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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Ritalin & Other Stimulants
        
(Message started by: JDLouis on Jan 29^th, 2004, 5:10pm)

Title: Ritalin & Other Stimulants
Post by JDLouis on Jan 29^th, 2004, 5:10pm

I started out with CH at age 13, they started out as chronic, then over the years became episodic, with fewer attacks, but much longer duration. They devastated my academic and professional career for 12 years. Then one day, strictly by accident, I found out that there was a medication, not for headaches, that not only prevented them from happening, but they would take them away when they did come. I started to use the medication, and within a year or so, my life started to straighten out, and i was able to attend law school, with no fear of the attacks debilitating me, as they have never failed me, and gave me the confidence i needed to pursue a career.
My headaches are left sided only, and the pain centered around the left temple/eye region. I had tried many other medications, and none worked for me. I have found great success with Ritalin, and Adderal, both stimulants commonly used in the treatment of ADD. Phentermine, a slightly stronger stimulant, seems to work best for me, and is the cheapest ($15 for a bottle of 30). However, because phentermine can have some negative psychological side effects if abused, its probably best to try the ritalin or adderal first.
Someone I knew asked me how it is that the clusters stopped ruining my life, and I told him how this worked so well for me, and he knew a friend who had them on the right side of his head. His friend tried using my method, but it had no effect on him, so its possible this treatment only works for left sided attacks. Also, I have NO doubt that my particular attacks have something to do with seratonin levels and with my digestive system, as sometimes, an attack can be aborted by eating something real fast, if you eat it in time. Also, they can come more frequently if I dont eat regularly. I think its no coincidence that the medication that works for me is a stimulant, often used for weight control. Again, theres the digestive connection for me. If you believe your clusters have a connection to seratonin levels and/or digestive functions, I would bet anything that one of these pills a day can work for you as well as they have for me. However, care must be taken to use them safely, as long term stimulant use can be a problem in and of itself. It would be best just to use them at onset, since it will take away the pain within 15 minutes, completely. They have taken away hundreds of attacks over the last 13 years, and never failed me.
I would be interested to see if others have had similar success with these medications, which few doctors seem to be aware of, since I had at least one "specialist" insist i was lying.

Fell free to email me if you need more information regarding my experiences with these medications.

Title: Re: Ritalin & Other Stimulants
Post by Prense on Jan 29^th, 2004, 5:33pm

How long has this been working for you?

Thanks for sharing BTW...

Chris

Title: Re: Ritalin & Other Stimulants
Post by pubgirl on Jan 29^th, 2004, 5:49pm

Hello JDLouis

There's someone who keeps posting about Phentermine on the Guestbook. Wouldn't be you would it? [smiley=huh.gif]

Wendy

P.S. Clusterheads beware. Phentermine is predominantly an obesity management drug, with quite a lot of side effects and MUST NOT BE TAKEN WITH MEDS THAT TREAT BLOOD PRESSURE OR BY ANYONE WITH HIGH BLOOD PRESSURE. That means don't even consider it without talking to your doctor, especially if you are on Verapimil.

Title: Re: Ritalin & Other Stimulants
Post by eyes_afire on Jan 29^th, 2004, 7:06pm

Hi JDLouis,

It seems that you are not alone in your observation. Seriously, you may want to check the archives. There are alot of old posts about Ritalin. If memory serves me, some claimed to be helped by it. For me, I've never aborted or prevented a CH with Ritalin, but I believe it sometimes helps with shadows a bit. You'll probably have a hard time finding a doc willing to prescribe it because it is a schedule II controlled substance (along with amphetamines and cocaine).

--- Steve

Title: Re: Ritalin & Other Stimulants
Post by JDLouis on Jan 30^th, 2004, 3:44pm

Chris, this has worked for me since 1992, and has saved me big time this last week and a half as I have had a new series of attacks that I have not had in many years. While it has stopped all the attacks for me, I have to assume that, given the little interest I have seen by researchers in this, that maybe only a small percent of you have the same type of CH that I do. Mine definitely has a connection to seratonin levels and is very sensitive and dependent on me eating regularly.

