abbyw

I can relate to how you feel. I keep thinking that this was some sort of weird phase my body went through as a result of my horrible IBS, and that things will just go back to normal one day. I was hoping I would be one of those cases where the patient recovered. I was wondering how I would know that it is over if I am always taking the med. But I tried weaning off, and the symptoms were back. It is very sad for me to think that I will always be on meds. But right now, I am grateful that meds help me. Reading so many people's stories here make me realize how lucky I am to have figured out what it was so quickly (around 1.5 months of symptoms) and how lucky I am that I tried an SSRI first and that it is working for me. I am grateful to be feeling well and functioning at an almost normal level. I would take feeling well on meds over feeling awful off meds any day.

I imagine you mean Xanax (anti-anxiety)? Not Zantac (for heartburn, etc.)

I tried weaning off and my symptoms cam back after 2 weeks on 2.5mg less. One taste of those jitters and I was back on. I was also too thin before I started the SSRI. I weighed around 105lbs. Now, I am up to 125. At first I didn't mind - I looked gaunt, but now - it looks like I will just keep getting bigger and bigger and bigger..... My husband says if I found something that works, I shouldn't try something else, but I don't want to keep gaining weight indefinitely. I have never tried anything else, this was the first drug that I tried. I am worried that if I experiment and then go back on, it won't be as effective the second time around....

I tried magnesium once or twice and I remember feeling wired on it. Wierd, but true. I tried melatonin and it did nothing. I didn't see that exercise helped either. Thanks for the suggestions, though! Does the celexa help your POTS and are you gaining weight on it?

Hi all, As I have posted many times, I am taking an SSRI and it has helped my POTS symptoms dramatically. I am left dealing with weight gain from the SSRI and extreme fatigue. I am not sure if the fatigue is a hangover from the POTS, or a result of the poor sleep I get on the SSRI. I take my SSRI in the morning to try to avoid the sleep issues, but it doesn't seem to help. Have any of you experienced this and what do you do to help? Thanks, Abby

Hi Shannon, I take an SSRI - the equivalent of Lexapro. It took a long time to get used to and it was pretty rough, but once I hit the 6 week mark, it helped all of my symptoms - POTS and anxiety. I am also wondering about taking it while breastfeeding, (I am considering having another child, but I am nervous about going ahead while I have POTS.) My docs said it was considered OK while pregnant, but I didn't find out about breastfeeding yet. Good Luck! Abby

That was great, Naomi. Thanks!

I was just diagnosed with POTS around a year and a half after I had a baby, but I definitely had POTS-like tendencies earlier on in life.(Nothing major, though). But I definitely experienced a BP drop and dizziness when I had an epidural. (I would definitely prefer to have some dizziness than transition contractions though! )

Hi, Can anyone point me to studies on POTS and pregnancy? I would like to have another baby, but this would be the first time since I have had POTs. I looked through old posts, and the only study I have seen so far is from DR. Blisthstyn, where she says that 50% have severe vomiting in the first trimester. (No interest, thank you.). I did not see this backed up by the posts here. My POTS is basically controlled now by SSRIs. I am interested in knowing if getting pregnant while your POTS is controlled by meds would lead to a greater chance of a relapse. Thanks, Abby

Wishing you a safe and healthy return to your in-tact home!

Hi, I live outside the US. The only POTS specialist where I live did a poor man's tilt while I was on my SSRI and told me it was all in my head. My doctor is very cooperative and is willing to learn about POTS . She wants to know if Dr. Grubb or anyone else would respond to e-mails. Do any of you know of someone who would be willing to cooperate? Thanks for the help, Abby

Hi, I've seen several posts here about people who got really bad flares while flying. I was wondering if your POTS was pretty stable at the time that you flew. My POTS is pretty under control with the SSRI I am taking, and I never would have thought of not taking this trip, but once I saw your posts about your awful episodes, I started thinking that maybe this is not such a good idea. It is an 11 hour flight and I won't have my husband with me. Does anyone with their POTS under control with an SSRI have experience flying? How did it go? Thanks, Abby

I don't know Rama, I have been on an SSRI since December. I have gained approximately a kilogram (2.2 lbs) a month! I notice that I am starving almost all the time. I have been exercising regularly since a few weeks in. Like I have said, it helps my POTS, but I don't want to become obese either! When I realized what was happening, I started really watching what I eat, so I tried eating healthy things all day instead of junk, and with the exercise, I seem to have plateaued, but it is a constant struggle. I tried lowering the dose to help with the weight gain (I also get the sweats at night), and immediately, my appettite decreased, but then my symptoms started coming back, so now I am weaning back up. Looking for an alternative, I am thinking about trying Wellbutrin, but the list of side effects does not look pleasant there either, and what if it doesn't work. Like you said, I am happy to have something that works!

