gertie
-
Posts
946 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Resources
Physicians
Member Stories
Information Resources
Links
Posts posted by gertie
-
-
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.
Feels Like My Eyes Cross
in Dysautonomia Discussion
Posted
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.