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Title: Chicken Pox Post by starlight on Sep 11th, 2006, 12:36pm Hi All. For some reason, all the talk recently on these boards past few days about what triggers the hypothalamus to start malfunctioning (at what age) has made my brain start spinning. I am curious about viruses and if they can play some kind of role in weakening or affecting the hypothalamus. Peter Goadsby's research theorizes that cluterheads are born with abnormality of hypothalamus. I am in no way in disagreement with that--I merely want to know if something else helps to trigger the onset of the headaches . Here's a quick question, and I admit it is probably grasping at straws. Did anyone out there get chicken pox at a later age than "normal"--which, according to the Medline Encyclopedia on the internet would be after the age of 10. The reason why this could be important is because getting chickenpox after this age usually leads to a worse case of the illness. I myself got chickenpox at 11 and did have a bad case. Again, I am not trying to waste anyone's time, but if anyone knows when they had chickenpox (b/c this is something most everyone gets) please post here. |
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Title: Re: Chicken Pox Post by Margi on Sep 11th, 2006, 12:43pm My Mike has never had chickenpox and he's 49. In fact, he never had any of the childhood viruses either. In our 20 years together, I've only seen him have 'flu once. Colds, yes, and they do usually trigger a cycle. If this is viral in nature, why wouldn't everyone who gets a virus get clusters, though? I think it's because they're not born with dodgy hypothalmi that are pre-programmed to launch cluster headaches when hormones fluctuate. Just my two cents. |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 1:00pm Margi, I am in total agreement that people with clusters were born with a screwed up hypothalamus. Total agreement. I just wonder if some virus (or viruses) could further weaken an already abnormal hypothalamus (this would explain why not everyone who gets the "virus" would get the clusters). The reason I wonder this is because I do think it is odd that the hypothalamus will do its job correctly for a time--I think it is so confusing/mysterious as to why it malfunctions at different ages/decades for different people and why it functions correctly at all for years previous to the malfunction. Now, hormonal fluctuations definitely could be the absolute explanation for why/when it malfunctions, but I wonder if a virus (or viruses) could play a role because of the fact that CERTAIN viruses stay in the body forever--maybe the body reacts to their presence at varying points throughout the person's life in some way helping to cause the cluster headaches. Thanks for the info about your husband's history with chickenpox. It seems like he was a very healthy lad :). Totally just asking out of a hunch (which could definitely be wrong). Star |
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Title: Re: Chicken Pox Post by Bond007 on Sep 11th, 2006, 1:17pm Hey star, I had chicken pox when I was very young and it was an extremely mild case -- about 6-8 pox marks all on my butt. So mild in fact that my family doc and mother had me playing with ALL the neighborhood kids who'd come down with chicken pox because they both wanted me to get them a second time. My doc was afraid that I didn't have a severe enough case to be immunized enough against another case later in life. Oddly enough, I never did get them again, and I was exposed several times throughout my childhood, let me tell you. |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 1:29pm Bond, Thanks for the response. Interesting right there that you had such a mild case (which usually won't immunize you against them as you said) and Margi's husband didn't have them at all!!! Maybe I am the fluke having had them if this is a trend! Anyway, this is interesting--I appreciate you responding. Star |
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Title: Re: Chicken Pox Post by Katherinecm on Sep 11th, 2006, 1:32pm I had them when I was about six, I think. Fairly mild case. While I didn't have CH until 3 or so years ago I did have other signs of an abnormality in the hypothalamus. I've always had unusual sleeping patterns, a low imune system, and very high pain tolerance. I've also had periodic hormonal problems- heavy/painful menstrual periods, ovarian cysts, etc. |
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Title: Re: Chicken Pox Post by Bond007 on Sep 11th, 2006, 1:42pm Now that Katherine mentions it, I am a rather "lumpy" individual. I'm VERY prone to sebacious cysts that I typicaly have to have removed surgically every few years. My body also tends to heal itself much more quickly than normal creating far more scar tissue than it normally should. Whenever I have to have surgery, my surgeon normally has to schedule a follow-up surgery a few months later to remove excess scar tissue. That happens every time without fail. Also, puberty for me was rather rough, meaning my body produced enough oil to power a small city for several years without needing any support from OPEC! |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 1:43pm Katherine-- Thanks for your response. I see what you're saying too--that maybe there are signs of abnormal hypthalamus and/or hormonal manifestations (heavy periods, etc.) before the actual onset of the headaches. I was "hoping" everyone would say they had chickenpox as teenagers and then we would maybe have caught the beast red-handed! I think it is so strange--like I know many other people have tried--to find that one thing we will all have in common--like hazel eyes, left-handed, etc (that all turned out to be false)--and it is just so elusive. PFDAN, Star |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 1:50pm Bond-- I am laughing at your first sentence! Very descriptive--I love it! I am not sure what to make of the scar tissue thing you mentioned. But it must mean something. I guess we all have some type of hormonal stuff going on? Star |
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Title: Re: Chicken Pox Post by Bond007 on Sep 11th, 2006, 1:52pm Well, the hypothalamus does control so many different areas of our bodies that it may not manifest itself as the same thing for each of us. I'm just guessing, though. But, pherhaps there's particular combination or maybe an overload of many things that contributes to the malfunction? Just hypothesizing out load. I do know that when I was young, I very rarely ever got sick. Even as an adult, I'm typically very healthy except for the occassional head cold. |
