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Topic: cluster within a cluster? (Read 444 times) |
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TJ6264
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cluster within a cluster?
« on: Sep 23rd, 2003, 12:39pm » |
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My husband is a CH sufferer. He goes through his cycles every labor day and they usually last for about two months. We discovered (thanks to this website) the Imitrix injections two years ago and they are a miracle!
This cluster started in June and started decreasing about three weeks ago but picked back up within the last two weeks. The headaches are coming every two hours and worse at night. His doctor is only allowing two shots every 24 hour period and (thanks again to this website) we learned how to make two shots out of one.
I have read the preventative medicine takes a couple of months to work. Is this true? I have been reading through the message board and see that Lithium seems to be a help to a lot of people, alone or combined?
Any feedback would be welcomed.
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floridian
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Re: cluster within a cluster?
« Reply #1 on: Sep 23rd, 2003, 6:53pm » |
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I would not be suprised if most preventatives require weeks or months of pretreatment to work. Many therapeutic psychotropic drugs are like this. We don't really understand how preventatives like lithium work, though we are learning more.
Related / Tangential Thoughts
By observation, we know that many standard anti-depressants may take several weeks to kick in. The "non-standard" (but well studied) herbal antidepressant Saint Johns Wort causes changes in the hypothalamus after 8 weeks, but no changes seen after 2 weeks. The one year of the past 6 I have been completely CH symptom free was in 2000, when I started taking SJW in January, and continued daily for the whole year. Maybe just a coincidence, but maybe not. SJW does improve function of the hypothalamus-pituitary-adrenal system. There have been several reports on this board of people taking SJW and not being helped. I am curious to know how long they took it, and at what dosages.
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maria9
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Re: cluster within a cluster?
« Reply #2 on: Sep 23rd, 2003, 8:14pm » |
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Hey Floridian, interesting to note here, after 22 years of yearly episodic clusters, some years medicated , most years not, I went to the Saturday clinic in the heat of the battle, got what ever doctor was on duty that day, turned out the doc was a cluster sufferer, told me to start taking Prozac, when I started to get the symptoms of clusters for the entire period of the expected cycle. That is what I have been doing for the last nine years in addition to being exposed to natural sunlight having turned into a fanatic golfer, and only one cluster cycle in the last nine years. Go figure is the light box, SSRI's and natural sunlight the answer to this? I know we are all different in our response to meds, but there has to be an answer to this.
Maria
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Prense
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Re: cluster within a cluster?
« Reply #3 on: Sep 23rd, 2003, 8:54pm » |
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on Sep 23rd, 2003, 12:39pm, TJ6264 wrote:I have read the preventative medicine takes a couple of months to work. Is this true? I have been reading through the message board and see that Lithium seems to be a help to a lot of people, alone or combined?
Any feedback would be welcomed. |
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Depends on the med...prednisone taper is typically used to get a grasp on the cycle while the slower acting preventatives build up to an effective level.
As far as Lithium goes...I am taking verapamil with little to no results and I am going to suggest to my neuro to add this med in conjunction with the verap. It seems to me that Lithium requires some consideration before taking it. There is monitoring of the blood for toxicity, someone posted that you are not supposed to sweat...blah blah blah the list goes on. I have never taken Lithium, but my suggestion would be to read up as much as you can about it before going that route. Then make an educated decision.
As far as the trex limitation...that is not coming from the doc, but I am glad to see that you are using the tip. ;D
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floridian
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Re: cluster within a cluster?
« Reply #4 on: Sep 24th, 2003, 7:07pm » |
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Maria,
glad to hear you've found something that works! What was the frequency of your cycles, and did they occur at a constant time of the year?? I use 5htp to boost the input of serotonin, but a SSRI would also increase serotonin by stopping it from being taken up. From what I have been reading, the MAOI seem to do a better job of dealing with a wide range of things including depression, anxiety, irritable bowel, etc. etc but they have a bad name due to side effects (especially the first generation).
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maria9
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Re: cluster within a cluster?
« Reply #5 on: Sep 24th, 2003, 8:45pm » |
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Hey Floridian, my cycles were once a year, usually 6-8 weeks, sometime between December and March. Except when I was pregnant, delivered in May both times, clusters then came in September. I did the usual cluster dance on the way to the right diagnosis. For 5 years the diagnosis was sinus headaches. After my GP diagnosed me with clusters, I was referred to a neurologist, where I went through all the standard prescriptions at the time - sansert. indocin,prednisone, verapamil as preventatives and dinosaur that I am only wigraine as a preventative. Eventually my neurolgist threw up his hands and said I have tried all I can. So I went the next bunch of years without any medications.
So I met up with a cluster sufferer doc who suggested 20 mg of Prozac ever other day, and that seems to work for me. This year when I started to get the symptoms or early warning signs i.e. waking up with a headache with right sided stuffy nose and pain behind right eye, I started to take it again, and continued to take it it until the symptoms went away. As an aside from this floridian, I believe that thereis a problem with our pain receptors modulators which the anti-dpressants can relieve. Maria
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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Bob_Johnson
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Re: cluster within a cluster?
« Reply #6 on: Sep 25th, 2003, 7:32am » |
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Go to www.headachedrugs.com and look for a section on meds used to abort & prevent clusters.
Also look for two books written by the doctor who runs this site--both are excellent.
Yes, it's not unusual to have to use combinations of meds for prevention. But this is why you need to find a doc who has real experience in treating headache. There is abundant evidence that most docs, even neurologists, don't know how to treat cluster. It's uncommon enough problem that many don't have either the experience or education to handle them.
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Bob Johnson
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cmoore
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Re: cluster within a cluster?
« Reply #7 on: Sep 29th, 2003, 1:16pm » |
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Shrooms worked for me and everyone else that I have ever heard of using shrooms has done nothing but praise them for having "saved their life." I know that there are many many perscription drugs and many herbal supplements, and CH sufferors, like myself, mix and match and screw around with all of them to try to get their life back to normal. This is all one huge pain in the ass that in my eyes is not necessary at all. This is just my opinion, but my god - Shrooms all the way! no long term repercussions, virtually no trip for me, and most importantly CH free for 4 months now.
I truely belieive that God put shrooms on this planet for CH sufferors. I feel so strongly about this topic that I will go as fas as saying that these shrooms were put here as some sort of divine intervention. CH were ruining my life, and I was saved and am so greatful. Check out ALL the info on schrooms before you get too deep into a game of "perscription twister."
sorry about the rant, just need to do it sometimes!
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