dsdmom

I like mestinon but can only take small doses of drugs so I take the pediatric preparation - it's liquid. That way I can measure out smaller increments than are possible with the pill. Something to think about if you want to start small.

Hi Shoe

I'm so sorry you are not feeling well and that you'll have to be off your drugs. But, wow - amazing! - that a doctor came by your house. That is truly wonderful that you have found such a wonderful provider, even if his time is limited. And just try to keep reminding yoruself that you will figure this out and will be back on the right meds soon.

Hang in there!

I have always greyed out first thing in the morning - as long as I can remember actually. But I have never had any other symptoms and was always extremely active in sports, etc. No problems with tachy. Fast forward 30 years and add a ton of physical and emotional trauma in a couple short months and voila! - dysautonomia. I do wonder about my greying out when I first stood up in the morning but I always assumed that everyone had it!

Out of curiosity - are you on or have you been on antidepressants? I have not experienced what you are describing but have heard this description a bunch for some people as they come off anti-depressants.

I see Peter Novak at UMASS Worcester. If you want details and what I really think, send me a private message.

The other specialist I know of is Roy Freeman @ Beth Israel in Boston. I have not seen him but have just read about other people's experiences. I don't think you see him much - you see his underlings more.

I've having a terrible time coming off prednisone. Dropped from 60 to 40, to 30 to 20 decently. But coudln't drop below 20. It's taken me a year - yes a YEAR - to go to 17.5mg. I drop .5mg at a time and I still get flares...

I know what you mean..I'm actually thinking about getting a remote starter for my car so I can leave the ac on full blast and then turn it on before I have to get in it.

I can understand you wanting your cardiologist's input since you have NCS but I wouldn't wait to hear from your caridologist about this since it's certainly not in his/her realm. At least call your pcp in the meantime.

Congratulations!!!! Out of curiosity - what insurance company do you have?

I've spoken to my neurologist about IVIG but we're waiting on results of some antibody testing before going forward with it. I would be surprised it the insurance company would cover it without test results to back it up. But, if they do, please let us know - because it's somethig that I've been really interested in pursuing!

The antibiotic route is interesting - I've never heard that as a treatment. Who is this doctor?

Ling,

I am so sorry - I feel your pain. I had terrible complications after the birth of my first child and after weeks of awful experiences ended up having to have a hysterectomy. Definitely was not on my list of things that I thought would happen at 30 years old with one child. And all you can do is mourn. And be angry. And scream. And cry. For me,a lot of therapy and talking about it has helped. It does get better but I still have pain there - I love my daughter so very much but had always wanted more than 1 child. The worst is when people tell you "well you can always adopt." Yes, you can, but that's NOT the point!!!! Unfortunatley people don't understand unless they've been through it themselves.

Mine is due to neuropathy. Small fiber neuropathy to be exact. Only diagnosable (is that word) by a biopsy. EMG didn't show anything because it was for larger fibrs.

Not uncommoon at all to have this type of neuropathy in dysautonomia as small fiber neuropathy also refers to autonomic neuropathy. I haven't found anything that helps. Just hope it goes away one day

I also wanted to direct you to dynakids.org - it's a website for kids with dysautonomia. Although it has great info for parents too. And I think there's someone else on here whose son developed this after a growth spurt as well. You may do search on "growth spurt" and see what you find. Hopefully the doc won't have too long a wait. Keep us posted!

Gosh, it's been a while - maybe a year? But the last time I even had a sip of wine I felt terrible. Now i'm just trying to describe what that feeling was...I guess just all of my symptoms were worse - orthostatic issues, tired, achy...

Ditto thankful's post - see the specialist but if you dont' click with him/her, see another... it seems clear your son's cardiologist is not well-versed in this stuff. Personally I would have him get the TTT and whatever tests you can - QSART, valsalvar...the more info the better. Can you think back to when this started? Did it follow some sort of illness? If so, have him tested for AChR antibodies. There's another antibody test out there now too but I dont' have the info on it yet from my neurologist. And from what I've read/heard, those who get it young have a better chance of outgrowing it. So I'm praying that's the case for your son.

