McBlonde

I guess no one has seen this doctor. I am surprised. I expected someone would have since he is a medical adviser for DINET Web site.

Has anyone here been to Dr. Amer Suleman at the Heartbeat Clinic in Dallas?

I just tried Mestinon and got severe headache. Is that a side effect of this drug for anybody else?

Dr Oz's Show today Dr. Oz shares 2 alternative health secrets that he's vowed to try this year. The audience member taking the "hits" is a hoot! 1. Himalayan crystal salt inhaler: This salt is all-natural and pollutant-free. It helps with allergies, sinus infections and breathing difficulties. 2. The inversion table: A $100 piece of equipment that increases blood flow to the head and the release of serotonin and endorphins. http://www.doctoroz.com/videos/two-alterna...edicine-secrets

Simmy, I should clarify, I now live in Northern Louisiana. It's when we go to the coast in Florida that I have improvement. (my theory now is the humidity carrying salt water in the air I breath in.) One thing I have noticed on my labs here at home is that my CO2 levels are always high. I used to use sea salt in my jacuzzi tub for muscle aches and it was great. Now my BP goes too low and my HR too high in hot water. There was something on Dr. Oz today regarding a thing he had that allowed you to breath in sea salt. Let me look that up. Headache today - Barometric pressure 29.90 and rising

latitude.....there's that word! Is there any way the salt water in the air would have raised either my BP or blood volume?

Well, we have another storm coming in so the barometric pressure is 29.83 and falling and my headache has started. Simmy, it's very humid in Louisiana, where I live, so (for me) it must be a combination of humid (salt water filled air) and consistency (so my body doesn't have to adjust itself all the time). That's my theory. I know I am different than most people here. Maybe that's because I am hypothyroid and have a problem with cold intolerance. Okay, this is going to sound stupid, but even though they are both at sea level, doesn't Key West seem "lower" than San Diego?

McBlonde: The strange thing about weather and me is that contrary to most, I feel much better in warm, tropical areas like South Florida. The salt water in the air from the ocean does something good for me. It doesn't work in areas like the coast of CA. Simmy said: McBlonde - I guess that depends on where in California you were, as you can get from sea level all the way up to 5,000 feet or more in the mountains. You could also go to Death Valley and get down to about 300 feet below sea level, which would feel great, but the heat would probably kill you in minutes. Most of the time I feel like I have a weight on my chest, like I just can't take a deep enough breath. When I am in Florida in the ocean air, that heaviness completely goes away. The only places I have been in CA are coastal areas, from San Diego to San Francisco. While there is an ocean and beach and warm weather especially in San Diego, it just doesn't work like the Florida coast for me. I don't get that feeling of being able to breath deep, etc. What's the difference between the coasts of FL and CA..... humidity? Maybe there is more salt in the air in FL than CA? One thing I remember my doctor telling me was that it wasn't so much what the barometric pressure was, it was how often and how drastically it changes versus living in an area where it was more constant.

Yes, me too! The strange thing about weather and me is that contrary to most, I feel much better in warm, tropical areas like South Florida. The salt water in the air from the ocean does something good for me. It doesn't work in areas like the coast of CA. Do you all think that could be because of the differences in altitude?

I used to have really bad panic attacks. I don't know if it will work for everybody, but my doctor prescribed Klonipin for me to take at night and I haven't had a panic attack since and that was years ago. Panic attacks are awful aren't they?

Babette, I totally relate to what you are feeling. Some of my 2 worse (right now) symptoms of POTS is the headache and nausea. When my doc tried me on Midodrine, wow, my headache got way worse. Now he wants me to try Mestinon. I am still just looking at the prescription. I haven't gotten it filled yet. I, too, can only take small doses. I hate just doing this by trial and error and seeing how it feels.

Yes! For years I wondered why I could no longer stand up at church and sing or when my kids were small reading out loud to them was hard. I just couldn't imagine why it bothered me so much. Nowadays, I also have some days when I can't (or don't want to) talk on the phone much. Not sure what all that's about, but I was fascinated to read these were symptoms of POTS. Does anybody else on here have the telephone issue?

Deb, The way I understand it is that the definition of POTS used of at the Mayo Clinic, this is not accompanied by a fall in blood pressure. Mayo defines it as 2 different diseases. 1. POTS 2. Orthostatic Hypotension (or) Neurally Mediated Hypotension

I just thought of one good thing about POTS!! It's not invisible like CFS. You actually have objective tests and measurements that you can see. i.e. my husband can see the HR of 150 or the BP of 68/48. I am very lucky. He has really stepped up to the plate and taken over so much.

Thanks everybody for all your advice! I really, really appreciate it!!! The strangest thing just happened. I know when my blood pressure drops because I get nauseated. Today was a beautiful warm sunny day here, so my husband and I walked down our driveway and back a couple of times. All of a sudden, I felt nauseated, so we came in and I took my BP and HR. My HR was 132 and my BP had dropped so low it wouldn't register. So......I laid down and my BP came back up to 109/60. Isn't that weird? I had no idea that my BP was falling like that....not only when I go from lying to standing, but also when I am just walk along. No wonder I have a headache and am nauseated so much if my BP is shooting up and down so dramatically.

