dereksgirl

hey all, after 14 yrs of ice packs, we finally, thanks to you, have an idea of what we are fighting. We found this sight in Jan about mid way through my hubbys 7 week cycle. As I was reading the busting info I noticed some warnings that made us pause and research the risks. During that time of searching, and waiting to see a neuro (total waste of time) his cycle ended. So we were unable to bust. But after 14 yrs of very clock work cycles, 2 yrs each (except for very early on we think they were a little farther spaced- also his first ever cycle would only hit in daytime hours, after that they have almost always been night time hits) 1 main 3 hour killer each night,slight shadows and maybe light 1-2K occasionally. Then after finding this sight, we set an appointment with a doctor,who was great, prescribed us oxygen and sumatriptan. (had to wait a month to see the puppet, oops meant neurologist)The night before we saw that doctor his pattern changed. Went to 4 hits a night, on a definite pattern and man oh man was he thankful for that triptan! That pattern continued for about 1-2wks then they started tapering down and we assumed his cycle was over (big sigh of relief) at about that time he was hit with a head cold, compliments of our 4yr old and has been fighting that for about a week now. Strange thing though. During that week he is getting hit with a "different" type of headache. Same neck feeling, kinda, but no eye pain. On and off this keeps coming, maybe one, not quite every night, around 8 or so - which is the time his early hit started when he went to 4 a night. Every time now he grabs an ice pack and it helps. Then tonight he gets it again, but this one is closer to a CH, radiated into his lower jaw - not yet to his eye. I can see the fear in his eyes. I have been thinking all along, this cycle is so different, the head cold messing with it...maybe he never really ended...maybe they are re-bounds??? So I have a couple questions... Could it be rebound from the triptan use? Is this what re-bounds look like? Has anyone experienced this while episodic... and not turned chronic? Also, usually busting is a last resort, but we feel that it is more natural, safer and more effective choice than what the doctors are offering. We have never tried any of the traditional drugs (besides this recent use of Sumatriptan). Legalities aside, is there any reason you could think of that it would be wise to try the traditional therapies offered before busting? TY so much for your thoughts and your time, I know this is a long post, but you guys are detail junkies ;D

sorry to hear you are in high cycle again Ting :'( that really sucks. I will be praying you find a trick. I know you shake it up and change things around, I hope you find something that works to get you PF, have you tried adding Batch's Vit D3, fish oil and magnesium? Big HUGE Cyberspace Hugs, DG

I was wondering if anyone knows of a link/paper supporting a "serotonin storm" happening in the brain just prior to a CH. I have seen it aluded to in 2 different posts, but have not been able to track down any medical papers on it. :-/ Thanks, DG

yes, thank you! DG

Les, I know you are busy looking into all of this, the information you have shared thus far has been very interesting! If you have the time, could you explain what "transgenic cell memory" is, and maybe - how it relates to triggers? Thanks so much! DG

This was SO easy to do... also wanted to add that CB receives $0.01 for each qualifying search done through the "IGive" search bar. This is an ongoing benefit, and a great way to support this cause. I know it doesn't sound like much, but seriously, we do ALOT of searching and this combined by all of us could really add up. Every little bit helps!

Thanks for popping over here and sharing Bryan!! (I read your post on CH.com) [smiley=thumbsup.gif] Great news that you were able to get PF again! Maybe CH Father could chime in here. I am thinking instead of finding a willing martyr, maybe we should put on our gloves and file suit against the government. It seems to me that there is plenty of evidence that Psilocybin is not addictive, and probably has less potential for abuse than that of many currently legal substances, and that there is an abundance of research that supports the past and present medical significance of this substance. What do you think CH Father? I am not sure what kind of law your daughter practices. Could this be a possibility and what would the projected expenses be? Maybe just filing a case could bring about much needed publicity? I would think someone with CH, who hasn't used the alternatives would be the safest bet, as they would have no risk of prosecution. http://en.wikipedia.org/wiki/Legal_status_of_psilocybin_mushrooms "The legal status of psilocybin mushrooms varies world-wide. Psilocybin and psilocin are listed as Schedule I drugs under the United Nations 1971 Convention on Psychotropic Substances.[1] Schedule I drugs are defined as [highlight]drugs with a high potential for abuse that have no recognized medical uses.[/highlight] However, psilocybin mushrooms have had numerous medicinal and religious uses in dozens of cultures throughout history and have a drastically lower potential for abuse than other Schedule I drugs"

