yogini

Thanks, guys. Tea, I am hoping that one of these electrophysiologists will be decent. I looked on the websites of what I think are the two top hospitals in NYC and found the names of the EPs that specialize in TTTs and syncope, so hopefully they will know something about POTS. (One of the dr's was also on NY Magazine's list of best EPs, which I will start making my way down next if things don't work out). I don't know why I didn't think of this idea earlier -- I guess there is nothing to lose, other than a few tears of frustration if the drs are cruel or unhelpful. I'll be thrilled to share the wealth if I find anything. Good luck with your appointment at Mayo. I also went there a couple of years ago. My parents are encouraging me to go back, which I might think about down the road. I still need to find someone to manage my care locally. Even if I miraculously feel better tomorrow, I have realized I need to keep looking until I find a good dr for the long haul. -Rita

On Friday I went to my regular cardio who I have been seeing for POTS, and he told me he thinks I should try accupuncture!?!. I didn't know whether to laugh or cry at that one. This is after I have been sick for 6 weeks and printed out the DINET page with all of the different treatment options on my last visit...I have only ever taken atenolol and florinef, so I am sure there is something better out there than accupuncture. I have tried over the years to find a better doctor, but each dr I go to doesn't seem to know enough about my condition or tells me that I am fine. Last year I got a glowing dr recommendation from someone who has NCS, but it turns out he specialized in pacemakers and knew nothing about POTS - he kept asking my about my blood pressure and why I was taking a beta blocker. It was a really disappointing and demoralizing experience. But, after being sick for the last 6 weeks, I really need guidance from a dr. I just made a bunch of phone calls. I have two appoinments so far, though neither of them is what I want. I have one tomorrow with a nurse practicioner for a cardiologist who is listed on the NDRF site, and then I have one in mid-March with a leading electrophysiologist in the city...which could be exciting, but not for another couple of months...I really don't want to wait that long. A couple of other doctors that I called need to review my records before I can have the privilege of seeing them. The worst part is that these are just random names I found on websites and I have no idea whether any of these people can provide me with useful advice. After all of the doctors I've seen and reading what many of you have gone through, I can't help but feel skeptical. I really don't think I have the strength to go through this again, especially when I am feeling so bad physcially.

Florinef is supposed to make you retain fluid - that's how it increases your blood volume and BP. But too much fluid retentionn can be dangerous. If your legs look much bigger, you may want to let your docotor or pharmacist know ASAP, especially if this is a new symptom.

Hi, Did you check your HR or BP when this happened? Where you being more active than you normally are? I call this feeling like I am on speed, and it does happen from time to time. For me it mostly happens when I overdo it or around "that time of the month"...but sometimes it just happens out of the blue too. When this happens, I usually stop whatever I'm doing, lie down, drink some water and take a little extra beta blocker.

Hi Lauren, I just wanted to add that I'm so sorry that you're going through this all at once. It seems 2007 has brought nothing but bad news for everyone on the forum. I'm glad other people have given you info about organizations that can help. I also echo Patricia's suggestion about asking for help from your friends and family. (I'm always hesitant to do this myself, and my therapist has been pushing me in this area. When I do reach out, I am usually pleasantly surprised.) If noone can stay with you for the whole time, maybe they could come in shifts or something? -Rita

I definitely get night sweats sometimes, especially during my rough periods. It's one of the scariest things to wake up drenched in sweat and disoriented. I usually get intense dreams right before I wake up and then I wake up confused and it takes me a few minutes to figure out what's happening. During these times, I keep my BP monitor and HR watch in bed with me, so that I can measure my vitals. My HR is always really fast and I can feel better by taking a little extra beta blocker. I always have a couple of glasses of water on my nightstand, and drinking really helps too. If I get the sweats several days in a row, I just take a little extra BB before going to bed to nip it in the bud...either that or drink a big cup of broth to bring up my BP. I do agree with the others that treating all of your symptoms helps. -Rita

Nina, That's great news! I've been working with a trainer since Oct 2005. Since last summer it has been with a pilates trainer like mkoven. We work on the machine, which is mostly lying down. I have also tried to do the bike or the elliptical a few times a week, keeping my HR below 130. (I have generally been doing this weekly, though it has been 2 months since the last time I was at the gym, LOL). I've gotten a lot of benefits along the same lines as you - it has been really gradual, but totally worth it -- I think the biggest factor in the improvement of my symptoms. Good luck with your training and keep us posted. -Rita

So sorry to hear that the appointment was cancelled. I, too, wish there was something I could do for Melissa. I am SO glad that there are others here who know more and can offer suggestions. Maybe her doctors could at least get some phone advice from one of these centers for the time being. Feel better soon, Melissa.

