potsgirl

We have several people in the Tucson/Phoenix area, and we will be meeting on Jan 6th. I'm very excited about this! It appears that there will be around 6-8 of us meeting at a local deli.

Cfmartin~ I hope you find some others in your area that you can get to know better. Good luck!

I was diagnosed with autonomic neuropathy at the same Mayo Clinic you're at. You sound like you're in the right place! I saw Dr. Goodman (neurologist) there, who is now back in Scottsdale (good news for me, wish you could meet with him - he's a gem), but have also heard good things about the subspecialty autonomic team in MN. They're located in the main campus of the clinic. They had me do blood work, 24-hour urine, tilt table, Qsart (sweat test in something resembling a tent), and an echocardiogram, since I've had heart problems before.

I also have very low BP, and a large leap in my HR when I stand, so by Mayo Clinic's definition I did not have POTS, but another form of dysautonomia. I was also treated earlier at Mayo for dilated cardiomyopathy and congestive heart failure, bradycardia, and ended up with a pacemaker back in 2007. About 6 months ago I was diagnosed with small fiber neuropathy, and about 2 months ago I started having seizures when I stood up - then I pass out. Sounds like we have some things in common.

In my opinion, you're at a good place to be treated, and I think you'll find a lot of empathetic doctors and kindness there. You'll go through a slew of tests, and then your main doctor will go over everything with you, and will spend a good amount of time doing this. You may want to write your questions down so you don't forget them, and you also may want your husband there with you, especially when the doctor is going through your diagnosis.

Good luck to you, and please let us know how things are going!

Jana

No....what facility does he work at?

I have also experienced bowel incontinence. That's extremely embarrassing, because of the odor. I know that there are others on the Forum who also deal with urinary and bowel incontinence, too. Thankfully mine is not constant, but I never know when it's going to happen.

I was diagnosed at Mayo in Rochester, and it's a great place. The doctors there don't diagnosis 'POTS' if you have a major blood pressure drop when you stand up. Normally, you would have no change or about a 10-15 point change in BP when standing with their definition of POTS. POTS in many places is defined as a heart rate that shoots up 30+ points when you stand. I have autonomic neuropathy and small fiber neuropathy along with a couple other issues, and my BP drops about 50+ points when I stand, and my HR goes up about 60 points or so when I stand. There are many different kinds of dysautonomia.

I hope you get to Mayo and get some good answers. I was pretty close to Rochester, too. My home town is in Ames, Iowa, so when I visit my mom I used to drive up there. Now I see Dr. Goodman at the Mayo Clinic in Scottsdale, Arizona. He's terrific. Good luck, and please keep us posted!

Jana

Hi Lette,

Just wondering if you knew when your interview might be posted? I'm excited to hear it! Please let us know....Ok, Duh. I just found it. Thanks!

Jana

I also have this problem sometimes, and if you have the same thing I do, it's called 'nystagmus.' This can occur when the area of the brain that controls eye movements is not functioning properly (probably due to lack of blood flow), an accident involving injury to the head, lack of vitamin B12, an inner ear problem, as yogini suggested, along with other issues. It makes your eyes go horizontally side-to-side very quickly, and from what I've read, it can also happen vertically. There's more information available if you type in 'nystagmus' and then look under 'NIH,' the National Institute of Health. Hope this helps!

Omega, I think that strabismus is where your eyes cross? I would guess that others here also suffer from this condition...

I also get this sometimes, and there's an 'official' medical term for it....when I remember, I'll be back and post it.

Welcome to the forum, RunningWild. As Ginger wrote, there is a lot of information and support to be found here. Many of us have gone for years undiagnosed, and sometimes you have to go to a doctor who specializes in dysautonomia to really find out what's going on with you. I was diagnosed at the Mayo Clinic (both Rochester, MN and Scottsdale, AZ have doctors specializing in POTS and other autonomic nervous system issues there.) There's also Cleveland Clinic, and various others places - there are doctors listed under a link on the Home Page.

Please read through the info that's available on the site, and know that there's usually someone on here who can relate to what you're going through. Again, welcome, and we hope to see you posting and getting some of the things you need here.

Cheers,

Jana

I was adopted and really don't know much of my biological family's medical history. It can be rather frustrating not to know what ailments run in my bio-family. I think there needs to be a registry for adoptees to be able to find out their pertinent medical histories...

Thanks for the post with links to the studies. Very interesting, and I think it relates to many on the forum.

