gertie

Do any of you have trouble focusing your eyes when driving? While driving I notice my vision gets blurry & I have trouble focusing. I'm sure it's this way all the time but I notice it more when driving. In 50 years of wearing glasses I don't think I've ever had a pair that I could wear. At the exam I can see fine but by the time I get my new lens things have changed again. Thanks.

Thanks for your replies. One neuro says seizures the last neuro I went to wasn't concerned. I usually only get them when I am on a new med or hormones. When I mentioned this to the dr her only comment was, well don't take the med. She did testing & doesn't think I have seizures. We don't have very good dr's in my area.

Do any of you have what my neuro calls dejavue? I have experienced this several times over the last few years & wonder if it is related in someway to dys. I start feeling like I am digressing into another memory or life. It is a feeling I've been there b/4 but I never fully get into the whole memory. It's a very familiar feeling when it's happening, but when it's over I can't remember what the memory was. I still know who & where I am but it's a strange feeling. It lasts only a few moments but it is so scary. I always have a headache when it's over. I don't think I've ever known anyone who experienced this. It seems to happen after exercise or when I have been very stressed. Anyone know what I'm talking about? Thanks.

Do those of you with neuropathy or burning feet & legs notice that certain foods make you burn or hurt worse? Thanks.

I tried compounded prog. It made my migraines worse & it also caused a type seizure that caused me to hallucinations.

My mother had them & now me & my son. My son only has them occ.

How do you do in social gatherings? Does it make you sick or do you enjoy it? I have had to stop all unnecessary events that puts me in contact with a lot of people. I have always been a people person until Dys. I had to go to the funeral of a relative yesterday. I thought I handled it well until I got home & had to collapse for the rest of the day. I was sick all night. Everytime I would almost fall asleep I would wake shaking. Each time I thought I was going to have a seizure. Today I don't have the energy to move. I've been sick about 25 yrs & thought I should be able to handle things better than this. Thanks for your comments.

My facial flushing is brought on mostly by perfumes or chemicals. I had to visit a funeral parlor yesterday & immediately upon smelling the flowers I turned beet red & started sweating. So embarrassing.

Thanks you for the great info. I always start a new drug with 1/8 - 1/4 dose. I did more research & found that the Neurontin/Gabapentin I take for migraines or seizures is the same type drug as Klonipin.

I'm still trying to get the nerve to try AD. At 65 you wouldn't think I would be so cautious but me & drugs don't mix. It's getting to the point that everything & everyone gets on my nerves. I don't feel like doing chores but I'm the only one to do them. I don't want to go anywhere or see anyone. I would just like to sit in my chair & everything be quiet. One of my concerns is that I have migraines & seizures. I've read a lot of posts & the 2 that I'm considering is Klonopin or Effexor. Have any of you that have migraines tried either of these? If so, did they have a lot of side effects? Most drugs I try make migraines worse, double vision, seizures etc. Sorry to ramble. Thanks.

Could you have Meniere's. I have all those symptoms from Meniere's. Stores with tall shelves or aisle's close together will put me into a spin.

I think I know how you feel. Not only do I have Dys I also have arthritis but I am so ashamed of how my yard looks I got the rake Sat & started trying to clean it up . After a few min I was so exhausted I barely made it inside to shower. I can barely walk 2 days later. The only advice I can give is try not to let it get u down. When I get where I can move again I'll probably try it again. Good luck!

Thanks! It makes sense that when we have pain the BP goes up. I can't remember a time in the last several years I wasn't hurting somewhere if not all over. I can't take any of the drugs to alleviate the pain so I try to grin & bear it.

I have had all those symptoms. Sometimes I shake so hard my teeth chatter. I can't hold anything in my hands because of the shaking & I feel a cold that I can't describe. The only thing that helps me is Ativan. I tried Valium but it made me feel hung over. Best wishes!

Thanks everyone! I tried magnesium & for me it made them worse. Good luck.

My BP is usually 130/65 but for the last few days it is 158/79. I have had several days of worse pain than usual. I wonder if that could cause it. Do any of you have ups & downs in BP? Thanks.

Thanks for your reply. Sometimes it's hard to know what to be concerned about & what to ignore.

I've had this for many years which is probably part of Dys. I've noticed that after I lay down to relax at night that my heart is very irregular, feels like a fish flopping in my chest. After a few min it seems to calm down. Do any of you experience this? What causes this? My cardiologist has never thought my arrythmia was anything to worry about but this feels strange. After years of weird symptoms I don't get excited about much. Members of my family have spent days in the hospital with issues I've learned to ignore. Thanks for your support.

Does the dr check your liver function periodically? My D level is very low. I'm supposed to take 4,000 IU daily but admit I'm only taking approx 1,000 IU daily for the last 6 mo. I think I do feel better but since I'm 65 I'm afraid to take more until I have another blood test.

I don't remember what it feels like to be "normal". After 25 years my family simply does not get it. Because I don't lay in the floor & moan they do not think I'm sick. When they ask me how I am, I just say I'm fine. I know they don't really listen anyway. I listen to their complaints, which seem nothing to me, & know if they had any idea how bad I felt they would not mention their problems to me. I'm not sure anyone really cares how someone else feels but I hope I will always try to sympathize with others problems.

I feel cold all day especially my hands & feet then at night I sweat. Sometimes in the day I will suddenly feel temporarily hot all over for a few min then back to cold. I've had no heat in my bedroom all winter. I'm never comfortable get very little sleep.

Thanks Flop! That sounds like one of the "home remedies" we use here in the southern USA. I have all those ing. Thanks for the reminder.

Thanks suzy! I've read that also. I tried it one winter for respiratory inf but all it did was make my migraines worse. Thanks for reminding me I will start adding it to my diet. I'm looking forward to June & July & warm weather.

I've been exposed to strep throat thru the grand children. Since I've never found an antibiotic I can take without serious allergic reaction I'm concerned that I will get strep. The GC are always bringing in some illness. Are there any antibiotics less likely to cause problems in POTS patients. In the past they always causes me to seizure, faint, rash, itching, throat swell, stomach cramps, & the list goes on. Dr has tried me on low dose of several & nothing works. I've asked about compounded antibiotics but they are not available. Any suggestions. Thanks.

I went thru the same thing several years ago when dys first started. Most of my symptoms were caused by multiple chemical sensitivity. I became allergic to my soap, det, lotions, hair products, cleaning products, perfumes, etc. I could no longer go to church or any social event. My first response to these products was feeling hot inside. Later I would feel hot inside & out as if I were on fire. Just something else for you to consider.