abbyw

(Sorry too, for the TMI) I also had d-prominent IBS prior to my POTS. Awful. Lost about 20 lbs. Knew every rest stop in the city. What worked for me was an antispasmodic. The gastro who helped me (after several told me that I was healthy even thought I was having d 6-8 times daily, with pre-syncope each time) felt that my system needed to slow down. I was on something called Colotal. They don't sell it in the US, but it saved my life. I believe there are alternatives in the US. FWIW, I have heard that pomegranates are helpful. I found hot baths to calm down the muscle spasms. And I only ate toast and tea, which didn't help much, but it was better than anything else. Good Luck!

I can also relate, especially since I've never been tested for anything! My doctor probably thinks I am a hypochondriac and does not know anything about POTS. I am often worried that either I have a tumor or some heart defect and one day I will be so ill that they will figure it all out too late. On the other hand, my father passed away from a massive heart attack a few years back. His doctors knew his family history, he was being treated by the rule book. He had just had a stress test several weeks before, which came back perfect. He walked around with it in his pocket - he was so proud of it! He died on the tennis court - getting his exercise. His doctor came to visit us twice after he died, saying that he went over the files and they were doing everything they were supposed to do. As morbid as that is, it shows me that God runs the show around here, and we will go when we were meant to. There is only so much the doctors can do. Yes, we would feel better knowing we had tested for everything, and we should do whatever modern medicine has to offer, but there are no guarantees out there. Believe it or not, that sort of makes me feel better. I try to remind myself to take it one day at a time, and not think too much. Just do the best I can each day. That's in my rational moments. In my not so rational moments, well that's another story completely..... And now that I've read southbel's post, I can be nervous that I am the next one in line for a massive heart attack...(But my father had no dystautonomia)

WoW!

I think that's a great idea. I know that sometimes I read some of the studies, but then I can't find them later on, depending on what words the poster used in the post....

Thanks so much! This is fantastic. Much appreciated.

It was a question about the body's ability to heal from something invasive in general. Thanks!

Welcome to you both. I was experiencing symptoms for some time, and with the help of this site, I was able to direct my doctor in how to help me! I am forever grateful. I hope that you will find your way to recovery here as well,

I could cry from relief. Thanks so much, the two of you, for replying. I think that I am living in a world of "what's going to hit me next?".Now, I can hope that this is just part of the same thing...(I took some Motrin this morning which really helped, but I certainly don't want to start doing that on a regular basiis...) Thank you, thank you , thank you.

Hi, Is muscle pain a common symptom in POTS? I have had neck pain since this started a year ago, but now my shoulders/neck/upper back have been aching for weeks. I have tried doing all of the exercises and stretches recommended by a physical therapist, to no avail. I was up all night, aching. I am starting to panic that I am developing fibromyalgia or something else. I see on the Dinet site, that some patients report this kind of pain, but it isn't in the symptoms listed by the doctors. Anyone else have this and it is an indication of something else going on? At this point, I am too embarrassed to go to my doctor with another symptom. She will really think I am a kook, and I am starting to think I am one too. Thanks, Abby

I would love to have laser eye surgery. I am concerned, that since I don't know the underlying reason for my POTS, it may be autoimmune and this could be risky. Does anyone here know of someone that has had laser eye surgery with POTS? Thanks! Abby

From when I was young, my nose was always the "reddest" when we were outside in the cold. Yesterday, I was out for over 4 hours in the freezing cold. (off topic, but the good news is that I am doing well enough to have a day like that, unfortunately, I have been exhausted since ....) When I came home, my nose was still red 3 hours later!! It is still a bit red this morning! Could this have something to do with vasoconstriction or something? Thanks! Abby

Hey k&ajsmom - I was worrying about you and how you're doing. Keep us posted! Abby P.S. I have also read that Benadryl helps with withdrawal symptoms. Did the doc specify why he thinks its serotonin syndrome and not withdrawal?

Agreed, it feels humiliating to be the "annoying patient", but if there's anything that the doctor can do to make this better, it is a shame for you to be suffering.

