gertie

Thanks everyone. dizzyblonde, getting outdoors in the fresh air even if for only a moment would be good. lgail, I wish I had an answer for you. Maybe if you stayed seated with you feet up as much as possible. If you're sensitive to perfumes you might ask that the other guest refrain from wearing any. rubytuesday, I can see you & I have a lot of the same problems. I also make myself do things I know will make me sick. When I ask my family to not wear strong fragrances I'm totally ignored. I don't like to bring attention to myself so I stopped mentioning it.

I know we've discussed this before. I keep trying to be involved with people so I will have a feeling of be semi normal but it just isn't working for me. It had been months since I had been to be in a social gathering. So I accept an invitation/reunion & when I start out I feel like my brain will work enough to carry on a conversation, but the more people I come in contact with & try to think of something to talk about the worse I feel. The more perfume & scents of their clothes I absorbed the more I felt like I was going to pass out in the floor. I shouldn't say this because everyone here will think I'm nuts, but my DH actually agreed with me on this. One of the cakes tasted like laundry det smells. I'm assuming they had stored them in their laundry room prior to the event. It's been several days & I haven't recovered yet. I've had a seizure & migraine since then. There is no de-sensitizing myself to these environmental toxins because I've tried everything, even exposing myself to perfume. How do you gracefully decline when people are nice enough to include you? If you don't go they think you don't care & they certainly don't understand the illness. Sorry so long. Thanks.

Thanks everyone. It's sad to watch someone suffer in this condition. It's bad when drs don't know what causes these problems.

I have had them on my body for years & they do not fade. I've asked the doc about them & he just says it's nothing serious.

I had an elderly neighbor that suddenly became unable to swallow. The dr's dilated the esophagus & he would be able to eat a small meal & it would collapse again. This happened 3 or 4 times being dilated again after each collapse. The doc had never had this happen before nor did he have an explanation as to why it happened. Is it possible that the person had autonomic nervous system failure & that is why the esophagus collapse? Doesn't the ANS control that also? Thanks.

Sounds like a seizure of some kind. Are you taking any new medication? Some medications such as antihistamines can trigger seizures.

Is it possible you was exposed to an environmental toxin & didn't know it. Pesticides effect me that way.

This is one of the first symptoms I had when I first had Dysautonomia. I would urinate every 15 min 24/7. Be sure you get checked for all the obvious things. Mine was diagnosed as interstitial cystitis but I suspect it was all caused by autonomic dysfunction. There are meds for that now, but now when mine gets out of control I take Neurontin/Gabapentin. It calms the nerves. Be sure you don't stop taking in fluids or you will get dehydrated. I thought like you do that if I didn't drink I wouldn't urinate but I still felt the urge. Don't drink acid drinks like OJ or cranberry. Sometimes eating a couple of Tums will keep the bladder from being acidic. Good luck!

Are you having any problem with your inner ears? Don't ask me what ears have to do with the eyes, but when I have fluid in my inner ear which can cause vertigo I also get the vision problem.

I've been trying to find a dentist to replace the one I've used for 35 years that retired. It is so hard on me to get the strength to go to a dentist. The first one had a nice clean office & a kind hygienist but I don't like the dentist because I don't trust him. I went to another dentist today for consultation. The office smelled of something that has made me sick & have headache. I've showered, washed hair & I still smell it. Anyway, it was dirty I feel like I probably caught some dreadful disease, I didn't like the nurse but I liked the dentist. After making myself sick today just having x-rays, I can't bear the thought of going back in that office to have work done that would take 2 hours. I could not stay conscious that long. Please tell me how do you pick a dentist. I don't have the energy or money to go to every dentist in the area for consultation. Of course DH has to take me. I've asked everyone I know what dentist they use & they all have a different dentist. Sorry for the rant but I'm so sick of all this. Thanks.

I can't function in the kitchen when I'm at my worst. I had a relative that was in a wheel chair for years (not from POTS) & she did all her cooking well until into her 80's. She did her food prep at the table. You do have to be careful around the stove when in a chair. I don't think that would work in your condition, sorry I can't be more help.

Meclizine caused me to have a seizure. Ativan or Valium is supposed to calm the vestibular system & help the dizziness. Good luck!

I always feel these holiday get togethers last too long.

Yes, I have both.

I am so thankful for all of you & ditto to each response. I feel better if I can be at home alone. I'm dreading the holidays. I've been invited to family gatherings & the idea of having to make conversation with a lot of people & trying to get the energy to cook is too much. There is no point in trying to explain this illness to anyone in my family because no one listens. I listen to everyone else complain no matter how trivial they sound to me. Then there are others who have terminal cancer so I realize how lucky I am, even tho I may feel miserable.

I know we all live under undescribable stress on a daily basis from this illness. I've always considered myself a strong person when dealing with sick people or animals. I've been a care giver for at least 50 years of my life & managed to stay calm in any situation, but now when one of our animals are not well I freak out. Instead of taking them to the vet myself I try to talk DH into doing it for me. If I can't handle the stress of a sick animal what will I do when it's a family member? Does anyone else feel as if their coping skills have gone beserk? feel I've lost control of my emotions but of course my family doesn't understand this. Thanks.

It takes time to adjust to Dys/POTS if we ever do. I've had it many years & some days I wonder why I bother to struggle & other days I do ok. The way I see it we have no choice. We were put on earth for a reason, altho I'm not sure what it is, but we must do the best we can. We can try to set a good example for others. The thing that helps me most is, "take one day at a time & not worry about what might be". I have not cried because of this illness but I get angry. I know it's hard to imagine anything worse than what you're going through, but there is. The rocking feeling may be inner ear. I also have Meniere's disease which causes that feeling. The Benzos could also cause that symptom. Be thankful you have someone to stay with you daily. Stay strong, things will get better.

Thanks potsgirl, I can't tolerate fragrances either, in fact I seem to be allergic to the world.

Thanks for everyone's help. I did a little research on PJ & was surprised they think it might even cause cancer. Pure kitchen grade cocoa butter or coconut oil is also a good moisturizer.

I'm having weird symptoms today & can't figure out what could be causing them. The only thing different I've done the last few days is use petroleum jelly on my hands. My hands have been so dry I decided to cover them with PJ & wear gloves during the day. Today I have been lethargic, nauseous, brain doesn't work & on the verge of shaking uncontrollably. I washed the PJ off my hands & maybe slowly getting better but still feel awful. My DH reminded me that I used to have a sensitivity to PJ but I didn't think the body would absorb it. Have any of you ever had a problem with PJ? I feel so stupid to have these kind of reactions to such common things. Thanks.

Sometimes I will get on my knees to tuck the sheets under the mattress. That keeps me from having to bend over so much. I strip the bed first & after I recover from that I start replacing the clean sheets.

Thanks everyone!

Someone mentioned Butterbur. My dr send me home with "Petadolex" by Integrative Therapeutics. He said his wife had had less migraines since she had been taking this. I haven't tried it yet because just about everything triggers a migraines for me. I have also heard that drinking a tsp of Epsom salts in a glass of water helps. It's magnesium so that may be the reason. That's a very old remedy. Hope you're better by now.

Dry mouth & dry eye is why I choose not to take meds such as Ativan or antihistamines all the time. I knew AH dried up body fluids but i wasn't aware that Ativan or Valium does the same thing until my dental hygienist told me. She told me she could tell the people that were on those meds because their mouth was always dry.

Am I correct in thinking no one else has had a problem with Tylenol??