I have been looking into SSRIs and have read that the two most commonly recommended for POTS are Lexapro and Celexa. However, if you have tried several SSRIs and none of them has worked, maybe it makes sense to try another type of medicine? There are loads of other options available. The DINET page has a good summary.

Hi Maxine, I don't know anything about SSDI, if you are using a lawyer, maybe he/she could give you examples of how the letter should be written? It's probably a good idea for your lawyer to at least review whatever your father writes before sending it in. -Rita

Hi everyone, Thanks for your responses. What happened was that I stopped my birth control at the end of Nov and then had an exceptionally busy work period during December. I think it took a while for the effects fo the birth control to wear off, and that happened at the same time as I was working around the clock. So my body went into a bit of a shock, and then I also flew to see my parents for the holidays, which didn't help anything. So it was just one thing after the next. I was finally able to restart the birth control this past Sunday, so I am hoping that once it kicks in that will help. (This may also be making me temporarily worse.) I am still hoping my body will slowly readjust and get back to the baseline. My doctor is open to trying other treatments. However, he doesn't really know what to do and I myself want to wait and see what happens with the birth control, which may take a few weeks to kick in. I do have the option of trying other meds, but I think I need to wait, because the med that I'm primarily considering (SSRI) would also take time to kick in. There is a specialist in my city. He isn't always helpful (he told me I was fine and to go off of my meds 3 years ago). I am desperate and did schedule an appointment with him, but unfortunately it isn't until mid Feb. So I think my best option is to just hang in there and wait. Waiting is the hard part, as my POTS has always gotten better with a little extra beta blocker and rest. I am well salted, hydrated and rested, other than that I went back to work last week. This week I went in yesterday, but am trying to work from home for the rest of the week There is always the option of taking a few weeks off, but I am trying to avoid that. -Rita

I used to have my POTS under control and now I just don't know what to do. It has been over a month since my crash. While I am not at the lowest of low points, things are still pretty bad. The worst part is that I can't find any consistent way of making myself feel better. I've increased my beta blocker to get the extreme bouts of tachy under control. Sometimes I get really tachy before I'm supposed to take my dose and cannot take the extra BB soon enough. Other times, when I take the extra dose, I start to feel really sick and can tell it's because I have too much medicine in my system. I'm having the same problem with compression hose. Seomtimes when I put it on, I feel much better, other times I feel really sick after I put it on. I have always known how to make myself feel better, but I am losing any idea of what I can do anymore. Feeling really helpless here...please help!

The veins in many POTS patients don't constrict properly, and many of us experienece bright red or blue fingers, toes or other body parts. This is not necessarily because of hypovolemia - it could also be because of autonomic neuropathy (which causes the problems with constriction). Although many of us are mildly hypovolemic, I am not sure about hypovolemic shock. You can get a blood volume test if you're worried about this. -Rita

Sorry to hear this. I know she wrote about how much a help her PICC line has been in respose to my post on IV saline. Amy, I hope you feel better soon!

Hi, I worked with a personal trainer for a few weeks who was also a physical therapist specializing in water rehabilitation. She worked with stroke and injury victims. We did lots of exercises in the water with a flotation belt, including jogging. Unfortunately she moved out of town shortly after we started working together. I did find the exercises tremendously helpful and perfect for POTS. Although I have moderate POTS, exercising sends my symptoms into a frenzy. I wasn't able to do regular cardio for the longest time. I could make it through the workout sometimes, but I would feel sick the next day and the sick feeling would last for days. I couldn't manage this while holding down a job. However, I've been able to build up to doing cardio without making me sick. It took me about 1 1/2 years to go from riding a bike for 5 min to working out for 45 min on the ellipitcal machine. I think the water exercises were a helpful step for me and I was sorry I couldn't continue. If you can't get to the water, I would highly recommend pilates instead. By the way, I also tried an underwater treadmill last year while on vacation. I really liked it and wish I had access to one at home.

