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Title: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 9:26am Hello everyone, Just one curious question but potentially can be quite interesting and important. How tall are people who have CH? The 2 neurologists that we saw both commented that most of their CH patients are very tall, all above average. I also read on one of the research papers that most CH sufferers are the tallest in their family. This raises an interesting question. Dr Goadsby recently discovered that there is some anatomical abnormality in the cell structures of the hypothalamus of people suffering from CH. Therefore potentially CH sufferers could be born with it. The question then is what triggers the hypothalamus to start to malfunction and when. I also notice that although the most common age for CH diagnosis in men is about 30 but when looking back into the history many if not all would have symptoms of CH well before that age, just not severe enough to be recognised as CH. This may mean that the hypothalamus starts to malfunction quite earlier on, maybe in the teenage years. As the hypothalamus produces growth hormones as well as other chemicals, if it malfunctions around puberty it could cause excessive growth as in height. As for women with CH, 2 interesting observations so far, one is that they dont get cluster during pregnancy , secondly the peak occurence time is different to men, either much earlier as in late teens or post menopausal as in after 50s. This indicates hormonal effects on the function of the hypothalamus during a cycle. I wonder if the medical experts can work out what causes the hypothalamus to malfunction and when, plus what hormones can prevent a cycle as in a pregnant woman, we may come much closer to a cure of a disease or at least to prevent a cycle from becoming full blown. My DH is certainly the tallest in his family by far at 6'2. Many people here who have posted their height seems to be in the 6ft range as well. I looked at the survey on the left hand side for this information but didnt see this included. Would you mind post here about your height to see if we can get some form of a survey, please. I know this is by no mean a comprehensive survey but it may start showing some trend. The average height for Caucasian women is 5'4 and Caucasian men is 5'8. Please see this link for reference to the height chart: http://www.halls.md/chart/height-weight.htm Thank you very much for all who wish to anticipate. :) Painfree wishes to us all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by nani on Sep 10th, 2006, 9:51am I think those drs must have a limited perspective... I'm only tall when compared to 5 year olds. 5'2" when I'm standing very straight. My first cycle was at age 16, although I have some earlier memories of very bad headaches, but I can't recall how they hurt. I was 2 weeks post partum for the first cycle. |
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Title: Re: CH and HEIGHT - A SURVEY Post by Melissa on Sep 10th, 2006, 9:53am Acutally, you'll find on the cluster women's side, they're shorter than average. I'm just average. 5'7" and episodic. Oh, and some women DO get ch's while pregnant. |
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Title: Re: CH and HEIGHT - A SURVEY Post by jmorgan52 on Sep 10th, 2006, 10:05am 5'8" And you are clutching at straws here! John |
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Title: Re: CH and HEIGHT - A SURVEY Post by Theresa on Sep 10th, 2006, 10:14am 5'2" and by far the shortest in my family. I had my first cluster cycle when I was 20. |
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Title: Re: CH and HEIGHT - A SURVEY Post by lionsound on Sep 10th, 2006, 10:16am 5'6" Tall and I got clusters while pregnant. peak times in my teens (and most likely before) , twenties, and thirties. |
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Title: Re: CH and HEIGHT - A SURVEY Post by unsolved1 on Sep 10th, 2006, 10:19am Started having full blown clusters @ 19 yrs of age. I'm 6'0 - 6'1" ... but I'm not the tallest in the family by far. Both my brothers are taller than me. My 16 yr old nephew is 6'3" & still growin'. @ 6'1" & 200 lbs ... I'm the little guy !! ::) UNsolved |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 10:32am Thank you very much for posting everyone :-* I may be barking up the wrong tree here but its worth a try I guess. Lets see, so far the height thing doesnt seem to hold true with women but lets wait until some of our male friends come in with their measurements ? Australia has a much smaller population than the US, in fact there is only 14000 cases of properly diagnosed CH here, so the number of CH patients that the neurologists here have wouldnt be very large but I hope to find out more. Again thank you very much for participating. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by brewcrew on Sep 10th, 2006, 10:39am Male. Started around the age of 28. 5' 11" And Melly, 5' 7" is above average for a female. Last I heard, the average American female was 5' 4", and the average American male was 5' 8". |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 10:52am Thanks heaps Brewcrew, I should have included the average height for Caucasian males and females to clarify. Original post now modified. Anyone interested can Google search for the height chart for different ethnic groups and ages. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by E-Double on Sep 10th, 2006, 10:58am First full cycle @ 21 diagnosed at 30 Had bad headaches throughout entire life 5'10 with a stretch and about 200lbs I have brown hair and brown eyes and do not look like a lion |
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Title: Re: CH and HEIGHT - A SURVEY Post by maffumatt on Sep 10th, 2006, 11:13am 5'11 175 lbs |
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Title: Re: CH and HEIGHT - A SURVEY Post by starlight on Sep 10th, 2006, 11:15am Wow--that IS weird!!! I am 32--female--starting getting clusters when I was 14. I am the firstborn of five girls. I am the tallest person in my family at 5 foot 9 inches--even taller than my father!!!! Maybe you are onto something! Star |
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Title: Re: CH and HEIGHT - A SURVEY Post by kcopelin on Sep 10th, 2006, 11:18am 5' weight-appropriate 8) age of onset, 25...chronic at 48 kathy P.S. everyone in my family is taller than I am-except my 9 yr-old son, who is gaining rapidly. |
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Title: Re: CH and HEIGHT - A SURVEY Post by starlight on Sep 10th, 2006, 11:21am Also I am right-handed, dark brown hair, hazel eyes and I don't think I look like a lion (of course I don' know what people are saying behind my back LOL)!!! One more thing--disregard if unimportant--I had a head injury when I was 2 years old--my mother thinks that is why I get these--I fell out of a shopping cart onto my head in and hit head right above left eye (side of headaches). |
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Title: Re: CH and HEIGHT - A SURVEY Post by georgej on Sep 10th, 2006, 11:28am Male, 6'2", 185 pounds. Started when I was thirteen. Episodic. I have two brothers, both taller than I am. Right-handed, left-sided cluster. Best wishes with the survey, George |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 11:33am Hi Starlight, They do say that CH post head injury ihas been recordeed, but not as common as epilepsy. But if Dr Goadsby can prove that its anatomically determined by the abnormal cell layers in the hypothalamus then head injury may just be a trigger and not a cause. Definitely not all people with head injury develop CH or epilepsy. Painfree wishes to you sweetie. :) Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Kevin_M on Sep 10th, 2006, 11:33am Average height differs for various reasons and area. U.S. appears to be 5' 9.4" M 5'4" F Australia 5' 10.2" M 5'4.5" F Average adult height around the world (scroll down) http://en.wikipedia.org/wiki/Human_height |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 11:46am Thank you very much everyone for sharing your personal information. :-* Thank you Kevin for the link, thats very helpful. If I can deduct something meaningful out of this survey I will bring it up with Professor Spira and the Headache Australia Organisation and contact Dr Goadsby to see if its worth pursuing. I maybe able to apply for funding for serious research into the topic. So thank you all for participating. Painfree wishes to all. Take care. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Phil L on Sep 10th, 2006, 3:17pm 5'8'' 148lb 64 years old and shrinking. |
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Title: Re: CH and HEIGHT - A SURVEY Post by DavidEH on Sep 10th, 2006, 3:42pm 26 year old, 5'10, 170lbs, right hand, brown hair/eyes, right sided orbitals (sounds like a skate board move)... A bit leonine looking as well (I saw this on one site, and got a kick out of it, all I could think of was the thundercats show from the 80s)... I am the tallest in my family, but tall compared to the population, not really... I can't dunk.. |
