• 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.

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  1. Insomniac

    Doctors Frustration Thread

    That is what I suspect too.
  2. Insomniac

    Doctors Frustration Thread

    I also think it is GABA. But only helps pain and sleep. I get tolerant fast.
  3. Insomniac

    Doctors Frustration Thread

    Cannabis is not a good alternative. It worsen autonomic dysfunction. I get a big improvement in pain with old fashioned Vallium, as opposed to clonex and lorazepam ,which just relaxed me, then lost effectiveness and were hard to taper off from. I don't ask for it because I am worried that...
  4. Insomniac

    Doctors in Barcelona, Spain?

    I might have to go to see Dr Gilete in Barcelona. He just rules out cervical instability and since it is a massive effort to get there, I wondered if anyone knows of a doctor over in Barcelona who has experience in dysautonomia. In the website of the Teknon hospital where Dr Gilete receives...
  5. Insomniac

    I have more sense than a team of Neurologists

    I wonder if some of their "FND" patients are misdiagnosed patients with POTS alone or misdiagnosed Ehlos Danlos with no ME/CFS. I am in a few groups of POTS patients and Ehlos Danlos patients. Many of them have neurological symptoms similar to CFS but without PEM. They are all improving on...
  6. Insomniac

    Anyone Else Find Meditation Greatly Helps Their Condition?

    No does not help me
  7. Insomniac

    Instead of ME/CFS, could some have simple schizophrenia? Its symptoms: anhedonia, blunted emotions, brain fog, apathy, social withdrawal

    Do these people have physical energy? and if not, do they have worsening of all symptoms, particularly energy after any physical exertion? The people that I know with schizophrenia are capable of lifting weights at the gym and are very physically strong. In fact one of them did go regularly to...
  8. Insomniac

    Huge improvements on cetirizine

    Cetrizine makes very little difference for me. I need to take some type of antihistamine on a regular or semi regular basis for allergies....Cetrizine helps my allergies and sleep although a full tablet of it turns me into a zombie. It just shows that your ME is very strongly connected to...
  9. Insomniac

    Why would CFS symptoms continually worsen overtime ?

    What you just said is fascinating. I think you are right. Dr Goldstein's drugs included: A batch of stuff like midodrine for low blood pressure and POTs or orthostatic intolerance symptoms. A batch of histamine lowering drugs that are now all used for MCAS . Some of them are not...
  10. Insomniac

    Nicotine, tobacco and Cfs has anyone benefited?

    There was a trend to try this many years back on one of the yahoo groups for CFS. It was via inhalers of nicoteen. I tried it and it did not help me. It lowered my blood sugar and made me want to lie down and relax a lot. It did me no harm to try and I think all CFS patients should have a go...
  11. Insomniac

    Has anyone tried this doctor in Austria?

    https://www.schnellgesund.at/post/long-covid-so-viel-mehrals-m%C3%BCde Her name is Dr Corinna Geiger. She seems to know more than my local doctors. I was just wondering if she can give more than just compression socks and tests for MCAS.
  12. Insomniac

    Dysautonomia doctors in Europe and Dr Ricardo Gil

    I know those 2 doctors. One is not practising in the dysautonomia field anymore and the other is not a good doctor. So I am guessing the list is not up to date. There is probably a change everywhere since Covid
  13. Insomniac

    Dysautonomia doctors in Europe and Dr Ricardo Gil

    Is there any doctor in Europe that follows the Bateman center in doing the Nasa Lean Test and then giving drugs for that? Also has anyone seen this doctor? https://dricardogil.com/ Dr Ricardo Gil, He mainly deals with vein type issues but mentions dysautonomia and EDS and CFS on his page. I...
  14. Insomniac

    What is the best sleep medication for CFS patients?

    There should be more than one vote allowed. I find Zolpidem and Ambien very similar. I voted Ambien but would also vote Valium if it was there because it is easier to taper off than other Benzos. I would also add specific antihistamines to the poll. The other things in the poll give me side...
  15. Insomniac

    Dr Kaufman and Dr Ruhoy Podcast

    Has anyone paid to see this podcast with Dr Kaufman ? I am wondering if it says anything new or if it just a summary of things we know. https://www.patreon.com/unraveledpod
  16. Insomniac

    Why would CFS symptoms continually worsen overtime ?

