gertie

I have never been able to take drugs in my life & now I'm desperately trying to find something I can take to calm my nerves & still function. I have been able to a small dose of Ativan but I always end up with a headache. Because of Meniere's, Dys, seizures, allergies, I have a dental phobia that is paralyzing me with fear. I need root canals & I don't know how I can sit through it. Being put to sleep is out of the question for me. Would you share with me what you find works best for you in these situations. I can't tell you how great is to have this forum. Thanks.

I have times when I look at an object that is red & look away everything is red. When I had purple sheets on my bed everything in the room appeared to be purple. It was like wearing tinted lens. This is a very strange feeling. Has anyone else experienced this? I mentioned it to my Opthamologist years ago & he didn't seem concerned about it.

I've had that happen with migraines & with partial seizures.

With Meniere's I am so lethargic I feel drugged. Sometimes my eyes are jumping, nystagmus is the technical name I believe. The eyes will rapidly go from side to side. Are your eyes actually moving or does it just feel that way?

When I was trying to get my disability they would call me & questions me about what I did on a daily basis. I never knew what to say, other than it varies. Some days I am sicker than other days. It was more like they were interviewing me to see if I was mentally competent. I don't know how to explain it, but they would call me & try to get me to do all the talking. I know you've had people call you & they are mostly silent on their end & you feel like you need to keep the conversation going.

I know what you're going through. That is the reason I could never get my disability.

Thanks for the info.

Do you know anything about this? Does this mean Parkinson's can be a symptom of Dysautonomia? Thanks.

My symptoms started many years ago with flushing & sweating & nothing has changed. I feel cold some of the time but I know it's only a matter of time before I begin blazing. When i start to eat or anyone in the house is eating I react to the food by flushing. It doesn't have to be a food I'm allergic to, just the smell of food. I use no chemicals in my home but when I go to bed at night I almost always flush for a few min until my brain gets accustomed to the change. Anyone that comes in my home I react to them & their odor in this manner. It feels like I'm burning from the inside out. Is this what you experience with adrenal flushes. I know this is nothing compared to all the other miserable things we experience but when I sit down to relax or sleep it would be nice not to start this. I know it's not menopause. Thanks.

I had an MRI & SPECT scan several years ago when my symptoms first started. The MRI showed an injury in the temporal lobe (can't remember which side), gliosis, which I think means an injury to the central nervous system. The report also showed white matter which they first thought might be MS or Alzheimers but later ruled out both. My memory was terrible then & 25 years later I can't tell it's gotten worse except for things that happen with normal aging. The only thing I remember about the SPECT report is that it said my brain was not symetrical. I have no idea what that means.

Thanks everyone! I'm doing the nasal wash. I tried NasalCrom & had bad reaction to it also. I haven't tried Periactin unless it's the same as some of the others but I will check it out. I've tried compounded meds before but I usually react the same way with them.

Am I the only person that can't tolerate antihistamines? Can someone have an allergic reaction from AH? I thought AH was to stop allergic reactions yet when i take them I have allergic reaction. I need them desperately. I am only able to eat a few foods & have nasal congestion & ear probems. I've tried every brand name they make as some time over the last 25 years & they all cause seizures or some other side effect. Thanks.

I'm sorry I don't know how to set up a poll. I see we have all blood types represented but AB.

I'm B+.

What is your blood type? I thought we had discussed this before but I couldn't find any post. Thanks.

Thanks everyone. I think I'll try it.

Does anyone take Biotin? If so, have you had any side effects? Thanks.

The discussion on age got me wondering about how long are most of you up & being productive during the day. I push myself to stay up a lot when I really need to be resting. I would love to hear your comments. Thanks.

Thanks for your offer to help but I decided to leave it.

I agree with you. It doesn't matter what I eat I seem to have some type negative reaction. I try to choose the things that I react to the least. It does get boring eating the same bland foods all the time but at least you won't starve.

I've existed 68 years in spite of this illness. The thing that frightens me the most is that I've not been able to take meds for my Hashimotos thyroid, high BP, heart arrythmias, syncope, meniere's, arthritis, IBS, flu, strep throat & other infections. I know it's a miracle I'm still here. I try to never let the family know how miserable I am. I feel if you are able to treat your symptoms you will live a long life.

Thanks. It wouldn't let me delete.

Thanks for your replies. I had a big problem with Benadryl & so does most people with seizures. Tennille, it seems so strange to me that when I take an antihistamine for allergies that it actually causes an allergic reaction. My throat tightens & my tongue & throat become numb, heart palps. It's just weird.

How does one completely delete a post. I've replied to an old post & can't seem to remove it. thanks.

I'm sorry this has happened to you but you are not alone. My Dysautonomia symptoms started with migraines, flushing, food & environmental allergies, & I couldn't sweat. Later I changed to flushing & sweating, seizures, exhaustion,shaking, insomnia,IBS, & the list goes on. I reacted to every medication I was given until a neurologist gave me Neurontin. That helped migraine pain & I could sleep, it also helped with the flushing & anxiety. It wasn't a cure but just getting a nights rest helps me cope with things better. I've had Dysautonomia for approx 25 years & Neurontin/Gabapentin & Ativan are still the only meds my body will tolerate. Hope you get help soon.