abbyw

Hi, The reason my doctor prescribed the SSRI/SNRI was because she knows nothing about POTS. I came in with my own diagnosis and treatment plan and she went along. I chose to try that because in the literature I had read, Dr. Grubb had said that he had seen lots of success with it. I was scared to self-prescribe florinef and the side effect list didn't seem any more pleasant than the SSRI. Considering that the doctors I had seen had never heard of POTS and were saying I had anxiety, this was something they were willing to go along with. Totally not scientific. I know. I was desperate. As many have said before, starting was completely horrific. There is a great site, crazymeds.org, and I ended up following his recommendations of starting on a low dose and going up. Even with that, the tachy got worse, as did the dizziness, and the chills and shaking. I lived through the first two weeks on benzos. But then things started to calm down and I was taking a 1/2 a benzo every other night just to get to sleep. Then, more improvement. I would say 4 weeks until I was out of the horror show and another 2 until I was stable. I did gain a ton of weight on the Lexapro, and the Effexor(SNRI) left me pretty jittery a lot of the time with horrible night sweats, without losing the weight. For me, so far, Prozac has been the best. Again, I am not what I was pre-POTs, but I can do the grocery shopping without a pre-syncope or syncope episode. I can do housework with breaks in between. I can take my kids to the park. To me, that is worth a lot. It still bothers me that I did not ever get an official diagnosis, and that I am not 100% back to myself. But overall, I am grateful that I am not where I was a year ago and that I am functioning. Sorry for the long post - Hope this helps someone, Abby

I am one of the SSRI/SNRI success stories. I am on my third try - attempting to find the right med. Right now I am on Prozac, and I am very happy. Losing the weight from the Lexapro, and better for me than the Effexor. The only side effect for me right now is fatigue. But I can walk, and stand, and work. I am not 100% where I was before POTS, but I am 90% there. Without it, I am completely not functioning. I am not saying that SSRIs are not over-perscribed, and that they are not hard to wean on and off, it was horrible, but for me, it has helped me get (most of) my life back. Hope you find success too....

Hi, I am now on 20mg of Prozac. I think that most of the weaning up process is done. It has been around 5 weeks, I think. It is hard to know about the weight, since I am pregnant now, but I did lose 2 lbs,and then gained one back, but I am 12 weeks now, so I am considering that weight loss, if that makes any sense to anyone else. I am having some night sweats, but significantly less than on the effexor. In general, I would say that this is the best one I have tried so far. I am exhausted, but as I said, being in my first trimester makes it hard to figure out what is what. I still have a hard time after walking for more than a few minutes, I get very tired and overheated. And I am also having a hard time regulating my body temperature. I am often very cold, except for right after walking, then I overheat. But I don't feel that inner jitteriness most of the time, and I am functioning OK. I know, not such a clear report, but that's the best I can tell you for right now. Hoping you all find relief - Abby

Hi, One of my symptoms is that I am usually freezing cold. However, if I do any type of activity, I get overheated. (For example, today I did a load of laundry and a sink of dishes, and I was sweating.) I am taking an SSRI which is helping me, but this is still hanging around. Sometimes I think that I should train myself to gradually increase my activity, and maybe I will improve, but I don't know if that is true. Any input on what would help this? Thanks, Abby

so happy for you! hope you get even better with time!

I also flew internationally with POTS - a 12 hour flight. I was nervous, so I packed a benzo just in case. I was fine, but very tired afterwards. Slept really well the whole time I was away.

For me, SSRI/SNRIs have been the answer, but I definitely needed the benzo to get me through the weaning up process. I don't take benzos regularly. I take Ativan, and I would only take it if I felt like I totally could not handle it anymore. I would take a half to get to sleep, and take another half if that wasn't enough. Maybe the fact that I wasn't taking them regularly is what made it OK. I only needed them for like two weeks, once a day. For me, it is reassuring to have them in my medicine cabinet. To know that if I get so tachy and jittery and awful feeling there is something that will make it go away. (That actually makes me sound like more of an addict - that I psychologically need to have them nearby....) Lemons, I, like you, am much much better on the SSRI. However, I still find it disappointing that I am not 100%. I still have days with that "wired" feeling, I do tire more easily than I used to, and exercising is still difficult. But, I am grateful that I am functioning!

