well at least I m not alone I started a cycle three weeks ago non stop every... — Cluster Headaches Exposed

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  • It's all I use. My LPM is only 13 but I jerk the mask off and just stick the tube in my mouth.

  • I used 15LPM and helped out after 20mnt or so

  • I had to get a 25lpm regulator for myself. At my worst I could empty the 3L reservoir bag at a 25lpm flow rate 3/4's of the way through a breathe. The trick is to make sure your full breathes are 100% O2, even if you have to hold your breathe for a sec for the bag to fill up a little more. Full, deep breathes back to back to back. For me it was till the point of almost giving myself a head-rush and passing out.

well at least I m not alone I started a cycle three weeks ago non stop every... — Cluster Headaches Exposed

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  • exactly? I know I use 15 lpm high flow, and the mask bothers me, so I just suck in through this special mouth peace. Problem is I fight it even with the 02 for 10-20 min, but it's a hell of lot better than fighting it for 60-120 minutes or more.-------on bad days I'll wake several times to battle it with 02, but since there are no injections availabel to me, it's all I got

  • It's all I use. My LPM is only 13 but I jerk the mask off and just stick the tube in my mouth.

  • I used 15LPM and helped out after 20mnt or so

I was having a cluster headache last night and I had a thought Does any... — Cluster Headaches Exposed

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  • I never had any problem with my ears. I fly frequently (of course not during clusterhead season, which I am terrified will come any day now, since mine usually come sometime between now and November, and sometimes remain till january or later).

  • The cause of the pain is the Trigeminal nerve being crushed by the swelling of blood vessels, we don't know why they swell, but we do know we have a deformed hypothalamus and that our serotonin molecules are missing one "leg".

    Sumitriptan, or Imitrex mimics the serotonin. The closest thing to Sumitriptan is a group of drugs called Triptamines, or psychedelics.

    Google "Cluster Headache Mushroom" and "Cluster Headache LSD" there is a lot of information here.

    The advantage of triptamines is they can STOP THE WHOLE CYCLE DEAD! and then keep you free of cycles by dosing every 6 months. THIS IS REAL PEOPLE AND IT WORKS. for more info see

    www.clusterbusters.com FREE info on how to do it yourself, or message me.

  • i have eposodic clusters been pf for 2 whole years ..... always suffer badly with my ears when flying

I was having a cluster headache last night and I had a thought Does any... — Cluster Headaches Exposed

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  • I never had any problem with my ears. I fly frequently (of course not during clusterhead season, which I am terrified will come any day now, since mine usually come sometime between now and November, and sometimes remain till january or later).

  • The cause of the pain is the Trigeminal nerve being crushed by the swelling of blood vessels, we don't know why they swell, but we do know we have a deformed hypothalamus and that our serotonin molecules are missing one "leg".

    Sumitriptan, or Imitrex mimics the serotonin. The closest thing to Sumitriptan is a group of drugs called Triptamines, or psychedelics.

    Google "Cluster Headache Mushroom" and "Cluster Headache LSD" there is a lot of information here.

    The advantage of triptamines is they can STOP THE WHOLE CYCLE DEAD! and then keep you free of cycles by dosing every 6 months. THIS IS REAL PEOPLE AND IT WORKS. for more info see

    www.clusterbusters.com FREE info on how to do it yourself, or message me.

  • i have eposodic clusters been pf for 2 whole years ..... always suffer badly with my ears when flying

hi everyone i have had episodic cluster headaches for 12 years now and have... — Cluster Headaches Exposed

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  • Hi Lee - Check out www.clusterbusters.com all the info you need on treating CH with lsd and psilocybin.

  • I've had mine for about 8-9 years, and last season was the longest I've ever had them (the longest prior to last season was 3 months)----see my notes, perhaps you can compare and contrast my 7 month bout in 2009 ind yours; but as far as I have read, they arn't considered chronic if you have a 1 or 2 month break between bouts: http://www.facebook.com/ManuelLaraofCalifornia#!/note.php?note_id=85336996986

hi everyone i have had episodic cluster headaches for 12 years now and have... — Cluster Headaches Exposed

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  • Hi Lee - Check out www.clusterbusters.com all the info you need on treating CH with lsd and psilocybin.

