gertie

Hi Julie, I don't get out unless I have a dr's appointment. Church is out of the question for me now because of the noise & perfumes everyone wears. I don't really like people coming to my home unless they are fragrance free & I can't even get my family to leave that off so I can't expect others to. I spend my time trying to do basic household & cooking chores which takes me all day but I still never have the house clean enough that I want guests in. I don't have energy for hobbies now but I used to knit & crochet. I loved making afghans. I have gone from a social person to basically a recluse. I hate to admit it but I feel better when I'm alone because I don't have the stress of making small talk. You're still young so hopefully you will be better soon & get back to your life. Best wishes.

My PCP doesn't have a clue. I haven't had an allergist for years nor a neuro. I am not alone in thinking there are no dr's in my area that are worth going to. They don't know how to treat a patient that have symptoms that are not your norm.

I'm allergic to just about everything, meds, foods, pollen & wonder if Dys contributes to this? I don't react to pollens the way most people do with sneezing & runny nose. I react with everything burning. If my DH comes in the house without changing clothes after being outside where he's been in the Ragweed & grasses I immediately start burning in my nose, throat & mouth, sometimes my whole body feels on fire & it lasts for days. I find this very odd. DH doesn't always remember to leave his gardening clothes outside & I admit I get pretty upset sometimes when he makes me sick. Allergy meds do not help. Thanks.

I'm sorry I can't answer your question but my DIL has the same problem. She had every test run including upper & lower endoscopy, gall bladder checked, heart & I can't remember what else. When all was done they still couldn't find what was causing her pain, nausea, or gerd. She's tried everything she's read that might help & nothing has helped so far. Hope you find out what your problem is.

It could be something else you were allergic but if you try it again try smaller dose. I've tried several D3's including a cream & I have a reaction to all of them. If I take it for a few days I get so lethargic I can't function not to mention sweating & burning. Be careful.

I'm so sorry you had to go thru that. Every neuro I've been to either doesn't believe me, tells me to learn to live with it, or don't worry about it. That's why I have no neuro. I hope your next experience will be better than that.

BellaMia, I've had that happen to me several times before or during a migraine. One of my eyes will also droop. Since I'm older it really scares me because I'm terrified of a stroke & people with migraines or more susceptible to strokes. No one has told me what causes it but I think it must be something pressing on the nerves. I would like to know for sure.

Thanks for reply. I do have some pills to put under my tongue but the problem with that is, by the time the pill dissolves I'm already in the syncope mode. The years I was on huge doses of an anti seizure med I don't remember having this problem. But after I came off the med the problem started again. I do not want to have to take that much med again. It makes me so sluggish & tired, not to mention what it does to our kidneys & liver.

I'm surprised that no one takes med's for intestinal cramps.

Sara, I'm not a dr but an anti seizure med would probably prevent you from having these seizures. I was on Neurontin for years for these type seizures, went off it, started seizures again & am now taking it at night only because that is usually when I have mine. There's no need for you to suffer if you don't have to. I don't think I know what a surge is but an anti seizure med might help.

I've been diagnosed with both. So far, I haven't had the spinning when I'm riding, just sickness & the feeling of falling. When the car stops I can't stand up & I don't recover until I'm in brightly lit surroundings & then I'm very weak for hours.

I notice a lot of you also have this problem. What do you do or take when you have the sick cramping? I also have vasovagal syncope so I'm always searching for a way to avoid passing out. I ate a small amt of potatoes that had milk in them & now I'm paying the price. Thanks.

I can't remember a time I didn't have colon problems. I've always been constipated or having a painful bout of IBS.

I can't remember a time I didn't have colon problems. I've always been constipated or having a painful bout of IBS.

The only B-12 I have been able to tolerate is Source Naturals Dibencozide, coenzymated B-12, sublingual. I can't remember where I got it. It might have been N.E.E.D.S or Vitacost (can't remember) I don't know if this would work for you or not. I get side effects from most supplements. I'm still low in Vit D because I haven't been able to tolerate any of the supplements I've tried. Good luck!

Do any of you get sick if you ride at night or when it is rainy? I hope I haven't asked this b/4. I did a search & didn't find a recent post. I hope someone can tell me something to help this. I've sworn I'll never leave the house again. I can't take dramamine or antivert & ativan doesn't help this. The only thing that helps is stay at home until the sun comes out. I know how ridiculous this sounds. Thanks.

Hope you're feeling better today. We all seem to have digestives issues of some kind. My ANS has gone beserk the last few weeks so I know how you feel. It's usually me complaining about something so I'm glad to listen to someone else. I haven't been able to find a neuro in my area & my PCP doesn't have a clue what to do with me. Good luck in finding a doc to help you.

People will never understand us until they have to go through what we do. I've found it doesn't matter how much I try to explain my health problems & how they effect me no one really listens. When someone asks me how I am, I say "I'm fine". That's what they want to hear. I have not been able to go to church for several years & while trying to do my grocery shopping one day I met one of the "holy joes" from one of the local churches. They started questioning where I went to church etc. I simply said I had not been able to go because of health problems. They didn't hear a word I said, just kept telling me how I should come to church. I can't tell you how low I felt by the time that conversation was over. Don't let people get you down. Ignore them if you can. Sometimes I can't but I'm trying.

I can relate to the burning in your legs. Lately I've also had burning in my throat, nose & mouth. My symptoms just get more strange as time goes on. About the time I think I am coping with everything, something else starts. Have you tried med's for nerve pain? Neurontin is the only one I can think of at the moment but there are several. Neurontin/Gabapentin helped me for a long time & now suddenly I seem to be allergic to it. It also helped keep my emotions under control. I hope you find something that helps.

Thanks you all. I would love to be able to see Dr Low at Mayo but not able, physically or financially. I'm super sensitive to all odors. I can tell what kind of detergent a person uses when they walk in the door. If my DH goes shopping I can identify which stores he went in by the smell on his clothes. He laughs & tells me my nose is more sensitive than a Bloodhound. When DH mows the lawn or anything where he might have petrol products on him he changes clothes in the garage b/4 coming into shower. I was hoping I might finally figure out why I'm this sensitive but I can see it is not a normal symptom of Dys. Kitsa, I don't know how you manage to work in a hospital the days you're super sensitive. I would have to wear a mask all the time. I've noticed people react very negatively to anyone wearing a mask. I guess they assume the person with the mask is sick. I appreciate all of your support.

Do any of you have any kind of reaction to food odors? Any food odor. even the ones I'm not allergic to causes me to start sweating profusely, sometimes I feel like I am going to pass out. I've been this way since Dys over 20 yrs now. Thanks.

Lesley, sorry you haven't had an answer. I don't know which post it could have been but the only thing I've been able to tolerate is Neurontin/Gabapentin. Lately I've been having a problem with it. It seems I've become allergic to something in the capsule so I take it out of the capsule & put it in food. Hope you find something that helps.

My vit D levels were 8 when tested the first time. I took Vit D 1,000 - 2,000 units daily for a year & when retested it was only up to 20. I've never consumed dairy products. I think if we could be in the sun for 30 min daily it would help more than anything.

My doc prescribed it to me for cholestrerol & heart (I think). I had a very negative reaction to it. After about a week of it I became very weak & lethargic. It took me another week for my DH & I to figure out what was wrong with me.

Thanks everyone. I've tried no toothpaste & leaving off foods but this seems to be brought on by certain med's & supplements.