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Hi all! Has anyone had physical therapy for POTS/dysautonomia symptoms? I was just curious if it worked for you and what you found that helped you? I have seen online that a couple of therapists that work with POTS patients exist, and was wondering if anyone has seen them? I have been trying to brainstorm this route of treatment and was looking for any guidance ya'll may have. Thanks!

I just have to say WOW!!! Congratulations! That sounds wonderful! Thank you for sharing what you have found!!!

I hadn't thought to look at Costco! Thanks for the tip! That is another thing to add to look into/ get! Along with humidifier, compression stockings, etc. etc. etc... The list always seems never ending doesn't it! I think it may have to be a Mio...

Thanks for the humidifier info! Yet another avenue to ponder!

Thank you for your help! Yeah, I probably need to get it checked... that did not sound fun! I guess it will need to be added to the to do list!

Hi! What symptoms did he think the abdominal binder will help? Sounds like you are going through a lot, but that you are getting some help and hopefully some questions answered! I just wanted to wish you luck with everything and hopefully you will get relief soon!

Hi all!!! I have another weird question! So, for a couple months now my ear lobe has been quite painful especially in the cold. I also have like three lumps inside the ear lobe itself. I waited for a while to make sure it wasn't some weird acne thing. But, it has gone on too long. Plus you can't see anything, I can just feel it inside. (no raised bumps) So, besides it being weird and kinda nasty sounding, I was wondering if anyone had any insight on this? It is just weird and sometimes the pain is a nuisance. Any help would be appreciated! Sorry for being weird and gross!

I also took forever getting back to this topic! I am still looking into them. I may wait until after my 30 day event monitor to decide anything. Thank you all for your help!

Hi! Me again! Anyways, so I remembered where I had seen that some drs. say that we should use sea salt vs. iodized table salt- it was on the NDRF board. So, I was just curious to ya'lls experience with this. ???? As far as the long term effects of salt... I was also doing a POTS web search the other day in found a little blurb on how the high salt diet does increase our risk of heart problems on the Merck website. I realize it is probably not a huge thing, but with what I learn in classes and everything I guess it makes me uneasy sometime the things I have been told to do to reduce symptoms. I feel I actually eat worse now then before, because of trying to accomplish different things. Anyone out there with the cardiac or medical background have any knowledge on this topic? (and everyone else ) Thanks!!! What the website says: Increasing Na intake may expand intravascular volume and lessen symptoms. In the absence of heart failure or hypertension, Na intake can be increased 5 to 10 g above the usual dietary level by liberally salting food or taking NaCl tablets. This approach risks heart failure, particularly in elderly patients and patients with impaired myocardial function; development of dependent edema without heart failure does not contraindicate continuing this approach.

Grarduh: I took me forever to remember to respond, but I thought what you said probably does have a lot of truth for myself and what I have experienced/observed. That was good thinking! I had not put it together like that yet! Somedays and places are better than others... So, I wonder... does anyone use a humidifier and find that helpful? Thanks!

Mary: Hi! PVC= Premature Ventricular Contraction PAC= Premature Atrial Contraction They are pretty much like they sound.

Sushi: LOL, you're in Florida, yeah a wetsuit would be an option. Here you have to deal with everything being frozen over with a layer of snow on top! I too have thought of yoga, but I get very dizzy with about everything when I try it, and shaky, and then it is all down(hill) from there! (i fall down)

Thank you all for you useful replies!!! Sorry it took me a while to respond with the board acting up and well ya know feeling crappy, doing errands, dr. appmts etc... But, yeah that was pretty much what I had thought, but figured that I should check after the questions I had been asked and things I had been told. I don't think they meant anything by it etc. They have great knowledge in their field and know particular settings better than others and are probably more used to seeing older patients in cardiac rehab, and those in acute care in the hospital. As physical therapists they have some knowledge of these tests, but not as much as those who prescribe them and use them on a daily basis. I do think they kinda jumped to conclusions, but I think they were looking for info. on what the future may bring. Anyways, thank you so much for your responses! I feel better now, because I definitly do not want to think about a pacer at this point!

Yeah, I too am currently doing the same type of heart monitor. It is annoying to call it in, and yes not being able to use cordless or cellular phones is annoying! I don't have a phone line at my apartment, so I have to wait for when I am at home with the folks for the holidays. I think that mine have have gone off once and I have had it over 10 days. I kinda think that part of the monitor at least on this one isn't that reliable. It doesn't even do anything if one of the electrodes are no longer on me and are on my shirt! So, I hope it works, and it wasn't for nothing! I also wish that it would pick more up, like PVC's etc... Anyways... Good luck with yours!

Thanks for posting this! I had thought and wondered on this as well. I have always been pretty skeptical about them. But, I have read about everyones experience with sunlight and Vitamin D deficiency, and had thought about it. I have no real clue. I have though started looking at sunlight in a whole new light! (pun intended) I will try to get more sun! I also have always hated dark rooms, I yell all the time why are all the lights off? I NEED light! I have always been this way! And like someone mentioned before living in Ohio doesn't make it easy! (i couldn't live in Alaska!) Maybe I should move to Hawaii! (oh, yeah it is hot there.. that won't work!)

