Hello all,

I dont post often on the forums which I should because it has been a source of invaluable information. I got diagnosed about 3 years ago (about 4 cycles), and for a number of reasons, I was never treated with medication other than sumatriptan in its tablet form (since the doctors took so long to diagnose, and sumatriptan is used to treat migraines as well as cluster headaches), because first of all my GP lost the reccomendation from the specialist, and since then I have moved abroad and did not want to go to the doctors due to the cost.

Well another period started in october and after 4 months, I realised i needed to go to the doctors. I went 2 weeks ago and showed the doctor my letter from the specialist in the UK, explaining that I was a cluster headache sufferer and a few different treatments such as verapermill and oxygen. The doctor prescribed me verapermill and over the following week, I noticed a reduction in the frequency of headaches, but not the severity (if anything the severity increased). So i went back to the doctors last week and showed him this article:
(search google for: "ritalin for cluster headaches" and its the second link. I cant post links im afraid)

For those that dont want to read it, its a case study on a guy who was treated for CH with Ritalin (Methylphenidate) and said he experienced total pain relief within 10 minutes of taking the ritalin, and the end of a cycle after 1 week of prophylactic treatment.

I was extremely sceptical about this, but the doctor was not able to arrange oxygen, so I didnt see much other alternatives. I showed the doctor the report, and he prescribed the Ritalin. I started taking it on Tuesday (prophylactic), and have noticed a marked improvement. so far I am pain free, which granted is only 2 days, but I have felt the CH's trying to come at their specific time (11pm in the evening) but then they just dont. Its as if there is a barrier blocking them from coming.

I am still skeptical as it could be coincidentally timed with me going into remission, so I dont want to get peoples hopes up. I will continue to post my progress over the next few days, but I would be interested if anyone else has been treated with ritalin and how they got on.

Thursday:

I didnt sleep well thursday as I forgot to close the windows during the evening and woke up very very cold. I felt extremely sick so went back to bed around noon after waking up at 7 for morning exercise. I started getting my first headache since starting ritalin at 14:15 and took a tablet as soon as i felt it come on. At about 14:30, the headache was in full momentum at around a kip 6, possibly 7, with no sign of the ritalin helping. At about 14:50 the pain dropped down to about a kip 3 in about 5 minutes, I thought this was the headache coming to an end, but it carried on until about 16:00 at a kip 3 level. After that, I was left with a MAJOR (non CH) headache, the kind you get after a heavy hit, but not a kip 3. I therefore assume than the ritalin substantially reduced (but did not remove) the CH.

I had been taking the Ritalin between 15:00 and 16:00 the previous days, and I believe the ritalin was removed from my system, which caused the CH.

Friday: Felt the slightest hint of an attack at around 11:00, so took a ritalin tablet straight away before any further signs. Friday turned out to be a PFD.

Saturday: Took a tablet at 11:00, with no signs of a CH. I then wen the whole day without any signs. 23:00 I felt a CH coming on and due to time of day, I did not want to take a ritalin, as it would keep me awake. I braced myself in preparation for an attack that was barely noticeable (probably call it a kip 1) and was over within 10 minutes. I was already in bed, so I went to sleep and was fine.

Sunday: took a ritalin at around 9:00, and am still pain free today. I will take another at 16:00.

I believe that there is a slight overlap between taking pills, and that is what caused the headache on Thursday. I have now decided to combat that, by taking a pill 1 hour earlier each day, until i am taking it at 8 oclock and then taking another at 16:00 on the same day.

In the past 6 days, I have had 1 CH which is a marked improvement from just using verapermill, which constituted a CH almost everyday. I will continue to post progress over the next few days.

I am currently on 240mg twice per day verapermill, and ritalin 10mg in the amounts i mentioned above

Ritalin seems to have a fairly short half life of about 3.5 hours. This means that after 3.5 hours only half the dose is still active, after 7 hours only a quarter, etc.

