Jump to content

brainchild

Members
  • Content Count

    24
  • Joined

  • Last visited

Community Reputation

0 Neutral

About brainchild

  • Rank
    Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Update: I have been diagnosed with ME/CFS. I was seen at an infectious disease specialty office and had a bunch of viral panels done. I’m being treated with an antiviral med and Celecoxib. The antiviral made me tired (sleepy tired was not an issue before this). The celecoxib made a huge difference - very surprising. I can now help with basic gardening - I can bend over and pick a weed without ending up crying from the pain. This is very exciting! My food sensitivities are better too. I’m going slowly with activity and foods, but remembering what I used to be able to enjoy and hopeful that
  2. I have only tried Trioral, so cannot compare. I purchase via Amazon and since I know I’ll use them, I buy the 100 count box for something around $40. That makes it 40 cents per 1 liter; I tend to drink 2-4/day.
  3. Hi @chronic-tea-tea. Looks like you’ve had some good input on a few facets of your experience and concerns. I’ll add my experience with TTT. I had only done the stand test, at home no less. I did the test several times and met the POTS criteria each time. I was recently seen at a specialty center and I too was nervous that I had done enough to compensate via diet/meds/lifestyle that I wouldn’t meet the criteria. I elected to stop all the things that helped me a week before the appointment (they sent info that said to stop all but a few certain meds something like 24 hr before). I had an
  4. I like trioral also. It has sodium and potassium as well as some glucose. As I understand it, the formula was designed for rehydration in the face of illness (its a WHO formula, so think cholera). The glucose is there because sodium uptake is via active transport which requires energy. I haven’t tried any other electrolyte or sodium drinks so can’t compare.
  5. I have this too. You’ve described it very well. Same story for me - weird skin reactions to scratches, lying against objects - started in childhood and no one else did the same. Someone would say, ‘oh my god, what happened to you!’ I wouldn’t know what they were talking about, then would look and see red marks. It would look like I just had tangled with a wild animal and all that had happened was I had just lightly scratched an area. I’ve got suspect MCAS (per MCAS literate allergist). I don’t get dermatographism either. I had blotchy skin as a kid - looks like the pictures of livedo reticul
  6. I’m hoping some of you can help me figure out how to differentiate all these conditions. I have been diagnosed with POTS (via TTT) and FM (by rheumatologist and neurologist via exclusion of other conditions). I have a years long history of pain episodes which mainly come on in reaction to food sensitivity. I also get pain and fatigue from exertion. I went for a leisurely ten minute swim this week and had to nap afterwards for 2 hours and was done for the rest of the day. I’ve had several times when I’ll be doing some activity and I get a warning sense from my body that I need to stop. If I don
  7. I was seen at a Specialty Center recently. I searched this forum and the internet at large for months for any and all information about what would be done and what an appointment there would be like. I want to share what it was like for me for the others who are where I have been. I can’t say which one in a public post as it’s against the guidelines of this forum. I had a poor experience and I feel that it’s more worthwhile to share that not every Specialty Center visit is helpful than to share which one I went to and not say that it was a negative experience. I’m not trying to dash everyo
  8. Yet another quirk that has a cause! I’ve never had a thirst drive, unless of course I had eaten something super salty. I always figured I got enough water from my food. I used to drink maybe one glass of water per day. Of course that’s different now. I didn’t understand when others went crazy for drinks or carried water all the time. I tried carrying water, but I never drank it. Oddly, I’ve had an excessive amount of saliva lifelong too. Dentist always comment on this.
  9. I can’t comment on the autism piece, but I’ve had POTS nearly all my life and I get anxiety and panic attacks which I associate with it. Is it possible for him to have something like Xanax to help him get through this? It’s been a huge help for me. I second the suggestions to up water and salt intake (of course if his doctor oks this). I found Trioral ORS worked better for me than salting my food and drinking plain water. To add to the complexity, check into mast cell activation syndrome (MCAS). This may be playing a part as well. It is so much more than hives and anaphylaxis. Mast cells are
  10. Have you looked into mast cell activation syndrome? I’ve done reading on MCAS and there is a connection with IC. May be another avenue for finding relief. Some of the first line meds are OTC - of course you should check with your doctor before adding new meds - but they’re accessible. Here is just the first thing that came up googling MCAS and IC: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893522/ I don’t have IC, but I am suspected of having MCAS and have had significant help with adding both H1 and H2 antihistamines. The first thing I noticed was an ability to move around
  11. I'm new to a POTS diagnosis - I have just over one month of therapeutic level salt and water intake via just salt on food and plain water. I've noticed an improvement - mostly when I had to stop them for a test. I just received some Trioral ORS yesterday, and WOW, what a difference. I feel like there is hope of me being me again! I looked into making ORS at home, but then opted for the pre-made version for a trial. What I'd like feedback on is: 1. Does anyone else make the WHO recipe at home and do you find it convenient, effective? 2. Has anyone used Trioral long term and does the ef
  12. I have leg pain also. The sensation and intensity vary - can be burning feet, only in thighs, sharp pain, dull pain, shifting in location or set. Sometimes it’s worse at night and others worse after movement. Triggers seem to vary as well - foods, exertion, weather changes. I was originally diagnosed with fibromyalgia and have had this pain all over my body for years. It seems to be most often and most intensely in my legs for the past several months. I don’t have any grand treatment ideas for you, unfortunately. I haven’t found anything that touches the pain except for time and rest. Iv
  13. That’s great news! Congratulations! I get that the commute is a downnside. I also see it as a do-able hurdle to cross to get good care. Not to say others have it worse, but some people have to travel out of state to get what they need. I hope that your appointment isn’t too long a wait and that it is what you need to get you on your way to feeling as best as you can. I’ll advocate for the doc and suggest that you organize your info and be frank about what you are thinking. They’re just people and that doctorate degree doesn’t come with mind reading capabilities nor a crystal
  14. Curious why you haven’t mentioned POTS. My impression is that it’s not a common diagnosis and many doctors either don’t know about it or don’t believe it’s a real condition. If he doesn’t know about it, then he’ll never get there for a diagnosis. Seems to me if you’re pretty sure you’ve got something, then you’re only hurting yourself by not advocating for yourself. I have a family member who goes to the doctor with vague symptoms and waits to be told what it is. That’s been going on for 30 yrs. If I were you, I’d test myself at a regular interval and go in armed with data and peer-reviewed ar
  15. I agree that finding the right medical provider is key. On your path to finding that person, keep track (as you are) of specific symptoms and associated information. My experience is similar to yours. I did a lot of reading, figured out what I had, and then the doctor agreed with me. I did the NASA ten minute lean test (directions at Bateman Horne Center) multiple times. I printed up neat charts of my numbers. I went into the appt saying ‘I believe I have POTS’ and handed over the charts. You could succinctly list your primary symptoms. I’d take a peer reviewed article or two - particula
×
×
  • Create New...