I guess now that you mention it a get that a little, not much or frequently though.

Hi! I just wanted to add that B12 deficiency is also called pernicious anemia, a type of megloblastic anemia. Which can result in peripheral neuropathy, which may have been what you are refering to with your leg. If it is caught and treated you can stop the progression of the neuropathy and I believe that you can also later possibly slowly fix the damage that had been done. (I am not 100%, b/c I am not a dr.) Also, B12 and folate together are needed for absorbtion of each other, so originally they may have been looking to see more of who was the culprit (causing the problem), and which one was the side effect or both. But, what is important is to know what the blood tests say, do they indicate both deficiencies? And then the treatment the dr. thinks is appropriate. I would think some type of B12 supplementation may be necessary. As far as the folate make sure before taking that it is what the dr. suggests. It may not be needed if the B12 is straightened out (I am not positive on, but MAY). Also, B12 has something to do with the absorbtion of calcium I think... does that have something to do with the bone pain? Good luck!!!

Sounds interesting! Good luck!!! Hope all goes well! Let us know when to watch!

Hi! Thanks for posting this! I have been battling myself on the same thing as well and am curious about what others have found that works for them. Swimming definitly sounds like a great solution (as far as the mechanism of movement and what it does for you), but for myself I just wouldn't feel safe. I am one of the ones that they have told under no circumstances enter a hot tub for fear of drowning, and I can not stand/tolerate heat of heated pools and the surroundings. I live in Ohio so outside swimming now is out of the question! Treadmill and bike sound like good options, but honestly I get bored very easily! I can not sit or walk in the same place for very long. I don't have great access to either as well, although I could work it out a few days a week. I am also VERY uncoordinated and have always felt like I would hurt myself on a treadmill when I am on one. I also am not one to ever run outside, it would not happen. It is boring, then there is allergies, and or less I strapped a camelback to my back I would be thirsty and dehydrated before I got ten houses down! You would see me on the six o clock news: delerious idiot found roaming the streets running like Phoebe on "Friends"! So, yeah I do not have the answer, but am definetly looking for one! At this point I guess I try walking as much as possible, stairs (not too many flights at one time), and doing some lunges/squats. I have to be one of the worst at this, and I think this is one of the areas were my can't sit still, or do one thing for too long really kicks in! (I think this is where they may have gotten the ADD thing from!) Good Luck!

Hi! Yeah, I too have been tested time and time again and all has looked normal. They have also always concentrated on there might be an autoimmune component for myself, but nothing has been determined. I have had a neurologist tell me that for what it is worth he thinks I have RA, but that is all that has ever been really said or done. They ruled out lupus. So, for myself as of now from what I understand mine is more neurologically based.

Happy Birthday!!!

Hi! What symptoms are worsening? Did a dr. put you on these supplements? I was just wondering b/c of what you said with the ratio. I think maybe what you were saying on not taking the calcium as you had been maybe what you are noticing. Because you do want some kind of a ratio with your electrolytes and if you suddenly stop taking one, you may notice the side effects. If the magnesium was working fine before, it may not be the culprit, and it may be possible to "mess" the ratio up more if you lower the dose, if this is what the dr. recommended. Calcium is very important in the electrical conduction of the heart, so with the sudden drop in taking it, you maybe feeling the effects. Hope that makes some sense, and helps more than hurts! (b/c I am not a dr./ so can't swear by it)

Hi! As far as what works and doesn't... I think they have covered a lot of it... it is very individual (a lot of hit and miss), there is also some of the established hints out there on what to try and avoid. Some find diet real important (ie. low carb /high protein). Some eliminate things like gluten or dairy. As a rule try to stay away from sugar as much as possible (I am not good at always! ). As far as chinese food I have seen somewhere that chinese food can be one of the worst kinds of foods for us b/c of the carbs and possible MSG. MSG could be a trigger for some, esp. if you have migraines. Also, there is a ton of salt which is good, but I am not as sure about the intense rush of salt on us, and if that is the best. But, I think the worst thing about it is the carbs, along with lack of fiber and protein. I myself am not very familiar on the chinese herbs, although to be honest I am wary. Actually, I hesitate with any supplements, because it is something else for your body to react to. If you are looking to try some I would say it is important to consult a physician, maybe you can find one that is familiar with them and assist you. Also, make sure to read up on them. Check out what their mechanism of action is and side effects, because many of them maybe contraindicated for use with any meds you may be on or for those with hypotension. You may not want one that lowers blood pressure or increases a nervous system that may already be on high alert. I recently I believe on a previous post was warned on the use of ginseng and gingko biloba, and have chosen to not take that anymore. What are you thinking when you say chinese herbs? I hope this helps you somewhat!!!

Kendra: I forgot to ask... what is the glue for?

Sushi: Thanks for the heads up on the online sales. I will have to check it out!