john2000

thanks, great info,

I think my problem is , that I can't image the "pain" ,when I don't have it anymore. I know my CH hurts when I have it, but I soon as it's gone, I can't really remember the pain itself. I just remember the experience. I think that I have to write down the pain level while I have it, otherwise it will be always be like 5 or 6

Thanks jon, I was wondering, Do you think your pain tolerance is higher due to CH pain? I don't think my pain tolerance is higher. When I hit my toe on a table leg, I would still curse and be in pain as it still hurts like hell . But when I'm in pain other then CH pain I can easily compere it,to how strong it is in relation to CH pain .

Could someone who has both CH and Migraine H. describe Migraine headache pain ? Someone who has Migraine H. once told me, it was similar to headache that you feel when you have a heatstroke.He couldn't give any other definition. Thank you ,

There are no concentrators over 10LPM for home use. What they do is ,run them in series , at the same LPM. If you need 16LPM , they would set them up at 8 and 8 ALso yours must be 10LPM, I dont think it goes over 10LPM even if you can set it up higher then 10 As others have said, you are getting less then 100%, with older con. it is probably at around 90%, you can find out in specs online At least get a mask that has flaps on both sides and keep it really tight to your face , if you have that standard soft plastic mask. If you have one hole opened , you are getting only about 70% with 100% O2 and with con. 60%. Or get a CH mask to reduce mixing with air and to achieve the highest possible concentration.

Hi, I want to keep a journal with all kinds of info about cycles,vitamins and pain level. In regards to pain level on KIP The more I think about it , the more difficult it is for me to objectify assess the pain level.Here is why. When abortive method doesn't work,I end-up,cursing god and everything living and dead on earth and I end-up running around the house and doing push-ups in desperation to ease the pain. You know the drill. While I 'm at its worst , I'm thinking it's 7-8-9 , because I just want to be dead at that moment. But once the pain is gone for the day ,I'm thinking it was like 5-6 I just overreacted. Now when my Cycle is gone, I'm thinking it wasn't really that bad at all.I can't image I was cursing at 2am because of stupid headache. I also am all alone in my house during the cycles, so there is no witness. Which reading of level is then true pain level that you are supposed to write down? Does your perception of pain changes the more time passes by? Thank you

My doctor said that CH are caused by swelling of T.....(something i've forgotten the name ) ,,,nerve behind eye. It is not known why it swells and causing pain . I'm not sure if I have remembered it correctly at the doctor's, but if it is true about that nerve,,so then biological clock and hypothalamus are somehow causing the swelling of that nerve? Is it possible to have CH diagnoses without that nerve being affected?

Thanks, But I'm interested more about actual mechanism or biology behind it. For example if we take cinamon and lack of sleep as triggers. Both are completely different, yet they may be the same trigger for a same person. What's going on in human body , that such different, seemingly not connected triggers can start a cycle ?

Hi, I was wondering what triggers cycles in general ? How are the cycles happening almost at the same time for each individual .( I have them march-may,,,,sep-oct....jan) Are the triggers the same for every person? Has anybody been lucky to skip a cycle or two? (some use Vit D regiment ,anything else? Thank you,

Flying started to trigger my cycle too. What's strange is , it happens on my way back ,never at the destination. Sometimes its on the plane coming back , min.after take off, sometimes 6-10h after landing. It happened on all my recent eight flight coming home. It's not worth to fly ,but it's overseas, so I have no option for other means of transport.

I have memory issues right after the attack stops, I feel very ,very slow mentally right after the attack . Probably 30points lower IQ. It lasts for about 1h ,but it improves slowly after 5min after the attack and full recovery up to 1-2 H . That demonstrates itself in bad cognitive abilities, difficulty to find correct word that you know ,recall a famous actor name for example and also motor skills are horrible but get better .After 1-2 h I feel like it never happened. I also feel a little euphoria 5-30min after the attack, mild to medium happiness and optimism. But no signs of memory problems 2 hours after the attack or days when i don't have attack.

