abbyw

The reason I just switched from Effexor was the night sweats. 5 times a night, shivering and wet. I was also bloated. Switched from Lexapro due to 25 additional pounds in 10 months. I was underweight and now people were asking me when I was due. Now I am trying Prozac. Started with 5mg, after a week or two, went up to 10. Still trying to get used to that. Jittery and dizzy a lot, and really cold. But how do I know what is the new med, what is withdrawal from the old one and what is POTS?????/ I am also really sensitive to meds and caffeine. I think that's why this whole thing is so hard.

HI jknh9, I am very interested in the fact that you started Wellbutrin. I was interested in trying wellbutrin, but without the ssri. Do you know of anyone who was successful on that? Have you found that wellbutrin has helped? My doc's concern was that it would make me even more jittery, as it ks known to be activating. Thanks, Abby

Hi, I've posted on this lots of times before, but I'll add my 2 cents for anyone who's looking at this thread. I've had success with SSRIs and SNRIs and my POTs symptoms. Not 100%, but functional as opposed to non-functional. For all of them so far, I have found that I have to take a really small dose. However, going on and coming off is another story. It is really awful. I have switched due to side effects, and I have done it carefully. I always wean slowly, and I try every trick on the internet for a smooth wean. It is still horrible. Yesterday was my 3rd day completely off of Effexor. (Ihad been down to 1/4 of a pill of 37.5 mg). I had tachycardia all day long, my whole body was aching, I kept drifting in and out of sleep, and I was soooo cold in my bones. It was like my POTS at its very worst. Today, I am much better, but it was really not pretty. I am willing to do it because I know that the other 2 I tried really helped me, so I am hoping that this new one will help too. I hope my experience helps - Good luck, Abby

I am taking an SSRI which helps a lot. I am in the midst of playing with my meds, and a benzo is what helps right now. I take half a pill when going to sleep if I feel jittery.

Some people have a hyper component to their pots, but are not really hyper-pots. For example, I don't see BP changes, but my main symptom is that adrenaline rush jitteriness.

Thanks, Kelly for the excellent information. It sounds like this was a really important experience for you to help figure out what helps and what doesn't. The blood volume issue is especially telling, I know that increasing my fluid intake doesn't seem to help me at all. It was also interesting to see that they are drugs that help with the tachy, but don't actually make you feel any better. That fits in with how we feel symptomatic even when our BP and HR are fine. Any insight on what caused the POTS in your case? Thanks, Abby

Issie- I've been wondering how you're doing with the gastrocrom(?) and the new diet. Any improvement? Abby

I think you are describing blood pooling. This is definitely a symptom of POTS for some people. The TTT is one of the daignostic tools. Have you looked at the main DINET page for more info? Lots of luck! Abby

I was certainly NOT infertile before POTS. I also just got pregnant rather quickly with POTS, so I'm not sure they're related. Also have read plenty of posts and studies on pregnancy/birth with POTS. Now you've made me nervous. I hope all goes well.

Well. some of it sounds like POTs and some doesn't. Convulsions/seizures should be looked into and, as far as I know, are not related to POTS.

Hi Jacquie, Now starting on my 3rd try for ssri/snri, I can tell you that it is awful in the beginning. Fatigue, tachy, dizzy, nauseous, out of it....Try to get through it. I have found that they have really helped my pots. A benzo has helped me get through those days. I don't know Zoloft doses, but I would start with a 1/4 of a "regular" dose, and only go up from there after a full 4 weeks, if you are not feeling any better. Crazymeds is a good resource. Good luck! Abby

Unfortunately, I don't remember where I saw it, but there was this great quote from a guy who was explaining the difference between POTs and anxiety. With anxiety and panic, you think about death or something scary and THEN you start to feel awful. With POTS, you feel like you're going to die, and THEN you get scared. For me, that was the best explanation!

I have no idea if this is realistic at all, but do you think there is anyone you can contact to try to minimize the standing on line part due to health issues? Even for someone who is not of political import?

I have been doing some research on epidurals for POTS patients. It seems that it is not much of a problem. Some doctors prefer to give the epidural slowly instead of in one large dose, other than that, I have not seen much. I know that it is a common thing for normal patients to have a BP drop when getting an epidural, and it has happened to me in my pre-POTs days as well. Definitely discuss with your doctor, but it does not seem like POTS alone is reason to have a c-section.

I'm not sure if that's what I meant in my post about feeling "jittery". I know that internal shakiness, although I do not feel any sense of doom, or fear or anything. Just really yucky. Pulse is fine, so I also don't know what it is. But I don't like it !

