Last night was my first attack in 2 years. I have episodic clusters and fortunately dr put me on prednisone today 100mg for 5 days then decrease. Luckily for the past 2 years I have been paying to keep the O2 here in my home and it helped a lot last night but this morning I felt like I was beat up by a baseball bat. Anyone have advice? I am dreading falling asleep and of course fearing the worst....another attack! I use to just beat my head on the wall as I can't bear the pain. Keeping in mind I have endured 2 back surgeries and am familiar with pain. But as other sufferers know this is pain like no other. If I can just make it through the night I know I will be ok. Please keep me in your prayers. I am a 33 year old woman who has suffered since I was 19 years old. I will in turn keep all other fellow sufferers and survivors in my prayers and thoughts tonight.

Hi Adriane and sorry to hear that the CH is back. Whilst you've got prednisione it's common to start on a longer term preventive, like verapamil, to give it chance to build up before the prednisione tapers off. Of course if your CH only lasts a few weeks then the prednisione will cover the episode.

Also read up and see if there is anything new since you were last here that might help you too.

Melatonin before sleep and have an abortive at hand

Another vote for a secondary prevent, the prednisone is a great short term med but shouldn't be taken long term as as it's too harsh on the body. Most of us start a longer term prevent, verapamil, lithium, topomax, etc., when we start the prednisone. Here's an example of the verapamil dosing you can show to your doctor. It's the most commen first line prevent and helps a LOT of people on the board:

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).

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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.


As seaworthy mentioned, melatonin helps many to avoid the nbight time hits. Start with 9 mg about 30 minutes before bedtime. Some go as high as 18 mg, it's a trial and error thing. Doesn't work for everyone but it's cheap and certainly worth a try.

Joe

Thanks for the support, yes the last few times I have tried verapamil as well as various blood pressure medications and none of them have worked for me before. I will get some melatonin and give that a try. Good news is I awoke at 4am and realized the 2 am CH did not hit. I didn't have one all night. Last time this happened the cycle flipped to getting them during the day. Keeping my fingers crossed that is not the case this time. I will keep posting. I live in Sac CA, are there any others out in this area I can connect with? Hope all is sellout there. Thanks again for the support.
Adriane

Not much but a non-invasive thing of mine was that when I slept in a recliner, it seemed that I had one less hit per night.

Charlie

A...
By all means get the melatonin. It works great on night hits (for most of us). Take it about 45 mintues before bedtime   it gets ya thru the REM sleep where the CH hits.

Hope this is a short cycle and that you're PF soon..  :-*

I use Benadryl and melatonin together at bed time. 

I will echo the melatonin advice.