• 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. Malea

    Is methylfolate absorbed transdermally?

    Question already in title, does anyone know this?
  2. Malea

    Does Palmitoylethanolamid (PEA) works transdermally?

    Thanks to you two! i think that it exists as topical, is a good sign. nerd, i found this paper: https://royalsocietypublishing.org/doi/10.1098/rstb.2011.0391?fbclid=IwAR1XSW5sNmq972NrG-CnvPARXOAOCwBNyCpaFw2Sdd1sItlPHolDSOUJOrQ& i‘m experience profound help from baclofen and think it is due...
  3. Malea

    Does Palmitoylethanolamid (PEA) works transdermally?

    With PEA from palm oil, does someone knows if it could work transdermally?
  4. Malea

    Rectal medication (contains alcohol) switching to oral

    Thank you for your answer. My chaotic text probably didn’t make it clear, but I‘m specifically looking for advice/knowdledge on rectal vs. oral medication. I can’t seem to find anything about it in the www
  5. Malea

    Rectal medication (contains alcohol) switching to oral

    For a variety of reasons I‘ve been forced to take the rectal version of diazepam since February. It contains alcohol. I‘m highly reactive to anything, however for a bit of time this worked much better than orally. I now have to transfer from the rectal version with alcohol to the oral...
  6. Malea

    Autoantibodies and ANAs

    For AAI I was diagnosed via a rotational CT. For CCI. I‘m still not officially diagnosed. To this point I‘m only clinically diagnosed from symptoms and reaction to traction. I can’t do an upright mri. I use the aspen vista and a soft collar.
  7. Malea

    Cervical Collar for car journeys and temporary relief at home. What do you recommend?

    Oh wow, you're the first other person I hear of that mentions significant lower pulse when wearing a collar! When I still could be upright without a collar, I measured it and standing was over 10bpm lower with a soft collar on back than. I never measured the difference with a hard collar...
  8. Malea

    A symptom I didn't tell my doctor but should have: phantom smells

    Phantom smells are also associated with csf-leaks.
  9. Malea

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    @JenB Would that probably mean that even when someone is underweight from malnutrition and has immense muscle loss from being bedridden, there would be no instability just from that? That there *has* to be ligament laxity?
  10. Malea

    Autoantibodies and ANAs

    I had some change in diagnostic workup in the meantime, so I‘m not so much looking into autoimmunity for my symptoms anymore. I‘ve been diagnosed with Atlantoaxial Instability and suspected Craniocervical Instability and my POTS got massively better when starting to wear a neck brace. (I got...
  11. Malea

    Questions About CCI and Imaging Report Results!

    In case there weren‘t any rotational images done with your upright mri, it could make sense to have some done (e.g. rotational ct) to rule out Atlantoaxial instability.
  12. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    Oh god I just realized this thread was derailing again. Sorry @mattie I have big problems cognitively to realize in which thread I am because every thread title around the topic has „CCI“ in it. 🤯
  13. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    No official diagnosis yet. Dr Bolognese suspects cci+cranial settling. I havn‘t heard back from Dr Gilete yet.
  14. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    Strangle feeling here, too, everytime after being upright. For me it seems to be because of muscle cramping at the throat-area. High-dose magnesium helps a bit.
  15. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    Okay, thanks. I think he doesn’t do any measurements and images with the halo so this would yet again show only clinically if the vertical CCI diagnosis is correct 😑
  16. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    @Yuno Do you mean the halo trial? Or does he perform real Invasive Cervical Traction like Dr Bolognese does? 🤔
  17. Malea

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Has anyone of you already understood what is happening exactly in vertical instability? I‘m totally confused what exactly/ at which place something is moving downward there. Because the skull sits on c1... so it can‘t just go down, right? So is it c1 that is going down, together with the...
  18. Malea

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    As far as I know Dr B is requiring a lumbar mri now additionally. (But better mail him.)
  19. Malea

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Thanks for clarifying @jeff_w !!
  20. Malea

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Hi @jeff_w Do I get this right? Rotational Instability would show up on rotational CT. Horizontal Instability would show up on upright mri with flex/ext. Vertical Instability would only show up with Invasive Cervical Traction. And manual traction can help all three kind of instabilities. And...
  21. Malea

    How is the video conference with Dr Bolognese structured?

    Ok I had it now and can resume a bit. He didn’t ask for the illness history in detail or something like that. He did ask if there were connections between the accidents I had in life and beginning of symptoms. He also specifically asked for dysautonomia/mcas/EDS symptoms and their severeness...
  22. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    What I wondered and I hope it isn’t inappropriate at this point: Are people who‘s spines are fully fused are still allowed to drive vehicles? Because the movement is so limited. 🤔
  23. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    Congratulations @Julia_S !! This is so great to hear.
  24. Malea

    How is the video conference with Dr Bolognese structured?

    To the people who already had a videoconference with Dr Bolognese: how was it structured? Does he wants to know stuff like illness history... or does he just goes through the images and explains what he sees?
  25. Malea

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    A thought: Something came to my eye regarding this image for the first time. From reading on the fb groups in the last weeks I learned that a lot of us have pannus formations. (It’s the white thing above the odontoid) The pannus formation can compress the brainstem, which I think I can see in...
  26. Malea

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    There are several measurements done for CCI, @Hip made some great posts about this in the past few weeks. It is also explained here: https://www.instabile-halswirbelsaeule.de/angles-which-should-be-measured/
  27. Malea

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yes (and neutral) You can ask, but to be fully diagnosed he generally wants everything. The rotational stuff is for AAI. The flexion/extension is for the different (partly translational) CCI-measurements (CXA, BAI, Grabbs Oakes) Yes, if you order that, you will get a report with diagnoses.
  28. Malea

    Tracking CCI / AAI MRI & Treatment outcomes

    Really helpful to know! @mattie , I would be very interested, if you would be comfortable with sharing, if in your case it was mainly the translationsl BAI that was abnormal before surgery or the CXA (and maybe Grabbs Oakes), too.
  29. Malea

    EDS-expert for severe GI-problems

    Thanks a lot @kangaSue , from her, too. This chronic intestinal ischemia sounds really interesting- for myself, too. I get very hurtful cramping when my tummy isn’t kept constantly superwarm and digestion than just stops. I often thought this could be a kind of blood flow thing. Will look into...
  30. Malea

    EDS-expert for severe GI-problems

    I have a question for a close friend who is in urgent need of help. She has myopathic EDS, dysautonomia, ptose of stomach and colon, CCI/AAI and her jugular veins seem to be compressed (they are visibly thick and swollen). Since years she can’t really eat and drink anymore because of extreme...