    I feel something close to that in my ME/CFS. If I eat something that triggers my bowel symptoms, my cognitive problems and CFS and general exhaustion worsen. It's not the cause, just one important extra component that worsens things a lot. I had zero bowel problems the first 3 years of illness.
  17. Insomniac

    Butcher's broom (Ruscus aculeatus) - herbal midodrine

    What dose are you taking?
  18. Insomniac

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    Sorry, I mean oral Cromolyn - not the prescription free nasal spray. https://www.mayoclinic.org/drugs-supplements/cromolyn-oral-route/description/drg-20063181 Gastrocrom it says it is called in the USA. My brain fog is made me do the mistake.
  19. Insomniac

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    I am in Israel and no doctor here will treat me for MCAS if I am not positive for the Triptase test. They won't accept that the Triptase test alone is not accurate. I can only tolerate a few antihistamines but really want to try sodium chromoglycate. Which of these online pharmacies will let me...
  20. Insomniac

    If money was no object, which doctor/clinic would you see?

    This functional designer doc service - would they prescribe stuff like Guanfacine, Ivbradine, Abilify etc.? and also believe in CFS? If they do it would be great. I also like heapsreal's idea :)
  21. Insomniac

    If money was no object, which doctor/clinic would you see?

    It's not money that is the problem. It's the travel, possibility of not recovering from severe pem after travel, the waiting list, then the possibility that I might not even be helped after it all. Putting all that aside, I would pick Dr Cheddha
  22. Insomniac

    Is "Unrefreshing Sleep" actually too refreshing?

    What does CLA stand for?
  23. Insomniac

    Extremely Severe and debilitating Muscle tightness

    I find it works less well as the years pass. I never got addicted because only took it once a week. I should not say addicting. I should say that baclofen is a bit habit forming for some people,.
  24. Insomniac

    Sleep Tracker - Anyone can recommend one?

    I want to revive this topic because maybe there are newer or better sleep trackers since 2018. I gave up finding a good sleep tracker in 2018. To complicate matters I have reversal of sleep timing - that is I fall asleep circa 6am and get up to pee a number of times. I need a sleep tracker that...
  25. Insomniac

    I get really odd reactions to certain B vitamins and cofactors

    Have you had MTHFR mutation test? I don't know what country you are in, but it should be something your state health system covers..You should not need a private gene test. MTHFR mutation is recognised by all haematologists and should by recognised by family doctors. It is a gene that means...
  26. Insomniac

    I get really odd reactions to certain B vitamins and cofactors

    I have MTHFR mutation and my brother had a stroke at my age. Every doctor tells me to take methyl folate with whatever folic acid supplement that will suit it. It doesn't matter form of folate I take, I feel bad the day after. It causes a worsening of my CFS. Same with any synthetic B...
  27. Insomniac

    Long Covid Video

    This video this doctor says that in the next few years there will be a number of trials on single therapies and they will all be uneffective because it needs a triple therapy.
  28. Insomniac

    Do benzodiazepines twice a week create addiction?

    I tried the method of just once a week lorazapam. I could feel the withdrawal already 24 hours later. Horrible. I think twice would get me addicted. I prefer diazepam, benzos with a longer half life. I prefer diazepam once every week to once every 2 weeks. Even that is too much but this...
  29. Insomniac

    Newbie- Does Hypermobility Spectrum or EDS rule out a diagnosis of CFS?

    So you say they *can* be co morbid, because both are diagnosed on a loose symptom cluster. But some illnesses with no test do rule out CFS. For example I know someone with non celiac gluten intolerance who still claims she completely recovered from "ME" after stopping gluten. With EDS and...
  30. Insomniac

    How well are you aging

    I used to be on the yahoo CFS experimental group in the early 2000's. The posters there said that people with CFS tend to look younger than their years, then have rapid aging. Now years later with all the research in hypermobility and CFS, it's been discovered that patients diagnosed with CFS...