abbyw

I never had a TTT, but you certainly sound like you have POTS and I'm happy you found a doctor who knows about dysautonomia. From other posts, I think that they will lie you back down if they see you are fainting. I just wanted to answer your question about sudden onset. There are lots of us with sudden onset. I was also fine one day and dizzy all the time the next. A five minute walk had me lying on the couch to recover for hours, when the previous day I had been taking my half hour speed walk as usual.

Hi, I live overseas and there is no POTS specialist here. My doctor is very willing to learn, but I need to point her somewhere. Is there any POTS specialist that you know of that will accept phone or e-mail communication with my general doctor? And how would I get their contact information? Thanks, Abby

Hi, I have had POTS for a year now, and have never experienced flushing. I had lots of dizziness all day, pre-syncope, fainted once, exercise intolerance, feeling jittery or wired all the time, and I was always freezing in my bones, no matter what I did.(It was winter when it started.) My BP would go up more than 30 points when standing. But that was it. (As if that's not enough!) I know a lot of you have it much worse. I was doing well on Lexapro - I would say 90% back to myself other than getting worn out much more quickly than I used to and not doing well after a lot of walking. I am 3 weeks in to switching to Effexor due to ridiculous weight gain on Lexapro. When the Lexapro was out of my system, I immediately felt POTsy again, but I upped my Effexor a bit, and I was doing OK. Not as well as on Lexapro, but it was only a few days into the new dose, so I was being patient. Last night, I came home from an exhausting day with lots of travel. I ate some hot soup and it was pretty hot in my house. I felt really hot, but that was normal. Until everyone in my family started asking if I was in the sun all day because my whole face was red like a tomato! I felt "fuzzy" ish ( I know , not very medical - but I can't think of another word - a bit dizzy, and woozy, but I was OK). The redness did not go away for 2 hours or so. Then I noticed that my legs were all red and blotchy as well. I assume that this is the "flushing" that a lot of you had spoken of. (There were reasons to flush - it was warm in here, and I did eat hot soup - but no one else in the room was bothered by it other than me.) Can this indicate what kind of POTS I have? ( I don't have any other indicators of any auto-immune problem or MCAS/MCAD.) I am not overly flexible, I would say the opposite . Thanks for reading all of this and the help. I don't have a doctor who knows anything about POTS. This forum is where I get my info and I go to my dr. with what I find out! Thanks! Abby

Rama, - in your opinion, based on this study, why would SSRIs help people? Just got this from Wikipedia: Due to its tendency to increase blood pressure and its modulative effects on the autonomic nervous system, venlafaxine is often used to treat orthostatic intolerance and postural orthostatic tachycardia syndrome.[18] Also: At low doses (<150 mg/day), it acts only on serotonergic transmission. At moderate doses (>150 mg/day), it acts on serotonergic and noradrenergic systems, whereas at high doses (>300 mg/day), it also affects dopaminergic neurotransmission.[7] Does that mean that the SSRI/SNRIs are treating the symptoms but not addressing any of the possible underlying causes? Thanks, Abby

Interesting answers, everyone! But I am still confused about cause and effect here. Meaning- do we have POTS, which is causing the neck pain and then the yoga helps for various reasons, or do we have some pressure point or narrowing of passageways in the neck which are causing the POTS symptoms. Is it really possible that with some neck adjustments and stretching, this could all go away ?!?! That would be pretty sad that such a simple thing could cause the last year of my life.....

Thanks for the replies! I knew that Effexor was the worst one to wean off of before I started, but my doc said that that should not govern my decision to try it. It has the best chances for no weight gain. My doc also wants me to stick with the quick release version until i get the dose figured out.Hoosierfan, based on your advice, I may stick with the regular version and not the XR. Hugues SC, I agree about the doctors - it is very humiliating to have a dr tell you that it is anxiety when you can prove that it isn't. i have had pre-partum anxiety in the past - and this is not that! There are no anxious thoughts involved here, and my hr jumps over 30 points on standing. But, unfortunately, my dr choices are limited and she is very helpful, so I have to deal with what's available....

