Dang.

This cycle is quite strange to say the least. Normally it begins with the coming of spring and ends just at the start of summer. I am still having hits of the strangest sort.

Let me start at the beginning of this bout. This cycle started in late February. All was normal; 2 hits per day. One while sleeping at 1:30am and one after waking about 9:00am. Enter knee injury and surgery. Frequency went to 4-5 hits per day of kip 6-9 after a week of nothing. I was then diagnosed as having CH and prescribed a Pred taper with nothing else. Hits went away leaving just shadows. Pred was gone and everything came back full force.

New doctor and another Pred taper with Topamax. Heavy shadows near constantly. Topamax side effects were way to much to handle. Suicidal, extremely disoriented, mood swings and personality changes. No response from doctor to my requests to change meds. So, another new doctor.

Now Verapamil. New doc has gotten me to see a new Neuro now. First visit is in 9 days. The verapamil is only at 120mg currently to no avail. We are now at today.

The hits are very sporadic now. No regularity to them what so ever. Sometimes 1 per day, some 4 per day. Throw in an occasional 3 days PF. They are mostly kip 6-7 and are very short in duration.

I've told you all of this to ask a simple question. Could all of this medication switching and what-not have extended my cycle, or am I just experiencing a tricky beast this round? I hate my head.

Eric

Eric,   Not being a Dr. please take my advice with a grain of salt and just something to think about.   If I were you I would suspect that those meds you've been on could very definetly have a LOT to do with extending your cycle, but please don't get off anything w/o checking with your Dr.    You will most surely need to wean off them or go slowly in tapering down.

   Good luck to you my friend.

Linda

Quick changes in meds and doses, at the very least, blocks the time needed to become effective. I wonder if you are seeing a doc who has experience with complex headache disorders?
------
Verap dose too low!


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).

Hey Eric,

Sorry the beast hasn't lost your address yet.  He can be a stubborn bugger.

I too think that meds can change and extend a cycle.  However I still think life is better with them than without.

You use the word "only" in describing 180mg of Verapamil.  So I guess you know that is a very low dose.  That'd be what I'd be working to change with my Dr.

I hope you catch a break soon.

-Dennis-

O2, O2, O2!!!

Talk to your doc about it.... 15 liters with a non-rebreather mask. It works so well for so many of us. That should be your first line of defense.

Energy drinks (Red Bull, Monster, check for caffeine and at least 1000 mg of taurine in them). Chug at first sign of hit. This will sometimes abort a hit.

You didn't say what dose of Topamax you were on. I take the whole dose at night and don't experience the side effects. It's been my miracle drug, but that's just me.

Here's hoping something starts working for you...

Hugs BD

The anwser to your question from my stand point is yes. i think meds in general prolong the cycles. from what i read it seems every cycle has its own set time. Like if joe is due for 26 hits during that cycle, it ramps up to 26. if its 14 its 14 and the meds prolong it, or i could be very wrong on all these issues because the beast does what he wants!! all i know is i take no meds right now and im in remission. Coach Bill

I do have my prescription for O2. I am merely waiting for the funds to get it all rolling. I drink the energy drinks (Rockstar juiced Guava. see my avatar)

I had been up to 200mg/day of Topamax. We rolled it back to 100 after a week or so. Had that for about 3 months. Couldn't take the side effects. My new GP started me on Verapamil while waiting for the Neuro appointment. The dose of 120mg/day is quite low I know. I'd prefer no drugs at all, but He said he doesn't want me in pain while waiting for the neuro. 120mg has not stopped them. As a matter of fact one is brewing right now. Stupid hypothalmus. Maybe the Neuro will up the dosage to a more useful level.

Dang, I need an energy drink. If I get one in me quick enough the hits seem to go rather quickly. Like 15 minutes max. Not too shabby.

coach_bill wrote on Sep 1^st, 2008 at 9:04am:

The anwser to your question from my stand point is yes. i think meds in general prolong the cycles. from what i read it seems every cycle has its own set time. Like if joe is due for 26 hits during that cycle, it ramps up to 26. if its 14 its 14 and the meds prolong it, or i could be very wrong on all these issues because the beast does what he wants!! all i know is i take no meds right now and im in remission. Coach Bill

What?

wrote on Sep 1^st, 2008 at 9:04pm:

coach_bill wrote on Sep 1st, 2008 at 9:04am: The anwser to your question from my stand point is yes. i think meds in general prolong the cycles. from what i read it seems every cycle has its own set time. Like if joe is due for 26 hits during that cycle, it ramps up to 26. if its 14 its 14 and the meds prolong it, or i could be very wrong on all these issues because the beast does what he wants!! all i know is i take no meds right now and im in remission. Coach Bill What?

Jonny- I think this is what he means:

Some people believe their heads are somehow "preprogrammed" to have the hits and that they have to happen. They therefore believe that all you are doing with prevents is delaying what has to occur sooner or later.

Have I got that right Coach Bob?

W

added to say that I don't personally think this although Coach Bob is not the only person who believes it to be true but I do think sometimes that when I feel a "hit" brewing, I know I can't avoid it so I just want to make it hurry up and happen so I can move on

DeStijl wrote on Sep 1^st, 2008 at 8:58pm:

I do have my prescription for O2. I am merely waiting for the funds to get it all rolling.

what do you need? have you looked on ebay?