Hi, Thanks everyone for your input. I never suffered from migraines (and I hope I never do!) I took an SSRI at one point 11 years ago for Postpartum depression for several months, but that was it. Not sure if it is related, but in the several months prior to the sudden onset, my IBS was so bad that I was having some sort of vagal response when I would get a bad bout of diarrhea. I did not actually faint, but I came pretty close pretty often. It was almost as if while my IBS got under control, my body needed a different way to let those vagal responses out - and POTS came along. I did ask my doctor to check for autoimmune issues, and she checked my ANA, and it came out good. Thanks again, Abby

Anoj - From your response to my earlier post, I know that you are taking an SSRI. TMJ is a major side effect of Lexapro. There is a site crazymeds.com, and they list it as one of the most common side effects not listed in the package. I don't know if that's the med you're taking, but it may make more sense than looking for another disorder . Abby

Not that I know of, although my glands were swollen. But I think my question is more - Do I have POTS? And if so, if I have no pooling, then what does all this blood flow information have to do with me? Why is an SSRI working and would something else work just as well? Thanks for trying to help!

I would say pretty much sudden onset. I can say that I was never the best exerciser, I was always sensitive to epinephrine (novacaine) at the dentist, and I have had stomach issues for the last few years, but other than that I was a pretty normal person . Then, one day in November, I started getting dizzy spells and exercise intolerance. By December, I was a wreck. Oh, BTW, I definitely see that I have memory issues as well. I am 38, and I feel like my mom - I can't remember people's names, and I forget appointments, and what I was about to say, etc. Thanks!

Hi, With so many different presentations of POTS discussed here, and considering the fact that my Dr. knows nothing about POTS, I am trying to understand what "kind" of POTS I have, if at all. Before meds, my symptoms were: *frequent dizzy spells (10 times a day or more), sitting or standing *increase in pulse of over 30 after standing for 4 minutes *exercise intolerance *jittery/"jumping out my skin"/wired feeling *cold in my bones *chest tightness/pain when breathing deeply *presyncope/syncope a few times - after exercising, and once when I got up in the middle of the night I do not have: *pooling anywhere in my body *any MCAS/MCAD/EDS issues that I know of *shortness of breath I now take an SSRI, which basically got rid of all of it. I tried reducing my dose by 2.5mg, and it all came back within 2 weeks, without the dizziness or presyncope.I learned my lesson and am increasing again.I was trying to decrease my dose because of the side effects. I would consider trying to switch to something else, but I am trying to understand what exactly I am trying to treat. If I don't have pooling, then is this still POTS? If the SSRI is working, does that mean that this is not a vasoconstricting issue? I am confused about the serontonin aspect versus the vasoconstricting/pooling aspect of this syndrome. Thanks as always for your help and insight! Abby

I am very curious what Rama and the other "researchers" think about this. Why would this be so helpful? Thanks, Abby

I also went on because I had read that SSRI"s help many with POTS. Of course, this just supported my Dr's theory that I had anxiety, but I didn't care as long as I felt better. I started on 10, but that was too much too fast, Those weeks of my life are also a total blur. I had to wean up slowly, So I went down to 5, and after a few weeks, went up to 7.5, where I stayed because I felt good. It took I would say a full 6-8 weeks until I felt better, but it really gave me my life back. I went from dizzy spells 10 times a day or so, to none, and I just felt stabilized. Hope that helps, Abby

Has anyone found that taking an antihistamine has affected their symptoms? I am not sure if it is a coincidence, but I feel better the last few weeks and I have been taking one for my allergies. Thanks for the input!

I was taking 7.5mg of Lexapro, now have been weaning down to 5mg to try to reduce side effects- weight gain and night sweats. IT has helped almost all of my symptoms. I too, was barely getting up from the couch all day. Now, my dizziness is gone unless I am really exhausted, my jitteriness and cold inside my bones feelings are gone too. I am back to work, and functionming well. I get tired easily, and sometimes have a symptom here or there, but that's about it.

Thanks everyone. Issie, I guess that's my question. I am a "learner" by nature, and I am grappling with - "do I just have POTS or is there something else here?" I don't seem to have the symptoms that others (MCAS, etc.) have, so where in the world did this come from? Is there any reason to dig and try to find out more? Is POTS the question or the answer?

Hi, I've been reading a lot of posts from people who have all sorts of other issues. It silly, but its making me nervous that I have some other underlying issue that I don't know about yet, just waiting to creep up on me.. here comes the hypochondriac. Thank G-d, I seem to have POTS without any other conditions, other than IBS for the last few years which has gotten better as soon as my POTS started (although if you think about each part of your body hard enough, you could always come up with something.) Are there any others out there like me or should I be digging deeper to find some root cause - like something auto-immune? Thanks, Abby

After 6 weeks of getting used to it, it got rid of almost all my symptoms. (now I just have some side effects that I don't enjoy, but the POTS is very under control.)