Hello, I've been a member here before but I'm lucky enough to get my episodes rarely enough to forget my password each time.

Anyway, I have a pretty straightforward questions: During my last episode, two years ago, a neurologist prescribed cortisone which I never got to use as the the episode had already ended by the time I got it. When I entered my current episode two weeks ago, I went straight to the cortisone as soon as I had had a few attacks and was sure it was a true episode, not really expecting much. The effect was tremendous though, with no attacks for over a week. As the dosage was tapered down, the attacks returned, and with a vengeance. My original neurologist had moved from town and I had to go through some trouble to finally see another one today.

Now, as I've understood it, cortisone is commonly given as a transitional medication while waiting for Verapamil or some other proper prophylactic drug to take effect. The neurologist I saw today was hesitant about Verapamil though, since I only have two attacks per day, and instead put me on a higher and longer cortisone dose.

I was originally happy to be back on it, but later remembered reading that prolonged cortisone use can lead to longer and more severe episodes, which I really don't want since I expect my episode to be over within a week or two. Is it true that I may risk worsening my episode by going on with the cortisone, or is Verapamil usually preferred solely because of the lighter side effects? I know that no one can take this decision for me, but might a week of attacks be better than facing the risks and side effects of more cortisone?

The dosage of Prednisolone I took first was:
40 mg for three days
30 mg for three days
20 mg for four days
10 mg for four days

and the new regimen that I'm hesitant about:

50 mg for three days
40 mg for five days
30 mg for a week
20 mg for a week
10 mg for a week

Wow. I'd stay away from that stuff unless the taper was 10 days or less.

Unless you're interested in signing up for a hip replacement.

Google "femoral head avascular necrosis."

That's the same regimen the vet gave me for my dog.  You don't mention oxygen as an abortive.

          Potter

Sounds dramatic. I know cortisone can have serious side effects but people, not just dogs, do take cortisone on a daily basis. Most people with autoimmune diseases, for example. Does anyone know though if cortisone can really make CH worse in the long run?

I've never used O2, mostly because the few doctors I've met have been reluctant to prescribe it without knowing wether or not it will work for me and I have never had a "chance" to try it in the hospital. I just moved up from nasal sprays to injections though.

Prednisone tapers worked for me the first time I tried them, but became less effective the next two times. O2 coupled with an energy drink is my front line abortive. I am chronic, and I can sorta understand why your docs are reluctant to put you on a prophylactic if you are "only" getting hit twice a day. But that's twice too much pain in your life and that's what they need to understand. You can go on a prophylactic and then come off a prophylactic. There is no evidence from a broad based study that O2 can hurt you in any way, rather the opposite. And it's only a prejudice that would keep your docs from letting you try it once prescribed. Get the O2 or get a new doc. And pay special attention to the link at the left. Print out the info and use a high flow regulator (25lpm+) along with a good nonrebreather mask. You'll find it to be heaven sent. Or so we pray. Blessings. lance

Two attacks per day is not sufficient reason to avoid using Verap. If, however, you have very short cycles (2-3 weeks) then his judgment is o.k. for it would take that long for the Verap to take effect plus potential for having to adjust the dose after a couple of weeks.

For a 2-wk cycle, Pred. won't be a risky treatment. However, if you usually have a longer cycle I'd push him on his plan.
===
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.

Steroids such as Prednisone, Medrol Dose Paks, Solu Medrol, etc. CAN cause severe side effects the more you use them and at higher doses. And as mentioned above, (AVN) A Vascular Necrosis is a REAL threat, not only to your hips, but to ALL of the bones and joints in your body. Unfortunately, I KNOW THIS FOR A FACT. Due to chronic steroid use to prevent Cluster attacks, I have AVN in both shoulders, both hips, both knees, and both ankles, for sure ... and I possibly also have it in both wrists and both elbows too. Some have already broken and been replaced and the rest WILL soon break and need surgeries to repair or replace (As the bones and joints "fossilize" due to lack of blood flow and oxygen). My personal advice is to stay away from steroid medications for Cluster headaches as much as you can, ie...take it only when the attacks are too frequent, too severe, etc...

Good Luck !

Arvid, The issue you are facing is not "do I use it or don't I". Rather, it's one of judicious use, skilled use, of an effective, if potent, medication which has been around for decades. Every med has its side effects and the skill is in being aware of them, their relative risk  compared to the benefit.

It's the polar extremes which you need to recognize and avoid. We have folks who are willing to change doses, mixed different meds, add and stop an Rx without any medical guidance or knowledge of what might result. The other extreme are those who declare all medications to be poison. If these were wise choices no med would require a prescription.

We go to docs because they have some knowledge and skills which we don't have.

Each of us has discovered something which has help us to control our Clusters. That does not mean that we know all that we need to know! And that's the point behind this long message: Link to: cluster-LIKE headache. Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Self-protection is, in the end, a responsibility which we cannot give away.

If I only got 2 hits a day I would definitely use nothing but oxygen! It got me through a workday when I was getting 4 a day. 5-10 minutes and you are back in the green. Get serious about this one! I get mixed results with steroids, usually negative.

Great post Bob! My docs all warned me that I could hurt my hip bone and end up in a wheelchair, but at those times, the cluster attacks were so frequent and so severe (There was NO sleep at all either), I didn't care. "Anything to stop the attacks". And I did have a bone scan that said everything was 'normal' ... then 2 months later my hip was killing me and I found out in 1 night that I had AVN all over. That does SUCK ... but I'd do it again if I had to ... just to stay alive.