I just stumbled upon this forum tonight, and feeling a bit overwhelmed with the content. I wish I'd discovered it a long time ago.

I had my first cluster headache about 11 years ago now. It was my second semester of law school and I was very stressed out. I had a headache that was not going away for days and was more irritable and grouchy then normal. Folks had noticed something wrong with my eye. It was drooping and filled with blood. Within a week I was stuttering like porky pig almost constantly, which finally sent me to the doctor.

I was living in a small town and commuting up to law school at the time and the Dr's were stumped. The pain was getting worse, and my speech was deteriorating rapidly. There was talk of a stroke, or seizures or a tumor and all sorts of tests were ordered. It took months before I was referred to a neurologist who took about 10 minutes of study, realized it was cluster's and put me on channel blockers. The pain went away relatively quickly after that, and remained gone for 10 years.

Last year, a week after a minor car accident though they came back. It was also 10 years basically to the day of when the first cycle attack happened. The affect on my speech was less potent. The stuttering comes and goes, but the pain was the same. I knew very quickly what it was. Luckily the neurologists here were more on the ball, and it only took a few weeks to get on an oxygen and verapimil treatment. It took longer though for the verapimil to fully work. I was off work for about 6 weeks. The cycle itself though lasted, even with the meds and 02 from January to early July, with the meds mainly reducing the number and severity of the attacks until the cycle ended.

I had hoped I might luck out and have a 10 year break between cycles, but no such luck. I got through January of this year without problems, but in February I started having breakthrough pain again. It was clear the cycle had restarted. We've upped the V dosage several times as well as using pred as a bridging mechanism, which buys me a week or two of relief here and there, but in the last week everything seems to be falling apart.

What had been down to 2 or so attacks a week, has ramped up to one a day, and the stuttering is coming back somtimes 2-3 times a day. (The stuttering does not seem to overlap with pain, its usually before or after)

When unmediated, I can have 5 or more attacks a day, the attacks can last an hour or more. Between attacks I have a shadow pain that is much lower in intensity but remains there as a reminder. The stuttering can become nearly constant, my eye droops and waters regularly and I make bad decisions, or am unable to follow conversations and/ore am generally disoriented. I don't know how common the stuttering is, but my job demands quite a bit of talking, and it is getting harder and harder to cover up.

I have a large 02 tank for the house, and have DHE vials (but I don't think I have the right syringes for them so I have not used them) I had auto injector imitriex i think last year, but it made me sick when I used it.

My doctor is suggesting something called an Occipital Nerve Simulator. I am of several minds about it. I guess I'm looking for advice on that. Maybe other treatments, also if and how folks have managed to find portable ways to use 02, as it has had the best track record of helping me so far.

Also as other general info, as there seems to occasionly be correlation on these issues, I do not smoke, I do have sleep apnea, i have been diagnosed with a vitamin D deficiency in the past.

Any help or advice at all would be appreciated. My 2 year old mimics my stuttering now when it comes, and I don't want her to pick it up.

Thanks

Hi and welcome

I too know what it is like to find this place and realise that there are people who know what I go through plus they know a huge amount about CH. It is life transforming.

And a great first post too with lots of detail about your experience, what you've tried, etc.

The stuttering is interesting. It isn't something that is too often mentioned here but it is something I strongly relate to for both my CH and migraines. My supporter can always tell when I'm about to have a CH even before I do as she says my speech is affected. It is more pronounced for migraine when one is near, so again it seems to be a reliable precursor / advanced warning. I'm not sure why it is happening, but I suspect it is related to neural activity in the brain relating to the CH / migraine, possibly as my mental focus is distracted by the symptoms away from speaking. Outside of CH / migraine time my speech is just fine.

It hasn't really been an issue with work as I know when it happens and try to ensure that I treat it as the start of a CH or migraine and kick off my abortives. Since it is an early warning it also means that most abortives are more effective as the earlier they are kicked off the better.

