potsgirl

City....Tucson.

Alyssa, You poor girl! I'm also a fainter, but I usually only faint once in a day. If I were fainting up to 30 times a day (how does your doctor explain that? Low BP?) than I would definately purchase and wear a helmet around the house and other places you go were you might be likely to faint!

My doctor definately believes in exercising as much as possible to help prevent deconditioning of the body. I agree, some days it's just really, really hard and some days it's a little easier. I have a treadmill at home, and also go to a gym where I do the EFX machine. On my good weeks, I do 2-3 days at home, and 1 or 2 days at the gym. I can't do much with weights because of my small fiber neuropathy (pain in my hands/wrists & feet/ankles). Obviously not everyone here can participate in exercise, but there are also good exercises for those who have to do them in a prone position, too. I believe that the exercise has helped my symptoms quite a bit. Sometimes it's the days I feel the worst when my exercise is the best.

Hi Steven, Welcome to the forum! It will provide good support and information for you, I hope. I was a little concerned to read about one of your eyes drooping and the thick discharge you're getting. That sounds like it may be something for a neurologist, eye doctor, or your PCP to check out. A lot of us tend to throw every symptom into the 'POTS' bag, but sometimes you need to get things checked out that may not be caused by autonomic dysfunction. I'm wishing you well, and good luck on your appointment Monday. Please let us know how it turns out! Jana

Dr. Gordon Ewy, the Director of the Sarver Heart Center at University Medical Center in Tucson, AZ. Phone: 520-694-8888 for appointments. Also Connie Doner, FNP, who works with Dr. Ewy (pronounced a-vee). Let me know if you're coming, and we could meet for tea!

Hi Ginger, How much Klonopin are you taking? I've found that it really helps me sleep. How long have you been on Ambien? It did nothing for me but make me feel awful. None of the sleeping meds did anything for me...darn it! Hope you get this figured out soon.

Those numbers would indicate that you probably do have POTS, but you need to find yourself a different doctor who is familiar with the symptoms...Classic POTS numbers when you stand up. I don't know where you're from, but look at the forum's list of doctors, and go see one of them~ you may be able to benefit from some meds like Florinef or Midodrine or other things (lots of salt, water, exercise) that would possibly be applicable to your specific symptoms. I'm not a doctor, of course, but your numbers certainly look like typical POTS numbers. A GP might not have the knowledge that you need to be diagnosed correctly. Mayo Clinic, Cleveland Clinic, Vanderbilt, and other doctors who are familiar with POTS and related illnesses are definitely your best bet.

Burning and pain in your hands/wrists and feet/ankles can indicate small fiber neuropathy. I have this, and am on meds for the extreme pain. It's caused by my dysautonomia, a nerve disorder....If anyone is having those symptoms, please get it checked out. My neurologist at Mayo Scottsdale gave me the punch biopsy test for this, and it was positive.

Just looking at the graph, it looks like you might have POTS. I'm sure you've looked up the information on this site about what constitutes POTS or Orthostatic Hypotension, etc. If you go from a lying position to standing, your HR must go up at least 30 beats per minute, with your BP remaining basically stable. If your BP drops a lot, that's an indication of orthostatic hypotension (OI). Both are dysautonomia syndromes. The best test would be a tilt table test. Has anyone had you do one of these yet? You could also do a "poor man's" tilt table test at home. You'll see people refer to it on the forum as a "TTT". You lay down for about 10 minutes, wearing a good BP/HR monitor, and then you stand up and record these numbers at 1, 3, 5, and 10 minutes. Could you do that and post those numbers on this thread? Hope your weekend is starting off well. Cheers!

On the bright side, at least POTS is getting some attention now. Are any of you writing letters to either paper to explain what POTS is really like? Perhaps suggest an article on adults with the syndrome and interview some people who are older and suffer from it? Maybe if a group of us wrote in....

Hi Pulp, I'm sorry you're having these troubles. I'm trying to interpret your graph, but I can't read the key on the side that lets me know what each color stands for. Could you please clarify?