Hi Lemons, Glad you are doing well overall. I can't answer most of the questions (I never count calories, and I am a big "snacker".) But, I do know that the amount of serontonin in the gut is supposedly more than in the brain and that is why they sometimes treat IBS with SSRIs. I thought that I remembered that you were taking Lexapro - are you? Did it affect your gut? Thanks, Abby

Hi, I am bravely trying to switch from Lexapro (SSRI) to Effexor (SNRI) due to ridiculous weight gain. I gained 22 lbs in around 10 months! I was on a very low dose of Lexapro - 6mg (5 one day and 7.5 the next day). Do any of you take Effexor, and if so, what dose do you find effective? My dr. (who knows zero about POTS, and still basically thinks I have anxiety) prescribed 37.5 mg twice a day. I was wondering if this dose is high enough or if I would need to go higher. Meanwhile, I am struggling with the adjustment - more jittery, and feeling very depressed. And I am not sure if the jitteriness is my POTS symptoms returning, or the adjustment to the new med. Thanks for the help, Abby

Hi, I have read several posts here about neck issues. I know that my POTS symptoms started at the same time as I had terrible neck pain. I still have some neck pain and lots of clicking. But I always thought that they were 2 unrelated issues. I am wondering if any of you heard of anyone who resolved their neck issues and their POTS at the same time? Thanks! Abby

Hi, I take a very small dose of Lexapro. It has helped tremendously! I think that lemons also found it helpful. I went from being almost non-functioning, to almost completely back to myself. The first few weeks were absolutely horrific - like alex74alex explained. I felt like jumping out of my skin at the same time as I felt like I was runover by a truck, nauseous, dizzy - the works. But I took a valium like thing to help me push through. Then around 4 weeks in, I began to see the light at the end of the tunnel. At 8 weeks, the side effects were mostly gone. I still have some side effects - really weird dreams, poor sleep, and weight gain, but I have my life back, so I am grateful. Abby

Right before I developed POTS, or maybe it was the beginning, I had terrible stomach problems. Whenever I would get a severe bout of diarrhea, I would have pre-syncope feelings. I would get really hot and flushed, and then start feeling really foggy and like my heart was racing. It would continue for a while after, and then calm down. Recently, I had a horrible experience (in a dr's office) where I got a terrible stomach ache. Along with it, I thought that I was going to pass out in the dr's waiting room bathroom. I had to keep splashing myself with cold water to keep from losing consciuosness. I was sweating all over and my legs were shaking. Not the same symptoms as yours, but definitely pre-faint. The only thing I can tell you is that it passes.

I wanted to try the same. I am not hyper as far as I know, but my dr. didn't want to switch me to it because she said that one of my major symptoms prior to meds was that jitteriness, so she didn't want to put me on something "energizing". But,take that with a grain of salt, she knows nothing about POTS, and still suspects it all may still have been anxiety....

Yes, when I turn my head, I often hear a "click". But not sure its related to POTS. I did have a bad pain in my neck for a few days before my POTS started, but somehow I think it is coincidence. If it isn't and all I need is a neck adjustment, that would be pretty sad....

Lexapro definitely helped me. I would give it 6 full weeks. At 4, I saw the light at the end of the tunnel, but those first few weeks were very rough, and I needed a half of a Benzo here and there to get me thru it. Once the 6 week mark hit, I didn't need the benzo again. I hope it works for you!

I also don't know. Sudden onset. Self- diagnosed. I don't have a doctor who knows anything about it either, so I wouldn't even know how to go about testing. Symptoms are managed now with an SSRI, but I am a person who needs to understand "how" this happened. I feel that something must have caused this. I wish I knew how to get to a doctor who would try to help me. (I live overseas, and the Pots "expert" I went to here tested me with a poor man's tilt when I was on the SSRI, and told me that I must have felt ill because I have 7 kids and a job, and I should try not to think about it so much.)

