yogini

I think Nina is right that the recent reports are exaggerated. My doc said that Ambien has revolutionized the treatment of sleep disorders and the people who sleepwalk are those who are prone to sleepwalking. I am not too worried about sleepwalking, gaining weight, etc. because I don't plan to use the Ambien every day. I just want to use it to break the cycle when I don't sleep for a few days in a row. This is when I am stressed or have my period. Of course nothing works for everyone, but Ambien ovbiously works well for me for now - a little too well, I daresay! I did hear back from my doc and he said to cut the pill in half, which makes sense based on all of your replies. d4g7 - I ahe the same problem as you. My docs don't know about all of the meds that help POTS. In fact, I hadn't gone to my GP in nearly 2 years because I didn't find him to be helpful once I got POTS. I went last week because I was desperate to get some sleep. I was actually pleasantly surprised about how willing he was to give me medication - not only that but he told me I need to come in for a complete physical since he hasn't examined me in a couple of years. So perhaps he does care a bit more than I gave him credit for ... These doctors just don't know what to do with us, and I agree that it's frustrating.

After not being able to sleep over the past few weeks, I finally caved in and went to my dr on Friday. He prescribed Ambien 10 mg. I slept well two nights in a row. Yesterday I felt a little funny and today I felt exhausted. I took three naps this afternoon and I am still tired! Usually I have trouble falling asleep in the afternoon and can at most sleep for an hr. It was nice to make up some sleep, but I really need to be functional during the week for work. Do any of you who take Ambien have daytime drowsiness? I checked their website, and they say it's is a side effect. I am guessing this is my problem, because I was more tired today than I have been without any sleep. I called my pharmacist, and she said that 10 mg may be too high of a dose for me and that I might want to try 5mg. She said I can't cut the pill in 1/2, so I have to call my dr tomorrow and get a new prescription. I know many of you are on Ambien and was wondering how much you take? Thanks, Rita

They did feel really comfortable. You feel a little off balance, because the sole is curved. I think the key is that you need to use muscles that you don't normally use to keep your balance. I can see how the shoes would tone your legs and abs. However, from what I have read it is a subtle and gradual difference. I am not expecting any miracles, but it seems worth trying. Thanks again for the idea!

Hi Stacie, Dizziness was my WORST problem since getting POTS. I never had vertigo (spinning), but had the same exact gravity sensations that you mention. It was so bad I could barely walk. I used to go to work and dread having to go to the bathroom or getting my lunch from the cafeteria. I was first diagnosed with POTS, but the dizziness didn't start until a few months later. My doctors misdiagnosed me with an ear condition on top of the POTS. I went through three months of vestibular rehab, and when the symptoms came back, my doctors figured it out. The rehab exercises (like Sophia is talking about) did help, and it also helped to practice walking. I used to walk back and forth up and down the hall and gradually things have gotten a lot better. I really think that there is a strong connection between balance issues and POTS. I went to the Mayo Clinic and asked about it, and nobody seemed to know much. I don't think the researchers have focused in this area much. I am y sure mine is related to POTS, because I was a totally healthy person and everything started to go crazy once I got POTS. Have you had any ear testing? -Rita

For those of you that are interested, here is a directory of stores which carry them in the US: http://www.swissmasaius.com/shop_finder.ph...8e8b46440f38cfa I tried them on at a store near me yesterday. I definitely recommend getting fitted because they come in European 1/3 sizes. My size is usually 7.5 and the size I am getting is 37 2/3. I think I am normally 38.5 in European. They didn't have the color I wanted, so I have to wait a couple of weeks until they get in a new shipment. If I'm going to spend that much money, I figure I should at least get the color I want! -Rita

Congrats, Ernie! I am so glad that you and several others have started on Procrit recently. It looks like it's becoming a more commonly accepted treatment for POTS. I hope it's your miracle pill. Let us know!

Thanks for the info. I'll volunteer to be the guinea pig. I read some reviews on the shoes and they seem to help to tone your legs lightly. For me that is important, because small things have added up to make a big difference in my POTS. (They're also supposed help with posture, and I am a sloucher.) Because I am stuck staying at home a lot more, I've actually wound up saving money since getting POTS. I'd love a pair of Jimmy Choos, but I guess I'll get the clunky MBTs instead! I think any improvement will be gradual, but will post how it goes...

