Dizzy Dame

I rode horses 5 days a week before getting sick. Even as I started to get sick, I still tried to ride...but it was really bad for me. Riding on the back of a horse puts a person in a similar position as if they were standing, and while it uses leg muscles, the use of those muscles doesn't really help to pump blood back to the body. Plus you're being jostled around by the animal and have to concentrate on what your arms and legs are doing at the same time. Not to mention that if you faint you've got a several foot fall and four powerful legs with hooves to contend with.

Honestly, I'd think running would be more beneficial than riding...in other words, it's a bad idea for POTS, but I'm not a doctor.

I get this occasionally, but not as often as I used to. For me, I combat it by laying flat on my back with my legs elevated (I use a wedge you can buy at medical supply stores). Then I take deep, slow breaths in and out and try to concentrate on slowing down my system (not necessarily my heart, but just slowing down my body in general).

Of course, make sure that this feeling is just the POTS and not something more sinister. But from the sound of it, you've already done that.

Good luck

Lauren

That's strange your doctor would prescribe Mestinon for headaches...are you sure you've got the right drug name?

I take mestinon for muscle weakness and for my orthostatic problems (ie. low blood pressure upon standing), incidentally it has helped with my GI problems, but that's an exception, not the norm. One of the most common side effects of mestinon is diarrhea, so many on the forum who've tried it had to stop because it aggrivated their already very sensitive GI tracts.

Mestinon works by preventing the breakdown of acetylcholine. This is the primary catecholamine involved in nerve impulses to muscles (hence its use for treating muscle weakenss). In a recent study they also found that it helped with some kinds of autonomic neuropathy, that's why a few people on the forum who don't experience muscle weakenss have been prescribed it.

I've posted a link to the article on mestinon and orthostatic hypotension below:

http://www.emedicine.com/neuro/topic609.htm

I honestly don't know how or if the drug would help your headaches, that's why I'm curious if you're thinking of a different drug. However, if your doctor thinks you'd benefit from it, I guess it's worth a shot.

Hope that helps,

Lauren

Thanks Maggs! And even if he can't help me, at least I'll get to eat some good BBQ

I get tender breasts as well! Sometimes they swell up too (much to the chagrin of my boyfriend). I can vary from a B to C cup because of this. I've had all the exams/tests and all came back negative. I just attribute it to my funky body.

Good supportive padded bras can really help me. I love the maidenform lightly padded bras. The padding helps keep my breasts "in place" since any bouncing really hurts on days when they're tender.

Thanks Rhonda for keeping us updated! I hope these treatments continue to help

I hope the IVIG works! My doctors have also mentioned this to me if my/our lyme disease hypothesis doesn't work out. I've heard for some it's a miracle cure (I read a paper a few weeks ago about people who were wheelchairbound with MG getting up and running around after treatment). I'll keep my fingers crossed for you!

And please let us know how it goes!

-Lauren

Oh my gosh! I wonder how your liver got that way with no drinking? I really hope they get this figured out for you, POTS is enough!

Hugs,

Lauren

Well, I've made the appointment for the 3rd of October. Hopefully the drive down won't be too awful...although six hours in the car sounds like a nightmare to me.

I'll let everyone know how that appointment goes!

-Lauren

Congratulations!!! It doesn't seem like a silly thing to post at all! We know how huge something "little" like that can be.

Have you thought about trying meds to raise your BP? Sometimes for people who's tachycardia is compensatory for falling BP, drugs like Mestinon or Midodrine are very helpful.

...just doin' a little brainstorming.

-Lauren

Thanks Persephone and AJVDK,

Persephone, I'm glad you're writing again! Hopefully you won't get stuck anymore this term

Part of me just wants to scream "JUST PUT ME ON ANTIBIOTICS!"...it's so frustrating having to wait knowing that if I do have lyme it's continuing to eat away at my ANS while I piddle around looking for answers...but the other part of me knows that patience is so important, and that I can't just start treating myself for a condition that I may not have. I need to KNOW that I have lyme before I start popping pills to kill it

AJVDK, I'm so glad you're improving in antibiotics. I remember how sick you were before starting them. Listening to your story gives me hope that I too could recover!

