gertie

I know we're all tired of this illness & after 25 years of Dys I just want peace for awhile. I'm sorry to bring up the subject of nerve pain again but I would like your opinions. When you have a side effect or allergic reaction to meds or supplements does it cause your throat, tongue, & nasal passages to burn, & nasal congestion? I thought my burning was from rhinitis but it seems it's not. When I take my migraine/seizure med everything starts burning & I get nasal congestion, one side of face slightly swollen, headache, which lasts for several hours. I still have a headache 24 hours later. Since that is the only med I've been able to tolerate & I was also taking it for neuropathy & it worked well. Now when I take it for a seizure or migraine the burning pain starts. It never happened before until I got my last prescription filled. I insisted on brand only. If it had been generic I would have thought that was the problem. I'm wondering if they changed the formula, which I will try to find out next week. I've gotten used to the nerve pain in my legs but it seems to have moved to my throat & nasal & it accompanied by severe nasal congestion. There's no sleep to be had when you're on fire all night. I don't know what to do anymore especially since I have no medication I can take. Thanks for letting me vent.

Do any of you drink regular caffeinated coffee? I had to go to decaf about 25 years ago because caffeine made me to hyperactive & triggered migraines. Now they are telling us seniors it is good for us to drink a lot of caffeine coffee. I would like to have more energy but I don't think I can go that route. Thanks.

I haven't tried it. All I've heard about it is that it is for fibromyalgia. It does have a lot of warning doesn't it? I wouldn't be able to take it because if you are allergic to aspirin or have seizures you can't take it. If you need something for fibromyalgia couldn't you take something else? I've taken Neurontin for it & it seems to help & it helps you sleep. Keep us posted.

I know it must be very stressful on you. Do you wear a cervical collar at night? When I have that type problem I find the more I wear the collar the more relief I get. My symptoms are probably different than yours since mine is caused by cervical deteoriation. Good luck!

Thanks. I should have read the DINET website again before asking. I've read so much that the more I read the more scrambled my brain feels. It seems there are so many different symptoms.

I'm still confused. Are they the same? My PCP keeps calling my symptoms POTS but I don't pass out when I stand up. The dr that diagnosed me called it dys. My BP does fall some upon standing & I do have vasovagal syncope brought on by certain type pain. My worst symptoms are migraines, autonomic seizures, eyes not focusing, IBS, dizziness, tiredness, thyroid & adrenal problems, sweating, shaking, arrythmia, & I will pass out from exposure to chemicals, or from medications,& I get light headed if I stand too long, I could go on & on as nothing works as it supposed to. When you say POTS does that mean that your main problems are fainting, BP dropping, heart rate, & blood pooling in legs? Sorry to be so dumb but I'm trying to understand if there is a difference. Thanks.

Thanks Maggie, that would be great.

Thanks. The Lyrica being short acting would be a plus for me. If I had side effects it would be over sooner. I think it & Neurontin are the same class of drugs.

If so, do you tolerate it well? Neurontin is the only seizure med I have been able to tolerate & I was elated I had finally found something that would not make me feel worse. I thought it would be my standby forever but now everytime I take one I'm getting a headache. It is so weird. Now I've got to start over & try to find something else that I can take. Any suggestions? Thanks.

That must be scarey. Maybe I'm a big baby but when these things happen that I can't control it freaks me out. Do you take any med's for seizures like Ativan or Neurontin when this happens?

toddm, I had a neurologist tell me once that our brain fires more at night & there are more seizures at night. Have you ever done research on autonomic seizures? Is it possible that is what you are experiencing? When it happens to me I have to get out of bed. It's like I'm being hit with electrical charges & I have to get up & move around.

Good luck! I'm glad you have the support of DH. I've struggled for years with the same issues you mentioned. I feel like everything is collapsing around me. Since I'm a senior I don't have the energy left to start over & DH does not want to move & I can't afford to by myself so I'm stuck. From past experience I think you're doing the right thing.