Hi, I don't know if you can call a teratology society to find out about the meds. I am also pregnant, but I was told that my SSRI was no problem at all. They were not sure about florinef , because it is a steroid. I know that there is a Grubb article about patients with POTS and pregnancy, and he says that several continued with meds, although I don't remember which ones. All the babies were fine. It is worth a look. Keep in mind, that there are a lot of meds that are officially category C, which means that not enough research has been done, but in reality, doctors will confirm that they are fine to take. I know that Prozac is one of those. Find a doctor who has enough information to guide you. Good luck and I hope you feel well! BTW, the more recent studies show that pregnancy outcomes for POTSies are statistically the same as everyone else. Abby

I am one of those it worked wonders for. I was on Lexapro (SSRI) for a year and It made me functional again. I switched off due to 25lbs and fatigue, and started taking Effexor (SNRI). Also helped tremendously. But the side effects are tough. (Less fatigue, but MAJOR night sweats!) Now trying a third. For me, they are the difference between functional and not functional. BUT....weaning up is several weeks of tachycardia, dizziness, nausea, the works. If I can push through, it ends up being worth it. I had to use Xanax to get me through those first few weeks. I know there are others who have found this to be their answer. Good luck.

Do you ever wonder if they are right? Please don't get me wrong. It has happened to me over and over again, and there is nothing more insulting or that makes me more angry. But other people don't measure their pulse standing and sitting, etc. I know my life can get pretty stressful, what if I am just not a good coper and I just think too much about how I feel?

Chaos - yes, over-caffeinated is a good way to describe it, even thought I stay away from caffeine like the plague. My doctor also said something about my being the hyperadrenergic type, although I am skeptical, as I do not have pooling or tingling or sweating of the extremities. I see you take Bupropion. I wanted to try that one, to get away from the side effects of the SSRI/SNRIs, but my doc was concerned that this would only make these jumpy feelings worse, since that is listed as side effects. Has that been your experience?

I am on an SNRI, which has helped everything except for this. I used to be on an SSRI, and it was gone, but I gained 25 lbs in a year, had night sweats, and I was a zombie all the time. I just thought that this "wired" thing had to do with heart rate, but it doesn't seem to be correlated, so I am confused.Maybe, like Jennifer says, it is adrenaline, but then wouldn't it make my heart beat fast too? Bren, I see what meds you are taking, Jen - what do you take other than the klonopin? I am getting a bit tired of trialing drugs, waiting for my body to get used to it and then moving on to something else....

Hi everyone, One of my main symptoms is this feeling of "jitteriness". I am not really sure how to explain it. I feel wired, or riled up, almost like I want to jump out of my skin. It is sort of like how I felt as a kid before a big test or with stage fright. I feel that way even when I am exhausted. I used to think it was my tachycardia, but I still have it, even when the tachy is under control, and my pulse is in the 70's. It is not anxiety - it is completely unrelated to any thoughts, it's just always there. Can anyone explain to me if this is part of the POTs? What is the medical explanation for this? Or worse - is it not POTS and I am the only one who gets this? Thanks. Abby

HI, I guess I will never know if my previous labor issued were do do POTS stuff in my system before I knew it, but as I said in my original post, my BP went really low and they were not happy with the baby's heart rate. They kept losing it. There were lots of nurses coming in and out and rearranging the monitor. I kept asking if there was a problem and it was "no, no, everything is fine." Then ,they called the head nurse who called the doctor and lots of people were running around. They kept telling me everything was perfect. Then, the midwife said "You have an epidural, right?, let's get this baby out " and - sorry for the graphics - but manually stretched me from 6 to 10 and said "now push". She was born 2 minutes later, a little purplish bluish, but otherwise perfect. There is no way of knowing now, of course, but I wonder if some of that was related to my very low BP. I would like to avoid that kind of excitement this time around. Exciting enough to hear boy or girl. Thanks again, Abby

Thanks for the congrats, we really are very excited, and funny enough, you guys on Dinet are the first to know! Thank you so much for both of your experiences. I live in Israel, where medicine is socialized. I do have the option of hiring a doctor privately should I want to. I have done this in the past for other pregnancy complications. I have heard that people have hired anesthesiologists privately as well. It is really expensive (like $1,500 - 2,000), but I may do it for my peace of mind. That way, I can meet with them in advance, bring them some of the research, and feel better than walking in during labor and handing whoever is on call a bunch of papers and say "read quickly and decide what to do". I have read old posts from Dani, who also mentioned that they titrated the dose up slowly, and that seemed to work. I got a little crazed reading some people's horror stories and some studies which recommend c-sections to avoid any pain or pushing for a Potsie, and that some others docs said no epidurals - so au natural! So much conflicting and contradictory information. I have done half of my kids with epidurals, and half without, and I would like to know that I have my options open, if need be,

I see I am not a "newbie" to you guys, so I will try to make you feel better I am a 38 yo F. Also sudden onset last year. Try to get to a doctor who is knowledgeable about POTS. I personally, don't have one, but the information on this forum gave me enough knowledge to go to my doctor and try different things. I personally did not find that increased fluids and salt did anything for me and I couldn't do any exercise once this hit me, but now I am taking an SNRI, and I am 95% back to myself. I am saddened that this happened and I still struggle with the knowledge that I have to deal with this, but I am a functioning mother, wife, and employee again. So take heart, there is a really good chance that with proper treatment, you will get your life back!

Hi, I have just found out that I am expecting a baby. I have quite a long while to go, but one of the first things I thought of was the use of epidural anesthesia. I know that for my last baby, pre-POTS, my BP dropped pretty low immediately after getting the epidural. I would like to come with some sort of instructions in hand for the anesthesiologist, just in case. Thanks, Abby