Nina, Thanks for the info. I saw that in the other post and was a bit surprised. I think most people with POTS don't even faint, so consciousness is not an issue for most of us. I live in the city and luckily don't need to drive. I used to be dizzy nearly all of the time, and I wouldn't have dared to get behind a wheel. I've tried driving a few times since my POTS has started to improve and didn't have any problem. The key is that we get to sit down while driving! -Rita

I have never really been focused on whether I am hperandrenergic or not. According to Dr. Grubb's recent article, I am not. Are there different treatments for each type of POTS?

I don't know what to tell you. I get this too, and it is worse around times of stress. OTC sleep meds don't work for me, so I am planning to go to the doctor to ask for a prescription later this week. A lack of sleep makes things soooo much worse for me. Hope you get some sleep soon. -Rita

I think Ernie is asking the right question - what happened on your TTT? You could faint, have your BP drop and/or have your heart rate go up. Depending on these, it generally tells you what form of dysautonomia you have. If you look in the NDRF handbook which is free on their website, there is a great diagram which explains all of this. The good news is that the treatments are often the same regardless of whether you have POTS/NCS/OH. (Unless you have a really rare form of dysautonomia like Shy-Drager.)

I missed this b/c I don't usually check the off topic forum. I hadn't realized that Emily had been diagnosed with Lyme. Emily, get well soon!

I have had a rough week and I started gettings strange sensations in my left arm. I get the feeling like someone is pouring warm water down my arm. I have also had minor pains in my arm. I know that pains can be a sign of a heart attack, but these are very minor pains (and I am young) so I am not too worried. I also saw a cardiologist last week and had an exam, including an EKG and everything was "fine." The pains have now gone away, but the warm feeling is still sometimes there, and it is creepy. I am thinking these are "just" POTS symptoms, but wanted to ask if anyone else had them. -Rita

I have just gotten over the worst few weeks since my onset of POTS. I have been under a lot of stress at work. The stress made me so wired that I could barely sleep all week. There were 3 or 4 nights where I lay in bed for most of the night and only got a couple of hrs of sleep. I tried OTC sleeping pills, but they didn't do much. I think that getting no sleep made everyhing so much worse. By the end of the week, I was having horrible chest pains and felt like I was about to collapse and die. I tried my usual breathing exercises, but they didn't do much. My therapist suggested I try chamomille tea and valerian root, so I am wondering whether any of you have tried them before or had any other ideas for relaxation or stress relief? I am usually not one to try herbal remedies. I have been resisting this, but think I will finally give in and see my doctor for presciption sleep meds this week. Of course the real cure for all of this is quitting my job...I wish! -Rita

Hi Corina, I don't have much time to respond, but I am very sorry to hear about this. I had an incident earlier this week where I went to a doctor and he told me to go off my meds, which to me was the equivalent of "you don't have this anymore." I felt very frustrated and upset, so I can imagine how you are feeling (which is probably how I am feeling times 100!) It all comes back to the fact that none of these doctors know much about POTS, and so they try to tell us that it's not real. It's them, not you. I hope that you are able to appeal the decision. You are strong, and I am sure you will find a way to get the care that you deserve. -Rita

I'm sorry you're dealing with neuropathy. I think most of us think of this as a problem that's part of our POTS and focus more on the POTS and not neuropathy. I think there is a Neuropathy Association, so you may want to contact them or check to see if they have a forum. Hope you feel better soon.

Thanks, everyone. I have gone to a few doctors on the Dinet list. The ones I have gone to don't know that much about POTS - the one that knows the most is lacking in bedside manner. Unfortunately there aren't great doctors in my area - I have written back and forth with a few people on th forum who live nearby. The worst thing is that all of these docs keep telling me to go off my meds and I have tried that - I really have, and I'm just not ready. It makes me feel like I have failed and I need a doctor that supports me instead of trying to push me beyond my limits.

