potsgirl

Normally we're not supposed to post pictures as they use up too much space on the forum. The same is true for long quoting of others' posts. Just an FYI...

IMHO, I really think you need to get into a specialist, and soon! I've never heard advice like that, but of course I'm not a doctor, but it seems wrong to me. How low does your BP go when you stand up? Obviously you have orthostatic intolerance/hypotension, and I would think your docs would be working with you to get your BP up, the sooner the better. The Forum has a list of specialists you can find on the Home Page. I'm a fainter and also have seizures, but I have them on average about 4-5 days a week. I can't imagine how horrible it must be to have a total loss of control so often!

Wishing you the best, and that the medical community can help you out quickly. Please let us know what you find out...and do you have a diagnosis yet?

((((hugs))))

Jana

I get a lot of pain at the base of my skull, and my neurologist thinks that occipital nerve blocks (that's the part of the brain involved in skull base headaches) would probably help me. I have these headaches almost daily. The whole area where my neck meets my head can even be quite painful to touch. I'm looking into it, have an appointment at Mayo in another month....Will let you know if it gives any relief.

I also have very thick hair, and I have noticed that I'm losing more of it lately when I shower. I only wash my hair twice a week, and since it's wavy, I just let it dry. I'm thankful for the thickness, because no one can tell that I have more hair falling out - yet!

The ultimate test for small fiber neuropathy is the skin punch biopsy, which I had done at Mayo Clinic Scottsdale. There are only a few places in the states that read the test, mine went to NY. My neurologist at Mayo had it ordered and done there. They also perform the test at Mayo Rochester, and I would think that most neurologists could help you get this test. I would think that Vanderbilt could do it, too. They take a small punch out of your upper ankle and upper thigh. I was diagnosed via this test.

Good luck, and let us know what happens!

I wouldn't count on them settling, and it would probably be more trouble, time and money than it's worth. You would also likely need to have hard evidence that you are seriously ill, and a doctor that would be willing to back you up. Please let us know what your lawyer says - this is an area a lot of people are interested in. And please apply for disability. That might be your best bet.

Good luck!

Jana

Lette,

Good for you! I'm proud of you already, for all of the hard work you're doing. So if the show airs from 12-12:30pm, do you have any idea what time that would be here in the states? I don't want to miss it. Congratulations on everything you're doing!

I had my left lung pierced when they put my pacemaker in. What terrific pain! My best wishes that Kayber's surgery goes well and that's she's feeling better soon. Your family is in my prayers. Please keep us posted on how things go...

Given that you were in your 90-day intro period, I don't think you have any recourse, unfortunately. It sounds like it might be smart if you filed for federal disability ASAP. It can take a couple of tries to get approved, and I think it took me a little over a year to finally be approved for SSDI. They almost always turn you down the first attempt, then you appeal, and if you're still denied you get a decent lawyer and a doctor that's willing to write up all of your symptoms and say that you are disabled because you never know if or when you can make it into work, and go to court. That's when I won....and you also would receive all of your backpay once you were approved.

In the job where you worked for 14 months, it would have been more likely that you would have had more recourse. I'm so sorry that you're in this situation! A lot of us have been there before, but it's still so hard. Take care of yourself, and let us know how you're doing.

((((hugs))))

Jana

We've talked about having a "convention" of sorts before, but it didn't go very far. Some of the forum members have a very hard time with travel. I do think it's a good idea, though, and perhaps we could have a large get-together of those who could travel. I think the most difficult thing about planning for something like this is the funding. We would need to pay for a place to have it, and also have money if we want to get speakers to come in....If we could think of a way to get funding, I'd be happy to help plan. Feel free to PM me.

Jana

Hmmm...I am pretty sure that the law mandates that your work place must make accommodations for you if you are 'disabled.' I would check with a lawyer about that. Have you checked into getting federal disability, and do you have a disability plan from your work? If you think that you may not be able to work sometime down the road, I would definitely apply for federal disability now. It's takes quite a long time to go through the process, and most people won't get it until their second or third appeal. If you have any questions about this, feel free to PM me. The hardest part about working for me was that I never knew on any given day how I would feel - and I had to quit work about 2 1/2 years ago.

If there's anyone else higher in the food chain that you could talk to instead of this woman, you might want to try that, too. Good luck!

We have 6 people so far in Tucson that are getting together in January. I know there are several people in Phoenix, too, that are on the forum. If those people in Phoenix would like to join in, that would be great. Perhaps we could even meet halfway...If anyone else is interested, please PM me.

