Jump to content


  • Posts

  • Joined

  • Last visited

Profile Information

  • Gender
  • Location
    East Coast

Recent Profile Visitors

806 profile views

Sylvie33's Achievements


Newbie (1/14)



  1. If you do have a mast cell disorder (and I am currently on the elimination diet to see...for diagnosis is tricky) pork emits more histamine than beef or chicken, say. More importantly, any food that is not absolutely fresh, and/or kept as leftovers ...even cooked or sitting refrigerated, (especially meat and fish)....will have histamine levels rise expodentially the longer it sits. Even if you don't have MCAS, the rise in histamine in leftover meat might trigger an allergic response....especially in warm weather, when food degades more quickly. Also, you might try fresh garlic. Try using very fresh meat and freezing leftovers. Defrost in the microwave rather than letting it sit. Garlic is generally not a trigger, but might be for you....especially in a preserved form. By the way, I'm eating really well (and actually gaining weight on this diet!)
  2. A concern about Mestinon is that some people do not have the gene to metabolize it and it then causes acute neurological symptoms.... including peripheral neuropathy. All American service people serving in the Middle East were given this drug prophylactically to guard against nerve damage from toxins. All 100,000+ victims of Gulf War Disease were found to lack the gene, where no veterans with this gene had GWD! Took decades of research with a concerted infusion of funds to determine this. So, be cautious. Also think about what a similar effort might do for the understanding and treatment of dysautonomia.
  3. I have both autonomic and sensory small fiber neuropathy (SFN).. So I have POTS and other forms of autonomic dysfunction...as well as tingling, pain, and other SFN sensory symptoms. Your symptoms echo mine at the time of my acute onset 15 months ago. A nerve conduction test (which I found painful, and I'm pretty stoic) showed nothing, for it is not an appropriate test for SFN (it only tests large fiber function). The test needed to determine SFN is a skin biopsy.....I had one from two sites...ankle and thigh...so my diagnosis is polyneuropathy. This test is a piece of cake It's getting to an underlying cause that is difficult for me. My doc thinks it's autoimmune mediated. I've tested negative for about 15 things although he says there are over 100 other AI disorders for which there are no tests. By the way, my dysautonomia is much improved! My sensory neuropathy, not so much...but it's tolerable. You might wish to do some research about Mast Cell Activation Disorder, which can cause or accompany (and worsen) your symptoms...including SNF. Diagnosis is difficult, so I just went on a very strict low histamine diet three weeks ago...I already see improvement..... particularly with my gut, energy levels, and almost complete resolution of constant eye burning and rhinitus. It's a challenge...but doable. I'm actually enjoying learning new recipes, and I'm hooked on chia seeds! We'll see what happens with my SNF down the line. Best, Sylvie
  4. I would first suggest you get your potassium level checked. Mine was low, and I was prescribed potassium. My level is fine now, and I've stopped taking them. If your levels are good, why worry?
  5. Just be careful with B6....it can cause peripheral neuropathy.
  6. I sent you some info via private message. Best, S
  7. I didn't know when I posted last December that prolonged bed rest and deconditioning can cause POTS and other forms of OI....this is a big reason for the overlap. My illness began with dysautonomia, but overcoming my deconditioning now is a big challenge....and I've been working with a trainer for six months. Yet I am up and about again...so it has been very beneficial (if arduous...and she is very sensitively pacing with me).
  8. One easy thing that helps me tremendously is to drink 3-4 liters a day of water with electrolytes. My favorite additive is the product Nuun, but there are threads here describing what people do. The best advice I can give echoes that above: try to find doctor versed in POTS. Sylvie
  9. Remeron (an atypical antidepressants) has been highly effective at a very low dose for me: 7.5 mg taken 2X night (I will wake up at least once). Apparently it works better for insomnia at a low dose. However, I gained 12 lbs. In one month! It makes me ravenous.. It also apparently slows metabolism...for I've controlled my eating and have not lost a ounce in the past two months. I meet with my doc this week to discuss low-dose trazadone (an old-school SSRI) as a substitute.
  10. Dancer...isn't the ACTH test for low cortisol (Addisons?)...I'm wondering about testing for high cortisol (Cushing's). Just wondering if anyone here was tested and treated for that. Thanks.. S
  11. I have such surges each morning... beginning at dawn. I'm guessing it's tied to high levels of cortisol. Has anyone been tested and treated for this? Thanks-- S
  12. First, listen to Yogini! Take it seriously. It's best to be checked to make sure there is nothing cardiac to be concerned about. That being said, my severe chest pain was the first indication dysautonomia was affecting my digestive tract. It was GERD, confirmed by testing and an endoscopy. On the bright side, it's calmed down considerably since it's onset a year ago (no pain at all) and now I just take a PPI (nexium) every few days.
  13. Dear Honey Bean, Welcome. Yes, you are in a different world now, but we all share it here! I think the most important piece of advice I can give you is to know you have a new role in life -- as a medical researcher. We have a disorder that is not even well-known or dealt with among neurologists, so it is really important to gather and attempt to understand as much information as you can. It is a smart move to first go to this site. There is great information, including a physician's list, here. So again, welcome, and I hope you find the help and information you need soon! --Sylvie
  14. I'm just a sucker....I love Nuun. It would be far cheaper to use a powder, but I'm hooked on the taste, fizziness, and color. It costs @$22 for 60 tabs...worth @22 cents. I order thru Amazon. Says right on the box it enhances hydration...(that's it's value), but it gets me to drink @ 4 liters/day, which has really improved my symptoms. I use I tab per liter (1/2 suggested "dose"). Taste is subtly sweet, unnatural, but nice. Colors do not correspond...but all additives are natural. 7-8 calories, no sugar. You can carry tabs around to add to water anywhere. I sound like a commercial...sorry, I just discovered it. S
  15. Dear HFTC, I wish I could be more helpful -- but you're so welcome! --S
  • Create New...