wareagle Posted April 11, 2012 Report Share Posted April 11, 2012 Hi guys,I've decided to give SSRI's a try this summer. I spoke with my doctor and he said I may want to try a SNRI instead.Any experiences or insights on the differences? I don't have Hyper POTS so I think I'd be okay with the extra norepinepherine.Thanks for the input! Quote Link to comment Share on other sites More sharing options...
kayjay Posted April 11, 2012 Report Share Posted April 11, 2012 I have very hyper pots- was actually misdiagnosed with an adrenal gland tumor bu Johns Hopkins and sent to NIH. Mayo clinic's plasma tests on me confirmed hyper pots. I take cymbalta snri, Lexapro ssri did not help. I am also on a beta blocker. I tell you this because I think you need to find what works best for you. My hyper pots is not effected by the cybalta and it gives me pain relief that lexapro did not.Everyone is different, but if you trust your doctor, you may want to try what he suggests. I have not had any problems on a snri, but again I take nadolol too. Quote Link to comment Share on other sites More sharing options...
Darlene Posted April 12, 2012 Report Share Posted April 12, 2012 ssri (lexapro) works great for me. i did try an snri, and it made my symptoms worse. Quote Link to comment Share on other sites More sharing options...
yogini Posted April 12, 2012 Report Share Posted April 12, 2012 What are you taking them for? I believe SSRIs have been studied for POTS and shown to be effective. SNRIs haven't, but I believe some people take them for pain and other reasons. I take Paxil for POTS and it has worked wonders Quote Link to comment Share on other sites More sharing options...
corina Posted April 12, 2012 Report Share Posted April 12, 2012 I'm on Paxil too (=Seroxat in my country), 20mg per day works best for me. I don't have any side effects. Hope this helps! Quote Link to comment Share on other sites More sharing options...
wareagle Posted April 12, 2012 Author Report Share Posted April 12, 2012 Thanks guys!I fortunately don't have any pain issues so I wouldn't need the SNRI for that.I'm just looking for something to give me an extra boost as far as energy and overall stability if heart rate.I've been reluctant to try SSRIs for years, but I've tried all of the other viable medication options. Just want to make sure I'm functioning at the best level my body is capable of. Quote Link to comment Share on other sites More sharing options...
yogini Posted April 12, 2012 Report Share Posted April 12, 2012 I would ask the dr why he recommends an SNRI over an SSRI, because the SSRI is for POTS as far as I know. I too was hesitant to try SSRIS. I had some luck with other treatments, but it ha been by far the best for me. I tried Paxil 4 yrs into POTS and regret I hadn't tried it sooner. No side effects here. Good luck! Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted April 12, 2012 Report Share Posted April 12, 2012 I took effexor (venlafaxine), which is an SNRI for years for depression. It was wonderful in alleviating my depression when I needed it, but I had extremely bad withdrawal from it if I even took it a bit late in the day. It did help with aches and pains and energy, but I don't know that I would go on it again just because it was such a long and difficult process to get off of it once I no longer needed it. If you have a knowledgeable doctor, you might ask about what medicines have bad withdrawal because I know many of us are very sensitive to medications and I think that made the withdrawal worse in my case. Good luck finding the best option for you! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 18, 2012 Report Share Posted April 18, 2012 SNRIs and SSRIs both work ok in non hyper patients according to Grubb, while other research groups suggest caution with SNRIs due to findings of reduced NE reuptake already in some patients. Quote Link to comment Share on other sites More sharing options...