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Title: Re: CH and HEIGHT - A SURVEY Post by davyp on Sep 10th, 2006, 4:56pm 6`3", 185 lbs, 29 years old Tallest in the family, 5 siblings. First memory of these HA aged 13 diagnosed aged 27. Dape |
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Title: Re: CH and HEIGHT - A SURVEY Post by Jonny on Sep 10th, 2006, 4:57pm [smiley=laugh.gif] |
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Title: Re: CH and HEIGHT - A SURVEY Post by jon019 on Sep 10th, 2006, 5:18pm Hi Annette, It seems we all crave the WHY of this CH crap. Every friggin thing in my lfe has been subject to intense self scrutiny. Know what? I now care less about the WHY than the WHAT. Wanna know WHY? Cuz the head injury I got being run over by a car at 4 yrs old is NOTHING I can do anything about. Cuz the hazel eyes I got (supposed prevalent in clusterheads, ha!) is NOTHING I can do anything about. Cuz the fact that I am 6' 3" and the tallest (ever) in my family is NOTHING I can do anything about. Cuz this crap started at age 26 with NOTHING previous to indicate it was coming. Cuz the pot I smoked copiously when young makes me no different than most of my contemporaries who neither have Ch nor have even heard of it! Cuz I smoke and drink (not proud of either) like a billion+ others who also have never experienced or heard of CH . Cuz there is NOTHING I did to deserve this, nor has anyone else. PLEASE do not take this wrong. I'd love to know the WHY. Maybe it would help others down the line. Just right now I'd really like to know WHAT exactly ch is. In cycle again right now, tired, bitter, and despondent. Not exactly the best frame of mind to respond to your genuine interest, just venting I guess. I wish you PF times and knowledge in your quest. Regards Jon |
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Title: Re: CH and HEIGHT - A SURVEY Post by sandie99 on Sep 10th, 2006, 5:20pm OK now... I'm 147cm tall, I had my first cycle at 21 (I'm 26 now). Apparently the average Finnish woman is supposed to be 164cm tall, so I'm below the average. But many women in my family are rather short. My mum is 157cm tall and so are many of my aunts. Sanna |
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Title: Re: CH and HEIGHT - A SURVEY Post by Guiseppi on Sep 10th, 2006, 5:32pm I'm male, 46, 5'11" tall, 195 pounds, Didn't get the kip 10's until early 20's looking back my first significant ch's were at about 17 or 18. I'll answer any survey, eventually someone will strike gold and maybe find us an answer! Good luck with this. Guiseppi |
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Title: Re: CH and HEIGHT - A SURVEY Post by Chonas on Sep 10th, 2006, 5:33pm I'm 183cm tall, I had my first attack when I was 31 years old, I was properly diagnosed 2 years later. |
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Title: Re: CH and HEIGHT - A SURVEY Post by eyepopper on Sep 10th, 2006, 7:27pm I'm 5'7" and the tallest in my family. Like Nani, the clusters started for me at 2 weeks post partum. I guess I've always wondered about that! Debby |
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Title: Re: CH and HEIGHT - A SURVEY Post by dee1623 on Sep 10th, 2006, 7:27pm 5'9" tallest in family 1st cluster at 24 while 6 months pregnant with first baby. 2nd while 8 months pregnant with second baby. Did not get diagnosed until 5th episode of clusters. Now on 6th. yahoo |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 9:13pm Hello everybody, Thanks all who have participated in the survey, your answers are very valuable. Thank you. Maybe I better clarify my position. I have posted on the Who is Who thread but I have not talked about myself anywhere else apart from the fact that I am a supporter and that my DH has CH as I dont like talking about myself but I am a General Practitioner in Sydney, Australia. Prior to seeing my DH with his first CH attack 5 weeks back, I admit that my knowledge of CH was very limited. We didnt learn much about it at Medical School as it was deemed to be too rare, unlikely to come across in entire career. However, since diagnosing DH with CH and seeing for myself how terrible the pain is and how most treatments are a bit of a hit and miss plus the general ignorance of both the general population as well as the medical profession, I would like to try my best to study and research more into it so see if we can push towards a better understanding of the condition and maybe towards developing a cure. Since there has been no proper research into hypothalamus malfunctions in relation to growth hormones and gonadal hormones such as oxytocin and prolactin during pregnancy and testosterone level during a cycle, I thought I may start taking a closer look at it. CH is so rare that its very hard to get a large sample for meaningful testing. I believe here I have the best chance of looking at a cross section of the CH population. Being a medical person, I am in a position to push it further if it seems to be worthwhile. I cant promise it will lead to a cure but at least its an effort in the right direction for all sufferers. Again thank you very much everyone for participating. I think its starting to show an interesting trend. I will summarise the information once we get more data to see more clearly. Have a great day everyone and painfree wishes to all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 9:33pm on 09/10/06 at 17:18:12, jon019 wrote:
Hi Jon, I am sorry to hear that you are in cycle and not feeling well. I can understand how you feel. When in the middle of terrible pain all you care about is how to make it go away. But once you feel a bit better, you may want to read this thread, I have tried my best to convey from what I have learnt as to what is CH. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1157585063 Sending you good vibes and painfree wishes. Take care Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Barry_T_Coles on Sep 10th, 2006, 9:58pm Male 57 years young; ;;D5' 6.5" 1.724m second shortest of 8 children, shortest in family big ( little) sister 5' . First cycle aged 51, second cycle aged 56 & turned chronic. No previous bad headaches other than well deserving hangovers. Have never smoked pot or taken drugs other than prescription. No one else in the family suffers CH. Regards Barry |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 10th, 2006, 10:08pm Hi Barry, Thats interesting that you started your first CH cycle at 51, apparently thats rare in a male. Thanks for your input. :) Best wishes to you all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by thomas on Sep 10th, 2006, 10:16pm 6'4" 260 lbs. I'm pretty small compared to the rest of my family. ;;D |
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Title: Re: CH and HEIGHT - A SURVEY Post by jon019 on Sep 10th, 2006, 10:19pm Thanks Annette. I have got no problem whatsoever with you. You saw my frustration, it aint pretty but sometimesI just gotta vent. Looking forward to your future posts. Regards Jon |
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Title: Re: CH and HEIGHT - A SURVEY Post by starlight on Sep 10th, 2006, 10:43pm BB-- Good luck with your research! As someone who suffers these headaches I am glad you are interested in trying to help cluster heads. If there is one thing for sure cluster headaches seem damn good at trying to hide many secrets from those who care to question them, where they came from and why, but it is only through asking questions that we are going to find answers so I am very happy that you are asking questions. (And I have always thought it was weird that I am the tallest person in my family :) ) Good luck, Star |
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Title: Re: CH and HEIGHT - A SURVEY Post by Nick8977 on Sep 11th, 2006, 12:28am Male, 6'4" 165lbs, tallest in family, 27yrs (Middle of my 1st cycle) |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 11th, 2006, 12:30am Thanks Starlight and Jon for your encouragement. :-* and please Jon, vent away whenever you feel the need to, its good for you :) I realised that I am in an unique position to try to understand CH not just from an academic medical point of view but from a sufferers point of view too as my DH has CH. Most doctors including neurologists only learn through books and research results and not have a chance to witness CH in progress day in day out like I do. I ask my DH a lot of questions every day and learn a lot from him. He told me that there are many points he would not have paid attention to or think that they are important unless I ask directly. I wish to use this priviledged knowledge to help others. Thank you all who have helped us. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by vig on Sep 11th, 2006, 9:46am 5' 5.5".... all 4 of us were runts.... |
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Title: Re: CH and HEIGHT - A SURVEY Post by Bond007 on Sep 11th, 2006, 10:53am I'm only 5'9" and by far the shortest in my father's family, but I'm much taller than my mother. I did have 2 unusual growth spurts during puberty, which by the way started at the early age of 11. By the time I was 12, I had reached my full height of 5'9", growing almost 1'6" in 2 years. My first CH hit when I was 19. I suppose I could go on.... brown hair/hazel eyes. I was hit by a car when I was 4 & suffered some head trauma, but was never treated for anything. I also fell when I was 5 in a shopping mall and had 4 stitches in my chin. Then, I was in a car accident without a seatbelt when I was 7 and hit my head on the roof of the car. Man, I'm shocked I'm still alive!!! :o |