First of all, I am so sorry that you are dealing with this k&ajsmom, it is absolutely awful, and I really hope it gets better really soon. Second, this is a really important post for me, (sorry for being self-centered), because I just tried weaning off of Effexor (sort of testing to see if maybe my POTS went away ? and to see what felt worse, the side effects of the med or POTS itself). I was weaning really slowly from 75mg, and I was cutting my pills smaller and smaller once every few days. I was experiencing some withdrawal symptoms, mostly headaches, but bearable. As soon as I got used to one dose, I would lower again. The day that I dropped to 37.5 ( 1 pill, as opposed to a pill and a third) - WHAM! major tachy. I felt like a weak, jittery, shaky, leaf. I couldn't stay standing. I was curled up in bed all day, moaning. I automatically assumed that the tachy was an indication that this was not withdrawal symptoms, but POTS, and that I could not go off the med. After one day, I was back up on the med. Could it be that tachy is a withdrawal symptom and not POTS? I really hope that you find some relief soon! I know that I have read Benadryl helps with withdrawal from Effexor- maybe contact your dr. and see if there is something you can take to help..... Thanks, Abby

i have had tremendous benefits. It helped my dizziness, body temperature control, exercise intolerance, jitteriness. I am 90-95% better on it, except for the side effects. At this point I would still rather being fat and night sweats than totally not functional. Of course, it would be even better without the side effects

Hi Jen, Welcome! I'm so sorry that you have had such a nightmare of a time. I'm glad you found this forum. It has been my lifeline for the last year or so. I am actually doing much better than when I started, but I come here often just to feel that someone in the world understands what I am going through. I had a sudden onset (as far as I could tell) in November of 2011. (I was actually on a 2 day vacation with my husband while my office changed locations, so I know the exact date.) I was one of those people who never could exercise too much, and I was always sensitive to wine, caffeine, and novacaine at the dentist, but otherwise, I was a pretty normal person. I had developed really bad IBS around a year prior, and I was not doing well. I could hardly eat anything, and I started having near fainting episodes whenever my stomach was about to attack. At the same time as the IBS started to improve, this started. (I still think that the extreme IBS did something to start this, but noone has ever heard of that.) Then, one fine day, I got these repeated bouts of dizziness. I didn't think much of it, then when we went out for a walk, (we usually did 25 minutes or so), I HAD to go back after 10 minutes, and it took me over an hour of lying down to recover. I felt like I was going to pass out. From that day, I had repeated episodes of near-fainting, one fainting episode, and repeated dizziness. I was freezing all the time, no matter how much I bundled up. I felt like I was jittery on the inside, almost wired. I went to my doctor who told me that I had anxiety. "I haven't been stressed about anything" - I say. Well, they didn't know what else it was, so it must be psychological. I went to another doctor. Low blood pressure and anxiety. I said "I had anxiety years ago - this is not that" - but they said anxiety. A friend tells me about orthostatic hypotension. I test my BP lying down and then standing. I noticed that my BP doesn't change much, but my pulse shoots up drastically. I googled it and found a link in wikipedia to POTs. It described me PRECISELY. I went back to my doctor, and showed her the link. She couldn't believe it. She had never heard of POTS, but she agreed that it sounded right. She checked my pulse again in her office, with the same results. Based on info I found on this site, I started taking an SSRI. It took 6 very long weeks of increased jitteriness, increased temperature fluctuations, and feeling like death, but then I turned the corner. I did some research, trying to find a specialist. I live overseas, and there is only one dysautonomia specialist listed on this site, or anywhere that I could find in my part of the world. Well, that was a major disappointment. I drove over an hour,and paid a fortune. When he heard that I have 7 kids and work - he said "that must be extremely stressful". Then, when he heard that I found out about POTS online he said "Oh. on Dr. Google?!? " He then did a poor man's TTT, while I was on meds, and told me that he didn't see such a huge jump in my pulse. He suggested that I not think about how I feel so much. Well, I did not go back to him. Meanwhile, I feel about 95% better on the SNRI I am taking now. I am functioning, working, and being a mom/wife again. I am still not happy that this happened, and I wish that I could understand how it happened and if there was an underlying cause that I should be treating. I certainly hope that one day it will go away. But in the meantime, I am very grateful for everything I have gained from this site. This site has helped me to do my research, so that I can go to my doctor with as much information as possible. (She is willing to learn.) This site has helped me feel that I am not alone, and that someone else has been there. The people here are very knowledgeable and encouraging. I hope that you will find all of the answers you need to get the right treatment to help you feel well again. In terms of the insomnia, the only thing I can tell you is that I suffered from insomnia while on Lexapro and it was horrible. The benzos did help me, though. I did find, that otherwise, as soon as my symptoms calmed down, my sleep got better too. I hope you sleep well sooner than you think! Sorry for the rant, I just needed the therapy right now.... Abby

