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Topic: UK CH Conference... (Read 902 times) |
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cathy
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UK CH Conference...
« on: Jun 30th, 2003, 12:49pm » |
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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 videod..videoed..vidoed..  filmed it on 8mm so when I have worked out how to put this to disk will download it and send a copy to anyone who wants it....
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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Marc
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Re: UK CH Conference...
« Reply #1 on: Jun 30th, 2003, 1:42pm » |
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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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don
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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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ZAIRA
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Re: UK CH Conference...
« Reply #3 on: Jun 30th, 2003, 2:43pm » |
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Thanks for info Cathy&Wendy... 
Love you, Zaira 
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Live4Fun
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One day at a time, we WILL make it through.
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Re: UK CH Conference...
« Reply #4 on: Jun 30th, 2003, 3:03pm » |
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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! 
PFDANs
Bryan
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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Wendy the Brit
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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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Donna
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Re: UK CH Conference...
« Reply #6 on: Jun 30th, 2003, 4:59pm » |
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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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Wendy the Brit
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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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Live4Fun
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One day at a time, we WILL make it through.
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Re: UK CH Conference...
« Reply #8 on: Jun 30th, 2003, 8:01pm » |
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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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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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oringkid
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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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Wendy the Brit
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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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oringkid
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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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Wendy the Brit
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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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JohnM
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Re: UK CH Conference...
« Reply #13 on: Jul 1st, 2003, 4:18am » |
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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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Wendy the Brit
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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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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: UK CH Conference...
« Reply #15 on: Aug 13th, 2003, 6:17am » |
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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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plenty of time to sleep now me headaches aint too bad
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Hooter
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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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ozzman
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We who are not as others -- Chaos A.D. --Sepultura
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Re: UK CH Conference...
« Reply #17 on: Aug 13th, 2003, 9:03am » |
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In case anyone is interested to know more about Octreotide, read below:
Quote:Octreotide acetate
Octreotide acetate (Sandostatin)
Octreotide acetate
(ock-TREE-oh-tyd)
Pregnancy Category: B Sandostatin Sandostatin LAR Depot (Rx)
Classification: Antineoplastic
Action/Kinetics: Similar to the natural hormone somatostatin. It suppresses secretions of serotonin and GI peptides including gastrin, insulin, glucagon, secretin, motilin, vasoactive intestinal peptide, and pancreatic polypeptide. Stimulates fluid and electrolyte absorption from the GI tract and inhibits growth hormone. May alter the absorption of dietary fats in some clients. Rapidly absorbed from injection sites. Peak levels: 5.5 ng/mL after approximately 25 min. t1/2: 1.7 hr. Duration: Up to 12 hr. About one-third of a dose is excreted unchanged in the urine.
Uses: Metastatic carcinoid tumors and vasoactive intestinal tumors (VIPomas) to inhibit severe diarrhea in both situations and cause improvement in hypokalemia in VIPomas. Acromegaly. The Depot form is used for reduction of growth hormone and IGF-1 acromegaly, the suppression of severe diarrhea and flushing seen with malignant carcinoid syndrome, and treatment of profuse watery diarrhea seen with VIPoma. Investigational: GI fistula, variceal bleeding, pancreatic fistula, irritable bowel syndrome, and dumping syndrome. Also, treatment of diarrhea due to AIDS, short bowel syndrome, diabetes, pancreatic cholera syndrome, chemotherapy or radiation therapy in cancer patients, and idiopathic secretory diarrhea. Other potential uses include enteric fistula, pancreatitis, pancreatic surgery, glucagonoma, insulinoma, Zollinger-Ellison syndrome, intestinal obstruction, local radiotherapy, chronic pain management, antineoplastic therapy, to decrease insulin requirements in diabetes mellitus, in thyrotropin- and TSH-secreting tumors.
Special Concerns: Use with caution in diabetics, in clients with gallbladder disease, in clients with severe renal failure requiring dialysis, and during lactation.
