potsgirl

They can be from a migraine, but I would get yourself into a urgent care facility, call your doctor, or go to the ER just to be safe!

They can be from a migraine, but I would get yourself into a urgent care facility, call your doctor, or go to the ER just to be safe!

Endure & other Aussies, Americans, etc:

Just a note to let you know that there are many of us who are extremely drug sensitive and can't take many drugs without nasty side effects. It seems as if a lot of people on this forum, when they're trying a new drug, have to start out at a very small dose, and go up very slowly.

Hope that helps someone out there...

Cheers,

Jana

Tearose~

I thought Midodrine was supposed to bring your BP up?? I have OI and I've tried it several times, but it hasn't worked for me in bringing my BP up...

Cheers!

I just had an EMG a couple of weeks ago to rule out large fiber neuropathy. My doctor is almost positive that I have small fiber neuropathy, and they will be finishing the tests for that next week. I have extreme pain, throbbing, numbness, etc, in my hands and feet that have become progressively worse. I would say 'yes' to the EMG because it eliminates a lot of diseases that can be related to large fiber neuropathy.

Good luck. Let us know how it went...

Hi Chrissy,

Sorry I went overboard on your rant. Your message went flying by me as I got all indignant. I do think we need to work hard at not excluding men, and you did have a really rough time with your old boyfriend. But as many others have written here, it sounds like he wasn't mature enough for a solid relationship, anyway. It doesn't take the pain away, but I'd bet there's a really great guy out there for you that will be full of understanding and support. When you find him, let us know!

Cheers!

I have to agree with Lieze. A lot of us have anxiety-related issues that affect our bodies in strange ways. I always am hunching my shoulders and don't notice it until my boyfriend comes over, puts his hands on my shoulders, and gently pushes them down. I tend to get headaches in the back of my head, too. Like Lieze, I hope you're not offended, a lot of us deal with anxiety issues here. Are you on an anti-anxiety med? I'm on Paxil/Klonopin, and I know Cymbalta is supposed to help with POTS symptoms, too. I'm not diagnosing you, but you may want to check it out.

Good luck, and be well.

I must say that I'm opposed to this poll because there are plenty of men who get dysautonomia, too, and have the same problems that women do. I don't think we can confine this to one sex. Both sexes suffer from relationship problems. Maybe make the poll gender specific to see if there's a difference between them - of course we don't have as many men as women, as POTS usually tends to hit women more frequently and women are also more prone to join support groups.

V-8 Juice has tons of salt, and so do a lot of soups. I know you try to stay away from processed foods, but you may need to eat them once in a while to help up your salt intake. Pretzels are another good source of salt. You can always search the Internet for "salty foods", too. Popcorn is good with a lot of salt, too. Thankful has some great ideas with G or G2, too. I drink Camelbak, and really like the taste. Remember, you also need to drink tons o' water, too.

Really. What happened to Earth Mother and Rene and BellaMia, Tachy Phleming and the list goes on....I do know that Bella is having a tough time, and so is Rene. My thoughts go out to them all, especially those who are really down right now.

Hi Sarah~

I don't have any big medical answers for you, but I had the same problem and ended up going on some sleep medication to help me sleep. I take Trazodone because the usual sleep aids don't work for me. I also started out with melatonin and other herbal sources, but they did me no good. You may want to talk to your doctor about a prescription you can take when you're having a rough night. Could it possibly relate somehow to anxiety? I know I have to take Paxil to help me with both my sleep, anxiety, and it helps with my POTS symptoms.

Good luck & cheers!

Jana

Hi All, and thanks in advance to those who respond:

Yesterday morning after I got out of the shower and was going through my post-shower routine, all of a sudden I got hit with a blinding headache between my eyes, I broke out in a sweat and chills, got clammy, started shaking, got nauseous, and then my vision went completely black. I tried to feel my way over to the bed to lay down, but passed out before I got there. My boyfriend came in and once I came out of my faint, we took my BP on the floor, which was 87/72 and pulse 64.

I laid on the floor for a while, and then we got me onto the bed. Still not feeling well, we took my BP standing up, and all of the same symptoms came back again. We got a reading of 164/117 (crazy for me! I'm usually about 75-80/62 or so with a HR of 125-120 I've never had a BP that high). My vision went black again, and the next reading didn't catch, and the second one was 57/....By that time I was ready to faint again, so we got me back on the bed where I rested for awhile and slowly sat up.

