Just Diagnosed With Dysautonomia

[lynnky]

Hi,

I am new here, and have already learned that I will learn a lot from just browsing some of the posts here.

I was just diagnosed with Dysautonomia after a positive tilt table test. I have been through years of health problems before arriving at this diagnosis. The cardiologist I am seeing believes that there is an underlying autoimmune problem-- he was not the first to suggest this with me, so I am still trying to get to the bottom of understanding it all. He did put me on Midodrine to start with treatments... I am not liking the side effects at all thus far. I wondered if anyone here would be able to share if Midodrine has been helpful for them? My pulse rate hovers around 100 while at rest without the Midodrine. During the tilt table test, after they gave me nitroglycerin, my pulse rate went from 155 to 80, and my BP went down to 64/32. My BP has been high at home since starting the Midodrine, and I am not feeling well at all. Normally, I pass out in high adrenaline situations, and have lots of dizziness/near syncope when standing for too long or when standing too quickly.

In my search for the autoimmune factor in all this... please forgive the length of this post, but I would like to just give a brief background of my health issues here to see if there are any others out there who have been through similar problems-- possibly to hep shed some light on a direction I should go...

I am now 36. When I was a kid, I had something called Henoch?Sch?nlein purpura, which is a systemic vasculitis, which has something to do with the immune system. The doctors told my parents that it was like an allergic reaction to something, but they couldn't figure out what. I think my immune system never knows what to attack. An immunologist told me a couple of years ago that I have a T-cell deficiency, that I have CMV negative blood, and I had a low-positive ANA. I had been through two years of fighting a (vaginal) yeast infection after a long throat infection they couldn't figure out, when I ended up seeing him.

I have a lot of floaters in my vision, and have what they have called optical migraines. When that happens, I have a zig-zag flashing on the outer portion of my vision that moves its way inward until I lose vision for a while. I also have regular migraines.

I have joint pain and extreme muscle fatigue-- which led to the fibromyalgia diagnosis last year. But this is something my cardiologist is not completely sold on with me. I also have neuroma in my foot and Raynaud's, which is a circulation problem. I am on Neurontin for nerve pain and twitching. I had an EMG done and the neurologist didn't find any abnormalities that would cause the twitches or nerve pain. When I have them really bad, the twitches are all over my body-- 24 hours a day, and you can see them.

I have been emailing with a cousin who has had some similar symptoms, and feels that there is a hereditary connection with the autoimmune issue. I do have a positive ANA, but sed rate is fine. I just have to get to the bottom of this and would appreciate anything anyone might have to share.

Thank you so much in advance. I am sure I will learn a lot here.

Lynn

[iheartcats]

Hello and welcome!

I have positive ANA tests on and off, and no one knows why. I'm seeing another Rheumotologist next week, but we'll see if they can pinpoint anything.

I have POTS and Midodrine does help. I am also on a Beta Blocker with Midodrine which helps even more in combination! It's called Propranonol and I'm doing a lot better on the combo. You can search it - a lot of people use it here. Mestinon helps me, too, in low doses. High doses cause other issues. It's another one worth reading about.

I used to have ocular migraines but they went away. The first one freaked me out (the zig zags). They were very rare. I had normal migraines more. But now (hopefully) they are extremely rare, too. I've not had a migraine in a while (one or two year) and no ocular ones. I do get an occasional floater.

My former Rheumotologist before I moved said I do not have Fibro. I have muscle/joint pains (maybe POTS?) but it's not Fibro. I am going to see what the new Rheumotologist thinks, if anything, about my aches and pains.

They were concerned about Lupus as some of the symptoms are similar with it, but I have not been diagnosed. I was told to watch for additional symptoms.

I'm sorry you are dealing with this. It is not pleasant, but hopefully you'll find some help, answers, and be able to at least vent on the boards!

[Mrs. Burschman]

Hi Lynn! We're glad you've joined our happy little community, though sad you had the need.

I think I might have underlying autoimmune issues too, given that along with POTS I have been diagnosed with interstitial cystitis and ulcerative colitis, both of which are considered (at least by some) to have autoimmune origins. I have migraines with auras, too, though I just get blurry vision.

I just wanted to say welcome, and if you learn more about links between your issues, please do share!

Amy

[lynnky]

Thank you for your posts, and for the welcome.

I am not feeling so well on the Midodrine. Does it take some adjusting? I've been taking it for 5 days now, three times a day. It's really making my BP fluctuate it seems, too.

I am at a loss as to what to do about the autoimmune issue. Should I see another immunologist or try an endocrinologist? I am just not feeling well, and am really frustrated right now. Just so tired of feeling bad, and the med. is making me feel worse, instead of better.

Thanks again. I will be sure to share anything I learn.

Lynn

[Mrs. Burschman]

Lynn,

I don't know which specialist would be best to see. I haven't seen anyone about any possible autoimmune links.

Amy

[iheartcats]

Thank you for your posts, and for the welcome.

I am not feeling so well on the Midodrine. Does it take some adjusting? I've been taking it for 5 days now, three times a day. It's really making my BP fluctuate it seems, too.

I am at a loss as to what to do about the autoimmune issue. Should I see another immunologist or try an endocrinologist? I am just not feeling well, and am really frustrated right now. Just so tired of feeling bad, and the med. is making me feel worse, instead of better.

Thanks again. I will be sure to share anything I learn.

Lynn

I'm seeing a Rheumotologist this week about Autoimmune issues. I'll post on how that goes. I've seen an Endo who put me on Midodrine, but I didn't get a full benefit from it until I also took a Beta Blocker.

Who's the primary person treating your POTS to start with? Can they suggest who to see next?

I think my Midodrine was helpful a little bit on its own after some adjustment (a few weeks of getting the right dosage). Good luck!

[tinkerbella]

Just wanted to say hello and give a warm welcome also. I couldn't take midrione as it made me lose my memory badly. I had to take it at early evening and at night time. I have a positive ANA and they think something else is going on with me also autoimmune wise. They thought I had a CMV viris, but couldn't find it. I have the battle with yeast and have way before the pots dx. Then like 25 years ago I went to a holistic doc and did the yeast connecton with my little daughter at the time. He said we had an yeast overgrowth in our body and we took this terrible med and eat terrible tasting food. Everyone made fun of me for doing this to my child back then. she was having ADHD type problems and finally had to stop it all due to all the pressure from people around me.

Today you could do it, but back then it was not the norm... I was ahead of my time. LOL!!!

I should cut out all sugars and carbs..

I know you will like it here and if you need a fiend I'm usually available and love to chat by email.

This is the most wonderful forum I've ever found!!!!!

Hope you feel better soon and find answers to all your questions.

Bellamia~