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Title: Re: CH and HEIGHT - A SURVEY Post by Margi on Sep 11th, 2006, 12:50pm Mike is 5'7.5", CH onset early 20's. He has blue eyes, blond hair and looks nothing like a lion. His younger brother is 6'1" and does not have clusters. Their father did, we think, but was never diagnosed and died at a young age. He was a shortie too, though, sorry. :-/ Thanks for what you're doing, Annette - it's folks like you who WILL someday uncover the secret. Keep up the great work! |
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Title: Re: CH and HEIGHT - A SURVEY Post by wogdoggy on Sep 11th, 2006, 2:07pm six foot 5 ..48yrs old 220lbs. |
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Title: Re: CH and HEIGHT - A SURVEY Post by Bob P on Sep 11th, 2006, 6:20pm 6'4" - 230 lbs. (10th grade football I was known as 230 pounds of charging marshmallow) |
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Title: Re: CH and HEIGHT - A SURVEY Post by Racer1_NC on Sep 11th, 2006, 6:35pm 6'3" 235lbs....... Bill |
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Title: Re: CH and HEIGHT - A SURVEY Post by LeLimey on Sep 11th, 2006, 7:32pm 5' 1 and a half inches tall CH commenced at 38 (Now 41) Jasper my son 45 inches tall CH commenced at 3 (Now 5) Jasper see's PG by the way Annette. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BlueMeanie on Sep 12th, 2006, 7:25pm My thoughts are, instead of searching for commonalities between Clusterheads, think about what is different between Clusterheads and those that don't get Clusters. No disrespect to trying, and I wish you'd find something one day, but every family has a tallest member ;) and obviously every family doesn't have a Clusterhead member. Just a thought. Keep up the good work and hopefully someone out there just may find something. By the way, I'm the tallest, but the rest are girls. ;) |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 12th, 2006, 9:36pm Hi BlueMeanie Dr Goadsby is already looking at what are the differences between a clusterhead and someone who doesnt have cluster, and so far he found 2 things: 1- The hypothalamus in cluster heads malfunctions especially during a cycle, producing abnormal amount of various hormones and neurotransmitters. 2- The hypothalamus of cluster heads has an abnormal layer of cells in the suprachiasm, these cells become active and fire abnormal signals during an attack. People who dont have cluster dont seem to have this. The next question is : 1- If cluster heads have extra cells or abnormal cells that people without clusters dont, then were they born with it ? or do these cells develop at some stage and when and why. 2- What triggers these cells to fire abnormally to make the hypothalamus malfunction when they do. Maybe the ideal situation is to scan everyone's brain but there are problems with this because: 1- Cost, these scans are very expensive and there is not enough funding to scan everyone. 2- Radiation, radiation by scan to the brain is a significant amount, cant just willy nilly do one for fun. To compare scans between cluster heads and the normal population means that one needs to scan a sizable number of people who dont have clusters to determine what is normal. Its very hard to get volunteers who dont have anything wrong with them to agree to uncessary radiation to their brains. 3- Need to work out exactly what one is looking for and why and how that is going to help. Then need to work out a proposal for the study that will then be scrutinised by the Medical Board, the Research Board, and the Health Department before one can get approval for it and then still the problem of getting enough funding. I am only a GP so all of the above are way beyond my scope. I can only do surveys, ask heaps of questions, read heaps of research results and try to think laterally and brain storming to see if maybe there is a different/new angle that one has not looked at which may help. Then if something seems to be significant enough, I can bring it up to the specialists, the big research institutions for them to consider to see if its worth pursuing. Again I maybe clutching at straws here and/or barking up the wrong tree totally but at least I am trying to do something within my ability and knowledge. So thank you very much to everyone who have participated and who have posted in reply. All comments are very helpful and much appreciated. Painfree wishes to you all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 13th, 2006, 9:42am Hello all, I am going to do a summary of the result so far Males: total number of male members posted their height is 22 1- 5'8'' 2- 6'0'' 3- 5'11'' 4- 5'10'' 5- 5'11'' 6- 6'2" 7- 6'2" 8- 5'8" 9- 5'10" 10- 6'3" 11- 6'3" 12- 5'11" 13- 6'2" 14- 5'6.5" 15- 6'4" 16- 6'4" 17- 5'5.5" 18- 5'9" 19- 5'7.5" 20- 6'5" 21- 6'4" 22- 6'3" As the census says that the average Caucasian male is 5'8" tall, only 3 out of 22 are slightly below average, but it would be interesting to look further to see if they have shorter parents ( ie still tall for their genes ). And 2 are of the average height. The rest 17 out of 22 are all above average, and 6 are the tallest in their families. So out of 22: 9.7% are of average height, 13% are below average height, and a whopping 77.3% are above average. Out of those who are taller than average , 45.5% are 6ft or taller. And 27.3% are the tallest in the family. So with only a tiny sample size of 22, I can already see that most of our male clusterheads here are taller than average. Thats interesting, isnt it? I will do a summary on the womens measurement a bit later. Thanks again and painfree wishes to all. Take care folks! Annette PS : Please keep posting if you can so that I can get a larger sample size for a more accurate percentage. Thanks :) |
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Title: Re: CH and HEIGHT - A SURVEY Post by Melissa on Sep 13th, 2006, 10:35am on 09/13/06 at 09:42:50, BB wrote:
It's already been documented that clusterheads are of a higher than average height. Are you looking for something else? |
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Title: Re: CH and HEIGHT - A SURVEY Post by starlight on Sep 13th, 2006, 1:14pm Annette-- Thank you for your research. I thought it might be worth mentioning that I am taller than everyone in immediate family, all four grandparents, all aunts and uncles (except one uncle), and 12 cousins (five of whom are male) all are grown. There are two male cousins who are still growing who have the tall uncle so I don't know what their height will be. Star |
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Title: Re: CH and HEIGHT - A SURVEY Post by artscribe on Sep 13th, 2006, 2:40pm I'm male, 44 y.o., and 5'11". I had my first episode at 13, but I wasn't properly diagnosed until I was 41. I'm not the tallest in my family -- one brother and my father are taller. I'm left handed, and have right side headaches. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 13th, 2006, 6:10pm on 09/13/06 at 10:35:11, Melissa wrote:
The reason why I am doing this survey is explained in the original post. Its documented but not looked at as to if this due to hypothalamus malfunction around puberty time causing excessive growth hormones. If this is the case then young people with abnormal growth hormones and growth spurt and excessive height who may or may not complain of frequent/unusual headaches can be scanned to see if they have that abnormal layers of cells that Dr Goadsby found. Plus then one can look further into what happens during those time to trigger the hypothalamus to malfunction for eg long lasting viral infections , such as the survey Starlight is doing. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 13th, 2006, 6:12pm Thanks Artscribe, I will note your measurement down. Uhmm... another person with symptoms in the teenage years .. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Melissa on Sep 14th, 2006, 9:13am on 09/13/06 at 18:10:39, BB wrote:
Thanks for the explanation. I didn't quite understand the first post, so posting it again helps. I will be honest with you, I find that when a physician starts asking questions here, supporter or not, and words posts in a way that come off to me as being sort of condescending (this is just how I read it), I can't help but be defensive and inquisitive, especially since we've been poked, prodded and questioned so much already. This is not a personal attack against you, I don't know who you and have never met you, so don't think I'm out to get you, because I'm not. I also want to ask why you didn't post the results of the females too as well as the males? I've found here that there are many more female cluster sufferers than what is written in medical textbooks, so I took offense to giving my information and then having the results not posted like the males. Is it because of the idea that males only get CH's determines what gets put out there and what doesn't? Because that makes me mad and then I just want to cry from frustration. Sorry for the vent, but I had to get that out... Melissa |
