gertie

I scare myself at times at the rage I feel. My DH had a repair in the bathroom that had to be fixed with glue. I am very sensitive to glues, adhesives etc, so I question him as I do each time glue has to be used inside, is it non toxic, odorless etc. He says it is low odor & the smell doesn't bother him which nothing does. The repair really needs to be done so I say go ahead that I will leave the house until he's finished & the glue has set. 18 hours later windows are open, fans running & the odor is still horrible. I'm sitting in a room as far from the bathroom as I can get trying to breathe. a headache & my heart doing flops so bad I can't lay down. I haven't slept in 3 days now. In case you are wondering what DH is doing at 3:00 a.m. he's sleeping like a baby. I don't know what to do with my anger. I feel like kicking him out of the bed. Excuse my ranting but it's either that or I start screaming & crying which will only make things worse. I get so frustrated at being sensitive to things that doesn't seem to bother others. Thanks for listening.

I have done that. The first time it happened to me I hit my head on a concrete floor when I fell. I could hear my DH talking to me but it took me a few min before I could answer. I was told it was probably a seizure but testing didn't show seizure activity. I also thought it might have been low blood sugar. I have never know for sure what causes these episodes.

Thanks everyone for the info. It's very helpful.

Vertigo is absolutely the worst thing. Antivert/Mclezine, Dramamine etc didn't work for me. The side effects were horrible for me but they might work for you. Smallest dose Ativan works best for me & for a lot of people that have Meniere's disease. If you don't get better soon maybe you could ask your dr about it. Hope vertigo leaves & never returns.

Ditto what skyblu said. I've tried 3 CS so far haven't made it to start the prep. I collapse from the fasting. I was so afraid I would have a reaction to the prep I tried a sample of it to see how I would react. In fact I tried about 3 different preps. I was told Miralax was the easiest prep but I had a horrible headache from it. I can't take mag citrate because of seizures & it causes my HR to drop. My DIL used the movie prep & had no problem at all. Miralax is OTC & you can mix it with lemonade or ginger ale & it doesn't taste bad. Your doc will probably work with you on the prep. I haven't had a VC but I know how stressful it must be for you. My suggestion is try a small amount of the preps before your appointment & see how you react. That will relieve a lot of your stress. Good luck!

I've always had problem with eye twitching or sometimes a nerve or muscle in my arm. I have also had a spot above my upper lip twitch & I think that feels the strangest. I have never thought to mention it to a dr but it's been happening for many years. Hope yours is nothing serious.

I know how scarey it is when the trembling starts in the middle of the night. When I first started having it I thought I was having some kind of seizure. I would shake so hard I get nauseous. I finally asked my doc for Ativan & a small amt helps. Sometimes I drink hot peppermint tea & that seems to help some. The diarrhea could be caused from the antibiotics you were taking. Let us know what the doc says. Hope you're feeling better soon.

The movie prep can be mixed with liquids like lemonade or ginger ale which makes it easy to drink. The problem I had with the CS is I have hypoglycemia & the longer I went without solid food & the more liquid I drank the lower my blood glucose got. By 2:00 in the afternoon I was passing out so I had to call off the CS. I had no trouble with keeping down the prep drink. My DIL also did the movie prep & said it was a breeze. Good luck!

Thanks for your replies. It is discouraging when you try to fix a problem only to creative something worse. The doc said I could try iodine but I've read that can also be a problem. Have you tried iodine? I've started using salt that contains iodine again hoping it will help some. For awhile I used only Real Salt.

Do any of you that take thyroid med have a problem keeping your heart regulated? I have Hashimoto's but I know those with hyper also have this problem. If I take the Armour dose that my doc prescribes my heart goes from feeling like it is going to burst, to the feeling it has stopped, then to irregular beats. It got so out of control last night I took 1/2 dose of Ativan to help me relax. I can't take enough Armour to treat my thyroid w/o messing up the rest of my body. Since I've already tried synthetic drugs the Armour is my last hope. I've tried splitting the dose & taking a.m. & p.m. but the pm dose sends me over the edge. I will have to go back to 1/2 dose as doc suggested but I know I will never have any energy at this dose. Thanks.

