Hi all, hope you are well. I have been on here before and although I have learnt a lot from this forum I sometimes realise I know very little! I'm feeling a bit lost and often want someone to talk to who understands and can hopefully offer some advice and maybe a few answers.

A little background, I will try to be brief! It started in summer '10 with a textbook cycle. I was painfree till January '11 when the temperature went from 5 degrees centigrade to 12 overnight. I started having low kip headaches that could last 10 minutes to all day or short sharp pangs that lasted 30 seconds. Generally all over the place but nothing really took hold till easter when I had 3 weeks off work and got hit every day. Returning to work I went back to my normal HA routine with more serious pain at the weekends. Strangely the best treatment I have found so far has been 70 hour weeks of shift work but then the wife gives me a different kind of headache!

So in Sept '11 I got diagnosed and started verapamil 240mg with imigran to abort. I was told I wouldn't be getting oxygen yet as I smoke but might get some if the triptans don't work or give me problems.

Over the last 6 months the verapamil has increased with the usual observations and I have just been told I can start on 800mg per day. The problem is I think it is working as the severity of my full on attacks has dropped by half and it's much more manageable but still unpleasant and not ideal so I have increased after 3 weeks or so when the HA's start to return. I'm not sure whether I am expecting too much from this drug or I need another treatment? I don't want to take too much of something if it's not working even though I am showing no ill effects (probably as I am an otherwise healthy 28 year old) and I don't know what the other options are.

The last few weekends it has changed, the pain has switched sides and affects my face much more than before. Its in my ear, top teeth, roof of mouth, cheek, eye, forehead and temple. While only maybe a kip5 I have gone back to the docs hence the 800mg. If this carries on do I carry on going to 960mg which is my max or do I try to see the neuro again sooner rather than later?

I sometimes feel guilty about moaning about it and going for more increases when I know there are many people worse off than me on here but I wanted to ask for any opinions advice or experiences with my meds or different scenarios. Any responses would be very gratefully read. Many thanks in advance.

Ian

Thanks Bob, I've not posted for a while as I have been pottering around waiting for the headaches to miraculously dissappear, first at the magical 480mg then again around 720mg. Seems I get a few good days inbetween starting a dose and around 14 days in. It seems the same with every increase I've had and no real changes since going above 480mg. Not noticeably anyway.

In answer to your question, I had not read about the olanzapine before. That may be of interest as one of my concerns was the effectiveness of sumatriptan of late. It used to work in 15 minutes (via nasal spray) and be complete relief. Nowadays I seem to get some relief but it leaves a little behind just nagging away. Another source for my confusion as I'm not really au fais with how CH can change. Something else I was going to ask about but forgot and I want to research as I like to know what to expect as much as possible! If possible!

My doctor is out of his depth but he does as told by the neuro and checks my ECG's, gives me supplies and referrals if necessary. I saw a fairly young neuro at a headache specialist clinic in a pretty large city hospital, who seemed to know his stuff. He explained the condition (told me nothing new!) explained that verapamil was the drug of choice and was first port of call and to come back if I had issues. He put my limit at 960mg so I figured he wants me at that limit before he moves on? I told him that I have had no clear cycle for around a year, only the low kip headaches which can vary in duration and the short blasts of pain which come and go and he said we should concentrate on stopping the severe attacks and that he wasn't sure what I presume may be shadows were. All in all he listened a lot and I felt reassured I was on the right track.

As far as abortives go, I try to get by without the imigran where possible as I'm not into unnecessary use and risk of rebounds/increasing HA's etc. Sometimes just coffee, food, fresh air or cigarettes do the trick. If not I have the 20mg Imigran nasal sprays which I may not touch for a months but last weekend had 3. No oxygen as I mentioned due to my smoking but the neuro said it could be worked around if we need to look at other options. They just hate giving up the stuff in the UK as far as I can tell!

Ian

Glad to read that you are doing better than I had assumed. Especially, pleased that you have found a specialist.

Re. "shadows". Obviously, not a medical term but there is a general agreement that refers to left overs/residuals of an attack; often resolved with OTC/non-Rx pain meds. The presence doesn't signal a failure of the abortives.

Re. your avoiding use of sumatrip. We have too much bad press/misunderstanding re. rebound. Some people use massive amounts without side effects; others, more sensitive. The general indication that the quantity used is causing problems is IF headache frequency is increasing  over YOUR personal norm. Response: stop using and if there is a return to the previous pattern of attacks, it's likely rebound. Then you change abortives.

But I really disagree with not using out of some unknown/unknowable future possibility. But I'm interested in restoring quality of life as the first priority even as you pay attention of possible side effects.

You've faced this potential with the high dose of Verap and decided to use it for its benefit even as you/doc monitor your heart for a potential side effect.

Deal with the demon you know--not the one which may be around the corner.

Re. Oxygen: It's gained wide support in the medical literature because of it's benefit and relative safety. The obvious limitations is using it when at work, etc. Secondarily, less effective than the triptans and less long term benefit per use (with implications re. work, travel, etc.)

As you read about olanzapine, it's convenient to carry/use; rapid & consistent action. If your doc is willing, a brief trial (2-3 attacks) will indicate whether it works for you. (For me, it has been the closest experience to magic I've known in this life: 20-minutes and the pain/tenson disappears like a light switch being flipped. No recurence, no side effects.)

