Posted by JSW on May 03, 1998 at 23:28:43:
In Reply to: Help!!! Husband is going crazy with clusters!!!!!!!! posted by Eva on May 03, 1998 at 21:40:19:
I have had chronic clusters for over three years. I just started to monitor this board today. There seems to be some good info here. I have tried everything that typical cluster sufferers are prescribed.
My first impression concerning your posting is about your husband's doctor. You or your husband need a second doctor's opinion. (Note: I am not a doctor) Cluster sufferers are prescribed everything because doctors are guessing and the pain is so severe but I cannot recall any instances where an actual sufferer has reported Valium as treatment. I did check a layman's medical reference and indeed Valium is prescribed intravenously. However Valium is habit-forming so it would seem that this would only be helpful for an episodic (vs. chronic) sufferer. (It also seems to me that the "typical" layman medical info treats all cluster sufferers as episodic. Are your husbands cluster problems episodic or chronic? This would seem to be a major factor in treatment choice.)
But most telling is your husband's consumption of tea and smoking. As you stated tea has caffeine and smoking is nicotine delivery process. Both of these drugs affect vascular function. I know caffeine is a vascular constrictor (blood vessels are made smaller) and so is nicotine. Clusters are characterized by vascular dilation (blood vessels get larger). To consume these drugs in the quantities your husband is consuming would seem to be playing with fire. Especially when you consider many cluster sufferers (me included) are sensitive to smoke and smoke is often a headache trigger for us. I cannot believe your husband's doctor would deem his consumption of caffeine and nicotine as insignificant … unless your husband is lying to you. Is your husband normally violent or do you expect his self-prescribed and physician prescribed drug cocktail (and lest we forget his cluster pain) the culprit. I could tell you many personal horror stories about the drug side effects from many of the drugs prescribed for clusters. I will tell you one. I was initially prescribed sansert. I would describe its initial side effects as a nervous breakdown. (It is very similar in chemical structure to LSD, a drug I used recreationally in the past. At no time did LSD ever, ever, negatively effect me like sansert.)
I have stopped trying preventative medication because is has been completely ineffectual and the side effects were especially troubling because the drugs did not stop my headaches. My treatment has evolved to intervening treatment. When I get a headache I use cafergot (orally) and imitrex injections (tablets, while effective for some did nothing for me). When the frequency becomes oppressive, I take predisone (immune-suppressing steroid with all kinds of shitty side effect if its use is frequent or pro-longed). After reading this board, I will be talking to my neurologist tomorrow morning about the anti-fungal Diflucan and Lamisil. This information seems to be the most promising information to date concerning cluster treatment. Otherwise, I can tell you from experience that treatment is a long, arduous, and painful crapshoot. Don't expect your husband to pursue his best options. Pain and drugs cloud judgement and motivation. My partner has been supportive and persistent when I have run out of effort and patience. She is the reason I will seek these new options tomorrow. Keep in mind that physicians will struggle with treatment options. Some struggle worse than others. I had to switch neurologist because the first (a very respected neurologist) just could not understand sansert would not work. (He even failed to distinguish between episodic and chronic cluster headaches. Sansert is toxic and can only be taken for a short period before its use must be stopped for a period and then started again … over and over. This consumption cycle, the toxicity, combined with the terrible side effects I experienced when first taking the drug made it a foolish and painful non-treatment. Seek a second opinion from an open-minded, responsive, and empathetic physician. (Make sure you do not forget to use your own judgment in conjunction with the physician's) In the end, the quality of the treatment will be indicated by options that are most helpful and least disruptive. Good Luck!
JSW