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ClusterBusters

heilette

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Everything posted by heilette

  1. heilette

    Smell triggers

    Anybody has trouble with smells? In the beginning of my CH it was only a few, now 3 yrs later, it is very bad!!! I'm chronic since it started. The worst one is the smell of my own stool!! But I do get past most, I wear a bended paperclip on my nose, it helps not to smell!!! The last new one is my husband's shaving cream! Tomorrow I will go and look for an odourless one!! Sometimes I feel if somebody can just cut off my smell nerve, it will be better! None of the tricks on this board have helped much!! h
  2. heilette

    Gamma Core

    David Do one uses this only on the right side of the throat? Has it something to do with the Vagus Nerve?
  3. Last night was much better, only the normal one an hour after falling asleep and the 3am one, did not activate the device during the night, but O2 worked every time!! Had only little bit of time to do some researching about gammacore, think this device is more or less the same and it is hands free, perhaps I put it on for too long at a time???? What I have noticed is that my irritable bowl syndrome symptoms are much better!!! Even if it only works for that, I will keep on using it!!!
  4. I wore the device from 10am yesterday morning, didn't really know where to put the electrodes, was busy working and didn't had the time to think, but the normal 10am one was a bid bad, so I just placed it at the back of my neck, and it helped. When the 12:30 one started I put it on again. The rest of the day I felt almost like dancing! But it was short lived! My hits are normally plus minus every 2 and half hours. The 9pm one was worse and the device made no difference. The 11pm one was bad again and I had to use O2. Lately the O2 isn't working so well anymore, but although I was hit every hour last night, which was more often than normal, the O2 plus device aborted it after 5 min every time, but I'm very sleep deprived lately, and did not stay on the O2 longer, just topped over and slept again, suppose that is why it was every hour. After a bit of anatomy study I put the electrodes now on the front of neck between the oesophagus and trachea, the N vagus is nearest to the skin there I think. But today I didn't feel like dancing again, will see how tonight goes!!
  5. I had terrible heartburn yesterday, only get it once in a while, not with acid reflux, only severe pain rising from my stomach up with my oesophagus to my jaw, always on the right side, had nothing in the house, drank a bit of lemon juice and it helped. After reading that art on Zap the wonder nerve, I remembered buying a device after I was diagnosed with CH. It is called "AdvanTeq" and give electric chocks. Back then I used it on my temples but it did zero to the CH. Wearing it since this morning, but on my neck, over the vagus nerve, and I must say there is a difference!!! My CH is terrible at the moment, was waken 4 times last night, will see how it goes tonight!!!
  6. didgens Had to bring back this to the memory. In myself I think my intestine's serotonin, through the vagus nerve plays a big role. So the gammaCore treatment sounds like it can work!! Sorry don't know how to link this threat to the other one!!
  7. heilette

    Tumor Necrosis Factor

    This viral part is scary! My assistant also has CH now! If CH is so rare, and even more so in woman, what is the chance of 2 women developing it so close after each other? Contagious??? Scary!!!!!
  8. heilette

    Odd(?) symptoms

    Had 3 episodes of Trigeminal Neuralgia on left temple, 2-3 years apart, that lasted 3 months. Never went to a doctor cause it was not so bad! Only after starting CCH 3yrs ago, on the right side, eye, molar and neck, I raelized it could have been ECH! Now everything is changing again! An "ice pick" now and then, say twice a week, on the normal side, but also 3 times CH on the other side!!! Cold running tap water over my head during the day helps, but stress at work also helps!! During the night O2 helps for first 2 but normally not for the 3rd one!! Haven't busted lately, both licorice and mushrooms give me terrible oedema, but I think its time again! Can't think why your daughter chose not to use O2, it is what keeps me alive!!!
  9. heilette

    Medical Marijuana

    b.g. Have you ever tried "Wild Dagga"(Leonotis leonurus)? In a tea, not smoking it. h
  10. heilette

    Need every single persons help

    Sorry must be just an ad when I go to your blog!
  11. heilette

    Need every single persons help

    CHS On your blog there is something, Live Vibrantly, have you tried it? h
  12. heilette