Hi, I'm been doing vit reg. for 2-3weeks or more .I 'm been taking vitD daily and Omega-3. I started with complete vitamin regiment and my attacks frequency decreses to 2-3 attacks a week from 10-12 a week., The days where i left out Mg and b50 I didnt have shadows or an attack. When I take full vitD regiment I would have shadows and some times attack the very same day. What is weird that the attack would start 10-15min after taking MG and b50. Q: Is it just weird coincidence or there maybe a reason why Mg and possible B50 would cause an attack? Also I stopped using any pain meds and oxygen . O2 only as a last resort. I'm very sure that migraine meds and OTC meds give me rebound headaches. I have also a suspicion that O2 increases my frequency of attacks.It will abort it each and every time,but It almost looks like your body has to go through this attack for whatever messed-up biological reason and the prevention with meds and oxygen just delays it. My first line of stopping the attack is E-drinks and intense exercise .Push-ups and pull-ups for about 20-40min at the first sign of shadow or an attack, with max of 1min of rests between series until I almost puke and can't even do 5 in a row.I can handle 2-3 of those extreme exercise routines a day, but not 2 -3 days in a row ,when my muscles and joints hurt like hell. This has been my way to stop the attack for about 7 years before i knew about oxygen and my frequency wasn't that bad . It's just frustrating now ,doing 500-800 push up at 1am right after falling asleep, then 300 at 5am a then 6am going to work in construction can 't continue for too long. TO SUM UP: I'm not sure what to do , continue with complete vit regiment or leave out mg and b50 , then O2 use is convenient but I'm worried about rebounds . With exercise at the first sign of an attack I would have max 2-3 attacks a day but not every day . Right now I continue with vit regiment but no mg and b50 and i'm realtivly headache free. Today and yesterday i took also mg and b50 and i had attacks which were aborted with exercise. Any suggestion ? Thank you for any help and opinions. Also melatonin helps me alot , thanks for that advice. At higher doses.

1.How is melatonin helping , if it's just helps us to fall asleep ? 2.Do we know what is it spefically that casues CH during REM ? thanks,

Thanks, I 'll try bigger dosage. Should you continue with higher dosage when you are not in the headache cycle? When mine ends, i may have even 2 month or more before the next one starts. Night CH makes me so tired that i have to skip work . That means 2 days in a row, opposed to 1 day when they occur only day time. Thank for your help,,,I hope I m not too annoying with my questions, I 'll probably have little more in regards to vit D regiment. Thank you .

Hi, I take about 6mg of melatonin before i go to sleep. Sometimes at 11 , sometimes at 10, ,,,but many times if I had a CH that day, it will return and wake my up ussually 12:30am. Is this just coincidence regarding the exact time ? Any tips for prevention of night attacks? I may have CH at 10am , then 12PM ,but almost always a night attack around 12:30am after falling asleep . If I dont have a CH day time , its very rare that I would get one at night. Thank you.

https://upload.wikimedia.org/wikipedia/commons/f/fa/CH_mask.jpg http://www.clusterheadaches.com/O2/images/23.jpg (with a bag,not a demand valve) SImilar to this.

As the the OP's question about difficulty exhaling with a cluster mask...that usually happens with one that's been used a while and needs cleaning. If it's new...it could have a defective valve....be assembled incorrectly or the valve is stuck as a dirty one might be. Hard to say without examination. If it's defective DJ would undoubtedlydo what's needed to solve the problem. Hi, It's a brand new mask. Its assembled correctly ,its pretty easy system , no obstructions ,the outlet valve is clean open and has a flap at the end,which opens ,but only partially when breathing out. What does DJ stands for ?

Hi , I was trying to get more people involved in this discussion about BP ,but i guess there isn't much interest. I have found out , that it is impossible for me have a CH without elevated BP. I just however started to check my BP while having CH only with my last cycle.(last 30 days) If I can control BP when shadows appear , with slow breathing even without oxygen , I will not get it. Sometimes I'm not successful with controlling my BP with breathing techniques , but oxygen will do the trick. Have you ever had a CH with normal BP or anyone else? thank you .