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Title: Re: Chicken Pox Post by Bond007 on Sep 11th, 2006, 1:56pm I had some shoulder surgeries a few years back. Typically, one surgery should have fixed my particular malady. 6 months later, I was in excrutiating pain so my ortho scheduled another surgery for the first shoulder. He found enough scar tissue to make up the size of a softball in my shoulder joint. He was amazed that my body would heal itself so damn quickly that it would create that much scar tissue. One year later when I had to have the same surgery on the left shoulder, we scheduled 2 surgery dates: 1 for the repair, and the 2nd for the "clean-out" 6 months later! UGH! |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 2:11pm Bond-- I was super healthy as a kid too--didn't know what a cold was--chickenpox probably first time I got sick at all. Then not so healthy as teen cause I had bad mono. Maybe there could be something with having too good of an immune system at least during childhood? (although Katherine is saying that was not the case for her so I am probably barking up the wrong tree) One weird thing as you mentioned shoulder surgey--one of my shoulders dislocated a lot as a kid. For some reason, I wonder about cluster headaches thinking that it was some injury or illness that had something to do with them. I guess until they "cure" these things, find out exactly what causes them, we'll all wonder. Take care, Star |
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Title: Re: Chicken Pox Post by Bond007 on Sep 11th, 2006, 2:25pm It's probably some errant gene and until someone with more money than Bill Gates throws their stash at the problem, no one will take the time ro the resources to try and find the damn little bugger and figure out a way to turn it the F off! UGGGGGGHHHH!!! If you can't tell, I'm dancing with the Beast right now. And, I'm not the least bit happy about it, either! OUCH! |
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Title: Re: Chicken Pox Post by Guiseppi on Sep 11th, 2006, 2:38pm Funny, y'all rang a bell with me! I was never sick as a child, rarely sick as an adult. Never had the chicken pox that my mom knows of. I'm from a family of 14 kids so it came thru the clan several times, if I caught it it was too small a case to notice. I'm 46, real clusters started in early 20's, in hind sight I was getting the beginnings of CH by about 18. Grasping at straws isn't a bad thing, it passes the time and who knows?????? Guiseppi |
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Title: Re: Chicken Pox Post by BigCoffinHunter on Sep 11th, 2006, 2:45pm I had the regular dose of chicken pox when I was in 8th grade. Don't think I was more or less sick than average. |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 3:01pm Guiseppi-- Very interesting...when I got it all 4 of my sisters got it at the same time--all 5 of us had it at once (what a wonderful time for my mother). You would really think in a family of your size with chicken pox coming through a couple times you would have caught it--but you didn't. That is odd. Because I think it is very contagious. Also it is odd that so many adults here haven't had it. Or had a mild case--that's kind of like not having it if it was mild enough. Now for me to have gone to age 11--and I was around TONS of kids and lots that had it--you know playing with kids and not catching it--it is technically late to get it. Big Coffin Hunter--age 13 is late to get chicken pox--not a bad thing--just late-- it means you avoided getting it for quite a length of time. OK...my very non-scientifically oriented brain will hazard a guess--is it possible that--and I am only saying possible-- that somehow we as clusterheads, that our bodies reacted differently to the chickenpox virus--as in--fighting it off too well? To have a mild case, to remain insusceptible until a later age (over age 10), or to not get it at all (which is unusual)--it means that we are not easily giving in to the virus (at least until a point). Again, this is a childhood illness--most people will get it before age 10. Anyway, only food for thought. |
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Title: Re: Chicken Pox Post by StressFree on Sep 11th, 2006, 4:49pm Had mild chicken pox at 2 years old. Cluster attacks began around 15 years old. Severe case of chicken pox at age 25. I've wondered too about what could cause it to start in each of us. Why don't we all have it all our lives? (some do I hear). Many don't start getting attacks until later in life, while some quit having attacks in middle age or later years. Very odd, that's for sure! Prayers for all, Rich |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 5:23pm Stressfree-- Wow! Another person who did not develop immunity to chicken pox as a young child. I don't know what to make of all this. But i think it is interesting. At the very least, it could point to something regarding the immune system in cluster heads. What that is I don't know. Is our immune system too good? Are some of us getting a "taste" of chicken pox at a young age (with mild or not even noticeable symptoms) and it is affecting us differently--rather than getting full-blown cases as children under age of 10? Sure, it's getting sci-fi with the whole thing. I too have always felt there was something that "started it". I hope someone figures it out one day! Star |
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Title: Re: Chicken Pox Post by eyepopper on Sep 11th, 2006, 5:24pm I'm 47, and I never had the chickenpox. The only virus I can attribute the CH attacks to is "pregnancy", and that was one whopper of a virus! My attacks began two weeks after my daughter was born (never had an attack before that). I have alway wondered if some post partum "gilitch" triggered these for me. . . . but, that wouldn't explain why those of the male persuation get them, now would it? ;) |
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Title: Re: Chicken Pox Post by Katherinecm on Sep 11th, 2006, 5:25pm How did you arrive at the conclusion that chickenpox might have something to do with it? |
