yogini

Thanks, Be Still. I actually saw a great otolangologist who specialized in balance disorders. At first he thought I had a balance disorder like the one you describe. I went through 3 months of physical therapy for my inner ear. The symptoms started to go away gradually and then suddenly reappeared, so my docs had to agree that it was POTS, not inner ear. The inner ear condition would not have come back once it went away. This symptom was THE ABSOLUTE WORST POTS symptom for me. Give me tachycardia, headaches, nausea or fatigue any day! Thankfully I learned to walk a lot better with practice and the symptom only comes back when I am having a flareup, and only mildly. I walked like a snail for about a year, though!

Great post. I have 2 weird symptoms. The first is that the ground sometimes feels like it's moving up and down when I'm walking. This symptom used to be terrible and I could barely walk before. I felt like I was walking on a boat. The second symptom is that sometimes, lights look brighter than they actually are. My family believes me, but I think if I told anyone outside the POTS community, they would think I was crazy!

I never checked to see if my pupils are dilated, but when I am having a POTS episode, the lights look brighter than they really are - if that makes sense. Actually, it's like a warning signal for me that a POTS attack is coming on. There are particular places, like in the lobby of my building, where the lights especially bother me. I will have to check next time to see if my pupils are dilated.

I agree with Nina. I had the IV line inserted, and I was told it was for isuprel and/or in case they had to give me drugs in an emergency. I never needed the isuprel. The IV line came in handy, though. They gave me IV saline after the test which helped my recovery.

I just tried to set my TiVo, and it shows Extreme Engineering at 6 pm on Sunday. If any of you figure out what time it's on, please let me know. On a positive note, it seems they have at least touched upon autonomic issues a couple of times in the past few months. Now to get them to actually do a full story on one of us!

Hi Janine, I've been on the board for about 1 1/2 years and at first I felt like there are a lot of people with pretty serious POTS here (and there certainly are). But over time I have realized that there are also a lot of people who are able to work, travel, go to school and do lots of other things. There is even one woman who runs marathons. I think some of the people who are more active don't post as frequently. I am not saying that all of us can do these things, and but at least some can, even if we sometimes struggle to do so. I think we are all different and the fact that at least some of us can be active has given me hope, and encouraged me to keep looking to improve. I can certainly do a lot more now than when I first got POTS. -Rita

How much were you taking? My doctor told me to wean off by going from 2 pills to 1 pill for a week, then 1/2 pill for a week. I know I needed to be off it for 1 week before having my tests, so it probably stays in your system for at least a week - I have heard up to 2 weeks.

Hi Linda, I read more books in 2004 (when I was really sick) than I had since elementary school. I also joined Netflix, so I got to catch up on movies and TV shows on DVD. Now I am addicted to all of these shows that I never watched before! Other than that, phone and internet are really great. Hope you are on your feet again soon. -Rita

Hi Maggs, We do have several Canadians on the forum, so hopefully they will chime in and help you with doctors. Most of us got diagnosed with a tilt table test (TTT). I don't know about your meds and I'm no doctor, but I'm with Janine. If you do have POTS, a diuretic would be a very bad thing to take. Diuretics can make you dehydrated, which can be one of the worst things for POTS. Maybe there is something else you can take to help you with your BP? -Rita

Hi Maggs, I get both of these as well. Are you taking any medications? POTS can screw up your blood pressure, and meds can help and/or make things worse. I take atenolol, which helps to regulate my blood pressure. I also try to take my BP every few days and adjust my salt intake if it is creeping up or coming down. -Rita

Hi Jacquie, I had the same situation as you -- they thought I had a balance disorder on top of my POTS, but the dizziness turned out to be POTS. Before we figured that out, I went to vestibular rehab for 3 months. Even though I didn't have an inner ear disorder, the rehab really helped me -- they gave me exercises to practice at home and I did them twice a day. At first they made me more dizzy and naseous, but then they totally helped and I can walk much better now. I never tried any meds because my doc said they would make me drowsy. -Rita

Great post! I would like people to know that: I have a serious, debilitating chronic illness. POTS is a serious illness that most people don't take seriously Even if I look normal, I can't do all of the things that normal people do. I can do more things on some days than others There is only so much I can do in any one day or week I can't walk that fast, so please walk slowly when you are walking with me I can't tolerate heat My symptoms worsen if I don't sleep or eat on time. I can't be out late at night I need to plan everthing ahead of time and can't always adjust to surprises

Hi Lauren, I know that dealing with POTS can be really tough. But hang in there. You are just getting back from Vandrerbilt and you might start to feel better after your body adjusts more to the new med and you get into regular PT. If midodrine is working for you, maybe you could talk to your dr about taking a higher dose in a few weeks. And I am sure you will start to make more friends at school in a few weeks too. My POTS is not as severe, but I'm certainly not clubbing these days either. The way I have coped is by setting really small goals for myself and keeping at it until I met them. At first it was practicing walking and trying to walk for a a couple of extra minutes each week. Now that walking isn't so much of a problem for me, I am trying to exercise more and ride the bike for a few more minutes each week. Science will keep advancing and coming up with new treatments. And there are always other doctors that might be able to help, like Dr. Grubb. Do you have a good local POTS doc that can other different meds with you? -Rita

Jacquie, If you are taking florinef, that could be what is making you thirsty. It makes you retain more salt. Florinef is a steroid. Once you start taking it, I think it stays in your system for at least a week or two. It doesn't wear off the way beta blockers do. -Rita

Hi Pers, Sorry that you've crashed. It may be the new medicine, "just" POTS, or something else. Have you tried keeping a journal? I found it helpful to note my activities, diet and symptoms for a few weeks. This can be time-consuming, but it can be really helpful in pinpointing the triggers for your crashes. I know you posted about being very active lately. Have you done any non-POTS-friendly activities (exercise, long walks, alcohol, etc.) in the last week or two? Often these catch up with me several days after the fact.... -Rita P.S. Thanks for your message. My doctor is going to see if it can be covered by insurance for me! Will let you know how it goes...