Hoosierfan Posted April 18, 2012 Report Share Posted April 18, 2012 I am on Effexor (SNRI) for NMH (not POTS), and it has been the most effective treatment for me. Helps keeps my bp up and seems to even out my nervous system too. (I have anxiety that goes along with the NMH, chicken and egg thing!). Higher doses gave me brain fog and headaches, but I was able to find a mid-level dose that worked for me.I will ditto the withdrawal issue -- I tried to go off of it a few years ago and stuck with the withdrawal for about 6 months and then just couldn't take it anymore (had lots of syncopal episodes, and anxiety went through the roof). Docs weren't sure whether it was "withdrawal" or I actually needed the med. (Grrrr). But, either way, the withdrawal is not fun and can take a long time. I also had a "psuedo" withdrawal last year when my insurance co switched me to the generic from the brand (and didn't tell me). Suffered horribly for about 7 months. All that's to say that the SNRI has been very effective for me, but know that these are not meds that are easily discontinued and once you find one that works, insist on a brand of that med because the generics have so much variability that expecially for us with the sensitive nervous systems, those "bio identical" differences can be HUGE!!! I've just accepted that I'm probably a lifer for one reason or another. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 21, 2012 Report Share Posted June 21, 2012 i am going to my doc today to discuss my SSRI. my main problem is weight gain. i have heard that SNRIs aren't as bad for weight gain. but, i'm hyper POTS, so does that mean i should stay away from an SNRI? has that ever been stated by any doctors or research?i was on effexor a long time ago for postpartum. if i was late with my dose, i got horrible brain zaps. then, i started getting the brain zaps earlier and earlier, even if i wasn't late on my dose. this is scary to me. they say these drugs aren't addictive? then why was my body building up a tolerance? at the time, i didn't know better so i got off cold turkey. it was so bad.anyway, i don't particularly want to deal with SNRI withdrawal again. i have found that getting off of zoloft is way easier. if i could just find some way to deal with the constant hunger, i'd be ok. i began weaning off of zoloft to try to get my weight under control. i'm at half dose now. but my POTS is much worse! i have come to the conclusion that i need to be on some sort of AD. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 21, 2012 Report Share Posted June 21, 2012 Anoj, I posted a 2011 study from Dr. Gubb on the forum yesterday, where he shows the response hypers had to certain meds. All the ones you are talking about are there. Go to my post and take a look at the article, it might be something you want to take to your doc. Interesting though only 4 took it they all rated adderall at 100% Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 21, 2012 Report Share Posted June 21, 2012 i just read that! thanks for posting the article... i found it very informative. so adderall at 100% means everyone who took it had good results? i get dizzy when i take stimulants, so i don't know if that would work for me. it is basically the ONLY type of med i have not tried. the article also seems to indicate that hyper patients respond well to SNRIs. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 21, 2012 Report Share Posted June 21, 2012 True, but don't forget that was only 4 patients that took the adderall and it looks like they only looked at patient response on 27 patients. Well the percentage for the ss's were better then some treatments but really were closer to 50/50. Really the article was not a lot to go on, but at least it is something. It was just a review of one centers patients.I was told by one doc to do lexapro, but when she found out I went up she suggest effexor, which grubb has used as well. That was early on though and I have been resistant to taking that class of drugs. She also freaked me out by saying if you go up then there are many things that could be wrong with you including a cancer I think that carcinoid kind, you need to go to Mayo and find out what is wrong with you. She was right, but she scared the sssss out of me and I couldn't go to mayo. So, I had to chase down doc's on plan which took me to grubb and vanderbuilt. I got lucky and a local autoimmune neurologist actually figured out the sfn and then the immune defect and got me on the right treatment. He also ran all those scary test the other doc mentioned without me even bringing them up.It has been a long journey and I still am not where I want to be. I want to know what normal feels like. I'm in accepting mode now, cause at this point it probably ain't going away. I think as the research progresses management will get better. That will happen because patients are better informed and can know push the doctors into new direction and understanding.As my doc said "What you have though considered rare, I don't think is rare at all!" I laughed and said yes, just rarely diagnosed. He nodded yes! Quote Link to comment Share on other sites More sharing options...