  • I've had mine for about 8-9 years, and last season was the longest I've ever had them (the longest prior to last season was 3 months)----see my notes, perhaps you can compare and contrast my 7 month bout in 2009 ind yours; but as far as I have read, they arn't considered chronic if you have a 1 or 2 month break between bouts: http://www.facebook.com/ManuelLaraofCalifornia#!/note.php?note_id=85336996986

i m wondering if anyone else finds their headache gets worse when the air... — New Daily Persistent Headache

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  • as im 32 weeks pregnant now they seem to be slipping back to the old days, im currently on dosulepin 75mg at nite, which was helping a little. I never have or had a day on no pain....bending seems to make it worse to

  • its amazing how small things contribute greatly to the pain. glad the pregnancy hasnt made the headaches too bad.

  • lets hope that some one is working on how to cure us...

Does anyone take any vitamin supplements in addition to their prescribed... — New Daily Persistent Headache

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  • tried ALL of that stuff, did not help at all.

  • Those things didn't help for me either...the biggest thing that worked for me was exercising every day and waking up/going to bed at the same time every night. Hope that might help you!

  • what kind of exercise? I was in a good phase for a while (well a shitty day for others but good days for me)..... I made the mistake of doing a surgery, where I had Radio Frequency Pellet inserted into my face to burn off the Sphenopalatine Ganglion nerve root. It typically has a 95% success rate for atypical headaches. But for me it has put me into an extreme state of pain now for 3 months. Could be dealing with all this extra pain for up to 9 months more until nerve root grows back. Sometimes exercise helps and sometimes it backfires and makes things worse. Can you tell me what your routine was and how you would deal if pain was already really intense? and did you just wake up one day and it was gone?

I was diagnosed with NDPH over 2 years ago I m one of the people who have a... — New Daily Persistent Headache

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  • I've been trying med combinations for 2 years. The list is crazy. It seems like Darvocet & Midrin are working best for me. But I'm still having more bad days than good days. Think I might ask about Perocet, I haven't tried that one. Irina~! what are you taking now?

  • I've had this for almost 4 years, but was trying to take of this the natural way, herbs, accupancture, etc. Nothing worked, so about 4 month ago I went to a Nuero and he put me on Cymbalta, SEroquel and Ativan - not working yet. I've tried Elavil - nothing. So I pretty much get no relief and have more bad days than good days too - Percoset is a narcotic, so I try to do with Tramadol. Motrin doesn't help. I am going to try hypnosis next (LOL), just don't know what to do about this, it's so frustrating and really really affects my life, as I am sure you can imagie.

    Where do you live? I am in California.

  • I'm in California too. I've done herbs, acupuncture, hypnosis, massage, etc. too. Today I'm missing another day of work. I'm lucky that my employer is pretty understanding, but it scares me because of my insurance. I don't really want to do narcotics either. I try to minimize all the meds I take, I don't want to get into a rebound cycle.

i would like to wish all ch sufferers and their supporters a peacfull restfull... — Cluster Headaches Exposed

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  • thank you manuel

  • thankyou manuel pray hard lol hard nice 2 half hours ov best last night went out 4 farthers day with my dad bro nd girlfriend wasnt long b4 the band started to play in my head my fault i shoundnt ov had a drink i know it can trigger one

  • Yeah, I have played that game of Russian roulette with drink many a time. I never win, it seems like instead of the gun having one bullet, it has all but one space filled with bullets, so if I'm lucky when I spin the barrel, then on rare occasions I can enjoy a drink---but how stupid must I be to play that game.

i would like to wish all ch sufferers and their supporters a peacfull restfull... — Cluster Headaches Exposed

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  • thank you manuel

  • thankyou manuel pray hard lol hard nice 2 half hours ov best last night went out 4 farthers day with my dad bro nd girlfriend wasnt long b4 the band started to play in my head my fault i shoundnt ov had a drink i know it can trigger one

  • Yeah, I have played that game of Russian roulette with drink many a time. I never win, it seems like instead of the gun having one bullet, it has all but one space filled with bullets, so if I'm lucky when I spin the barrel, then on rare occasions I can enjoy a drink---but how stupid must I be to play that game.

