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Title: UK CH Conference... Post by cathy on Jun 30th, 2003, 12:49pm Wendy and I went to the UK CH conference at the weekend so I thought I would just highlight a couple of the things that were mentioned.....I have I also plan to send a copy to Catlind and Jonny so you can get a hard copy if you want too. The whole day was really interesting, and I hope I relay the information (as I understood it) correctly. Verapamil as a long term preventative was discussed 960mg/day Side effects which Dr Goadsby would like to look into further were mentioned, but I will put the question up in a separate post so that it can be answered by those on it, but it was suggested that episodic sufferers on verapamil should consider taking a break from it when not in cycle, as there is growing evidence to suggest that the body can build up a tolerance to this drug and in some cases change the CH from episodic in nature to chronic...?? Side effects noted were Swollen Legs Constipation Ginigival Hyperplasia (swollen bleeding gums) (if you suffer from GH and are on Verapamil please post on the topic I will be posting) Surgery as a treatment was discussed and the Mayo Clinic Experience 1981 - 1997 results were used... Sensory V root section....(this leaves the side of the face numb and you are unable to blink..often the attacks can come back or swap sides...) Complete Response - 1yr later 10/17 Incomplete Response - 1 yr later 2/17 Undertermined outcome - 1yr later 5/17 Complications Minor Corneal Irritation - 11/17 Corneal abrasion - 2/17 Meningitis - 1/17 Anesthesia dolorosa - 1/17 (no feeling but a burning pain which is untreatable...) Death - 1/17 Surgery is not used much as a treatment in the UK Octreotide...I believe this is a drug undergoing trials which does not constrict the blood vessels, which is not believed to be necessary to treat CH. It is to be discussed in detail by the International Headache Society Rome in September 2003. Neuromodulation....Electrode implants into the posterior hypothalamus...the Italians have tried this on 7 italians who were chronic sufferers with up to now good results....1 has had it done on both side of the hypothalamus as the ch came back on the other side. Suboccipital Nerve Stimulation is extremely interesting and is showing good results this is done by injection. Zolmitriptan and Capsaicin intranasal are being developed too. Smoking does NOT seem to have an effect on clusterheadaches.....although a large percentage of clusterheads are also smokers...?? Anti-depressants in their opinion do not work for CH. Other names for Cluster Headaches... Migranious neuralgia Histaminic cephalalgia Horton's Headaches (Cephalalgia) Petrosal neuralgia Sphenopalatine neuralgia Hemicrani periodic neuralgiformis Erthroprosopalgia of Bing 'a particular variety of headache' CH V Migraine Clusterheadaches... Male dominated Unilateral 100% Duration 15 - 180 mins Nausea - 50% Photophobia - 56% Exacerbation with Movement - NO Family History - YES Aura - YES Migraine.... Female dominated Unilateral 66% Duration - 4hrs - 72hrs Nausea - 80% Photophobia - 85% Exacerbation with movement - YES Family History - YES Aura - YES All this and a lot more are on the film. Cathy :) |
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Title: Re: UK CH Conference... Post by Marc on Jun 30th, 2003, 1:42pm Cathy, Thanks for the update. Two things really stood out (to me) in the CH v Migraine comparison: Nausea = 50% Aura = Yes Hmmmmm... |
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Title: Re: UK CH Conference... Post by don on Jun 30th, 2003, 1:52pm Aura does not have to be a visual. It can be a body sensation. When I feel an attack coming my whole body feels ill so in that sense I experiance aura. |
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Title: Re: UK CH Conference... Post by ZAIRA on Jun 30th, 2003, 2:43pm Thanks for info Cathy&Wendy... ;) Love you, Zaira :-* |
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Title: Re: UK CH Conference... Post by Live4Fun on Jun 30th, 2003, 3:03pm Also, Yes to Family History? That's new. I thought this mostly considered a non-family oriented type ailment. Ahh the discoveries they make everyday :) I for one get Nausea during 9 and 10 attacks, I am glad they finally recognize that as a characteristic of Clusters too. Thanks for the info! :D PFDANs Bryan |