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Quote:

In studies with Ritalin LA and Ritalin tablets in adults, methylphenidate from Ritalin tablets is eliminated from plasma with an average half-life of about 3.5 hours, (range 1.3 - 7.7 hours). In children the average half-life is about 2.5 hours, with a range of about 1.5-5.0 hours. The rapid half-life in both children and adults may result in unmeasurable concentrations between the morning and mid-day doses with Ritalin tablets. No accumulation of methylphenidate is expected following multiple once a day oral dosing with Ritalin LA. The half-life of ritalinic acid is about 3-4 hours.

There may be some variation between different preparations so I'd consult your pharmacist who should be able to give you the correct details for what you are taking.

If Ritalin is acting as a preventive for you then it is likely to take about an hour to take effect, then drop off in time as per the half-life. This means that you may be able to adjust when you take the medication so that it is at a high enough concentration to be effective at the peak times when you get CHs. So if you say get CHs around 5pm then taking a dose about 3.30pm could potentially be more effective.

Of course do not adjust your doseage or the timing of them without discussing things with your doctor.

Since you're also taking verapamil it is also possible to adjust the timing of when you take this too, plus mixing in if you use standard release or sustained release.

This is the sort of fine tuning you can do of medication when you get on top of when you get your CHs, what medication works for you and how it can be best used.

Hi MARC1985, Mike and all,

I watch this with interest as my specialist has proposed similar treatment for me. My specialist (Clinical Pharmacologist, triptan designer, Headache researcher and CH expert extraordinaire) has obtained approvals through the drug approvals board and ethics committees of our local public teaching hospital for one patient to trial Ritalin in CH. By all accounts, the patient has experienced absolutely no reduction in frequency of attacks, but a significant reduction in severity.

Hopefully this will soon be drafted as a case study and submitted for publication.

It may seem, from the very little we know about it, that we may speculate that a morning dose of Methylphenidate may assist in "resetting" circadian rhythm. All very speculative, indeed...

Now I can't preempt outcomes, I just hear the occasional whisper from the long hallways of the University... It seems the success of Ritalin in this Patient's individual case shows enough merit for similar approval(s) to be granted for use in my case. It's ready to roll when I am...

Personally, I think Ritalin is a bad choice for my own medical circumstances, it will work against every drug I am taking and probably increase anxiety for me.
I am very reluctant to take it.

There is also another regulatory hurdle to overcome here in Oz, in that of it works after an initial short trial, I report any benefit, I am then subject to supervision by a "Drug dependency Unit". Whilst this is certainly appropriate for this drug, it only adds to my reluctance to try it.

On the other hand, the desperation and duress of chronic CH does give one cause for considering any options... as you all know.

MARC,
I think you are referring to the only work in Ritalin and CH that seems to appear online, or anywhere in the literature - Dr Gary Mellick's work. I see you've not got link posting privileges yet, so I will drop these here:

A letter, written by the patient, to J.M and G.A Mellick, in which one can clearly feel the desperation of the patient's inquiry:

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I will post a link to the now, rather old case report that is hosted here on the site:

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Here is the same case study, as it was eventually published and appeared in the October 1998 edition of Headache Journal:

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Some input from Gary Mellick:


Quote:

Department of Neurology at Massachusetts General Hospital HOW HAVE PATIENTS RESPONDED TO RITALIN THERAPY? 1. Most patients have had rapid abortive headache relief. Prevention of future headaches occurs with a morning dose of Ritalin SR (20 mg). Being a chronic cluster patient does not doom you to failure. Several weeks ago two chronic cluster patients were able to stop their daily Ritalin SR after taking it for only six weeks and two months. They had NO headaches while on Ritalin. They are now headache free and not on Ritalin. For the first time in 30 plus years they are headache free! They are and their wives are happy campers and their wives with a new beginning in life 2. A few patients are less responsive to therapy and require chronic daily Ritalin. They still have headaches but experience a lessening of the headache pain levels from a 10/10 to a more tolerable 3 to 5/10 intensity. 3. Unfortunately, several patients have failed completely. Two patients who had undergone surgery did not respond to Ritalin. (One patient lived in Mississippi). This should remind us that Ritalin therapy failures are bound to occur in some patients. To the person posting the last note. If you are concerned about investing money in any new treatment that might not help you, my advise is don't do it. In fact the treatment may not be safe for patients with mood disorders, glaucoma, hypertension, etc. It is not FDA approved and is not yet standard therapy but some patients might find it helpful. The thought that these headaches happen as many as 5-6 times per night (or day) can be quite discomforting. My staff and I now better understand how cluster headaches can make life hell on earth how and how this affliction destroys people's lives. Hopefully, Ritalin will provide a much-needed, God-given respite for many people with cluster headaches. I hope this answers your questions. We are about to publish a series to help further answer this important question. God Bless, Dr. Gary Mellick

Mike, I think Ritalin SR 20mg may be key here.

It seems Ritalin (Methylphenidate) may also be cause for concern for those already taking drugs that prolong QT intervals. As this quote from | Headache | January 2013 points out

"HEADACHE MEDICATIONS, DRUG–DRUG INTERACTIONS, QTc PROLONGATION, AND OTHER CARDIAC ARRHYTHMIAS"


Quote:

Medications used to treat adult attention deficit disorder such as amphetamines and methylphenidate are also QTc-prolonging drugs and are frequently coupled with antidepressants in migraineurs.

See PDF attached (hopefully, sorry I could no longer locate a direct link for this paper, nor have I attached a file to this site before...)

I know I am going to ask some serious questions in relation to heart, request baseline ECG/EKG tests and have them closely supervised. I have heart arrhythmia from an "incident" shall we say... many years ago with unmonitored escalating doses of Verapamil for CH. I take Atenolol, a Beta-blocker. So my concerns in approaching Ritalin in CH are quite justified.

It may appear, from very old studies, that Ritalin has some varying effect on Vascular function, although any bearing on CH or how it is likely to be affected by Ritalin is sketchy...

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We need more studies and participants for them.
Good on you Marc for giving it a go.
My specialist does ask me to seek out any anecdotal, or reported patient accounts online, as supporting evidence for approaching the approvals process.
Your input helps others.

I hope it goes well for you and please, keep us posted.

In the bigger picture, I seriously doubt that even the best reported relief from Ritalin would be any contest for the D3 regimen. The best patient accounts (very few they are) are no match for the sustained relief Batch's collected D3 regimen figures are showing.
However, the mind must remain open!

Keep us posted Marc.

Cheers, Ben.

---

Appologies for not posting more often, I have been really busy with work.

Basically a quick update;

After I posted last, I noticed a good reduction in the amount of headaches i was having (Along with ritalin, I am also taking Verahexal SR 240mg twice per day). I also noticed that I stopped getting day time headaches, infact the headaches I have been getting were mostly coming on at around midnight when they occured.

This presented 2 problems. My doctor instructed me not to take ritalin after 5 PM, so by midnight, the effect of it had pretty much completely gone.

However there have been a few occasions where i had recently taken ritalin and got a headache. The headaches were markedly reduced in severity. Since starting ritalin and verapermil, the only headaches i seemed to be getting were kip 7-8, really REALLY hard ones, but getting less was worth it. I noticed that about 10% of the headaches i had been getting recently, were substantially low pain, I correlated them with having taken ritalin recently.

im hoping i am going into a state of remission now, the last headache was over a week ago and was extremely subtle.

If i dont go back into remission i will keep you updated on anymore findings, but from what I have seen ritalin really does reduce severity, by about 50%. I will definately be using it in the future.

Thanks Marc.
Whether you know it or not, you posts on this may help get Ritalin treatment over the line (for some) on the other side of the world.

Thanks again.

Cheers, Ben.