Side Effects: GI: Nausea, diarrhea or loose stools, abdominal pain or distention, malabsorption of fat, vomiting; less commonly, constipation, pancreatitis, anorexia, flatulence, abdominal distention, abnormal stools, hepatitis, jaundice, appendicitis, GI bleeding, hemorrhoids. CNS: Headache, dizziness, lightheadedness, fatigue; less commonly, anxiety, seizures, depression, vertigo, decrease in libido, syncope, tremor, Bell's palsy, paranoia, pituitary apoplexy. CV: Sinus bradycardia in acromegalics, hypertension, thrombophlebitis, SOB, CHF, ischemia, palpitations, orthostatic hypotension, conduction abnormalities, hypertensive reaction, tachycardia, arrhythmias, chest pain. Endocrine: Hyperglycemia or hypoglycemia in acromegalics, biochemical hypothyroidism in acromegalics. Galactorrhea, hypoadrenalism, diabetes insipidus, gynecomastia, amenorrhea, polymenorrhea, vaginitis. Musculoskeletal: Backache, joint pain, arthritis, joint effusion, muscle pain, Raynaud's phenomenon. Dermatologic: Pain, wheal, or erythema at injection site; flushing, edema, pruritus, hair loss, rash, cellulitis, petechiae, urticaria. GU: Pollakiuria, UTI, nephrolithiasis, hematuria. Hematologic: Hematoma at injection site, bruise, iron deficiency anemia, epistaxis. Other: Gallbladder abnormalities, especially stones or biliary sludge; flu symptoms, malabsorption of fat, blurred vision, otitis, allergic reaction, visual disturbances, anaphylactoid reactions, including anaphylactic shock.
Laboratory Test Alterations: Liver enzymes, CK.
Overdose Management: Symptoms: Hyperglycemia and hypoglycemia manifested by dizziness, drowsiness, loss of sensory or motor function, incoordination, disturbed consciousness, and visual blurring. Treatment: Withdraw drug temporarily and treat symptomatically.
Drug Interactions: Octreotide may interfere with drugs such as diazoxide, insulin, beta-adrenergic blocking agents, or sulfonylureas. Close monitoring is necessary.
How Supplied: Injection: 50 mcg/mL, 100 mcg/mL, 200 mcg/mL, 500 mcg/mL, 1000 mcg/mL
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part 1 of 2....
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ozzman
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We who are not as others -- Chaos A.D. --Sepultura
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Re: UK CH Conference...
« Reply #18 on: Aug 13th, 2003, 9:05am » |
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part 2 of 2...
Quote:
Dosage
•SC (Recommended), IV Bolus (Emergencies) Metastatic carcinoid tumors.
Initial, SC: 50 mcg 1-2 times/day. Then, 100-600 mcg/day in two to four divided doses for the first 2 weeks; maintenance, usual: 450 mcg/day (range: 50-1,500 mcg/day).
VIPomas.
Initial, SC: 200-300 mcg/day in two to four divided doses during the initial 2 weeks of therapy (range: 150-750 mcg/day). Doses may then be adjusted but the daily dose usually does not exceed 450 mcg.
Acromegaly.
Initial: 50 mcg t.i.d.; then 100-500 mcg t.i.d. The goal is to achieve growth hormone levels less than 5 ng/mL or IGF-1 levels less than 1.9 U/mL in males and less than 2.2 U/mL in females.
GI fistula.
50-200 mcg q 8 hr.
Variceal bleeding.
25-50 mcg/hr via continuous IV infusion for 18 hr to 5 days.
AIDS-related diarrhea.
100-500 mcg SC t.i.d.
Idiopathic secretory diarrhea, short-bowel syndrome.
Either 25 mcg/hr by IV infusion or 50 mcg SC b.i.d.
Diabetes, pancreatic cholera syndrome, diarrhea due to chemotherapy or radiation therapy in cancer clients.
50-100 mcg SC t.i.d. for 3 days.
Pancreatic fistula.
50-200 mcg q 8 hr.
Irritable bowel syndrome.
100 mcg as a single dose to 125 mcg SC b.i.d.
Dumping syndrome.
50-150 mcg/day.
•Depot Injection Acromegaly, Diarrhea associated with metastatic carcinoid tumors and VIPomas.
20 mg q 4 weeks by intragluteal injection
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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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