Hi guys, I spoke to my dr today, because we were considering switching me from Lexapro to Effexor. I am feeling really good on Lexapro in terms of POTS, but I have gained 9 kilos (over 20 lbs) in 7 months,it is really affecting my sleep, and I am really fatigued all the time. The good news, is that she says we can cut Effexors in half, so that may be an option for you, McBlonde. The bad news, I am worried that the SNRI may not work for me the way the SSRI does, like Jangle said. I am scared to try, but I am scared not to. (I am trying to get it all - to feel well, not be exhausted, and not be fat!)

Funny, I was just thinking of switching TO Effexor because of the weight gain and fatigue on Lexapro.

Well, its an SNRI - so it is affecting serotonin and norepinephrine levels, which may explain the IBS as well as the POTS. The gut has lots of serotonin receptors. It almost seems like you may be on too high a dose. It usually takes weeks to feel the full effects, and you felt them immediately, and then had poorer results later on. Also, the time of day you take it may be affecting the fatigue. It is something you have to play around with. Good Luck!

Hi, I'm taking Lexapro and it has really done wonders. But I have gained approximately 20lbs in 7 months. Did anyone try Effexor or another SSRI/SNRI that does not cause wight gain and see results? Thanks, Abby

Thanks everyone for your replies - you are making me feel more "normal". Hippychic - I am taking Lexapro, an SSRI, which has me almost back to normal. If I overdo things, I will be totally exhausted for days afterwards, but I am able to manage regular life - job, house, kids, shopping - pretty well. I have now gained 20 lbs in the 7 months on the med, but at this point, I am willing to pay the price compared to life before the med. Before, walking two blocks to catch a bus had me in pre-syncope for the bus ride home, and walking for 10 minutes had me lying on the couch for hours afterwards. And the constant jitteriness was just awful.

Hi, When I was not on meds, I felt awful ALL the time - not on and off. I felt like I was jumping out of my skin, and jittery 24/7. The dizziness was here and there, but just overall awful all day long and all night long. Had to take a valium type med to sleep. When I read your posts, it seems like many of you had POTS "episodes", which makes it sound like it was something that came and went. Is that everyone's experience? Thanks, Abby

Very interesting, Issie! I hat a CT scan of my digestive tract when I had all my IBS symptoms and the lab that read it wrote "fatty liver" on the diagnosis. My gastro did not think it was fatty enough to note, and guessed over the phone that I was too thin. It was also read by a dr at the cleveland clinic who also did not mention the fatty liver, so I wasn't sure how to vote on this one. My gastro told me that it is commonly seen in people who are too thin.

Before I had POTS, I would feel "yucky" all day after getting an epinephrine shot. LIke my heart was pounding and weak all over. I thought it was a nervous reaction to being at the dentist. I once "embarrasedly" asked the dentist about it and he told me that I was sensitive to epinephrine. Now they have it on my chart, and they stopped using it, and I am fine after the dentist.

I am under control with meds, but I am still wondering how this happened. I have always been a person who needs to understand. Byt he grace of G-d, someone mentioned OI to me which set me on my discovery of POTS, thanks to this site. I have educated my doctor about all I have learned about POTS here. I think she still suspects its psychological. The one POTS "specialist" I went to told me that I don;t have POTS based on a poor man's tilt while on meds. So I don't have any medical professionals supporting me in my search for answers. I am hopeful that either the meds + time will heal me, but am trying to accept that this may be it for life. I am hoping that this site will clue me in when there are any breakthroughs in research, but I don't honestly believe it will happen any time soon. Sometimes it is depressing and I worry that the underlying cause of this will erupt one day in another way that I won't know how to deal with. Before I started the meds, I felt so ill all of the time, there was no relief! I worry what could come next. But I try not to think about it and just be grateful for each day that I can function. Sorry for the ramble....it feels good to vent somewhere other than to my husband! Abby

I agree, Rama. I am hoping that the SSRI will "reset" my autonomic system, and my body will get used to it that way and take over on its own. I know that with my IBS, my gastro maintained that my digestive tract had gotten used to spasming and was continuing that pattern. He felt that we had to get my body used to working at a regular pace and that it would contiue that pattern once it re-learned it. It seems like he was right! I took an anti-spasmotic (that they don't sell in the US) for 6 months and then slowly weaned myself off. In terms of that, I am med-free now. I am hoping the same idea will work for my POTS.