MeAgain...

Hi, Everyone. Is it possible that high sodium, hydration, and compression stockings have almost no effect for POTS? Am I missing something in the protocol? I have added about a teaspoon of kosher salt to my diet that had been at 1,500mg of sodium per day. I am wearing waist-high 20-30 mmhg compression with open toe or open foot (must be open toe/foot for work). I drink about 5-6 16oz bottles of water a day. The only difference I have noticed is that I have to go to the bathroom all the time. That would suggest to me that the fluids are not staying with the body, but I'm not sure how to approach that. Is it possible I am not getting enough salt and too much water? Will drinking the water too quickly make a difference on the body's ability to retain it? Thanks P.S. When I did the tilt table test, I did a 20 minute test that was followed by a saline drip and another 5 minutes of testing and the numbers improved. That would imply that I don't have things quite right with the protocol, right?

Another thought. Does anyone know if there is a way to inquire at one of the dysautonomia centers if a particular medication would be contra-indicated for POTS? I'm sure my ENT would be willing to send an inquiry if such a resource existed.

Thanks, MikeO. Yeah, I have something with symptoms similar to meniere's disease. I have been treating it successfully with a very low sodium diet for several years. Now that I need high sodium to treat POTS it is back to the drawing board on my ear. When I searched the forum I didn't see anything posted more recently than 2008. My concern is that that the medication which is supposed to help the fluid in the ear move better may have adverse affects on the vein dialation/constriction in the legs. Unfortunately, with the way medicine in the U.S. is so highly specialized, neither my ENT nor my cardiologist can tell me if this drug can affect the POTS. The ENT is the most competant doctor I know, but he doesn't understand the mechanisms involved with POTS, and the electrocardiologist is unfamiliar with medicine used in treating ears. When I looked up the mechanism of the drug itself, all I could find was that the experts aren't really sure how it works, but that it does something to hystimines in the brain. That could be good, bad, or indifferent for POTS. I'd hate to go through all of the high sodium diet, compression hose, exercise, etc. and nothing works, only to find out that this medication also inhibits vascular constriction in the legs. I was just wondering if anyone with more experience in treating their POTS has used this medication and if they noticed differences with POTS symptoms while on it so I can get a little frame of reference as I work on these conditions with both of my doctors.

You might also ask your doctor about migraine diet. Without going overboard (because internet sources will take this to an extreme), this is a diet that limits tyramine and caffeine as well as some other chemicals that your brain uses. Tyramine occurs naturally in many foods and can incrase in concentration depending on how foods are prepared and age. I think the changes in my diet helped me with vestibular migraine more than medication did. Foods are a big trigger for a lot of people with vestibular migraine. Keeping a food journal can help figure out triggers. A helpful source my doctor ponted me to was VEDA. It is a professional organization for vestibular disorders. They have a lot of information available online about vestibular migraine including a list of common triggers.

Hi, Everyone. My ENT just prescribed betahistine to help me cope with the copious amounts of salt that my cardiologist wants me to ingest. I was wondering if anyone here with POTS or similar has taken it. Thanks. Meg

The Alinker folds in half and is around 25lbs. It also has quick-release wheels which makes it less cumbersome than many other devices. The thing I would be concerned about is that I think it would look strange to others and draw unwanted attention. I think something that looks more like a walker or wheelchair would draw less attention. By the way, I also saw a unicycle with training wheels and no pedals. Just lean back in the seat to hit the brakes. I thought this was an excellent solution to walking while seated, but again it would tend to be gawked at as a recreational device instead of being largely ignored as a mobility device. Please correct me if I am wrong, but from what I see, most rollators are designed with a seat just for resting while stationary, or at best as a transfer chair with someone else pushing. They have small wheels. At times, I have to go down an uneven brick road and I would think that the small wheels on a rollator would get hung up. For me to be independant, I really do have to be able to propel myself with my legs while seated. Most of the manual chairs are really at the wrong angle and the seats are much to deep to give my legs access to pushing the ground. I don't have experience on trying to foot-propell with legs on a rollator, but I would think that turning corners would be a challenge. I would also be concerned about tipping over on rough ground. The option of using hands to steer seems like it would be helpful. If anyone has had success getting around independantly on a rollator while seated please let me know. As far as the cost, in the long run it is less expensive to buy the device that really meets my needs and one that will last for several years than to spend less up front on various devices that don't quite cut it for what I need. For that, all of the input from those much more experienced than I am is much appreciated. Thanks

Hi, Everyone. I am trying to find some mobility aids for POTS. My most useful so far is a flipstick cane that has a seat on top. That really helps for things like waiting in line at the pharmacy. I have been looking into various forms of rollators and wheelchairs, but none seem quite right for me. For one, I get symptomatic when I use my arms to self-propell a wheelchair. On the other hand, I neeed to be seated and move at the same time, which makes the rollator okay for resting, but not useful for getting from point a to point b. An electric wheelchair is too cumbersome and heavy. Has anyone ever heard of or used an "Alinker"? It is like a backwards tricycle without pedals and is designed for walking. Are there other non-traditional mobility aids that people are using for POTS? Thanks Meg Edit: Just saw something called a "walk'n'chair." It looks like it might be quite helpful, but it is 35 pounds. Has anyone used one of these? I like the large wheels and the short, firm seat (10" depth) that would make it easer for foot propulsion. Anyone with POTS try one of these before?