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Title: Re: Chicken Pox Post by nani on Sep 11th, 2006, 5:25pm I had the worst case of chicken pox the doctor had ever seen. I was 6 or 7, I think. I still get shingles now and then, so the virus lies dormant in between the breakouts. |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 5:30pm Eyepopper-- I certainly understand why you would wonder that! And certainly would point to something hormonal without a doubt. Although--wow it is just so weird to me that so many are saying no they haven't had chickenpox as kids or AT ALL!!! And also sometimes hormones can affect the immune system--like women are more susceptible to getting sick during their periods because as a result of the change of hormones that allows for menstruation the immune system becomes lowered. Thanks for the responnse, Star |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 5:36pm Katherine-- Not totally sure! Well, I guess in a nutshell just the fact that certain viruses, as Nani mentioned, do lie dormant and sometimes reemerge (one example is shingles). Just the fact that chicken pox, Epstein Barr, herpes viruses--they hang around in the body forever. Made me wonder if they could be "acting up" or something? |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 5:38pm Or if maybe since they are kind of powerful viruses if they could have helped to weaken the hypothalamus in certain individuals (which would probably not be as sci-fi). Star |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 5:42pm Nani--thanks for the response. That is interesting that you had such a bad case (the worst the doctor had seen). You know--maybe this stuff could be important with histories of illnesses and such. I really think there could be something to this whole thing with viruses, but I just don't what. Star |
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Title: Re: Chicken Pox Post by kcopelin on Sep 11th, 2006, 5:48pm Hmmm...had chicken pox my senior year in High school-very embarassing. Had measles in basic training-even worse-also have cysts that I am now trying to ignore because I pass out when they remove them ::) I'm such a wimp about some things...I think there could be a viral/immuno-suppressed connection-and if anyone can find it, it'll be us clusterheads. thanks for the thread....the search continues.... PFDAN y'all kathy |
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Title: Re: Chicken Pox Post by starlight on Sep 11th, 2006, 9:27pm Kcopelin-- Hey thanks for the reply!! Another person getting chicken pox at late age! I too think there could be something strongly correlating with the immune system with the behavior and the manifestation of these headaches. The really frustrating part of thinking about these headaches is that there is SOMETHING about them--and I am sure everyone who gets them or knows someone close to them who does--can relate--that just seems to CRY OUT for identification. Like some MISSING PIECE. Some event, something, something that is being overlooked. So thank you everyone who humored me in responding. I guess maybe it's grasping at straws. But maybe someday one of us will grasp onto the right one. PFDAN to all. Goodnight, Star |
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Title: Re: Chicken Pox Post by BB on Sep 11th, 2006, 10:12pm Keep grasping at straws, I say. Maybe one day one of us will grasp that last straw that will break the beasts back. :) Annette |
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Title: Re: Chicken Pox Post by georgej on Sep 12th, 2006, 3:57am Hi Starlight, Have hesitations that the chickenpox connection will go anywhere, but I'll contribute my stats: Had chickenpox at age ten. Christmas. I remember the chickenpox vividly, all poxy in front of the Christmas tree. Not a particularly hard case, but pretty lumpy all the same. The vaccination for chickenpox is fairly recent. If experiencing chickenpox has some sort of direct relation to CH, shouldn't those younger than we who were vaccinated at an early age show a lower incidence of CH than those of us born in the fifties, sixties, and early seventies? The herpes zoster virus does infest the nerves, however. Witness the progress of shingles, which follows the nerve pathways. Great idea to investigate other possibilities. I agree with BB that looking carefully at all possibilities may eventually provide us with some answers. Thank you. Best wishes, George |
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Title: Re: Chicken Pox Post by kcopelin on Sep 12th, 2006, 9:53am Star, First meet and greet with other clusterheads we spent about 4 hours (at least) exploring areas like left vs right handedness, color-blindness, smoker vs not, we clusterheads will prevail at some point in time because the commanalities I have seen are: intelligence, compassion, determination (or pure stubborness), humor (a sign of intelligence), and openess to look at and try anything that seems to make some sense. (In my case, I drew the line at blue cheese and vinegar rubbed on chest-but am totally not above licking pyschedelic toads) the search continues.... PFDAN y'all, kathy |
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Title: Re: Chicken Pox Post by kcopelin on Sep 12th, 2006, 9:56am Hey, we could be, like, CSI. Clusterheadache Scene Investigations kathy |
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Title: Re: Chicken Pox Post by BB on Sep 12th, 2006, 10:07am on 09/12/06 at 09:56:07, kcopelin wrote:
;;D I love that ;;D Annette |
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Title: Re: Chicken Pox Post by starlight on Sep 12th, 2006, 10:16am Hey you guys, Thank you guys a million for the encouragement and humoring of the perhaps zany ideas! Kathy, I agree--we're all turning into amateur detectives...I think we maybe should call "House" and get him on this case :) George-- Very good point. Although I think the chicken pox vaccine has only been administered in the past ten years, so we might have to wait a while to see if there is in fact a lower incidence of CH in the chicken pox vaccine generation. But one would think if the theory holds any water at all that there would definitely be a lower incidence as you're pointing out. The only thoughts I can come up with today on this matter is that since chicken pox is such a common childhood illness (throughout time almost everyone gets it and usually at a young age) perhaps it could be possible that developing immunity to this common childhood illness at a YOUNG AGE could act as a buffer in some way to getting CH. So, in other words, not getting chicken pox at a young age could maybe be (and I am only saying maybe) be ONE risk factor in developing CH. (This is nothing more than a brainstorm--I am not CONVINCED of anything here--just brainstorming.) I realize this is a zany idea but maybe one day someone can make more sense out of it :) You guys are awesome. Thanks for responding. STar |
