gertie

Thanks lieze, I think it's worth a try. At the least the warmth would feel good.

I'm sorry you're having a bad time. I've been going through the same thing for years. I seem to do better for a few days & then I'm back to eating rice, carrots, & potatoes again. The worst problem I have with the treatment you mentioned is antihistamines cause me to have seizures. I actually feel like I'm allergic to AH. I've tried all of them & had allergic reaction or seizure to all. Good luck.

Anyone here have seizures? If so, do you take an antihistamine that does not trigger your seizures? I am at the point of despair, every med I take does something negative. I'm having inner ear fluid & can't take dieuretics so the only hope I have of any relief from this misery is AH which I haven't been able to take. Thanks.

I had less trouble with the estriol. I believe that is the pregnancy hormone. I had hormone testing done a few times but I could never tolerate any of the hormones. Dr said some people are just super sensitive to them.

I'm to old for Gardisil but I have to say my problems got much worse when I took the flu shot. I had tolerated the flu shot in the past by taking it in 2 doses, a few weeks apart. Then several years ago I was going to a dr that insisted I take it all at once saying it would not do any good if I split the dose. I let them give it to me & thought no more about it until I woke in the middle of the night & could not move. I was terrified. I finally managed to get my body moving but was very sick for at least 2 weeks. I could barely lift my arm to feed myself. I have never fully recovered & have never taken another flu shot.

I have never been able to tolerate hormones. I tried the bio-identical ones & they also caused me to have seizures. I've had a severe reaction to every med I've ever taken except Neurontin & Ativan. They are the only things I can take for my migraines & seizures. I don't know what I will do when I have to have an antibiotic. I'm sorry I can't help you but you're not alone.

I must be another odd one because any supplement I've ever taken makes me feel more tired. I came close to being comatose taking COQ10 & vitD before I figured out they were the cause & I wasn't taking them at the same time. The only thing that helps me is to rest for as long as it takes to get my strength back.

I get those type headaches when I have a sinus & ear infection. I can hear the blood swooshing in my ear as my heart beats. I also have Meniere's which can cause hearing problems. Hope you're better soon.

Ginger, I've been in your situation & I know the guilt of not feeling well enough to go to the hospital to be with a family member. Take care of you & your children first. I don't know if this relates to your dad's situation or not but when my son had a heart attack he became very depressed, gave up on life & would actually cry. It was heart breaking to watch him suffer. After a little research we found that it was one of the drugs he was taking that was causing this side effect. He stopped the drug & has been fine since then. I've also heard from others that the same drug caused their family member the same symptoms. I've forgotten the name of the drug but If you think that might be a factor with your dad I will try to find out the name of the med. Good luck!

I had put mine off for 2 years because there is so much controversy concerning them. I would ask about the chest CT. Good luck!

Do any of you feel wiped out after having a mammogram? I am exhausted, my tongue is tingling. I feel as if I've had a large zap of electricity. It's no wonder I procrastinate about every medical issue I have to deal with there always seems to be some side effect. Thanks.

Anyone here take iodine tabs (Iodoral)? I have Hashimoto's thyroiditis & haven't been able to tolerate the meds to treat it so dr suggested 1/2 of an Iodoral instead. I have such an irregular heartbeat I'm concerned the iodine will make it worse. With Dys/POTS I have no energy add low thyroid & I am lifeless. I guess I will have to try it & see what happens. I've tried so many things that made me worse I'm a "big chicken". Thanks.

Hi shoegal, I don't really know what causes them but I've noticed sometimes if I'm nauseous it seems to trigger the shakes. It must be an autonomic response to our body being under stress. I know dysautonomia certainly keeps me under stress.

I do have waves of euphoria but it is for only moments at a time. I sometimes have them before a migraine headache starts & also before or during a partial seizure. It is such a great feeling but I know something bad is about to happen. I also get phantom smells. I usually notice the phantom smell such as smoke when I wake during the night. It is so real I get up & check everything for fire & also wake DH to verify that there is not a fire.