Hi again, Shan1212, I found your post so interesting because I am 10 weeks now, and I was just saying that weeks 6-10 are always the worst! Before week 6, and after week 10, I am always like "It will be hard, but I will get through it, and afterwards it will be worth it.". During those weeks on the other hand, every minute is an eternity, and I spend a lot of time thinking "What were we thinking? I can't do this another minute!"..... LOL - the joys of motherhood! But that was always true for me, for my babies pre-POTS and for my pregnancy now. trublukrav - I am a little nervous about a plan of "Go for it and deal with the consequences later"....... but I do understand your hesitance to deal with the doctors.... Good Luck! Abby

I think, that like others have said, it may be that you do in fact have POTS, but the SSRI is working to help you. I think that is the case for me as well. I know that many people have found that it helps them. Of course, there are some who it does not help, and they have to look further, but we should be grateful that we found something that works for us. Are you feeling better overall?

Hi bebe, When I said I had a hard time starting up, what you described is NOT what I meant! I had horrible tachy, feeling freezing, nauseous, and a totally out of it and sick feeling. I also needed a benzo just to live. But not what you had. I hope you find someone/something that helps soon. alex - not sure if your approach would help resolve the question. If it is anxiety as opposed to POTs, then coming off the meds would bring back the symptoms, but we wouldn't know if they were POTS or anxiety. Thanks, Abby

Thanks again, everyone. You are reminding me that I was not so doubtful of myself when this whole thing started. It was only once every doctor I have been to has thrown anxiety at me that I have started to doubt myself. bebe - I really enjoyed that article about POTS and psychology. I am thinking of bringing it to my family doctor.

Hi cma, If you look at my post of "2 docs saying its anxiety...", I sort of have the same question. When on the SSRI, I am ALMOST normal. Does that mean that it isn't POTS or that the SSRI is keeping the POTS under control? I don't know the answer to that. Thanks, Abby

Thank you all for your encouragement. The SSRIs tend to help me a lot, hence my hesitation to a) do testing on them and b)go off them to do the testing. It would take me months to wean off and then wean back up, all the while feeling horrible, so it is not something I am eager to do. But I don't think we will see the HR jump while on them. I tried asking lots of questions: about how he explains the exercise intolerance or the HR jump. He basically said, "well, we would have to do the actual testing to see that. We don't diagnose by listening to the patient's narrative, we do tests". Which was good, but he insists that the SSRI won't affect the results, which I know it would, at least for me. I live in Israel, and these are the two neurologists in Israel whom I have found who have heard of POTS. I was going to send him an e-mail with links to Grubb's studies listing SSRIs as a treatment, but I am having a hard time imagining him taking that well......and I don't want to antagonize him considering he may be my only option.....

No, he didn't. I know that when I was checking my BP and pulse before I had ever heard of POTS, I was getting jumps of over 30, after 5 minutes of standing. I don't know how much more, but I definitely fit the criteria. Unfortunately, my GP only tested it once before I started the meds, but I was sitting up for 5 minutes or so for the 1st reading and standing for 4 minutes for the 2nd reading, and my pulse only went up 20 points, which I don't think tells us much of anything. I think my question is stemming from the fact that these doctors are supposed to be specialists for dysautonomias, not "regular" doctors. If a regular doc was saying anxiety, I could think that they just don't know about POTS. But these guys are calling it anxiety without testing me for anything. Maybe I am just exuding anxiety. Why would they be dismissing it as anxiety otherwise?