Hugs to you both,

Lauren

Hi guys,

I went to see my PCP today to discuss the lyme test results and such. In the end we decided that since starting antibiotics is a bit risky, that I'd go see a lyme specialist down in North Carolina to see what he had to say about things.

I think at this point all of my symptoms mean that I have POTS+NMH and some other kind of peripherial neuropathy but no one can figure out what's causing it. Given that I have chronic fevers and have many memories of being bitten by ticks, lyme or some other pathogen seems our only option (as we've pretty much ruled out mito disease and any other disease that could explain all of my symptoms).

I guess I'm a little scared because if this physician in NC can't help me, then I'm kind of out of options. The next step would be to treat this as an autoimmune process...but the treatments for that are invasive and come with thier own set of complications.

So that's what's going on. I'm so glad I have all of you to talk about this with. Otherwise I'd feel so alone in all of this. I'm just praying right now that I get an answer...hopefully it'll be something treatable.

-Lauren

Linda,

I'm so sorry you're having these problems. This is just my opinion, but from the sound of it, a train or bus ride by yourself would be very bad for you. Even people without major health problems have problems sitting in one place for so long...and that kind of travel could send your symptoms over the edge.

Is there any way a volunteer could fly with you? Do you belong to a church? If so, perhaps someone from your congregation coulf fly with you. I think I remember you saying that you have a case worker, perhaps he/she could help brainstorm this with you.

While I understand your doctors concerns about flying, does he honestly expect you to sit on a train or bus for 20 hours?

I really hope you get a good solution to this problem.

Hugs,

Lauren

I'm in college as well (although part-part time). I let my professors know in the beginning of the semester about my health condition and they're usually fine with me propping my feet up, or in some classes, they'll let me sit on the floor propped up against a wall. One of my classes last year was so relaxed that I would sometimes lay on the floor with my feet propped up (the classroom was particularly clean).

Also, wearing waist-high compression hose really helps. I wouldn't be able to sit at all without them because of all the blood pooling.

Karyn,

I agree with you about those kind of people being miserable with themselves. I do feel that most people in this world are good, and are willing to help out their fellow man in a pinch, however there are those "special" few who are selfish and don't seem to know or care about right and wrong who ruin it for the rest of us.

I actually saw that guy in the elevator this morning on my way to a doctors appointment. I was so terrified that I "ran" away (well, walked as fast as my POTSy butt would carry me). I'm terrified I'll run into him again...I'm not sure what to do about that. Hopefully he'll move out of the building or something.

I carry around a small bottle of saline around because my eyes dry out as well. It'd make sense that since tear production is the job of the ANS anyone with ANS damage is suseptable to lessened tear production.

Hey Dionna,

If you go to this address:

http://www.blogger.com/start

There's a button that says something like "start your own blog". If you click that, the program will guide you through all the steps. It's simple and really pain-free. Live Journal is also a good idea, a blog is just slighly different from a live journal page, but both are good.

Feel free to email or PM me if you have any more questions. I'd be happy to help if I can!

-Lauren

Have you thought about starting a blog? It's really easy and fun, and it's a good way to meet people. I started a blog last year and get almost 50 visitors a day now. I've made lost of "e-buddies" that way too.

This is fascinating...the next time someone says "well, dysautonomia is just a hypochondriac's disease, I'll send them these links."

You should write him and tell him about human dysautonomia. He may not know it occurs in humans since it's so underdiagnosed with us.

I have low BP which causes the tachycardia so I take midodrine and mestinon and by raising my BP, my heart slows down on its own. I think for some BB's work, for others, they exaccerbate their symptoms. I'm one from the latter group...When I did the med trial at Vandy, they one beta blocker they tried on me sent my resting blood pressure down to 80/30!!!! When I tried to stand, it bottomed out so we had to stop the trial for that day. It was godawful! But fortunately I now know I do best on meds that vasoconstrict.

