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Cluster Headache Help and Support >> Getting to Know Ya >> Newbie.
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Message started by wornwhite on Oct 8th, 2012 at 3:56pm

Title: Newbie.
Post by wornwhite on Oct 8th, 2012 at 3:56pm
Hey all - I've been obsessively reading your site for a few weeks now.

Last year I had what I still think was a migraine - light sensitive, sound sensitive, nauseous - for 7 days. Went to the ER and they put some meds in my veins and I went about my business. But they handed me a sheet that said I had cluster headaches. Psssh.

This time - I had a headache hit me on August 3rd that is still going strong. I have been through everything, and finally on my 4th neurology visit today, he diagnosed me with Cluster headaches. We looked at my MRI together & it is normal. I had a nerve block and it did nothing. I was on the prednisone and it did nothing. The Topamax caused me too many side effects. I started Verapamil today. I hope to God it works because I'm so tired of screaming on the floor, "Why is this happening? I'm going to die." I also have Alsuma or sumatriptan injections for emergencies but they are so expensive. I just got oxygen today too.

The thing that I was wondering is - when you guys say you abort your headaches, do they go away completely? It always feels like a needle is in my eye. When the Beast attacks, it just feels like it is actually ripping my eyeball out of the socket. When it calms down, I have a pinching or small needle feeling in my eye, tingling all over my right side of my head and a bit of pain in the back of my head. Does this happen for any of y'all? Or are you completely PF between attacks?

Any information would be helpful. Going on 10 weeks. I want to break this cycle so so so so so bad.

Title: Re: Newbie.
Post by Bob Johnson on Oct 8th, 2012 at 4:28pm
After we go thru the major thundestorm of a cluster attack the few rain drops which remain are not worth our attention! Yes, there can be some residual pain but it could also signal that you meds are not yet at a sufficient level to do the whole job.

And, with a new case of Cluster, not unusual  for it to take weeks up to a year, or so, for a stable picture becomes stable. Not to worry; quite normal. So pain, location, duration--all can vary.

Neuro a headache specialist or a general neuro?

Pred. should knock out Cluster within 24-49 hours. If it doesn't, suggests the need to start a new series with a higher starting dose. Up to 100mg starting is not unusual.

Re. Verap: Takes a week or so to get into full effect AND not unusual to have to adjust the total dose one or more times.
---Suggest you print this article. If you doc accepts the dosing info as O.K., suggests he knows about Cluster. If HE runs from this material, take as a signal that you may need to make a change--just a maybe....
====
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.
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Did you get an abortive other than Pred? The Pred is for very shot term use and should be replaced by another one of the standard abortives for longer term use. The Verap (and like meds) work to reduce frequency/intensity of attacks. Abortive kills, preventive works to reduce the need for the abortive.

Print out the PDF file, below, and use it as a discussion tool about his plans.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: Newbie.
Post by wornwhite on Oct 8th, 2012 at 4:29pm
or maybe this is what you mean by 'shadows'? i'm terrified of the Beast all day long and feel it in my head. I usually get hit late afternoon, early evening, and when sleeping.

i just read a ton of the d3 thread and am heading to the pharmacy NOW. i'd rather be on vitamins than prescriptions (not that i'll drop any scrips, but hopefully it helps.)

Title: Re: Newbie.
Post by wornwhite on Oct 8th, 2012 at 4:32pm
just a regular neuro. but he did talk about increasing the dosage of verapamil. i just got two referrals to two different headache specialists clinics (one in austin, where i live alone) and one in fort worth (where my parents are, and have been helping me through this).

my prednisone was DEFINITELY not that high of a dose. it did help the first day, but the taper just set off the attacks even worse.

thank you for your response.

Title: Re: Newbie.
Post by Guiseppi on Oct 8th, 2012 at 5:52pm
That's how I typically respond to prednisone. While on it, I get 100% relief, as soon as I go off of it, if I have no other prevent on board, I get creamed! Like beasty is making up for lost time.

If you haven't already done so, read the 0xygen info tab on the left. if not used correctly it won't work. The keys are getting 100% oxygen to your lungs at the first sign of an attack. This is best accomplished using a NON RE BREATHER MASK (critical, re breather maks and nasal canulas all but guarantee failure)....and a high flow regulator, minimum of 15 LPM, some need to go 25-45 LPm to get relief. If I catch them at the first sign, I go pain free in 6-8 minutes.

Stick with that D-3 regimen, there's too many people getting relief for it to be coincidence.

Visit our sister board, clusterbusters.com      see the link bottom left, for some alternative treatment methods. Glad you found us.

Joe

Title: Re: Newbie.
Post by ttnolan on Oct 8th, 2012 at 9:50pm
Definitely read up on the oxygen info link and GET IT RIGHT. Order the O2ptimask from this site, it kicks butt. O2 is the only way I can completely clear out my head... with meds only, it can take hours for the shadows to go away, if they ever go at all.

Title: Re: Newbie.
Post by wimsey1 on Oct 11th, 2012 at 8:10am
O2 is the best abortive when used properly, and it can be made portable using E tanks. Couple that with an energy drink and most of my hits abort within 3-5 minutes. Just curious, didn't your doc suggest other abortives like imitrex injections or nasal spray? Or Migranal spray? They are effective and when part of our arsenal, expand our ability to do battle against the demon. Blessings. lance

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