gertie

I guess it's my age but if I faint it seems to take me 24 hours to get back my strength. I don't have any energy & a fainting spell wipes me out more. When I was younger & could still work if I fainted in the a.m. I could still recover enough to get to work. That was approx 35 years ago before I knew what was wrong with me now when I faint I have to crawl to bed & stay for a long time. thanks.

Thanks Jenny, That's sounds like good advice unfortunately I've tried all the AH & all have triggered seizures. I took Allegra in a pediatric dose with less problems but eventually I had seizure from it also. I guess it's hopeless.

Thanks Maggie, Optomap sounds like the way to go but I wonder how it sees into the optic nerve. I'll check it out.

Thanks Naomi, I would be happy if I could find 1 antibiotic I could take. I think Penicillin may have caused the worst reaction with throat swelling, itching, rash. Mycins are equally as bad. I've started with 1/8 dose even pediatric liquid & it's all bad. I know at my age I can't get by without something I can take for infections. The dr's I have access too have tried everything over the years. I know they hate having me as a patient.

I'm 68 yrs old & of all the meds I've been given over those years I have 2 prescriptions drugs I am not terrified to take when needed. That also includes vitamins & otc drugs. I've never been afraid to try a new treatment or supplement but they have all made me feel worse. If any of you have this problem, how do you manage not to be terrified to go to a dr or dentist? The thoughts of having surgery makes me ill. I've been deathly ill from gall bladder attacks but feel that if I go for surgery I'll have to take antibiotics which I'm also allergic to. The drugs don't just make me feel bad they cause seizure, syncope, migraines, heart problems etc. Thanks.

I'm not familiar with mestinon but I do know anything that constricts, or dilates the blood vessels will cause a migraine or any med such as an AD that changes brain chemistry will trigger my migraines.

Thanks everyone, I too get a brain buster of a headache. Kate, I had my appt last Friday & would have cancelled but it was an emergency so I had to go. I have to go back in a few days to have one eye dilated & checked again & I'm already stressing over it. I will take half an Ativan before I go this time to see if that helps. That might be something for you to think about. I'm so tired of being allergic to everything.

Do any of you have weird feelings when having your eyes dilated? I felt nauseous the last time I had mine done but wondered if I was just nervous. The drops didn't have epinephrine in them. The nurse let me read the box but the ingredients list meant nothing to me. thanks.

Thanks enko, I'm not in pain from the eye. I will be rechecked in 1 month. I do have a lot of headaches, mostly migraines. Good luck to you.

enko, I was tested for glaucoma but didn't have it. The only problem I've had before this hemorrhage has been the vitreous detachments. I've had migraines for years & can't help but think that has been a factor in the hemorrhage. I remember them telling me years ago the vitreous is attached to the retina & when the vitreous detaches there's always a chance the retina will also. I'm sure you've heard all this before. I hope you don't have any more problems. I

Have any of you had a problem with optic nerve hemorrhage or vitreous detachments? I've had 3 or 4 detachments & now the hemorrhage. I was told to be careful that these could lead to retina detachment. Dr's are always telling us senior to exercise & be active & when we do this is what happens. Now they tell me be careful, don't bend over, don't lift, etc. Don't know what to do anymore. Thanks.

jenwic, I use Magick Botanicals oil free shampoo & other hair products. I order them from N.E.E.D.S.

Thanks everyone for your support. Naomi, Thanks for articles. I do have MCS that started about the same time as Dysautonomia. I had toxic exposure to pesticides several years ago. I also spent many hours over a 3 mo period at Dr Rea's EHD clinic being tested for allergies, using the sauna, learning what to eat & avoid. Of all the treatments I've tried it seems I had a negative reaction to most everything. As someone said nothing is a cure.

I have temporal lobe seizures but so far only partial. I start getting a strange feeling like I'm walking into a dream, a familiar place, a place I want to go but am not completely there. The dr called it dejavu. It's hard to explain. I still hear everyone talking & carry on a conversation with them if necessary. I always have a headache after.

Ditto to what everyone else said. If it's not caused by Dysautonomia I don't know what it is, but I hate it.

Thanks Naomi, I'm not sure why we're like this but I hate it too. I have migraines & seizures & know that most people with these are sensitive to odors. I think it's just part of autonomic nervous system dysfunction. What irritates me the most is when people with the fragrance lie to me & say they don't have any fragrance on. Life with dysautonomia is bad enough without having to deal insensitive jerks.

I know I've posted about this before but I need your help again. I will begin by saying I do have a good family & am trying not to alienate them by being a nag about coming in my home reeking of perfume. I've bought them unscented laundry detergent, hair spray, soap etc which they will use until it's gone & then it's back to the same old stuff. It's their life & I can't tell them what to do. When they're here I just suffer knowing I will have a migraine or sinus inf from being exposed to fragrances. They came in yesterday, I had a migraine in the afternoon & have been sick all day. They came again this afternoon so I know it is going to be another migraine tonight & the exposure makes me really nervous & feel like crying. It's not a new thing, this has been going on for 25 + years. They've been told time & time again how sick this makes me. I can't move because anywhere I go there will always be someone that reeks of perfume. When I read this back I sound like a pity party. How do you handle a situation like this? I've reached the end of my proverbial rope. Thanks.

I have had Hashimoto's since the beginning of Dysautonomia. One time I will have thyroid checked & it will be low, the next time it's checked it will be normal. I have not been able to take any medication for it because of this.

Thanks for your help. I always dread the dentist.

I'm glad you're being checked by a neurologist. I have dysautonomia/POTS & I also have seizures, migraines & too many symptoms to list. If I use hormonal therapy of any kind I get some weird symptoms & most meds do me the same way. Could it be a med or supplement you're taking causing these symptoms?

I don't think I would ever eat if I waited until I got hungry. I have to eat because of hypoglycemia. My appetite was better when I was taking Neurontin. Is she a diabetic? I'm wondering why she is drinking diet soda? They make my heart arrythmias worse & trigger a migraine but of course everyone doesn't react the same. I wish I knew something that would help her. Hope she gets better soon.

Has anyone had a root canal? When the dentist filled my tooth he drilled into the nerve. What makes it even worse, I didn't have a cavity but was only having an old filling replaced. Now I can't chew on the tooth. It seems every experience I have with dental work has been negative. I've been putting this off for a long time but the only other alternative is to have the tooth pulled. That would be a faster procedure but I still wouldn't have anything to chew on. I have severe reactions (seizures)to glues & other chemicals. I'm told it takes a long time to have a root canal? What was your experience. Thanks.

Thanks everyone. The roommate or housemate is a good idea, something to think about. I think I might feel like I just had another job to do.

I notice that most of us have days/weeks when we feel to ill or weak to get out of our chair. I can't help but wonder how you keep your household running?? I live in rural area where there seems to be an unending list of chores that always need doing. I'm a senior & can't afford outside help nor can I afford to leave my home & go to a retirement home. It seems to be a hopeless situation for us on a fixed income. thanks.