gertie

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.

I am sorry you are in such pain. Everytime I go to the dentist for a filling I end up sicker than ever. I wish I had an answer for you. Even if you have genetic testing you still won't be able to tolerate the drugs. I've had a lot of allergy testing done for different medicines & hormones. I've spent alot of money & I'm no better off. You're right the dr's usually don't believe we can't take the meds. I've had them say I was paranoid or had a fear of drugs, what a lie. After 40 years of trying different med's I guess I do have a fear of them now. I've nearly died more than once from prescribed & OTC meds. I can't even remember what drug allergies I have now there are so many. I know the 3 drugs I can take small doses of & that's all I try to remember. Just keep trying the tiny doses of things you know you can take. I found I could take 1/2 of a reg Tylenol better than I could tolerate children's Tylenol. There's usually dyes in the childrens products. Don't give up.

I have severe constipation & vasovagal syncope. If I get a bad stomach cramp I pass out. It's a miserable feeling to know that altho I desperately need to have a BM, chances are I will end up passed out in the bathroom. I'm always terrified of having to use the BR away from home. I've found that fresh lemon juice in water b/4 a meal helps some to get digestion moving. I'm also one who can't take fiber or eat high fiber diet. I got in a miserable condition when dr's put me on high fiber diet & metamucil. I ended up with tears in a delicate place.

Thanks for replies. Jana, good luck with CS.

Anyone have colon problems such as IBS, constipation, diarrhea, cramps etc related to POTS/dysautonomia? thanks.

I don't think my irritability issues are from med's since I only take them as needed but sometimes I do have a short fuse. One of my first symptoms of dysautonomia was I would get angry at things for no apparent reason. I was so sick & passing out, migraines etc that I couldn't take the stress of anything. I have thought of taking AD to see if they would make me calmer & be able to handle stress. Maybe the reason you are irritable just feel bad. Are you in pain? Hope you get better.

Thank you both so much. I know what you mean about yelling making you ill. My DH & I had a yelling match today over nothing (as usual) & when it was over I had to take a sedative & sit in a quiet room for a few hours to calm down. I'm still weak & shakey. I think DH & I should both grow up.

Now that I'm old I don't gets as upset as I used to knowing I've missed out on approx 25 years of life because of all the problems that go with dys. My DH & I get on each others nerves to the point I would leave but I have no strength or resources to do so. In my family no one ever gives a second thought to my illness probably because I never mention it anymore. I know no one wants to hear an old person complain, besides they wouldn't listen. I'm expected to perform like any normal person. I'm not having a pity party here just stating the truth. I think what bothers me the most is at my age I know things will only get worse. Nursing home will be the next stop when I get where I can't do for myself. Does everyone feel trapped as if you are not in control of anything? The things I used to do to keep my house presentable I can't do anymore. It seems to take all my time trying to keep meals prepared & the basic household chores done. I can't remember when I've gone shopping or to church. By the time I get dressed to go I'm pooped. I've had 2 migraines in 2 days so I guess that's why I'm feel down. Thanks for listening.

Thanks for your reply. My reaction to aspirin has been quite severe or to me it is. I feel like my lungs are on fire & I can't breathe. I've had that type reaction from some foods as well. It's very scarey.

If your symptoms are from Meniere's adding more salt to your diet will make it worse. The vertigo is caused from fluid in the inner ear & salt increases that. With POTS & Meniere's it's always been difficult for me to know how much salt to use. Meniere's is the sickest sick I've every experienced so I choose to try to keep my salt intake low.

I can't find aspirin on the list of things that help & wonder if any of you can take aspirin. I was told to take a low dose to help prevent strokes. I used to take it many years ago but developed an allergy to it after dysa. I'm wondering if I could start with a tiny dose & possibly get where I can take it again but thought I would see how others handle it. thanks.

I've had this for years. I always associate it with Meniere's. Before I was diagnosed with Meniere's I thought I was having seizures. I have times when I felt like someone came up behind me & shoved me hard. I felt like I was going to fall or black out but I realized I was still standing. Sometimes you will hit the floor. It is called drop attacks. I've fell into mirrors down steps etc. It can be dangerous.

That would be great to know if a med was going to make you sicker b/4 taking it. Do you remember approx how expensive it was. I'm on a fixed income so I probably couldn't afford it but it's worth checking out. thanks for info.

Jana, I know this will sound crazy to anyone that is not electrically sensitive but... I get those exact type zaps or feelings from being around electricity. It doesn't happen all the time but there are times I'm very sensitive. Sometimes when riding in a car & I go under or near power lines or generators it feels like I've been zapped in the head. It is painful. Exhaust fans, electric blowers, electric heaters, etc. I told you it sounds crazy. I thought the dr that told me what was causing me to have those symptoms was nuts until I started noticing what I was doing & where I was when it happened. I also had some weird experiences with med's also. Hope you find out what your problem is soon.

Thanks Suzy! I'm also guilty of listening to dr's until they make me sicker.

We've been discussing not being able to take med's & I forgot to ask if you have the same problems with vitamins. I have debilitated myself for the last several years trying to take supplements. Vit D3 made me so lifeless I could hardly get out of the bed but I kept taking it because the doc said I was deficient. Same thing with calcium & mag only they also caused seizures. If I could afford it I would like to have the genetic testing but knowing wouldn't change anything but at least I would know. Thanks again.

Thanks Suzy, if I knew I was lacking a gene at least the medical community would listen at me when I tell them that 1/8 of a dose is all I can take. Thanks again!

I am so disgusted with myself. Everytime I have been given a new drug for an illness I start taking it with optimism. I always think this is going to be the med that makes me feel better and so far everything makes me feel worse. The only thing I have been able to tolerate as needed is Ativan & Neurontin & it's probably because I don't have to take them very often. I started on Armour for Hashimoto's thy. & after taking it for a month I am so lethargic I can't function. I thought I would have so much more energy & it's been the opposite so I stopped taking it today. I've tried different doses & different thyroid meds & they all make me so much worse. I give up. The doc wants me to try small doses of iodine but now I'm even skeptical of that. Is anyone else like this? Is this a part of dysautonomia? Forgive me if I've asked all this B/4. Thanks for listening.

Thanks, Sorry, I should have said I was taking Armour thyroid meds.

Does anyone with Hashimotos feel worse after starting meds? After 3 weeks on meds I seem to be getting more lethargic/tired & brain fog. Is this normal? I thought I would be feeling some better by now not worse. Thanks.

Yes, I've tried it for Meniere's but it had a bad side effect for me. I use small dose of Ativan when I feel vertigo coming on. A lot of people tell me that Ativan helps more than McClezine. McClezine sedates most people for a longer time while Ativan is shorter acting or that has been my experience. I hope it works for you.

Thanks everybody! I intend to keep trying as long as I can.

It sounds like you have a flu virus of some kind. Do you have a temp? I hope you're feeling better soon.