Hi, Everyone. POTS question here. My electrocardiologist told me to increase salt intake as much as my neuro otolaryngologist will allow. Problem is that I have been on a low sodium diet for several years and I am having a hard time adjusting to eating salt. I am raising the question here in preparation for talking to both of my doctors about this. I was wondering if there was any problem with mixing a tsp of Kosher salt into a glass of water and drinking it. Is there a reason people turn to sodium tablets instead of using salt? I can't see that it would be that different to the body than putting as much salt into food. Any thoughts or experiences on this would be helpful. Thanks.

Hi, People. I have been on vyvanse, a stimulant medication used to treat ADD, for many years. On my doctor's advice, I went off of it for a couple of weeks to see what happens with the POTS symptoms. I found that being off of the vyvanse lowered my overall HR, but that I still had the symptoms along with the change in HR from sitting to standing even though the overall numbers were lower. I also found that I was having a lot of problems with concentration and was making silly mistakes at work that could, if repeated over time, lead to losing employment. I went back on the vyvanse. With the diagnosis of POTS, my electrocardiologist prescribed metroprolol at a very low dose. I am wondering if others on the forum here are also on a combination of stimulant medication with beta blockers, if that makes sense to do, and if the combination is working for them. I looked online at a drug interaction checker and there is no listed conflict in taking these medications together. I am also wondering if anyone with POTS takes metoprolol on an as-needed basis instead of daily. Any experiences on these topics would be helpful in forming questions to raise with my doctors. Thanks.

I wanted to thank each of you for your responses. I found it quite helpful. I managed to get a letter from my doctor stating nothing more than I can work while going through the evaluation. So far, so good. My boss wanted to put me back at full time because the doctor did not give any restrictions. When I pointed out that a request for s shortened work day was not due to needing restrictions, but rather an ADA request so I can seek medical attention., my request was approved and it has been going okay since then. I have since had my TTT which confirmed the POTS diagnosis. Now I just need to figure out how to deal with a medical condition that requires a low sodium diet with the high sodium needs for POTS. Problem is that a "balance" between the two means not treating either one. Again, thanks for the replies.

Good to know. I do sit at a workbench to work. I'd never be able to work standing up. Even on a good day I can't even think while standing. The boss raised his concern that my work area is a distance from the restrooms, from the break room, and from the entrance to the plant. He also raised the concern that I have to get up to retrieve subassemblies and to turn product in to QC. I'm seated for 90% of the day. Even so, it is for the other 10% that the boss wants something in writing.

I work in light assembly, so I think the concern on safety is that I would pass out onto a concrete floor, or onto tools or equipment around me. There is no accommodation that I have asked for that has been denied, it is just the letter of assurance from the doctor that nothing bad will happen that I can't get. I have had this condition as long as I have worked there, but it got worse lately after a short bout with a nasty virus and I have had to be more direct with them about my condition. I may be able to get a note from the specialist I will see in a couple of weeks. From reading your responses, it sounds like I might do better just by asking the specialist for a note on restrictions instead of a note with some sort of assurance. Thank you for the replies. This is helpful.

Hello, everyone. I have a question in regard to ADA/employment (in the U.S.). I requested a reduced schedule to accommodate finding doctors and going to appointments. My employer agreed. No problem. Now the employer wants a letter from my doctor saying that I will not be a danger to myself or anyone else because of my condition (fluctuating heart rate). My doctor says that he cannot provide such a letter. Can they kick me out of work because of that? Do I have any recourse to keep working? Does anyone have any experience with this? Thanks. Meg

Hi. I'm new here. I am glad to find a forum where people dealing with debilitating conditions can share knowledge and experiences. I especially appreciate the fact that I don't have to join any major social media platform in order to participate. Thank you for that. I am a while out yet from a diagnosis, but my primary suspects POTS and all of the pieces fit. Even if it is not textbook POTS, it is something similar. Aside from finding a competent doctor and getting an accurate diagnosis, my immediate concern is that I have been successfully managing symptoms of Superior Semicircular Canal Dehiscence (SCDS) for the past several years on a low sodium diet. Now I find that high sodium intake is a large component of symptom management for POTS. By chance is there anyone out there who is also dealing with SCDS? Or more generally, has anyone found solutions for treating POTS while maintaining a low sodium diet? I can't imagine having to choose between the two conditions when it comes to managing symptoms. I appreciate anyone sharing their experiences on this. Thanks Meg