But also - please know that many of us have been told it's deconditioning, or anxiety or something that couldn't be further from the truth. Being as active as possible is important for this, so kudos to your son. But fatigue is very much a part of this as well - so don't let the dr tell you otherwise.

Well I'm glad you have an answer! I guess I'm confused though - I thought they couldn't do the ACTH test while you were on prednisone because the results would be skewed. Is that not true?

That sounds terrible! I am so sorry you had to go through that. i don't blame you for wanting the syringes just in case...I would too!

I don't know how much 'scientific' data I can offer but I can offer personal experience. Because we don't know why I'm having such a ridiculously hard time coming off prednisone and previously my acth tests were all normal...meaning my adrenals aren't completely awful.

Anyway I was on a super short taper - like 1 week - started at 60, then 40, 30, 20, etc... well once I got to 20 when I tried to drop lower my body completely freaked out. I did not have your almost dying experience but I felt pretty awful. Turns out I can't even drop by 1 mg - I get too sick. We have to go by .5 mg and it's still ahrd for me. For some reason - and again, we don't have a handle on what is going on - but my doc thinks my adrenals are definitely not up to par - I just can't do it. Right now I'm on 17.5mg and it's taken me 9 months to get here from 20mg. Sounds ridiculous and it is but there's not much I can do about it...

So I dont' ahve anything to offer except sympathy - let me know how it goes.

I don't have any information on this drug but I just wanted to say GOOD FOR YOU for sticking up for yourself to his secretary. I truly don't understand people that work at doctor's offices. They treat everyone like peons who are not worthy of the doctor's time.

Exercise training has been shown to increase blood volume - but I don' tthink it happens immediately - at least nt while you are exercising. Here's a more in depth explanation...

http://www.usaswimming.org/USASWeb/ViewMis...&ItemId=329

I would fall into this category as well - bacterial infection & trauma. Gave birth 11/06 followed by several life threatening complications and surgeries and infections - I was emotionally and physically traumatized. Then 12/06 the breathing issues, panic and tachy started.

Waterbaby

Your post really stuck home with me.First of all, I am glad that you have found a combination of things that helps you. I definitely understand what you're saying about wanting to be 'normal' and not have to take supplements, drugs, etc...sometimes I feel pretty good and think how great it is that I'm 'normal' and then I realize if I didn't take my medicine I would be very much 'abnormal.' And it bums me out. Because it makes me wonder if, in fact, I am any better than I was when I first got ill or if it's just the treatment that's helping. However, like you said, I need to be thankful for what these treatments allow me to do and feel. Thanks for the reminder. Be well.

EM, I'm sorry - I wish I had some magic cure for you but I don't. I guess when I'm going through that I just try to remember a time when I had it before and realize that eventually it will go away....corny, but I often find myself repeating "this too shall pass..."

Be well...

I've got low testosterone too. Everything else seems ok though - but we are going to be supplementing my testosterone soon I think and I am encouraged to hear your results. That's what I'm hoping for!

Have you noticed any difference in ANY of your POTS symptoms since you started the treatment?

One of the side effects of mestinon can be bradycardia. I experienced this for a time when i was weaning myself onto the drug (I'm super sensitive) but it's since gone away. I do believe that it's possible it could slow your heart. Maybe for you that's a good thing - mine was slow already while I was sitting/lying down so I didn't like the feeling at all.

I've had the same thing happen to me - namely, when I try go get back into exercising I get sick. My docs think my body just doesn't have enough reserves, or it's my immune system or soemthing, but basically you may have to go reaaaaaaalllllllly slow to build up. It's extremely frustrating but I find when I take it very slowly and don't push myself I don't get sick. And I just am taking way longer to build up to than I would like but there seems tob esomething about exercising and getting sick for me. It didn't use to be this way!