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Title: Re: CH and HEIGHT - A SURVEY Post by BMoneeTheMoneeMan on Sep 14th, 2006, 10:25am I am relatively short, 5.10. My Bro and my Dad are both taller than me. I have big feet though. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 14th, 2006, 10:28am on 09/13/06 at 09:42:50, BB wrote:
Melissa, Please read my posts before jumping into conclusion. I am doing all this for the benefit of all CH sufferers but I have a fulltime job and 2 young children to look after as well and my DH is still in cycle and I dont have time to do everything all at once. I did the male summary first as I had 22 people responded so its a large enough number to summarise on. I so far had only 8 answers from the women so the picture wont be clear, I am simply waiting for more to post so that the percentage will make more sense. Please understand that I am not talking down to anyone here. This is exactly the reason why I didnt want to introduce myself as a doctor as reading the Board I already sensed that a lot of people have had problems with certain doctors and that the general feelings towards the medical profession is not good. Maybe I will just go back to my supporters role and leave the advices to the experts. I am sorry if I have offended anyone in speaking from a medical point of view. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Melissa on Sep 14th, 2006, 10:37am No, that's OK. I did read what you wrote about posting the summary of the womens results, a bit later. Guess I am impatient and am a bit raw lately due to outside influences right now. Anyway, I am the odd woman out here, I will no longer post to this thread. People are responding to you, and it is positive, so I will bow out. You stay Annette, and it's nothing personal like I said. I'm the problem, so I'll go. Take care and I'm sorry to have stirred anything. Melissa |
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Title: Re: CH and HEIGHT - A SURVEY Post by Margi on Sep 14th, 2006, 10:48am Please, both of you stay, Mel and Annette. This is an interesting thread. Mel, you're making some really good points here, I always enjoy reading what you write. And, Annette - trust me, I am finding it SO intruguing to meet a supporter who is a doctor! You can do SO much to help the cause. One thing you said, though, does make me a bit sad though. My husband fits neither one of the profiles for the height or viral surveys going on. He's short and has had no viral infections, yet he still gets demonized with cluster. I really hope that his results won't get pushed aside, just because he doesn't fit the bill. Because if it's going to be declared that the cause of cluster is viruses and growth spurts I'd have to personally argue that point. Please don't throw the baby out with the bathwater here. Maybe BMoney's onto something. Mike has big feet too and, if I remember correctly, Mel's feet are a little large too. Maybe the clusterheads are all from a big-footed alien tribe. (Mel, I'm teasing you - you have beautiful feet. ;;D) |
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Title: Re: CH and HEIGHT - A SURVEY Post by aubmari on Sep 14th, 2006, 6:54pm I think that those doc's need to research a little more or maybe I am just the exception??? I am a female 30 yrs old and 5'10' so yah tall but I started getting them at 24 or 25 and my last cycle was when I was 5 months pregnant. My sister also has them and she is 5'7 and got her first cycle after a sx she had. She is 29 years old.??? |
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Title: Re: CH and HEIGHT - A SURVEY Post by Jonny on Sep 14th, 2006, 8:05pm 5' 1" - 101 pounds- size 13 foot. Im the King of the big-footed aliens. |
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Title: Re: CH and HEIGHT - A SURVEY Post by big guy on Sep 14th, 2006, 9:43pm I'm 6'8" tallest one in the Family although all are tall. Size 18 shoe. Big Guy |
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Title: Re: CH and HEIGHT - A SURVEY Post by Jonny on Sep 14th, 2006, 10:18pm on 09/14/06 at 21:43:59, big guy wrote:
5' 1" with a 13 beats you, back off of my gig, Bitch......LOL ;;D |
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Title: Re: CH and HEIGHT - A SURVEY Post by georgej on Sep 15th, 2006, 3:08am on 09/14/06 at 22:18:37, Jonny wrote:
I knew you were an unusual person, Jonny, but I didn't know you were a hobbit. ;;D George |
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Title: Re: CH and HEIGHT - A SURVEY Post by chopmyheadoff on Sep 15th, 2006, 3:33am 6'2 - 15 stone - size 12 feet ( u know what that means ;) ) yes im the tallest in my family and my clusters started at 20 (im 27 now) interesting post btw annette 8) |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 15th, 2006, 5:15am Melissa, Please dont go. I mean it. This is a Board for CH sufferers to come seeking advices and support. I realised that its not a Board for medical quest. However, as I have started this survey and members are still posting , I will continue to update the information and try to come to some sort of a summary, for both men and women. Margi, I certainly do not play down anyones measurements or symptoms. CH is so diverse and there are so many associated features that by no mean a simple record of height or a detection of certain viruses will mean that its the only answer for CH. I was only curious when seeing some unusual trend and just wanted to follow it up. Height is one, viral infection is one, sleeping pattern is one, appetite seems to be another and well, who knows it looks like foot size may be next on the list ! As I said before, I maybe grasping at straws here and it may turn out to be absolutely nothing, but I wouldnt want to quit grasping in case one day the straw might turn out to be the one that breaks the beasts back. God bless and painfree wishes to us all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 15th, 2006, 5:18am on 09/14/06 at 22:18:37, Jonny wrote:
Jonny, you are gorgeous ! LOL ! Annette PS: Would you hit me on the head if I dare call you Papa Smurf ? ;;D |
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Title: Re: CH and HEIGHT - A SURVEY Post by big guy on Sep 15th, 2006, 5:30am Jonny, I'll back off. I wouldn't want to STEP ON YOUR TOES. LOL After all the prednisone I have been on I am the one with Hobbit feet Big Guy |
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Title: Re: CH and HEIGHT - A SURVEY Post by chopmyheadoff on Sep 15th, 2006, 6:53am annette - you keep up the good work girl - it amazing to see someone fight our corner with such a passion. those who dont appreciate that - should do chopster |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 15th, 2006, 8:51am Thanks so much Chopper for your support :-* BTW, its so confusing, I dont know what to call you, Chop, Chopper, Choppa, Chop Chop .... :P May I call you Chuppa Chup? You are certainly sweet enough ... ;) Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 15th, 2006, 9:29am Hi everyone again Now on a more serious note, please allow me to do a summary on the womens measurements : FEMALES: So far we have 11 ladies who kindly posted their height 1- 5'2" 2- 5'7" 3- 5'2" 4- 5'6" 5- 5'9" 6- 5' 0" 7- 5'0" 8- 5'7" 9- 5'1" 10- 5'10" 11- 5'7" Given the concensus that the average height for Caucasian women is 5'4', 5 are below average and 6 are above average with 2 being the tallest in their families. So 45% are below average and 55% are above average, with 18% being the tallest in the family. Another interesting point is several of the women started their first cluster around time of pregnancy or childbirth, which is different from what I read in another thread that cluster did not seem to occur suring pregnancy. Either way seems like there is some hormonal links to the start of cluster development in women too, at least in those who have had children. Doesnt seem to be obviously growth hormones but maybe Oxytocin or Prolactin which are hormones related to pregnancy and breast feeding. I dont know what to make of these results yet. There seems to be a trend but not yet clear. I guess we need more data. Thank you very very much everyone who have participated. I will continue to update every few days or so if we continue to get more information. Cheers and painfree wishes to all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 20th, 2006, 9:24pm Hello everyone, Been back at work putting in 12 hrs shift so I have been a bit slack with this, my apology :) There have been another 5 male members who kindly posted their measurements so here is the update: MALE: total number 27 Males: total number of male members posted their height is 22 1- 5'8'' 2- 6'0'' 3- 5'11'' 4- 5'10'' 5- 5'11'' 6- 6'2" 7- 6'2" 8- 5'8" 9- 5'10" 10- 6'3" 11- 6'3" 12- 5'11" 13- 6'2" 14- 5'6.5" 15- 6'4" 16- 6'4" 17- 5'5.5" 18- 5'9" 19- 5'7.5" 20- 6'5" 21- 6'4" 22- 6'3" 23- 5'11" 24- 5'10" 25- 5'1" 26- 6'8" 27- 6'2" - Percentage