Finally Gone I suffered for several years at least 8 or 9 I had run into a... — Cluster Headaches Exposed

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  • Can you tell us more about how you improved circulation?

  • I don't know. Sounds like someone trying to sell something to me. You know what they say: If it's too good to be true, then it probably is. And if this were true, then we would have heard many more such stories of circulation and people totally cured from CH. But in fact we have not heard such stories--only a handful of people, and those can be classified as special cases. But special cases are rare and don't help the majority of people, so, sorry bro but I'm just not sold on this story.

Finally Gone I suffered for several years at least 8 or 9 I had run into a... — Cluster Headaches Exposed

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  • No-one properly understands it yet. It's more complicated than just an isolated trigeminal nerve inflammation. While I understand everyone's scepticism I think it’s important for everyone to keep discussing their experiences with the hope that more correlations can be made and the beast better understood. It is a fact that reduced blood-flow has been observed in CH patients behind the eye on the affected side. It is known that nitroglycerin which affects circulation induces CH episodes in sufferers and other circulation boosting substances like cayenne pepper or hot showers can help with the pain in some people. From my own experience (when I was hooked up to a pulse oximeter during the nights of CH) immediately before an attack my blood pressure drops very low (systolic less than 90), my heart rate falls below 50 beats per min and my breathing almost stops, consequently my blood oxygen levels drop very low (the pulse oximeter registers a danger signal). Immediately after this I am woken by the CH pain beginning. I’m not saying any of this means that there is any causative effect from circulation issues (having a wonky hypothalamus tends to disrupt every function and it’s most likely an effect rather than a cause) but it might form part of the picture. Obviously though anyone who genuinely suffers from these things and has any insight would gladly share without wanting any payment.

  • I feel your pain Kathleen! I thought I was in a remission with three whole nights off til last night (boo), but I'm grateful for the few nights of sleep. We just have to hang in there and remember just how strong we are!

  • I hear you Kathleen. That it does. I wish we had a cure. Maybe one day.

My daughter had her first acupuncture treatment today for NDPH It brought the... — New Daily Persistent Headache

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  • Definately give it a try. Although we had high expectations to bring the pain to 0, we'll settle for more energy. She also was just diagnosed with binocular vision problems so will be seeing a specialist for this. We're trying to resolve every issue that may feed into this pain, or developed because of it, to lower it as far as we can.

  • Your daughter is 13? how long has she had the headache?

  • It just started on December 16 . . . fairly recent compared to so many others here! It has been devastating and life altering! I am in constant admiration of all of those, including Jess, who get out there and try to live every day. I'm open to any advice on how to support this!

I ve just past my 3 year mark on my headaches I ve head it 24 7 I ve been to... — New Daily Persistent Headache

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  • Keep looking and looking! Our first neuro insisted my daughter's pain was from stress. He would not even recommend over the counter treatment for her unless she agreed to see the psych dept. Another neuro recommended knocking her out with Benedryl when she had too much pain. I've learned to move on immediately if they just don't get it because there are docs out there that do!

  • What kind of 'underlying condition' is the doctor thinking?

  • One neuro diagnosed me with NDPH right away, the other said that it's simple Tension headache due to stress and anxiety. My TMJ/TMD doc says the NDPH diagnoses is bullm, it just means that the doc doesn't know what kind of headache we have. Good luck!! I think there is always an underlying condition, just hard to find what it is sometimes.

very disappointing trip to Tufts University Craniofacial Pain Center — New Daily Persistent Headache

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  • Oh, so sorry to hear this. When you're up to it, I'd be interested in why it was disappointing. I have friends saying I should look into this.

