Angela Posted March 13, 2013 Report Share Posted March 13, 2013 so i started this today, 150 mg 24 hr release to maybe help my pots but i really want to quit smoking. i feel like horrible, like super amp'd wired but can't get myself to do anything, i feel frozen. my neuro started me on the low dose (yes, i proposed the whole thing in the first place due to high bp/smoking is related) but wondering if this is normal. i have the normal side effects he mentioned, not being hungry, a little more dizzy, but when i looked it up it said something about bp going high which is not what i want since i am hyperpots plus causing tachy, albeit he is consistently worried about my bp more than tachy. i know it's the first day, so give it a day or 2 more but kinda freaked out.i've looked it up and saw that several pots patients take it, well at least wellbutrine and they have mostly "disappeared" from the forum. is there anyone out there right now who takes it? I know it is on dr. Grubb's list of meds for Hpots. i dont get it since i also take clozenapam which helps the anxiety effect of POTS for AD surges. don't know how outdated that study was by Grubb. Do know that i am feel like I am on speed tho. my vitals are good, last i tested, but then again i ran out of triple A batteries so who knows. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 13, 2013 Report Share Posted March 13, 2013 I'm on it. It's still one of my "favorite" drugs. Tried weaning off it and that was a disaster for my POTS symptoms. Definitely need the dopamine but can't handle additional seratonin in an SSRi/SNRI. FWIW, I couldn't tolerate the XL version. More because it was like an alarm clock would go off in my head every morning at 4 am and that was the end of being able to sleep. The SR version however didn't cause that issue for me. A very smart MD friend of mine explained that there was a different amino acid that they used in the one vs the other and that the chemistry of the one vs the other actually could explain why I could tolerate the one and not the other, even though it seemed to me that it shouldn't make that much of a difference. It did though and when I changed back to the SR, that issue disappeared.Currently I'm taking 75mg twice a day instead of the 150SR so that might be another option for you to consider. Personally when I started this med, it was the easiest med I ever started. Had no side effects, felt totally normal- just GOOD! None of the miserable side effects I had with every other SSRI/SNRI I had tried prior to this. Good luck! Quote Link to comment Share on other sites More sharing options...
Angela Posted March 13, 2013 Author Report Share Posted March 13, 2013 shoot, day one in and major side effects i think. not sure about short relief either, more maintenance yeah? Chaos, and are you on generic or actual wellbutrin? I went on so many forums too. *****, they say from what i gather that not having extended release causes huge bouts of anxiety for some. i am primarily trying to quit smoking but was dreaming it would help my pots after looking at old old forums and faces that have been on this and have dissapeared on dinet, i was thinking for the reason they found a cure, i figured cuz they got better. how exactly does this help you with hpots? other than the dopamine factor. does it have to do with NET? why do I feel so "strung out"?????????? Chaos, I think I already know but am too worn out to figure out if you are hyper or hypo but I think my memory recalls hyper but don't experience high bp necessarily? i hope i don't have insomnia/sleepwalk tonight and tomorrow is better. well, i probably rambled long enuf...sure i'll be alive tomorrow like the rest of us:) Quote Link to comment Share on other sites More sharing options...
Angela Posted March 13, 2013 Author Report Share Posted March 13, 2013 um, sorry, didn't think to look at your quite spelled out history. oh well maybe tomorrow is better! thx Chaos. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 13, 2013 Report Share Posted March 13, 2013 I've been on it for about 3 weeks now, and I'm feeling somewhat jittery, but I have more energy. Actually, it hasn't done anything to increase my B/P, since I was hypertensive before this. The reason I am on it is to help with my libido. But now I have bladder spasms again, so I don't think that is going to help in that department. I'm sticking with it for my husbands sake It supposedly takes about 4-5 weeks to get the full effect. I hope it gets a little better. I like increased energy, but I'm sleeping ok, since we are going to bed earlier, waking up some, but with the time change, it's hard to tell. I'm also on klonopin. I'll keep you posted!! Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2013 Report Share Posted March 13, 2013 I've been on it for about 3 weeks now, and I'm feeling somewhat jittery, but I have more energy. Actually, it hasn't done anything to increase my B/P, since I was hypertensive before this. The reason I am on it is to help with my libido. But now I have bladder spasms again, so I don't think that is going to help in that department. I'm sticking with it for my husbands sake It supposedly takes about 4-5 weeks to get the full effect. I hope it gets a little better. I like increased energy, but I'm sleeping ok, since we are going to bed earlier, waking up some, but with the time change, it's hard to tell. I'm also on klonopin. I'll keep you posted!!Kim, there is an herb that is supposed to help in that dept. I have heard that it works wonderfully for some, its called Suma. Issie Quote Link to comment Share on other sites More sharing options...