The best compression stockings would probably be something that your doctor could prescribe for you, and then insurance would be likely to pay for them. You would take your prescription into a medical supply store, and they would fit you so that you have the appropriate size. Your doctor would hopefully also tell you the strength (compression) to get, or you can ask the people at the supply store. From reading the forum and from my own experience, the best ones are either thigh-high or waist high. You can find knee-high ones at your local pharmacy, and they work well for some people, but I know that the waist-high ones work the best for me. If you can get a prescription for them, you'll save quite a bit of money. Medicare covered all of the cost for two pairs for me, and the total was around $250. Let me know if you have more questions... Cheers, Jana

I also have terrible teeth that I inherited through my mother's taking a drug while she was pregnant with me. They decay very easily, and I'm a total dental-phobe. I need to go in for some deep cleaning and at least one crown, to add to my other 6 crowns, 2 fake teeth that are part of bridges, and 2 implants - and I only have 22 teeth! I dread having to go get the work done, but know I must eventually or I'll add to my number of root canals. Fortunately, I don't seem to react to the novocaine or the gas they give me. I just need help getting home afterwards, and to sleep it off for a couple of hours. It seems that a lot of us have dental issues! I also have 3 teeth with amalgam fillings.

Thanks for posting this, Anna. It is quite interesting, and I certainly have problems with my gut/bowel issues. ugh.

Alyssa, I am also unable to tolerate Florinef and Midodrine, which is a bummer because I would love the energy that Midodrine can give people who react positively to it. As most of us on the forum, I am very med sensitive and can only take small amounts of the meds I do tolerate. It sounds like they started you on a high dose - perhaps if you started on a tiny dose and slowly increased the dosage? Just an idea... Also, you may want to reconsider an SSRI. The right one could help you feel much better. My doctor gave me a prescription for a wheelchair, and insurance covered it. I only use it when absolutely necessary. I wonder why your doctor won't give you a script for a walker/wheelchair. The loss of work can be devastating...I know it was for me. Perhaps a different doctor? Good luck and let us know how everything works out. Cheers, Jana

When I get something that the local doctors can't figure out, I usually head to my neurologist (who specializes in POTS) at the Mayo Clinic in Scottsdale, AZ. There's also a clinic in Rochester, MN, and the Cleveland Clinic. They all have experts that could probably help you out. Have you seen a specialist for dysautonomia yet? I didn't get diagnosed until I went there. Just a suggestion. I hope you find out what's causing your tongue and finger issues soon, and that it's something you can work with easily. Let us know what you find out, and best of health to you.

I can tolerate cleanings, fillings, and root canals, although I hate them all! I'm definitely a dental-phobe. I feel really yucky for the rest of the day, however, and usually wait until my sig other can take me there and back.

Hi Maiysa, I also have times when I am really hot, and my fiance also comments on what an oven I am...I don't sweat during these times, either. Sometimes my feet are involved, and sometimes not. The burning feeling in my feet was my first indicator that I had small fiber neuropathy. It just came out of the blue - first my feet, then my hands, then lots o' pain. I'm sorry you're going through this right now. I hope it subsides for you soon.

I think that I have had two remissions in the past three to four years. The first one lasted for about 4 months, and I was able to work and stay up longer than usual. The second one was about the same, occurring about a year later. I would love to have another one! I'll have to look up "Armour" since I can't tolerate either Florinef or Midodrine. Great news for those of you getting relief from Armour and having remissions! Cheers, Jana

I seem to be able to tolerate some antibiotics just fine. Amoxicillin works with my body and doesn't cause my symptoms to flare. Good luck!

I was diagnosed with heart problems including bradycardia at Mayo Clinic after about three years of feeling sick. The POTS diagnosis came about 2 years later, and the small fiber neuropathy about 6 months ago.

The amount you can make on SSDI depends on how much you've worked and contributed to social security. The easiest way to check this out is to visit one of your local social security departments near you, or to call the 800 number and they can look it up by your ss#. If you haven't worked much, it will probably be a pretty small amount, but it never hurts to check. I was denied twice, then got a lawyer, went to court, and got SSDI, thank God. It's been a lifesaver. If you think you may need it someday, I'd encourage you to apply now, because it's a very slow process, usually. (It took me 15 months). You need a good doctor to help with your documentation, too. Good luck!

I know that a lot of doctors, mine included, prescribe both Florinef and Midodrine together. Unfortunately, I was unable to tolerate either one. I've heard that Midodrine really helps a lot of people, though. Just make sure that you start at a "baby dose" on any new drug if you're drug-sensitive like many of us seem to be. Cheers, Jana

What is your diagnosis? Medications? I agree with Corina that you should call your doctor about what's going on. Best of luck, and let us know how you're doing!

Mighty Mouse, Thanks for posting the percent of blood types in the US and which blood type can donate to another. Very interesting information! It'll be interesting to see where our poll goes when more members post their blood types.