yogini

You're lucky that you have a good POTS doctor. I have seen a few doctors that are listed on the different dysautonomia websites. Not to be a downer, but most of them really did not know as much about POTS as I hoped, and a couple of the appoinments were actually very upsetting. The doctors told me I was fine now, to go off my meds. etc. After 2 years of this, my good old cardiologist, who doesn't know much about POTS, has been the best person for me. At he least believes I have POTS and need to be on my medication. Even then, I can understand why you want a second opinion, because, until I am cured I am sure I will keep trying these different doctors on and off, whenever I have the energy. I think there is nothing to lose, as long as you are prepared that the new doctor might not able to help. Good luck, Rita

Thanks guys! Just my luck, I got a call from the nutritionst saying that they had received my referral, but they were not sure that my insurance will cover it. ..what a surprise...LOL! I called my insurance company and they said they pay for it for HMO patients, but not PPO patients, which is what I have. Drives me nuts, because I switched from HMO to PPO after I got sick b/c it was supposed to be better coverage. Anyway, I have to sort all of this out before I can see the nutritionist. I will definitely post after my appointment... -Rita

I think there are studies about this. I have heard that the number of females to males is 4 to 1 or 5 to 1. It does make sense - women tend to be smaller and smaller animals naturally have less blood volume and more rapid heart rate. This would make us more prone to POTS. I am sure the hormone fluctuations don't help. Lucky us!

ENT is an ear, nose and throat doctor. I think they can test for BBPV. I had this inner ear testing and I think a few others here have too. I think it is a little like POTS, because the test results don't tell you 100% whether you have it or not. It's really frustrating, because it's hard to get a definite answer about what's going on. My doctor told me the exact same thing - my dizziness was not related to POTS because my BP and HR were normal while I was feeling dizzy. I went to 3 months of physical therapy for my inner ear and my symptoms went away, and then they came back. That's when my docs figured out it was the POTS that was causing the dizziness, not an inner ear problem. I will say that the physical therapy did help my dizziness, though! There are a few other people here who do have a definite ear problem on top of their POTS...hopefully they will chime in. I just wanted to share my story, because my dizziness turned out to be from POTS.

Welcome home. Hope you feel better soon! Post an update when you get a chance.

I had a physical with my PCP today, who I hadn't seen in 2 years since I first came down with POTS. I stopped going to his office because I felt frustrated that I wasn't getting much help from him. At the end of my appointment he said, "Wow. I haven't seen you in a long time. The last time I saw you, you were so dizzy you could barely sit the chair. You look a lot better now." It really felt good for me to hear that, because at the time I didn't think he really believed that I was sick. I guess he did believe me, but he just didn't know what to do! He asked me a little bit about POTS and said that he'd never heard of it before, and that none of his patients had it. I feel bad, because I was so angry with him for not helping me, but I think he is just clueless more than anything (and granted he could have tried to look it up). I am glad we are doing things like the brochure and bracelet project, because raising awareness for POTS could really help us with our doctors. I guess some of them mean well, but just don't know enough to be helpful. Also, my friend went skiing in CO a couple of weeks ago and had really bad altitude sickness. She said her heart was beating really fast the whole time. She passed out a couple of times and couldn't do anything during the trip. She told me that she thought of me, and said she couldn't imagine what it must feel like to be like that all of the time. I know most of us feel like we talk about our condition, people don't seem to understand. It feels great to know that I got through at least a little to a couple of people...

Congrats!!

I just got a referral from my PCP to see a nutritionist. One of the doctors I saw a few weeks ago suggested that I see one. Have any of you seen one for your POTS? If so, what type of diet and/or supplements did they put you on? It would be great to tell them what other POTS patients are doing in case they haven't heard of POTS (which I am sure they haven't). I read the website for the place where I am going, and they give you a 1 1/2 hour evaluation, and then you have follow up visits to adjust your diet. It sounds very thorough, so I am really excited. Even if this helps just a little, it would be great. -Rita

The only thing with broth is that you have to be careful, because most broth has MSG in it. Sometimes it is labeled as MSG and other times it's called by a different name, like hydrolyzed vegetable protein. I drank Campbell's soup for a while, but when I switched to organic soup broth it really cut down on the headaches and nausea. Must've been from all of the MSG in the Campbell's. The broth I now use comes in a powder. It costs about $5 per jar, but it lasts for a month or two, so it actually comes out much cheaper than Campbell's. Plus it's easier to carry than all of those cans!

Luckily I don't need a car where I live. I wouldn't have driven for the first year of my POTS because I was so dizzy all the time. I think it's smart to use your judgement and not drive when you aren't feeling well. At this point, there are still off days or weeks when I wouldn't dare to get behind the wheel. But on a day to day basis, I think I'd be fine. I have driven several times without any problem. We are all so different in our symptoms and the severity of our POTS, so I don't think there can be a blanket rule. I think this needs to be an indiviudal decision for each of us, based on our symptoms. Also most people with POTS don't have syncope -- although some do, this is more of an NCS symptom. I have no scientific basis for saying this, but from reading this forum for almost two years, I'd guess that most people here DO drive.

I think this is a good idea. When my POTS was bad, I used to have a cup of broth before I went to bed at night. That would help me make it through the night and feel better in the morning. It made me more thirsty, but that is better than being tachy!

I agree with lthomas. I think pacemakers are more common for NCS, another form of dysautonomia, than for POTS. In NCS, the heart may stop or be too slow. In POTS our main problem is that our hearts beat too fast. Although it can help with both, I think the pacemaker helps more with the slow/stopping heart. There are also some people with POTS who have a pacemaker because they had a failed ablation. Other than that I think it is pretty rare. Unless your doctor is telling you that a pacemaker is required, I would definitely try all of the medical options first. If your beta blocker is not working for you, you could try a different one or a different type of medicine. You may find some more useful info on this topic if you do a search on the forum -- it has come up before.