McBlonde Posted June 21, 2012 Report Share Posted June 21, 2012 I've tried every single SSRI and gained weight all of them.75mg of Effexor worked for me...and lost weight on it. I couldn't any higher dose. I went off of it in February just in case I had testing this summer. I can really tell a difference. If I see my husband coming at me with a piece of mail in his hand I panic... A neighbor asked me how I was today and said she was praying for me and the tears came. ......obviously wacko over-responses, lol... My guess is that the Effexor kept me even before and I just didn't know it.I tried Dexedrine and it knocked me out like a sleeping pill (how crazy is that!!) I'd like to try Adderall to see if I could get my concentration and ability to read back. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 21, 2012 Report Share Posted June 21, 2012 True, but don't forget that was only 4 patients that took the adderall and it looks like they only looked at patient response on 27 patients. Well the percentage for the ss's were better then some treatments but really were closer to 50/50. Really the article was not a lot to go on, but at least it is something. It was just a review of one centers patients.I was told by one doc to do lexapro, but when she found out I went up she suggest effexor, which grubb has used as well. That was early on though and I have been resistant to taking that class of drugs. She also freaked me out by saying if you go up then there are many things that could be wrong with you including a cancer I think that carcinoid kind, you need to go to Mayo and find out what is wrong with you. She was right, but she scared the sssss out of me and I couldn't go to mayo. So, I had to chase down doc's on plan which took me to grubb and vanderbuilt. I got lucky and a local autoimmune neurologist actually figured out the sfn and then the immune defect and got me on the right treatment. He also ran all those scary test the other doc mentioned without me even bringing them up.It has been a long journey and I still am not where I want to be. I want to know what normal feels like. I'm in accepting mode now, cause at this point it probably ain't going away. I think as the research progresses management will get better. That will happen because patients are better informed and can know push the doctors into new direction and understanding.As my doc said "What you have though considered rare, I don't think is rare at all!" I laughed and said yes, just rarely diagnosed. He nodded yes!what is the treatment for SFN? i have that too. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted June 21, 2012 Report Share Posted June 21, 2012 I am still trying to get an official POTS diagnosis, but my GP did put me on Celexa two weeks ago to see if it will help with the fatigue and lightheadedness. My brain fog has been a little better, but I am still really sleepy, and lightheaded anytime I am upright (feel like I am going to pass out at least once a day). I started out taking 10mg, and then went to 20mg last Friday. Saturday I was playing with a new heart monitor/watch, and my heart rate was 48. I checked it with a blood pressure monitor, and even after walking up the stairs it was 56. I normally have a resting heart rate of between 70 and 95. So, my husband was quite worried. I haven't seen it drop back down since this weekend, but I work, so I think my heart rate doesn't get a chance to drop quite as low as it does when I an vegging on the couch trying to recover on the weekends. The neurologist I have seen told me it can take four to six weeks to see the full effects, so I am trying to be patient. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 21, 2012 Report Share Posted June 21, 2012 well, i left my dr's office today with a small dose of adderall (5 mg). it's the only thing i haven't tried yet. well, basically. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 22, 2012 Report Share Posted June 22, 2012 Oh good about the adderall is that a high or low dose? Did you take that article to him? I know a lot of us start with half a pill if it can be split before working up to full dose. I did that with my plaquinel, what you doc say about that?Treatment for SFN is also like pots it depends on the cause of it many things can cause it. The most common cause is diabetic neuropathy, which means treating the diabetes right should help. Mine was autoimmune so we first did plasmapheresis which did improve my autonomic function and help confirm it was autoimmune, I then got an infection and anemia, blood on that showed the cvid/hypogammaglobulinemia and I now infusions to replace those, I also have to treat the companion autoimmune disease.Some forms of sfn may not be reversible that damage from toxic exposure. A good doc will try to figure out the cause and what type of sfn it is mine is more autonomic in nature and for me those symptoms came first. A lot of the research due to the diabetic element believe the periferal neuropathy comes first and don't know that they have that right though.Hope that answers your question. Quote Link to comment Share on other sites More sharing options...
Anoj Posted June 27, 2012 Report Share Posted June 27, 2012 i did take the article to him. he's just my GP, but he's willing to experiment and has a great bedside manner. he knows i'm not a druggie - in fact, i hate taking anything at all. he gave me a really low dose, but i split them into quarters. to my amazement, i tolerated it well. usually stimulants cause me to be dizzy/sleepy, but this didn't. i did quit taking them today however, because i'm weaning myself back onto my zoloft. once that settles, i'm gonna try the adderall again. Quote Link to comment Share on other sites More sharing options...
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