bamagirl

Does anyone else seem to have flares with this crap? Mine include burning feet, burning tongue, severe vertigo, anxiety and feeling of sensory overload, joint pain, tachycardia then bradycardia, blurred vision, major fatigue. Seems to happen all at once and then I'm bedridden until it passes. It lasts about 2 months. The worst part is the feeling that my nervous system is about to explode. I take Vistaril and it helps some. Anyone else go through this and if so what helps? Sending hugs to everyone!

I have felt more terrible lately and I keep getting these adrenaline surges that cause my heart rate to go from 52 to 160 for a few seconds, then back down to normal. This happened 4 times in a row last night with a few pvc's before it happened. When it isn't happening my bp is 95/60 and my hr is 52. I feel terrible!!! If I stand, my bp goes up and my heart rate goes up just a little. I really think there are other things causing this. Anyone else have these episodes? I can't take a bblocker because my hr & bp is so low in between surges.

During these adrenaline surges, I get pre-spell symptoms. First, I get very flushed and a sunburn feeling. Then I get a very tired sleepy feeling, then my vision starts to get very sensitive to light and I get overstimulated and everything makes me jump, like the phone ringing or someone sneezing. Then I try to sleep and I can't. My mind races and it literally feels like I took speed or something. Next I start getting lots of pvc's and my muscles get weak and tired. Finally, I get a full feeling either in my stomach or neck and then BOOM!! My heart races like crazy!! It goes to about 150-180 for a minute or two and then sometimes it will go down for a minute and then it goes up again. During that time, I can't move and my hands go numb. Afterwards, my whole body trembles and my teeth chatter but I am not cold. My blood pressure goes up a little during these spells but not much. After these spells, I am wrecked for about 3 or 4 months and bedridden. During those times in bed I will have more little adrenaline episodes kind of like the big one but not as severe. These little spells may happens 3 times a day, once a day every day or 3 times a week. I don't know if I will ever stop having these horrible spells. Does anyone else have spells like this. If so, what helps?

Have you ever had a glucose tolerance test?

No, but I'm going to ask for one at the doc today.Thank you-

Sunfish,

You are an inspiration to me and I'm sure-many others. I truly believe with your attitude that you WILL get better in some time. I will read your story and send out a prayer to you every night. Take care and I hope you have a good day.

For those diagnosed with progressive dysautonomia or nerve damage, how and what tests determined that? And if so, is it slowly progressive or fairly quick? What is the absolute worst case scenario? I ask because I have dysautonomia with small fiber neuropathy. I have nerve damage in my feet. I don't faint, and all of my autonomic reflex tests are normal except for no sweating on my feet. My main problem is adrenaline surges over and over, migraines(regular and newly ocular), and very low bp and feeling "drunk" 24 hours a day. I wonder since I have nerve damage in my feet that my dysautonomia is progressive. Any information helps. Thanks!!!

Got it. Good luck with your tests and let us know how it goes.

What did the nerve biopsy reveal?

How were you diagnosed? What tests were done and what results gave you a true diagnosis? I am wondering if that is what I have, but I don't know how they test exactly. How do the docs know if our autonomic problems will progress and deteriorate with time?

The only one I know of in OH is Dr. Blair Grubb. He is an Electrophysiologist (heart rhythm doc). I hope this helps.

How many of you have the ocular migraines? I have had regular migraines for 17 years and since June of this year I am having ocular migraines. They are increasing from once a month to twice a week. I have had an MRI and my eyes checked, all normal. This is keeping my housebound more than usual. For those that do, what helps?

Hello all,

Does anyone else get an aura before a bad pots hole? Mine are like this-

1. get very tired

2. get a cool/burning sensation all over

3. vision very drunk/sensitive

4. startle easily

5. left arm and hand gets 'pins and needles'

6. can't sleep, feel very hyper and hear things in the night that are not there, like people talking, water running.

7. severe nausea

8. migraines

9. then I get the big surge, like i'll be sitting or lying down and then all of the sudden boom, boom, boom,

my heart rate goes up to 150-175 for a minute, then it will go up again.

