IceLizard

Better than I am doing. HR spiked to 132 standing in my office today and I am shaky. I am drinking more water and taking clonidine. I usually can't tolerate stairs at all. Best of luck managing everything! It can be tough to find what your limits are.

Becia, have you tried getting on the cancellation list due to the severity of your problem? Just maybe you can get to see him sooner. Hang in there!

Sorry to hear how poorly you feel. Maybe this will give you hope. It is an article written by Dr. Grubb differentiating epileptic seizures from convulsive syncope. Having seen him myself, I am confident he will be able to give you some answers.

http://www.medsci.org/v06p0296.htm

I am very sorry that you are having to go through all of this. I understand because I was nearly as bad 9 years ago. I was bedridden: any attempt to stand or sometimes even sit caused me to have a jump in heart rate followed by collapse then shaking or convulsions. I felt bad even when lying down and felt like I was slipping away. I am 5'6'', but I lost weight until I was 108 pounds. I had acid reflux and no appetite. Eating made all of the symptoms worse. I lost muscle until my knees were the largest part of my legs.

When in this dire situation I was lucky enough to get in touch with the good people of the National Dysautonomia Research Foundation. They convinced me that to be able to get out of bed I must exercise. So, I started doing muscle strengthening exercises in bed. Then I progressed to getting up and doing 1 squat before lying back down. I would do 1 squat every hour or so (or more frequently if I could) throughout the day. That added up. Eventually I was able to get up and walk around the room. I was really excited when I could make it to the bathroom! Then I tried walking down the hall. I also had to force myself to eat more, yogurt helped. Cymbalta also helped my autonomic functioning.

Now I am doing much better, but I still struggle every day. At least I can usually manage to get out of bed and do about 50-70% of what a normal person could do in a day.

I hope you find a way to better times.

I went to see Dr. Randy Thompson, but he said my case was too complicated and sent me to Dr. Blair Grubb. LOL! (Because my blood pressure became unreadable during the tilt, he said that I did not have "just POTS")

Then Dr. Grubb, to my surprise, starting pulling on my joints and said I had EDS.

Thanks so much for the video!

Hi you all and thank you very much for your input. I have convulsions after I collapse and I recognize that they are due to low blood pressure. (Confirmed by tilt table test). But, I am also having similar convulsions in other situations like I did in response to the lights.

I have decided to make an appointment to see my counselor about this problem. Although I do not think it is "all in my head," if it is an overactive sympathetic nervous system issue it may be able to be managed like anxiety or panic attacks. So I will talk with the counselor about seeing the Psychiatrist to explore whether this can be treated that way. I am running out of doctors I trust.

I have had migraines with all of the symptoms you mentioned. And, yes they were painful and scary. The reason people tell you to see a doctor is because many of the symptoms overlap with more serious problems like stroke, so the doctor needs to rule out the more serious stuff before you can treat them as migraines. The medications that helped me most during a spell are Axert and Phenergan (for the nausea, also puts you to sleep).

I have greatly reduced my number of migraines by going on a migraine trigger-free diet recommended by my neurologist. I avoid caffeine, chocolate, MSG, artifical sweeteners, raw onions, and garlic. Triggers can be different for different people, but caffeine and chocolate are common culprits.

Hello Meme,

Sorry to hear you are dealing with these problems. POTS is defined as a increase in heart rate by 30 bpm or an increase to 120 bpm within 10 minutes of a head-up-tilt. By this definition, and by symptoms like lightheadedness, brain fog, and grey outs, it sounds like you may indeed have POTS. Also, people who have POTS are more likely to have migraines and Raynaud's syndrome. You can have troublesome symptoms without your heart rate being as high as 190 bpm, although it is not an emergency. When your resting heart rate gets that fast it is considered an emergency because you can go into an arrhythmia.

Climbing stairs is one of the activities that can worsen your POTS symptoms, so I would try to limit climbing and be careful. I have passed out after climbing stairs and now avoid them when I can.

DINET has some wonderful reading material on POTS. If you haven't already, try exploring some and see if the symptoms are familar to you.

Best,

IceLizard

Hello everyone,

Just wanted to see what your opinion on this would be. I just went to see my Neurologist about my EEG results. During the test they flashed a strobe light at me and it caused me to go into convulsions. The light was intensely bright and every time it flashed I startled. As the speed of the flashing increased, I could feel my heart rate increase too and I began to get panicky. Then it got to the point where I began to shake and I went into convulsions. It was odd because this is also what happens when I take the tilt table test: heart rate increases, then convulsions, only here it was triggered by the lights.

I will tell you what I think it is: I think it was a really exaggerated startle response caused by a dysfunction of my autonomic nervous system. I have this startle response in daily life as well. Noises or other stimulations will cause me to jump, and if I am feeling especially sensitive, if the stimulations continue I will become tachycardic and go into convulsions. I have noticed that beta blockers really help with this problem, but I can't always take them as often as I feel I need to because my blood pressure drops and I pass out.

Since my brain waves were normal, meaning I am not epileptic, my doctor believes it is a psychiatric disorder. To cure me, he says I must undergo the test again and watch it on video while he explains that my brain waves are normal. Then once I see that I am normal and BELIEVE it, the convulsions will simply disappear. Talk about RIDICULOUS.