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Title: Re: Chicken Pox Post by BB on Sep 12th, 2006, 10:28am Hi Starlight Just checked with DH, he couldnt recall exactly how old he was when he had chicken pox, maybe 5 or 6 and had a bad case. But he was diagnosed with glandular fever at age 16 and was very ill with it. Glandular fever is another viral infection where the virus can stay in your body for years and years and really weaken the immune system. Many people here have posted about getting a flu prior to a cycle starting so there might be a link between some form of viral infection and the immune system and the hypothalamus starting to malfunction. I will ask Professor Spira next time I see him to see if there has been any research into this subject. Annette |
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Title: Re: Chicken Pox Post by starlight on Sep 12th, 2006, 10:28am Just wanted to add I am definitely not trying to discredit anyone's chicken pox experience if they did in fact get it at a young age. Just playing with ideas in hopes that anything of any small value can emerge. And just wondering what it is that these viruses can do and what affect they could have with CH (if any). Star |
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Title: Re: Chicken Pox Post by starlight on Sep 12th, 2006, 10:31am Hey BB! Thanks for the info! That is really interesting about your husband having glandular fever. I don't know much about that, so I am going to look it up on the net. That would be so great if you happen to ask that doctor about this matter with viruses. Star |
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Title: Re: Chicken Pox Post by BB on Sep 12th, 2006, 10:37am on 09/12/06 at 09:56:07, kcopelin wrote:
And talking about scene, the dance with the beast during a KIP10 can certainly be a scene to behold ... OK, thats enough warped humour, I better crawl back to bed. Painfree night everyone. :) Annette |
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Title: Re: Chicken Pox Post by wysper on Sep 12th, 2006, 10:42am I got the chicken pox around 5 or 6. Just your regular case. I do experience very heavy menstrual cycles, ovarian cysts, heal very quickly and have a high threshold for pain. My ch's started at 14, started out very painfull and lasted about 2 months but as the years pass the cycles don't last as long as they used to. |
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Title: Re: Chicken Pox Post by starlight on Sep 12th, 2006, 11:21am BB, Whoah--glandular fever is mononucleosis. I started a thread on July 16, 2006 called "mononucleosis" before on this board because my headaches started about a month after my first episode of mono at age 14 (during which I did not rest at all). About 10 months later I had a second episode of mono (tested positive again for mono, swollen glands, sore throat the whole bit). My doctor at that point said that I had "chronic mono" and it took me more than a year to get rid of the swollen glands and to not need like 12 hours of sleep a night. I started the mono thread before cause I had drawn a connection between mono and clusters but I didn't get many responses at all asking if others had had mono so I just dropped the topic but I am more than willing to believe that these viruses play a role. Star |
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Title: Re: Chicken Pox Post by BB on Sep 12th, 2006, 5:36pm Hi Startlight Thats really interesting. My DH had glandular fever at 16, was very unwell with it, he said a lot of weird and bad headaches started around that time but was attributed to the virus so no one took notice. Prior to that he had been a very well and strong child. Another interesting thing was once he got better from the glandular fever, he had a really big growth spurt. He got to 6ft tall by the end of his 16th year. There might be something in it regarding long lasting viral infection. I will do more research alongside you if you dont mind and post here and will ask the Professor, he is the top one in Sydney for cluster and is quite knowledgeable about it. Maybe we can resurrect the Mononucleosis thread again too? Good luck and painfree wishes to you. Annette |
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Title: Re: Chicken Pox Post by starlight on Sep 12th, 2006, 10:19pm Hi Annette, That is really interesting to me that your husband starting getting bad and weird headaches with the mono. I have always felt very "suspicious" towards my own experience with mono as I felt it may have played a role in "throwing things off" in one hell of a big way ultimately. It is interesting too about your husband's growth spurt after the mono--it would not be unbelievable to me that the virus might in some strange way cause some kind of malfunctioning or hyperactivity in the hypothalamus. Even the odd sleep cycles brought on by mono--it's like the body just wants to sleep A LOT you know for 12, 13 hours at a stretch if it can--what effect might that have I wonder--perhaps the hypothalamus changes in some way. I would be more than happy if you wanted to ressurect the mono thread at any point! I think it would be a great idea actually! And if you get the opportunity to talk to the doctor in Sydney that would be a wonderful thing. I think that if asking these questions yields even a clue as to what sets off the hypothalamus (even in people who may not have had mono) it is well well worth it. Good luck and thanks for everything you're doing on this site! Star |
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Title: Re: Chicken Pox Post by Bond007 on Sep 13th, 2006, 9:43am Hmmmmm, I don't know gang. Mrs. Bond had a VERY severe case of mono as a teenager along with an odd growth spurt as well and she doesn't suffer from clusters -- at least not yet. In fact, I do recall her telling me that she had started to get over her mono, or thought she had, and then it struck again. Also, she'd have these severe growth spurts that would literally exhaust her to the point that she'd sleep for 12-14 hours at a stretch. Now, if that's not odd, I don't know what is. I never had mono even though I was exposed to it on numerous occasions. Go figure! |
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Title: Re: Chicken Pox Post by BB on Sep 13th, 2006, 10:03am Now THIS is really weird! I had another chat to my DH Daniel who told me that 6 and then 3 years ago at exactly the same time as the start of this cycle of cluster he became unwell with a lot of headaches and fever and the GP he saw at that time did some blood tests and thought that the glandular fever was back again as his white cell counts went up really high. During those weeks he was really tired, had a lot of bad headaches as well as short term memory problems and would sleep up to 20 hrs a day. He was given the diagnosis of Chronic Fatigue Syndrome then as no one could work out what was wrong with him. Now looking back we are sure that they were early cluster cycles as he did have the same left sided headaches with a hot drill behind his left eye and droopy eyelid. Only then the pain wasnt as bad as this cycle, maybe to a KIP7 which he could handle with normal OTC pain meds. There must be some relation to hypothalamus malfunction and sleeping patterns/problems which may or may not be caused by those long lasting viral infections? What do you think folks? [smiley=huh.gif] Annette |