Hi, I am feeling really lost right now. My whole story started last Nov, when one fine day I started getting dizzy episodes. Exercise intolerance, pre-syncope and inability to regulate my body temp. I went from dr. to dr. who all told me that I had anxiety and I should start an anti-depressant. One doc said I had low blood pressure. Didn't feel righ to me, but I accepted it, while continuing to research my symptoms. Someone mentioned orthostatic hypotension, and I looked it up. I stared taking my BP a few minutes after standing, and found that my BP stayed the same, but my pulse was shooting up. Googled it, and found POTS. Fit all of my symptoms to a T. Went back to my dr, who never heard of it, but agreed that it fit. Started an SSRI, basically to cover any basis - Grubb lists it as a treatment, and it would help if it was anxiety. Found an expert in my country who deals with POTS. He heard my story and did a poor man's TTT while I was on the SSRI. He then said that he does not recommend people diagnosing themselves on "Dr. Google" that I should stop thinking about my symptoms so much and forget about it. Fast forward a year and 3 different SSRIs, trying to find one whose side effects don't drive me nuts. I feel like I have a condition, but noone who knows anything about treating it. I tried another doctor, who says that if the SSRI makes me feel better, then it is not dysautonomia, it is anxiety. I feel so frustrated. I explained that I do not have any anxious thoughts, no feelings of dread, etc. He says that free floating anxiety attacks the body without any thoughts necessarily involved. I asked him about the exercise intolerance, and he had nothing to say. First lets get a diagnosis, he says. He wants me to to testing while on the SSRI. I feel there is no point. I feel so lost. If two supposed "experts" in dysautonomias have claimed that all I have is anxiety, maybe they are right? But so many of my symptoms cannot be explained by that! Do I keep looking or do I just give up now and say that I was wrong? I am pregnant and I was really hoping to have a good, knowledgeable doctor on my side who could help me find an good anaesthesiologist to work with for the birth. Should I wait till after the birth and then fly into the US to get into a place like cleveland clinic or mayo and do thorough testing? Or do I just accept the anxiety diagnosis and forget about it? I feel so alone. Thanks, Abby

Does it make a difference if it is sodium ascorbate or calcium ascorbate?

Hi, Here was our e-mail exchange: I wrote him the following: Thank you very much for your time and explanations today. I apologize in advance for taking some more of your time, but there is something that I still don't understand. I know that when I am on the SSRI, I feel significantly better. Without it, when I walk a few buildings away to get my daughter from gan, I feel like I am going to faint, and standing and washing dishes makes me feel so ill, that I take my pulse and find it over 120. If this is from anxiety, and the SSRI is helping it, then when I do the 24 hr. holter while on the SSRI, you will not get the same results as you would have gotten while off of it. Are you saying that if anxiety causing the dysautonomia, and we treat the anxiety, it is as if I don't really have the dysautonomia anymore? If so, then, if I feel (mostly) well while on the SSRI, why bother doing the testing at all? I feel that if I am going to do the tests, they should test what my system does "naturally". (Although I would be very nervous to put myself back in that extremely ill state.) And as you said, we can't give a diagnosis based on anecotdal information, but it would seem that basing it on tests while a person is medicated would not work either. Can you please explain? Thank you again for your patience, He responded: If you have indeed POTS , SSRI would not mask the signs . If you are happy with SSRI regardless of why you are taking it its fine and there is relay no need for further testing at this point.

Hi, Definitely could be just from starting up. Search this site and a site called crazymeds. I know that starting up was horrible for me. My POTS went through the roof, but after 2 weeks, needing a benzo to settle me down, I got used to it and started to see improvement. It is very common. It is important not to do too much at once. Wean up. But you can still expect side effects. Good Luck! Abby

I agree with you lukgar.I tried pushing him about the SSRIs in the office but I didn't get far. I know that Grubb and others believe in it, but there are some that don't. The paper from Vandy, for example, does not list it as a treatment. I got the feeling that pushing more would be an ego thing at that point. I did just send him an e-mail asking him to clarify his stance on testing while on the SSRI. If he claims that I do have dystautomia, but it is caused by GAD, is he saying that if I treat the GAD, it is as if I don't have dysautonomia anymore? Then why bother doing the tests at all? I told him that it made more sense to me to do the tests as by body would naturally respond to get a clearer picture. We'll see what he says. Meanwhile, big talker that am, I have no idea how I would wean myself off of the meds and let myself get so ill again for the purpose of the testing, and then have to wean myself back up, etc. Does not sound like something I want to do.

