Guys, Imitrex was working but I've already used two injections today to successfully ward off the beast. This third one is a motherbeast and it's now going on four hours. The worst of the pain has past but this thing will not go away. I don't have oxygen.

I'm taking verapamil 120mg twice a day (have been doing this every day for the past four years and am only now having clusters again). Should I chug some caffenine? I know you're not supposed to on verapamil, but I don't really care right now. I so want to just stick an Imitrex needle in my temple right now, 24 hour period be damned.

Also, my doc just perscribed prednisone, but the side effects list is pretty freaky. Imitrex was working so wonderfully, but this is my third headache today, first time that's happened, and I've used up my two allocated doeses. I've read that Imitrex may be bad to use a lot of...any thoughts?

I took some melatonin last night under the recommendation of my doc, but I think that may have made things much worse.

I have a tumor on my pineal gland, and also have narcolepsy. Add in clusters and that's some suck. But it stands to reason that they may be related. I wonder if I'm getting too much melatonin as a result of the tumor and that's causing the clusters. I don't know. This hurtssss

Sorry if this is hard to read, I'll try and edit it once this thing ends. Right now I'm typing in between bouts of squishing my head. If anyone has any information at all or thoughts or theories or anything please let me know.

Thanks!!!

almonddream wrote on May 26^th, 2010 at 1:33am:

I'm taking verapamil 120mg twice a day (have been doing this every day for the past four years and am only now having clusters again). Also, my doc just perscribed prednisone,

I am supposing the verapamil was previously started as a preventative, however, you maintained it during four years of no clusters and now with this episode it is not adequate at preventing, so prednisone has been added.

If episodic, usually a preventative is not necessary between cycles.  At at this point though, with the prednisone, it might be a helpful time to step up the verapamil dosage.  At times, 240mg a day can help, or can be undergunned.  There are times when elevating the dosage gradually can achieve prevention again. 

Perhaps your doctor is hoping the prednisone will knock out the cycle, but when the taper has ended, you will still be at the ineffective level of 240mg/day.  If he were to prescribe a gradual increase of verapamil during this pred taper to 360, better results could follow the taper, and even then, if he prescribes, 480 just might bring the level of effective prevention fully back and may be needed at that level for only a short while.

An oxygen script would be great abortive addition through this.

Get some oxygen. You won't regret it. Read up on how to use it on the little oxygen info link to the left.

And who said you're not supposed to have caffeine while taking verapamil? That person lied. It's TAURINE you're not supposed to have in great quantities while taking verapamil. The combination can mess with your heart rhythms.

First, are you seeing a headache specialist or ???

Second, are your statements reflecting your doc's judgments or are these your thoughts? Reason I'm asking is that you are making some assumptions which are incorrect and, therefore, increasing your anxiety.

The pred. does have side effects but only when misused in terms of time/dose. As used to abort a CH cycle, it's used for about 10-days on a decreasing dose schedule. It will often stop attacks immediately but then a long term preventive is used.

Your Verap. is the most commonly used preventive but your dose is on the low side. Print this and discuss with your doc:

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.
==
Your comment about melatonin sounds like a guess which creates confusion. One dose will not induce big changes in CH.

The pineal gland: is this your conclusion or your doc's thinking? Again, the impact on your emotional state is the issue.

We know that CH is a demanding, stressful disorder to cope with but I'd really encourage you to learn about it so that you don't increase your distress.
=========



 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
======
And see the PDF file, below.

---

I have used steroids with great success to stop a cycle in 1 to 3 days, but as stated here, your cycle will start back up when stopped, 1 or 2 days after. I noticed increased appetite, insomnia, and a euphoric energy feeling(5% of people experience this I'm told) but nothing that led me to question whether to continue that line of treatment. For reference, in the past 10 years, I've taken prednisone 60mg for 10 days then a 5 mg taper every 3, and I've also taken methylprednisone and dexamethasone in 7 day stretches. All worked great for me, and specialist prescribed.
Currently I'm on 1200mg lithium, 360mg dilt-cd and those side effects are much more pronounced but they're working.
And get OXYGEN, once you try it you will understand why everyone here pushes it....

IT IS CRITICAL FOR YOU TO START INJECTING YOUR IMITREX AS DESCRIBED IN THIS LINK:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This will save you immediately, like right now, as it has me and countless others.

