bellgirl

I'm currently taking 200mg a couple times a week, after doing research on it. I'm 55, but I'm not old...lol fighting every step of the way!!

I had ear pain (previous surgery), and the next morning I came very close to vomiting, but I wasn't diagnosed at the time, so I think with my wrist bands, maybe the patch and lots of fluids, I'd do better.

LindaJoy, I hope he doesn't have it...that would be terrible, if you were both symptomatic at the same time!! Mine started with a virus, too.

Yes, I believe it is due to blood pooling. If I'm not active enough, I also get this! Tingling happens in my hands, too, especially when I'm trying to lift something heavy, but it also happened when I had my TTT.

Mine used to be dizziness/vertigo, but now it's my vision.

I don't eat a lot of meat, but I've been bitten twice by ticks in the last month. This is getting ridiculous. I saved the last one so they can test it. I was just checked for Lyme disease about 10 months ago. I guess they'll have to do it again. My dysautonomia started with a virus of unknown origin.

That is a low D level according to articles I have read, and my doctor. You should consult your doctor, because I was put on 4,000 I U's for a month with a level of 25, and now I'm on a maintenance of 2,000 I U, and I'm telling you, it has really made a difference, Lauren!! Joy, Kim

If I were you, I would suggest not getting that prescription filled until you talk with another doctor, who knows more about the whole autonomic nervous system. That is a very low heart rate walking around. I've had low heart rates like that with beta blockers before, but not without them, and especially not walking around.

That's hypotension, not saying that hypotension can't accompany POTS, but for me I have hypertension if anything. I'm a strange bird, too; I also started with hypertension in my early 40's, but was actually hypotensive when I was younger . It's trial and error for me and the doctors, but I have to say lately I've been better regularly exercising and taking my supplements as often as my regular meds!

It's almost been a year since my diagnosis and being on meds for me, after 13 years of plummeting health with no diagnosis, so I'm finally improving energy wise. I was deficient in D3, too, so taking care of that problem has made a world of difference for me. My symptoms mimic MS, and it is typical for patients with this to have a deficiency in D3 and B12, so I requested the blood work, and sure enough, I found another issue to help resolve. I'm a fighter, and I don't give up easily. It's a good way to be, when you have this disorder, because it can get the best of you, if you let it

Sounds like you did great! Keep it up unless your doctor tells you differently, because I started on the bike first, and was dizzy and now I'm on the elliptical for 2.5-3 miles, and I'm a lot better after building up to normal heart rate for my age. Every now and then I get some tachycardia still, and some days I just can't go, but I at least go 2 times a week, and walk my dog short distances, too. Just listen to your body. If you get too nauseated or dizzy, just stop, but exercise is good for you, and as long as your doctor is alright with it, it improves blood return, and anything to get those legs working and better muscle tone will decrease the pooling in your extremities!

Well, reading all the replies, I've had neuritis after a virus, where I could hardly sleep, but I have also had the muscle to bone pain you describe, and that was directly related to my deficiency to vitamin D3, so I agree with McBlonde. It's a whole lot better since I've been on increased doses. I would suggest asking your doctor to getting your D3 and B12 checked, too.

This is very much related to the sympathetic nervous system on a high.... I can get very demonstrative at sometimes, when I feel as if I have something to share, and no one is listening. I think it had to do with my medications holding me down for so long; it was as if I wasn't there, and now that I have some of my energy back, and have leveled off, I am more present in the conversation then I used to be, and don't want to be dismissed. We still are the same people, but medications sometimes can change behavior, and then when family gets used to the "slower" you, and you maybe feeling somewhat better, you are more likely to fight to be heard, and sometimes can go overboard, when this happens. I can totally relate to this.... I also have a bit of the Irish and Scottish in me, with names like Bell (see above), Malooly, Conlon, Horgan etc. Not excusing bad behavior by any means, (we all need self control), because we all have the propensity to loose our temper, it's just more magnified in us with our nervous system being all over the map!!

It may help to get medications approved for Dysautonomia, as well. My insurance company denied Provigil, because I don't have MS. It is given for fatigue, and at 8 dollars a pill, vitamin D was a lot better solution for me, since I found out I was deficient in it.

All families have disagreements, but our nervous systems, seem to escalate ours, though, but we all still love one another, and that is what counts over all. Apologies and forgiveness are important...and life goes on.... Try to enjoy your wedding and the planning, because you want fond memories of your love for one another. That's what matters the most. Of course, you want a beautiful dress, wonderful celebration with new husband, friends and family, and plenty of pictures!!

My pharmacist was very familiar with dysautonomia. I have a lot of respect for pharmacists. She made sure that I wasn't taking my atenolol with the bystolic. That would have been double dosing. She was also very "sympathetic", sorry I couldn't resist the pun...lol

It's not Fantasy Island, that's for sure!! "No man is an island" by John Donne 1572-1631....I wonder whether he had POTS?! Can I join the group, too, lol

Oh my...so sorry you are feeling all alone. You don't have to feel this way here. We all understand how it is to feel lifeless, but you are alive, and you now have many friends who can relate to you. Please feel free to share any of your concerns. We are here for you!! This disorder does change you, but you are still the same person inside, just waiting to blossom again. There is always hope here!!

It sounds as if you have way too many concerns all together, and have POTS at the same time. Being a nurse, I can't even begin to imagine going to school for nursing and planning a wedding at the same time and a family feud, too, even when I was "normal"!! You have way too much on your plate. So sorry you are going through this. Does anyone in your family realize that what you need is help, instead of bickering? Does anyone understand your POTS issues? I hope you have a supportive fiance. I'm praying for you, and am sorry you are going through this. Please let us know how this situation turns out. It looks like you are on medication to help you...this should be a happy occasion...please ask for help from someone, you know you can depend on.

You are not alone; I too, have this symptom, and is worse when I am symptomatic. Blurred vision, double vision and unequal pupils at times, too. I was tested for Myasthenia Gravis, but it came back negative. I believe it is the Dysautonomia...sorry I never know when my vision will be bad either, and when both eyes are effected, I can't drive, and only go short distances, so I understand your problem. Wish I had a solution. I think I may go to a neuro-opthamologist. I will talk with my neurologist in September, when I go back to see him.

Mommabear, that's great...Hope it continues. I would suggest to get her vitamin D levels checked, as well. My deficiency caused a lot of fatigue, and the mega dose of 4,000 IU's helped my energy level immensely. I'm now on 2,000. Check with her doctor.

I usually stay away from breads, cakes, cookies, but this week was my husband's birthday and of course, Father's Day, so I ate cake and cookies, and had trouble, so you may be on to something with the gluten free...I had to make several trips to the BR as well...

Thanks for the post...do take vitamin C on occasion. Maybe I need to up my dose...thanks

I also have vitamin D deficiency, as well, and am very thin, and have always thought that I have malabsorption problems. I have to say that increasing to 4,000 IU's for a month helped my energy level...now I'm on the 2,000 IU maintenance. I need to get my blood work done again.

I wear sea band, acupressure wrist bands, too, when I have stomach issues. Avoid acidic drinks, and just eat small meals. Ginger also helps with nausea, too...I take maalox when it's really bad with the gas reducer, simethicone. Hope the burning subsides