potsgirl

Quite a few of us on the forum who have had trouble being diagnosed have ended up going to places where there are experts in the dysautonomia field, such as: Mayo Clinic (either Rochester, MN or Scottsdale, AZ), Cleveland Clinic, Vanderbilt and other doctors and places that are listed on our Home Page. I ended up going to Mayo Clinic - both the Rochester and Scottsdale locations before I was finally diagnosed. That's what I would recommend. I have a great neurologist at the Scottsdale facility - if you'd like his name, please PM me. Ah, I just saw that you are waiting for an appointment at Vanderbilt. When are you going? Did your doctor make a referral for you? You could possibly get in faster that way. You're certainly not alone, and one of the things most of us share is that it took years before we were diagnosed. Hang in there!

mwise, It seems a little odd to me that your doctor has never heard of dysautonomia - it isn't that uncommon. I'm glad you like and trust your doctor, though. Maiysa, Do you mind me asking what the other 'odd' symptoms are? Hang in there...

FYI....My doctor recently told me that cutting my medication anywhere but on the score of the tablet will give you an unreliable amount of the med. I had been cutting one of my drugs on the scored line (in 1/2) and then cutting one of the halves into halves. If you do this, you can't rely on the amount of the medication that you're receiving. So, try to get your doctors to give you a prescription for what you really need, or make sure that you double the dose of what you're taking so you can cut them in half - and save money on your prescriptions! I hope that was understandable...For example: I take 15 mg of Paxil every night, and I used to get 20 mg pills, so I had to cut a 1/2 and then 1/4 to get 15 mgs. Now I get 30 mg tablets that are scored and get 60 doses for the price of 30.

I seem to go through cycles where I feel a little better and have more energy, but then the majority of the time I have a lot of fatigue and pain. Brain fog, confusion, etc. I voted "about the same" although I've recently been treated for a blood clot in my heart, and diagnosed with small fiber neuropathy. Hope is so important to us all!

I can't eat at all until I've been up for about 2-3 hours and have had my cup of coffee, which I sip slowly. I get up really early though, usually around 5:30, so I shoot to eat about 8:30. Then I'm quite hungry and usually have French Toast and some scrambled egg beaters for breakfast. Low fat, lots of protein. I'm fairly hungry at lunch, and I have a hard time wanting to eat dinner. I usually eat 4-5 times a day, though, to get my calories in or I lose too much weight.

I love to use PJ on my lips because they're always dry. Otherwise, I use Curel Sensitive Skin lotion. It's the only lotion that's worked for me. The PJ doesn't seem to have any negative effects on me, but I don't think I'd use it on my legs or arms, etc. Can't use anything with fragrances, either. In fact, I can't tolerate perfume/cologne scents of almost any kind, which is a bummer. I used to love my perfumes.

Rachel, Sorry you're having these sleeping issues, and hope you can find something that works for you when you see your doctor. I can relate - I wake up frequently during the night and early in the morning due to the pain in my feet and hands from small fiber neuropathy. I had to lower my dose of Gabapentin (Neurontin) a couple of weeks ago because they were giving me seizures. More pain = less seizures. I'm not sure which I'd rather have. Ok, neither one!

What does SIADH stand for?

I think it may be more likely that your hair loss is tied to a particular medication that you are taking, or a nutritional issue. I know I had similar problems with a drug I was taking a year or two ago...

Ruekat - how great to see you back on the forum! I agree with what you've written. I've gotten myself up to 15mg of Paxil, but I've also been on it for the past 10 years or more. I also take it at night, and take the generic form by Teva USA. I never had weight gain with it, but I'm sure some people do. Ginger, I hope you find something that works for you. Jana

I've had the same red eye problem in photos for years. No one else seems to have them in these photos but me. I've become the 'devil woman' (song reference from the late 70s, Cliff Richards) with my family and friends. I also have large pupils, and they contract with bright light, but not as much as other peoples seem to.

Good idea for a thread, but I can't write that much! Too bad there isn't a way to put this into a poll...

Steven, Wow, that seems like a really high dose to start you off on! No wonder you're feeling so out of sorts. I would think that perhaps 2.5 mg three times a day would be enough to start off with - remember, a lot of us potsies are really sensitive to meds. Try to get to your doctor and ask him the lowest dose he thinks you may benefit from. I think I started off at 2.5 mg twice a day, and then it ended up that I still couldn't tolerate it! Are you also on Florinef? Cheers, Jana

ACB, Which Mayo Clinic were you seen at? Rochester? It sounds like all of the tests that they put me through in Rochester, MN. Very thorough.

I used to wear a spoon ring, too. I loved mine, and unfortunately have no idea where it is now! Thanks for the link, potsyturvy.

I also use the Mediven waist high stockings, 30-40 mm. I tend to bloat in my abdominal area, and have had pretty good luck with these, although I can't wear them outside during our super-hot summers here is AZ.

Hi Sandy, I have osteopenia, which is the level right before osteoporosis, in my thigh bones and hips. Great topic to bring up! I was diagnosed with this about 8 years ago, when I was 41. I need to have a bone density scan done again because it's been two years. Do you take anything for this? I went off the pill (which helps protect from osteoporsis) due to blood clots, so I need to be taking something. And, I'm actually at month 6 of no period! Yay!

I'm sorry to say that Cipro has made me very sick in the past. A lot of nausea and vomiting, pain in my stomach. But everyone is different, as shown by the post right above mine, so it looks like the only way to find out is to try a small dose after the other med is out of your system. Good luck!

I have debilitating small fiber neuropathy, and I take Gabapentin, but also take a 5 mg tablet of oxycodone in the morning when my pain is especially acute. This definitely helps my pain, and it's a small enough amount that I don't worry too much about it. It's worth it for the pain relief it offers. My PCP tried to put me on Oxycontin (which I'm afraid of re:addiction issues), but raised my dose too quickly and to an amount I couldn't tolerate. I was basically a walking zombie! Horrible experience. So, I'm happy with the pain regimen I'm on now.

I also have myoclonis jerks, but they involve my whole body and are pretty severe. Do you take any meds for this? How often do you have them, and how long do they last? Mine are getting to be more frequent and more violent, almost like seizures, so I'm calling my doctor on Monday. My worst symptoms are probably my small fiber neuropathy, weakness and uncoordination/balance- one more - fainting.

Hi Lieze, We recently moved into a home where the previous owners had bad allergies, and they (now we) have a Trane air cleaner called "Clean Effects." It's absolutely wonderful. We hardly even get dust on our furniture anymore, and the air seems great and works on most smells and allergens. I just went and looked, and it appears that they had this system added to the heater/cooling device in our garage. I love it. Hope you find one that works for you!

I had a tetanus shot with no problems.

I go through cycles where I feel really awful, and then stabilize for awhile, and then feel awful again. It seems like I keep getting diagnosed with more problems as time goes on, so I have to say that I'm slowly getting worse. I'm still hoping that I'll get well enough to at least go back to work PT...I went from being so active to a point where I get out of the house about 2, maybe 3 times a week. These excursions can only be for 2-3 hours, and then I'm beat and must go back home to rest. Keep hope alive!

I have follow-up visits every 3-6 months, depending on my condition. How low is your blood pressure going? I think you probably should be having check-up appointments every 6 months at least, and that's if you're stable. I think I might ask my doctor about this - why he isn't following you more closely. You are certainly entitled to know what your doc is thinking!