    Serotonin

    didgens SSRI=m-vits=RC seeds=licorice. I may be wrong!
  13. heilette

    Medical Marijuana

    Thanks Ricardo for this!!!
  14. heilette

    Tinnitus and Clusters

    Yes, but not like a high pitch noise, like my husband has, the Dr told him if it sounds like a sun beetle, they are a "protected" species and can not be killed!! (treated) The ones that sound more like the ocean can be treated! Mine is my heart throbbing in my ear!! It can wake me up at night even before a CH starts, but then I know it is coming! It started long before I even knew I had CH, always thought it was sinusitis. But it doesn't always happen with a CH!
  15. heilette

    A New Minimally Invasive Technique

    But the CH is not gone!! Took a big change on the shrooms during the past summer, cause I've got Raynaud's phenononym, (which only happens during winter times) Think I used it 6 times! But in the end like Dan, I was scared of it! It did make a difference in the kip, but it still was 6-8 a day, at least the suicide was out of the pain again. Now it is back to #10 again, and it is winter! But tomorrow I'm going to do shrooms again!!! Hope my fingers survive it!!
  16. heilette

    A New Minimally Invasive Technique

    Don't notice anything different after that op until now. The feeling in my teeth are back and I could open my mouth normally after 6 weeks!
  17. heilette

    Need help - Old tricks not working anymore

    If everything fails I put my head under cold running tap water or my car's AC until my head is almost frozen, it helps for me.
  18. heilette

    Need help - Old tricks not working anymore

    Go to "Omharmonics", and listen to that music, for me the RC and mushrooms did not work. This is another kind of "busting". It is helping me!!! I am a different person now!! I even had sex with my husband tonight!!
  19. heilette

    A New Minimally Invasive Technique

    Dan No I don't know of anybody. Did not go and search for a reply of anybody who was previously diagnosed with CH and out of desperation ended up there. My personal opinion is that it might perhaps help for real migraines. But most doctors don't have a clue of the difference between real migraine and CH. I did go for acupuncture last week. She placed some small pins in my ear on the side of the CH, every time a CH starts I press on them and it seems to help? But got new glasses on Wednesday, and yesterday was a PF day!! it was so wonderful!! This morning was ok but everything started again!!! PF days for us soon! h
  20. heilette

    A New Minimally Invasive Technique

    hipshot I had that operation in September 2012, Dr Shevel did it himself!!! After a month there was noooo relieve, not for even one day!! He asked me to go back and did two arteries again, all I had after that was two numb teeth and I could almost ate only bananas and soup cause I couldn't open my mouth for a month! It helped zero for me!!! Sorry I saw this so late!! Did you had the op yet? h
  21. heilette

    headache

    JBF Yes I do also, and I start yawning! I try to eat at least every 3 hrs something small, but it must contain animal protein, then it helps a bit h
  22. heilette

    Short term memory loss / blackout?

    Used the chair I'm always sitting on, doing everything, to show my daughter some back exercises, going back to "my place", sat down and landed on my ass on the floor!! Has anybody heard of pulling the chair underneath one's own ass!!! Ha-Ha We all couldn't stop laughing!! I think it was short term memory loss!!!
  23. heilette

    Short term memory loss / blackout?

    Short term memory loss? Isn't it called "Alzheimer's" too? Now-a-days I must make an immediate note of something, otherwise I forget!! Wanted to answer on this but I forgot ;D h
  24. heilette

    Frustrated....advice needed please

    I am frustrated tooo!! Me having it, in the position to diagnose many patients, they don't believe me!!! If you can find totally nothing wrong with a patients teeth, and out of their history, you diagnose CH, they don't believe me! I know, I extracted my own tooth way back, thought it was the cause of my pain, before I was diagnosed!! Yes I am a dentist! I see so many woman, after menopause, which I believe has CH, men like always, are not so easy to talk to(me being a woman), they don't open up much!! I think they think they are pissy's(not brave) complaining about pain nobody will understand, or believe! But still they would rather go back to their medical doctor, who doesn't know anything, or know something, but knowing nothing really works, will give the patient anything, to see if it will perhaps help???? I was so lucky!!! Haven't been on much of all the medications all you've been on!! Thought my neurologist was an asshole, but actually he was an angel! He directed me to clusterheadaches, and then I found clusterbusters!! These are not headaches!! It is more like Trigeminal Neuralgia! Which the doctors treat with anti-epileptics!!! But it is not that either!! Hopefully pain free days to all!! h
  25. heilette

    How did it all start for you ?

    didgens our replies was sent at the same moment it seems! Many women uses licorice for hot flashes!
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