Katherine, I love my pilates DVD, which is called Pilates Complete for Everyone. It has 4 or 5 different levels of exercise, from beginning to advanced. There are also instructions and several workouts of different lengths for each level. It is great because it allows you to gradually increase both the length and difficulty of your workout. I've also recently become a huge fan of stretching after taking a class at the gym. It is supposed to improve your strength and circulation. I almost feel like I am not exercising or exerting myself, and I feel great after doing it. I haven't heard stretching mentioned much here, but I think it's ideal for POTS, because most of the exercises are on the floor. It is really great for those off days when I can't handle something more strenuous. Here is the DVD I use: Good luck, Rita

I think the official use of procrit is for low RBC. But I think that doctors prescribe it off-label to increase blood volume in POTS patients, meaning that it is used for this purpose even though it is not the originally intended use for the drug. It think most meds prescribed for POTS are off-label, b/c I am not sure there are many drugs (if any) that have been specifically approved to treat POTS. Hopefully someday our condition will be more widely recognized so that this will change. -Rita

I will keep everyone posted on whether it continues to work. Diana, you are right that when things are bad unfortunately there is not much that can help! My only meds are low dose birth control and half a pill of atenolol each day. But you guys are right that I should keep my doctor and pharmacist in the loop. I am having a complete physical in a about a week, so I will talk to my doc then. The good thing is that from what I read, valerian and it seems to have been used for centuries and is very safe, with little side effects. I also tooa 250 mg, which is less than the recommended dose of 400mg. This was enough to do the trick for me. It was a big step for me to try the valerian, and I don't think I am up for trying any more supplements anytime soonj. My POTS is slowly improving. If things get worse, my doc and I have talked about trying an SSRI as the next step. -Rita

Hi Jacquie, Have you been tested for any food allergies, lactose intolerance etc? Just wondering whether you are having a reaction to something you're eating. Or have you done anything to change your routine lately, in terms of sleep, exercise or changing/starting meds? Sometimes this screws with my stomach. -Rita

Although I would give anything not to have gone through this and hate the misery of this illness, I think I learned a lot from this illness about friends, family, priorties, taking care of myself, etc. I think my answer to this post would have been a lot different if my form of POTS were more severe and wasn't getting better. I can understand how those of you whose POTS is more debilitating don't see anything positive.

I am one of those people that has always been really reluctant to try herbal supplements because they aren't regulated. I am also worried about whether they would trigger my POTS. I've been under a lot of stress over the past couple of months which has made my POTS worse. I tried sleeping pills and they helped me with the sleep, but even after a good night's rest, I couldn't seem to shake that constant wired feeling. My therapist told my doctor I should try Klonopin, but my doctor said that if my problem was sleep related, that I should try Ambien instead. My therapist also suggested Valerian, and I'd read about it and heard about it on Dr. Weil's CD. It is supposed to help you relax and sleep. Well I finally broke down and tried it the other day and it totally helped me to feel relaxed. The wired feeling went away almost immediately. At first I tried to take a nap and couldn't fall asleep. A few hours after I took it, I started to fall asleep. I was so excited, because it was only 9:30 and usually I don't fall asleep until 1 am. I wish I had tried it ages ago. I'm not planning to take it every day - just when I can't shake that wired feeling. It might not be for everyone, but I just thought I would mention my positive experience, since I rarely see valerian mentioned on the board. -Rita

Pooh, I would go to the ER. I'd hope they'd take you seriously if they tell you you've been fainting. Even if they don't admit you, maybe you could at least convince them to test your potassium and sodium and give you an IV. You don't have much to lose. At worst they will be incompetent and tell you you're fine, which wouldn't be the first time for any of us. I think it makes sense to do it through the cardio. Feel better soon, Rita

I got my shoes last night and I LOVE them!!!! I only wore them for about 20 minutes or so walking home from the store. I was feeling really tired and I actually felt a bit more energy from walking, probably because the shoes were helping my circulation. I think I can walk faster with the shoes too! Can't wait to see if this keeps up in the long run.

I'm with all of you. I do find that I am able to do more and more over time, slowly. But I can push myself only so much. For me the way that I am able to stay mostly functional is to stick to my routine and eat right, sleep on time and light exercise. I have to stay away from the activities that trigger POTS like stayingh out late, too much exercise, alcohol, etc. I need to take breaks in between activities and also take days off in between the days that I am active. If I push too hard, I get reallly bad headaches and nausea which last a day or two. If I really overdo it, I have to pay for it for weeks sometimes. It's so hard to find that right balance. It's so great to find people who understand!

Morgan, Thanks for the update. Still waiting for mine and am chomping at the bit. I wanted the grey spott ones because white would get dirty black was too dark for me! I am sure theyare going to help. Keep us posted on how it goes. -Rita

I take atenolol - it's my lifesaver. I know that it wears off over time and it's half of your system in 12 hrs. That may be why you weren't feeling well by the next morning and even worse by the next afternoon. Beta blockers also take a while to get used to. It took me at least a week to adjust to mine, but it was well worth it. The heart rates that you are mentioning actually seem fairly normal for a POTS person, but definitely talk to your dr.

I hope it's nothing serious and that she feels well soon!

Hi DSM, I had really HORRIBLRE dizziness from POTS. The things that helped the most were the things that help my POTS in general - lots of salt, fluids, beta blocker, florinef, compressionhose...also exercise and practicing walking. Practicing walking was key, and it did get easier over time. I've heard all of the dizziness meds make you drowsy. My docs weren't sure they would help me because my problem was from not enough blood going to my head, and not the usual inner ear stuff that people take dizziness meds for.