I have them all the time & I'm way past menopause. I also flush if someone comes around me wearing fragrances or if my food allergies are acting up.

Thanks. I was diagnosed with IC about 20+ years ago when I think my Dys. started. IC is very uncomfortable. I feel sure I was having a seizure.

When I went to bed I felt calm & relaxed. I actually fell asleep right away only to wake up after a few min feeling like I could jump out of my skin. I don't know how to describe it, I felt like I was having or about to have involuntary twitching over my body. I also got cold & shakey. My tongue was tingling like I had been electrially charged. I get a gnawing feeling in my stomach. I started having to urinate probably because I was so nervous. I went to the bathroom at least 5 times in 30 min. It felt like my brain was over firing & wouldn't calm down. I took an Ativan & have seemed to calm down after about an hour. I think I've read that some of you may have experienced similar symptoms. I've experienced this several times & it always frightens me. What causes a relaxed body to awake to these weird symptoms? This must be what the dr calls autonomic seizures. I guess I answered my question. Thanks.

Thanks. I have Ativan but I wonder if it's as effective as Valium for Meniere's. Meniere's is a disease from...you know where.

I have McClezine to take when I have a Meniere's attack. I took 1/2 dose & my legs started burning & felt like the nerves were twitching or jerking. Have any of you taken this drug & had this problem. It felt like neuropathy & restless leg. One more drug I can't take. This is getting very depressing. Do you think this is because of dysautonomia? thanks.

I agree, the Fireballs are good. Some people use cayenne pepper nasal wash & gargle but that takes getting used too. I prefer a drop or 2 or oregano oil in my saline water.

If you have someone that can pick up groceries for you I would ask them. At least ask them when they go to the grocer would they mind picking up a few things for you. Since the grocery store is close a scooter or elec wheel chair would make it easier for you. Would your insurance pay for one or the rental on one?

I'm sorry for your loss. I'm a cat lover & know how much we miss our babies. I vote for a kitten if you feel you can take care of it. I also vote for a short hair because of obvious reasons. It is impossible to be sad while watching a kitten play.

Maggie, sorry about the antihistamine. The only one I have been able to tolerate in the least is Allegra & occ I will have a seizure from taking it. I had made a note of what the dr used to dilate my eyes & it was Flurox which is another brand of the flourescein sodium (sp?) that they gave you. I do remember I had a bad headache & vision blurred for several hours after, but I thought that was normal. The side effects also include trouble breathing, swelling throat, blurred vision. The only reason I had my eyes dilated was because they thought I had a retina detachment. I won't be having another dilation unless it is another emergency. Your post has alerted me to the fact that we're not supposed to have weird things happen during an eye exam.

Maggie, looks like you found your problem. I never knew there was such side effects to eye drops. Have you taken an antihistamine? I know you'll be sure to tell the next opthamologist not to use those drops. I didn't have my eyes dilated for several years because I always had a bad reaction to the numbing drops. I wonder how many people have had the same reaction you did?

It sounds like just about everyone has allergy problems. If I could take more medicines I would be a lot better. Thanks for replies.

Did you request no epinephrine in the drops they used? If you was ok until they used the drops it seems you had to be having some kind of reaction to the drops. The drops with epinephrine will cause my heart rate to go beserk. Did anyone have on perfume? I have gotten dizzy & nauseous when going from dark to light & the sudden movements. Could you have a virus that just picked that particular time to "attack". Hope you figure it out & feel better soon.

Usually when I exercise it's the next day I'm exhausted & for several days after. Did your HR go up? Did you feel well before you started exercise? Have you had your adrenals checked? I know 15 min doesn't sound like a long time but it is when your adrenals are exhausted. I've reacted that way when I've overdone & it feels like I'm trying to walk in concrete & I have concrete blocks tied to my arms. Be careful. I hope you're feeling better.