I thought that demand valve works automatically and gives you oxygen as you breath in automatically and then stops by it self when breathing out. I hope your daughter is doing better,she is lucky to have you , it is just unbelievable how many posts you 've had far and how many people you and others helped. I started a vitamin D reg. and the frequency is down by 70% ,maybe its just my cycle ending which started 30days ago or its really working. thanks.

Breathing in with my mask is very easy. But breathing out is difficult if i keep it tight to my face . I feel like I have to really work hard to push the air from my lungs . The reason is , that the only why the air can escape when breathing out is thru the outlet hole that has a flap on it. The flap itself is not 100% flexible ,which is of course done to prevent air getting into the mask as i breath in from the bag. I looked in the mirror and i could see the flap opening only partially on 2 sides ,maybe only 20% of the outlet pipe is open when breathing out due to the flap sitting rather tight and lack of flexibility. I could just as well remove the flap and control the outlet hole with my finger , but it just takes too much effort when in pain. I tried to look up a mask that you said you were using , but i didnt find any pictures of it with that name . Could you post a link to a mask or upload a picture , especially the detail of a outlet? Right now I use the new mask to stop the attack and its really working great,but i loosen it up when breathing out, but later when pain starts to disappear i put on my old mask with a strap and just breath slowly for 10-15 min more. thank you .

Could you tell what kind of mask do you have? I really feel better to have my mask on all the time when pain starts. This mask gives me a really tight fit because it is rigid. The previous mask had only 1L bag, wasn'f fitting tightly , not good, the standard mask I was given with oxygen bottle. What's worse, medical company that supplies my oxygen gave me even one without a bag with one open flap . That wasn't working at all. Then by mistake they gave me one more mask with a bag and covered holes. The technician who knew I had cluster headaches, said to remove the bag ,claiming i did not need it . I never removed it and I have realized after a first attack how much better it was working. It it wasn't for this forum , I would have never found out and given up on oxygen . Even on youtube, many documents about CH show people with standard open hole masks. Thank you.

I have this mask. http://www.clusterheadaches.com/ccp8/media/ecom/prodlg/ClusterO2-full.jpg It's set up properly as on a picture with yellow sings showing the proper flow and flap that opens when you breath out is right where the arrow points "T" . I think the problem is that when you breath in a full bag, all that air has to come out through the same size hole ,but its covered with a flap,which opens only partially when you breath out . This flap sits more tight then flaps on a standard masks . I think it would work better to have a bigger outlet hole or double outlet hole. What kind of mask do you use? thanks

I tried breath out through the mask ,but it takes a lot of effort. I'm sure its is set up properly as breathing in is very easy and the bag fills out as it should. Before I was using a wrong type of non-breathable mask with 2 holes with flaps that made breathing out effortless. With this new mask , breathing into the mask , takes so much effort for me ,that it is impossible to hyperventilate. If I take a deep breath which empty the bag, it will take for me about 2-3 seconds to push the air out through the mask , The flap at the outlet opens out when i breath out, but probably not as much , as i would need, as I feel that it limits the amount of air that it can pass through. When I dont take deep breaths, it's little bit easier to breath out,but with a deep breath a fill like pushing the air out with a lot of effort. My mask stays tight to my face at all time. How difficult is it for you to breath out? I think it should be as easy as breathing in . Thanks,

Hi, I have a question about a breathing technique with a clusterO2 kit. Do you breathe out into the mask or remove it from your face when you breath out? Thank you.

I was wondering if there are people with CH who don't get elevated blood pressure while having a CH. My highest was at 155/110 , 120 pulse measured at 9 KIP . That was before I had any oxygen . At 10 KIP , there is no way for me to measure it , but i assume it must be even higher.