of male CH taller than average 70.37 %. - Percentage of male CH of average height 7.40% - Percentage of male CH shorter than average 22.23% - Percentage of male CH being 6ft or more ie significantly taller than the average is 48.50%, almost half. Looks like there is a signigicant number of male CH who are taller than average and half of them are taller by a significant amount as well. I will post this to the Neurology Dept at our Research Hospital and see what are their comments. Maybe there is some link to excessive growth hormones from the hypothalamus? Please note that this is not a conclusion of any kind, just an observation to see if there is any link to hypothalamus malfunction starting as early as puberty prior to become fullblown later in adulthood. However this doesnt seem to be as clear with female CH, so maybe there is another link to testosterone levels which peak at puberty also. While with the women, there seem to be some link to around the time of pregnancy, childbirth, menopause etc, again pointing to a link with certain hormones possibly prolactin, Oxytocin and oestrogen. Thanks all heaps, painfree wishes to all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 26th, 2006, 7:37am Bump for Spot ! :) Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Spoticus on Sep 26th, 2006, 8:38am Thanks BB, I seem to fit into the taller category. I am 6'2", the tallest in any of my extended family. My dad is 5'9 1/2" and my brother about the same. Pretty much all the women n on both sides of my family are short 5'-5'4ish. Had my first CH cycle at 20 and I seem to be episodic. No one that I know of in my family has any history of CH/migraine. |
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Title: Re: CH and HEIGHT - A SURVEY Post by jmorgan52 on Sep 26th, 2006, 2:09pm BB As I stated before I am 5'8" (and only size 8 feet :o ) But from age 8-12 I was head and shoulders taller than any of my classmates. But by 12 or so I was just about as tall as I was going to get. Around age 11-12 I got Glandular Fever, numerous bad throat infections, Hepatitis A (Yellow Jaundice), Dysentry, and several huge and nasty boils (still got some scars from them) one after the other. I was one very sick kid for about 6 months or more. I was stuck with more needles and had more xrays than I care to remember. The Pathology lab at our hospital struggled to find what was wrong with me. The interesting thing I recall is that I never grew much after that and by age 14 I was pretty much average height and all my mates had caught up or overtaken me. I started getting migraines around that age too. Might mean something, or maybe not? John |
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Title: Re: CH and HEIGHT - A SURVEY Post by SteCo on Sep 26th, 2006, 6:54pm BB, Leave no stone unturned with CH. Worth a shot and thanks for the effort! on 09/10/06 at 09:26:24, BB wrote:
This is me. I had not heard of this before. 6'2" Only one in family (including extended) w/ CH. Right handed, right side CH. Had a couple of left side hits last cycle - new to me. Always been HA prone (non CH) for whatever reason. CH's became intense (and diag.) late 30's.....might have had mild version late 20's-early30's; SteCo............................. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 27th, 2006, 1:10am on 09/26/06 at 14:09:57, jmorgan52 wrote:
Hi John, Thanks for sharing your story. Its so intriguing to see some of the similarity between CH sufferers. Although your final height is average but you did have that growth spurt where you were taller than all your friends of the same age at adolescence. Also you became very ill with various bad viral infections by the sound of it. Starlight had a thread on viral infection and the possible link to CH starting. I believe one needs to ask heaps of questions and get large enough sample results to start seeing the trend. So thank you everyone again for posting. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 27th, 2006, 1:12am I also received this information from Lisa "Major" regarding her husband's measurement. Thanks Lisa :) Hi Annette, " My name is Lisa ("Major" on this board and on the Canadian one). I don't post often here, but do on the Cdn site. My husband is the sufferer, and I am a supporter too. I thought I'd give you my husband's info: 6'2" (not the tallest), 225 lbs, right handed, right sided clusters, onset at age 37, no previous signs of CH, lots of head injuries, blond hair, hazel eyes, size 10.5 feet. " I will be back in a little while to update on these information again. Please continue to post your measurement here if you havent and would like to share. Thanks all and painfree wishes to all of us. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by clusterwife on Sep 27th, 2006, 2:03pm He is 6'5", 225lbs, suffers on both sides. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BMoneeTheMoneeMan on Sep 28th, 2006, 8:28pm Annette, A couple of things. First, 5.8" sounds a little low for average caucasian. Also, do you think it would be better to use the average of all races since this study is mostly blind? Secondly, though obviously quite small, I think this is pretty astonishing so far. Even if you said the average is 5.10", there would still be a large number above average. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 30th, 2006, 9:12am Hi BeMonee, Thanks for your comment. :) The average height I used for Caucasian males is from the international surveys. I googled several sources and they all said the same. Also interestingly cluster seems to affect mainly Caucasians. I looked at the survey on the left hand side and I would say most are Caucasians. If I use the average height across the races it may not be accurate as it would not represent the majority of the sample here. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Sep 30th, 2006, 9:22am Hi everyone, Updated information : We now have the height measurement of 31 male CHers. 1- 5'8'' 2- 6'0'' 3- 5'11'' 4- 5'10'' 5- 5'11'' 6- 6'2" 7- 6'2" 8- 5'8" 9- 5'10" 10- 6'3" 11- 6'3" 12- 5'11" 13- 6'2" 14- 5'6.5" 15- 6'4" 16- 6'4" 17- 5'5.5" 18- 5'9" 19- 5'7.5" 20- 6'5" 21- 6'4" 22- 6'3" 23- 5'11" 24- 5'10" 25- 5'1" 26- 6'8" 27- 6'2" 28- 6'2" 29- 6'2" 30- 6'2" 31- 6'5" - Percentage of male CH taller than average 77.41 %. - Percentage of male CH of average height 6.45% - Percentage of male CH shorter than average 16.14% - Percentage of male CH being 6ft or more ie significantly taller than the average is 54.8%, more than half. Its looking more and more interesting now. If this can be proven to be related to growth hormones, I guess if you have a family history of some types of neurovascular headaches, and yourself or your children suddenly gets a growth spurt and grow really tall, you may want to get some blood tests and scan done to see if you are at risk. Just brain storming so its nothing scientific yet, will need a lot of thinking and more researching into to make real sense out of the data. Thanks again heaps everyone. Much appreciated. Painfree wishes to us all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Carl_D on Oct 1st, 2006, 9:27pm Hmmm... I am 5' 7", and weight has fluctuated in the past 10 years between 200 and 172lbs (currently 178). Mom was 5' 2" and dad 5' "6. I was a short shit and never looked my age until I got my growth spurt in late teens. Clusters started at 17, and just passed my 19th anniversary. Was chronic 8 years before remission feb of this year and started back into cycle late july. As far as testosterone, was diagnosed with low levels I think it was 3 years ago and put on HRT. After a year was pulled off of it and was fine. Went through massive sleep deprivation this time last year due to increasingly worsening insomnia and stayed sick for 7 months. Was told a few months ago my levels appeared to be dropping again and they did more labwork. Came back that my testosterone is once again dropping and so have been back on Androgel HRT for about 2 months now. Interesting survey though I must say. I think it is funny how a CHead is 'supposed' to have certain features, but people who suffer from it come in all shapes and sizes. Peace, Carl |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 2nd, 2006, 6:04am Hi Carl, Thanks for posting your measurement. Although you are not as tall as some CHers here but you are talller than both your parents. There is still a limit to how tall one can get depend on the genetic make up. Its very interesting that your testosterone seems to drop every time you are in cycle, and that you have some form of a sleep disorder. Both are regulated by the hypothalamus. I guess the reason that CH is so diverse in how it affects people is that its caused by the hypothalamus malfunctioning. The hypothalamus is the body's master clock and its main function is to regulate most of the body's chemicals including hormones via neurotransmitters. As it is involved in so many of the body's functions that it can affect just as many when it goes bad ! I will update the information a bit later. Take care and painfree wishes to you. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Trond on Oct 2nd, 2006, 7:41am Hi, Annette, Here's my info for you. I am 1,9 meters. Tallest in my family and the only one with CH. CH from age 17 Chronic from age 40 Several head traumas. Regards Trond |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 2nd, 2006, 9:07am Hello Tron, Thanks for your reply. 190 cms is 6'3" BTW. Did you suffer from the head injuries before or after developing CH ? Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by roy21302 on Oct 2nd, 2006, 11:52am Hi Annette, bit late onto this one, I am 5ft 11in, lot small smacks in head nothing serious. Started Ch age 30 now 60 --------------------------------------Cheers Roy |