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Title: Re: Chicken Pox Post by kcopelin on Sep 13th, 2006, 10:14am Annette, Epstein-Barr virus, herpes zorastor[sup][/sup]sp virus (shingle(, connection between either one or both with CFS and fibromyalgia, and CHs....all possibilites. Will take a researcher, laboratory (and perhaps a spooky castle in Romania( to pin it down- but bet there's some connection-even if it is only that those issurs mess up sleep cycles to begin with. About pain tolerance-at the age of 4 I had to have my appendticts removed-complicated by the fact that they ruptured and I had only complained of a "stomach ache" Fast forward to this year my son complains that his (friend) hurts his right testicle was swollen red-and they had to do emegerncy surgery-couldn't save the testicle-but his pain tolerance is extrtemely high-inherited from Mom. Please God, do not let him have CHs. PFDAN y'all kathy |
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Title: Re: Chicken Pox Post by starlight on Sep 13th, 2006, 10:16am Annette, That is very interesting about your husband's experience with this recurrence with mono or chronic fatigue. And it is more evidence I believe of a possible link. Absolutely I think there is a possible connection with these sleeping/pattern problems brought on by infection (or possibly some way the viruses instigate the hypothalamus to behave/change/etc. to accomodate/fight them with the sleep). One other thing--my first cycle with the HAs was much milder than the other cycles. A couple sporadic lower KIP scale headaches over a couple weeks as opposed to 6-8 + weeks of multiple nightly high KIP scale HAs (if not using meds/abortives). Another interesting thing I thought after going to Wikipedia was the CMV virus which can give an individual mono (but that individual will test negative for mono)--just something to keep in mind if an individual flatly denies having had mono there is still that remote possibility. Star |
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Title: Re: Chicken Pox Post by Margi on Sep 13th, 2006, 10:26am I'm still not convinced on the viral theory. I think a common thread you're all missing here is the fact that most clusterheads are super healthy. Quite a few here have commented that they're almost never sick and, if they do catch a virus/cold, recover quite quickly. Also, it's been discussed in the past (not in this thread) about how quickly clusterheads heal from wounds - again indicative of a strong immune system. I saw my hubby run his finger vertically through a table saw - split the tip of his finger like a carrot stick (lovely, huh?). Little bit of surgery and quite a few stitches but a remarkably quick recovery, even the doctor was blown away that he was completely healed before the stitches came out. He has had numerous injuries like this and his healing time is consistently amazing. The only thing that ever brings him to his knees is getting a cold that 99.9% of the time launches a cluster cycle. We live in fear of colds in our house, to the point that we don't let the kids come over if they're germy. :( To me, that is the ONLY viral connection - but it certainly isn't the original cause of cluster. Maybe a cycle trigger, but not the cause. I haven't yet once seen anyone comment here that their first true cluster cycle came at the end of a virus. Lots of virii include headache as a symptom (like mono), but...are they cluster headaches? I'm thinkin' not. Again, my hubby has had none of these viruses yet we have a childhood photograph of him at age 5 or 6 and he already had "cluster eyes". I firmly believe this is a condition present at birth that comes to fruition with a hormone flux. Maybe the hypothalmus is so busy fighting off maladies and super escalating recovery times, that it becomes overbalanced in this category and underbalanced in distributing seratonin and other hormones. Edited to add: Another thing you have to consider is that lots of people get chicken pox and don't ever get cluster. I got them at age 23 when my daughter got them. (We hadn't met Mike yet). I'd already been a migrainer for 10 years by that point and, although I was really sick, it didn't make a dang bit of difference in my headaches. And my daughter isn't a clusterhead (but she is a migrainer). |
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Title: Re: Chicken Pox Post by starlight on Sep 13th, 2006, 10:44am Margi, I agree that cluster heads are quick healers--I myself am a quick healer of physical wounds and always have been. Super healthy until about the age of 10--as an adult not so--frequent colds, etc. My HAs did start about a month after my first episode with mono had supposedly "cleared". I think your last paragraph was very interesting. Could be that cluster head's hypothalamus' hyperreact to illnesses creating paradoxical results--quick healing/recovery along with production of clusters. The thing with your husband and colds triggering or preceding cycles, that is interesting too. Colds often trigger cold sores, etc. in certain people, so maybe a temporary lowering of immune system is a trigger for some--why I do not know. I don't propose that all here have had mono--that would be extreme--but maybe SOME have--the usefulness could be in unearthing a clue as to what "agitates" the hypothalamus and how and when. Or if separately, peripherally, in certain cases, these viruses could be capable of permanently damaging the hypothalamuses of SOME, maybe it would help figure out the mechanism for others? Again, I think Goadsby's research is briliant. How many years were people completely in the dark about what area of the brain was involved? And for him to have found that there is an actual abnormality in the brain of clusterheads--it is amazing-- he has done amazing work. Star |
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Title: Re: Chicken Pox Post by starlight on Sep 13th, 2006, 12:05pm Also, Margi and Annette (you both may find interesting)-- Check out post from Sep. 10, 2006 under the Medications section titled "does anyone else get swollen glands"? The person says they have just been diagnosed with cluster headaches and have had swollen glands for a year that have remained despite anti-biotic treatments. I am no doctor but it sounds like possible Epstein-Barr illness (possible mono). |