Thank you everyone for your replies. You really did make me feel a lot better, and it is great that so many of you understand. Mom4cem, you are right about the rebound tachycardia. I did a google search and found mentions of it on NIH and Cleveland Clinic websites. That could definitely be what I was having and I am surprised that my cardiologist didn't mention it, because I specifically asked him about that. Right now I am too scarred from my experience to try any med changes for a while. I think I will try again in a few months and, next time, take a couple of weeks off so that I do not have to be at work during the rebound (if that's what it is). Jan, you are right that the symptoms could be from POTS or the beta blocker. They are probably mostly from POTS, but I always wondered whether the BB contributes to things. I think the atenolol has worked pretty well, so I think will keep taking my teeny dose and hope that things keep slowly improving or at least stay the same.

Thank you everyone for your replies. You really did make me feel a lot better, and it is great that so many of you understand. Mom4cem, you are right about the rebound tachycardia. I did a google search and found mentions of it on NIH and Cleveland Clinic websites. That could definitely be what I was having and I am surprised that my cardiologist didn't mention it, because I specifically asked him about that. Right now I am too scarred from my experience to try any med changes for a while. I think I will try again in a few months and, next time, take a couple of weeks off so that I do not have to be at work during the rebound (if that's what it is). Jan, you are right that the symptoms could be from POTS or the beta blocker. They are probably mostly from POTS, but I always wondered whether the BB contributes to things. I think the atenolol has worked pretty well, so I think will keep taking my teeny dose and hope that things keep slowly improving or at least stay the same.

Thanks for your replies. Jan, I agree that beta blocker use in the long term is pretty safe. And I am on a really low dose. I tried to go off the med because my dr suggested it and because I had improved. I was planning to take it only as needed. Two of my biggest problems, exercise intolerance and fatigue, and a lesser problem, weight gain, are also side effects of the beta blocker. I was hoping that going off of it would help with these things, but no such luck. I am glad I was able to lower my dose last year and I may try again in another 6 months to wean off of it. Although if I have any doubt I won't hesitate to keep taking it...and not feel guilty. Ernie, you are so right!

My POTS doctor has been pushing me for a year to go off of my beta blocker. I used to take 1.5 per day, and it took me MANY months to get down to 0.5 pill per day. I would have a flare up each time I went down in dose, and then a couple of months later I would start to feel better. I've been doing very well for the past couple of months, so I finally decided to try and stop the beta blocker. Well, it didn't work AT ALL. My resting HR went up a lot and when I started walking, forget it! This went beyond a flare up - I just felt awful and could barely be on my feet for more than a few minutes. I tried to grin and bear it for as long as I could, but yesterday I just couldn't take it anymore and broke down and took the med. I talked it over with my cardio (who is different than my POTS doctor) and he thinks I need to be on the beta blocker. I am REALLY bummed that I am still stuck taking the beta blocker. I am coming up on two years of having POTS and I was really hoping to be med free by my anniversary. I am also MAD at my POTS doctor, because he has been telling me that I am fine. I have been feeling guilty and wondering whether I really even have POTS anymore and whether I am using the medicine as a crutch. Well I guess this proves that I DO still have POTS and that I really do need the medicine. I guess should not be complaining, because at least I am fairly functional on the medicine compared to most. And I am lucky that I only need a very small dose these days. I know many of you are still looking for the right combination and my heart goes out to you. -Rita

I just started birth control in December and think it has slightly helped my symptoms. I always felt worse at that time of the month. I still do, but I think the pill has helped to even things out...wish I had started it ages ago.

I am a lawyer and work 4/days a week at a law firm. My job is very flexible. I don't need to be there at any particular time, and I can leave early, catch a breather, and finish up my work from home if needed. They don't really care as long as the work gets done. The bad part is that it can be really stressful, especially when there is a deadline. And I never really escape from my job - I often have to do at least a little work on my day off and on evenings and weekends. I take Wednesdays off, and at least it helps to have a breather in the middle of the week.

I used to be really fit too, and I can't exercise much. The exercises that work best for me are ones lying on the ground, like pilates and swimming. I have recently started working with a personal trainer doing core strengthening exercises. I was really scared about trying it, because I can't really ride a bike for more than 10 minutes. But I can do the exercises with the trainer for an hour. I find that I get a headache and nausea if I do too much cardio. I think I will slowly be able to build up to doing more cardio, but pilates and the stuff I am doing with the trainer have helped my symptoms. You may also want to search the forum, because this topic has come up a lot. Good luck!

I always thought that the POTS-related eye problems were mostly due to a lack of blood to the brain, not neuropathy. I think my eye problems are tied to my other symptoms, and they have gotten better over time. I don't know much about diabetes or relating neuropathy, but autonomic neuropathy is something different and should not lead to blindness.

I think although the effect of beta blockers is to regulate both HR and BP, they often (but not always) have an effect of lowering both. To counter this, you can try to boost your BP with compression hose, fluids and salt. Many of us also take meds to increase BP (such as florinef, midodrine or mestinon) along with beta blockers.

Hi, I've gained about 20 lbs since I got POTS. I was on florinef for a year (.1 and then .2), and I thought that was responsible for my weight gain. But I have been off of it for a year and haven't lost any weight. I have also cut down on my beta blocker, which also makes you gain weight, and I haven't lost any weight from that either! I think my gain is because I sit around the house a lot and am not as active as I used to be. I think gaining a few pounds is OK, but you're supposed to contact your doctor if you gain too much weight, have swelling around the ankles, etc. -Rita