Hello everyone,

My name is Isaiah, I am 31 years old and I was finally diagnosed with Cluster Headaches in April 2009 after about three years of suffering from terrible "migraines" which left me incapacitated in terrible pain and which took away my desire to work, to read... Everything!  I visited several general practitioners here in Montréal and they told me I didn't really suffer from migraines because I only got them every few months (my cycles!). They were right, but I wish they would have been able to tell me what I DID have!  Instead, I ended up taking a lot of Ibuprofen, up to 1200mg at a time, for nothing. I finally met a fellow-sufferer through a colleague who told me that his friend's symptoms sounded very much like mine. This friend of a friend referred me to a clinic for migraine and headache research here in Montréal!  What luck that this exists!  I had my first appointment in April and was prescribed 480mg of Pro Verapamil per day. I also received zolmitriptan 5mg nasal sprays and Imitrex sumatriptan 12mg injections.

My cluster headaches come at odd times and not necessarily on a fixed schedule. I get them at terrible, depressing times: 2:30am, 5:15am... Since I work mostly late hours, I often go to sleep around 1am, making a 2:30am attack a living hell. My attacks could last from 20 minutes to 45 minutes, rarely longer. They are relatively short, but excruciatingly painful.  My poor wife has many a times sat helpless while I roll on the couch, on the floor or pace the hallway at 5am wishing I could crush my own skull. A Cluster Headache attack literally steals my ability to enjoy life at any level.  It's like nothing matters but the maddening pain.

That being said, my initial experiences with Verapamil have been very helpful!  At the onset of my last crisis in May, I began taking the pills and was able to completely stop my clusters for the entire six-week cycle. Well, there was one time when it did not work, but I was able to block the headache with a nasal spray.  Obviously I am very thankful to have found this clinic in Montréal!

I feel very lucky that the Verapamil works so well (at least for the time being).  I have one small question about that, however. When I stop taking the pills I have a return of shadow CH-type headaches and (rare) extremely brief non-CH headaches lasting maybe a second or two, like an electric shock through my entire head.  Last night I had a headache that resembled a caffeine-headache, for those who have missed a coffee, I hope you know what I mean. During the Verapamil treatment, I am perfectly fine. This only seems to start at the end of the treatment. I ended my first treatment in June after having started in May, but I started the pills again a week or so later because of these symptoms described above. I assumed, after discussion with my doctor at the headache clinic, that I had just quit the treatment too soon. However, I quit the pills again just over a week ago and I'm having the same symptoms. Now, I have not been off the pills for more than two weeks since May because my doctor and I assumed that the attack had not finished yet.  I have now been off the pills just over a week. Has anyone else ever felt this after taking Verapamil through a cycle?  I have an appointment with my doctor in September to go over these first few months of treatment, so I will definitely bring up these issues with him.

Anyway, I am overjoyed that my doctor told me about this forum and I look forward to hearing from, and sharing with, fellow CH sufferers. It is strange how comforting it is just to know that we are not alone in this pain!  Thank you for being here.

Isaiah

Thank you for your welcome! I will definitely be following the links in the next couple of days.

Best,
Isaiah

Hi

Welcome.
To answer your question about verapamil, I have been on it since Feb 2009 and plan to stay on it indefinately as a preventative. I asked my MD about this and he said that it was not contraindicated.
I too have had shadows when I stopped, so I figured, why stop? The only real side effect is constipation, but it's well worth it if it prevents CHs.
Something to talk to your MD about anyways.

kika wrote on Sep 15^th, 2009 at 11:51pm:


Thanks Kika, I'm wondering if this will be my fate, also. I saw my doctor in September and I explained the whole situation and he seemed genuinely concerned that I was perhaps "going chronic". I really hope this is not the case. To be honest, it doesn't seem likely that I would start to have chronic CH at the same time that I starting taking Verapamil...