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Title: Re: Chicken Pox Post by Bond007 on Sep 13th, 2006, 12:56pm Margi's comments about quick healing got me to thinking about when I had my wisdom teeth removed. I had all four taken out at the same time. Of course, I couldn't have it done in the doctor's office; I had to have it done as an outpatient surgery due to me being on Lithium at the time. Long story and not related to CH. Anyway, after I woke up from surgery and was released from the hospital, my grandma was driving me home and asked if I was hungry, I said sure how about a Big Mac. I ate 2 without any problem. I had no swelling, no bruising, no impaction, no dry socket, no complications whatsoever. My doc gave me 2 weeks supply of Vicodin for pain and I think I only took 2 pills, and I'm normally a whimp when it comes to pain. I was supposed to get my stitches out 10 days later, but when I went in after 5 days for a checkup, my doc took one look and decided to take the stitches out early because I had healed so damn fast. |
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Title: Re: Chicken Pox Post by crftymom on Sep 13th, 2006, 2:52pm My son(7) has ch. He has had the chicken pox vac. As far as being a healthy child, he has had the flu several times, colds like crazy, and has recently started having hives for some undiscovered reason. Still trying to figure that out. He does also have a brain thing called Crossing-the-midline. Which could lead into dislexia. His first cycle started in Dec 2005. |
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Title: Re: Chicken Pox Post by Katherinecm on Sep 13th, 2006, 5:17pm My immune system isn't that great. But then I had many courses of antibiotics, from about age 2. As a baby I once had a fever so high it triggered a seizure, no one knew what was wrong with me. As a child I had chronic ear and upper respiratory infections. I was hospitalized at age 12 with an unknown illness. I had strep throat 13 times, and pneumonia 3 times. The last time I had pneumonia was what triggered the first KIP-10. The next two episodes after that were stopped with a short course of antibiotic. But about 4 years before that I had what felt like a sinus infection that wouldn't go away. Retrospectively, I think it started as an infection but transistioned to low-level CH accompanied with migraine. I do seem to heal fast from other sorts of things though- sprained ankles, knee surgery, 3rd degree burn... |
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Title: Re: Chicken Pox Post by BB on Sep 13th, 2006, 6:33pm I forgot to mention that I asked Prof Spira previously about DH being normally healthy and heals very fast from wounds especially bleeding types. He would cut himself deeply with power tools and would not need stitches. Well, the Prof explained to me that the blood of CH tends to be thicker than normal people, thats why they dont bleed as much and cut wounds or bruising heal faster. The downside of this thicker blood is that their circulation is usually not as great and that contributes their blood vessels tending to swell up more than normal compared to people who dont have CH. This transient thickness of the blood can only be tested doing special blood tests. I didnt get to ask the Prof exactly what blood tests they would be but I will next time and will test DH for it. One problem with CH is because there is so little understanding of the condition that apart from MRI of the brain to exclude brain tumour and/or bleeding, the diagnosis is based entirely on clinical symptoms ie what do the headaches feel like and when do they happen etc. There has not been ONE diagnostic test or sets of tests that can say 100% you have CH. Thats why people are misdiagnosed left right and centre and having a hard time convincing people including doctors that they have CH. Now thanks to Dr Goadsby who found that there is anatomically some abnormality in the brain that is unique to CH that we start to have a diagnostic feature. If we can come up with other features such as abnormal growth hormon level, the presence of certain types of virus antibodies, other presence of chemicals or cells in the blood etc, then maybe we will have first a diagnostic set of tests that will confirm as quickly as possible that one has CH, secondly will start helping to look at a cure or prevention. There is now vaccination for chicken pox, but not for glandular fever nor cytomegalo virus yet. Good luck with your quest Starlight, keep up the inquisitive minds, my dear :-* Annette |
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Title: Re: Chicken Pox Post by starlight on Sep 13th, 2006, 8:19pm Annette, Thanks for all of your great information. A lot of it is new to me and I like the way you explain things. Also I will definitely keep my wheels spinning and see if any other ideas come up. And I am sure they will knowing me :) CfrtyMom-- I am extremely sorry to hear that your young son suffers from clusters. Hearing things like that is what makes me want a cure or at least more understanding of this awful condition. Or at least a clue as to what might set the headaches off in the first place. I have had these headaches for 18 years now and believe me it is one of the most baffling challenges to figure out where they came from--a true mystery. Thank you for the info about your son having had the chicken pox vaccine. I realize I have thrown out quite a few strange "theories" in this thread. But damn I'd like to pin these headaches down. Katherine, All interesting info you've given. I have read before of lots of clusterheads having histories of sinus infection. And pneumonia triggering your first KIP 10--there you may have had less oxygen in the blood perhaps exacerbating the HAs. I think this exchange is great because I think that somewhere there is a reason--perhaps there is immune system involvement. We'll never know unless we ask. Thanks guys. Star |
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Title: Re: Chicken Pox Post by jon019 on Sep 13th, 2006, 10:47pm Hmm, don't know. I fit some of the responses here but completely opposite of others. Sounds like typical clusterhead to me. For instance. Had chicken pox (and ALL the other childhood diseases) as a child. Heal VERY slowly BUT rarely get colds or flu. Still, lots of immune problems like food allergies, hayfever, lichen planus. My Doc has commented on how THIN my blood is (I Do drink LOTS of water). High pain tolerance (but I attribute THAT to this friggin ch condition). Up until my late 20's early 30's I slept more than anyone I know. My folks KNEW something was wrong because as a baby I would sleep 20 hours a day. EVERY baby pic of me I have ever seen, I'm asleep. Dodgy hypothalmus for sure but didn't get ch til 26. HEY, just realized the clusters started when the excessive sleep STOPPED! WOW, what does that mean? Keep questioning, this is interesting. Regards Jon |
