ajw4790

I am new, but it sounds like from what I have heard that you have been through a lot! I hope that you are feeling better soon!!!

I don't know, but maybe potassium rich foods or juices that have a lot of potassium? I know its not a supplement. Or do children's chewable multivitamins have enough in them?

I am not sure what you are meaning? I think the word benign is throwing me for a loop. Could it be that High BP can lead to other serious cardiovascular problems, stroke etc. And what you have maybe (b/c I don't know what your diagnosis is) is not apt to cause any further problems then the symptoms themselves. So, you are not going to have a heart attack or stroke b/c of it, there are other risk factors for these events, but they won't likely be caused because of your current BP fluctuations. Is that what you are talking about? Hope that helps!

Hi all! I was just wondering how you suggest starting to discuss supplements with your dr. Mine so far haven't mentioned it, and seem to jump more towards meds. I would like to take less meds. They seem to not like when I suggest things, or try to do something than what they originally recommend. If I don't do what they say they treat me like I am not cooperating. If I come in with info. (not papers, just thoughts) or seem like I know too much they think I am trying to self-diagnose, treat etc. I don't want to just start on anything with out checking first with my drs. So, I was just curious what ya'll suggest?

I know I am new, but I just wanted to say hi and that I hope that you get to feeling better!!! I hope that they figure out what is going on and can help you! It sounds awful! I am not familiar with your story, but it sounds like you have gone through a lot! Hope you get to feeling better!!!!

That's interesting! But, yeah with everyone, not just people with POTS, probably a lot of people are some what deficient due to people's diets and sun exposure etc. But, I could see where this with everything else could add up to possibly worsen some symptoms. I just had more blood tests, I don't know if they tested this. But, just another reason to eat better and take a multivitamin! I do wonder though how if you take some daily that you are still low, or less it isn't enough.

Hi! People, including those with POTS and other forms of autonomic dysfunction can have nerve damage (aka neuropathy). For myself I was diagnosed both with POTS and Small Fiber Neuropathy. Which means I do have nerve damage. It is starting distally at my feet and hands. They tested it with the QSART test during my autonomic nervous system testing (tilt table etc). It is good that he feels that it could be reversible. The nerve damage is part of what causes a lot of POTS symptoms, temperature regulation, sweating, etc. So, yes probably a lot of us have nerve damage to some extent. But maybe try to look at it from the bright side that at least there is a test that shows why you have some of symptoms that have, and that there is hope of recovery of the nerves that have been damaged. Nerve damage or neuropathy is not uncommon, one of the populations that it happens in frequently are diabetics. As, far as the causes there are multiple as previously listed. Carpal Tunnel Syndrome is another form of neuropathy, not autonomic though. So, good luck! Wait and see what all the tests say, and what form of treatment he thinks would be best. Also, ask him questions. It sounds like he is really working with you and knows what he is talking about. Hope this helps! Good luck!

This topic was interesting to me! I thought I was always just a wimp! At least I am not alone, and now I have some helpful tips! For now I am going to work on making sure to eat a lot when I take it, and later probably try some of these other suggestions. Does this go the same for other supplements/vitamins? I haven't ever taken many, but was considering it. Do ya'll have to be careful with the ingredients?

Yeah, look online or medical suppy stores. Physical therapy or occupational type of catalogs would like be the best bet. The Sammons Preston company makes a ton of rehab equipment, you can request a catalog etc. If you have a PT or OT they could help you. If you don't have one consider going just one or twice to get a consultation on how to make your wheelchair fit you better and more comfortably. Some therapists are better than others, so it would be best to call around and ask for one that has some training with this. Maybe your dr. could help you as well?

I asked my dr. about getting allergy tested and seeing about gluten, because I had seen that it can be linked to some of my symptoms. She said because I was lacking some of the GI symptoms it couldn't be the case and wouldn't entertain the thought. I have had gastro. issues etc. just not what she specifically asked me. I wish that there was more info out there on this... It seems so wishy-washy! Good luck with it!

Dari, Are there electrodes that are not as bad for people like us? They know I have the problem with the ones they use, but they have never offered me anything different for a holter monitor. I am in need of a 30 day event monitor, but I know my skin can't take it. Any suggestions? Thanks!

Sometimes I have had problems if I skip a dose when I have been on it a while. Also, you could check with your dr. to see if it is the meds. Did you eat anything that maybe could have brought it on? Or a lot of stress? Also, I get sick feeling in the morning if I try to take too many meds on an empty stomach, especially vitamins. Also, hot tea on an empty stomach is bad news! I get very nausous. Hope you figure it out and it isn't to hard to fix!

Wow! That is interesting... I am really sensitive/allergic to different tapes/electrodes/gloves (esp. powdered) etc. Drs. etc don't seem to believe me or think it matters, but when electrodes give you that burn that lasts for two weeks of itching, burning, and raw, then it matters to you! I am also very sensitive to skin contacts with some fabrics, dog fur, etc. The list seems to grow, and sometimes it is hard to find out what set off the reactions. It is not fun!

Both of those deficiencies are interesting... For those who are deficient it isn't due to diet right? It is more due to the way the body stores or metabolizes it? So, for both of those tests (B1 and B12) they are blood tests, but they are not a normal blood screening? What are the symptoms that you had for both of those deficiencies? I had been told that some of my issues may be due to B12, but I am not sure if I have been tested. It is another one of those things that I need to ask the dr about. There are too many! And they seem to not like questions! Or give you the time to ask them!

Mine showed the same thing and they weren't too worried about it. They are more concerned with the tachycardia when go from sit to stand.

