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Greetings From Colorado (Read 907 times)
Jamz
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Greetings From Colorado
Apr 8th, 2013 at 9:46pm
 
Hello

Thank you to the folks that put this website together and keep it running. I'm a 30 year old male and have recently been diagnosed with CH, last week actually. Was prescribed Verapamil by the Neurologist and so far it has done nothing. Since about the first of March I have been getting these cursed things about 3 times a day. Boy do they take a lot out of me. Worst pain I have ever dealt with in my life, and I have been through some pain.

The worst ones come at night which in turn terrifies me to sleep. Only sleeping now when I am completely exhausted and my body shuts down. I've had to take a leave from work. Being in the IT field doesn't help much I suppose. I am very luck to have very understanding employers, just afraid of how long it will last.

Anyhow, for those who have found resolve with Verapamil, how long before you noticed any positive affects? Also was prescribed Idomethacin that I am supposed to take upon the onset of an attack. It does nothing but make my stomach feels as if it were bleeding. No relief, stopped taking immediately. Sometimes drinking a sugar free Redbull seems to cut the duration down. If it is a 8-10 CH nothing helps. I hate taking pills. Is there any other natural remedy that can help?

Thank you all. It helps that out there others share my pain. Not that I would wish this on my worst enemy, just nice knowing I am not alone in this seemingly downhill battle.

James

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wimsey1
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Re: Greetings From Colorado
Reply #1 - Apr 9th, 2013 at 7:54am
 
Hello James. Glad you're here but sorry you need to be. Here's some advice I often give for those who are new to the beast:

1. Find a good headache specialist-this is imperative. You don't say if you are seeing your GP, a general neuro, or a specialist. In the long run, you want the specialist.

2. Start a prednisone taper (starting around 80mg/day) You don't say you tried this but a bunch of us found good relief this way while waiting for a longer term preventative to kick in.

3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.

4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask. Chgging an energy drink before hitting the O2 helps me to abort quicker and the abort lasts longer.

5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.

6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.

It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance
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Jamz
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Re: Greetings From Colorado
Reply #2 - Apr 9th, 2013 at 2:03pm
 
Thank you for the reply.

I am seeing a specialist, the bad thing he is about 250 miles away. I am awaiting a phone call from him today actually and will ask him about the oxygen.

I was initially taking prednisone then cafergot from my regular doctor which neither seemed to help. Oh did I find out quick alcohol being a trigger. No more beers for this guy Cry

I have been keeping a journal of them. Times, 1-10 scale, if I took anything, did it help, and what I ate before hand if anything. As a test though I have went a day with only water, no food and still got slammed by them cursed devil headaches.

God willing they will subside in time, but I feel no relief and am going mad staying at home all of the time. Thank you for the advice. Peace be with you all.
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Bob Johnson
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Re: Greetings From Colorado
Reply #3 - Apr 9th, 2013 at 4:12pm
 
Most especially when you are writing/asking about meds, keep the Queen's guidance in mind:

     "More matter, less art!"
                 Queen Gertrude
                  HAMLET

It's impossible for us to give any guidance without: med name; duration of use; dose; any recent changes in dosing.

Verap is the most common/first choice of the preventive meds for Cluster. It's used along with med which abort an atack.

Print the PDF file for long term guidance.  Also useful as a tool to discuss treatment options with the doc.
--
A wide used protocol for Veapamil (note the dosage range).

-
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.
=====
For broader based information:


Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
------

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
-------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.


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Skyhawk5
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Re: Greetings From Colorado
Reply #4 - Apr 9th, 2013 at 10:11pm
 
James, welcome to CH.com, by reading and learning from here you will soon know more than most Doctors, about CH. CH is a very rare illness and Doctors get little training about them.

Verapamil usually takes 2 weeks or more to become effective at proper CH doses. Indomethacin is not usually helpful for CH, it is for another type headache, so your Doctor is trying to rule this out.

Good luck, Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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