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Topic: Hello, part I. (Read 417 times) |
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Artie
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Hello, part I.
« on: Aug 30th, 2003, 10:42am » |
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Hello,
My husband has had cluster headaches for 8 years. Left untreated, he has 1-6 headaches a day. I wanted to share some of his/our experiences. I have found a lot of really helpful info on this site and hope to provide some to others. Currently he is on verapamil (960 mg total. 480 mg taken 2x/day. It is the SA form) and depakote (1.5 grams total. 750 mg taken 2x/day) as prophylactic. In general this keeps him headache free, although he still gets shadows (pre-headache changes) many evenings. Two to three times a year (generally spring and fall) he starts getting full blown headaches again and he does a prednisone taper (80-60-40-20-10 mg/3 days each). I think he is developing some resistance to the prednisone because recently the tapers have had to be extended in order to work. For emergency treatment he injects with imitrex. He has also tried imitrex as pills and as an inhaler (20 mg), but feels the injector is by far the best. The best feature seems to be the speed that it works and that he can inject well into an attack and it still works. He has also taken amerge (Naratriptan) with some success. He really hates the side effects (tightness in the chest and throat), but it is the lesser of two evils at this point. It came as a 2.5 mg pill, but he breaks it in half and takes 1.25 mg. If he takes this an hour or so before he anticipates a headache will start, that is sufficient to keep the headache from happening for about 12 hours. If he takes the amerge once an attack starts, it is no help.
The headaches started when he was 39. They occur behind his left eye. At the same time the headaches started, the left side of his scalp became hypersensitive. He describes it as a very strong tingling. I think its called occipital lobe neuralgia, but I am not sure….. I am curious if others with CH have this? Anyhow, when the headaches started he smoked a pack or so a day and drank some, but not lots. Once he was diagnosed with CH he quit drinking. That helped for a while, but the headaches came back. After a year of CH he quit smoking. The headaches became manageable again with medication. Then they came back. As you can see from the high doses of verapamil and depakote he is on, his neurologist’s strategy has been to increase the dose of the two drugs that have been most effective. When those stop working he does a round of prednisone and the verapamil/depakote combination becomes effective again. He has blood work done 1-2 twice a year to monitor for possible liver toxicity from the depakote. So far, it is OK.
I hope there is info here that is helpful to others. I am posting Part II of this with additional stuff he/we have tried. Anyone who has questions, PLEASE let me know. Also, if anyone has suggestions for my husband, we would love to hear them. This is by far the best source of information about CH we have found. THANK YOU!!!!!
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Artie
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Re: Hello, part I.
« Reply #1 on: Aug 30th, 2003, 10:48am » |
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Here is Part II to our post! Some treatments strategies he has tried or is investigating are as follows.
He tried oxygen for awhile. It worked well, but then stopped being effective. However, he was using the nasal tubes and I now see from the info on this site, that using a mask is more effective. Thank you!!!
Other drugs he has tried have been elivil (stopped due to side effect of feeling in a "fog" and topomax (stopped because he got severe double vision at 25 mg!). In addition to the drugs I described, he also tried acupuncture for a year. It seemed to have helped reduce the severity and frequency of the headaches, but only in combination with the drugs I described. It did however help him deal with the prospect of pain on a daily basis. He will likely try a different acupuncture practitioner at some point in the future. For better or for worse, results with acupuncture vary dramatically depending on the combination of practitioner and patient.
The high dose of verapamil (960 mg) he takes has caused chronic swelling in his lower calf, ankles and feet. He is beginning to develop blood clots and cellulitis in this region and the neurologist is concerned the chronic swelling is a major contributing factor. Fortunately the clots have all been in superficial vessels so far. However, we are all concerned/terrified he will begin to develop clots in deeper vessels, which needless to say is life threatening. His neurologist is trying to find another drug to combine with depakote. As I mentioned above, he tried topomax, but he had very dramatic side effects at such low doses, so he stopped.
We are looking into adding melatonin to his daily regiment of drugs. Our hope would be that we could add something to his meds that would enable him to reduce how much verapamil he takes. Since OTC preps of these types of things vary tremendously, I emailed several authors of papers in the scientific literature about what brands they used for their studies or how else they would recommend getting “pharmaceutical grade” melatonin. We were told to just try several brands OTC and keep using anything that works. I guess they worry if they recommend a brand and there is a problem we will sue them. One Dr of Naturopathy told us that he has access to "pharmaceutical grade" melatonin. None of the pharmacists I called have heard of such a thing. It seems pretty clear we will have to see this Naturopathy practitioner to learn more about his source.
Another avenue we are investigating is whether there is a relationship of these CHs to his snoring. There are some reports in the literature about sleep apnea and CH. The neurologist gave my husband a "prescription" to have a sleep study done to see if he is oxygen deprived or just noisy. We don’t hold much hope for this, but its an avenue to be checked out at least.
I think that covers the avenues we have pursued to date. Please contact me if you have questions or suggestions.
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firebrix
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Re: Hello, part I.
« Reply #2 on: Aug 30th, 2003, 5:11pm » |
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Welcome Artie!
Sorry you had to find this site, but glad you did. You sound like a great supporter of your husband.
I'm a supporter too, and just wanted to say that someone will answer your posts soon. Many here will be able to discuss this with you better than I, but be assured you are not alone. Check out the site - it took me months to read everything - and be as informed as you can get!
If you wish to talk to another supporter, my email's on the site and I'm happy to help in any way I can.
Please let us know the results of that sleep study.
Wishing you and your husband PFDANs
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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Giovanni
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Re: Hello, part I.
« Reply #3 on: Aug 30th, 2003, 6:45pm » |
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I believe that melatonin taken @9mg with B-6 one hour before planned bedtime might be benefiticial. This is available from GNC and is inexpensive (the B-6 is included in the pill). They come in a 3mg pill. I think it shortened my last cycle by one month over the previous year. The relief came the first night I used it. I posted my results and many people said it did help them to marginally helped. Anyway, I believe it's worth a try. Might work for him as it did for me. BTW--I'm not a melatonin salesman. 
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