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Topic: Surgery. (Read 330 times) |
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Davjac
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CH SUCKS!!!!!
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I have been a chronic clusterhead for the last 3 years and so have have not had much success with a range of medications.
At my last meeting with my consultant (this week) he mentioned the option of surgical procedures as a last resort!
Anyone had experience of such procedures, what are they, and do they work????
Thanks.
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don
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Are you telling me he suggested surgical proceedures but didn't bother to explain what they were?
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Bob_Johnson
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Re: Surgery.
« Reply #2 on: Aug 27th, 2004, 8:03am » |
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Find out the specific procedure he has in mind and post it.
My impression, from scanning the medical literature, is that results are quite mixed. I should be very cautious without some through exploration.
Might be useful if you would list all meds you have used--including dosing--and the combinations usedd. Let's see if the group can offer some different approaches before you take the surgery step.
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| « Last Edit: Aug 29th, 2004, 8:56am by Bob_Johnson » |
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Bob Johnson
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IndianaJohn
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Into the jaws of the Beast we ride!
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Re: Surgery.
« Reply #3 on: Aug 27th, 2004, 9:06am » |
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I have read several posts/threads from people that have gone the surgery/implant options. I have yet to hear of any success stories from anyone. some that I have heard of provided only a short temporary respite, others none at all.......
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Did my brains fall out or is this headache over?
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Davjac
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CH SUCKS!!!!!
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Re: Surgery.
« Reply #4 on: Aug 27th, 2004, 11:59am » |
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Consultant isn't that good. Very dismissive, doesn't explain himself, uses jargon, keeps cancelling appointments etc. Did not want to go into any detail about surgery other than there where procedures that could be considered if the tablets don't work.
Have had 3 courses of steroids (first 2 worked, been on the 3rd for 3 days now with no effect. Have tried ergotamine, sodium valporate and imigram nasal spray, none of which worked. Been on Imigram injecions for a year which are brilliant at stopping an attack. Currently on verapamil 480mg a day which had some effect until recently. now talking about putting me on Lithium.
Desperate to change consultant but to get a second opinion in the UK I would go to the back of a new consultants list ( which would mean it would be months before I was seen!).
Thanks
Dave.
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| « Last Edit: Aug 27th, 2004, 12:00pm by Davjac » |
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Bob_Johnson
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Re: Surgery.
« Reply #5 on: Aug 29th, 2004, 9:08am » |
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Suggest you look under "medication" button, left: This will give you some real world experience about which meds work. Might try printing out this page and take it to the doc. Might influence him.
Re. Steriods: It would be worth trying more rounds to see if you can find a dosing which works for you. In the medical literature, I've seen recommended starting doses ranging from 10mg to 100mg, then tapering. It's clear that there is no single dose which works for everyone.
It may be expensive for you but I'd strongly suggest buying the second book (below). It's a priceless source of good guidance--especially important when you have a doc such as you describe.
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HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Print out this and ask him for a trial. Some of us have had excellent results with it.
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Explore: WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.
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Click on the OUCH button (left) and get to the GB chapter. They can help you with the system.
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Bob Johnson
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BobG
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Re: Surgery.
« Reply #6 on: Aug 29th, 2004, 2:39pm » |
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on Aug 27th, 2004, 5:23am, Davjac wrote:
At my last meeting with my consultant (this week) he mentioned the option of surgical procedures as a last resort!
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The important words in that sentence are "last resort". Make it the "extreme resort" or "I don't care if my vision is blurred in one eye, my mouth droops on one side, my face is numb, I have no feeling in my teeth and the clusters have returned. At least I was cluster free for a week"
Quote:Consultant isn't that good. Desperate to change consultant but to get a second opinion in the UK I would go to the back of a new consultants list ( which would mean it would be months before I was seen!).
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Can't you get on the list now and when your name comes to the top dump the present consultant? Why wait months from now to get on the list and have to wait months more without a consultant?
I don't speak your language and don't know what you mean with the word 'consultant'. I take it for granted it is a doctor, right? In this country a consultant is someone that if you ask them the time they will tell you how to make a clock.
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Stay stressed. Never relax. Never sleep. Ever.
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pubgirl
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Davjac
Please, please talk to us at OUCH UK www.ouchuk.org. Ring the Helpline on 0161 272 1702 or post on the Support Board.
The only surgery being performed in the UK with any decent record of success for Ch'ers is being done when you have been referred to the team at the London Institute of Neurology. All other surgeries in the Uk are either nerve blocks or dental or sinus, none of which have any real record of success for Ch sufferers.
Have they given you any idea what surgery they mean?
Wendy
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UN_SOLVED
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I need a fully-automatic Imitrex injector !!
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Re: Surgery.
« Reply #8 on: Aug 31st, 2004, 1:34pm » |
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Did someone say surgery ? I've done a few things. What would you like to hear about ??
Surgery shouldn't be tried unless the traditional medicine route does no good. Nerve blocks should be done first. (Occipital block, Sphenopalatine block, Facet block). RF (Radio Frequency) is also a non-invasive option. Neurostimulation may be effective (for some) and minimally invasive. I had a bi-lateral Occipitlal nerve stimulator trial implant. It did me no good.
Unsolved > Procedures I've done
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I'm STILL alive ?
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