I went to see a new doctor today that had been recommended to me by 2 different people, one with NCS and one with SVT. Both said he was very knowledgeable and nice. I haven't had a good doctor to guide me the entire time I have had POTS, so I was excited at the idea of finding a new doctor. I knew I should not have my hopes up. I went to see him today. I left work early and I was really disappointed. I think he is very nice, but he didn't seem to know much about POTS or have much to offer in terms of my treatment. I think he knew more about NCS than POTS, because he kept asking me about my blood pressure, and told me I should not be taking atenolol because it wasn't good for my BP. Well, POTS is more about tachycardia than BP issues and atenolol helps to control my tachy. My BP is fine, if anything on the higher side these days. Not to mention that I tried to go off of my atenolol a few weeks ago, and I am now officially feeling worse than I have in a year. He also told me that he was surprised I was not better, because most people either keep getting worse or get better in 6 months to a year. Really? I should introduce him to all of my friends from DINET! I am used to having good doctors in the past. I have seen several doctors since I have gotten POTS, and none of them have really been able to do anything for me. Since two people told me that this doctor is good, I just think it's POTS - nobody seems to know enough about it. I just really wish I had someone to turn to that understood the condition and what I was going through. What am I supposed to do when I am not feeling well? I just have to grin and bear it. Like many of you, I feel like I've had to figure it out all by myself from reading on the forum and other websites, and I am not a doctor. I am lucky that my rough spots are not so bad compared to many others. Because going to all of these doctors over the years has been big waste of time. Sorry for venting, but I know all of you would understand. Normally I deal with things OK, but I am just so tired of all this. -Rita

Hi Roselover, I got into swimming when I went to visit my parents last fall. I found that I was able to swim for 1/2 hr even though I couldn't ride a bike for 5 minutes. I came home and joined a gym with a pool, but I wound up with a couple of bad colds last year, so I decided to wait until the spring to get back into the pool. Right now it is freezing here, but I hope to start back up in a couple of weeks. I had the same problem with the bike that you are having with the pool. I found that my HR went too high and I felt exhausted and had headaches/nausea for a while afterward. I know it's a big pain to get into the pool for such a short time, but maybe you could start out slowly and build up over time? I found that gradually increasing my level of exercise has really helped. Good luck and let us know how it goes, Rita

I am a traditional girl, so I love watching figure skating and gymastics. The other sport I really like is diving, because it is so elegant and graceful. I used to love watching Greg Louganis. It's too bad that they show so many commercials and don't show the best stuff until so late at night, even with the tape delay. I really need my sleep, so I have missed most of the good stuff this year.

That's great that you want to go to law school. I am lucky because I finished law school (and THANKFULLY paid off my loans) before getting POTS. So I didn't really need the disability services while I was in school. I would pick a list of schools that you would have applied to if you didn't have POTS, and then call them to find out if they have a part-time program or would otherwise be willing to work with you. They may make an exeception if your health does not enable you to go full-time. Financial aid (other than loans) is pretty hard to get for law school, but a few schools offer merit-based scholarships. The only other thing I can think of is that tuition is usually less if you go to a state school. I would not worry about the loans so much, because you can arrange to pay them back over a really long time, like 30 years, if you need to. A law degree can be pretty versatile. A lot of people head to law firms after they graduate because they are a great place to get experience, but the hours can be brutal. But there are many other things you can do with a law degree - pro bono, working for a corporation, or for the government - which might have better hours or allow you to work part time. Geographic location also makes a difference - hours are worse in the big cities - lucky me, I live in NYC. I work in a law firm at 80% hrs, but my hrs are probably around 60 hrs/week, give or take a little. Believe it or not, this is considered "part-time"! At least my job is flexible, and I usually can show up a little late and work from home when I need to. I have been trying to look for something in a corporation for the past year or so, but haven't had much energy to devote to a job search. Would quit but I need the health insurance! If you do decide to do this, I think you can make it work. It's just like anything else that those of us with POTS try to do - it may take some extra effort, but you will get there. Good luck and let me know if you have any other questions. -Rita

I with Poohbear that your BP seems only mildly high. I am not sure about this, but I think I have heard that midodrine is one of the drugs that you can take as needed. Maybe your pharmacist or Vanderbilt could help you with the dosing.

Even if you are drinking the same amount of fluids, the timing of when you are drinking, salt intake (through food and gatorade), medicines, temperature/sweating and hormones/menstrual cycle would all affect urine output...though I am sure a screwy autonomic nervous system factors into things, too!

Hi dizzygirl, I find that I have nightmares or intense dreams when my POTS is acting up. I think it's my body trying to wake me up and tell me that something is wrong - that I need to drink water, take meds, etc. I actually think the POTS causes the nightmares for me, and not the other way around... -Rita

I think the Mayo Clinic has a program for people who can't afford it. You may want to check their website or give them a call.