Thank you all for such very good advice! The irony of it all! I have my BS in health information and MA in organizational development and prior to getting sick, I was in hospital administration. Since developing new symptoms in August, it's affected my cognitive abilities. Even starting this thread and writing a response takes me forever. It's like I have lost my higher thinking abilities to put everything together. (See, that's an example.... I can't think of what that's called ) Even trying to keep up with a diary of daily symptoms is next to impossible. It's as if I have ADD now. I can't explain it. Anyway, me actually putting together what I know intellectually what I need for SSD is not possible. I have talked to one lawyer in Dallas whose approach is to start with you at the application level. He believes that if you fill the application out knowing all the rules, you have a much higher rate to get approved on the first try. So, what he needs to do that, is the documentation of an official POTS diagnosis. That's why I was thinking of Vanderbilt. It's near enough. Then, the local guy will follow what they recommend, if that's how they do it. BTW, I was in hospital admin when I got sick. Out of no where a severe fatigue hit me. It took me until 2003 to find the right doctor, a neuro-endocrinologist, who discovered my pituitary problems. I should have filed then, but it felt like it would be giving up on getting better.......admitting that I would never get better. I know better now. You can receive disability and if you have a miracle recovery, you have the option of trying to work before giving up your disability. Anyway, all that didn't happen. Starting the meds in 2003, getting alot of rest. Using what energy I had sparingly, I tried to go back to work just as a receptionist. I was only able to handle that for about 8 months. Then I tried a completely sedentary desk job where I was on the phone all day, but I just couldn't handle it and I got too sick again. In 2007, I tried again at a doctor's office. I really thought I was okay, but I wasn't. Because of my background, they wanted me to be their administrator of their surgery center. And oh how happy I was about that...... An opportunity to be myself again!!! What a unrealistic view of my own health and ability to cope. in 3 months I was skin and bones. I had lost over 30 lbs. I was emotional. I needed to be at work first, but NO MATTER WHAT I did, I couldn't drag myself in before 9:30 and even at that time it felt like it was the middle of the night to me. I was so nauseated, too. Finally, on the verge of collapse, I stepped down and just did the accounting. Coming in at 10:00, working through lunch and doing absolutely nothing else but resting in bed when I got home and on the weekends. I did that until August. In August my cognitive issues were so bad that I got lost going home from work a couple of times. I just would be driving home and look up and suddenly not know where I was. It only last a few moments, but it was scary. At the same time, I developed really awful headaches and nausea that only were relieved by lying down flat. The doctors that I worked for decided to outsource accounting and they urged me to file for disability. As employers, they didn't think I was well enough to work and will support that in writing which I think should help. Turns out, the headaches and nausea happened when I step out of bed. My BP drops to nothing (the Florinef I was taking for that from 2003 is no longer working) and my heart rate shoots up 40 or 50 points. When the doctor told me the new issues were caused from POTS, I had never heard of it. I could not believe my eyes when I saw the symptoms list. These are the symptoms that I have from the list: Fatigue Fainting or nearly fainting Nausea Headache Generalized weakness Heart Palpitations Tremulousness Postprandial hypotension Feeling of difficulty in taking a deep breath Loss of sweating/now sweating alot Cognitive impairment Cold hands Irritable bowel syndrome Some Blurred Vision unrefreshing sleep and an increased need for sleep Myofascial pain (like fibromyalgia pain) Tachycardia Exercise intolerance Clamminess Anxiety Loss of appetite Feeling full quickly Flushing Intolerance to cold Feeling cold all over Insomnia ? can?t go to sleep until 3 or 4 low blood volume Hyperventilation Aching neck and shoulders Noise hypersensitivity Some loss of equilibrium Muscle aches Polydipsia Weight loss/gain Feeling detached from surroundings I suspect my POTS has something to do with the hypopituitary, low renin and low aldosterone I have. My thought was that a summarization of the above from Vandy would help. Sorry this is so long!!! But whenever I feel like I can type I have to do it then 'cause I don't know when the next time will be. Thanks so much for listening!

Hello, I am trying to get it together enough to file for social security disabilty. I have an endocrinologist that treats my endocrine diseases. So, I will have his medical records for those issues. Back in August, I started having bad headaches and nausea and while in the process of trying to determine what was wrong, I happened to see a local endocrinologist who used to be in West Virginia and his research there was POTS. He has done the "poor man's tilt table" test on me several times over the course of these months and on each occasion my heart rate has gone from about 80 lying down to 120 - 170 standing up. He's tried Midodrine and I only took 2.5 mg, but my headaches got really bad, so I couldn't take it. He plan is to try Mestinon next. I discussed with the value in finding out what particular type of POTS I had and he suggested Vanderbilt. In reality I know that they can only treat the symptoms, just like he is doing, but I wondered, as far as documentation for my social security disability, would that be a good reason to go ahead and go to Vanderbilt? Does anybody have experience with Social Security Disability and Vanderbilt documentation? Thanks!!

Thanks! I'm in!!

This is a really good article on your adrenal glands. It explains why your body is craving salt and why you need to eat more and perhaps take salt pills if recommended by your doctor. I couldn't copy it, but here is the link. I hope the info on salt and aldosterone helps. http://www.goodhormonehealth.com/youradrenal.pdf

Hi, I'm new here. My endocrinologist just dx'd me with POTS. I also have orthostatic hypotention. I just can't believe all of the symptoms that I have that I had absolutely no idea were symptoms of a disease. I just had to jump in on this thread because I thought I was the only one! Now I know why. When I got out of the shower yesterday I didn't feel well so my daughter took my HR and BP. My heartrate was 170 and my BP was so low that it wouldn't register.