Numbness, tingling, the inability to feel things with your hands and feet, and PAIN can point to small fiber neuropathy. The most conclusive test for this is to have a skin biopsy, along with your related symptoms. They 'punch' two tiny holes in your leg, one above your ankle, and one on your outer upper thigh. These get sent to one of the few labs in the US where they read the biopsy material. I can't comment as to what they do overseas, however. Look up small fiber neuropathy under Mayo Clinic or another reputable site for more information. I take Gabapentin for the pain.

Sorry to hear you're having troubles with this after your surgery. Mayo Clinic defines low blood pressure as anything below 90/60, and if you're not symptomatic, it's usually not an issue. Pressures that get down below 80/50 or so becomes more worrisome, but again, it depends on if you're symptomatic...dizzy, fainting, nauseous, etc.

My pressure can get down to mid to high 60s over 55 or so, but then I sometimes faint/seize when I stand up. However, everybody is an individual and you need to talk to your doctor about what pressure he would be concerned with...Perhaps a Holter monitor would see how low your BP goes. I wore one and it got down in the mid-30s, so I ended up with a pacemaker.

Your doctor is really the one to ask about what he considers concerning. Good luck!

How high are the blocks raising your headboard? I have cement blocks under mine, and they're about 4". We also have one under our central post, also 4". We have a king-sized bed, and so far they're working out fine. How big is your bed?

Hmmm. My suggestions would be beans, lentils, and eggs. If you have a Trader Joe's in your area, they make some good bagels, breadsticks and muffins that have a lot of fiber and protein. Kashi makes really good cereals that also have high fiber and protein. I really rely on these items and others that are similar to get enough protein/fiber, but I can also eat beans and eggs. Good luck!

Areas of my feet get purply/black when I shower or take a bath. Not so much my hands...I figured it was blood pooling. I also get this if I stand too long in one place.

Just a suggestion, because I've been there, too: If possible, bring someone along with you to listen to what the doctor says. I usually take in a list of questions and my husband/friend to make sure I'm hearing things correctly because I can get so worked up over a doctor's (especially a new one) appointment. Anaphylaxing also has some good ideas. You don't have to do anything you don't want to do, and try to keep in the present.

Please let us know how it goes~

Jana

I'm glad to hear that it's normal to feel them in your neck and groin area, because I've also had this for many years. Usually my left upper neck gland swells more than the right. Anaphylaxing, May I ask where you heard that it's normal? Thanks!

Perhaps you need to give it more time. Also, people don't tend to look into this forum like the main one. I'm guilty of that, myself. I loved it, and am so glad you're using your creative talents. Happy holidays to all!

Rich,

Wikipedia is not usually the best source to cite since anyone can get on it and add information. Do you have any other cite that you're using for you data? Thanks.

I have the waist high stockings, but they're incredibly difficult to get on, especially since I have small fiber neuropathy. I tend to have abdominal blood pooling, so the waist highs are the best for me. I'm not sure that they're doing much good, but my New Year's resolution (among others) is to try to wear them everyday.

I am so glad you posted this topic! Every month or two, I have a couple of episodes like this, where I'm either sleeping or knowing that I need to go to the restroom and thinking I made it in time, but I haven't. Horribly embarrassing and I'm not sure what to do. I've dealt with constipation for many years, and now this....I think I'll pay a visit to my gastro doc about it. I think it has something to do with pelvic floor issues.

I tried a wrist cuff also, but found that it wasn't as accurate as my arm cuff with a digital monitor. I have an A&D Medical blood pressure monitor, UA-767 PC. You put on the cuff right above your elbow, push the start button, and the cuff inflates and shows both your BP and your pulse. It runs on batteries, and I got it at Walgreen's. It is rather pricey, but I've had it for about 4 years, and it still works fine. I tested it against the one at my doctor's office, and it's pretty accurate.

I also take mostly baths, and shower only once or twice a week when I have to wash my hair. It's exhausting! I agree with other here - a shower stool can help out when you need to shower. I try to take quick showers, and I need my husband around while I'm showering in case I pass out.

Todd,

I like it! I'm the same way....extremes either way are no good for me, but I'm especially heat intolerant.

I also get a color 'wash' to cover my creeping greys, and the only problem I have with it is sitting under the dryers. I get very hot and start to feel ill. The same is true when my hair is being blow-dried. It's not quite enough to stop me from coloring every 3 months, though.