Unfortunately, we can always ask more questionss than medical science can answer. We are always balancing benefit vs. risk and that calculation changes with the severity of the disorder being treated. For example, someone with severe pain from cancer would tolerate all sorts of side effects from pain med which would be out of question were it surgery to repair a broken hip.

This is the latest info I have on safety.
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Expert Opin Pharmacother. 2010 Nov;11(16):2727-37.
Sumatriptan therapy for headache and acute myocardial infarction.
Barra S, Lanero S, Madrid A, Materazzi C, Vitagliano G, Ames PR, Gaeta G.

SourceAntonio Cardarelli Hospital, Cardiology Unit, Via Antonio Cardarelli, 9, 80131 Naples, Italy. giovanni.gaeta@tin.it

Abstract
IMPORTANCE OF THE FIELD: Migraine is a common, debilitating, chronic neurovascular disorder. Triptans are considered the drugs of choice to treat migraine attacks; however, their use is limited owing to concerns about cardiovascular safety.

AREAS COVERED IN THIS REVIEW: The aim of this review is to describe: the mechanisms of action of triptans; the case-reports of acute myocardial infarction (AMI) associated with sumatriptan use; and the results of studies evaluating its tolerability and safety.

WHAT THE READER WILL GAIN: Sumatriptan administration can be followed, in close temporal relationship, by AMI in young or adult migraine patients. Some of these cases have developed in subjects taking their first dose. Based on the results of prospective studies,

THE RISK OF SEVERE CARDIOVASCULAR ADVERSE EVENTS AFTER THE USE OF A TRIPTAN IS ESTIMATED AT 1:100,000 TREATED ATTACKS. THESE ADVERSE EVENTS, ALBEIT VERY INFREQUENT, HIGHLIGHT THE IMPORTANCE OF CAREFUL ADHERENCE TO THE SUMATRIPTAN PRESCRIBING INFORMATION.

TAKE HOME MESSAGE: Inherent in its mechanism of action, sumatriptan could produce (coronary) vasospasm sometimes followed by AMI. The drug should not be prescribed to patients with history, symptoms or signs of ischemic vascular disease; an in-depth evaluation should be carried out in subjects at intermediate cardiovascular risk.

PMID:20977405[PubMed
---------
We regularly see comments that Sumatriptan changes the experience of CH--increasing frequency and/or intensity. What is usually missing are any data on frequency of this experience, duration of changes, source of the claim, and so on. Several years ago I searched medical literature for some specifics on this experience and could only find the two abstracts (below). In January, 2011 I searched for more current reports and could not find anything in the previous 10-years.

My conclusion is: the absence of later data suggests that there is little experience stimulating reports/study and that this is not an important problem. The last point is reinforced by the observation that in the few reported events, that the changes in headache reversed when Sumatriptan was dropped.

As with other medical topics, it's important that we qualify our "truth" claims with parameters/limits which don't distort real life experience.

It's not much help to people to warn them off using a good treatment with a silent implication that some side effect is widespread, enduring, even dangerous. We are always, with every medical treatment, struggling to balance benefit vs. risk. As we expect our physicians to fairly present the pros & cons of a treatment/procedure to us, we should, given our limited knowledge & skills, try to do the same.
==================================

Headache. 2000 Jan;40(1):41-4.

Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.
Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

Abstract
OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache in four cases. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine.

BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings.

METHODS: FOUR CASES ARE DESCRIBED.

RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE.

CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.

PMID: 10759902 [PubMed -
=======================================

Headache. 2004 Jul-Aug;44(7):713-8.

Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

Headache Centre, INI Grottaferrata, Rome, Italy.

Comment in:

Headache. 2005 Sep;45(8):1089-90.

Abstract
OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature.

BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial.

METHODS: Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described.

RESULTS: ALL SIX PATIENTS had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. IN ALL PATIENTS, THE CH RETURNED TO ITS USUAL FREQUENCY WITHIN A FEW DAYS AFTER SQ SUM WAS WITHDRAWN OR REPLACED WITH OTHER DRUGS. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache.

CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.

PMID: 15209695 [PubMed
---------
A most extraordinary report on massive use but safely!

Headache. 2011 Nov;51(10):1546-8.
Sumatriptan in excessive doses over 15 years in a patient with chronic cluster headache.
Kallweit U, Sándor PS.
SourceFrom the Department of Neurology, University Hospital Zurich, Zurich, Switzerland (U. Kallweit and P.S. Sándor); Department of Neurology, Kamillus-Klinik, Asbach/Ww., Germany (U. Kallweit); Department of Neurology, ANNR RehaClinic Cantonal Hospital, Baden, Switzerland (P.S. Sándor).

Abstract
We report the case of a 49-year-old lady with cluster headache, who had received sumatriptan s.c. treatment for 15 years with daily dosages between 12 and 222 mg (average of 150 mg during the last year). The therapy was successful in aborting CH attacks. Long-term overdosage of sumatriptan was well tolerated, without adverse events.

© 2011 American Headache Society.

PMID:22082424[PubMed]

I love imitrex......never relax..ever
tachead