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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 have already thinking on this or you wouldn't have written this post. Sorry to repeat what you already know....just wanting to reassure that you might b on to something. If you do decide to do a 24 hour volume check on yourself, you dump your fist pee of the AM, start counting with your second pee, then count the volume for your first pee the next day, ending your 24 hours. I wonder if it would be helpful to track fluid intake also (to make sure the volume is matching. I find that sometimes I'm conserving fluid much better then others, and like you -there are times when I just can't keep up. I guzzle electrolyte solution etc. My cardiologist put me on desmopressin and it has been SO so so so helpful! Though not perfect, and has some side effects, has really been a life changer in how stable I am. I've started to gain weight, have less muscle symptoms, my BP and heart rate are better.... So sorry you are going through this. Wish it wasn't this way for u
  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. I still have the weakness and pain in my arms sometimes. Though like you, I've noticed that it's worse when I stop my magnesium. Overall however I've had marked improvement. I've had just a basic screen for Myesthenia Gravis, MS and a variety of other neurological disorders. I finally came to the conclusion that for now, I'm functioning in many ways, and perhaps my life would not be improved by knowing I have a progressive, degenerative neurological disease. How's that for avoidance?;-). Best of luck to you Gail! Steven, I have long wondered if ACTH is at least a component of what's going on... but for now, I've primarily stopped pursuing diagnostics and am working to maximise function. Hope you're able to find some things that are helpful to you!
  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 "posturing." Like decorticate posturing, however unilateral posturing is theoretically seen in seizure activity (and not much else)..... Yes, have thought about the migraine component as well. Perhaps vascular spasm (precipitated by an autoimmune component???) could play a role in some of this, but I think this goes beyond typical atypical migraine presentation??? You talk about the muscle pain in arms, chest shoulder.... that I have bilaterally and is associated by loss of voluntary muscle control. So scary, especially when it spreads to chest (usually starts in my forearms then spreads to neck/throat and then chest). Have you had this? It started during a mestanont trial, and I've noticed, as you described, that it happens after I've overused my muscles. I can relate, we just moved as well, and has been flaring up :-)...Another time when my husband had a dirt biking accident and I was helping with his PT... etc. Anyway, have wondered if there is neurotransmitter component. It's like something 'runs out' or is 'used up.' FYI, this probably sounds really strange, but I've had a HUGE improvement in muscular symptoms since cutting out eggs. As they are the immune component of the egg(full of lysosomes) and function to prevent the yolk from infection, it makes sense. I've read that these lysosomes can sip right through enterocyte linen in the gut into the bloodstream quite easily. So, at the risk of sounding like a natural health quack :-)... I'll just throw that in there. Has been such a HUGE improvement since eliminating eggs. What do you find helps?
  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 sustained muscle contracting (not like a cramp, more like a contracture?) Part of what has been strange for me is my symptoms are often unilateral: loss of muscle control and muscle contraction on my right side. Have you experienced this one-sided kind of thing?
  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 gate check your chair and have it waiting for you when you get off. Usually in security they've let my kids/husband go through the line I need to use with me (not always, but usually). Having a note from your doc that you need fluids available can also be a life saver, if you haven't done this already. I had issues in security once and had to wait without water and they wouldn't let my husband bring me a drink from beyond security. It was TERRIBLE. Anyway, hope your journey is a good one. Enjoy your visit!
  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 pump in my muscles... Anyway, can you tell me more about what you experienced, why YOU think it happens, what helps/ makes it worse, etc. I'm generally frightened by the loss of muscle control, contracting and twitching and wish I had some way to understand it. Any thoughts you have would be helpful.
  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... Dysautonomia 101: how to clean salt out of an IV sight. Would love to hear of your funny uniquely POTS-ie moments. Love, Garden Gal....
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