimmune. I know that I can't have epinephine ( sorry for the spelling ) or stimulants so the way Cymbalta works is unknown to me. I was afraid to take it at first but again lexapro was horrible for me. Not helpful and all side effects.

[yogini]

See below for description of SSRIs (Lexapro, Paxil, Celex) from DINET site. These have been studied and shown effective to treat POTS - it shouldn't matter if you have hyper or regular POTS. They don't work in all cases and often you have to try more than one (and increase your dose slowly) to get it to work. SNRIs (Cymbalta) aren't listed on DINET. They aren't commonly used to treat POTS, but that doesn't mean they will make your symptoms worse either. In general, many of us are sensitive to meds, so if you think something doesn't sound right for you, ask your dr or pharmacist.

Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution.

[Annaliese]

Thanks for the posts everyone. I can see from the articles on dys that SSRIs are often prescribed, however i tried lexapro and it was a disaster-white knuckle anxiety and hideous diarrhea. In the end i only took 2 pills before i couldnt stand it anymore. Now i am on no antidepressant because i am not wiling to try another SSRI and dont feel i have all the info i need in order to make the right non-SSRI selection. Under no circumstances would I trust a psychiatrist to make the selection for me as none of them have even heard of dysautonomia. The thing i am most concerned about is anxiety, if i get any more anxious than this i think i might explode into tiny droplets of adrenalin. For people suffering from anxiety, what have they found to be the best anitdepressant? My blood pressure gets too low when lying so i cant take anything that lowers BP.would be very grateful for any help.

[Annaliese]

BTW, is AVANZA a tretracyclic or an SNRI? ON wikipedia its listed as a tetracyclic but on other web pages it's listed as an SNRI.

[ramakentesh]

edit

[Troy]

I have hyper version of POTS and anything that tweaks my brian or Autonomic Nervous system seems to cause even a more hyper response. When I tried SSRI's it caused me to become even more overheated and develop fevers, The SSRI's also ruined my sleep and messed around with my blood pressure and gave me more tachycardia. It was horrible for me but it could be different for others and the only way to find out is to give it a try in small dose.

[kayjay]

Ram.. thanks but I will go with what my doctor says... He suspects that my "trigger" if you will... was autoimmune. Since his specialty is POTS and he is an expert at The Mayo Clinic in Rocester MN, where much of dysautonomia testing was developed, I trust his judgement... but thanks for trying to help. Also I DO have postural HYPERtension.

Annaliese, with all of the information and misinformation that gets swapped around on the internet, I would find a good doctor and follow his suggestions. After all that many of us have been though we may feel like MD's but we are not. Good luck!

Also SNRI's do not contain norepiniphrine and Cymbalta is works differently than Wellbutrin. I am not able to take Wellbutrin.

[Annaliese]

I guess i am asking the question about SNRIs for 2 reasons. First, a pure NRI, reboxetine causes a 35 beat increase in NORMAL people at 75 deg tilt ( http://circ.ahajournals.org/content/105/3/347) and second, a genetic mutation causing NET insufficiency has been implicated in some individuals with tachycardia and labile BP. Does a norepinephrine reuptake inhibitor mimic the genetic NET insufficiency? If not, why? Am i misunderstanding something?

[ramakentesh]

Ram.. thanks but I will go with what my doctor says... He suspects that my "trigger" if you will... was autoimmune. Since his specialty is POTS and he is an expert at The Mayo Clinic in Rocester MN, where much of dysautonomia testing was developed, I trust his judgement... but thanks for trying to help. Also I DO have postural HYPERtension.

Sorry my post came across bad.

Dr Low and et al at the Mayo Clinic believe that nearly all cases of POTS are autoimmune. None of the other groups (Stewart/Medows/Ocon, Grubb or Vand. Autonomic Centre) currently accept this. The levels of A3 acetylcholine receptor autoantibodies found in the study published by Mayo were very low and only just above those detected in normal patients, and where only found in 13% of the POTS patients tested. Mayo also released a study suggesting that all POTS patients were the same (there were no subgroups) but data clearly demonstrates that this is not the case.