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Title: Re: UK CH Conference... Post by Wendy the Brit on Jun 30th, 2003, 4:23pm Good stuff Cathy Bryan: The genetics Prof there was certain that there is a family predisposition to CH caused by a faulty gene. They have already studied families where clusters exist in several generations and of the 5 identical twins found with CH, both twins have it in all 5 cases which strongly suggests a common gene again. There is a major study being embarked upon in the UK to try and identify the gene in question. Most of the sufferers at the conference gave blood to assist this study. The reason for this is that if they can identify it, it may be one of the 150 genes where they already know it's function. This would be good news because they would then know what the gene carrying the CH problem SHOULD be doing instead of what it is doing to us. If it isn't one of the 150, the others are currently being identified by the Human Gene Project, though there are so many, identifying them all is years away. Also one thing Cathy. Nasal Zolmitriptan is already developed, tested and licensed I think, just don't know how freely available it is yet. W the B |
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Title: Re: UK CH Conference... Post by Donna on Jun 30th, 2003, 4:59pm This is VERY interesting and am waiting to hear more. Having had cluster headaches for 28 years, and my son starting into cycle when he was 17, I surely believe in the genetics theory. Blood- here for donation. |
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Title: Re: UK CH Conference... Post by Wendy the Brit on Jun 30th, 2003, 5:07pm They are very interested in blood from ALL members of families where there is more than one Cluster sufferer, including blood from those who do not have Clusters but I have no idea how you would do it from the USA. The person concerned is Professor Richard Trembath from the University of Leicester. W the B |
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Title: Re: UK CH Conference... Post by Live4Fun on Jun 30th, 2003, 8:01pm Thank you Wendy! That's great information. Donna - I'm sorry, I wasn't trying to say I didn't believe in the genetics thing, it is just new information for me. All the Neuro's and Docs I've seen state side say there is no family tracibilty. I am very excited by this news. Every step like this brings us one step closer to the cure :) :) :) Can't wait to hear what our speakers have to say at the NY convention!! Bryan |
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Title: Re: UK CH Conference... Post by oringkid on Jul 1st, 2003, 2:49am Whoa! too cool! I don't think nausea is a characteristic of CH, but, can be an effect of the intensity of the pain which causes extreme upset of the body in general and in some can cause upset of the digestive system. But the AURA thing! Exactly what kind of aura are they talking about. I truly don't believe that they would be talking about an all over body type aura. Aura in headache is a specific visual phenomenon. I have ocular migraines....in other words, I get an aura but (thank goodness!!) little to no head pain. But I have never gotten it in conjunction with my CH. Please elucidate! (I love that word LOL anybody remember that song they did for the legend of sleepy hollow "sit right down while I elucidate..") Sherry BTW, Wendy, how's your little one? Hope he's up and around and feelin' frisky! |
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Title: Re: UK CH Conference... Post by Wendy the Brit on Jul 1st, 2003, 3:39am Sherry Thanks for asking, he's fine and causing loads of trouble now like a normal 3 year old. If anyone is really interested in the genetics theories, Prof Trembath's presentation included a lesson for laymen in how genetic predisposition works as well as what he believes about Cluster being passed down in the genes. I couldn't repeat it, but I did understand it at the time. The slides he had were very interesting too, both to explain the science behind it as well as showing the gene passing down in the cluster families they have studied so far. If you want to see it all, Cathy videod it.(see above and other posts) I was unconvinced at first as I have no family history of ANY type of headache and I get CH and migraine, but if there is a 'faulty' (this is not the right word by the way) gene in one side of the family it doesn't always pass down, and even if it does, we don't know what other factors are needed in conjunction with the gene to cause CH to manifest. That's why they need blood from the members of the family who do AND don't get CH, to identify which particular gene it is causing it, and what other factors may be involved (age being one of the crucial ones as most CH doesn't develop until later adulthood) Interesting stuff. My shaky (don't quote me, I was hungover at the time) memory of why this is so important is that all of the genes are involved with different proteins in the body, and these different proteins carry out different functions. The gene tells the body what to do and how to develop, and in our case the gene is telling our body to do something very, very unhelpful. If the gene is isolated via this gene study at Leicester University, then its function and