Hi Everyone, I'm Renée.

I live in the UK (although American by birth) and I'm a post-op male-to-female transsexual. My clusters are a result of the hormones I took during transition from male-to-female, and they started about 4 years ago while I was on HRT.

They aren't quite your everyday run of the mill clusters, but do follow enough of the criteria to be classed as a cluster, although are shorter, usually about 15 minutes. Which of course means abortives like imitrex or Oxygen don't have time to work. I generally have to suffer through, but thankfully they are short. Not thankfully, I generally get hit once or twice a week, and 1-3 attacks each time. Yes, I have been seeing a neurologist, and have been properly diagnosed.

Mine are chronic, and this year I've been having a maximum of a 9 day gap between major attacks, and less than that between the minor little annoying things that wake me up, but don't quite get me out of bed. I have a pretty huge range of headaches that don't really fit well on the KIP scale (I use 3 scales -headaches, migraines, clusters-).

My heart goes out to those of you who suffer hour long clusters. 15 minutes tears me apart. I have had them last 30 minutes, and longer, in the early days. And this year, they have started getting worse, more intense and longer. So I don't know what the future holds.

I'm on Topiramate at the moment, which is a wonder drug. But, I know one day it will stop working. I have to occasionally increase the dose as it is, and I know there is an upper limit to what I can take. It stopped working in Dec, and it took me a few months to get a doctor to approve a higher dose, and in that time my mood seriously, dangerously, dropped. I am just now recovering. I don't know what is going to happen when Topiramate stops working.

I live on my own. And although I have many close, wonderful and caring friends, I don't have any family with me. That makes it tough sometimes. Sometimes you just want to be held.

Anyway, that's me. I'll update my profile with contact details. I live in Suffolk, England.

Renée

You have an excellent support group: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Folks who have rapid cycles or very unstable cycles find it helpful to stay on an old line preventive, Verapamil, 100% of the time. This med has a long history of effectiveness and safety. Following is a protocol which is widely used:

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).

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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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A PDF file, below, is the latest overview of meds for CH with evaluations of effectiveness. May give you some new ideas.

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Hi Renee, welcome to the board!

I think you'll find there are LOTS of tips, tricks and sometimes downright revelations to be found here.  :) A great spot for info and advice.

I can see why you're focused on a preventative, since the duration of the attacks is relatively short.

Some folks are turning to the clusterbusters route that can be a very powerful (but not always legal) natural preventative.

Here's a Newsweek article on that subject: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Clusterbusting isn't for everyone (it's important to read the warnings here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE), but some are reporting that besides preventing their CH, it's also relieved their post traumatic stress syndrome (!).

Hi Renee

Don't rule out the use of oxygen even with fairly short CHs. Using a 25lpm regulator and a non-rebreather mask I kill my CHs in an average of 6 minutes by hyperventilating. If this works for you it could cut the duration of the CH by more than half.

I'd also go along with the suggestion to use verapamil (or similar) all the time. Also look at the use of vitamin D3 and fish oil as described in the post "123 days pain free" as a lot of people are getting good results using that approach too.

Hi, and thanks for the quick replies.

I seriously did not get on with verapamil! Or the long list of others that I've tried. Topiramate though, we are good friends.

I'm a member of Ouch, have been for a couple of months. Good people. Although I think I did freak them out a bit though. I'm not your normal cluster headache, or even normal migraine, sufferer.

For one thing, alcohol is not a trigger. It doesn't trigger clusters AT ALL. And in fact, for migraines, it is an abortive. It is, and I will STRESS THIS, a last resort abortive when all of my triptans have failed and I have to go to work (I run my own business, if I don't work, I don't get paid). So, if all else has failed, and I've had a migraine for 4 days, I'll have 3-5 shots of vodka and the migraine is gone.

And for clusters. Forget banging your head against the wall, forget oxygen... none of those abortives work for me. If I'm able, if I'm in a place where I can maintain control long enough I'll run a needle under the surface of my skin and out the other side. Maybe 2 needles, maybe 3. It's sharp, it's intense, and requires a bit of care. But it fully distracts me from the pain and can turn off a cluster mid-stride.

So far, those are the only tools I have. Yes, my neurologist knows about them all. He says to use them with care. Not only do they have obvious risks, but also with time my body may adjust and require higher doses. So I am careful. I don't have an addictive personality, and I keep a very detailed diary of every headache, medication and abortive I take.

In some respects, things are getting better. In 2007 I had a headache that lasted 7 MONTHS. And had migraines and clusters on top of that. That's when all of this started. I now have entire weeks when I don't have a headache, and that is getting longer. Sometimes nearly 2 weeks in a row. Working with my docs this year, and I am hoping to soon be free of the daily chronic headaches, or mostly free of them. And then I'll be able to cope with the migraines and clusters a lot better.

Renée

Interesting articles on the Clusterheads and chemicals. Thanks for sharing.

And, oh yes, post traumatic stress, can't forget that. Gotta love the curling up in a ball and crying your eyes out afterwards. Nothing like having the *insert long list of swear words* kicked out of you by your own body.

Renée

And....I'm gonna agree with Mike NZ here that looking into the kind of results that are being reported in the thread he mentioned about high doses of Vit D3 etc. could be well worth your time.

So much of what you have said about the experience of headache and failure of meds, etc. seriously arouses the possibility that you don't have CH.

There are a number of serious coinditions which sometimes appear to be CH but which are not. Suggest you print out this file and pitch to your doc.


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Hi Bob,

I read the cluster-like post earlier today, with a lot of interest. Although some of it went over my head, a lot of it was intriguing. I have wondered if my clusters are truly clusters, or SUNCT, or something completely different. At the moment though, I have such a range of headaches, I think we are just trying to get them under control.

I have had an MRI, and things came up clear. So no physical brain trauma to worry about.

I know it is hard to explain everything in detail, and harder to diagnose, via a post. But talking things over at length with my neuro, and he is quite sure I fall into the TAC triad grouping of headaches, although placing a finger on exactly which one of the types of headaches is a bit more difficult with me. They are extreme, is that not enough? (just kidding)

My neuro is a migraine sufferer too, which makes him more understanding than perhaps some. At least I like to think so.

As far as drugs not working and stuff. That is just me. Drugs have rarely ever worked on me, and always wear off quickly. Has been that way all my life. When I lived in the States, I always doubled the recommended dose before things would even start to work. You don't do that in the UK because meds here are pretty strong to start with, but some I have to anyway. But still, it's not unusual for meds to stop working, or for my body to reject them.

Renée

MoxieGirl wrote on Apr 20^th, 2011 at 5:41pm:

I know it is hard to explain everything in detail, and harder to diagnose, via a post.

We're not medical doctors here and even if we were we couldn't diagnose via internet postings.

If your neuro is having trouble working out the headache type(s) then it's obvious that things are far from simple.

It may be time to see another neuro who specializes in headaches to get a second opinion?