So I would not accept the contention that this research has definitively demonstrated that POTS has a definate autoimmune basis in even some cases, and in the cases that it does it is expected that there would be an increase in peripheral blood flow rather than excessive vasoconstriction, increased peripheral resistance and postural hypertension. Neuropathy does not result in excessive receptor activity.

People here seem to assume that there is a fixed understanding of the causes of POTS that is agreed upon by the wider medical community - and in particular autonomic specialists. This is definately not the case. Only recently was one study from one group replicated by another - in most other cases the results are paradoxical or confusing.

As an example, how could your doctor to explain how an autoimmune-mediated neuropathy - that is a reduction in either alpha adrenergic receptors or a3 acetylacholine receptors results in 'excessive' sympathetic drive and postural hypertension. Both of these autoimmune mediated neuropathies would result in a reduction in sympathetic outflow rather than sympathetic excess.

I dont want to sound irritating, but I am quite sure that if you went to a different autonomic centre and got evaluated, you would get a very different opinion and diagnosis - which are all prettymuch meaningless anyway until further research demonstrates their validity.

Hyperadrenergic POTS - as used by Grubb and to a lesser extent - Vand and Stewart et al refers to a condition primarily caused by excessive sympathetic activity either from deficiencies in NET expression or because of elevated angiotensin II levels (Low Flow POTS).

its interesting to note that Grubb's group were looking at a type of hyperadrenergic POTS caused by beta 1 receptor autoantibodies agonising beta 1 receptors but this more like inappropriate sinus tachycardia.

Antibodies to ace2 have been recently identified, offering another potential autoimmune pathology in primary hyperadrenergic POTS but this is highly conjectural.

[ramakentesh]

The genetic defect in NET activity has only been described in a set of twins, only one of which exhibited obvious symptoms of POTS. Therefore the study group conceded that other factors were potentially involved as well as the NET function defect in her POTS (from the study by Shannon 2000).

NET inhibition in the peripheral vasculature results in excessive sympathetic activity. NET inhibition in the central nervous system results in reduced sympathetic outflow. After ten years of continued study on NET defiency it is still pretty unclear on whether this is a primary cause of POTS. Although this study may be of interest:

http://circep.ahajournals.org/content/1/2/103.short

Altered angiotensin II catabolism could also result in changes to norepinephrine reuptake and transporter expression.

So my answer to your original question is that its hard to say

[ramakentesh]

Also as an aside, Kava kava has SNRI activity and is often listed as a substance to avoid with OI.

[Annaliese]

Ramakentish.

Thanks for your reply to my post. I find it very interesting reading your responses. Re your above post: I agree that neuropathy cant cause high standing blood pressure but mast cell activation disorder (which is an autoimmune response) can.

Have you seen this article?

http://www.ncbi.nlm.nih.gov/m/pubmed/15710782/

In my dysautonomia case i got pregnant, my standing blood pressure and hr became high and at the same time i had symptoms of excessive sympathetic activity (huge anxiety, light/sound sensitivity) but also flushing, polyurea and diarrhea, food intolerances. The diarhea and polyurea dont fit in with excessive symp activity so i suspected mcad but didnt understand how it could cause high BP. Then i found the above article which explains how tht can occur. I also have fibromyalgia which is suspected to have autoimmune origins. So, in my case i am 99 percent sure i have autoimmune disease but that this has presented counterintuitively as high standing BP. Interestingly, my sympathetic symptoms have calmed somewhat over the last year and i now have low BP. I think the low bp might be caused by neuropathy as i have tingling on my lower legs. Sustained mcad, in my opinion, has caused this neuropathy. Id be interested to hear what you think about this article. BTW it is my suspicion that many people with dys DO have autoimmune disease as they seem to have associated medical problems which are known autoimmune diseases. One thing im trying to get a consensus for is does a negative autoimmune test mean that there are no autoimmune diseases taking place? My understanding is that a negative test means that the person does not have a KNOWN autoimmune disease. At least this is what a number of drs have told me. Ramakentish, do you mind if we keep chatting? As i said, i find these discussions very helpful. For example i did not realise that there is a disparity in the effects of NET inhibition centrally as compared to peripherally. What i really need to do is read more but i find it difficult since i have young children and am quite ill. Thanks again. BTW, you seem to have some science knowledge, do you mind me askng what your background is?

[ramakentesh]

d