Hi! I have never been told any of these type symptoms were autonomic related. I guess they could be, but more likely it is something else. Did you have any changes in meds or activity? Or eat a lot more salt or something? With it being warm to touch and responding to NSAIDS it sounds more like arthritis. Heat can make swelling worse, so if you choose one choose ice. It would definitly be worth checking in with the dr. I hope that they can help you find out what is going on. I have a lot of hand pain and stiffness that I wish they could figure out. You need your hands to do pretty much everything, so it really stinks when they are not cooperating! Good Luck!

Overall, that sounds like a great dr! Where are you located? Just curious, I would love a Dr. that is that thorough. Wow, it sounds like you have a lot going on! I hope that with these tests and new dr. that things can start to look up for you. I have never been told anything about having heavy metal poisoning, so I can't give you any insight. Hopefully the new PCP can also help you with the BP issues. It seems odd that the other Dr. hadn't suggested those treatments to help you out, but it is possible that there was a reason. Maybe discuss it with him and your new dr.

Hi! Yeah, I took Lexapro and everything seemed okay, but then went to Celexa (it is like the generic for Lexapro-supposed to have just one molecule difference). Celexa was evil, it messed with my mood and just made me feel really weird. I couldn't sleep, went from bouncing off the walls, to kinda down on myself. Once I went off of it the moodiness went away. I now take Zoloft. Good luck on finding something that works for you. The docs kept telling me that you often have to try a couple before you find the one that works for you. So, hopefully it won't take too many tries. Also, there are too many people out there that just don't understand. All you can do is if they will listen at all try to explain a little to them, and try to educate them. Then, hopefully they may understand. If they don't listen or care, then you just have to shrug them off. All you can do is try, you can't make anyone understand. When people don't understand things they can say awful things due to their ignorance of the situation. Good Luck!

Hi again! I wanted to add that I already take Primidone, Atenolol, and Zoloft, so I would be taking these and the ones mentioned above.

Hi everyone! I went to my dr. today and was trying to get further help with my symptoms; tachycardia, dizziness, lightheaded, major brain fog, inability to concentrate, etc. I told her that especially when I get overheated and symptomatic, I tend to do stupid things and have a hard time concentrating and have brainfog etc. So, she asked me some things, and thought that I may also have ADD and to try Concerta, to see if it helps. I really don't won't too take much more in the way of meds. especially such a potent one like this. As far as I understand it has quite a few side effects and is highly addictive. So, I really am thinking that I don't want to try it. But, I don't want to seem like a difficult patient. Because minutes before she sprung this one on me we had the whether or not to try Florinef conversation. Which I was leaning towards not. But they have said to see a POTS specialist I would have to try that and jump through other hoops first. She also wants to put me on Neurontin for nerve pain/neuropathy symptoms and possible restless legs syndrome. So, I guess my questions are what experience do ya'll have with any of these meds? Should I break down and try the Florinef? What are the worst symptoms? Weight gain and bone loss? Don't some people take ADD meds for POTS symptoms? Do any of you, and does it work? I would be more likely to try it if I thought it would help all around. Should I be a difficult patient? She is a good doctor, we just don't agree on everything. I am trying to work on everything to feel better, but it is hard work! I just don't want to be all drugged up, so let me know if you guys have any experience or thoughts on this stuff. Thanks!

I feel POTSy all day, but better at night. Some mornings are pretty bad. Like this morning, everything was blurry, I was dizzy, and didn't have good control of my arms etc. I was like a rag doll.

I took inderal (propranolol) for other reasons, and didn't like it. It didn't help my tremor, I think I got insomnia and headaches for side effects as well. But, I am weird! I take Atenolol now which seems to help pretty well for migraine prevention.

For me a lot of places, but it depends on the day. School where they roast us. Shopping in stores especially with a lot of lights, if it is warm, if have to stand in line, or especially if a lot of kneeling or bending over is involved. I tend to get sick feeling when I get a haircut. Those have been some of the worst times. And outside anywhere in the heat and sun. When I was younger I couldn't take the heat and puked all over the inside of Turner Field!

Hi! I was just wondering if anyone had been told or has found out anything on what are the long term effects of these dietary modifications that we are told to make? Example: Salt? Most people are told to limit or avoid it? Yet, we are supposed to pile it on. My doc said to increase protein, specifically meat, so what is the long term side effects of increasing protein consumption? Increased fat consumption etc? Decreased carbs and sugar of course is good. And decreased dairy is likely good as long as you get enough calcium etc. from other sources. I don't know if all the extra water would do anything bad? Does anyone know how much water (fluid) is too much? I drink a ton, probably at least 3 liters a day. Sometimes possibly close to 5 liters. I am just curious what all this may do to myself in the long run? Thanks!

Hi! I am still relatively new at dealing with this condition, so I do not know a lot of the answers. I am supposed to have a Dr. appmt. soon that I have waited months for that will hopefully help me out in the understanding of everything. I know that you can try to do things to lessen the symptoms of the neuropathy, otherwise not sure on any treatment. The dr. that prescribed this test was a neurologist. Actually a team of neurologists. I do think that the key is going somewhere where they know enough about the condition to help you. For me this took yrs. (7+) and many drs. (10+) to get anywhere. So, for most it is not an easy road. My best advice not really knowing a ton about what is out there, your best bet is to get into a major and reputable health system that preferablly has close ties to a university (because they are teaching, they have more chance of knowing about the "newer"/less known conditions. My first step was a internist for a GP that was affiliated with major university system in Ohio. Then, going to a neurologist within the system that sent me for testing, and to three other neurologists. Also, I have a cardiologist that is familiar with treating this condition. Have you been formally diagnosed by a physician? Did you have a tilt table test? That would likely be the first thing to get, along with the normal blood tests etc. Then, I also did get the QSART for the Small Fiber Neuropathy. Hope this answers some of your questions! I have to go to school, I can respond more later if you have questions.