abbyw

Well, I had them before I had the health issues, and as I always point out, I didn't have them all at once, just one at a time ! - its not like I had 7 babies at once - we have quite an age range! My teenage daughters help a lot. They take a lot more emotional energy than physical energy.

I appreciate all of your support. Thanks. I know that when we are in a good mode, we are doing what your wise friend said, Rachel. We are both being grateful for each other and seeing each other. I am so grateful to him for all of the slack he has picked up since this whole thing started and he is grateful to me for how hard I work to keep pushing. I think we both know that (men, don't kill me here) women push through sickness better than men do. When he is sick, he just checks into bed until its over. Women don't do that. This has been a year of struggling for me. Neither of us are thinking of ending this. He is frustrated about my not expressing my love, and I am frustrated that he is frustrated. I am in survival more. (It seems like on a permanent basis.) And romance just doesn't make it in the top 10 when you are in survival mode. StandSit I also work in computers,(technical writing) and work from home now, but just providing that income takes a lot of effort right now. Taking care of laundry, food, kids (I have 7) is a huge effort. Homework, cleaning. And trying to be nice to everyone around me once in a while too. I really do understand him, but I think he just doesn't really understand how hard it is to be doing all that while I feel jittery and weak. I highly suspect that if it was him, he'd be in bed and not feeling too romantic either. Sorry for the ramble. But again, I appreciate your support and understanding.

Never noticed pooling anywhere before. This was while I was outside, my hands and toes started to itch. It stayed that way for about a half an hour or so after I came inside.

Hi, So winter has just hit where I live and it has happened twice in the last 3 days, that when I go out into the cold, my hands get very itchy. It is an extremely uncomfortable itchy too. In a few places, it almost looks like a red blotch with a white center. Almost like hives, but it is not clear. (It is normal for hands to get red when they are cold, but I have never had the itching before. ) Does this have something to do with the POTS? If so, does it help give me a clue as to the source of the POTs - like is it autoimmune or something, or is it just another symptom? Thanks! Abby

I'd like to know the following. If a person suspects that they have POTs, but they do not have access to a POTs specialist, what would be the suggested plan. What doctors should they see and what should they ask to be tested for? (Cardiologist, neurologist, rheumatologist.)

Sounds amazing! I hope things go uphill from here!

Also got this once or twice when very tired. It went away but it was really annoying when it happened. Hope it passes soon.

Thanks you guys for your support. Sometimes it is just hard. I would also like to be fun loving again.

Hi, I am venting here, hoping someone will be able to relate. I am feeling so depressed. I don't know if it is the POTS, or the meds, but I am just tired of it all. And my husband has complaints. That I don't put enough into our relationship. I don't initiate any romance. I don't know if I should laugh or cry. I feel like I am a hero for not staying in bed all day. I feel that I am amazing for not just giving up. I am trying not to lose my job, so I work every day. I try to make food for the kids. I do laundry. And all I want to do is crawl into a little ball and cry. And he wants me to be initiating romance? He says that he doesn't blame me but he feels hurt that I am not romantic anymore. Any advice? Thanks, Abby

I think the name of the diet you are trying to remember is the Paleo diet. There is a recent thread about it. I believe that it is also referred to as the caveman diet. Basically, you only eat things cavemen ate. I am dairy free. I am lactose intolerant which started all of my IBS. It took 2 full weeks of being dairy free for my stomach to stop hurting. If I have the smallest amount of dairy, even with lactaid pills, it is not pleasant for several days. Once I got that figured out, things got much better. But then, my IBS got worse. I tried gluten free, but it was very hard for me, I am a carb-junkie. Bread, cake. cookies. Its terrible. But when my IBS was bad, I felt that those kind of white flour foods were the only things that would not give me diarrhea. Anyway, I tried gluten-free for 48 hours......and that is exactly when my POTS began. November 17,2011. Its almost my one-year anniversary. How should I celebrate? Anyway, I wish I could do it, but it seems too daunting to me. But I know that gluten free has helped so many people with so many problems. While we mention it, I would also love to go sugar free. If only there was a way to do these things without being hungry and without too much effort........

I also think it is somewhat common to get anxiety when we know someone is sick. If she hasn't already, I think that she should see a doctor to see if there is anything that can be done to help prevent these attacks. I hope your mom (and you!) is back to herself soon.

Hi, Unfortunately, I do not have a doctor who knows anything about POTS. I do have a dr who saw my symptoms and looked up POTS based on my research, and was pretty much in agreement about the probability that I have POTS based on the fact that my pulse was jumping over 30 points after standing and staying there for a while. Therefore, I have never been tested for a Pheo or for anything else. I did have an abdominal CT scan last year, just prior to the start of my POTS symptoms, and that came back OK. Would that mean that I don't have a pheo. How do I check for one? Like southbel said, there would be something nice to have something to blame this on and a way to get rid of it.... Thanks, Abby

I know that when my doc did a poor man's ttt, they only checked my pulse after 4 minutes of standing.

