gertie

In my experience with the herbs that are supposed to dilate or constrict blood vessels, such as the gingko biloba, it will trigger a migraine headache. They will also aggravate interstitial cystitis & could cause heart arrythmias. That's all the personal experience I've had with them. HTH!

Thanks, all the info helps. It takes so long to get an app't with a dr these days one could forget why they wanted to see one. I'm not persistent enough in making & keeping my dr app'ts. I don't drive long distances anymore & I always feel like I'm imposing if I ask someone to take me. I know no one really wants to take the time to do it. The dr's in my area are just not up to date & I've yet to find one that understands my problems. Thanks for your support.

Thanks for answering. By irregular I mean it skips beats, beats too fast, feels like it stops, sometimes feels like it jumps. The cardiologist always says no caffeine, or certain meds which I'm on neither. I've had this problem off & on for years. I should be used to it by now. Thanks again!

Do most of you have irregular heart beat? At times my heart feels like it will jump out of my chest, skip beats & can see it beating. I go to the cardiologist, he checks me & says everything is fine. He doesn't think my vasovagal syncope & arrythmias are anything to worry about. He mentioned that allergies also effect the heart. Just wonder if this is a part of dyt?? Thanks.

Thanks for the info. Nothing I find out about dyt makes much sense to me. No wonder most dr's don't know what I'm talking about or what to do about it. I'm glad I found this forum.

You probably just did too much. Most of the time I clean my floors sitting down. I have to ask, what did you clean your floor with? I have had this type reaction to cleaning products.

I have times when I shake so hard my teeth chatters but I feel cold. I also have times I am very hot & sweat drips and times my legs & feet are so hot I can't stand a sheet to touch them. Sometimes my legs will jerk when I lay down at night but so far haven't had a problem walking. It seems to go from one extreme to the next. Let us know if you get an app't with neurophysiologist in Dallas & how it turns out.

Has anyone heard of this or have info on it? All I can find on it is that the vasovagal response may be the trigger of hypoglycemia is dyt patients. I have sensitive vegas nerve w/ vasovagal syncope & wonder if it may be related to my low blood sugar. I would like to know more. Thanks.

Thanks Meg, I know you're thankful for your mom. I have no one but DH & by the time I got his attention & told him everything to do, I would be passed out from the stress of it. LOL! Sad but true.

Endure, Allergist can test you for the medicine you want to take & if you show allergic they can make an antigen for you to take that might prevent you from being allergic to it. That did not work in my case. IMHO is you are allergic to something you should avoid it. It could be your allergies that are causing you to be in so much pain. A good allergist can help you find out what foods & inhalants etc you are allergic to & how to manage your allergies. It is not an easy road doing without foods we like but sometimes it is necessary. It is only common sense that breathing & ingesting chemicals will make us sick. Some people seem to get by longer than others. If you're in the US near Dallas, Tx you might want to check out the Environmental Health Center. I'm sorry you're suffering. Hope you find help soon.

I've never taken recreational drugs but other than that I know what you're going thru. When I go to a new dr & they ask for a list of my drug allergies they don't believe them when I say, I'm allergic to everything. I have migraines & everything I was given to stop them caused them. I was having seizures & had to take Neurontin. I couldn't believe it didn't cause anaphylactic shock. The only other thing I can tolerate is Ativan, but can only take 1/2 of the smallest dose occ. I can't tolerate pain killers or aspirin. The only thing I can suggest, & you probably already do it, is when you try a new drug start with about 1/8th to 1/4 of the dose. If you tolerate that in a couple of days increase the dose until you find best amt. for you. An environmental allergist might help you. I went to Environment Health in Dallas, Tx for testing & after spending a lot of money on antigens, supplements etc. I couldn't take any of them. I can't have caffeine, alcohol, makeup, lotions, cleaning products, vitamins, perfumes or scented products will send me in a seizure. I have not found any antibiotic that doesn't cause me to seizure, break out in a rash, or my throat close. When I had an ultrasound of my gallbladder I looked like I had been burned. When I have to have blood drawn I ask the nurse to use peroxide instead of alcohol. The few foods I tolerate I eat organic. I use all natural & unscented products. Sorry I can't be more help. I know how depressing it is but over the years I know what to expect & have learned to cope with it. Good luck!

Thanks all! From all the research I've done there is no easy solution. I have had IV's that contain nutrients & glucose & did fine during the IV. By the time I got home I passed out & at that time didn't understand why. Now I know to have protein available at all times.

Is this common with dysautonomia? Do a lot of you have this problem? If so, how do you manage to finish a medical procedure where fasting is involved? The more liquids I consume that contain sugar the lower my glucose drops. The only thing that will stabilize my glucose if protein. Also, do you know what kind of IV's are given to stabilize our glucose levels? I can't image that it contains only sugars. Thanks.

I know a lot of us have problems with drug allergies & sensitivities. Do any of you know if or where one could find compounded vitamins. I think it would be easier for me if the skin aborb the nutrients. Also, does anyone know how to keep glucose from dropping when fasting for medical procedures? I'm especially worried about the time from midnight to morning when I'm not allowed to have any fluids. This would be a good time for a compounded protein. Well, I can dream can't I? Thanks.

Happy Birthday Ernie! Hope you stay in remission forever.

Thanks for your comments. I also have Meniere's disease so I am supposed to limit salt for that reason. I know if anyone has problem with fluid around heart or lungs they must limit their sodium intake to 1,000 mgs daily. With so many different health problems it's hard to get it right for everything.

I know a lot of us use a lot of salt in out diet but being a senior I worry about kidney problems from too much sodium. What is the maximum daily amt of sodium you use? Thanks.

I was just reading the post where B1 helped Dyt. Did you try the cream or pill? I have a problem with most vit's but I do tolerate a compounded cream better than pill.

Thanks for replies. The only choices I have are neurology, neurotology & neurophysiologist & pediatric neurology. There was only 3 neurophysiologist & they are all 100 miles away.

Do any of you faint when getting IV's? I've never had a problem with having blood drawn but I passed out once after taking an IV vitamin supplement. I didn't pass out until it was over & I started home. I could never figure out why that happened unless I was allergic to it. thanks.

Thanks everyone. The summer heat is not helping this situation either. My heart feels like it is either about to stop or is pounding in my chest.

In choosing a neurologist to treat Dyt which category would I look under? There is a listing for neurotology, neurophysiology etc & I don't know which one to choose. The neurologist I have now is useless. Thanks.

What is it about Dys that causes me to be so tired? I hardly have the energy to lift my arms. I had a stressful day yesterday & 2/da I can hardly move. Is this "normal" with Dys? thanks.

I don't sleep very much either. I wake up every few min thinking about all the problems I have to deal with. When I do take something it is Ativan .05. Just 1/2 of a tab usually relaxes me enough to rest. It is one of the few things I can tolerate that doesn't make me feel hung over.

Thanks for your replies. I appreciate your help very much, it helps lessen my anxiety over trying a new drug.