gertie

I react that way when I take antihistamines & sometimes it will progress into a seizure. Most people that have seizures can't take AH. I believe Flunarizine/Sebelium is an AH. Have you tried Gabapentin/Neurontin or a similar drug for migraine prevention? If I take a 100mg Neurontin cap at night I sleep better & do not feel drugged the next day. I am a person that does not tolerate drugs but it does not seem to bother me other than I sleep better.

thanks.

If I design an image to go on a shirt or any personal belonging of mine that will be seen by the public, would I have to copyright that design in order to keep anyone from copying it? I probably said that all wrong but you know what I mean. Thanks.

Thanks for your reply. I agree with you but there are girls in our neighborhood dating at 13 & I think they are still babies. I really wish it was a law they couldn't date until they finish college. LOL!

What is the average age girls start dating? I think this must be a scarey time in a mothers life. So much can go wrong. Thanks.

I'm not sure Neurontin helps pooling, but it does help neuropathy & it also calms my nervous system. It also helps migraine pain.

I am on no medications or supplements. My DH thinks it's funny because he eats meats, sugar, all kinds of junk & his chol & triglycerides are very good. I've always read that if you don't eat things that contain chol that your body makes it. I just don't get it. I even stopped using olive oil because of fat content. thanks.

A little over a year ago my cholesterol & triglycerides were high, my HDL & LDL also not normal. At the time the testing was done I was eating meat occ. I decided to try lacto veg diet using 1% fat milk occ in cooking, also no sugar except a spoon of jelly occ. I had blood test done last week & was I surprised to find out that all my test were higher than the previous year. Triglycerides had gone up from 183 to 255. My vit B12 was also high. It was 945 on a scale from 243-894 being normal range. My B12 has never been high even when I ate meat. The reason the dr checked it was because he thought it might be low since I had not been eating meat. The only suggestion dr had was for me to exercise more. Anyone a vegan & have this problem. thanks.

I'm not hypermobile & I have had marcaine but I think I had the same response to it. Every dentist seems to have their own preference as to what they use for numbing. I know that without epi the numbing effect doesn't last as long. It seems I get so nervous in the office that my blood vessels shut down & after I leave the office I relax & blood flow starts again & then my tooth gets numb. I know that sounds ridiculous but that's how it feels sometimes. Thanks everyone.

I've noticed the last few times I had to have dental work done my tooth never gets completely numb no matter how long they wait or how much novacaine they use. It's not the dentist because I've been to more than one & it's the same with each dentist. When I'm having a tooth filled I can't help but jump when they hit a nerve that is not numb. I've had the dentist stop & ask me in a not too friendly tone "am I hurting you mam?" I respond yes, but go ahead & finish the procedure because I know it won't get better. I'm not a candidate for more sedation. Do you think this could be caused by Dys? I do have a lot of trouble with nerve pain, migraines & seizures. I have another dental appt & am already feeling the stress. I do take a small dose of Ativan b/4 going but it doesn't help the tooth pain. Thanks for your help.

Do you find that laying flat makes the palps worse? I noticed when I go to the dentist this week & they reclined the chair flat my heart felt like it would beat out of my chest through the whole visit. I also remember that the prior visit they left the chair in a more upright position & I didn't have a problem. I didn't think about this until I got home & I remembered a dental hygienist told me once that she had heart patients that couldn't be reclined. Thanks.

I had horrible burning pain for years so intense I couldn't sleep. It was not an infection but I was on fire. Nothing I tried stopped the pain. All these years later I still do not know what caused it. It gradually got better which I contributed to getting some of my allergies under control.

I had the same problem with constipation for 40 yrs or more. The only time I could go was if I drank warm prune juice or took a laxative & that didn't always work. I finally went to a GI dr that knew about Dysautonomia. He told me to take Metamucil 2x daily. He said to take 1 tsp MM in 12 ozs of water (not 8oz). Also, eating fiber constipates me more, the more fiber I added to my diet the worse I got. I know MM is fiber but it is different. It didn't help immediately but after a few days it started to help . I never expect to go daily but I'm happy with 3x a week.

