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Topic: Deep Brain Stimulation Treatment for Clusters (Read 821 times) |
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watchandwaitr
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Deep Brain Stimulation Treatment for Clusters
« on: Sep 29th, 2006, 6:24pm » |
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Has anyone tried Deep Brain Stimulation for the Treatment of Cluster Headaches?
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LeLimey
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #1 on: Sep 29th, 2006, 6:47pm » |
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Hello!
You'd get more answers if you post this on the meds board - to the best of my knowledge only one person who posts here alleges to have had it done. He has been discredited as the hospital where he allegedly had it done didn't carry out any DBS procedures during that time frame so bearing that in mind, the answer is no.
What is your CH history? Lets see if we can't help you at all
Regards
Helen
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watchandwaitr
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #2 on: Sep 30th, 2006, 1:30pm » |
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Sorry, new to site and never did message boards before. Couldn't figure out how to get back in!
My husband has had Chronic Daily Cluster Headaches since 1987. He gets them daily, and by that I mean two - three-four during the night from a sound sleep, when they are bad I loose count.
Two years ago after back surgery, they stopped. No one can really figure out why but they were wonderful days. He forgot how bad they can be. Our life was somewhat normal.
Then in August they came back fast and furious. After 20 years of getting them on Sept 11, 2006 I called the ambulance who took him to a local emergency room. We had never been so desperate. That was a mistake. They stuck us in a bright room and left us for 5 hours. Until they got sick of him screaming, finally gave him a prescription of Verapamil. Since August we tried to make an appointment with Mayo Clinic here in Jacksonville, but were told the neurologist only takes new onset cases not patients with a history, especially a history as long as his. So we are waiting for a family doctor to be assigned to him a Mayo who after he does his exam, may refer him to a Mayo Nuerologist.
We sought out a new local neurologist, who after we asked her to take him off the Verapamil told us he should stay on it and put him on Bachlafen with the verapamil. This made him so sick (stomach and bowels, and the bachlafen made his cluster constant!
Yesterday we ended up back at the family doctor who gave him generic 5mg valium and oxycointin 5mg (capsule). The dose he gave couldn't calm me! They do not work unless he takes more than the prescribed doses. But at least he slept a little. First okay night since August and he still had two cluster headaches.
So, now he feels we have no alternative but to find a surgeon for DBS.
Sorry. The background could go on, and on. I should also tell you that he smokes cigarettes.
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TxBasslady
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #3 on: Oct 1st, 2006, 1:16am » |
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Can you give us an idea what medications he's taken for CH over the years?
This surgery is invasive...and risky. I would never even consider it...but that's just my personal choice and opinion.
Narcotic meds do nothing for CH. If anything, they make it worse.
I'm wondering if he's ever used oxygen....02 works for alot of us.
A little more info would be helpful.
I'm real sorry your hubby is suffering...you came to the right place. You'll find lots of support and help here. Usually someone here 24/7. Feel free to ask any questions you may have.
Stay in touch...and let us know how he's doing. When you have the time, let us know a bit of history about any treatments/meds he's used in the past.
Best wishes,
Jean
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| « Last Edit: Oct 1st, 2006, 1:42am by TxBasslady » |
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watchandwaitr
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #4 on: Oct 1st, 2006, 4:11pm » |
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Thanks for moving this to the correct spot on the Message Board.
History: My husband has CH since 1987. He has always been a daily cluster headache sufferer, until about 22 months ago when they stopped. Now they are back and he is so depressed and desperate.
I don't know the order of the medications he has tried or the dosages, but this is what I can remember:
He has tried O2 it helped a bit but it is very problematic and it has never stopped a CH the O2 merely eased the severity. Which was good, The problem is if you can't sit still, how can you sit and breathe through an O2 mask! He has almost knocked the tank over and blew us to bits! We got rid of the tank.
Over the years he has tried Elavil, Depakote, Prednisone (mega doses) Isoptin, Vicodin, Klonopin, Zanaflex, Imitrix, Imitrex injections, Wigraine, DHE 45 injections, Zoomig, Zoomig ZMT, Methyltrexate, Verapimil, Bachlafen, generic oxycotin, and valium, Topamax . Right now he is on the Topamax and the generic oxycotin and generic valium. He is tapering off that Bachlafen (which was horrible for him.)
More histroy:
We traveled to Houston in 1995 to see a Dr. Hurt for a Sterotactic Trigeminal Rhizotomy, but after hearing about the side effects and the fact that the CH can learn a new route or path and he could still have cluster headaches he didn't let them perform the surgery. Oh we also learned the surgery could also lead to blindness and drooling!
More History:
He tried a Spenopalatine Ganglion injection in 2003. He had a Cluster Headache on the way home.
Now: We are thinking about corrective surgery for his deviated septum maybe that will work! Even if it eases the severity. This week we have found a new therapy that has helped in the last couple of days you won't believe it! I ordered that Sinus Buster via the link on this website, the Sinus Buster did not work for him, i wish it did. But, it did lead him to stick Vicks Vapor Rub in his nostrils. (Which they warn against the label and this jar is probably 5-6 years old.) The Vicks has helped ease the pain of the ch! It does not abort them, but it eases them.
Hanging in!
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unsolved1
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #5 on: Oct 1st, 2006, 8:39pm » |
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I'm stumped that Imitrex, DHE, and Prednisone all failed. These are all medications that are generally very effective at stopping clusters. DHE rarely fails to abort clusters (at least for awhile). This almost points to the headaches being something other than clusters.
The Sphenopaletine block didn't help me either. I did it twice and it made me worse. ON blocks may help. RFG may help. Histamine desensitization may help. I would try all of these before ever considering an invasive procedure such as DBS. Don't go cutting into nerves or the brain until you try these first.
