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Title: another newbie with some questions Post by sioux-z on Oct 26th, 2004, 11:12am I'm a 28 year old woman. My first CH was December 31, 1999. What a way to start the new millenium! Luckily I was diagnosed within a few months and was treated with Prednisone and Verapamil, which were pretty effective in stopping the CH's. My episode lasted about 6 months. I didn't know much about these evil things and after the episode passed I tried to forget all about them. My Neuro told me I might never have them again. But now four years later they are back with a vengence. The Prednisone and Verapamil don't seem to do anything at all. I have been surviving by using the Imitrex injections but not without significant stress and fighting with my insurance company. I have spent several nights in the ER and had been becoming really depressed. I have always considered myself to be a pretty strong person but these things have really broken me down. I recently graduated from law school and have started a new job that I am really happy with. I'm so afraid that this is going to interfere with my work. The last couple of years have been tough and I was finally feeling like things were good and then this awful thing comes back. As you can see I am really feeling sorry for myself. Finding this site was good for me- I see that others are going through this too and they are working and raising families and somehow keeping their chins up. It's been hard this past month, as a control freak, to feel so helpless and to go to doctors that don't know anything- I live in a different state now and I just finally got a referral for a Neuro appointment next week. It's also great to hear from such a diverse group of people- I'm so sick of hearing that women don't get CH's and I must be some kind of freak of nature. In the last few weeks I have read a lot about CH and have learned a great deal but I do have a few questions some of you may be able to answer: 1.) Did anyone else go 4 years between their first and second episode? If so, did the time between episodes stay that long or did it get shorter with the next episodes?- (PLEASE SAY IT STAYED LONG!!) 2.) I tried Depakote (valproic acid) for the first time last night and woke up with a CH about two hours after I went to bed. When I gave myself the Imitrex injection it was like the first time I ever used it- the side effects were really strong and lasted much longer than they ususally do. Has anyone ever experienced this? Maybe I can use less? I have been considering the Imitrex tip. Anyone who has used Depakote- how long did it take to have an effect if it worked? Thanks everyone! |
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Title: Re: another newbie with some questions Post by BobG on Oct 26th, 2004, 11:55am Quote:
I hate to be the one to tell you this but, your neuro is nuts. The bad news first, if you do have true cluster headaches they will be back. The good news is they will probably go away in about 30 years. Quote:
Somehow? We have to. There is no other choice. Quote:
Possibly your dose of verapimil was too low. You may need to ramp up to a higher (sometimes much higher) amount. Some folks are up at the 700-900mg levels daily. Don’t ramp up on your own. Talk to your doctor first. About your question 1. Everyone is different. Some go 1 to 4 years between clusters while other will get cycles 2 or 3 times each year. About question 2. The imitrex tip will save you money (3 shots for the price of 1). Many folks have found that a 2 or 3 mg dose will work just as well as a full 6 and it is much easier on the heart. Quote:
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Title: Re: another newbie with some questions Post by pubgirl on Oct 26th, 2004, 12:00pm Hi there It may be worth looking at the Verapimil again if it isn't working. It is quite common for it to be too low a dose and given in the wrong form. It is also quite common that the dose has to be increased as some tolerance of it can happen. It should be commenced at 240mgs, taken in 80mg NORMAL release tablet form (NOT SR or MR, sustained or modified release) at regular intervals throughout the day to keep the levels constant. The dosage should then be increased every two weeks until prevention is achieved to a normal limit of 960 mgs (although I know quite a few people on more than this with no ill effects) An ECG should be carried out at each dosage increase. Hope this helps Wendy |
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Title: Re: another newbie with some questions Post by sioux-z on Oct 26th, 2004, 12:08pm For the past month I have only been taking 80mg 2 x per day of the Verapamil. I'll talk to my doctor and hopefully increasing the dose will help. Thanks for the tips! Sioux-z |
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Title: Re: another newbie with some questions Post by Valerie on Oct 26th, 2004, 12:16pm Welcome! I took 80mg of verapamil 2x/day and it didn't really work, as soon as I upped it to 3x/day it helped. My cycles are now 2 years apart, they used by 2 times a year. Everyone is different, I've been getting them for 24 years. Hopefully you'll have a lot of pf time, but always be prepared for them to come back, they usually do. Congrats on finishing law school and starting a new job. I've been hit several times after starting a new job, it really does suck. With the right prevents and abortives, you can probably manage to get thru it. I've been in this cylce for 8 weeks and haven't missed any work yet. Good luck, Valerie |
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Title: Re: another newbie with some questions Post by Bob_Johnson on Oct 26th, 2004, 4:46pm BobG is grumpy sometimes--but worth listening to! <bg> Ask your doc for a trial of this one: 1: Headache 2001 Sep;41(8):813-6 Olanzapine as an Abortive Agent for Cluster Headache. Rozen TD. Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa. OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache. -------------------------------------------------------------------------------- Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ. ======= Strongly suggest you get the first title. You're the kind of person who can use this information. MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended. |
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Title: Re: another newbie with some questions Post by Charlie on Oct 26th, 2004, 10:38pm Welcome and if you look around, you'll find lots of good ideas for dealing with this horror. Since you are worried about your job, here is a link to a description and letter that does a wonderful job describing this to others and that it has nothing to do with what others think of when the hear: "headache." You might want scroll down a bit but I suggest you print it for your employers and friends. http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/note_colleagues.cfm&added=04/01/04&code=CB Here is the technique that I used very successfully: Dr. Wright’s Circulatory Technique What follows is a technique learned from a neurologist: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck Charlie |
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Title: Re: another newbie with some questions Post by Giovanni on Oct 27th, 2004, 8:55am First, congratulations on your law school graduation. Cluster headaches are a lifetime incurable syndrome. Some people report that they diminish or disappear as age increases, but they still kick my ass at age 57. If your cycles are at 4 years, you’re one of the lucky ones as many people have multiple cycles each year. Still others never have a break with these bastards and actually have cycles within a cycle. In 2002 my cycle lasted from March until about July 15th; in 2003 lasted from March until June 15th. I had gone pf because of the mushroom therapy from June 15, 2003 until July 13, 2004. I started a July cycle until now about 70% diminished pain levels because of the mushrooms. The mushrooms are not perfect, but for me has been my best relief so far. You inquired about cycles changing over time. The answer is yes they can. They can become more frequent, less frequent, and the start time can change over time. The best thing you can do it to find a knowledgeable doctor (neurologist) who specializes in “headaches”. Also, a Harvard study that will begin in the near future will be our best hope for treatment. Good luck to you, John |
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Title: Re: another newbie with some questions Post by Kris_in_SJ on Oct 27th, 2004, 7:59pm Hi - and Welcome, Sorry you have to be here. You've been given some good advice so far. My only difference of opinion would be with regard to Verapamil and Verapamil ER (extended release). I take the ER with good results. The board is pretty split on this one. What I can tell you is that I've never achieved relief with under 480mg/day. I also am a person who goes several years between cycles. My first was 9 years ago at the age of 41. It was 5 years til the next and then 4 years to the one that ended this summer. Like you, I sure hope it stays this way. I can't speak to Depakote - never tried it. What I have noticed though, is that when the side effects of Trex start being worse than the CH itself, it usually means I am on a downswing and maybe I should try riding the next one out. That's just me, though - may not apply here. Please hang in there! There isn't one of us who doesn't know that feeling of depression that comes on during a cycle. All we episodics can do is take comfort in the fact that it will end at some point. Meanwhile, keep reading, keep posting, and keep us informed. Many hugs and good vibes, Kris |
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