Thanks for your reply. I did try food drops but they made me very ill. I reacted to one of the preservatives in them. I also tried the preservative free injections but I could not tell any difference so after awhile I stop using them.

Is food allergies part of Dysautonomia? I've been suffering from them for over 30 years. They started about the same time as all the other symptoms of Dys/POTS. I've been through all the testing, shots, etc & everything that supposed to help only make them worse. The strangest thing about the testing is that the things I didn't show being allergic to seems to make me the sickest. It takes at least 2 days to get over the reaction to a food & by that time I've reacted to something else. I never seem to get energy from my food just lethargy, migraine, eye & nasal swelling, IBS etc. I really get tired of not getting to enjoy my food knowing the odds are it will cause a problem. Anyone else have this problem? Thanks.

I was always very active. Run 5 miles after work, rode bikes, aerobics, softball, basketball, weightlifting. I was very much into weight training when I became very sick. After leading this life style all my life (until I became too sick), and wearing out all body part from over use, I don't believe in exercise. I see women now my age that never exercised in their life & none of them have arthritis or other ailments I have. They still wear high heels & I'm struggling to walk in old lady shoes because I ruined my feet & knees running. They still look great.

Were the green beans organically grown? I had allergy testing for vegetables & found I was not allergic to the vegetable but to the pesticides used in growing the veggies. I had basically the same reaction you described.

I'm nearly 70 so I've experienced about everything except my own death. I've had Dysautonomia (disabling) for at least 25 years. As bad as all these symptoms are they don't compare to Meniere's disease or watching a family member suffer & die from a terminal illness. I'm not saying Dys/P.O.T.S. is not bad & it did ruin my life but there are things worse.

You had a bad year, hopefully things will get better. Because of my experience with the medical community, I don't have any advice. Are you better after you've been hospitalized? What do they do for you that makes you feel better? I'm just curious if any of the treatment you've had have helped you.

Jen, When I started reading your post I thought I had written it until you came to the part about your DH. I have brain injuries related to falls & know how scarey it is. My husband is opposite to yours. He doesn't get excited about much of anything. He did get a little upset the first time he saw me hit the floor, he thought I was dead. The only time he knows how bad I am is when I pass out & I ask him to help me to the bed . Most of the time I have been alone during my worst episodes. I never know how long I have been passed out in the floor. After 25 years, I think my DH is just tired of hearing it. I try not to talk about my illness & all the symptoms that go with it. He does gladly take me to the dr appt & does grocery shopping. My autonomic nervous system had shut down & I couldn't function either. My brain didn't work correctly not any bodily function. I was started on Neurontin which helped a lot. Your DH is probably just overwhelmed, worried about you & wondering how he is going to cope. An admirable trait. Are your children old enough to help? Maybe a relative. Are you on any medications? I wish I had some answers for you. Best of luck!

I've not had a problem with not tasting my food. I had the problem with everything, even my favorite foods, tasting absolutely vile. Foods tasted so horrible it would make me ill to eat them. Not tasting would have been a blessing. That started about 2 years ago. I'm still not able to eat a lot of foods I always loved. No one has been able to tell me why this happened. I do know some medications will cause you not to taste food. I never get thirsty.

I found out the hard way over the years of hypoglycemia that I can't be strictly a vegan. I must have meat. The protein in beans, nuts, etc just doesn't keep my blood sugar stable. I also am unable to do any medical test that requires fasting. I tried 3 times to do a colonoscopy cleanse & started passing out each time about the 5th hour in spite of drinking what seemed like gallons of fluids. I never leave home without taking a snack with me. good luck!

Have any of you that can't take regular meds ever tried homeopathy? If so, what was your experience? Thanks.

Sometimes I describe it as feeling like I'm trying to move in drying concrete.

Katie, could it be costochrondritis (sp?) When i first started having pain from that I thought I was having a heart attack.