I am worried he might start "faking" attacks in between cycles... ;D

LOL...we had read a week or so ago that sex could help, so we have experiemented, it was hit and miss, but we had fun testing the theory (hubby has been PF 3 nights now so we are confident his cycle has ended. Could be 2 years before he gets any again.... I meant headaches.... ;D )

Pretty pretty please, Funguy : This newbie, well I am 19 days old now ;D, spent alot of time searching for information, and then trying to remember where I had found it... (except for the ForumJump to Clusterbuster files that you guys are great at mentioning! [smiley=thumbup.gif]) I actually thought you had to read through the different posts to try and gather up bits of information. It might just be me, I am a blond, but I found you guys through CH.com and for some reason I just went straight to the message board. I missed all that wonderful information under the tabs "Clusterbuster News" and "Cluster Headache News" on the first page of clusterbuster.com, until just 3 days ago. It might be good to have a reminder link to the wealth of information found there. Thanks for all you do!!

what time of year do you usually go?

Ah, what do ya know - found it [highlight]2.2.2 Migraines and other vascular headaches Does this therapy also work for migraine sufferers? Actually, the answer is 'yes' to your migraine question. Just the simple act of grinding up the tea for my husband has caused my own migraine symptoms to go into remission - now for almost 5 months. I didn't even drink any of it - just absorbed it through my fingertips. Just made me a little queasy for about half an hour and a slightly strange feeling, but I'd do it again in a heartbeat if I felt those symptoms coming back.[/highlight] http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1269811619 Thanks Alleyoop for bumping this link, went to look for it again and there it was! [smiley=dankk2.gif] I still wonder if it would work with the seeds? :

Thanks Jeff!

I think I remember a statement in one of the busting technique pages that the wife, after preparing the ,I think it was mushrooms, for her husband, noticed that her non-CH headaches went away. Does any one know if that would work with the handling of LSA in RC seeds. (if you rubbed them in your hands for a period of time, after they were crushed?) You would not technically be "ingesting" them right? Also, anyone know the shelf life of the seeds? How long can you keep them in the freezer? Many thanks! Dereksgirl

Hubby has been taking the licorice 3Xday for 10 days. His cycle changed the day before we started any meds - ever. He would usually have one 3 hour head banger a night. He had 4 the night before we got his script for Sumatriptan, and that pattern continued for the next 5 or 6 nights. Now he is all over the place. The licorice has been the only thing he is using - besides Sum. for the really bad ones. He did have a number of HA that seemed to disperse within an 8-12 min period of using the licorice as an abortive. But it was not always successful. We are discontinuing use tonight and switching to fish oil/vit D3 as mentioned in Batchs thread on CH.com http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416 Good luck to you all, hope you have success and PF days and nights!

Thanks for the leg work CH Father! I to will be looking at specifically what happens to the serotonin/dopamine levels during a fever.

I think these thread have great value, we don't know if there are different causes for CH. That would make sense to me - as there seems to be different things that help different people. As we keep looking for the major commonalities, and sub-commonalities, we have a stronger base of evidence to work with.

well said.

noticed alot of head trama listed - I have NO idea if this relative or not. I am just starting to research dysfunctions of the hypothalamus... :question "Trauma A trauma such as an accident that affects the head can also lead to hypothalamic dysfunction. A traumatic brain injury from an external force causes too much bleeding and can eventually lead to hypothalamic disorders" http://www.buzzle.com/articles/hypothalamic-disorders.html

I think your daughter if very wise in her decision. The knowledge that Derek could become chronic, as he puts it, "scares the $**t out of him" (and he is not one to swear usually)(I know as a supporter takes an amazing amount of self control to not let all of this overwhelm me). A younger person would probably have a very difficult time coping with that fear. Why see her burdened with it, when hopefully she will never have to go through that. You are a good "information buffer" for her .

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426/14#14 here you go Dan

;D ;D ;D

LOL! I would sit on his lap to get that for my DH!! ;D We could bring Potter back a bottle, get one for Ting too! Jammin, did you break your cycle with this? (If not - can I ask how you did?)

aw shucks... that's sweet Bejeeber... [smiley=dankk2.gif]

Alleyoop, Do you still have to click the "Get Notification" button on the thread page to get the email response? Thanks - I am learning this too :