I'd like to discuss this problem with a doctor that takes me seriously so that maybe we can find some way to manage this, but I am not sure who to talk to next. Anyone else have a similar problem? What has helped you?

Thanks in advance for any replies!

I just want to warn you to be careful with Clonidine if your son has trouble with depression. I would take it at night to help me sleep, then the next day I would have symptoms of a major depressive episode. It really calmed my nerves and jumpiness so I am sorry to give it up, but the depression side effects were really severe for me.

Eight years ago I when I saw Dr. Blair Grubb, he told me that SNRIs are sometimes more helpful than SSRIs for dysautonomia. He put me on 20 mg once a day and it seems to have really helped. The body aches are much less or gone and it improved my dysautonomia symptoms and carbohydrate tolerance. This is the minimum dose you can take, and when I try to increase it I get side effects like agitation and insomnia. When I try to stop it, the body aches return and my dysautonomia symptoms worsen. If you'd like to try it I recommend starting with the smallest dose possible.

Thanks Alex. I have been diagnosed with all three so I appreciate the reading material!

Have you tried wearable cooling devices yet? Something like the products here: http://www.mscooling.com/products

Also, this may interest you and help you to cool down faster: http://news.stanford.edu/news/2012/august/cooling-glove-research-082912.html

Hi all. I am a graduate student in a computational mathematics program. My "work" is part time research plus classes during the school year. I have an office where I can lay down when I am not feeling well, which lately has been several times a day. The most frustrating part of dysautonomia for me, besides passing out too much, has been the brain fog and cognitive difficulties. I know that I am intelligent when well, but often I feel downright stupid and spacey. I'll keep pushing forward, though.

Wow, that's pretty amazing (at least to me). I hope you or your doctors find a solution soon. Sorry I have no other ideas.

Yeah, I do this when asleep, too. Something will make a noise and I will yelp and bolt upright in bed. Apparently it can happen many times a night and I have no memory of it in the morning. Freaked out several of my old roomates this way.

Hello. Not sure how much salt you have been taking. Just in case you are still not getting enough, I've included this excerpt from "what helps?"

Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension. Salt helps to expand blood volume. A number of patients find salt tablets and/or electrolyte solutions to be helpful. Some physicians suggest patients who benefit from salt take in 10-15 grams daily (Low, 2000). Other physicians suggest between 3-5 grams of salt per day (Grubb et. al., 2006). Salt is 39% sodium, therefore 15 grams of salt equals 5,850 mg of sodium.

When I get tired of eating salt, I supplement with buffered salt tablets called Thermotabs.

Best wishes

Thanks AshleyPooh, Katybug, and Alex! This is very helpful. I'll also take a look at past postings and see what I can find.

Hi, I just want to say that I have almost the exact same problem as you; I have POTS but I also pass out. When they did a formal tilt table test on me my heart rate jumped to 150 bpm and my blood pressure dropped drastically, causing me to lose consciousness. My doctors tell me that is not pure POTS since I also pass out, and instead simply label it "dysautonomia with syncope". It's really frustrating sometimes, but sites like these with information like http://www.dinet.org/what_helps.htm. have helped me a lot.

Things that help me:

1) Thermotabs salt tablets

2) drinking lots of water

3)abdominal compression device

4) exercise on my recumbent bike, which I also use for getting around town since I can't drive. (I have a bike trailer for the little one, too) This is the one I have: http://www.terratrike.com/

5) Avoiding stairs and hills

6) Eating smaller more frequent meals

7) Medications: Florinef, Cymbalta, Metoprolol

I also suggest you get around to seeing a doctor who knows how to treat POTS (even if you have to travel). I highly recommend Dr. Blair Grubb in Ohio, but there is a long wait to see him. There are lists of doctors who treat dysautonomia online and perhaps there is one near you. There are also exercises you can do that will help recondition your cardiovascular system. Its important that you start with exercises you can do while laying down so you don't trigger an episode. Exercise won't cure you, but it should help reduce some of the symptoms.

Best wishes

Thanks guys for the welcome. I was wondering if it were possible that blood flow might still be interrupted to my brain, even when it registers fine in the arm. Is there some sort of imaging for this? I am sort of afraid to see a neurologist because over the years I have learned to be traumatized by doctor visits (before I was properly diagnosed). Plus, I'd have to travel to see a good one; there aren't that many in Northern Louisiana. So, I am trying to gather information to see if I really need to see one first. Nice to hear from you

Hi you all,

This is my 1st time posting on these forums, but I have been having trouble with dysautonomia for most of my life. I was diagnosed with Ehlers Danlos type III and it is believed that the dysautonomia is a result of that. My tilt table test shows that my heart rate increases to 150 bpm when upright and then my blood pressure drops suddenly and drastically causing me to faint. Then I shake as if I am having a seizure.

Sometimes, though, I will have episodes when everything appears normal, or is it that the blood pressure drops so fast people miss catching it? My cardioloist thinks I should see a neurologist to rule out other problems. When I am symptomatic I also have extreme sleepiness, trouble walking/ wobbly legs, confusion, and what I have learned is called essential tremor of the hands and arms. If I lay down and take a nap these symptoms resolve themselves.

Thanks in advance for any advice or insight