the particular protein identified, that is a huge step towards a cure one day. One delegate asked if this meant genetic engineering CH out of people, and Prof Trembath said No, it means exactly what I said above, using the knowledge of the gene's PROPER function to work out what is different with us. The analogy would be that every person has a gene which tells the body how much insulin to make and when, this gene in some types of diabetics is not doing this as it should, so when the gene is passed down, diabetes results in the next generation. The minimum this does is tells us wheher the person has a chance of developing diabetes, and action can be taken, the Holy Grail is that it allows the medical profession to know exactly why the body is doing this to work towards a way of stopping it. I'll shut up now, but it is fascinating W the B W the B |
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Title: Re: UK CH Conference... Post by oringkid on Jul 1st, 2003, 4:01am Wendy, I think it would be interesting to find out if this gene could have other effects.... my brother, and my great grandfather have/had physical defects, and my daughter is mildly physically handicapped and mentally retarded....we have other mentally retarded people in our family as well... all on my mothers side I believe and she had migraines, but no CH. Quite interesting. Sherry |
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Title: Re: UK CH Conference... Post by Wendy the Brit on Jul 1st, 2003, 4:08am Sorry Sherry, life sounds like it keeps you busy, God isn't kind sometimes. This is the kind of thing identifying the gene will do (one day, sooner rather than later we hope) Once they know what purpose this gene is SUPPOSED to have, they might then work out what the hell it is actually playing at, f..ing thing. W the B |
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Title: Re: UK CH Conference... Post by jmorgan52 on Jul 1st, 2003, 4:18am I also get very nauseus a few times during each cycle when I get hit with a 9 or 10. Projectile vomit is a better description :-/ I was informed by some of the more hard hearted here when I joined the board that I suffered from migraine because of this!!!! As for the "aura", I somehow know quite a while beforehand when I am going to get hit. Hard to explain exactly, but I just feel a bit different. A sort of remote, "out of body" feeling. I don't see flashing lights or anything like that. My mother had frequent so-called migraines when I was growing up. She says they were seasonal and stopped completely when she hit menopause. The may well have been CH as I reacall her having a red, tearing eye and her holding her temple a lot, and often vomitting during an attack. She said nothing could stop the pain (40 years ago) My son is 27 and he is prone to "bouts of mild headaches" with long periods of remission, but he says they are nothing like mine. Hope they don't turn into CH. John |
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Title: Re: UK CH Conference... Post by Wendy the Brit on Jul 1st, 2003, 4:37am John Looks sadly like a 'cluster family' to me. Your Mum's sounds like undiagnosed CH, and you probably know this already but your son has not reached the optimum age for CH onset yet. Our UK survey will confirm this (this is the other survey which is more about symptoms, treatments etc) but quite a lot of true CH sufferers (NOT MIGRAINE) get warnings that a cluster approaches - this includes many different signs e.g. auras, tiredness, digestive troubles etc. W the B |
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Title: Re: UK CH Conference... Post by zanychef on Aug 13th, 2003, 6:17am damn i missed the conference(didn't even hear about it) when you work out how to upload the tape i would be v.interested been chronic for more than 8 yrs now and any new info would be apprieciated ;D |
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Title: Re: UK CH Conference... Post by Hooter on Aug 13th, 2003, 6:49am Are you registered on OUCH UK. The conference was organised by them and publicised fully on their website. there is also a conference report there. Suggest if you want to see Cathy's video you pm her (thinks she is away for the next couple of weeks though) W the B |
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Title: Re: UK CH Conference... Post by ozzman on Aug 13th, 2003, 9:03am In case anyone is interested to know more about Octreotide, read below: Quote:
part 1 of 2.... |
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Title: Re: UK CH Conference... Post by ozzman on Aug 13th, 2003, 9:05am part 2 of 2... Quote:
Also I had seen some other sources where this drug interacts with Calcium Channel Blockers (Verapamil for example) where it has additive effects. Just some info. Ozzy |
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