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Topic: Please Help (Read 340 times) |
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emilys100
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Please Help
« on: Oct 16th, 2006, 10:26am » |
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I have had clusters for a number of years and have yet to find adequate therapy.
I am currently going on 2 months right now and I have had enough!!!!
I have undergone treatment with high dose steroids and as soon as I finished them the headaches restarted. I had a nerve block, trialed Amerge, and I have a lidocaine Rx waiting for me at the pharmacy.
My doctor wants to start me on verapamil the problem is I do not want to start long term therapy because my husband and I are actively trying to start a family.
Any comments would be appreciated. Thank you!!!
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BigCoffinHunter
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Re: Please Help
« Reply #1 on: Oct 16th, 2006, 10:33am » |
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Verapamil does wonders for a lot of people. I'm not sure why you call it long term therapy? You take it for the length of your cycle, then taper off.
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BMoneeTheMoneeMan
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Re: Please Help
« Reply #2 on: Oct 16th, 2006, 10:33am » |
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Hi Doll, and welcome.
Steroids are not a cure, they are only supposed to be used as a transition into some other drug, such as verapamil. By the time you stop taking the steriods, the other drug should start working.
It's a good idea to chat with your doc about possible conflicts with reproduction.
Do you take any other meds to stop a headache once it has started, like O2 or a triptan?
PF wishes
B$
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BB
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Re: Please Help
« Reply #3 on: Oct 16th, 2006, 10:37am » |
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Hi and welcome ,
Sorry to hear you are struggling to control your CH but I am glad you are going to be a mum, hopefully soon. Many of the ladies here say that pregnancy itself can stop CH dead in its track 
Just wondering if you have used oxygen and triptans such as Imitrex to abort?
Are you hits more at night or during the day?
If you want something natural then oxygen is pretty safe when used correctly. Melatonin can also be used at night to reduce the number of night hits. Energy drinks like Red bull can also help.
Verapamil does not have to be long term, it can be weaned off once your cycle is over.
How long have your previous cycle gone for?
Take some time to read the board, there are heaps of useful information and if you can tell us more about your headaches and what you are looking for, some of us will be able to point you to the right direction.
We are also pretty good at listening to whinges so vent away anytime you need to .
Take care and painfree wishes to you.
Annette
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emilys100
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Re: Please Help
« Reply #4 on: Oct 16th, 2006, 10:39am » |
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on Oct 16th, 2006, 10:33am, BigCoffinHunter wrote:| Verapamil does wonders for a lot of people. I'm not sure why you call it long term therapy? You take it for the length of your cycle, then taper off. |
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It is my understanding to truly work as preventative therapy verapamil takes weeks to take its full effect and should be used on a daily basis for an undetermined amount of time. My Dr. would like me to stay on becasue my attacks cycle every 9-12 months.
I do not want to be on a pill everyday especially if the teratogenic effects (ability to harm a fetus) are unknown.
There has to be others in this situation... 
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| « Last Edit: Oct 16th, 2006, 10:40am by emilys100 » |
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seasonalboomer
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Re: Please Help
« Reply #5 on: Oct 16th, 2006, 10:42am » |
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welcome. I'm sorry to hear you're suffering.
A couple of quick questions and then maybe a comment or two.
1.) Have you tried O2 therapy? Many of us find quick relief from CH hits with oxygen therapy at 10-15 lpm, using a good non-rebreather mask. I generally (80% of hits) get complete relief in under ten minutes, many times even quicker.
2.) You say you trialed Amerge? Have you been given any prescription for injectable imitrex? While this does not solve your issue of finding a therapy that will suit you during pregnancy it is a triptan that many of us find effective as an abortive.
Finding a suitable preventative is probably the biggest challenge that many of us face. Reality is that many of those who find something that works, the effectiveness may change. The landscape for preventatives goes from pharmaceutical solutions such as Verapimil to alternatives such as Clusterbusting. The main reality is that you suffer from something that presently does not have a "cure". As you will see from the volumes of conversations and information on the websites, an acceptance of our situation allows us to build an action plan as to how we will cope and protect ourselves and our love ones, as much as possible, from the effects of CH.
Personally, I've pretty much focused on the abortives I've mentioned along with use of Red Bull, and largely ignored preventatives. That is me and partly an indication of my own stubborness.
Wishing you luck.
Scott
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BarbaraD
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Re: Please Help
« Reply #6 on: Oct 16th, 2006, 10:44am » |
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What Annette said is good advice.
There's also Cafergot (ergotomine) for aborting the CH. Some of us can't take the Imitrex.
Melatonin at night (9-12mg) - takes a while to get in your system so don't give up if it doesn't work the first time. It will get you thru the REM sleep (where the headaches hit) and keep down the exhaustion.
Read up on the Verap (it's done wonders for a bunch of people here).
Good luck on becoming a mom... everyone needs a hobby 
Hugs BD
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BB
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Re: Please Help
« Reply #7 on: Oct 16th, 2006, 10:45am » |
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Thats totally wrong, you wean off the verapamil once your cycle is over. It takes about 10-14 days to reach its full therapeutic effects. You certainly dont need to take it daily when out of cycle.
How long usually is your cycle? Do you know ?
Oxygen is safe to be used during pregnancy if needed.
Sounds like you need a new doctor too.
And yes I am a doctor.
Annette
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BarbaraD
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Re: Please Help
« Reply #8 on: Oct 16th, 2006, 10:52am » |
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The only ones I know of who stay on Verap all the time is the chronics.
Read up on treatments on this site, print it out and take it to your doc.
O2 is still the safest.
Red Bull and/or coffee will constrict those blood vessels that are causing the pain.
One BIG thing to remember is -- the same treatments DO NOT work on all of us. You have to find what works for YOU. This sometimes takes a lot of trial and error before you find it. Don't get discouraged.
And feel free to ask questions and/or vent -- that's what we're here for. Someone on this MB has been right where you are (most of us) and KNOW how you feel.
Hugs BD
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emilys100
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Re: Please Help
« Reply #9 on: Oct 16th, 2006, 10:54am » |
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There are some great suggestions here and I have been reading the board all morning. Thanks!!!
I will be talking to my doctor about O2 therapy, enjoying my daily latte from starbucks even more, and most importantly, I have work to do when my husband gets home.
I going to keep reading.....
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Guiseppi
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Re: Please Help
« Reply #10 on: Oct 16th, 2006, 1:32pm » |
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My most succesful preventative has been lithium. At 1200 mg a day it blocks 90% of my hits when on cycle, insignificant side affects for me. I don't know how it affects pregnancy or getting pregnant so it's something to check with your doctor on. Good luck in having the kids, my daughters, 20 and 22 now, the best things that ever happened to me. (With this board being a damned close second!!!)
Guiseppi
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