Wendy, yes, thank you for telling of the warning, I had neglected to mention that if one takes the medication, it HAS to be monitored by a doctor because it can be abused, and dangerous to those with high blood pressure. I have been fortunate because I have had some good doctors who believed me when I told them this medication saved me from extreme hell. Also, since in the last few years, the number of attacks decreased, I only have about 30 attacks a year, so one bottle can last me an entire year, if used wisely. Getting one bottle a year of a shedule II controlled substance never caused concern by my doctors that I might be abusing them for reasons other than I had said. Now if I had daily attacks, and needed a bottle a month, this would be a red flag to them, that I might be using it inapropriately, even if I am not. And its with this long term, intense use that the negative side effects become a major factor. I wrote this so that if theres even one poor soul out there that would also benefit from the relief this has provided me, then I hope it can help.
I have seen the 2 phentermine posts, it looks like someone unscrupulous in the U.K. who is trying to peddle them here in the US, although the posts seem somewhat incoherrant. I dont know why he seems to think CH sufferrers would care about phentermine, since Ive never seen anyone but myself who seems to know about the benefit from these medications. However, I have seen in the medications survey on this website that Ritalin IS on the list of medications that the webmaster felt should be included in the preventative section of the survey. Ritalin is pharmacologically related to phentermine (even though phentermine is a diet drug, and ritalin is used for ADD, any pharmacist will tell you they are similar). Obviously, then I am not the first to find a link between ritalin (or related stimulants) and some CH attack relief. Since the link between ritalin and CH has been around for some time, I again have to think the percent of cluster sufferrers that would benefit from its use to be small compared to the CH population, because surely researchers would have established it by now. This is why I have said to look for a seratonin and gastronomical connection, since my attacks are definitely connected to them. I have had ADHD since I was a child, and I always resisted using ritalin, because it did not work well for me. Thats when other stimulants were tried, and I found that Adderall worked much better for me, AND had the fantastic side effect of stopping these deathaches intheir tracks--the ritalin didnt work nearly as well for me. I have ALWAYS been closely monitored by my doctors thruout all this, and I recommend it to anyone else who thinks they may want to try this course of action.

Title: Re: Ritalin & Other Stimulants
Post by JDLouis on Feb 2^nd, 2004, 10:44am

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 discomfiting. 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

Title: Re: Ritalin & Other Stimulants
Post by JDLouis on Feb 2^nd, 2004, 11:11am

http://neuro-www.mgh.harvard.edu/forum/ClusterHeadacheF/ofpatientstreated.html

....doctors ask for "double blind studies" is because Ritalin is a schedule II controlled substance. To protect their medical licenses, they wish to do everything else before writing for Ritalin. Ritalin has street value and that is too bad for cluster headache sufferers. A new treatment takes a long time to gain
acceptance, especially if it is a controlled drug like Ritalin. Neurontin, was easier to prescribe but it still took lecturing on the subject to convince doctors to try it for anything but epileptic seizures. I doubt that CIBA will start a lecture series for Ritalin. Interestingly, just today one patient informed me that the generic
Ritalin causes nausea and vomiting in her child and that the kids can tell if the methylphenidate (Ritalin) is generic or not! The reason Ritalin does not always work may be due to use of the generic or there may be more than one mechanism causing cluster headaches.

Dr. Gary A. Mellick

Title: Re: Ritalin & Other Stimulants
Post by eyes_afire on Feb 2^nd, 2004, 8:46pm

Quote:

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.

I just wish to clarify... I agree with you. When I read what I wrote, I can see where maybe I wasn't clear so I will attempt to clarify:

I have taken Ritalin (immediate release). I have taken this form at different doses t.i.d., although I have never taken it as an abortive for CH. I think it maybe helps me a bit with shadows (especially in the morning). I can't say with any certainty that Ritalin has ever prevented any CH, but it is possible that it did so without me knowing. Maybe it's why I don't get as many CH attacks as others... I just don't know. In my humble opinion, I think the FDA is a bit strict in it's scheduling, but maybe I'm just weird. Based on MY personal experience, it is beyond my comprehension how Ritalin is schedule II whereas Paxil is unscheduled. I have had no problem starting and stopping Ritalin at will (but Paxil was absolute hell).

Ritalin is rather inexpensive, and there are several reports of it being beneficial from the archives (if memory serves me). Therefore in my opinion, it is worth a try for clusterheads... as long as the clusterhead is aware of the abuse potential and is willing to be disciplined in its administration. My concern with it being schedule II is not personal apprehension on my part. Rather, I'll bet that many docs would be very close-minded to the idea of using Ritalin to treat CH due to it's schedule II status. I've even had pharmacists give me an evil eye when getting a Ritalin prescription filled.

Thanks for presenting this topic, it is interesting.

--- Steve

Title: Re: Ritalin & Other Stimulants
Post by JDLouis on Feb 5^th, 2004, 8:41pm

Dear Steve (eyes affire),

the material you qouted from my post was actually a side note from a qoute I posted by a Dr. I did not make it clear that it was a qoute, I am sorry. He was referring to someone else. The way it looks is that I was responding to you...lol

He is a doctor in Massachuesettes who was researching it, and I included the link in my second post. Also, I said earlier, i found much more success with Adderal than Ritalin. Same precautions apply, since they are both used for ADD, and are highly controlled.
I also think it has a better chance to work if youve noticed that the clusters come more often if you have an empty stomach, since there is a gastric connection, in my case at least.

Good Luck :)