Angela Posted March 13, 2013 Author Report Share Posted March 13, 2013 update, I hardly got sleep last night, was late to work but no jitters/anxiety today. Maybe that's cause I am tired LOL! Quote Link to comment Share on other sites More sharing options...
issie Posted March 13, 2013 Report Share Posted March 13, 2013 Time wll tell. Keep us posted.Issie Quote Link to comment Share on other sites More sharing options...
Anoj Posted March 14, 2013 Report Share Posted March 14, 2013 How is it going? Please keep us posted. I am interested in your outcome. I tried this before unsuccessfully but am interested in trying again. I got zombie/freeze feeling but wondered if it would eventually go away if I were more patient. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 14, 2013 Report Share Posted March 14, 2013 Thanks Issie; I will look into that. I hate being on all these medications. I actually tried a topical agent at a compounding pharmacist, with some vasodilators in it, and other ingredients I looked up. Can't remember them all, and it helps some, but I don't have any desire at all, and I've never been like this. I think my beta blocker is the culprit, but I need that desperately. It's the only thing that makes my tachycardia go away most of the time. Still have wacky heart rate during exercise. I just watch it and slow down, when it happens. My heart rate can go over 200. It's really the only side effect I've had from my meds, except for this one, but I'm giving it at least a month. That's what I did with my first beta blocker, but I was the "walking dead" on atenolol. I'm much better on Nebivolol.Angela, I slept fine last night for 8 hours, so I believe when my husband sleeps well, so do I. He is suffering with tendonitis, and it wakes him and me up, when he doesn't take the aleve before bed!! Rest assured,(excuse the pun), I will gently remind him every night! Quote Link to comment Share on other sites More sharing options...
Angela Posted March 14, 2013 Author Report Share Posted March 14, 2013 Hey Anoj, day 3 and I feel much better. The tired/wired feeling was gone the second day and don't have it today as well (yay) I am a little more irritable today tho, not sure if that is the med or just my mood today. Quote Link to comment Share on other sites More sharing options...
issie Posted March 14, 2013 Report Share Posted March 14, 2013 Kim, something else that I've read about is Maca. The two things may work wonders. Let us know. Issie Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 14, 2013 Report Share Posted March 14, 2013 I can't take any of those meds. My doc has a big alert in my chart. They make me all wired up, almost like I'm emotionally on roller coaster, then nightmares start with vivid dreams. I won't take them ever and it needs to be known incase I can't speak for myself. Now I might be wrong, but Issie, I think you posted a link on Mast cells disorder and meds not to take if you have it. I was reading it around 3 am and I thought that ssri's was on there. I Thought for me at least, Well that finally makes sense. Anyway, check that link out if you haves at cell also.I hope you feel better soon. I wish there were no side effects. I don't take many meds that could help because of all the side effects. : (HUGS Quote Link to comment Share on other sites More sharing options...
Angela Posted March 14, 2013 Author Report Share Posted March 14, 2013 Bella, which meds are you talking about? I thought Issie was talking about herbs. from what I understand wellbutrin is neither an SSRI or SNRI I read somewhere it was classified as an NDRI, a a norepinephrine and dopamine reuptake inhibitor Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 14, 2013 Report Share Posted March 14, 2013 I was talking about wellbuition bothering me. Then I mentioned ssri's and what they did to me. I went looking for the post and link and it wasn't saved in my bookmarks : ( Sorry ) : I do think it's interesting how certin meds Agitate our nervous system. I refuse to keep taking meds that an already confused Autonomic system can't tolerate. I'm thankful that I finally have a team of doctors that see this now. Quote Link to comment Share on other sites More sharing options...
