I'm so glad to have found this place.  I'm newly diagnosed as a ch sufferer although I have suffered for nearly 10 years.  I'd been misdiagnosed 4 different times.  I'm now on a drug similar to verapamil and hoping it works.  I'm mid-cycle and hoping it ends soon.  Anyway, it's great to know there is a community out there that knows what it's like to go through this.  My husband doesn't get it, my folks don't truly get it and my boss doesn't have a clue.  It' awesome to know I now have a shoulder to cry on.  Here's hoping this is a short cycle. :)

Welcome Dweezel sorry you had to find us but glad you did!

We all understand here and you are correct most people do not understand or have a clue what we go through on a daily basis.

I hope you find the added support here to help get you through the rough patches.

PF Wishes to you!   8-)

Hi Dweez. Yes we get it alright - you're finally amongst those who know what you're experiencing.

MUCH more importantly though IMO, is that the pooled knowledge here has enabled so many of us to find much improved relief, and this could potentially be the case with YOU too.

It's critical that you study the info here, ask questions, etc., because the medical profession has very much failed many of us, evidenced in your typical case of 4 misdiagnoses.

Some good stuff to start with:

High flow 100% O2 as outlined n the oxygen info link to the left of this page (doctors don't ordinarily prescribe it this way)

Clusterbusters:
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The CH vitamin D3 regimen:
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The list goes on - others will likely be along to advise you further. You REALLY came to the right place - congrats.  :)

Hey Dweezel,

Welcome to CH.com.  You've come to the right place and please believe me when I say we know what you're going through.  Don't be a stranger or afraid to ask questions.  There are a lot of old hands around Clusterville who will be happy to give you their best.

Start reading...  There's lots of great stuff at the left and above the sticky line in each forum you'll find answers many of your questions.  If you're alerted to a message in your PM inbox or see "1 is new" in the upper left corner of this screen, click on it.

Take care,

V/R, Batch

Welcome to the board Dweezle. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. GP's know very little about CH and even garden variety neuro's don't know much more.  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can. ANYTHING Batch sends you on oxygen is well worth the read. He is the resident oxygen guru around here.

Joe

Hiya dweezel...welcome aboard...grab an oar and row...we're all crew...no passengers ;)

if that "drug similar to verapamil"  is Inderal (propranolol) ...it probably won't (reportedly helpful for migraines...and some docs think same same condition >:(). Get thee the REAL V (erapamil).

Best,

Jon

Jon and I are hearing the same tune.....


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.

Hello & Welcome to Clusterville

  At the top of this board in the "Important Subjects" lists, see and copy the "Letter to Colleagues & Employers" . . . this might help your friends/family/boss understand . . . a little anyway.

  I came here 2/02 after 13 months mis-diagnosis, non-working meds, multiple tests (CTs, MRI).  Was having 6-8 attacks daily, sometimes 3-5 at night, most Kip 5-9 . . . 20-45 min and the occasional 1 1/2 - 2+ hr horror. . . . was a basket-case . . . afraid to sleep, afraid to eat, always afraid of the next one.  This place gave me my life back and some control/understanding of this beast of ours.

  For me, Verapamil did the trick.  Had my first PF day (in over a year) when I got to 240 mg (considered the minimum effective dose) . . . had three attacks that night, but had 02 to kill them before the "dance" stage.  Got as high as 480 mg, then back to 360 mg maintenance dose.  As mentioned above, many take much more and often in combination with other drugs such as Lithium.

  Since 5/04, due to other medical problems, my preventive has been water therapy (see "water X 3" . . . link on left). IT IS NOT EASY to do.

  I abort with Rock Star energy drink, 02, and ice packs.

  Read, read, read . . . ask any questions you may have.  The info/advice you receive here comes from folks who truly know your pain.

   Be Safe,   PFDANs

     Richard

At the very top of this section is, Important Topics, where you will find a "letter to employers...."

Print and give to those who are having a hard time accepting what is happening to you.