I hate the ER, but this time I went. The episodes really scared me. What would happen if that occurred when I was home alone on the stairs or driving? The doc at the ER said that it was likely related to my OI and that my BP got way too low (but didn't know why - natch). I also tested positive for anemia, but my numbers were only slightly lower than norm. Last blood work, 4 months ago, showed me as being hypoglycemic but again, just slightly.

Anyone one else have something like this happen? How do you handle driving and staying at home alone? It's never bothered me to be home alone before. I also started Lyrica 2 weeks ago, and will be asking my pain doc if that could have had anything to do with this. Suggestions or information, anyone??

Thank you & cheers!

Jana

Yay! That's great news. May she continue to improve. Thanks for sharing!

I've always gotten the flu shot, and never had any problems other than a sore arm for a couple of days. Ask you doctor, and see what he/she says is right for you.

I'm really sorry you're having to deal with this. I live in the US, and when I travel in the US, I also buy insurance for my flights in case I can't make it the day I have scheduled to travel. It works great, and they've always given me my money back. Other than the medication, it sounds to me like they would have no basis to deny you travel insurance because you have no identified diagnosis! You have no "particular medical condition", but you've been given meds for certain symptoms. See if your doctor will write a letter to this insurance company stating the facts. Many of us (I think) don't have a lot of medical back-up if something were to happen to us if we were out of our home states, for instance. Sometimes you just have to go with the greater need!

Cheers,

Jana

Hi Ken~

No, I think the Rochester Clinic is fine. Remember, they have hotels and a 'subway' system underneath the ground from 2-3 hotels that go to the main Mayo Building, where your initial appointment will probably be. When I was there in March, it was a terrific help - it was so cold outside. Those hotels are more expensive than what you'd pay if you stay further away and drive in, though. The hotels were the Kahler Inn & Suites and the Marriott. The Marriott gets cheaper the longer you stay. You can always book a week and then cancel if you don't need to be there that long. I stayed about 10 days, since we had to stay over the weekend. Parking is free, and inside. Breakfast is also free.

If you're going with someone, and I hope you are, I would recommend either hotel, although if money isn't an object, I'd go to the Marriott. Very nice.

Please PM me if you'd like more information.

Cheers,

Jana

If I had a dollar for every search I've done...Thanks for the information! I'll be taping it tonight.

I have found that my birth control pills seem to help control some of my hormonal swings. I am taking Reclipsen now, which is a monophasic birth control pill, which is what would probably be best for you. The monophasic pills means that they have the same amount of both estrogen and progestin, and my doctor told me they were a very low dose pill. She also told me that it might help to take 2-3 packs in a row without having a period, and that has helped me, too.

Hope this helps!

nowwhat!

I'm having the same problems with small fiber neuropathy that started out of the blue 6 months ago and is in my feet and hands. If you want to, we could PM or email. It would be nice to have someone to relate to.

Cheers,

Jana

Sophia~

My mom wears one of this 'life alerts' around her neck that is locally based. It makes me feel much better since she is in Iowa and I'm here in Arizona. Best to you all!

I think that Medicare will provide some funding for home care, but don't quote me. The best bet is to call Medicare to find out what that individual's plan is, and see what they say and would your friend would need to do to put it into place. Going directly to the source is your best option. I call Medicare once in a while and they're been very helpful on what's covered and what isn't. Your friend could also go online to Medicare.gov with his mother's Medicare number and look up coverage options. She may need to set up an account first.

Hope this helps a little. You've probably already done it by now...

I'm sending positive thoughts to you, your friend, and your friend's mother.

Hi Jonathan~

You have to be responsible for your own health. This is not your partner's decision, but YOURS. I know several people who have gotten a script from their doctors for a wheelchair to be used when they just can't manage on their own, during flare-ups or just for everyday needs. You need to stay as active as possible, but when you need a wheelchair, it'll be there for you. Better than fainting in the middle of shopping.

Take care,

Jana

My doctor prescribed one for me, and I got it at no expense. It's for those times when I'm in a really bad phase and can't get outside the house without one. So, it's definitely worth asking your doctor about and seeing if you can get a script. I had mine in two days! I hardly use it, but it's there when I really need it.

Cheers,

Jana

Caterpilly~

It almost sounds like you might have mono or something like that. Have you been checked?

I agree with Jan. I always get a copy of my blood test results, and usually there are a couple numbers that are flagged as 'abnormal'. Most of mine are just a little off, and my doctor says they're not off enough to worry about. Your blood results can vary on any given day or time of day.

It worries me that your PCP can't give you feedback on this. They should be familiar with blood testing. Where did you have the blood work done - who ordered it for you? They should be able to give you an answer. Either way, I'd follow up. It'll probably just take a phone call.

Let us know what you find out, and good luck.