gertie

My ears are always sensitive but if I have a migraine noise is unbearable. I wore ear plugs most of the time for several months, especially if I went to the grocery store. The intercoms & registers are deafening. I seemed to get better for awhile & now I'm going downhill again. Thanks all!

You sound exactly like me. Mine started this week. The ragweed pollen has started in N Ga & with it most everyone has sinus problems. At the first sign of sore throat or headache I start taking antihistamine. The only AH I can take is Allegra w/o decongestant & it usually takes about 2-3 days for it to help. If you can tolerate a normal dose of an AH it should help. I dread winter. Good luck!

Thanks for your comments. Michelle, have you had any problems from Klonopin? I take Neurontin for migraines & seizures but it hasn't helped the hearing sensitivity. Sometimes I think it would be better to be hard of hearing.

I'm sorry for your situation. I know how hurtful it is when family doesn't believe us. In my case I'm old now & have lost my parents but I've been dealing with the same thing from my siblings & now my child for 20 yrs. I no longer even mention I'm sick. If I do I'm ignored. I've come to realize it's all about them. I've had them tell me, "you've got it made". My family is always telling me how sick or stressed they are. Try to ignore them if possible.

Thanks everyone. Tinnitus is definitely worse when I have a migraine. Earplugs do help.

Anyone sensitive to noise? I was wondering if it's because I have Meniere's or is this a symptom of Dys? It is painful to listen to or play music even with earplugs. Music was a huge part of my life. I have tinnitus 24/7 & noise makes it even louder. Thanks.

Thanks Sara & Nina. I had not heard of that lamp. I will check it out. As for the warmth they put out, that would be great for the coming winter. What size bulb would you recommend? Also, what do you think about the lamp on website summertan.com Thanks.

I had my Vit D level checked & it was 10, very low. I am struggling to take supplements. I have to start with small dose & work up to 5,000 IU daily. I try sitting in the sun but am very sensitive to it & can't stay out long enough to do much good. Do any of you know of a home lamp or tanning bed that will provide needed Vit D? Dr Mercola has some on his website but they are very expensive. Surely there is an expensive lamp that would do the same thing we could use in the winter. Thanks.

Thanks Julie. I'm post menopausal & at this point everything has gone downhill.

I have had dysautonomia for many years. One of the results of my dys is Interstitial Cystitis & IBS. My question is a little embarrassing. With IC there is urinary frequency & bladder pain but this summer I have had mild IC but have had vaginal burning/stinging & occ anal burning. It gets worse at night. I am not sexually active at this time so I am not irritated. It feels like nerve innings stinging. I have an app't for a physical this week which I dread. I hate trying to explain this to a male dr that does not understand allergies or dys. Does anyone have these type symptoms with dys? I have stopped my B vit's & vit C hoping that is the cause. Thanks.

Thanks for the suggestion. Now that you mention it, I seem to remember that D3 is from the lanolin in sheep wool. I do have a problem with lanolin. I may be wrong about all this but I think they spray the wool with chemicals of some sort. Thanks again!

I was told to use Miralax. When mixed with lemonade or juice of any kind it has no taste. Of the ones I tried it was the easiest to drink.

Be glad the GI cares enough to hospitalize you. I've tried & failed 3 colonoscopy preps & dr won't hospitalize me. I have hypoglycemia & can't go 24 hrs w/o eating. The more I drink the lower my glucose gets. What they were going to give me for sedation was Deprivan/Propoful. It's an anesthesia that wears off quickly. I was told the prep is easier on you if you eat lightly for 2 days b/4 the prep. No seeds, fiber, red meat etc. Good luck!

The D3 is causing my throat, tongue, & feet to burn. I took the vit at noon & I still don't feel well. Thanks for replies.

Do any of you have a problem with this supplement? I'm deficient in so many vitamins & minerals but I also seem to have a bad reaction to them. I'm buying physicians grade brands but I can't tell they are any better than the other brands. It seems to me if our body needs these things we would be able to tolerate them. Thanks.

Do you have vertigo (room spinning) or just dizzy? If it's vertigo you may have developed an inner ear problem. That's how my Meniere's started. If it's inner ear you will most likely have to stay on a low sodium diet. If it's an ear problem sleeping propped up with 3 or 4 pillows might help.

I am sorry you had to experience that. It may be a blessing in disguise. Maybe the dr you find will be more caring & have a better nursing staff. I'm finding lately that in every office there is usually one nurse or office personnel that is a horror. I would write the dr a "private & confidential letter". He will probably never get it but you'll feel better. Good luck!

Thanks everyone. I live in a small town & the PCP I've been going to for years has never heard of dyst. It's an hours drive just to see an Endo. The closest neuro that would know about dyst is approx 3 or 4 hour drive & if I had the energy to go I probably couldn't take anything they prescribed, unless it was bed rest. It is a helpless/hopeless situation for a lot of us.

Joe, I haven't been to Vanderbilt but I noticed there are posters on ndrf.org that have. One of them had an app't on July 8th so I'm anxious to hear how it went for her. Good luck!

I've been asking myself that question. I also read post of others that keep going to a dr that doesn't know how to help them. I went to a neuro for awhile that didn't understand dyst. Everything I ask her she just says, don't worry about it. I quit going. If you do, why do you continue going to a dr that isn't helping? No disrespect intended, just curious. I think I kept going simply because I know I need medical attention & think they would eventually be able to help me. Thanks.

I haven't heard that about no B-6. It usually says to take B complex so you will get a balance of all the B's. B-1 or B-2, can't remember which, supposed to prevent migraines but neither of them worked for me. It's trial & error usually error for me and supplements.

I can relate to that. Sometimes it takes 4 tries for me to get something down. I'm always afraid I will choke. It feels like, for a moment, like I've forgotten how to swallow. The times it happened to me I was on anti seizure med. I wondered if I was over medicated & stopped taking it.

I've probably tried every vit supplement twice & have had a problem with all of them. Since dr said I was deficient in B-12 I'm trying again. I have 3 different brands, all S/L. I took only 1/4 of a 1000 mcg tab methyl B-12, which I'm told is the best, & I got heartburn, & sweating. I don't believe this is possible yet I'm experiencing it. Does anyone take B-12 & what kind do you take? Thanks for sharing.

Thanks Helen, I think you're the first person I've found that has this. I have migraines also and think mine is probably related to constricting & dilating arteries.

This is one of the weirdest things I've experienced & I can't remember what dr called it. It took me a lot of years to find a dr that had ever heard of it. If I look at something red, purple, or pink, then look at something light colored it looks pink. I've been having this for several years. The first time I noticed it I was in bed. My pillowcase had a red flower on it & when I looked at my white sheet, the sheet was red. I freaked out. It's very distracting to be looking at a red hazy computer screen. If I wear pink or red clothes the world looks pink. I wonder if that's what they mean "looking at the world through rose tinted glasses". It didn't happen for a few months & now it's back. Has anyone else had this problem? thanks.