Verapamil is a pretty effective preventive. What dose are you on? Many people get relief with 360-480mg a day but some people go to over 1000mg. It takes about 7-10 days for a dose level to become effective as you have noted. Different people work best on either the sustained release or the instant release versions. So the combination of dose and release type is something your doctor can adjust to get a better preventive effect.

Oxygen is a great abortive. There is an information page - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Make sure you've a non-rebreather mask and a high flow rate to get the best out of this. I use 25lpm and I can abort a CH in under 5 minutes, which means a whole lot less pain than before I had it.

For when out and about I either take a full size cylinder in the car or I've a smaller one that can fit in a backback which is easier to move around with, e.g. taking it into work, although it doesn't last as long. Just a matter of working out what works best for you.

I'd also look at how a lot of us (about 80% of people who tried it) are getting great relief from vitamin D3. I've gone over two years CH pain free and some are over three years. Your deficiency is not too surprising at all since so many of us are deficient.

For your questions about the Occipital Nerve Simulator there have been people who have tried them but the reports seem to be very mixed as to how effective they are. It isn't something that is at the top of my list to try.

Also try out energy drinks with both caffeine and taurine, like Red Bull or Monster. When drank quickly at the start of a CH they can drop the intensity and duration, which can be great if caught out away from your abortives.

Keep reading and you'll learn lots more plus ask all the questions you can think of too.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Urge you to not start trying other treatments while working with any doctor who is also Rx meds. Confuses the picture so that neither the doc or you will know what is/is not effective.

Also suggest that you ask your present doc about his training/experience with Clusters. Majority of neurologists
have remarkably little training around complex headache disorders--contrary to what you would expect.

If you have the option, our experience says: work withs a headache specialist.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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Print the PDF file, below. It's a good tool to guide discussions with the doc and if you don't see these meds and DOSES at the core of the program.....

Notably, around Verapamil: dosing often runs up as high as 900mg/day (unless you have a history of heart disorders). And using it for the long haul is the marjor barrier to attacks.

Short acting abortives (lists) are to kill, rapidly, attacks wich sneak thru.

Surgical approaches are some distance from being a first-order treatment until the major drugs have failed. Outcome studies are quite mixed, also.

Yes, there is much to learn so it will help if you ask specific questions so that we can give you some specific answers/sources of info. But excplore the buttons, left of this page and...

(Tuck this site aside for now. Bit advanced but a fine site once you get some  basic infor under your belt.)
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.

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Thank you both for your responses.

I think I have my profile updated now.

I'm currently on 640 mg a day. My neurologist seems uncomfortable with increasing that dosage much more. I went up to 640 about a month ago, I have been on 480 since last July and it had been well controlled until February when I started having the break through attacks again, it went up to 560, and then 640 during this cycle, but I am getting worse not better. I was referred specifically to this Neurologist because of his interest and experience with Clusters.

Oxygen has been the most effective treatment so far as far as abortive. I do have the proper mask, but had been using 8-10 rather then the 12-25 recommended here. I will certainly try the higher rate next time I use it.

I had not tried the energy drink thing before, or heard of it. I was actually weening myself off caffeine recently, and found that was exacerbating my stuttering and frequency of attacks, that would I suppose make some sense.

I want to look more into this D3 treatment, and will discuss it with my neurologist soon. I will work through the information you've provided and the rest of the site and post more questions as I get them.

I guess though my first question is how did you get a 2nd travel cylinder for the oxygen? Did you ask your doctor for a 2nd prescription, or is there another method?

As far as the nerve simulator goes, what sort of mixed results have people received? My voice is a big part of my job and the stuttering is causing all sorts of problems, so a solution as the verapmil seems to be losing effectiveness is pretty paramount on my mind.

My wife has some concerns about long term verapamil use. How much is safe and for how long? I've been taking it for just about a year now, and short of this surgery there isn't much in the way of a likelyhood that'll stop anytime soon, with the dosage increasing more and more to get it under control. How bad are these types of dosage in the long term?