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Title: Re: Chicken Pox Post by starlight on Sep 14th, 2006, 9:53pm Jon, Your last comment is extremely interesting. The onset of my CH was between 2 episodes of mono during which things had supposedly "cleared" and at that point I seemed no longer ill, no longer sleeping excessive amounts--so perhaps change from excessive sleep to normal sleep (at least for some) could be a factor in the onset of CH. Also, my neuro has told me that i have a very pronounced "prodromal" period (which is a warning that I am going into cycle very soon)--the warning is that I start sleeping only a few hours at night and I have no desire of any kind to eat for about a week. So in other words, the sleep diminishes. I think you are onto something, and the reason why it is so important is that it could help us figure out what these clusters mean--what is the body doing and why if it is in fact some kind of REACTION to changes in sleep amount or quality. Thank you for your response, Starlight |
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Title: Re: Chicken Pox Post by jon019 on Sep 14th, 2006, 11:09pm Hi Starlight, Now appetite, that's another puzzler for me. Same time my sleep pattern changed, and clusters started, my appetite diminished. Only eat one meal a day. Sometimes have to force myself to eat (in or out of cycle). Bad tiddings since appetite loss is a major factor in the decline of elderly folks. This crap just gets me down. Thanks for the interesting thoughts. Regards Jon |
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Title: Re: Chicken Pox Post by SophiaK on Sep 15th, 2006, 3:47pm BB, great information. I had chickpox as a child and I still remember it. It was pretty rough. I also have a high pain tolerance. Immunity system could be better. I do heal fast, although now that I'm older it seems to take a little longer, I still bounce back, but sometimes the body doesn't follow as quick. Into my 9th month of daily Head pain. It's not easy to maintain a positive outlook. I start Inderal tomorrow, will let you all know what if anything changes. If not, I have my next step planned. |
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Title: Re: Chicken Pox Post by starlight on Sep 17th, 2006, 5:21pm Hey Jon, With the appetitie thing--melatonin helped me regain appetite--it returned to normal (didn't increase it more than "normal" or anything). My doc wasn't sure why the melatonin returned my appetitie to normal but he did say that the hypothalamus controls our appetitie, our sleep, etc. All I know is melatonin helped with the appetite and helped with the HAs (for a while). Star |
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Title: Re: Chicken Pox Post by starlight on Sep 17th, 2006, 5:23pm Sophia, Good luck to you and I hope you get a break--you deserve one! Star |
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Title: Re: Chicken Pox Post by Charlotte on Sep 17th, 2006, 7:24pm Sphia, I hope the Inderal helps. Star, I had chickenpox by 5, mono as a teenager, and did not hve a healthy year until I was 35 and was on an allergy diet for my son whom I was nursing.That was also the only year of my life that I did not have a headache. I've had so many types of headaches, and the help I have recevied has been when I happened to have one in front of the current dr. The migraine relief came after getting one at the dr's, who hence believed I only had migraine, no matter what. The help I got in the past with clusters was when I had one in front of that current dr, and happened to have 1 a day at exactly 2:50 p.m. for a few months. That dr also helped me with the migraines, but not the type of headache I currently have left - the frequent headache "with elements of" cluster and cph". Keep searching, girlie. You might be the one who finds a cure. I don't think there is a cure. I don't even have a name for my headache and I don't know what to expect from here as it is different than my clusters were and migraines were. God, it scares the shit out of me. Charlotte |
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Title: Re: Chicken Pox Post by starlight on Sep 17th, 2006, 9:15pm Charlotte--that's got to be totally frustrating--these headaches that have elements of the cluster and CPH--I wonder if a good headache specialist could have more insight into treating a more complicated problem. Sometimes I think that these things can get more complicated with time. My cycle is longer than it has ever been and I am wondering why and when will it stop. Also I have had all kinds of weird things happen this cycle--and I mean WEIRD--a few occassions weird jolts of electrical feelings in my legs as HA coming on, a few occassions of waking up at HA time with a pronounced "clinking" sound in my ear but no HA. Right now I have been painfree for 3 nights (after my period just ended but last month this happened and then the beast RETURNED) only starting at 5 AM I still have weird very low-level shadow that goes in and out and never blows up. I am hoping and praying it leaves. But seriously if they have a headache clinic near where you are it might be worth checking out. Or even if you got referred to a different headache clinic that may not be as close to you--there are some across the country that more complicated cases are referred to. I'm sure these docs love having cut and dry cases but there are some out there that are not like that. I hope that you can find the right help. I will keep thinking up some more weird ideas and theories. I guess it can't hurt :) Wishing painfree to you Charlotte!!!!!!!!! Star |
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Title: Re: Chicken Pox Post by BB on Sep 17th, 2006, 9:50pm Hi Charlotte, I can understand how frustrating you are. Daniel has what Prof Spira called "atypical cluster" as well. He has the classic clusters, but then he also has symptoms of trigeminal neuralgia and hemicrania continua. Prof Spira ( who is the top cluster spec in Australia who had worked with Prof Goadsby and co-published several studies with him ) told us that its extremely rare , almost unheard of, to have so many symptoms on top of cluster like that, yet he responded to Indomethacin and Lyrica 100% so it was confirmed that he did have all of them !!!!! Now he also has this blurry vision that fluctuates so much and no one knows WTH it is either. He is going to see an opthalmologist and will have Vision Revoked Test to try to pin point where the problem lies. There is a famous saying in medicine " never say never". Our bodies are unique and they have no intention to keeping to the norm, if there is a norm. Prof Spira adviced us to not worry about names or labels or whatever, it doesnt really matter what name you give it, as long as you can control it and have a functional, happy life. I agree with him. Take care and God bless, painfree wishes to you. HUGS. Annette |
