A ClusterHead's Life

This is what happened to me over 3 years ago. How all the pain began. This was written before a definate diagnosis and was based a lot on what was told to me.

In November of 2001 I had the unfortunate experience of being poisoned by ethanol glycol, an active ingredient in anti-freeze, while working on my car. Within a couple of hours I could hardly walk and past out shortly thereafter for a day and half. I woke up with a pounding throbbing headache that could be only minimized by standing or sitting straight up. Thankfully my roommate was there and dragged me to the hospital. I didn’t want to go because the pain was causing me to vomit with the slightest movement. I was admitted quickly and had several IV in me before I knew what was happening. Artery gases were taken to find out that my ph balance was 7. Very acidic. Also my blood pressure and heart rate were around a ‘working rate’. Believe my heart rate was a consistent 130-140 if memory serves me correctly. They pumped me full of bi-carbonates, vitamins, saline solution. Plus a few other things I can’t really remember. I was incredibly lucky my kidneys didn’t shut down. I was in hospital for 7 days. On the whole I still had this headache was unable to sleep.

After a week of getting out I saw my family dr. I told about the headaches and the sleep problems. I told him that really felt like migraines (I have a history of migraines since the onset of puberty but it was about 2 a year and Imitrex or sleep relieved them every time) He checked my blood pressure which still sky high. He sent me on my way with a whole bunch of sample of the triptans. Amerge, Imitrex (shot, tab and nose spray), Maltrox and Zomig. I used them all as directed. Sometimes a missed the ‘point of no return’ but I usually took as soon I saw ‘the spots’ before my eyes. I found Amerge to be the best. I did find the Imitrex shot only increased the pain. Also he gave a prescription for propranolol (Inderal). Right away I notice a change in intensity.

A disturbing trend started which I still have it till this day. I would take a triptan and the migraine would subside but literal within a couple of hours a migraine come and another and another and so. Nothing could break the cycle. Propranolol was then increased with help with the painful throbbing but not the frequency. He ordered an ECG which came back negative for seizures.

Back to the Doctor. Because of my past history of migraines and ongoing slaughter from latest episode he prescribed Elival. I was a little hesitant but he assured me that low doses have show decent results with chronic migraines. At this point I still wasn’t sleeping very long, if at all. I think he gave me an Ambien but I’m not 100%.

A month past and still hadn’t notice the any changes from the Elival and the triptans were becoming little use to me as I would end up getting the side effects from the drugs along with recover pain, plus the aura of the next migraine. We raised the propranolol-LA to 80mg twice a day. I am most thankful for that drug. I told him of a new pain I was experiencing on top of the migraines. It’s like a hot poker being jabbed into my eye and left there. They only last 15min to maybe 3 hour but they come in wave plus they trigger migraines. I now know I have cluster headaches as well. My dr. wasn’t too sure what to do at this point. We tried Migranal without much success. He wasn’t much help after that point. I still wasn’t sleeping even though.

I was deteriorating fast. The pain would not relent. I couldn’t sleep. I was vomiting several times a day and my dr. was perfectly happy to sit on the sideline and not get involved. After several months of no sleep and in pain that no one should ever have to endure I drove myself to hospital (one where my gp did not have privileges. He was officially fired). The hospital admitted me right away but because of exhausted and wanted to escape the pain its most extreme form. I was suicidal at this point. The hospital was great. They changed my meds to zopiclone for sleep (work like a charm), Remeron for the depression as well as the migraine. As well a getting a CT scan. Thankfully it turned up no problem.

My new dr. added Neurontin to my medication list. That has help remarkably with the pain that associated to light, sound and touch. It’s not all gone by any means but it’s a little more manageable. Following that he enrolled me in a pain clinic. I didn’t find much relief much from the therapy. The lidocaine injections never seemed to help much. Because of that I’m not a candidate for Botox. Biofeedback helped me take my mind off the migraines. Also he got me 2 neuro appointments but they aren’t till April ’03. He’s finally trying to make me comfortable with regards to pain killers. I was taking nothing for the last year of hell. Once in awhile I made the odd trip to the emergency. But it took an amazing amount of pain and convincing for me to go. The codeine contin has taken away the pain from the before and after migraines. At least I get some relief; they take the edge of the migraine and do nothing for the cluster. I understand the idea of rebound and my dr. figure I get intense pain every day I may as well be comfortable. I have made a list of triggers, changes in weather being the worst and bring on the intense migraines. Nothing I can do till the weather settles. I’ve drastically changed my diet since the accident.

*that is where I left off. Not too sure why but that is where it ends & I don't want to change it. I will add to it on a separate post. Some of it may not make sense. Looks like I wrote it either just prior to an attack or just after.

Paul

Finish each day and be done with it. You have done what you could; some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.
-Ralph Waldo Emerson