• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. B

    Just got a prescription for Memantine - anyone tried it?

    I think it helps control it to some degree, but I can't double my usual noon dose of 100 mg because it makes me too sleepy. (I also take 100 mg in a.m. and 100 mg at bedtime.)
  2. B

    Just got a prescription for Memantine - anyone tried it?

    I tried it when I was having a period of brain/CNS hyperactivity and it gave me too many side effects. I hope you have better luck. I'm currently having enhanced symptoms and I'm trying to double my dose of Neurontin and trying Celebrex instead of Advil or relying on triptan migraine drug...
  3. B

    asthma and dysautonomia

    I'm not familiar with reactive airway dysfunction; although it sounds like I may have it. I'll have to do some reading about that. Thanks! No, I haven't been tested for chlamydia pheumonia. When I see my doctor next, I'll ask him about it. Thanks so much Athene, Willow and Laurel! My...
  4. B

    asthma and dysautonomia

    I had a sudden onset of dysautonomia symptoms during my menstrual cycle this week and noticed that in addition to the "air hunger" feeling after standing longer than my body could tolerate, I experienced hoarseness and an asthmatic cough. I'm still having those symptoms this morning after a...
  5. B

    Excitotoxicity, possible cause / solution?

    I found GABA at night helped calm some "wired but tired" feelings and I take 3 doses of gabapentin during the day. I take lots of magnesium by mouth, but have resisted the injections so far. I avoid all sources of glutamate, glutamine, gluta-anything! I've also heard from Dr. Paul...
  6. B

    Eyes and Overload Phenomena

    I am having a flare of exess brain activity (neuro excitoxicity is the term I've seen used by most) and I am trying to quiet things down so I can function and feel better. First of all, overstimulation of my brain feels like everything is burning and tight inside my head, I get woozy, off...
  7. B

    Supine position makes me feel worse, anyone else?

    Emootje, I cannot lie flat for more than a few moments because my dysautonomia (dysfunctional autonomic nervous system) becomes worse and my wooziness increases. I use a wedge pillow to sleep. You may want to try resting in a reclining position and see if your nausea stays the same or...
  8. B

    Rich Vank's Simplified Methylation Protocol Poll

    I have experienced major improvment on this protocol, even though my Vitamin Diagnostics blood tests showed minor improvment. Thanks again Rich for your undying commitment to us! I have been on the protocol (with some variations along the way) for nearly 2 years. I know Rich has recommended...
  9. B

    Why wrinkled fingers and toes?

    Periodically, my finger tips become wrinkled and have no bounce back when pressure is applied. My toes do the same thing. Generally, my hands and feet feel like they don't have enough fluid and become wrinkled and very dry. Nothing seems to help. If I increase my already very high volume...
  10. B

    Article: Post-Exertional Malaise: Perception and Reality By Jennifer M. Spotila, J.D

    When I click on the article link, I cannot view it entirely. Is this a browser issue? How can I get this article in another format? Many thanks, Bayly
  11. B

    Woozy and feelings of movement after activity

    Mithriel: Thanks for the info! Luckily, I haven't been severely nauseated from this symptom since going Gluten Free. Danib: Dramamine never helped me with the sick feeling, but you never know until you try! Wciarci: I did have a Vitamin D AND magnesium deficiency. I have corrected the...
  12. B

    Woozy and feelings of movement after activity

    Hi Brown-eyed Girl: I did not have any gut issues with gluten, just neurological ones - mostly ataxia...loss of balance, acute motion sickness. According to some of the gluten researchers, the anti-bodies to gluten can cause atrophy of the cerebellum. I have had MRIs where atrophy shows up on...
  13. B

    Woozy and feelings of movement after activity

    Is feeling woozy (not spinning, just internal movement...swaying, rocking) AFTER stopping walking, just going about daily living something common for CFS? I am wondering if my cerebellum is permanently damaged from gluten OR if this is something I can get rid of as I continue to improve from...
  14. B

    Searching for Dr, live in Louisville, KY

    I'm willing to travel by car to find someone who can guide me through the complexities of my healing journey from CFS. Searching for suggestions...Many thanks,
  15. B

    Constant nerve tingling ,hands legs ,head..

    I am trying Neurontin and Petadolex (butterbur) plus low glutamate/aspartate diet. I'm not sure what is working or if my symptoms calmed down some on their own, but the tingling, tightening and numbing in my head has become mild to moderate vs. severe.