  • Well, my daughter has had NDPH for almost four years. The past year, she has had more TMJ issues. We went for evaluation of that and whether it and orthodontics had any effect on her headache... They had evaluated her medical records before we made the trip and 'accepted her' for an appointment. Their conclusion was that she has a chronic headache and should be at the mall instead of the hospital...delivered in an angry fashion. Never answered our questions. Just weird and very disappointing.

My name is John I am 32 years old I have experienced literally constant... — New Daily Persistent Headache

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  • How do you cope with this? I am having a hard time with this now and I've only had it for 4 years.

  • The first 5 years were very tough for me and my family. Over time I developed a high tolerance for severe pain because I had no other choice. The most important technique I use is to "detach" from the pain emotionally as much as possible. I went on to play soccer and football. In 1998 at MHNI I learned that my condition was most likely permanent and once I accepted this I switched focus from finding a cure to managing the pain. I do not take narcotic pain relievers because they have been proven to cause inflammation to parts of the brain that process pain and eventually make the pain level worse and less tolerable. Also I have developed addictions to narcotics and muscle relaxants and that is a whole other problem you do not want. I also learned about "rebound" headaches. Taking even a non prescription pain reliever more than 3 times a week has been proven to cause "rebound" headaches (Dr. Joel Saper). I recently tried Gabapentin with slightly reduced pain but increased weight gain so I discontinued because I am overweight already. Topiramate caused too many cognitive problems and muscle aches with increased head pain. One again I am back to No meds except 400mg ibuprofen 3 times a week as needed or extra strength alka seltzer. It has extra strength aspirin and the sodium bicarbonate balances my PH which can reduce pain. Hot shower or bath, massage, and avoid triggers like caffeine, sugar, nitrates, preservatives, artificial sweeteners (aspartame, acesulfame potassium etc). Be on a regular schedule for sleep and food. Too much or too little sleep is a trigger for increased pain. I will admit that even with my positive attitude I am still "worn down" by my pain...I simply don't feel well most of the time and it does take a toll on a person. Good luck.

  • Also look out for foods with tyramine, these always make my pain worse. Aged cheese, canned tuna, processed meats, yogurt, bananas etc.

Had been on a pain cycle for 5 6 months since July and the best preventative... — Cluster Headaches Exposed

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  • I never tried magnesium, and a little diarrhea will be good for the diet. I'll try that next time around (luckily in remission for the time being, but last time was a good 5-6 months of hell).

  • If you take a magnesium mixed with calcium, it helps the mag absorption in your body and will also help balance out your bowel! You'll get the same efficacy of the mag without so much of the diarrhea! Been there!!

Had been on a pain cycle for 5 6 months since July and the best preventative... — Cluster Headaches Exposed

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  • I never tried magnesium, and a little diarrhea will be good for the diet. I'll try that next time around (luckily in remission for the time being, but last time was a good 5-6 months of hell).

  • If you take a magnesium mixed with calcium, it helps the mag absorption in your body and will also help balance out your bowel! You'll get the same efficacy of the mag without so much of the diarrhea! Been there!!

To any of you who have not tried high flow oxygen 10 15 liters per minute at... — Cluster Headaches Exposed

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  • my daughter is under therapie now , she afraid she will lose me to .she lost her mum 3 years agouw

  • i now , the only painrelieve is oxigen ,vorget al other medication they dont work ,and mis up her liver .what coutry do you live ,i get email from around the world .i pray 4 her to get better soon ,my god have mercy on her

  • send symthoms ,how long you have ch what time off the year they come (is it every year).how mini weeks you nomaly have them , everything you can tel me

To any of you who have not tried high flow oxygen 10 15 liters per minute at... — Cluster Headaches Exposed

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  • my daughter is under therapie now , she afraid she will lose me to .she lost her mum 3 years agouw

  • i now , the only painrelieve is oxigen ,vorget al other medication they dont work ,and mis up her liver .what coutry do you live ,i get email from around the world .i pray 4 her to get better soon ,my god have mercy on her

  • send symthoms ,how long you have ch what time off the year they come (is it every year).how mini weeks you nomaly have them , everything you can tel me