And of course you'll want to get some hi flow non rebreather O2 ASAP, plus read up here on the wide assortment of other approaches that can help revolutionize your CH experience.

I have just logged in but if you have a friend or access to welding oxygen it will work in a pinch. I just inhale directly from the valve, shut off valve, exhale, take a couple of breaths than open valve and inhale deep, repeat for about 5 minutes or until you feel head ache subsiding. This may not be the the most sanitary way to get your oxygen but desperate times call for desperate measures.

I've had CH for over 25 yrs. nothing seemed to work until I started getting trigger point injection in my
greater occipital nerve. Usually takes 2 shots. 1 shot then another 7 days later and no more CH's. Been taking the shots since 1998 from a vascular surgeon and they usually last 1-2 1/2 yrs between cycles.
My last cycle started in April went to doc. and have been PF since my 2nd shot over a month ago.
My last shots lasted 29 months before this bout started. I usually take Robaxin (Methocarbomol) which is
a skeletal muscle relaxer and Xanax.
I know most are skeptical but I had these CH for months at a time 5-6 hits a day for up to 2-3 hrs before the pain went away. But my neck always stayed sore and this was all before I tried the trigger point inj.
O2 doesn't work for me, nothing works except the shots, believe me I have tried pretty much everything that was out there to try.  keeping calm is key during a hit and if I can roll my shoulders and relax and get chills to go down my back it's just like flipping off a light switch and the pain is gone. Staying away from caffeine was one of the things that triggered long lasting cycles, alcohol triggered a hit usually within 30 mins. Smoking also was a trigger. Had to quit them all. I could go on but I hope this gives you a different approach to stopping the cycles and lengthen the time between the cycles. My doc is in Altus, Oklahoma
and he tells me that there is very few Drs. that will do this procedure. Hope this helps, hang in there and
God Bless. I have other posts on the guest book and on the medication, treatments and therapy posts under occipital nerve block.
Curtice

bustedfor30 wrote on May 26^th, 2010 at 11:01pm:

I have just logged in but if you have a friend or access to welding oxygen it will work in a pinch. I just inhale directly from the valve, shut off valve, exhale, take a couple of breaths than open valve and inhale deep, repeat for about 5 minutes or until you feel head ache subsiding. This may not be the the most sanitary way to get your oxygen but desperate times call for desperate measures.

  BULLSHIT.  Don't do this it will kill you.  The valve on the tank cannot regulate the amount of o2 you get.  It is a valve that is on or off no middle ground.  Get a regulator.

      Potter

While "Bullshit" is just a whisker harsh! :D....we used to do the same thing off the helium tanks to talk funny!.....there are a couple of risks with using that method. Obviously overpressuring your lungs and embolizing (sp?) would be a concern. As would the problem of not getting 100% 02 as you'd still get outside air.

Assuming you understand that, my only suggestion would be creating a bag set up to capture the air and inhaling off of that. But I hear you, any port in a storm when you need 02.

Joe

Guiseppi wrote on May 29^th, 2010 at 11:21am:

While "Bullshit" is just a whisker harsh! :D....we used to do the same thing off the helium tanks to talk funny!.....there are a couple of risks with using that method. Obviously overpressuring your lungs and embolizing (sp?) would be a concern. As would the problem of not getting 100% 02 as you'd still get outside air. Assuming you understand that, my only suggestion would be creating a bag set up to capture the air and inhaling off of that. But I hear you, any port in a storm when you need 02. Joe

Dead is harsh.

     Potter

Anybody who thinks they could control the flow of gas from an oxygen tank pressurized at 2,000 psi just by using the valve and no regulator while in the throes of a cluster headache attack with their lips planted firmly around the outlet either has my undying admiration or has a screw loose. Or both.

I think I might be scraping my tonsils off the wall behind me.

Potter wrote on May 29^th, 2010 at 11:25am:

Guiseppi wrote on May 29th, 2010 at 11:21am: While "Bullshit" is just a whisker harsh! :D....we used to do the same thing off the helium tanks to talk funny!.....there are a couple of risks with using that method. Obviously overpressuring your lungs and embolizing (sp?) would be a concern. As would the problem of not getting 100% 02 as you'd still get outside air. Assuming you understand that, my only suggestion would be creating a bag set up to capture the air and inhaling off of that. But I hear you, any port in a storm when you need 02. Joe Dead is harsh.      Potter

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
i know none of us are stupid enough to take the valve of with a crescent wrench however....