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Everything posted by gertie

  1. I get the chest tightness & short of breath & I do get nausea but can't remember if it's at the same time. How long does it last?
  2. I do have peripheral neuropathy in my feet & legs at times but since the winter weather has started my feet are so painful I can hardly walk. They either feel cold like their frost bitten or their burning & the weight of a sheet or socks hurts. The rest of me will be toasty warm or sweating but my feet cold. When they do start feeling warm then they are burning. When I read what I posted it sounds impossible. I can't believe that symptoms like this can be related to Dysautonomia. Is this part of this illness? thanks everyone & Happy Thanksgiving!
  3. I think my vit d level was 11. Dr said it was the lowest he had seen & started me on a supplement. It made me much worse. After a week I was so lethargic I could hardly get out of my chair & I started on low dose.
  4. MedicGirl I had a good day for me, not as many problems at once to deal with today. One day at a time. You're due & deserve something good coming your way soon. gjensen, It is such a good feeling when we meet someone that makes an impression in our lives. I didn't take time to appreciate my family when I was well either, always busy. I've learned a lot since I've been ill but most of it is too late. I do love Damselflies & Hummingbirds, can't wait until winter's over & they're here again. Thank you both.
  5. How long does the episode last? I experience all over shaking & teeth chattering uncontrollably at times that last a few min when I've had a shock or scare . I don't feel cold but I can't stop shaking. I feel it looks like I'm having convulsions but I'm conscious.
  6. Thanks MedicGirl, You are in my prayers & thoughts.
  7. Thanks for your replies. It means so much to me to have you to talk to. I do have autoimmune problems. I'm through whining now. looneymom, your son is so lucky to have you. It must be extra difficult for a child. Becia, I hope things get better for you soon. I hate leaving my home (my comfort zone)for any length of time. I'm afraid if I start crying I will completely lose control & never stop. MedicGirl, I can't imagine the stress you're going through now. It makes my problems so trivial. I hope you have a full recovery. I have always had animals & even bottle fed some orphans & they were my babies at the time. I lost the 20 + year old cat I adopted when she was a baby. She had been my constant companion for over 20 years. It was the hardest loss yet I'm still mourning her. I don't have the physical strength to take care of another one yet. Maybe someday.
  8. Let me begin by saying I am very thankful for what I have & how well I am compared to a lot of people with terminal illness. But I do have times I think of all the living I've missed over 30 years. My body goes from having migraines, partial seizures, costochondritis, neck pain, fibromyalgia, Meniere's, degenerative arthritis, thyroiditis, gallbladder attacks, IBS, bladder, nerve pain, heart arrthythmias, severe chest pain, & on the list goes. I don't ever seem to have a moment I'm not stressed from something going wrong with my body. I can't remember a time I was not miserable from something. Even dread being awakened from sleep with severe pain, never knowing if it is something I need to have seen about or if it will pass. Sorry for long vent. I can't take med's so I'm limited to what a dr can do for me so I'm trying to suffer in silence & not cause anxiety for DH. No one understands anyway. How do you cope with this?
  9. I have that problem a lot especially if the food is dry like chicken or baked potato etc. The only way I can eat a baked potato is to put a ton of butter on it so it will go down. I have thought I was going to choke and once it gets in my chest area it hurts, feels like it is cutting my esophagus. I also have some kind of a hiccough that starts & continues until the food finally gets completely swallowed. My chest usually feels uncomfortable for awhile after things get down. It's hard to describe but it is frightening. I try to be sure & take small bites & chew well.
  10. I have been in your situation for years. At first it was very lonely & depressing. Now maybe because I am so sensitive to fragrances & everyone seems to take a bath in perfume before they visit I actually prefer to be alone. I know that sounds harsh but I'm so much sicker after their visits. I just don't have the strength anymore to deal with it. I do enjoy phone calls but most people text & maybe because I'm older I hate it. I do miss the personal contact & the feeling of having friends to talk with. Summer is easier for me because I can feed Hummingbirds, birds & wildlife or have flowers to look at. Winter is very dreary. Sorry I can't be of help.
