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Everything posted by GardenGal

  1. Good idea. IgE and IgG blood testing was literally life changing for me. Have had DRASTIC improvement. And I had to just pay cash, ordered by a MPH who though out of the box. Good luck!
  2. Thanks Potsie. Feeling better now. Good ideas. I do a lot of what you mentioned, and will try to bulk up on my fruits and veg. Have a family history of hereditary fructose intolerance and feel pretty bad when I get too much fructose, but can usually balance it with some proteins in moderation. I did find a senna based tea and it was helpful. Yes, so thankful for Zofran and also use it sparingly. Thanks for your input an relating to my situation
  3. Thanks guys. What I think was a GI bug has passed. It's sometimes hard to know because I am always SO blocked up that I don't get diarrhoea, just a lot of nausea, trouble keeping meds down etc. Am doing a bit better now. I take herbs and a LOT of vitamins C daily to keep things moving. Unfortunately Docusate, milk of mag, mag citrate, etc. have not been real helpful in the past for me... The Zofran helps a lot with the nausea and gastroporesis..... but makes the constipation worse. Oh dear. WinterSnow, hope your studies show something that's helpful with to problems you are having.
  4. Ha! So funny! And I'm sorry that happened to you Pistol.
  5. and delayed GI motility in general.... How to manage a GI bug? Any good ides?
  6. My brain fog seams worse when I have a sinus infection... and I don't have classic symptoms (just air not going up as high as normal into my nasal passages, pressure, blurred vision). Also going off gluten has brought a huge improvement in my brain fog... but I will say, I'm so sorry. Though I've had improvement intermittently it remains one of the sad/frustrating aspects of this for me as well.
  7. Ha! oh my Shannoncr that's funny, and awful all together! Thanks for sharing -)
  8. Interesting.... I used to find swimming helped because I could actually move without getting dizzy, but now being at a pool (even without going in) is really really difficult. It's like kryptonite. I am not sure why. Is it the noise? Humidity? visual stimulation of the moving water? I don't know, but now and then I force myself to go (thinking it's in my head because I can't understand it)... and invariably I end up a mess.... Any body else? Ideas?
  9. Yes, it helps a lot. For me, more helpful than stockings 🙂
  10. So difficult. May you have wisdom and grace as you advocate for your daughter. I sent you a direct message.
  11. Agreed on avoidance of the Epinepherine, but have also had trouble with prilocaine (other name citanest) even though it doesn't have Epi. See side effects. However, I now request Carbocaine (other names: polocaine, mepivacaine) and have done just fine with it. None of the awful winded cardiac dizzy thing I've experienced in the past. It is shorter acting, and I request it special ordered before appointments. So while I don't know if it would work for you, for me it's been such a relief to know I'll do just fine with it. Hope your biopsy goes OK. That can be nerve wracking.
  12. Agreed with bombsh3ll. Urine should not be clear if dehydrated. It's dark to conserve. so sorry this was your experience. What about doing a 24 hour urine volume on yourself. 2 litters ish of pee is probably OK... 3 is pushing it. if you're getting 4+ liters, there's a problem. You're flushing nutrients and electrolytes.... Either you're drinking too much (sometimes as a result of the thirst centers in your brain being jacked, or your body is flushing fluids too much and you're drinking a lot to keep up/trying to compensate. This is an over-simplification :-)... but general idea. I'm sure you
  13. Gail, I will say that listing to your symptoms, I at least feel less crazy :-).... sounds quite familiar. I'm so sorry for what you are living with. I do not have Raynauds. Though my hands and feet get cold, not to that extent. You? On the eggs, I've had muscle testing and IgG/IgE testing that suggested I was reacting to them. I didn't believe it for years, and then finally went to just having them in baked goods, etc.... and then cut them out entirely. Through multiple elimination diets I finally was willing to admit that there was a striking correlation in my neuro-muscular symptoms and eggs
  14. This is cause for celebration indeed! Am glad for u!
  15. Hi Emily. I'm so sorry your daughter is having this. I've had some run-ins with SVT over the years. Not fun. How's she doing?