I get the shakes but it usually feels like I'm shaking all over not just head or hands. I react more like someone that is extremely cold, my teeth will even chatter. If I get a sudden shock (bad news) or scare it sets me off, uncontrollably. Since I'm limited in meds to Neurontin or Ativan I take an Ativan if I can't get myself calmed down. Sometimes I will drink a cup of peppermint tea but not sure it helps. HTH!

I'm just curious, do you have any energy left to do normal household chores when you are on these exercise programs? I've always been a person that altho I worked a full time job I always did an intense daily workout. I find now that I have Dys/POTS that any exertion makes me worse. If I exercise today I can hardly move the next few days. Thanks & good luck to all!

I'm going for a recheck to see if my optic nerve hemorrhage has healed & dr said I would only have to have one eye dilated. I felt nauseous last time but am hoping with only one eye being dilated it will be only half as bad but with Dysautonomia I can't be sure of anything. Have any of you had only one eye dilated & did you have any problem? I'm thinking with one pupil dilated & one not dilated it may cause a weird reaction. I can't find anyone in my area that uses OptiMap. Thanks.

Thanks Jenny! I know if I could take meds without having a bad reaction I could tolerate everything better. I've noticed that when I think things can't get any worse they always do. Hope you feel better soon.

I'm still trying to talk myself into a root canal. I can't have anything with epi & the caines don't numb me without it. I have meniere's so laying down in a dental chair for any length of time is another nightmare. I have multiple chemical sensitivity so I have a bad reaction to almost everything I come in contact with. Any sedation other than numbing is out of the question. The times I've been put to sleep I was very hard to revive & took days to get over. I have osteoporosis in my jaws so I'm terrified that if I have the tooth pulled they will break my jaw. The tooth doesn't have a cavity but because the dentist drilled into the nerve while replacing a filling I can't chew on the tooth because of nerve pain. I can't think of a positive visit I've had with a dentist in 60 years. My first dental visit ended with me passed out from the novacaine & since then I've had the usual heart arrythmia problems a lot of us have with meds. Any trauma in my mouth always ends up with an infection & I still haven't found an antibiotic that I didn't have severe reaction to. I have said for years I hoped I died before I had to have any more major work done in my mouth & I still feel that way. Sorry so long but I just had to vent to someone that might possibly understand. Thanks.

Did you have to get up & go to the bathroom during the night? Can you drink a squeeze of lemon juice in a glass of warm water? That works for me.

I have the same problem. The foods I did not show allergic to during my allergy testing are the foods that cause me most problems. Sometimes it is natural salicylates in the food. Be sure food is organic. Most of my reactions are neurological or trigger IBS or migraines. ex: I'm not allergic to beef or chicken but if I eat either I perspire profusely & feel very hot & flushed altho it is organic.

I use nasal wash almost everyday especially if I've been exposed to a known allergen. I use a bottle instead of neti pot but same principle. I use salt, pinch baking soda & 1 drop oregano oil. It works very well & I have horrible allergies & nasal congestion.

At times my arms feel weak & shakey almost like I can't lift them. I mentioned this to my dr & he thought it might be related to my adrenal exhaustion.

If I have a bad colon cramp I pass out so I've tried about everything to avoid that. The GI dr told me to drink 1 tsp Metamucil (psyllium) in 12 oz (not 8 oz) of water a.m. & p.m. Instead of MM I use organic psyllium. I still only go maybe 3 or 4 x's a week but it's more normal than a reg laxative. I use warm prune juice for a backup if needed. I also read on "ask Dr Stoll" forum to add mineral oil to the psyllium but I don't remember how much. Dr also gave me Miralax but I had an issue with the ingredients in it. It caused me bad headaches. Hope you find something that helps.

Thanks everyone, my last fainting episode was 3 days ago & I'm still not back to my normal which is not energetic to begin with. I can't get rid of my fear of another one. I know it will happen just not when. I hate living in fear.