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Topic: ADVICE NEEDED! What drugs? PLEASE HELP!!!!! (Read 701 times) |
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michellemehmet
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ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« on: Feb 27th, 2006, 7:52am » |
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Hi everyone my name is Michelle and I really need some advice.
Here is my story. Hit with first cycle Oct 2002. Thought I was dying. Brillian doc would not accept it was migraine sent me to A and E got every test under the sun MRI, CAT, LUMBER, and all the others.
LUCKILY a doc doing a study on CH saw me and I was diagnosed during first cycle. Cycle lasted 4 weeks. Second hit 20 months later. Took pizotifen to no affect. Was terrible had just given birth and had 5 week old baby.  Ambulence called on many occassions and 3 weeks into cycle was given steroids by neurologist. Stopped cycle dead there and then.  . Does this normally happen?
17 months later another hits (I THINK  !) and I have 2 minor (level 4/5) attacks. Straight on steroids and 120mg of varapamil. Also indothmetacin and sumatriptan injections to abort attacks. No attacks folowed and I thought I had found my cure. Every 20 or so months have an attack, get on the meds and no attacks follow and have peace for another year and half. However 3 months later (last sunday) I was hit again with an attack (what i think is cycle 4) and I went into shock. 
Does this mean that it is now every 3 months or could my last cycle (cycle 3) have been a phantom cycle? However if cycle 3 was not a real cycle then this cycle is really cycle 3 then the time I spent in remission was again 20 months. What do you think? I have either had 3 cycles with 2 20 month gaps or four cycles with 2 20 month gaps a 17 month gap and a 3 month gap
Is it normal to only go 3 months? as soon as I get on the varapamil and steroids it breaks the cycle and I dont have anymore attacks. Am i just lucky? My doctor does not know how long to keep me on varapamil and thinks that I may ned to stay on it for life? What are the implications of this? I really need advice on varapamil if you can help or have any info on the subject.
Am i lucky to have a doctor willing to precribe steroids, varapamil, sumatriptan, indothmetacin and O2 or are all doctors getting better? Mine is really undersatning but is unsure how long to keep me on the meds.
PLEASE let me know what you think as I feel very alone and noone understands.
Thank you fellow sufferers
Thinking of you all
Love
Michelle
x x x x x x
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Bob_Johnson
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #1 on: Feb 27th, 2006, 8:32am » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Your experience is common: steriods block the cycle rapidly but, at the same time, a preventive med (Verap, etc.) should be started because it takes some time before it becomes effective and dose adjustments are often needed.
Cycles vary in length and don't come regularly for many of us--and your pattern can change over time, too. Just don't try and predict them; creates too much anxiety to always be "watching" for the next hit.
Indo. isn't effective for clusters; works for one rare sub-type. Stay on the Verap for several weeks after your last attack and then taper off. (Your present dose is likely too low. The article cited is from one of the better headache docs in the U.S. and gives current thinking on treatments.)
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Bob Johnson
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FramCire
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #2 on: Feb 27th, 2006, 9:20am » |
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First off, it is awesome you have found something that kicks your cycles. That is a great thing. I hope it always works for you.
Second, I will check with my medical advisor on Verap as an everyday at 120mg and get back to you.
Third, you are LUCKY to have found a doctor in the know in your first cycle.
Lastly, I think we have all learned that nothing is "normal" and nothing is "abnormal" with CH. Enjoy your PF days and relax. If you can kick a cycle with relative ease that's awesome. We are all glad to have you here and hopefully having people who understand and care will help you as it has helped me and keep asking questions.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Karla
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #3 on: Feb 27th, 2006, 11:51am » |
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predisone tapers are a common steriod to use in fight against ch. It usually does stop it dead in its tracks. indomethacin(indocin) is only effective against cph ha not ch. So to take it is worthless unless you also have cph. That is a very low dose and might not be effective of verapamil(calan). You can take up to 960mg/day. Lithium is also popular used with verapamil or alone. 900mg /day of lithium. Topamax up to 900mg has helped some. Good luck in finding something that works.
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Karla
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FramCire
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #4 on: Feb 27th, 2006, 1:33pm » |
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For those who don't know (like me).... what is cph?
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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thebbz
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #5 on: Feb 27th, 2006, 8:44pm » |
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Hey there,
You are not alone. Clusters are very unpredictable. You are not going to let it get to you. The previous posts are all very good. I think the verap is a bit low, must be initial dose. Try not to let it get to you as it tends to set the demon loose. Start a diary of your headaches. It is not uncommon to have an abort or prevent work on one episode and then become uneffective.
You are not alone.
jb
Study you condition....knowledge is power.
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floridian
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #6 on: Feb 27th, 2006, 10:27pm » |
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on Feb 27th, 2006, 1:33pm, FramCire wrote:| For those who don't know (like me).... what is cph? |
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CPH = chronic paroxysmal hemicrania, a one-sided headache that is similar to cluster headache, and the two are often confused. As a general rule, cph attacks are shorter and more frequent, but this is not always true. Some docs will put people on indomethacin first because if it is cph, indomethacin usually brings it under control. If not, clusters are suspected.
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FramCire
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #7 on: Feb 27th, 2006, 11:22pm » |
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Thank you very much.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Dragnlance
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #8 on: Feb 28th, 2006, 10:18am » |
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Welcome home Michelle
Your experience is common. I want to stress that you ARE NO LONGER ALONE!!
You have found a family who cares and understands. We are here for everyone who needs help and understanding.
Like I said before, welcome home
Lance
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Richr8
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Re: ADVICE NEEDED! What drugs? PLEASE HELP!!!!!
« Reply #9 on: Feb 28th, 2006, 10:55am » |
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[/u][/s][s][u]on Feb 27th, 2006, 7:52am, michellemehmet wrote: given steroids by neurologist. Stopped cycle dead there and then. . Does this normally happen? 60 mg of prednisone works for me every time.
Straight on steroids and 120mg of varapamil. 60 mg of Prednisone, 480 mg of Verap and I also use Oxygen as a primary abortive and However 3 months later (last sunday) I was hit again with an attack (what i think is cycle 4) and I went into shock.
Mine are seasonal and ususally begin in the Fall. Last summer I had my first rogue event and have read here that cosnistnecy is generally not the rule.
Does this mean that it is now every 3 months or could my last cycle (cycle 3) have been a phantom cycle?
Very possible, but impossible to predict. However if cycle 3 was not a real cycle then this cycle is really cycle 3 then the time I spent in remission was again 20 months. What do you think? I have either had 3 cycles with 2 20 month gaps or four cycles with 2 20 month gaps a 17 month gap and a 3 month gap
Is it normal to only go 3 months? as soon as I get on the varapamil and steroids it breaks the cycle and I dont have anymore attacks. Am i just lucky? There is no normal, but I do not consider having to take steroids as luckyalthough it certainly beats suffering, there are many detrimental effects to taking steroids and in my cse atleast, it has extreme psychological and physiological side effects which are in themselves very difficult to overcome. My doctor does not know how long to keep me on varapamil and thinks that I may ned to stay on it for life? I taper off of Verapamil as tolerated. I begin too taper several weeks after my last attack at about 120mg every week. If I sense a recurrence, I will increase the dose to the prior level.
Am i lucky to have a doctor willing to precribe steroids, varapamil, sumatriptan, indothmetacin and O2 or are all doctors getting better? Yep!
PLEASE let me know what you think as I feel very alone and noone understands. We all understand. That's the beauty of this place.
Thank you fellow sufferers
Thinking of you all and you as well
Love Love
Michelle Rich x x x x x x |
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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