Posted by Matt Bondaruk on April 09, 1999 at 17:43:35:
I am a 49-year old male caucasian who has suffered from cluster headaches from the age of 19! Yes, that means I have been plagued by the hideous illness. My clusters are episodic in nature lasting 8 to 12 weeks with a 12 to 15 month gap between clusters. At the outset of a cluster, I will get a single attack, go 1 or 2 days before a second attack. As the cycle progresses, the attacks become more frequent and severe. At the peak of the cycle, I get 4 to 6 attacks a day lasting an average of 90 minutes (unmedicated). The ONLY relief I get is taking 100mg of Demerol with 50mg of Gravol. If given by injection, I get relief in about 7 minutes (pain is bearable); if given PO (by mouth), it takes approximately 22 minutes before I get relief.
The Cluster Attack that usually lasts 8 to 12 weeks tends to "wind down". The frequency and severity become less and less. Voila ... they're gone!!
The Attack
For me, I get an aura before the pain starts. The aura is generally a thick feeling radiating from from left temple toward the back of my head (left mastoid). As the attack intensifies, I get a moderate pain that seems to initiate at the left temple and radiate down across my top teeth. The pain intensifies to the most excruciating stabbing pain behind my left eye. This pain is unbelievable!! After I take the analgesic medication mentioned above, the stabbing pain becomes more of a throbbing (pulsating pain) that I can tolerate. This throbbing sensation will last hours or dissipate. On occasions, it has returned to become that excruciating pain behind the left eye (60 - 90 minutes later). This only occurs at the peak of my clusters. Other physical manifestations of the attack include: redness and tearing of the left eye, although my left nostril is completely plugged, it still runs; I feel nauseated but seldom vomit; my forehead becomes clammy; the attack becomes more excruciating by movement, touching of the left side of my head, the application of hot or cold. I cannot lie down because the pressure of my head on any surface aggrevates the pain and I can't stay upright because I feel so nauseated! I sometimes get a very strange sensation that I can only describe as a "shivering in my brain" that is similar to the sensation one might experience just before blacking out. However, I have never blacked out (although, it might be a relief to do so).
Medication and Treatments
Over 30 years, there HAS BEEN N-O-T-H-I-N-G that I haven't tried. I have not responded to any prophelatic medications. Whatever I was taking at the end of my last cycle, I started immediately at the start of the next cycle. Nothing has worked. I have been the ergotimine route (caphergot, sansert, DHO); I have been the "Triptine" route (Sumatriptin, Zomig, Immitrix (PO and nasal spray); I have taken Calcium Channel Blockers, Beta Blockers, anti-epileptic medications (Dilatin in earlier cluster years and most recently Neurontin). I have taken prednisone (a horrible drug), verapamil, valproic acid, inderol, lithium bicarbonate and others that I do not remember the name of. I have used 4% lidocaine nasal drops, have had cocaine swabs crammed way up in my sinuses, have tried oxygen, various IV drips, biofeedback, hypnotherapy, chiropractic treatments, shiatsu, heeling hands, temporary freezings of the various branches of the 5th trigeminal never (occiptal and troclear nerves), TNS (transcutaneous nerve stimulation) and the list goes on. At one point, I had experimental surgery which exposed the temporal artery and had it frozen and thawed, frozen and thawed, frozen and thawed to try and kill the smooth muscle associated with the artery.
Thirty years and I'm still looking for SOMETHING to treat CLUSTER HEADACHES.
During the first year of my clusters, I went into the hospital for some neurological tests to rule out a tumor, blood clot, etc. After the results were in, the Neurologist said to me, "Young man, you'll just have to go home and learn to live with your headaches!" I thought that was the cruelest thing anyone could say but 30 years later I have come to realize that those were the truest words that anyone has ever said to me about this illness.
CONCLUSION
I am very interested in this illness. I try to read all the research on the subject, try anything new and would appreciate corresponding with anyone on planet earth that has any insights or has any questions.
Please feel free to contact me.