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Message started by ekahan on Oct 11th, 2012 at 5:14pm

Title: My first post
Post by ekahan on Oct 11th, 2012 at 5:14pm
Hi, I've been reading a lot of posts over the past several months. I guess it is now time for me to post.

I have been diagnosed with Chronic CH. back on April 9, this year. It has been 185 days and nights of pure pain and fear. I have tried every option presented to date by my Neurologist, headache specialist. And nothing has helped. I get nightly blasts that last typically 1 to 2 hours. I then get spikes throughout the day. These last anywhere from 15 seconds to 5 minutes. They are every bit as strong as the nightly episodes. I typically leave the bedroom before they start so my wife can get some rest. Oh! I am 59 years old when this all began. I trust my Dr.'s and will continue to fight this with every ounce of strength I have but I admit that my strength is diminishing quickly. When I am not in a fetal position, I am usually sleeping or resting, just waiting for another one to start. My Dr. says this will end! I am not so sure!

The medications I am on are causing me multiple problems as well. So we are trying to find a balance that will work.

Well I just thought I wanted to share my experience at this time.

This sounds pretty gruesome!!

I am not Suicidal. I could never do that to my wife and kids.

10/12/12:
REPLY: I am currently taking Verapamil 360 mg. Topomax 100 mg. Oxygen 7ml for 15 mins as needed. mostly for 2AM episode. Imitrex injection as needed. Wellbutrin for mode swings.

So far, all this is doing is taking the edge off of the pain. At night the pain is 7-9 on a 1 - 10 scale, 1 being pain free and 10 being incapacitated. During the day, I get spikes that are usually 6-8 but do not last too long. Needless to say, I am pretty much confined to my house, the Dr.'s office or I go out for walks. I have not worked since Mid April.

The Oxygen actually has caused the pain to increase more often than not. the Dr. says to keep it so I am.

I got an Occipital Nerve block done on June 25th. All that did was cause incredible HOT FLASHES and intense pain. I was laid up for 4 straight days. I got three shot of Demerol with no true relief.

I am not a complainer, I accept my situation and do what the Dr.'s try. If they are unable to get a handle on this I will begin to look else where. My Brother is a Dr. in Boston and has offered to help.

Title: Re: My first post
Post by ttnolan on Oct 11th, 2012 at 7:31pm
Welcome to the board. This is the right place for the best information on CH.
If you have been snooping around here for a while then you will be expecting this... do you have oxygen and have you read the oxygen info link on the left? This one treatment can be enough to get your life and sanity back. Also, tell us what your current treatment plan is with your doc? We all learn from each other here.

Title: Re: My first post
Post by Guiseppi on Oct 11th, 2012 at 8:17pm
If all the traditional meds are failing, consider our sister board, clusterbusters.com.

JOe

Title: Re: My first post
Post by Bob Johnson on Oct 11th, 2012 at 8:20pm
Since you have a couple of good docs in you camp these two ideas are from the bottom of my idea barrel. Sorry...

As them if this approach has gone thru their evaluations:

Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
==================
This med is effective as an abortive but note the one line comment: it had totally stopped Cluster in a few cases.

Headache 2001 Sep;41(8):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.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

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.

Title: Re: My first post
Post by ekahan on Oct 13th, 2012 at 3:11am
10/12/12:
REPLY: I am currently taking Verapamil 360 mg. Topomax 100 mg. Oxygen 7ml for 15 mins as needed. mostly for 2AM episode. Imitrex injection as needed. Wellbutrin for mode swings.

So far, all this is doing is taking the edge off of the pain. At night the pain is 7-9 on a 1 - 10 scale, 1 being pain free and 10 being incapacitated. During the day, I get spikes that are usually 6-8 but do not last too long. Needless to say, I am pretty much confined to my house, the Dr.'s office or I go out for walks. I have not worked since Mid April.

The Oxygen actually has caused the pain to increase more often than not. the Dr. says to keep it so I am.

