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Everything posted by Hope

  1. I lost a lot of weight while eating gluten free, but I had started losing it before I went gluten-free. Although the doctors blame my weight loss on my gluten free diet. I don't buy too much processed gluten free foods. I use Pamela's baking mix for a lot of things. I buy the big bag I eat a lot of chicken, fresh and frozen veges, rice, and rice products (like DeBoles GF pasta). I eat a LOT of potatoes. So much that I have started to cut back. Nightshades are not suppose to be good for pain, you should look that up. Potatoes and tomatoes are nightshades. Bisquick makes a good GF baking mix. I use that for chicken pot pie. The recipe is right on line. I alter it a little though to fit my needs. My main diet staple is homemade chicken vege soup. I make at least one pot every week and eat it through the week. Also Progresso's chicken rice soup is gluten free so I keep those on hand when I can't cook anything. I don't know if it did anything with my metabolism. I think the weight loss was probably dysautonomia related. I was close to 170 and within about 2 years I was 120 and I eat all day long. Mind you, I was down to 140 before I even went gluten free, hence I think my docs are off on blaming the diet. Now I'm up to 130 again. Who knows how I gained 10 pounds either. I haven't done anything different that I can think of. I hope he finds some relief with his diet changes. He's so young to have to go through this!
  2. I'm on midodrine, but my breathing problems come and go so I don't know if that's my cause. You didn't have any episodes like that before you were on midodrine?
  3. I was just telling my husband yesterday that it doesn't seem to matter what symptom is bothering me (unless it's too much heat), it could be shortness of breath, or BP drops and feeling faint, high HR, digestive issues, shakes, whatever...if I have my Rice pack heated up moving around my body and a cold wet cloth doing the same thing alternately, I start feeling better. I don't know if it's helping the blood flow, or calming my nervous system or what, but those 2 things are my "go-to" for comfort and some relief. Just thought I'd share.
  4. Chaos, thanks for posting the links. I as only able to view the second one, but it's good to see somebody is getting an understanding of this thing.
  5. I hope this helps because your previous state sounds absolutely miserable! How long have you had dysautonomia?
  6. It's interesting for sure. I wonder if any food intolerance can do the same thing, or allergy.
  7. This is hard to watch! The poor woman! I used to go through something like this about 2 years ago every morning after adrenaline surges, but not to this extent (I could talk and my body wouldn't come up so far) Now I get them once in a while when I am in a bad POTS episode. I've had a few this week in the morning again, but not that bad.
  8. I just want add to my last comment, that when I am having a really good-feel good day, my vision is great! That's one of the things I enjoy on those days. I go around telling my family "Wow, I can see so good today!"
  9. Yes, Yes, Yes! And it's frustrating! Sometimes it's just vertigo getting me out of wack, but that doesn't account for the floaters, and spots, and the "ghosting", and seeing things out of the corner of my eye (usually black spots, NOT like hallucinations). My depth perception is way out of wack and my glasses do not fix it. Driving, even when I feel up to it, has been out of the question because of my vision.
  10. I have no medical advice, but oatmeal can mess with mine and my Aunts blood sugar. I don't know why.
  11. My son's food gets stuck like that. You should definitely talk to your doctor about it. My son had an upper GI (it's easy, no need to fear)and they could see what was going on. There are probably lot's of different reasons for that to happen. My son has not been diagnosed with dysautonomia, but he shows many symptoms of it. I do have pots, but that doesn't usually happen to me. It's hard to swallow sometimes, but that's as far as it goes for me. I hope you find some answers.
  12. I echo to check with you doctor. I take a beta blocker to keep the heart rate down and Midodrine to keep my blood pressure up.
  13. Sorry to hear you are having a hard time! Hugs!
  14. This may sound tacky, but they have those agency's for people who need help around the house, or just a companion. If you have good insurance you could see if they cover companion services. Also, sometimes the city you live in has programs for shut in's. I don't use this myself because I still have quite a bit of family around, but I often think of what my future will hold and I might use this option. Have you found Potsy Paradise on Facebook? It's a nice group. I hope you find the company you need.
  15. No, but I couldn't take it for other reasons that I can't remember anymore =) It's been so long since I've tried to take it.
  16. Thanks guys.This morning I started coughing up whatever couldn't be seen on the x-rays . I'm a tad better, that's encouraging. Medicgirl, They didn't give me an inhaler probably because I already have one and a pulmo-aid with meds. They just don't work for some reason. I'm not even sure it's not from possibly overdoing it this week. Maybe just not enough blood going to my lungs.
  17. I was struggling to breath for a few day. This morning I was trying to wait until the doctor opened, but I couldn't make it. I thought I was having and asthma attack as my asthma/allergy doc said I have "Possible asthma", and I couldn't get enough air in my lungs. So off to the ER. No asthma attack, but my EKG wasn't good, so they kept me there most of the day. Ended up sending me home with an antibiotic and decided it was "probably bronchitis". I did make them check for a blood clot, just to make sure. I'm hoping this antibiotic works because the "Un-named shortness of breath" doesn't usually last this long.
  18. No replies, that's interesting. I wonder what the STATS look like for dysautonomia regarding ethnicity.
  19. Yeah, that's very typical of POTS. I use a shower chair, and tolerate the luke warm shower.
  20. I know a lot of people here are sensitive like this, including me. Fragrances can drop my blood pressure pretty quick. I have a cousin that passes right out from smelling quite a few different things. I don't know if it from the dysautonomia or not. I would think any time somebody is painting though, that the area needs to well ventilated. Maybe you could do some research on it and present it to your family so they are more understanding?
  21. galatea, I was given a diagnosis of CFS years ago now. It's crappy name for something that is not yet understood. A crappy name because it's so much more than fatigue. I am definitely in that category where I feel the medical world really doesn't know what's wrong with me. But the good Lord knows and I just plug along until my days are fulfilled. Hopefully if they ever find what is going on with CFS patients, they will give it a proper name! I hope you are able to recover from you episodes
  22. I would just get in to see the doctor. It could be dysautonomia/POTS related, or it could be something else that needs attention.
  23. Welcome! You should find lot's of support here
  24. galatea, I'm searching for an old post with a link to a study regarding POTS as a continuum of CFS/ME. If I find it, I will repost the link. And Yes, I do get episodes when I am too weak to move and find it extremely difficult to speak. This happens when I over exert myself. I have to be very careful to pace myself. I think there are many people here that find themselves in the same predicament.
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