Hi cma, When I started Effexor, I was switching from Lexapro so it is hard to know if I was feeling my POTS symptoms, withdrawal from Lexapro, or side effects from Effexor ! I was feeling wired and jittery and dizzy - just plain yuck! But when I increased the Effexor, I started doing much better. I started at 37.5 twice daily, added another 1/2 a pill to each dose after a week, and I just went up to 75mg. Now I feel almost normal again. At the beginning I had difficulty urinating (sorry if that's TMI) , nothing too bad, and I have had increased sweating. But the urinating issue is almost all gone now. I have read that the other symptoms improve as well. As with everything else, too much internet research can be a bad thing! Sometimes it is better not to know the horrible things others have gone through. I understand your hesitance to take the medicine plunge. I know for me it was very helpful. My theory was that if it was too bad, I could always wean and then be back where I started. My thoughts are with you! Abby

Hi, I was on Lexapro for 10 months and just switched to Effexor, so I am probably in a good position to help. Of course, everyone responds differently. Weaning up to each of them was the hardest part. It definitely increased my anxiety and the feelings of jitteriness for the first few weeks. The first 2 weeks were the worst, and then I gradually started getting used to the Lexapro. By 6 weeks, most of my POTS symptoms were better. I had to take a benzo to calm my system down in those first two weeks, but I got through it. I just switched around a month ago because of the weight gain on Lexapro, I gained 22 pounds in 10 months. I was also worried about the Effexor, but switching to it wasn't as horrible as I thought. I read up a lot on it, and most people are able to wean if necessary. If your POTS is debilitating, I would say that it is worth the few weeks of side effects in order to get your life back. I am around 85-90% better than without meds, and most of the side effects improve over time. Good Luck! Abby

That sounds like good news! Are you feeling well in general?

Hi Southbel, I just wanted to let you know that I think this is something we all go through. It is a sort of mourning process. We (at least I) were healthy one day, and a total mess the next. I hope you get some answers and something that works for you really soon! Abby

Thanks for your help! I will try Dr. Blithsteyn and see where I get.

Hi, My bp stayed pretty much the same, it was my pulse that went nuts. I do not see pooling either. I had flushing after eating once. Syncope once after running to catch a bus in my early POTS days. It is so hard to be the one trying to figure this all out. I wish I had a doctor who knew something....... Thanks, Abby

Thanks, Alex. Obviously, I realize that having a POTS specialist is imperative. Unfortunately, I live overseas, and the only POTS specialist in the country brushed me off as having anxiety after do a poor man's ttt when I had already been on the SSRI for 5 weeks. I can't take that diagnosis seriously. My doctor, who is very nice, admits that she knows nothing about POTS. She thought that my symptoms were anxiety. Someone else mentioned Orthostatic Hypotension to me which led me to info about POTS. I showed her an article about POTS by Dr. Grubb, and tested my pulse sitting and standing, and saw my pulse rate jump. Looking at Grubb's article, she decided to start with an SSRI, because she (as a GP) was still thinking anxiety. The SSRI got rid of almost all of my POTS symptoms. As you said, the first few weeks were awful, but somehow I pulled through (or moaned, groaned, and slept through). Then, after 6 weeks, I was almost back to normal. However, I have gained 22 pounds in 10 months, and suffered from insomnia, night sweats, and fatigue. I don't know how she could contact a POTS specialist in the States, and if they would welcome that type of correspondence. That is why I have been doing my own research. When I first started meds, I was feeling so ill, i thought that I wouldn't care about weight gain. But it hasn't stopped! I do not want to keep getting bigger and bigger and bigger and........ So, now I was trying to look into other options. But I know nothing about florinef other than that it is a steroid. Hence, my post. Thanks again, Abby

Hi, I am a self-diagnosed POTsie, My doctor has basically gone along with whatever research I brought her. We tried an SSRI and were pretty successful, other than the side effects. Is there a reason to try Florinef before trying an SSRI? Did I come on too heavy for a first try? Is one med more effective or less dangerous than another? Thanks, Abby

Thank you all for your responses. Other than the white patch on my face, the only other issues I have had is IBS and POTS. My POTS related symptoms are exercise intolerance with pre-syncope, dizziness, jitteriness and chills. My pulse rate goes up over 30 upon standing. I thought that perhaps diagnosing an autoimmune problem would explain where the POTS came from.

Hi, I have had POTS for around a year now. I have read on this forum that it may be linked to an autoimmune problem. I have also had a white patch on my face for around three years. I do not have any other white patches on my hands or anywhere else. A dermatologist felt that it may be vitiligo, which automatically made me think of my POTS. (I used a cream on this precise area for a few months before it turned white, so I think it may not be vitiligo, but some adverse reaction to the cream I used. ) I have had my ANA tested, and it came back fine. Are there any other tests that can be done to reveal an autoimmune disease? Thanks, Abby

Hi, I used to take Lexapro. It helped me with my POTS> I had side effects - insomnia, night sweats and vivid dreams, but I would have stayed with it if not for the 20 lbs I gained in 10 months. I switched to Effexor now, and I am still working on getting the dose right. It seems that when the dose was too low, I started feeling POTSy right away. Interestingly, I am also thinking about trying to have another baby, but I am nervous about how my body will handle it. According to my doctor, she checked with a psychiatrist, and while "officially" the FDA considers most SSRIs category C - which means not enough research was done, statistically they are really OK to take while pregnant. THe main issue is that the baby experiences withdrawal symptoms the first few days after they are born. For the record, have a 9 year old son and I took an SSRI while pregnant with him (no one warned me against it) and he is fine. He did cry a lot the firs tfew days, and we didn't know why... Of course, ask your doctor, don't rely on me! Hope you feel well soon! Abby

Hi, Weird question. Since my recent regression, I have random pains in my teeth/gums that move all over the place. I went to the dentist, and he saw no cavities where I am feeling the pain. Extremely strange and I was wondering if this could have anything to do with POTS... I know its a long shot. . Thanks, Abby