Thanks again for all your help, and for providing a place like this. I've already found some relief in just little things like getting a name for the shadow headaches, and the kip scale make just discussing things easier.

Verap: when used for blood pressure control, folks may be on it for years wihout problems. When used for Cluster, at the high doses we use, regular EKG is advised. If a rhythm issue appears, you stop using and that commonly resolves the issue. BUT, as my previous attachment said, it's the most widely used preventive for Cluster.

Print for your doc.
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J Headache Pain. 2011 Apr;12(2):173-6. Epub 2011 Jan 22.
Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.
SourceDépartement d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002 Nice Cedex, France. lanteri-minet.m@chu-nice.fr

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877±227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003±295 mg/day) were taking higher doses than those without EKG changes (800±143 mg/day), but doses were similar in patients with SAE (990±316 mg/day) and those with NSAE (1,011±309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID:21258839[PubMed]
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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.

You might need another Rx for a smaller cylinder (E tank is maybe the best) and another regulator that fits on the E tank. Or the supplier may just be willing to give you what you need as part of the first Rx. That's what my supplier did. blessings. lance

I'm with Lance, APRIA delivers me a 6 pack of E Tanks in a little cart that sits in the garage. Once you have the prescription, the amount of oxygen should not be an issue. I use a demand regulator and a sugar free red bull to abort my attacks...at least I used to! 4 years pain free now on the Batch D-3 regimen after well over 30 years of episodic CH...really worth a test run.

Joe

Steal 20 bucks from the wifes purse and go to Walmart as soon as you read this,they are open 24/7,get on the D3 regimen. If there were more CH people Im sure big pharma would wrap the whole thing up in a pretty bow and sell it to us under some fancy name for a lot more than 20 bucks every 3 months.

shoot wrote on May 17^th, 2014 at 3:46am:

Steal 20 bucks from the wifes purse and go to Walmart as soon as you read this,they are open 24/7,get on the D3 regimen. If there were more CH people Im sure big pharma would wrap the whole thing up in a pretty bow and sell it to us under some fancy name for a lot more than 20 bucks every 3 months.

Well put Shoot!!! [smiley=thumbsup.gif]

Joe

I have started the D3 stuff, it has cleared my stutter up almost overnight, but I just had one of the worst attacks I've had since starting verapamil treatment. I read in the survey that some folks experience a temporary increase in symptoms before it takes full effect, so i'm hoping that's all it is.

Thanks again for all your advice and support.

Soo glad to hear it,dont miss even a single dose of your D3,try and get your levels checked,basically you have have to eat 5x that does of d3 for 6 months to even possibly approach vit d toxicity levels so stay on it without fail.

I found your post about stuttering interesting. I have never had that but when I was in my late teens and in most of my twenties, I often experienced a speech problem. This was either words out of sync or the wrong way round in a contextual way during a sentence.
This was nearly always a sign that a hit was on it's way and this was over twenty years before I was diagnosed with CH.
The D3 has worked for me so far.
I can't into words put me in to what it means ! ;)
Ellick.

About 5% of CH victims also have migraines. Any stuttering, aphasia, vision issues, etc. are usually equated to migraines instead of the CH. While this is medically the case based on the headache type definitions, it is clear that there is some relationship and overlap.

I often get migraine issues a half hour to an hour before an attack. It is a sort of shadow of the coming torment. It's so much less painful than an attack that it doesn't really bother me anymore. The cognitive and visual issues suck, but it also lets me know what is coming and I can prepare a bit. I call it the herald. It trumpets the coming of the monster intent on  catching me and tearing into my head. So... kind of a fun use of the word.

It is important to note that while CH victims can also suffer from migraines, not every doctor is adept to realize that someone can be sick with 2 things at once. I was pigeon holed back and forth for quite a while, depending on which Dr I was seeing at the moment.
Learn as much as you can, and it will save you a lot of headache. Sorry that's a bad joke.
I had to learn how to discuss the migraines and cluster attacks in different terms and as separate issues (regardless of their connection) until the individual Dr could get a handle on both issues.