This will go on day after day for about two months and I am bedridden. Does anyone else get this, especially the supine tachy spells because I want to push my pots doc that something else could be causing this.

Thanks all-

I don't have a-fib, but my dad just had surgery for it this past fall. For a-fib, they don't ablate the sinus node but rather the atrial node and/or electrical pathways. My dad had a mini-maze done which was a bit more invasive than ablation. He chose it after researching the two options. They thought my dad's a-fib was mild and anticipated a two-hour surgery. He was in the OR for 10 hours - they found so many incorrect electrical pathways through the heart. I haven't personally seen any research on atrial ablation in dysautonomic patients, but sinus ablation has been found to make POTS worse.

They're two very different procedures though on two different parts of the heart - if I understand and remember correctly!

WOW! That is a long procedure!!How is your dad's a-fibs now?

Does anyone else have this? I have always had sinus tachy, but over the past few months I have had PVC's and PAC's and just recently a-fib. I was wondering if anyone else had the same thing and if your ep doc recommended ablation for the arrythmias. Thanks for the input.

Yes, girl- I have all that and about a million more symptoms that come and go. You will find most of us have those POTS "holes" that we go in and out of all the time. Hang in there and know you are not alone. I wish you a better day tomorrow.

Amber

No, beta-blockers are not ok for me b/c my bp is too low. The heart racing I can handle, it's the skipping and out of rhythm that scares me. Not to be morbid, but I know some people can die sporadically from heart rhythm problems. Just wondering if anyone has had an ablation to take care of the skips and extra beats-not for the tachycarida.

I have been having a LOT of heart skips and extra beats over the last few months. EP doc really doesn't seem to think it's serious when he looks at my heart monitor results. However, over the last two weeks, every time I get my heart rate up my heart flutters, skips and such and it really feels like I'm going to pass out. It literally feels like it gets out of rhythm!! It even has done it the past two days when I am at rest. Does anyone else have this problem and what helps? My EP doc says the next time I complain about it I am getting an EP study done! Any advice will help.

I am up for renewal next month for my SS disability and I was wondering how difficult it is to get renewed again. I am scared they will deny me only after a year.

bamagirl

I had this as one of my first POTS syptoms. I would would wake up with my heart rate going about 150 with me lying there doing nothing. Also, I started taking my bp as soon as I woke up and it was high!!! Normally, my bp is really low. Try taking your bp and I bet it is on the high side. I personally think it is hormones because specific hormones spike early in the morning, or it can be that the little surge from our autonomic nervous system that makes us wake from a sleep state is cranked up to 1000. Nothing really helped me except for time. Mine doesn't do it anymore. Maybe you can take a beta blocker first thing in the morning and see if that helps. I too, had a monitor that recorded all of this and the doc wasn't concerned. Please know that it will get better in time and it isn't serious. You are not alone!!!

Take care,

Bamagirl

How many of you guys have a positive ANA? This was the only test for years that came up positive in my blood work prior to my autonomic symptoms. Just curious...

Anyone feel like you are walking around in a a daze? I wake up every morning like I am coming out of sedation and walk around all day in a fog or feeling drunk. Just wanted to know if anyone else has this and if so, what helps clear the mind.

Thanks,

Bama

Does anyone get that creepy feeling like you are about to have a terrible surge, then fall asleep instead? I am having these feelings more and more and falling asleep afterwards with a migraine. Anyway, what helps with those creepy feelings? It's almost like an anxiety attack but I am not anxious. I really need help.

Does anyone get really sleepy and tired a few days before a bad autonomic storm? I noticed that I sleep on and off all day long for a couple of days and get very sensitive to noise before a storm. Also, I am getting these storms about once a week now, more often than ever. How often do you guys get these bad storms?

Just wondering if anyone has small fiber neuropathy? I do and apparantly mine has spread to my autonomic nerves. I am so much worse now than ever. I guess this will keep progressing until the end. Anyone else have this and know if it spreads? It's alsmost like I have severe diabetes but I don't. I am more scared now than ever.

Does anyone have small fiber neuropathy? I was recently diagnosed with this and wondering if your dx docs told you it would progress or get better in time?

bamagirl