What a good reminder to get my VitD checked again. It's kind of all over the place, but it's never been below 20.

I have some compression stockings I got through a doctor's prescription, but unfortunately they have never seemed to help me out much. They're waist high, and I can't get them on without someone helping me. I may try knee high to see if they'll make a difference. Since I live in Tucson, the waist highs are pretty warm most of the year!

This sounds a little like a possible stroke? Please get yourself tested, and good luck.

I started having seizures about three months ago, and they've gotten worse and more frequent the last month or so. Mine are tonic-clonic, which means they're quite violent and I'm throwing my arms, legs, and head around, then I usually pass out. I went up to Mayo Scottsdale a week ago to talk to my doctor about them, and they repeated my autonomic tests since it had been a year since my last testing. My BP is now at a lower level both at rest and when I stand up or stand too long. TTT: Base: 110/75....Up 1 minute: 67/48. I seized on the tilt table, and had to stop the test after 2 1/2 minutes. Ugh.

My doctor says the seizures are from my BP, and I am waiting to talk to him on Monday for the test results and a new med they'd like me to try to get my BP up since I don't tolerate either Midodrine or Florinef. I cannot drive now, and am very worried what will happen if I have a fit when my husband isn't around. Most of our home has hardwood or tile floors. No fun!

I also have this problem. I feel much worse if I go too long without eating, and my blood tests usually show that I'm almost hypoglycemic. I certainly feel that way...dizzy, nauseous, light-headed, and a nasty headache. I eat four times a day, but break up my daily calorie allotment into those four times, so I don't overeat. Usually that's not a problem, however, because as the day goes on, I lose my appetite.

Maiysa, I also get my headaches in my occipital region (as we've discussed.) Has anyone had experience with occipital nerve blocks? My doctor would like me to try them.

Alyssa,

I'm sorry you're feeling so poorly. You are fainting an incredible amount of times...what would happen if you went to your bedroom on your hands and knees? Aren't your doctors extremely concerned about you falling and hurting your head or injuring yourself? What are you taking for your faints? It seems to me that it would be very dangerous to be fainting constantly like that. I pass out/have seizures about 4 times a week, and my doctor at Mayo Scottsdale is very concerned about it. I hope your doctor is seeing how dangerous this could be to you. I hope you're not alone when you're like this, and not driving! Please take care. I've had to give up driving. Good thing you have a service dog.

(HUGS)

What about those with low BP? I was diagnosed with CHF, AF, and cardiomyopathy along with bradycardia about 6 years ago at Mayo Scottsdale. It was about 2 years later, when my heart symptoms were under control that I was diagnosed with dysautonomia. My low BP, which has now gotten lower, is not only causing fainting spells, but violent seizures as well. Mayo says that it is because of the extremely low BP, and I just finished more autonomic testing three days ago. I'll get the results on Monday, along with a new med to try to raise my BP. It's a new one, not Florinef or Midodrine, which I couldn't tolerate. I'll let you know about it when I've tried it (sorry, Issie, I stole your line there.)

Lieze,

I found your post about anorexia very interesting. I went through treatment for it about 20 years ago, and I know I still deal with it. Do you have any idea how to find more information on this link between anorexics and the genes for serotonin receptors?

Dani, love the new pix with your baby!

I take Benadryl every day, and I seem to be fine with it. Like others, I use it for allergies and for making me a little sleepy before bed to help me sleep. I've had no side effects (that I know of!) and only take 25-50 mg a day. Everyone is so different though. It's really an individual thing. Good luck!

Hi RichGotsPots,

I see that you're new to the forum. Welcome, and keep posting when you need information, support, or a place to vent. It's good to see you on and posting. You're safe here, and there's always someone who can relate to your symptoms and feelings....

Jana

How narrow does your pulse pressure get, and does your BP tend to be high or low? I also have a narrow pulse pressure, around 10-12 points, but this is with a low BP - ie: 75/64.

I just got back from Mayo Scottsdale because I've been having seizures due to my very low BP. They ran all of the autonomic tests again, because it had been a year. I've been to both Rochester and Scottsdale, because I like my doctor so much. Since I live in Tucson, when he moved back to AZ from MN, I was very happy. Truly a special doctor who cares and listens. Rochester is good too, but Scottsdale was 80 degrees today. : )

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!