Hi Julie, I took florinef and atenolol for the first year of my illness. (Now I'm just down to atenolol.) Beta blockers can be great for us because they lower the HR, but many people have trouble taking them because they also lower the BP. The florinef builds up your BP and helps balance out the effects of the atenolol, so many docs prescribe beta blockers in combination with florinef. I hope the combination works for you! -Rita

Have you tried any sleep aid other than Ambien? Last time I saw my dr, he gave me a whole speech on sleep medss. He said there are some people who have problems falling asleep, others who can fall asleep but don't stay asleep, and a third group of people who have both problems. There are different meds which are better for treating each of these problems. From what I understand, Ambien is sort of middle of the road med. If you have trouble falling asleep, one of the other meds might be better for you.

Melissa, You continue to be in my thoughts. I hope they get to the bottom of this ASAP and that you start to feel better soon. -Rita

Thanks for checking in, Pooh. (I loved your poem to Melissa, by the way!). My PCP and cardiologist didn't know of anywhere that I could get IV saline other than the ER. This is frustrating and hard to believe in a big city. My cardio also kept insisting that he doesn't think that IV saline is helpful for POTS. His advice was just to take more beta blocker - but actually this has helped to control the severe tachycardia episodes and night sweats I was having. I don't like taking more, but I have no choice at the moment as the symptoms were miserable. I think the saline really would have helped me, and am disappointed for myself and for all of the others that haven't been able to get it. I've realized that I need to re-start my search for a dr who is more willing to listen and work with me, so that someone is lined up the next time this happens. I'll do this as soon as I feel a little better...at least the worst seems to be under control now and still hoping things will be closer to "normal" in a couple of weeks. -Rita

Hi, I am thinking about some of the same issues right now. My job involves a lot of stress and long hrs sometimes which makes me worse -- currently I'm in a big POTS hold due to working to hard. I could afford to take some time off, but not indefinitely. On the other hand, I have a good job, great (and understanding) boss, flexibility, and health/disability insurance. It's hard to give these things up, and I've looked for other jobs but, in 2 years, haven't found anything better. Is there anything more you can do to make the current job easier for you - hire another person, take summers off, work from home, etc.? I agree with the others that this is a personal decision. Ultimately, health is the most important thing, but it's hard to know which way to go.

I can have a drink or two occasionally. Sometimes I feel no increase in symptoms after drinking, but most times I feel a little bad for about 1/2 of the following day. It definitely helps to hydrate before and after. My POTS improved dramatically due to a pretty strict routine of diet, sleep, exercise, etc. I try avoid alcohol because it tends to throw me off of my routine. At this point, I have also lost my tolerance. Luckily I had lots of fun before getting POTS, so I don't really feel like I need it anymore...

Katherine, I don't have Hashimoto's and tolerate meds pretty well, but I am EXTREMELY sensitive to med changes. I know that going super-gradually has helped me a lot. Hope you feel better, and keep us posted. -Rita

Dizz, I was wondering the same thing. Hope you are better, Melissa!

Hi Tea, I was just printing out the "What Helps" page to bring to my dr this afternoon and noticed that it says that correcting anemia can help our symptoms. You probably already knew this, but just wanted to mention it. It makes sense because both anemia and POTS make it harder for oxygen to get to the brain. My mom has been anemic for as long as I can remember, and hers is caused by her kidneys not producing enough erythropoietin (sp?). But there are probably many causes. Let us know what your dr thinks... -Rita

That is frustrating! I never know how to react in those situations. A leading dr should not be so judgemental. Maybe you could mail him the dinet webpage or an article explaining that SSRIs are given for POTS. Glad you are seeing another dr, though!