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Title: Re: Chicken Pox Post by starlight on Sep 18th, 2006, 11:34am Hey Charlotte-- I like BBs letter to you--"never say never" that is true--it makes you realize that what is happening to you is a result of you being a unique person whose body is not going to work exactly the same as anyone else's. Just a quick update--HAs are back. I am going to start drinking boatloads of water and I have been cutting down on smoking and am going to just try to quit cause I am starting to get scared that these things aren't leaving (when they usually have for past 18 years--yikes!!!!) I hope you are doing well today!!! Star |
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Title: Re: Chicken Pox Post by jon019 on Sep 18th, 2006, 12:18pm Hi Star, Yeah, now that makes sense. I never really thought of appetite in connection with hypothalmus, but there it is. Have tried melatonin before for the night hits. Had to stop because it made me feel, for lack of a better way to describe the odd feeling, "ooky". Maybe I'll try a low dose and see. Thanks for your curiousity and info, it's really making me think. Jon |
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Title: Re: Chicken Pox Post by SophiaK on Sep 18th, 2006, 8:17pm Jon, I didn't like the effects of melatonin when I used it recentley, wild crazy upsetting dreams. Decided to try another brand, I am taking 3mg a night, still get slammed 1 or 2 during the night. My point is, I don't get the crazy dreams and fall asleep fast and stay asleep until the hit starts. I am going to increase the dosage in a few days and see if I have the success others have had with melatonin. I suggest you try another brand of melatonin, make sure it doesn't have allot of fillers that might disagree with you. Good luck. |
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Title: Re: Chicken Pox Post by Margi on Sep 18th, 2006, 8:58pm on 09/15/06 at 15:47:37, SophiaK wrote:
um....screeech.......sorry to interrupt this thread but....Sophia, what exactly IS your next step? That kind of statement coming from a clusterhead scares the shit out of me. Your next post you say you're going to increase your dosage of melatonin. Please talk to us, Sophia...how MUCH are you planning on increasing your dosage? |
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Title: Re: Chicken Pox Post by starlight on Sep 18th, 2006, 8:58pm jon--totally can relate to the "ooky" feeling--and somehow that IS the perfect word for it--and had crazy dreams for about 3 nights--after about a week these feelings wore off. Worked for me for a while but I had to keep upping the dose every few nights to control the HAs. Now on a stable amount--a bit high but at this point I am not increasing or decreasing--scared to do either as I have some sporadic pain free nights so just don't want to tinker with it. It is not a cure all whatsoever for me like for some but for the first month was able to manage these HA somewhat well. But my doc says that in future if I start feeling those "prodromal" feelings--not falling asleep and feeling wired till 4 AM and having no hunger to start taking the melatonin immediately. Anway hope it helps--maybe low dose like even 3 mgs would help you sleep deeply and well or even 1 mg. |
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Title: Re: Chicken Pox Post by Margi on Sep 18th, 2006, 9:04pm seriously - Sophia - please answer my question, ok? What IS your next step?? |
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Title: Re: Chicken Pox Post by starlight on Sep 18th, 2006, 9:12pm Whoah-- Margi I don't blame you for being screeching the thread to a halt for a second--I have been tired lately and am not reading as carefully as I could. I did not "see" that that way when I first read through. That does sound like it could be something to be worried about. Sophia, I hope you are OK and please tell us if you are. Star |
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Title: Re: Chicken Pox Post by starlight on Sep 18th, 2006, 9:44pm Sophia-- One other thing about the melatonin--if you are trying it, studies recommend that you take a dosage of 9-12 mg. So if you ease up to that level (you can even get 1 mg tablets) you may find relief. Some here on the board have had to go up higher--some to 18 mg. Going up higher than this can cause some depression in some people and I do not believe it is recommended to go any higher than this. Even going over the amount of 12 mg I would consult first with your doctor. The GOOD thing about it is that some lucky ones will take the 9-12 mg and get a lot of relief--some even find complete relief. Some don't and that is when you seek out a different option rather than going too much higher with it. Margi's comment got me a little concerned and I just want to make sure you are alright and find out how your meds are working for you. I can't even imagine what you are going through with 9 straight mos. of HAs. Mine are pushing 10 weeks and I am getting scared b/c they have always gone away at 6-8 weeks (for 18 yrs.). So scared that I have cut down on smoking to only a few cigs a day cause I just want them to go away. I hope the melatonin works for you. It was a mixed bag for me in that it worked for a while. But I could see after a few days that it wasn't totally working. Please let us know how you are doing. Star Edited to add: Are you using O2 and if so have you had any success with it? I am using it--it works most times--some bad nights it won't so I down coffee with the O2 and that helps me so much. I am Hoping you have a painfree night, Star |
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Title: Re: Chicken Pox Post by jon019 on Sep 18th, 2006, 10:13pm on 09/18/06 at 20:17:41, SophiaK wrote:
Hi Sophia, Good suggestion, thank you. Now you check back in, ok. Folks here wanna know you are ok. regards Jon |
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Title: Re: Chicken Pox Post by jon019 on Sep 18th, 2006, 10:17pm Thanks Star, A different brand, a different dose. We shall see. regards Jon |
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