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CarAB's Achievements


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  1. There are many studies that have been done and it has been effective for some. But like anything what works for one might not work for the next. I don't think it's a hoax, it stimulates the vagus nerve. I was told by my neuro that at the most recent headache conference in the US gammacore was talked about in detail about treatment for CH and they were waiting for FDA approval in the US, but Canada headache specialists were encouraged to try it on patients not responding to treatment. I was picked to try it and unfortunately it didn't help but I was optimistic. The spg nerve block has been move effective. Doesn't make them go away, I still get the attacks just reduces the pain level. (That's inserting lidocaine deep in the back of your nose with a thin Tube and having it absorb over 30 minutes) It costs $40 for 10% sterile nasal compound lidocaine for 30 days and a pain clinic charges $100 per spg block so cost effective to have your neuro teach you to do it at home and it's very easy.
  2. I have the gammacore, as far as I know still not available in the US. I'm in Canada. It didn't work for me and I used it diligently for over a month. It was $750 (ouch and 100% out of pocket and private insurance won't touch it) my device is not empty and still has 150 doses left and just sitting in the box now. I give myself SPG nerve blocks at home with 10% lidocaine every 3 days. Day I do it attacks aren't as bad, we just switched to 10% from 5% a few days ago and the 10% is a lot better. Makes the attacks so I only need oxygen for about 20 hrs which is huge for me. I have had occipital nerve blocks. Found you need both sides done, i only had decreased frequency for about 4 days after but was told in severe cases it works to redo the block every 3 days then every week then every 2 week to get on top of it.
  3. Thank you for taking so much of your time to help me. I appreciate it more than you know. I truly appreciate the links and info you provided. Will let you know how they work.
  4. I haven't upgraded my o2. My regulator only goes to 15lpm and I use 15lpm. I use a non rebreather mask and tape the little holes on the sides so no air escapes but it's not the best. I have a good medical team however I live in Alberta, Canada and there isn't many with clusters here, let alone refractory CCH so it's hard. My one doc did do a study on SUNCT and pituitary andenonas https://www.ncbi.nlm.nih.gov/m/pubmed/23197348/ and he scans all cluster patients and he says a lot of treatment resistant cases have even a small microandenoma and removal helps, but surgeons don't wanna take them out if hormone levels are good. He has removed 2 microadenomas in CCH which resolved symptoms. But getting a ENT and neurosurgeon to do it is hard. When I went in it was on my chart I had SUNCT to get them to do it, which they backed out anyways. (Canada has Free medical so doctors have to agree, no out of pocket and long wait lists and your at your will if they say yes or no) it was my doc that told me to check out this forum after I was told to source and try MM. When it didn't work they had a patient who was successful talk to me and go over how much and going off suma and topamax and used them as a coach to try and get these to stop but no luck. You usually don't get a doc pushing you to do that. Another patient I talk to mentioned the forum if I wanted to fly to the US with her to a conference (??) so I am new to this forum. Not to clusters but new here.
  5. O2 alone used to work like magic, as time went on it became less effective. It still has absorbed attacked if caught early but not like it used to.
  6. I only get relief if I use both O2 and sumatriptan injections. Have to catch it fast. 80% of the time that works, 10% of the time redosing with sumatriptan will work still on O2 and other 10% I end up literally trying to make myself stoned so I can breath thru it and stop smashing my head on the corner of my bed. Sounds dramatic I know. I need both o2 and inject suma for relief. I've tried over a dozen meds, nerve blocks, I have a 700$ gammacore that's being used as a paper weight. I have done indomethacin, anti inflammatory that's hard on the guts. They had me do it for 3 weeks. Maybe not long enough? Only other thing is I have trigeminal neuralgia on the same side as clusters. I would still like that pituitary tumour removed, how do they know it's not causing my clusters. It's on the right lobe, I have right sides clusters and heck they had me sleeping but guess I'm not a doctor. I will look into the D3. I haven't heard of it. I take 30,000 Iu of vit D and vit K1 and vit k2 but I'll read the protocol. Thank you
  7. Thank you for finding that information. I'm a 30 year old female of average weight and even with multiple CH attacks a day I could still take my son to hockey practice. Now I can't drive there. First a pituitary tumour (told that was the cause of my CH, was sedated and tubed, then when I woke up told they didn't do the surgery and don't know if they were right and will see if it grows..... Yah imagine my disappointment thinking they found the cause) Then get narcolepsy symptoms.... Mushrooms don't work for me, now I'm a PTA mom trying ANYTHING to keep me awake and get rid of my pain. I'm messed up like a soup sandwich now trying to cope.
  8. I did the first part of the sleep study and I don't have sleep apnea. Its the sleep latency test (?) I'm waiting for. I've fallen asleep Talking on the phone thinking I was just gonna close my eyes while talking.
  9. Does anyone have clusters and narcolepsy or another sleep disorder? Im not responding to treatments, I've been refractory to treatment and now I'm having sleep paralysis and hallucinations and can't control falling asleep at odd times. Neuro said its narcolepsy until proven otherwise while I wait for sleep study but seems odd to be cursed with both. Wondering if sleep disorders and clusters are a common thing. But I do know anything I try doesn't work and frustrating and I can never understand why. Only thing that helps is sometimes is sumatriptan injections and 02 together.
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