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Title: Re: CH and HEIGHT - A SURVEY Post by Trond on Oct 3rd, 2006, 6:24am Hi Annette, nice to meet you Heres a brief head injury story: -Have sporadic CH twice a year from aprox.1980 -Had a bad car accident in 1983(head injury) but it didnt change cluster patterns. -got an wiphlash in 1990(car accident) -1991 was my first really bad cluster year, 4 months with severe attacks. -1993 had an accident in the military, fell down a concrete stair and get knocked out. Resulted in a neck injury(C4andC5) and 2 years of reading problems, dizziness etc. - from 1994 to 2002 Cluster periods 16weeks once a year. -Got diagnosed(thanks to this homepage) in 2001 and was put on Verap. -2003 severe car accident again(at the highway) -cant really say if this latest accident changed annything clusterwise, but got chronic in 2003-04. -This year I'm having my worst CH experience ever.:4 night's of continued sleep since April, and 4-8 attacks a day, still accelrating.(I think) I cant really say that the accidents have done anything to my CH, but as I said before they dindt help..... Trond Ps: Dont make the conclusion from this that I am a bad car driver......all the above accidents was not my fault.....I am an exellent driver ;;D ;;D |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 3rd, 2006, 8:52am Hello Roy, Nice to see you here, and thanks for the info. Hugs Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 3rd, 2006, 9:30am Hi Trond Nice to meet you too. Thank you very much for the detailed history. Its very interesting. There have been reports that head injuries can cause CH but it looks like it has not done so in your case. I wonder if they meant serious head injury that would cause some form of real structural damage only? I hope to get that cleared up so that parents with children who bump their head a bit wont get too worried uncessarily. And we believe that you are an excellent driver, of course, just give us the head up as to when you will be on the roads next wont you ? ;) ;;D Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 3rd, 2006, 9:36am Time for another update 1- 5'8'' 2- 6'0'' 3- 5'11'' 4- 5'10'' 5- 5'11'' 6- 6'2" 7- 6'2" 8- 5'8" 9- 5'10" 10- 6'3" 11- 6'3" 12- 5'11" 13- 6'2" 14- 5'6.5" 15- 6'4" 16- 6'4" 17- 5'5.5" 18- 5'9" 19- 5'7.5" 20- 6'5" 21- 6'4" 22- 6'3" 23- 5'11" 24- 5'10" 25- 5'1" 26- 6'8" 27- 6'2" 28- 6'2" 29- 6'2" 30- 6'2" 31- 6'5" 32- 5"7" 33- 6'3" 34- 5'11" - Percentage of male CH taller than average 82.35 %. - Percentage of male CH of average height 5.88% - Percentage of male CH shorter than average 11.77% - Percentage of male CH being 6ft or more ie significantly taller than the average is 52.9%. Thank you very much. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 3rd, 2006, 9:53am Hello again, Someone here who is very wise and observant has PM me and brought up a couple of very valid points that have got me thinking and now posting about them. ( You know who you are so thank you :-* ) The first point is height is a very personal thing and some people may be reluctant to post it in a public board, therefore causing the survey to be biased. I hereby invite people to PM me privately with the information and can request their names witheld if that would make things more comfortable. Thank you very much. The second point is that I am not concentrating on height alone, from the prevalence of height I am trying to see if there are strong links to hormonal disturbances in CH, particularly growth hormones. Growth hormones are most active around puberty and drop off before adulthood. They also are the ones beside genetic make up that can cause excessive height . Therefore if there is abnormal growth spurt around puberty or excessive height at adulthood, then maybe growth hormones should be looked at more closely in clusterheads. I hope that clear things up. Thanks againeveryone for posting. Painfree wishes to you all. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Carl_D on Oct 3rd, 2006, 8:23pm on 10/02/06 at 06:04:10, BB wrote:
Actually, I had been chronic for 6 years before the testosterone dropped a couple of years ago, but it got down to dangerous levels and had to go on the HRT. At least that I know of. While I knew the insomnia was linked to the hypothalamus, I didn't realize the testosterone levels are affected by the hypothalamus, but it makes sense. Peace, Carl |
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Title: Re: CH and HEIGHT - A SURVEY Post by leftsideonly on Oct 23rd, 2006, 3:19am 5'10" tall first cluster around the age of 27. I'm the shortest and the second born Andre |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 23rd, 2006, 7:10am Thanks Leftsider, Will add your info and update a bit later. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by chewy on Oct 23rd, 2006, 7:35am What is the point to all this? Where is going? |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 23rd, 2006, 7:50am Dear Sir Chewy, To see if there is a link between CH and Growth hormones dear Sir :) The results are being passed onto the Prince Of Wales Hospital, the Neurology Clinic, to Professor Spira who is the top CH specialist in Australia. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Fatcat on Oct 23rd, 2006, 8:51am Can I join the party? Male 5ft 9" 176lbs First bout aged 18 Diagnosed aged 25 Now aged 32 |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 23rd, 2006, 8:58am Of course Fatcat, Thanks for joining :) BTW, you are NOT fat :) Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by RichardN on Oct 23rd, 2006, 11:41am Hi Annette & thanks for your efforts. I'm 59' (60 in March) 6'1" 175 lbs My mom was 6', dad was 6'2", sister 5'11' I'm a "head trauma" CH'er. Hit my head (approx 5" above right eyebrow) 1/01 . . .ha's started from then on . . . lots of tests (all normal of course), non-working meds. By the time my wife found this site (2/02), was having 6-8 attacks per day, Kip 5-9 . . .and sometimes 3-5 per night . . . . a real basket-case. Info from this site got me a script for Verapamil and 02 (my life-saver). Doc (correctly) wouldn't prescribe Imitrex without further tests . . . stress tests, heart cath (which nearly killed me), that showed arterie blockage . . . . not enough for a stint, but enough to rule out triptans as abortive. Appreciate your efforts, Be Safe, Richard |
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Title: Re: CH and HEIGHT - A SURVEY Post by Fatcat on Oct 23rd, 2006, 12:37pm on 10/23/06 at 08:58:32, BB wrote:
[smiley=laugh.gif] Thanks Annette, I'm flattered. The nickname comes from the number of free lunches I used to wangle when I was working in the City (of London). Happy days ;;D Fatcat |
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Title: Re: CH and HEIGHT - A SURVEY Post by LeeS on Oct 23rd, 2006, 1:57pm Hey fatcat - where've you been? You in cycle? If not - you owe me a beer (or two); I'll buy the lunch (again) ;;D Sorry Annette - please let normal programming resume :) -Lee |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 23rd, 2006, 3:05pm on 10/23/06 at 13:57:17, LeeS wrote:
Yo Lee, only if I get lunch and beer too ;) Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 23rd, 2006, 3:12pm Hi Richard, Thank you very much for your information. I am glad to hear that Verap and Oxygen are working well for you. Does Oxygen help to abort most of the hits? Best wishes and PFDAN to you. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by paul2006 on Oct 23rd, 2006, 4:07pm Another tall one for you ;) I'm chronic, 49, 6'4" 14.5 stone [203 lbs for you yanks!!] I've always had a very bad, irregular sleep pattern since a kid. Just as an aside, I am not particularly keen on many doctors either [apart from my GP who is brilliant and the Neuro I see]. I was in hospital overnight for tests [on breathing] a few weeks ago and heard a consultant who had just examined me telling his subordinates that CH are migraines and are treated as such. I called him over and asked him what he really knew about CH. Despite a letter from my GP detailing the meds I took to hospital with me [verap now 720mg & imigran injections], the consultant had tried to convince me I was mistaken in the amount of verapamil I take each day. This in front of 4 junior docs, 2 nurses and a ward full of other patients and visitors. He wanted to give me 240 of verap A DAY. I said this would be dangerous for me - the sudden drop in dose - but then, who am I to question a consultant. I refused to hand over my meds to the nurse, saying if I did, the hospital might end up being sued for negligence by my children. My friend later brought in some printed info on CH and handed it round the staff on the ward. It was a nurse who came and apologised after reading the info. She said it ought to be given out with the info they get about other 'rare' conditions. She asked me lots of questions which I didn't mind answering as she genuinely wanted to try and understand CH. Anyway, rant over. Perhaps you ought to have asked if people are chronic or not?? Might make for some even more interesting results. Keep on asking the questions!! |