Hi, I have never taken florinef, only an ssri. The first 6 weeks or so were awful, and then I had daily improvement until I was practically normal for me. I did have insomnia, very vivid dreams where I was always in some sort of action movie type situation, night sweats, a heavy headed feeling and I gained 22 pounds in 10 months. For the first 5-10 lbs, I was happy with the weight gain, then , not so much. I recently switched to the overseas equivalent of Effexor, an SNRI, for better stats with weight gain. Did the whole wean down, wean up, weeks of yuck, in order to still be gaining weight. Life is fun sometimes. But the insomnia is better as is the heavy-headed feeling. Night sweats are better too (on the regular version, but not the XR version). Now, I am actually on a diet for the first time in my life. I hope that you continue to improve with this combination and that the side effects reduce over time! Lots of luck! Abby

Can I ask why both of you stopped the treatments that made you feel so much better?

Hi, Thank you all for your replies. Very helpful. My doctor checked and there is no contraindication to taking them both together. The point was that I wanted to avoid the side effects of the SNRI. Thanks, Abby

Hi, Although my POTs symptoms are vastly improved with an SNRI, the side effects are difficult. My doctor wants me to try switching to florinef, as that is the first line of treatment, based on Dr. Grubb's articles. I am hesitant, because that will mean weaning off the SNRI, dealing with withdrawal and POTs symptoms, and then trying the florinef. If it has a good chance to help me with less side effects than I have now, it would be worth it, but I wanted to get a feel for what my chances are. Thanks for your input and information, Abby

I took a benzo when I was starting meds for the first few weeks until the meds built up in my system. It helped calm things down enough that I could sleep. I was also concerned about dependence/addiction, but my doctor said that she has patients taking the same dose successfully for years before bedtime. She was of the philosophy to get me to a stable place first, and then we'll deal with an issue if it happens. Anyway, I was still scared of it, so I would take a half a pill and only if I really needed it. I would say I took it 10 times or so, and then I didn't need it anymore. I did take it with me when I took a 12 hour flight, just in case. It comforts me knowing that I have the option available if things get bad.

When I had very bad IBS right when this whole thing started, I would have presyncope whenever i was going to have a bout of diarrhea. I went to doctors and told them that if I felt like I was going to pass out, that was my indication that I was about to have a stomach attack. No gastro believed me. I was once in a doctors office waiting room, and I knew it was coming. I spent 45 minutes in the bathroom of the office, sweating profusely and splashing cold water on the back of my neck while sitting on the toilet so that I would not lose consciousness. As it got worse, I was peeling off my clothes because I was so sweaty. I was doing deep breathing and continuing to keep myself awake with the cold water. Meanwhile, every once in a while, there would be a polite knock at the door, and I would sweetly answer - "just a minute". I kept picturing what would happen if I passed out and they called an ambulance to break into the bathroom and found a partly naked woman lying on the floor in the midst of pooping. Pretty traumatic. When I came out, I sat in the waiting room for a half an hour, waiting to calm down enough to drive myself home. I tried not to notice the strange looks considering I had already been in to see the doctor. Not fun at all. But I am still here to tell the tale...and doing much better now. It is a not so distant bad memory. I hope that we all get past this and it will be just a memory for all of us.

I don't live in the States, but my mother just did her first steroid injection. She said that it did not solve it, but she has been able to sleep for the first time in months. and without meds. She was living on Advil, Motrin and more. If there is a way to check where the meds come from, I would consider it.

Interesting. I wonder how it would compare to beta blockers.

If I understand correctly (which of course, I may not...) the issue is not the increase, but the sustained increase. I know that my dr. insisted on only checking my standing hr once I had been standing for 4 minutes. It's not the inital jump, but that it stays that way for a while. I will try to see where I read this and will edit my post if I find it.