I got an Occipital Nerve block done on June 25th. All that did was cause incredible HOT FLASHES and intense pain. I was laid up for 4 straight days. I got three shot of Demerol with no true relief.

I am not a complainer, I accept my situation and do what the Dr.'s try. If they are unable to get a handle on this I will begin to look else where. My Brother is a Dr. in Boston and has offered to help.

Title: Re: My first post
Post by ttnolan on Oct 13th, 2012 at 3:55am

ekahan wrote on Oct 13th, 2012 at 3:11am:
Oxygen 7ml for 15 mins as needed. mostly for 2AM episode.

Don't mean to sound flip... but this is not using oxygen correctly...
Did you read the oxygen info link on the left?
We need 15 lpm or better hyperventilating with the proper non-rebreather mask.Like this one... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
I promise you this is worth every effort to get perfectly right. The immediate benefits of doing so will change your life... and if you happen to be one of the rare ones it doesn't work for?... well pursuing a life changing treatment is always worth every effort!
Please read this new thread on this board...
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Title: Re: My first post
Post by Kevin_M on Oct 13th, 2012 at 7:35am

ekahan wrote on Oct 11th, 2012 at 5:14pm:
I am currently taking Verapamil 360 mg. Topomax 100 mg. Oxygen 7ml for 15 mins as needed. mostly for 2AM episode. Imitrex injection as needed. Wellbutrin for mode swings.


Sometimes small tweeks to a treatment can make a world of difference.  Raising the oxygen flow can be more effective.  Taking the Topomax before bed can make side effects more tolerable.  An increase from 360mg/day of verap to 480/day could be the preventive corner-turning that keeps them at bay.

An old adage goes something like: Battle plans usually don't last much further than the first engagement of the enemy. 

Changes and alterations can be necessary.

Title: Re: My first post
Post by Bob Johnson on Oct 13th, 2012 at 8:54am
As effective as oxygen is for short-lived attacks, it doesn't have long lived action. As you attacks appear to be long, you need to explore the use of triptans with a long effective life--there are seveal from which to choose.

Top. is not first choice (see PDF file, below). Discuss with the doc shifting to much larger doses of Verapamil. The track record is superior.
===
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.


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: My first post
Post by ekahan on Oct 14th, 2012 at 4:21am
Good evening all,

Bob, I appreciate your information regarding Verapamil. I have recently begun the 360 treatment. We are planing on going to 480 over time. I take several other meds due to other conditions. That makes some of the treatments a little tricky. I have Severe COPD, Enlarged Prostate, Cervical fusion of C3/4, 5/6, 6/7 and a total knee replacement. All in the last two years. Oh. I also have High Blood Pressure. So we are working at changing all my meds over very slowly. Currently I take the Verapamil 120 in the morning and 240 at night. I will present this info to my Neurologist and see what she has to say.

Hi Kevin, Thanks for the info as well. I agree small tweeks. I truely trust my Dr.'s so far. They are very good. We are taking a very methodical approach to this. I have had CT scans with and with out contrast, MRI's the same way, X-rays, virtually every test imaginable. Nothing stood out. No tumors no blockages etc. Thank God. I have had this now for quite some time, but I still feel that the Dr. needs to take her time and give each change time to settle in and do what we hope it will do. To date unfortunately, nothing has stopped the pain yet.

Taking 2 Hydro codone 10-325 right after the 02 treatment
and then sitting out side in the dark tends to alleviate the pain to a point that is somewhat bearable. #8.

Hi ttnolan. I appreciate your info regarding how much oxygen. I will present that to my Neurologist on Tuesday when I meet with her again. I am utilizing the proper non-rebreather mask.

Title: Re: My first post
Post by -dvb- on Oct 15th, 2012 at 4:44pm
Hello ekahan,

   Didn't see this mentioned yet. If you haven't already, goto the "Medications, Treatments,Therapies" section and read though the thread "123 Days PF and I Think I Know Why". It's a Vitamin D3 regimen that's been helping a good number of us. All over the counter. It's a long read, but worth it.

Sorry you have to be here, but you're in the right place.

-dvb

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