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Title: Re: CH and HEIGHT - A SURVEY Post by Turts on Oct 23rd, 2006, 4:16pm 31 yrs now started at 18yrs 6 feet even or 182cm. |
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Title: Re: CH and HEIGHT - A SURVEY Post by Fatcat on Oct 24th, 2006, 3:13am Yody Lee! Well, it's something of a cycle. Had exactly the same thing 2 years ago (at exactly the same time). I'm a bit iffy on the drink. I have an interesting theory as to why I might have skipped this "cycle" last year. Will catch up with you in London. Fatty |
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Title: Re: CH and HEIGHT - A SURVEY Post by Polly_C on Oct 25th, 2006, 7:10am Interesting questions. Just thought Id put my view to the quote below: btw Im a 34 year old woman of average height currently in cycle and 34 weeks pregnant. My CH started in my early 20's. "As for women with CH, 2 interesting observations so far, one is that they dont get cluster during pregnancy , secondly the peak occurence time is different to men, either much earlier as in late teens or post menopausal as in after 50s. This indicates hormonal effects on the function of the hypothalamus during a cycle." My point is that from what Im finding out about this condition it's never so cut and dried and simple as this makes out. should we really be making statements like the one above on a support site? Im not sure how helpful it is - it doesnt help me to read this. I know of other CHers who've had cycles during pregnancy, childbirth and childbearing years and there'll doubtless be others out there who need our support and who wont get that from reading statements that dismiss the possibilty of their suffering. Surely what's interesting is that there appears to be NO steadfast commonalities between CH sufferers. |
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Title: Re: CH and HEIGHT - A SURVEY Post by Bethany1 on Oct 25th, 2006, 9:55am I'm 5'10 tallest one in my family. Ch started when I was about 21.. no history of ANY kind of headaches in my fam. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 25th, 2006, 10:39pm Hello Polly, Thank you for your post and I am sorry to hear that you got offended by one sentence I wrote. Firstly in my defence, I need to point out that it wasnt meant as a statement , it was only an observation. I did not intend it to be a be all or end all type of comment, but just a comment so that people can then tell me if its accurate or not accurate. CH is a rare condition. Because we are here where CHers from all over the world unite that it seems there are many, but compare to other conditions even the "cousin" migraine, it is quite rare. Therefore not much at all is known about the condition. Only recently that the likes of Dr Goadsby become interested enough about it to push for further studies and researches. As CH is still more common in males, less is known about women with CH and even much much less is known about CH and pregnancies. When I first came onto the Board I spend time reading all the posts, even the archived ones, to learn as much and as quickly about the condition. One thing I noticed then was a couple of threads where women commented that they didnt get CH during a pregnancy, thats why I posted that sentence. Since then many women have come forwards and mentioned that they DO get CH during pregnancy, so now I no longer hold that understanding. It came from ignorance due to lack of information but it served a good purpose that it got people to speak out to correct it so that now we know better. So thank you for clarifying that point Polly. I wish you all the very best and many PFDAN. Take care, Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by CLivingston on Oct 27th, 2006, 1:05pm Posting on behalf of my better half: * 6'7" - 280 lbs * tallest in his family * grew 1 foot in height in 2 years at age 16 * all four children in his family have migraines, he is the only one with cluster migraines. Neither parent had migraines, nor is there an extended family history of them. DH's father NEVER suffered a headache of any type during his life. * onset at 35 years of age, currently 53 |
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Title: Re: CH and HEIGHT - A SURVEY Post by Ozark_E on Oct 27th, 2006, 5:11pm I am 6'0" Male, Tallest in my family, by far. Father and brother are in the 5'9" range. Clusters came on around age 22. Cycles repeated every 24 to 28 months and lasted 5-8 weeks, until this cycle. I had repreive of 40 months or so, before this one came along. I'm 5 weeks into it now, so hoping I'm on the tail end. No family history of CH, father had some migraines, but were triggered by chocolate. He gave up the trigger, and the migraines are gone. :) By the way, I talked to someone who said everyone he knows with CH has dark eyes, i.e. brown or hazel. Mine are hazel. For what its worth. I'm sure all the blue-eyed CH sufferers will chime in. |
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Title: Re: CH and HEIGHT - A SURVEY Post by Sandy_C on Oct 27th, 2006, 5:40pm Hi Annette. I'll put my two cents in Female, 5/8", 160 lbs (but desperately trying to lose) Started first CH cycle 7-1/2 years ago at the ripe old age of 53. Episodic, with cycles lasting typically 8-9 weeks (although last one went 16 weeks - 8 weeks in cycle, 4 weeks PF, then another 4 weeks back in cycle on opposite side of head) I am an only child, but my dad was 6/1, and mom 5'7. Two daughters, one 5'3" the other 5'8", husband is 5'8". Thanks for asking questions, of all sorts! Whether it helps to find answers or not, it's still worthwhile in my book. Sandy |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 27th, 2006, 9:03pm Thanks everyone for posting the infos. Time for more update here. So now we have the information from 41 males members 1- 5'8'' 2- 6'0'' 3- 5'11'' 4- 5'10'' 5- 5'11'' 6- 6'2" 7- 6'2" 8- 5'8" 9- 5'10" 10- 6'3" 11- 6'3" 12- 5'11" 13- 6'2" 14- 5'6.5" 15- 6'4" 16- 6'4" 17- 5'5.5" 18- 5'9" 19- 5'7.5" 20- 6'5" 21- 6'4" 22- 6'3" 23- 5'11" 24- 5'10" 25- 5'1" 26- 6'8" 27- 6'2" 28- 6'2" 29- 6'2" 30- 6'2" 31- 6'5" 32- 5"7" 33- 6'3" 34- 5'11" 35- 5'10" 36- 5'9" 37- 6'1" 38- 6'4" 39- 6'0" 40- 6'7" 41- 6'0" - Percentage of male CH taller than average 82.9 %. - Percentage of male CH of average height 4.8% - Percentage of male CH shorter than average 12.3% - Percentage of male CH being 6ft or more ie significantly taller than the average is 53.6%. Thank you . Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 27th, 2006, 9:10pm And thank you to all the ladies as well, updating information 1- 5'2" 2- 5'7" 3- 5'2" 4- 5'6" 5- 5'9" 6- 5' 0" 7- 5'0" 8- 5'7" 9- 5'1" 10- 5'10" 11- 5'7" 12- 5'10" 13- 5'8" Percentage taller than average 53.8%. Percentage less tall than average 46.2% Pretty much even. Thank you ladies. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Oct 27th, 2006, 9:17pm One more point to make is the numbers are being forwarded to Prof Spira at Prince of Wales Hospital. The Neurology Department there is quite active in researches for headaches in general and CH in particular. He is quite interested in it thats why I keep going. We are now discussing the role of hormones ( including growth hormones and gonadal hormones ) in CH and I am doing as much research into it as possible. If anything, this is helping to keep the interest in the condition up with those who can do something about it for the benefit of all CHers. Thank you for reading and for participating. Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by Jobette on Oct 28th, 2006, 3:12am 5'6" - 153lbs - Pecan-Brown American Female, size 9 shoe. Episodic cycle |
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Title: [img][/img]Re: CH and HEIGHT - A SURVEY Post by Kirk on Oct 31st, 2006, 2:55am 6 ft. 192 lbs. Other than CH my problems are Avascular Necrosis and Degenerative Disc Disease. Had my right hip replaced last fall. Then had three open heart surgeries in eleven days. Four days after I left the ICU 100% Renal failure. Took a month to get over that. The Avascular Necrosis affects 100% of all weight bearing surfaces. The spine is 100% compromised. I've lost some of the feeling in my legs, hands and arms from it. The nerve pain can be hard to work around some days. All things considered. I get by OK. Last King Crab season was a bust. But I made it to the convention. [smiley=smokin.gif] |