I know that is added stress for you just knowing he thinks you should go back to work. Is he willing to help you more if you go to work? Would he get the kids off to school? I know just getting ready to go to work or anywhere else pretty much wears me out. Hope things work out for you.

How do you decide if an online store is a reputable seller? I don't worry if it's a known company but sometimes I'm leery of giving my CC to an unknow. I know they have an address in a phone book but I don't know if that's reason to trust them. Thanks.

I can relate to what you're going thru. In my family I find no one really wants to hear my problems. I doubt that any one of them could tell you any of my symptoms or diagnosis. I accidentally heard my DH talking on the phone trying to tell someone the name of my illness & he couldn't think of it. I rarely mention how I feel. I have a teenager GD who is a sweet child but life is all about them. You can always come here for support as I do.

I hope you will be well enough to return to work soon. Does a smaller dose of ERT help your symptoms any? I feel better when taking ERT but because of migraines & seizures I can't take it. Best of luck!

I haven't been to a movie in years. It's too loud & too dark. It will trigger a vertigo attack for me.

I have been losing hair more than usual for the last few weeks but I associate it with Hashimoto's thyroid or the med I'm taking. I always seem to "shed" about once a year but I think that is normal. The hair has always come back but I'm not too sure it's going to this time. Do you see any short hair coming back? Maybe someone else can give you more info.

I hate to sound negative but I've ended up with bad reactions to most supplements I've tried. I have to be careful of foods that have added supplements especially cereals. If you haven't tried it b/4 I would try a small amount to start with.

Sometimes something as simple as plain vinegar or a paste made from baking soda & water helps as much as an antihistamine. Living in the country we are always getting bit by some kind of critter. I'm always thankful it isn't a copperhead. Sorry, I digressed.

I get that way when I have sinus drainage & the only thing that helps is a few days of antihistamines, no decongestants. I do gargle with salt water & soda solution which helps some. Some people gargle with cayenne pepper. Do you have a lot of allergies? Hope it gets better soon.

Thanks. I'm due for an eye exam but I've had the test where they cover & uncover one eye & nothing has ever showed up. It is a strange feeling. I wouldn't want to be driving & that happen.

I've asked 2 docs in my town & one of them had never heard of dysautonomia & the other has heard of POTS but doesn't know anyone with it. I've been searching for someone with vasovagal syncope for many years. When I went to my first GI doc she had heard of it but didn't have any patients with it. My neuro knew what it was but offered no treatment. Thanks everyone.

After reading posts I see I'm not the only one that doesn't have a lot of friends left. I realize I don't personally know anyone that has dysautonomia. I often wish there was someone who understood what I have gone through. I remember when I told my sister I had dys, she didn't even comment. I know she didn't know what I was talking about & didn't care enough to ask questions. She later told her family I had a brain disorder which I guess in a way is true, but in my neighborhood a brain disorder means you're nuts. Just curious if any of you personally know anyone with this illness. thanks.

Do any of you ever have this sensation? I've blamed it on migraines & thyroid but can't really say what causes it. When it happens it feels like my eyes actually are crossed & locked in that position but DH says they are normal looking. If I cover either eye I can see but if not everything is jumbled looking. I've mentioned this to neuro's b/4 & they just give me "the look". After I close my eyes for a few min everything clears but my eyes have a dull pain & sometimes I have a dull headache for a few hours. Thanks.

I can relate to what you're saying. I am so proud of you for getting your education under stressful circumstances. Things usually get better when you're least expecting it. I used to know everyone in my town, did volunteer work after my regular job, involved in church etc. After 25 years of dysautonomia I don't think I have a true friend left. When it got where I couldn't do things for other people or go to church things quickly changed to a lonely life. You're young & have a whole lifetime ahead of you to make new friends. Maybe you could find a part time job until something in your profession comes open or even volunteer for a few hours if you feel like it. Best of luck.

Sorry you're not feeling well. That's the reason I try not to be in noisey crowds. Sometimes I will think I've done ok & then when I go to bed & try to relax I will start shaking or some other weird symptom. It would be good if you could take a nap & relax. If not you might feel better to take something to help relax you b/4 you go to bed. It always seems if I get out & enjoy myself I end up paying for it. Hope you're better soon.