issie Posted March 14, 2013 Report Share Posted March 14, 2013 I bumped two threads on mast cells and SSRI's. One thread -- Mast Cell Articles --the other, under B-12.The herbs I'm talking about here are for sex drive and more enjoyment.Issie Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 14, 2013 Report Share Posted March 14, 2013 Issie, I think I'm confused sorry : ( I can't find what I was reading on the middle of the night. I never should have said anything before checking the article. Please, forgive me. I hate it when that happens. I thought I saved it and was so sure and now can't confirms facts. Sorry everyone. Got to stop waking up at 3 am and finding a cure. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2013 Report Share Posted March 15, 2013 Hey --it just made me look up what I had written. Ha!Ha! No problems ---we all want answers.Issie Quote Link to comment Share on other sites More sharing options...
Orthohypo Posted March 15, 2013 Report Share Posted March 15, 2013 But now I have bladder spasms again, so I don't think that is going to help in that department. I'm sticking with it for my husbands sake Belladonna can help with bladder spasms. I took it as a homeopathic remedy - don't know if there's another way as in capsules. Quote Link to comment Share on other sites More sharing options...
Orthohypo Posted March 15, 2013 Report Share Posted March 15, 2013 Kim, something else that I've read about is Maca. The two things may work wonders. Let us know. IssieIssie, is the Maca supposed to help with lack of libido? I got some for more energy in the afternoon but when I tried it one day I was really wired and afraid it would cause problems with my medications. I asked the doctor but she got onto other topics and I didn't get an answer that time. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2013 Report Share Posted March 15, 2013 Yes, I tried the Maca - it can create more energy. It was too energizing for me and didn't see that it helped the sex drive - desire. But, the Suma (also take in the day) is wonderful . But, both -- according to the literature that I've read --help some. I've read that Maca is also used by men.I also recently read that Maca is good for depression ---can't remember what it works on though ---bit of brain fog moment. Issie Quote Link to comment Share on other sites More sharing options...
Ash Posted March 16, 2013 Report Share Posted March 16, 2013 I did a trial run for a month on the generic SR and love, love, loved it! So far it has been the only thing I noticed a difference with (I only stopped because we are TTC) but the OBGYN and cardiologist gave me the go ahead to get back on it until we get a positive Pg test and then we will go from there. I would take one dose at 7:30 and the other at 2:30 and it would boost my energy (the reason the dr wanted me to try it) originally the internist I saw for CFS (didn't know anything about POTs) was the one to prescribe it. I would still feel tired while on it but it was like it pushed me to still be able to do stuff (like I harnessed the jittery feeling) the reason the internist picked the SR is because I have severe insomnia and the hope was it would wear off before bedtime (which I did notice better sleep while on it...Maybe because I was more active during the day?) the one side effect I did notice while on it was it did decrease my appetite more than what it is normally and was more consistently nauseas after eating while on it, but I deal with those things on a pretty regular basis any way so it wasn't enough to make me stop taking it. Hope things are continuing to go better for you with taking it : ) Quote Link to comment Share on other sites More sharing options...
Angela Posted March 16, 2013 Author Report Share Posted March 16, 2013 faring well day 6. I started my Ubiquinol again which i was off due to not wanting extra jittery nervousness. still smoking tho, but i read it takes usually 2 weeks to build up in system to quit so hopefully that's true. I sleep well, seems like it takes me longer to fall asleep. no nausea, dizziness hives or other side effects so far. sometimes I feel stoned/happy buzz tho, but guess thats the dopamine! went to home depot today and grocery shopped and don't feel like I need to crash out yet. so, for me it's not as bad as it was when I was trialing beta blocker, i think possibly helping with oi (hypertensive, although i read that med can increase hypertension so IDK) and lowering my bp, which is odd. but that varies depending on stress level/time of month so I'll see. can't bet on anything after only 6 days. Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2013 Report Share Posted March 17, 2013 Good going, Anglea ----You GO GIRL!!!! Glad things are good so far ---good sign.Issie Quote Link to comment Share on other sites More sharing options...
Anoj Posted March 17, 2013 Report Share Posted March 17, 2013 that's good to hear, angela. did you stop feeling dizzy or like your brain was stuck? i can't remember how you described it earlier ... Quote Link to comment Share on other sites More sharing options...
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