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Title: Re: CH and HEIGHT - A SURVEY Post by Lizzie2 on Oct 31st, 2006, 3:57am 5'2", 108lbs. I'm currently 25 years old, and I was formally diagnosed with CH when I was 23, but I'd starting having clearcut symptoms when I was 22. My headache history is very complex as I have multiple headache types, so the true start of my CH is a little unclear. I began suffering from episodic migraine as a child - around 8 years old is the first that I can recall. I believe that I suffered from these 1-2x/month until age 20. However, nobody in my family has migraine, and my mom used to just say they were tension headaches. It wasn't until much later that I knew that I'd been suffering from migraine all my life. When I was 20, I got really sick with a bad respiratory infection that bordered on pneumonia. A month and a half later, I got a headache that has never left. It is called New Daily Persistent Headache and very much mimics migraine - at least for me. The criteria is currently being revised which will actually benefit people like me who are diagnosed with NDPH as the former criteria didn't fit me very well. I got my headache on January 17, 2001 and it started in a pinpoint spot on the right parietal side of my head. NDPH has a very autoimmune type presentation and onset, IMHO. I believe this will be the answer for those of us who have this headache type as it is the most treatment resistant of all headache types. I believe that's because they're barking up the wrong tree and that migraine drugs aren't the appropriate treatment. In March of 2003, I was at a figure skating class at school, and I fell and landed on the back of my head. I sprained my neck and got a mild concussion. After that, I began to have shorter-lasting headaches that resembled the symptoms of CH, but I couldn't discern what was happening for some time. It actually helped to find the old chat site that Elaine had run and then talk to people like BillyJ who helped me to separate my headache types apart from one another. My headache-specialist neuro missed my initial diagnosis of CH, but then diagnosed it properly about a month or two later. In March of 2005, I got my first basilar migraine attack - at least as far as we know this is what it was and we cannot be entirely sure that this was my first one, but that's what we suspect. I'm also currently being treated by methotrexate for an autoimmune disorder. When I told this to my neuro, he said that maybe it would help the CH because there have been anecdotal reports of CH'ers who have needed plamsmaphoresis for other conditions like myesthenia gravis and have had improvement of their CH. A month after taking methotrexate, both my NDPH and clusters had improved markedly - as well as my fatigue and autoimmune symptoms. Unfortunately, in August with the severely hot weather, everything got much worse again. Just today I was ordered to increase on my MTX and start injecting it instead of taking pills, so I'll be monitoring how it affects my headaches. I am a trainee member of the American Headache Society. At the 2005 Annual Scientific Meeting for the AHS, held in Philadelphia, someone did a poster presentation about testosterone levels and CH. I'm not sure if this presentation was ever written up and submitted for journal publication. I told the person presenting that poster that I have chronic CH, and he asked me if I'd ever had testosterone levels tested, but I have not. There is evidence on my brain MRI of a possible cyst or microadenoma on my pituitary, measuring 5mm, but my prolactin level was normal. I have no change in any headache types around my period. I do also have 9 nonspecific white matter lesions on my MRI as well. So that's just the skim summary of my headache stuff. Hope some of it helps. Oh I forgot to say that I'm the shortest person in my immediate family. My mom is 5'4. Dad is 5'7" Brother is 5'8" (or maybe those last two are reversed...I forget...) I have an aunt who is shorter than me, but it's only because of severe scoliosis. Otherwise, I'm the runt. I've got the legs of someone who is 5'5" but the torso of someone who is 5'0 Best of luck! Carrie/Lizzie2 :) |
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Title: Re: CH and HEIGHT - A SURVEY Post by dave..... on Nov 14th, 2006, 9:47am i am 6'1'' the tallest in my family..... i can remember getting crippiling head aches as a small child.... but they were once every few years....... but i remember them very well |
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Title: Re: CH and HEIGHT - A SURVEY Post by swimchica623 on Nov 14th, 2006, 11:09am I'm kinda tall...5'7" and maybe the tallest in my family. My mom is short/average..I think my dad is tall but compared to other men I think he is just sorta tall and my brother is kinda tall too. So I'm a little tall but not unusually for my family. I'm 21 and just got diagnosed with clusters last month, just started getting them in June...hey right after my 21 birthday, almost to the day. |
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Title: Re: CH and HEIGHT - A SURVEY Post by The Image on Nov 19th, 2006, 7:23am I'm 6ft 2" and tallest in my family. |
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Title: Re: CH and HEIGHT - A SURVEY Post by aura on Nov 19th, 2006, 5:31pm I am 5 '4 and not the tallest person in my family. |
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Title: Re: CH and HEIGHT - A SURVEY Post by yikes-another-one on Nov 22nd, 2006, 8:47pm :) 5'2" onset by 27, but diagnosis at 32... [smiley=huh.gif] Fmale.... think I might havehad them as a teen, Know I had a lingering cough in fall season, and lethargic... but definitely episodic, ch since 27... also pituitary abnormal cells were seen, but no insrance to investigate.... best wishes for correlations.... TJ |
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Title: Re: CH and HEIGHT - A SURVEY Post by johnd7 on Nov 23rd, 2006, 12:00pm Male 5-7 (far from the tallest but not the shortest in my family either) CH since at least 13-14 years old, diagnosed a few years later. As a side note, I am pretty sure I actually had CH as early as 7-8-9 as I played a lot of soccer and after every game I would come home in incredible pain, there is little doubt it was the same CH pain that was induced by excersice at the time. Same thing happens now after playing basketball in a cycle. I am 36 now |
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Title: Re: CH and HEIGHT - A SURVEY Post by justnuts on Nov 23rd, 2006, 1:00pm White male 6'0 200 lbs, ambidextrous (the wife says I can screw things up with either hand) and tallest in my family. I started chasing the beast at around age 40 and I'm episodic. Oops forgot to add I'm 53 now. |
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Title: Re: CH and HEIGHT - A SURVEY Post by Barak on Nov 23rd, 2006, 4:25pm by far not the talles tin my family at 5'7. right ahnded left sided cluster head. first headaches started early on at age 7 left with them for a year stopped getting them again and worse now at 16 but beleive me they were still horrible at that age. and im episodic. good luck Barak |
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Title: Re: CH and HEIGHT - A SURVEY Post by Gayle on Nov 23rd, 2006, 8:39pm 6'1/2" female and definitely the tallest in my family. Onset of clusters at age 42 and am 65 now. Episodic. The cycles are not near as often or as intense as they used to be, although my cycles could last as long as 6 - 8 months. Something of interest: from day one, I've always been a sleeper - bored or tired didn't matter I could always sleep......until the past couple of years. Even through my ch I could abhort with caffergot and sleep when the worst was over. Now with the sleep, I can go 2 or 3 hours for a while, sleep 2 or 3 days straight - just no consistency or pattern to it. Gayle. |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Nov 23rd, 2006, 9:05pm Thank you very much ladies for posting your information. This is the update 1- 5'2" 2- 5'7" 3- 5'2" 4- 5'6" 5- 5'9" 6- 5' 0" 7- 5'0" 8- 5'7" 9- 5'1" 10- 5'10" 11- 5'7" 12- 5'10" 13- 5'8" 14- 5'6" 15- 5'2" 16- 5'7" 17- 5'4" 18- 5'2" 19- 6'1/2" Percentage taller than average 57.9%. Percentage less tall than average 36.8% One person at average height 5.3% It is interesting that the number of ladies with CH being taller than the average height is now more than 50%. Please bear in mind that this number simply reflect those who have posted here, not by all mean reflecting the whole CH population out there. Thanks ladies Annette |
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Title: Re: CH and HEIGHT - A SURVEY Post by BB on Nov 23rd, 2006, 9:11pm Thank you to the gentlemen also, updated info as below 1- 5'8'' 2- 6'0'' 3- 5'11'' 4- 5'10'' 5- 5'11'' 6- 6'2" 7- 6'2" 8- 5'8" 9- 5'10" 10- 6'3" 11- 6'3" 12- 5'11" 13- 6'2" 14- 5'6.5" 15- 6'4" 16- 6'4" 17- 5'5.5" 18- 5'9" 19- 5'7.5" 20- 6'5" 21- 6'4" 22- 6'3" 23- 5'11" 24- 5'10" 25- 5'1" 26- 6'8" 27- 6'2" 28- 6'2" 29- 6'2" 30- 6'2" 31- 6'5" 32- 5"7" 33- 6'3" 34- 5'11" 35- 5'10" 36- 5'9" 37- 6'1" 38- 6'4" 39- 6'0" 40- 6'7" 41- 6'0" 42- 6' 43- 6'1" 44- 6'2" 45- 5'7" 46- 6' 47- 5'7" Percentage being taller than average 80.8% Percentage being of average heigh 4.2% percentage being shorter than average 15% The number is significant even for the small and maybe biased number of sample presented here. Very interesting. Thanks everyone. Annette |
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