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john Hopkins appointment (Read 2408 times)
Bonnie lee
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john Hopkins appointment
Feb 9th, 2012 at 5:45pm
 
Well i went to my appointment at john hopkins yesterday. Final diagnosis Cluster headaches and occipital neuralgia. They are starting me on topamax and if that doesnt work they are talking about nerve blockers. Has anybody had that done? does it work at all?
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MeL
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Re: john Hopkins appointment
Reply #1 - Feb 9th, 2012 at 6:30pm
 
Hi Bonnie Lee!

I personally took Topamax for a short while and it was a no go.  I couldn't remember basic information like how to start an IV and since I'm a nurse, that was a big problem!  I was started on Zonegran and it has worked decently for my Migraines, not the CH's. 

As for the Nerve Blocks, I have not had these done.  I do work in surgery and work with Surgeons who perform pain/nerve blocks and knew one patient who had them done for cluster headaches.  The surgeons say they can be very painful and they are no guarantees that it's going to work.  The patient that I saw every time he came in for the blocks was very happy with the results.  He did say they were mighty painful, BUT it didn't compare to a bad CH. 

I'm sorry I'm not familiar with your history, have you tried the Verapamil/O2 yet?
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Bonnie lee
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Re: john Hopkins appointment
Reply #2 - Feb 9th, 2012 at 6:54pm
 
I am a nurse too!!!! Yes i am on veramipil and oxygen also sumaptriptan nasal spray and injections. well I am gonna start the topamax tonight and see what happens.
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MeL
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Re: john Hopkins appointment
Reply #3 - Feb 9th, 2012 at 7:37pm
 
Well, then you'll know exactly the point when the Topamx turns to "Dopamax" ... if it does.  I hope it works for you!

Keep looking on here about the blocks.  I remember reading someone had them done.  I can't say I remember the results.  I just remember reading about it when I first joined.   

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Bob Johnson
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Re: john Hopkins appointment
Reply #4 - Feb 10th, 2012 at 11:05am
 
Who is going to challenge Johns Hopkins??? <bg>

Little experince here with nerve blocks. This is the onlyl report on I have:

Curr Pain Headache Rep. 2010 Jul 27.

Blocking the Greater Occipital Nerve: Utility in Headache Management.

Young WB.

Department of Neurology, Jefferson Headache Center, Thomas Jefferson University,
111 South Eleventh Street, Gibbon Building, Suite #8130, Philadelphia, PA, 19107,
USA, William.B.Young@jefferson.edu.

Occipital nerve block has been part of headache medicine for more than HALF A
CENTURY, with injection techniques and solutions varying greatly. Most studies
have been case series and many show benefit for patients with migraine, cluster
headache, and postconcussive headache. A double-blind, controlled trial of
cluster headache has demonstrated that injectable steroids with local anesthetics
benefit cluster headache patients. A double-blind, controlled trial of nerve
blocks in occipital neuralgia, which may have actually been chronic migraine, was
positive.

PMID: 20661785 [PubMed]
=====
Top has been used by a number of our folks but the overall response is so-so with the side effects being a significant deterrent to continued use.

Tried Verapamil? This is the first line preventive. Following is widel used protocol.
--
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
======
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Bonnie lee
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Re: john Hopkins appointment
Reply #5 - Feb 10th, 2012 at 1:45pm
 
Yeah Bob, that's the one. The occipital nerve block. I hope it doesn't come to that but at this point I am up for anything. Getting discouraged. Was hoping that Hopkins would give me a different diagnosis but confirmed the cluster headaches and added the occipital neuralgia.
But that explains the pain in the side of my head sometimes and the ear pain I also get. I hate knowing that I have to live with this for the rest of my life. It's been 2 years to finally get a real diagnosis.
The doc did tell me that I am moving to the best place in the united states for a person with my condition. Seems that the mayo clinic in Scottsdale Arizona has the best headache clinic in the Us. at least according to him. He wants me to make an appointment now for the end of July for when I get there.
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Re: john Hopkins appointment
Reply #6 - Feb 10th, 2012 at 1:56pm
 
Quote:
...at this point I am up for anything.


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