  16. I'm not sure in POTS, but with other facial flushing a baby aspirin or apple sauce helps. Strange but true https://clinicaltrials.gov/ct2/show/NCT00895193
  17. Hi Steven. Well your unilateral symptoms sound quite familiar both in presentation in progression. When my dysautonomia started I also had a couple ER visits (with admission in one of them), diagnosed as "TIA" (mini-stroke).... however TIA symptoms by definition resolve within an hour, and I had residual right sided weakness (right hand, foot/leg), for about 8 months after. Now, the same contracting/weak/muscular-neuro stuff that used to happen unilaterally does happen sometimes on both sides more diffusely, so in that way, much the same as yours. The best way I can describe it is as "posturin
  18. Hi Steven. Thanks for your response. A lot of that sounds familiar. Definitely the dysautonomia and the muscular symptoms coincide for me as well. You sound pretty certain that in your case the underlying neurological component is causing the muscular symptoms (primary dysautonomia)?? I've generally assumed the same about myself as well, but have also wondered if the underlying muscular issues are primary for me and the dysautonomia is secondary, for example, the smooth muscle malfunction in GI tract and vasculature causing hypotension and gastric slowing etc. Do you have problems with sustai
  19. Good for you! using a chair when traveling was so hard for me to accept, but also freeing and such a relief. A relief also for this traveling with me. Hope it's a tool for freedom for you. Call customer service and let them know ahead of time. Issues arise when there's airports under construction, etc that use stairs or a bus to get to the gait, etc. and they don't have pre-arranged personal to get you through that process. Have had some anxiety ridden pre-boarding time hoping I can get my chair onto the concourse. You able to walk from the plane door to your seat? If so, it's so easy to just
  20. Hi Gail, I'm curious about the muscle twitching, spasms and cramping you described. I feel like a lot of my other dysautonomia symptoms are more 'understood' (GI stuff etc...) but have a lot of muscle related issues that my dysautonomia specialist things are outside the general dysautonomia umbrella. To me, these symptoms are very scary. Usually right sided contractures, weakness in my L face and then on and off muscle twitching. I don't think the twitching is as bad as you have described, but still frustrating and sometimes painful. My internist things it may be a problem with calcium p
  21. 6 years a go, I could have written that post! Sounds so familiar! I hope it's encouraging for you that the GI symptoms (especially the nausea, wrenching, weight loss and heartburn) are SOOOOOOO much better than they were. I just thought I'd pipe in with that, because sometimes I find that the progressive or ongoing trajectory of this illness can be so discouraging. But that is one area that I'm so thankful to have had marked improvement. May it be for you too! PS: I do take LOT of vitamin C - it's the only thing that works for me with the constipation.
  22. O Cory. I smile because it's so typical, and terrible. I crumped right after making it through security in Denver once. Already dumped my water, but sprawled on the floor shaking, and they though it was a security risk when my husband asked to get me some water! That chunk of time waiting for a wheelchair and a bottle of water felt like eternity.
  23. Oh my Edriscoll!!! That's so awful and funny and I am so so sorry that happened to you. Yes, there was a period of a couple years for me of fighting to do what I used to do, and thinking I 'should' be able to, that landed me in some pretty rough spots. Aaaaaaah acceptance. Still hard for me on a lot of days, but also brings a level of stability and peace I have come to appreciate.
  24. Ha!!! Timber! I love it! Where's the worst place you've gone down?.. I will say a public restroom is SO not my favourite place to check out the floor intimately. though perhaps less embarrassing then airport security with hundreds of people looking on.
  25. We all have them... Like when the public restroom you scoped out upon entering the store is too far away from the bench you have crumped onto. What IS most important after all? Peeing or not blacking out? Today I was laying in bed when my valiant partner brought me some salt for the kale I consume like it's going out of style and he inadvertently spilled a large volume of good ol NaCl down my sleeve and into the dressing of my IV sight. Some people go to movies or hike for kicks. We giggled our way through dust-busting the bed and shaking me out. They should have classes for this stuff.
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