I think the only way for you to know how you'll do is to try different meds. I was very, very sick at vanderbilt so my reaction was abnormal. Hopefully if you do have a poor reaction to BB's it'll only be mild.

Good luck!

-Lauren

Thanks Sophia, Calypso and Corina,

I guess "fortunately" I do look handicapped because of the wheelchair...although when I don't use it I definitely look normal...I don't walk in a particularly funny way, and aside for turning white as a sheet, I look like I'm not disabled. Yesterday, however, I was in the wheelchair, so my disability was really obvious.

I've decided that the guy must have some sort of mental instability. I just can't think of any other reason he would threaten me. I really wasn't being confrontational, and although I sounded angry, I didn't raise my voice or anything that could set him off. I just think he has some kind of mood disorder.

The apartment building manager called me a little bit ago and told me that they found out who he was and he'll be issued a warning. If he threatens me again, he'll be evicted. She also apologised that I had to go through that whole ordeal, and told me they're trying to "flush the scum" from my building.

Hopefully I'll never see that man again, but if I do and he's combattive, at least I know that there's something I can do about it.

Hugs to all,

Lauren

There is also an acetylcholine (sp?) sweat test that's more sensitive. This involves placing tiny patches of acetylcholine on parts of your skin. The acetylcholine, in a normal person, will cause you to sweat, but if you have nerve damage, you won't respond. Electrodes measure the nervous system's response to the acetylcholine.

I have a very difficult time sweating at all, that's one of the reasons heat is my worst enemy. Instead of cooling myself off by sweating like a normal person, my body just sits there overheating until I pass out.

Good luck!

Shoot! I should have taken a photo of his car illegally parked in that spot! Oh, well. Best not to think about it now...

Thanks all for your support and warmth! People are becoming more violent as time goes on. I can't imagine what was in that man's head when he threatened me. He must have felt so big and strong threatening a disabled girl in a wheelchair!

But I guess there was a lesson for me in that expereince as well, I'm not strong enough to defend myself if someone attacks me, so I best be on the defensive at all times. I shouldn't have confronted him, even if his reaction was unwarranted and outrageous. Next time, I'll just call the police and let them sort it out.

Hugs,

Lauren

Welcome! It sounds like your on the right track by trying different meds. Good luck with the midodrine, it made a huge difference for me so hopefully it'll help you as well!

-Lauren

Hi all,

This afternoon when I came home from the grocery store, I found that every last handicapped space was taken. The only available parking was quite far away from the building and it's hot out today so I knew I was in trouble. That's when I spotted a man and a young woman walking away from their car that they'd just parked in a handicapped spot. I noticed he didn't have a placard so I rolled down my window and asked him if he would move his car, since he wasn't disabled and I needed the spot. He answered that he was just running in for a second and would be back out very shortly. I told him that was fine and I'd wait for him and take his spot when he returned.

20 minutes passed and he finally came back out to move his car. At this point I was seething for having to wait so long for a parking spot, so I rolled down my window and asked him (in an angry tone) what took him so long, and that I've been waiting for the spot for 20 minutes.

"f*** you b***" he responded and continued to curse at me violently as my boyfriend pointed out that I was in a wheelchair and that we really needed the parking. Then he treatened to "push me out of my f***ing wheelchair"! He got in his car and drove away.

I called the police and told them what happened but they said there was nothing they could do. In the meantime, my heart's still racing because of the event. I've never been talked to like that before...and he really was acting like any minute he was going to come over to my car and hurt me. It was terrifying.

I can't belive that someone would act that way, especially because he was very much in the wrong, and he should have been apologetic...not agressive. I wish there was something that could be done, but I don't think there is. I guess if I see his car in handicapped again, I'll just call the towing company rather than being nice and waiting for him to move.

Thanks for letting me vent.

-Lauren