Hi, I don't know how many of you "know me" by now, but I live overseas and I had never found a doctor who knew about POTS and was "educating" my GP until now. It has been a year and 3 months since this started. I had/have classic POTS symptoms with sudden onset which stared with dizziness, exercise intolerance, presyncope and syncope, HR increases of over 30 on standing, jitteriness and chills. Prior to this, I had IBS, which is pretty much gone now. I have been helped a lot by an SSRI. I finally saw a neurologist today who has a "longtime interest" in dyautonomias. His theory is that I have what he called free floating anxiety, which he says is different than acute anxiety and panic attacks. He says that this will affect various systems, and that it first affected my stomach, and then hit my autonomic system. Not sure what I think about that. He does want to start with a 24 hr Holter and then a TTT. That makes me happy, because I have never been checked for anything. However, he does not want me to be off the SSRI to do the tests. He says, I should wait till I feel stable on the SSRI before I do the tests. He does not believe that the SSRI would regulate the ANS, but that it would reign in the anxiety, which could be causing my symptoms.He just wants to check me out cardiologically. I asked him about any connection to neck pain and he said "that's BS" - which was pretty funny because it wasn't in English.... Anyway, not sure what I think overall. I always get annoyed by the "anxiety" diagnosis, but this was a little different. Idon't like thinking of this as a physical manifestation of a psychological problem. My husband doesn't understand why I should be upset - so what if it is caused by anxety? As long as you find something that helps and you can get your life back, who cares if you have to take an AD for the rest of your life? SO you take on pill a day and you live your life! Any opinions? Thanks, Abby

Interesting, doesn't list ssris as a course of treatment. Grubb does. Any ideas why?

Yes, I saw that thread.I have been feeling jittery on a regular basis, so I have been trying to figure out why.....

Hi, Sorry for the newbie question, but what is your hr when you feel good? I find that some days when I feel bad, even if I am lying down, my hr is in the 90's. I thought that technically, this is an OK pulse, but on days that I am feeling fine, my hr will be more in the 70's when resting. Does that make sense? Mind you, this is not related to whether I am standing or sitting, etc. Thanks, Abby

I am with you 100%. My kids say to me very evening now - "You're not feeling well again?" I try so hard to push through each day. I seem to wake up OK in the morning, and get worse as the day goes on. By around 5pm, I am freezing and jittery and just counting the minutes till I can go to sleep so I won't be feeling yucky anymore. My hubby has been doing meals. I don't think my kids even remember that I used to cook every day. I keep begging G-d to just make this whole nightmare go away. You are a hero for home schooling. You are a hero for going outside with the kids. The fact that we keep trying to be good wives and mommies and do not turn into selfish people, makes us heros. Remember that!

Hi, I don't have that much wisdom to offer. I am pregnant now, by choice. I knew that I have POTS and that I was always a weak person before this, but my husband and I wanted this baby. I have had enough other kids to know that pregnancy, at least for me, is hard, really hard. But, we think of it as a short term hardship for a long term gain. But, we would not go into it without knowing that my husband has to be available to help me a lot more. The first trimester, (and the 2nd , and the 3rd...ha ha ha) especially is hard. You are going through lots of hormonal changes and your body is trying to cope. The thought that it is only 10 more weeks, or whatever, is not really comforting when you feel so ill. You have to really consider if your body can handle that right now. Also, it is a good idea to get in touch with a teratology hotline about the meds you are taking. For example, I checked my Prozac and the benzo I need on occassion with them, as well as any issues with breastfeeding. Sometimes the FDA is more conservative, and the latest studies show that certain meds that are not recommended by the FDA are really OK - with no differences in complications for the baby. But you have to do your research. I wish you the best of luck in your decision, and hope that you feel well no matter what you decide - \ Abby