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Everything posted by Hope

  1. Going gluten free helped my digestive issues and body pain, but did not eliminate my brain fog. When I eliminated peanut butter, my brain fog lifted. I am still forgetful, but the zombie-like fog is gone.
  2. Bigskyfam, I'm so bad at keeping up with these posts, sorry! I did have some trial and error with meds. The first beta blocker gave me terrible headaches. Then I had to figure out how much midodrine to take in a day, because if I took the recommended amount it would give me chest pain. Any anti anxiety meds I've tried haven't worked out. Xanex makes me shake bad, like tremors. Ativan lowers my bp all the more. Zoloft gave me panic attacks. I have some other stuff in my drawer that was prescribed that I didn't even take, like Amantadine. That was from my neurologist and was suppose to help with fatigue, but it's a stimulant. I actually consulted my cardiologist on that and he told me not to take it as I am already tachy. Dr. Grubb does sound like a popular guy for dysautonomia, but I'm not even sure I want to make the trip. I seriously don't think he will be able to do more than anybody else that I've seen so far except possibly give me a more definite diagnosis. And I really do not want to do any more testing. I am currently about 75% better than I was 2 1/2 years ago and although I would like to be able to walk farther, ride my bike, work etc, I am currently happy with the progress I am making. I don't think this will ever go away for me. I think it's just about managing it the best I can.
  3. Artluvr, to answer your question about what foods make me worse, peanutbutter, eggs, gluten products, dairy, corn. Sounds pretty close to Rosey1125's diet. I recently decided to try a lower histamine diet because I think my histamine levels have a lot to do with my bp drops and brain fog. Sorry for the delay in an answer. I'm not on here so much as I used to be. I hope you find some relief soon!
  4. Yes artluvr, if I don't get enough sleep, or if I do too much in one week, or if I'm bloated, or have had a big meal (and the list goes on), I am short of breath. It seems like if my blood is busy attending to some certain part of my body that it just doesn't get to my lungs so well. At least that's what it feels like! I hope things get better for you.
  5. Wow, can you imagine a simple blood test for POTS! It's nice to see that research is really being done with this illness. Thanks for posting this article. =)
  6. My brain fog significantly improved with this year's very cold mid-west winter. That, with the addition of compression stockings to help get the blood back up to my brain, and I noticed some foods were contributing to my low bp and brain fog so they have dropped off my diet. Have you considered the food you eat at all as possible contributors to your brain fog? I haven't figured out any helps for the barometer changes, but since I have been able to cut out some triggers, the times that I can't change anything seem easier to take.
  7. Sleepbree, So glad you're getting some answers! I hope the change in your meds help and you will be on your way to feeling better =) I too had to change my primary physician before I started getting any help. Sometimes it's just not a good fit. Be well! Hope
  8. Great Article! I will have to pass this one around!
  9. I love my probiotic, but some of them seem to really make me worse. It's funny though, I take the Walgreens Brand Natural 4x and they work REALLY well for me. I used to take whatever their green ones were until they discontinued them, so now I take the Natural 4x. I've tried many that are suppose to be really good, refrigerated, from the health food store and they did not agree with me. But that's just me. My husband needs the refrigerated ones from the health food store. I think it just depends on your system. I can't go a day without taking mine or I start getting messed up.
  10. Symptoms started as a teen after Mono. I had another bad virus as a teen and was in bed for 3 weeks again, I'm sure that didn't help. I was left with Chronic fatigue from the Mono on, and on and off symptoms of POTS, but wasn't diagnosed until I was 45 after a miscarriage left me bedridden for months. Now 2 years later I still struggle to function.
  11. Meds after tilt table test. No subtype yet. I'm on the waiting list for Dr. Grubb though.
  12. Weaning off, but keeping my supply close by!
  13. Yes, I'm in the same boat, but I haven't found a good way to treat it yet.
  14. Glad to hear you are doing better!!! I hope it continues for you!
  15. Dairy is one of my many triggers. I still sneak it in my diet, but I'm guaranteed symptoms from it. Like eggs or peanut butter will definitely lower my bp but I still gotta have them once in a while!
  16. Oh artluvr, I did it again. I had a post all typed out and lost it. I'm too tired now to rethink all that. I will try to post here tomorrow!
  17. Well, I'm glad to see this post. Now I don't feel so ridiculous! My dentist appointments have been horrible on my nerves the last 2 years. I have never really liked dentist appointments, but I never used to come out shaking like I do now. And they are really good, no reason for me to be shaking.
  18. Becia, I'm echoing the rest. It's crucial for me when my symptoms are escalating. We have a snowcone maker! I've never thought about a Gatorade snowcone, what a great idea =) Hope you get some relief soon!
  19. Maybe you caught a virus along the way, but I'm sure you know a POTS flare from overdoing can cause all the crazy symptoms. Hope you get back on track soon. Feel better.
  20. I've only had to take meds hit or miss lately. I think the midodrine and beta blocker were contributing to my fatigue. I'm in the north so the cold weather, low allergy levels at this time of year, and putting on compression stockings before my feet hit the floor have all greatly improved my symptoms. I have a plan for the spring with Claritin, compression hose and a cooling vest. I don't think I will feel as good as I do now, but I hope to be better than this past spring/summer with these changes. And I extremely limit my eggs and peanut butter as I figured out these were triggers to my BP drop also.
  21. Your son is so blessed to have you advocating for him! I sure hope this is the beginning of improved health for him!
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