  11. Thanks for your comments & info. I don't ever want to go through that again.
  12. Has anyone had any problems while having your teeth cleaned? It's stressful for me but have managed to keep my appt's over the years, mostly because I'm a fanatic about clean teeth. The hygienist used what I understood her to say was an ultrasonic scaler because it saves her a lot of time. I have had it used before in previous cleaning for short spurts on places hard to clean but this time she used it for the entire time. I thought my heart was going to beat/flop out of my chest. It was so erratic I didn't think I would make it through the procedure & the noise trauma to my ears was horrible. I started feeling nauseous before the procedure was over but managed to finish. At the time I didn't connect my heart rate to the ultrasonic device but now I wonder if that was the problem. My HR is never normal, always skipping & adding beats but this was misery. It took me a min to get out of the chair when it was over. I was so shaky I could not write a check at checkout. Sorry this is so long. thanks for your input.
  13. Is he using "no voc paint"? If so, if there is a smell it will be gone in a couple of hours after opening windows & airing. If it's regular paint it will be a long time before scent is gone. Fumes from paint make me very ill. Dizziness, headache, breathing problems, fainting, seizures are problems I have but it may not bother you as bad. Do you have a room with an open window where you could get fresh air without being in the outside cold? I am hyper sensitive to all chemicals & odors, paint being one of the worst. It is full of chemicals & usually has warning on the paint can not to breathe fumes. Be sure you wear a heavy mask until odor is gone.
  14. Everyday for approx 30 years. Don't give up things will be better.
  15. I was always able to take the med's I needed until one day I took an antibiotic I had taken before & had a severe reaction to it. Since then I've reacted to one drug after the other until dr is afraid to give me anything. I know I would feel so much better if I could take something for my multiple symptoms. thanks everyone.
  16. Blue, Ditto what Katybug said. I have migraines also and Meniere's which has destroyed my hearing & balance. I don't know why but I seem to think more clearly when I have a migraine. Maybe because more blood to the brain? I was trying to read this a.m. & had to keep reading the same paragraphs over & over because I could not concentrate. I wonder sometimes if I have adult ADHD. I have so many things on my mind at once I can't seem to grasp any one thing. The only thing that slows my brain down is the Neurontion I take for migraines but it seems to make my memory worse but I feel calmer. I am really worried about Alzheimers now that I am a senior. I hope you find help.
  17. Thanks. I agree about the bleach. I have had seizure from the smell.
  18. Is being allergic & sensitive to medications, food, fragrances, & chemicals part of Dysautonomia? I was diagnosed with MCS years ago and have been trying to understand if this is a part of Dys. I know people who have been diagnosed with both & don't seem to have a problem with these sensitivities. thanks.
  19. I think you're being very brave. I've had syncope for many years & I admit when I feel it coming on I panic. With the partial seizures, so far, I've still stayed conscious but I can't think or carry on a sensible conversation for a few min. Migraines can also have some strange auras. Have you ever tried (low dose) Neurontin or that type of drugs for migraine prevention? It helped me a lot when I was having them every day. Hope you're better soon!
  20. Becia, You must have been very scared. I have partial seizures & migraines. Certain meds will cause me to have partial seizure especially hormones or any kind & antibiotics. I've also found that almost anything can cause a seizure even herbal oils, supplements& chemicals. I've even had mine triggered by food. All this plus syncope & much more started with dysautonomia. If it was the tramadol & they change your med, hopefully you will never have another seizure. Best of luck!
  21. Thanks everyone! Alex, the book sounds interesting.
  22. Do any of you shake uncontrollably, teeth chattering, as if you were freezing cold? I have what I call internal shakes often but my hands & arms will not be shaking. With this I'm actually shaking. I've done this ever since having Dys. I wake up in the night occ feeling slightly nauseous, anxiety starts, & then the shaking. I have also done this when I get really stressed. It usually last about an hour before I can get it under control. thanks.
  23. I haven't raised the head of my bed yet. I use several pillows to prop my head. I do get tired of trying to sleep in that position but it seems to help. When I have to get up during the night I sit up a few min before starting for the bathroom. I also leave small light burning to help keep me oriented. I also have Meniere's disease & have no balance without a light to keep me focused.
  24. I had bad reaction to flu vaccine and was so weak I could not turn over in bed for days. I don't remember losing the use of my arm but I actually felt almost paralyzed at times. I could not hold my head up to eat. It lasted about 2 weeks. I never fully recovered & I had always taken the flu vaccine. I had been able to take antibiotics & medications that I needed until that happened. Now I'm allergic to basically everything. That is the same time I started having autoimmune problems & dysautonomia. I will never take another vaccine.
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