Goodluck
UNsolved
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BB
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #6 on: Oct 2nd, 2006, 4:49am » |
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Its very dangerous to mix things like oxycontin and valium, they will mess with his head, they are not recommended for CH.
There is a case here in Australia where panic attacks in a CH sufferer mimic the exact pain of a cluster headache. However as its a panic attack and not cluster, nothing works for it except for more narcotics or sedatives. Patient became very messed up in the end needing psych review and on going counselling.
I suggest you keep a very clear diary of exactly when, how long, and the characteristics of each attack as well as check every single time if he has the accompanying symptoms of Ch such as constricted pupil, droopy eyelid, blocked nose, blood shot and teary eye and sweaty brow with them or not. Even videotape him if you can and show it to the neuro.
And yes I am very surprise that DHE didnt work. Its the hallmark of cluster treatment. The hospital uses DHE infusion IV to treat difficult, intractable CH and they work all the time.
Also are you saying that your husband has had DAILY clusters since 1987? Thats 19 years of 3-4 cluster hits EVERY single day? Despite all the meds that you have mentioned? None of them worked AT ALL ?
Are you sure ? Even chronic people have a few days in between where they are painfree.
Your husband should double check again in case he has other types of headaches before going for the surgery.
Good luck with it all and painfree wishes to you and yours.
Annette
PS: Nasal septum operation WONT do a thing for CH, CH has nothing to do with the nasal septum. Also kindly remove the expired Vicks from your husband's hand. Putting Vicks up his nose will burn his delicate lining tissue and will cause nose bleeds.
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no-one
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #7 on: Oct 2nd, 2006, 8:54am » |
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"Are you sure ? Even chronic people have a few days in between where they are painfree."
Not all of us get pf days, I do have cycles in my cycles so there are betterdays, but I still get hit a few times a day everyday(normaly 6- 8 ). I am going on my 8th year of being chronic.
But I decied that I am not chronic I have just been having a VERY LONG cycle.
PF wishes
b
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| « Last Edit: Oct 2nd, 2006, 8:55am by no-one » |
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BB
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #8 on: Oct 2nd, 2006, 10:04am » |
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Hi all,
I have done some research and as I am a subscribed member of the Neurology Publication of Blackwell Publishing, I am able to find this information on one of the published paper on the subject.
This paper is written by the specialists named below, all leading headache specialists including Prof Goadsby whom we all know, its published in the Cephalagia Journal in 2004:
Leone, M, May, A, Franzini, A, Broggi, G, Dodick, D, Rapoport, A, Goadsby, PJ, Schoenen, J, Bonavita, V & Bussone, G
Deep brain stimulation for intractable chronic cluster headache: proposals for patient selection.
Cephalalgia 24 (11), 934-937.
doi: 10.1111/j.1468-2982.2004.00742.x
------------------------------------------------------------------------ --------
Table 1 Criteria for electrode implants in intractable chronic cluster headache
1. CCH diagnosed according to IHS criteria; in addition both of the following:
(a) CCH for at least 24 months
(b) attacks should normally occur on daily basis
2. Attacks must have always been strictly unilateral
3. Patients must be hospitalized to witness attacks and document their characteristics
4. All state of the art drugs for CH prophylaxis must have been tried in sufficient dosages (unless contraindicated or have unacceptable side-effects, etc.) alone and in combination, where applicable. These comprise verapamil, lithium carbonate, methysergide, valproate, topiramate, gabapentin, melatonin (where available), pizotifen, indomethacin and steroids.
5. Normal psychological profile
6. No medical/neurological conditions contraindicating DBS including:
( a) Recent myocardial infarction
(b) Cardiac arrhythmia
(c) Cardiac malformation
(d) Epilepsy
(e) Stroke
(f) Deep brain stimulation for other reason
(g) Degenerative disorder of central nervous system
(h) Arterial hypertension or hypotension, not controlled by drugs
(i) Autonomic nervous system disorder
(j) Endocrinological illnesses
(k) Major disturbance in electrolyte balance (e.g. due to renal insufficiency or hyperaldosteronism)
7. Normal neurological examination except for symptoms characteristic of CH (e.g. persistent Horner's syndrome)
8. Normal CT scan (base of the skull window). Normal cerebral MRI including cranio-cervical transition and MRI arterial and venous angiography
9. Neurosurgical team experienced at performing stereotactic implant of electrodes
10. Patient not pregnant
11. Ethics Committee/Institutional Review Board approval.
12. Patient gives up smoking and drinking alcohol
13. Patient informed and gives written consent.
So its not that easy to get this treatment.
The paper goes on to say that there have been only 4 patients who got good results with this treatment and as it is so new that there is still major concern over long term effects and possible complications.
Not something for the faint hearted!
Annette
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BB
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #9 on: Oct 2nd, 2006, 10:08am » |
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Also interestingly , they also said giving up smoking and drinking for good is a major criteria as many chronic clusters convert to episodic when they do. Thats why its a criteria before they would consider doing DBS.
Guess this wont go down well with some CHers including my DH ! 
Annette
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LeLimey
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #10 on: Oct 2nd, 2006, 2:10pm » |
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I notice that paper didn't say that of the six people who have had the operation one had serious complications and one died of unstoppable bleeding...
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unsolved1
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #11 on: Oct 2nd, 2006, 2:46pm » |
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I believe that DBS for CCH has been done over a dozen times now around the world (Only a handful of times in the USA).
This should be a very last resort.
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Pinkfloyd
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Re: Deep Brain Stimulation Treatment for Clusters
« Reply #12 on: Oct 2nd, 2006, 5:23pm » |
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