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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › End of the line? Some possibilities

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End of the line? Some possibilities (Read 1514 times)

Bob Johnson

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End of the line? Some possibilities
Jul 24^th, 2013 at 9:08am

Headache. 2013 Jul;53(7):1183-90. 2013 Jun 28.
Cluster headache: potential options for medically refractory patients (when all else fails).
Tepper SJ, Stillman MJ.
SourceHeadache Center, Neurological Center for Pain, Cleveland Clinic, Cleveland, OH, USA.

Abstract
The most evidence exists for mixed anesthetic/steroid occipital nerve blocks (which are also useful in non-refractory patients), deep brain stimulation, sphenopalatine ganglion (SPG) blocks, SPG radiofrequency ablation, and SPG stimulation with the Autonomic Technologies, Inc (ATI) SPG Neurostimulator, the latter approved in the European Union and reimbursed in several countries.

© 2013 American Headache Society.
PMID:23808603[PubMed]

« Last Edit: Jul 24^th, 2013 at 9:10am by Bob Johnson »

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wimsey1

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Re: End of the line? Some possibilities
Reply #1 - Jul 25^th, 2013 at 9:04am

Quote:

anesthetic/steroid occipital nerve blocks

That's what I was given last summer. Worked for about 9 months which is better than anything else has worked. Still holding off on another one (superstition?) until things get a little more unmanageable. It's nice to know there are some irons still in the fire, though I'm not sure I want a pacemaker attached to my head (figuratively speaking). Thanks Bob, and God bless. lance

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Imitrex4Breakfast

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Re: End of the line? Some possibilities
Reply #2 - Jul 26^th, 2013 at 12:38am

That's odd to read because I was at the Cleveland Clinic twice this year AND I saw Dr. Tepper (There are 2 Dr. Tepper's there btw, husband & wife?). What confuses me is that Dr. Tepper brought a neurosurgeon into the room with him to meet me and they DO NOT recommend that anyone have the DBS for cluster headaches. They are VERY pessimistic about DBS citing that it 'most likely will cause paralysis without helping the cluster attacks'. They also said that many patients opting to have the DBS will suffer a stroke during the procedure. They had many, many reasons as to why the DBS is not a viable plan for clusters ... basically driving me away. I guess their meaning for "When all else fails" is RIGHT BEFORE SUICIDE try DBS, other than that, DO NOT DO IT because of paralysis, stroke, infection, and still not stopping the attacks. I drove 6 hrs each way to be told that they have no other options for me to try. Why couldn't they just tell me that over the phone and save me ALOT of time driving, gas money, 1 nights stay in a hotel, etc. etc. etc.

Them publishing that info is against everything they personally told me.
(At least I got to go to the "Rock-N-Roll Hall Of Fame Museum" which was a pretty neat thing to see if you like music.

I4B

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wimsey1

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Re: End of the line? Some possibilities
Reply #3 - Jul 26^th, 2013 at 8:03am

That sucks. Plain and simple. I had an appointment like that in Boston with a team that did laser knife surgery on the Trigeminal nerve. The team head told me I didn't have CHs because I hadn't yet tried taking Depakote or Dilantin. Idiots. I have since tried both without any success. Just as glad I didn't have procedure though given the possible outcomes. For me it was as simple as upping the verapamil, adding lithium, and trusting me with both imitrex and migranal for aborts. Still have 'em but with O2, lots of O2, can manage. blessings. lance

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: End of the line? Some possibilities Reply #4 - Jul 26^th, 2013 at 8:19am A very big SIGH!, guys. I'm going to let this abstract stand because it's an example of how necessary for us to be very cautious about what we accept to treat our bods. It's one of the reasons I keep beating the drum about not getting into self-diagnosis and self-treatment.
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