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Rachel55

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  1. Rachel55

    OHSU Psilocybin Study?

    Thanks. I've started the D3 regimine and so far, so good.
  2. Rachel55

    Massive hair loss - cyclical

    I have developed Chronic Telogen Effluvium and have lost more than 50% of my hair now (for the third time). I suspect that cluster headache episodes and the meds are the trigger. However, the research says that chronic telogen effluvium now cycles on for 7-10 years. Talk about adding insult to injury. I'm at the end of my rope. Cluster headaches. Massive hair loss. Kidney stones that need to be removed this summer - for the third time! Frozen shoulder (which takes up to three years to resolve). Sleep disorder. Mental health issues (pulling away from relationships and isolating). Etc. etc. I know I'm not a "victim" but F*** I can't catch a break! Send help....
  3. Rachel55

    Pain down neck and into shoulders

    I have heard of a technique called "dry needling" which is when an acupuncture needle is inserted directly into a trigger point. Anyone tried this?
  4. Rachel55

    Massive hair loss - cyclical

    Wondering if anyone else has experienced this...... For the THIRD time in the last 2.5 years, I am experiencing major, major hair loss. My dermatologist thinks it is chronic Telogen Effluvium and has asked about "triggers" 3 months prior to each episode of rapid hair loss. The first time, I think the trigger was a severe disc herniation in my lower back. However, I also remember getting therapeutic botox for cluster headache around that time. The 2nd event happened three months after a cluster attack and botox. This most current hair loss episode is also three months after a cluster attack and botox. I just can't figure out if the "trigger" is the actual cluster attack itself, the sumatriptan injections I use to abort clusters, the whack of muscle-relaxants and anti-inflammatories and pain meds that I take to help with the muscle pain (things like robaxacet, naproxen, baclofen, oxys, etc etc - which actually don't help one single bit), or the botox injections, or all of the above? Has anyone else experienced major hair loss episodes? The research that I've done has suggested that chronic Telogen Effluvium may now go in growth and loss cycles for the next 7-8 years! Honestly, it is devastating. DEVASTATING. The hair loss is diffuse but very prominent at the bitemporal areas. It is not hormone related and I know this because of my blood work and also the pattern - androgen alopecia has a slow, gradual onset and a different pattern of thinning on the head. ANYONE??? Rachel
  5. Rachel55

    OHSU Psilocybin Study?

    I am looking for the dosing instructions for using psilocybin for cluster headaches. I have found a person who can supply the mushrooms but I'm scared to experiment. Desperate to use it though in an effort to avoid future attacks. I have suffered more than 25 years and enough is enough. If anyone can send me a link to the instructions, I would be forever grateful. Thank you.
  6. Rachel55

    The best place on earth to be?

    I agree that the change in weather and pressure is a trigger 100%. My clusters ALWAYS happen during tumultuous weather, whether it's July and thunderstorms or November and broody or February and cold and sunny or Spring when the temperature increases rapidly. I have never had an attack during consistently "normal" weather. I've thought about moving too! California sounds great. Toronto has crazy weather fluctuations.
  7. Does anyone else feel like the muscles of the neck and traps and shoulders are like trigger point cords that seethe with pain during attacks? It's unbearable pain for me. Sometimes I squeeze my muscles or roll around on a tennis ball until I get bruises. I dig my body into the corner of a wall and press really hard on the right spots. Am I the only one?
  8. Rachel55

    2.5 years off... but it always comes back!

    Same here. I had an almost three year remission and thought I was completely out of the woods. Then bam! 14 of them over 16-17 days. Was so upset. I thought maybe prozac had kept them away for so long?
  9. Rachel55

    Imitrex in Vials - Huge Improvement

    Where do you inject? What part of your body?
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