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Topic: Been prescribed (Read 1661 times) |
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stephenireland
New Board Newbie
Comedic "Clusterhead"
Posts: 14
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Been prescribed
« on: Jul 30th, 2007, 2:54pm » |
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indometacin and Epilim
one an anti inflamitary and the other a drug prescribed to those with Epilepsy.
My neurologist wasnt all that clued up with CH and he is using me as a lab rat to test all the meds until we find something that may be effective to assist me.
He declared that it is likely because i have been suffering for 2 1/2 months that I may be going through a "chronic state". He also said that CH is the worst pain ever to be experienced... (he got that right)
I took both of the drugs at 10:30am and by 11am I had a sudden burst of energy and become ratty and hyperactive. By 1pm the hyperactive state faded and I felt sicky and laid down. At 6:30pm I WOKE UP! yes they knocked me out! (1 attack during this period of time) but most of my attacks are usually in the night!
HELP !
I, still off work, been signed off for ANOTHER MONTH. Not earning no money and the prescriptions are costing me £13 a time which I cannot afford. The DLA claim I put in for has been refused and I really am scared about the whole situation its scary to think that not even the neurologist knew what he was going on about.
Steve
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Stephen Ireland, 23, Portsmouth (UK)
"Thank you for your support everyone"
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southwalessunshine
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Posts: 121
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Re: Been prescribed
« Reply #1 on: Jul 30th, 2007, 3:37pm » |
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I know how you feel. i went undiagnosed for almost 14 yrs. Recently I went to seea neurologist at the headache clinic at the hospital and I wasn't impressed. i found this site and it pointed me in the right direction. Firstly i changed docs and luckily i got a good one straight off. I'm currently not on a preventative but I take sumatriptan pills and the injection. The tips I got from this site were to sling back 2 cans of Red Bull at the first sign of CH, this doesn't really work for me so I'm just about to try washing down caffeine tablets with my Red Bull. I'm also looking into melatonin. Has your doc suggested O2? No-one suggested this to me until I joined this site and I'm currently waiting to be accepted on prescription. I printed off links and info from this site to give to my doc so he couldn't argue. I too have been offered anti epilepsy drugs for my condition but to be honest they scare me a little. only one of the 3 they offer here in the Uk is licensed for CH, but personally i prefer to try other things and if I'm completely out of options I may consider going down that road but I'm not ready to even consider it yet. I would def suggest you at least get some Red Bull in, you never know it could help. plus do what I did, demand O2 fromyour doc. if you get it and it works it'll lower your need for the expensive drugs, leaving you to need less, because you'll still need them for the beast. hope this helps x
P.S. Before you were prescribed the drugs you're on, were you offered triptans of any kind? There's a whole range to try to see which works for you and you should be offered these before going down the epilepsy drug route. Both my drugs are sumatriptan and are at the top end of the scale, but I've tried every other one. if you haven't tried these I would def advise going back to your doc and talking about this.
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| « Last Edit: Jul 30th, 2007, 3:41pm by southwalessunshine » |
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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stephenireland
New Board Newbie
Comedic "Clusterhead"
Posts: 14
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Re: Been prescribed
« Reply #2 on: Jul 30th, 2007, 3:50pm » |
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hello, thank you for your response.
i am on o2 which helps but the only problem is i have become paranoid about going out. i pass out with my headaches as my body doesnt seem to be able to cope with the pain.
I have just ordered a clustermasx which apparently will help alot more.
redbull and coffee give me a secondary "caffeine" headache which isnt very nice  so i cant really go down that road.
I myself arnt that happy with the epilepsy tablets, they are making me feel YUCK but its a weeks trial so if they work GREAT! if not then onto the next trial drug.
The Neurologist was reluctant about giving me the sumatriptan. Is this because of cost?
Steve x
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Stephen Ireland, 23, Portsmouth (UK)
"Thank you for your support everyone"
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SmoothSippin
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Re: Been prescribed
« Reply #3 on: Jul 31st, 2007, 9:32am » |
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I am not sure why they would not give you Zomig or Imitrex. I don't think the doc should care what it costs. However, I do know that insurance no where near covers the amounts of Zomig spray that I would like to have on hand. Imitrex pills never worked for me nor the spray. I have never had the injectable kind. My insurance would only pay for like 6 of the shots a month or something. Not too much better with the sprays (like 12 a month). However they would gladly give me 30 pills of the same stuff.... of course it does not work. Beware if you have to buy the sprays out of pocket. Its like a small car payment.
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Wayne
New Board Old Timer
RedBull Rules!!
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Re: Been prescribed
« Reply #4 on: Jul 31st, 2007, 11:15am » |
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Hey Steve
I dunno how comfortable I'd feel being used as a Dr's lab rat. Actually I think I'd find another Doc ASAP. Theres no need to experiment with strange drugs until you have exhausted the tried and tested. Check the post by Bob Johnson further down the page, it details the recomended treatment for CH.
Cheers,
Wayne
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| « Last Edit: Jul 31st, 2007, 11:25am by Wayne » |
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southwalessunshine
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Re: Been prescribed
« Reply #5 on: Jul 31st, 2007, 12:49pm » |
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I agree with Wayne. Most docs I've come across haven't had much knowledge of CH so I changed repeatedly and finally I've got one who's actually listening and is researching for and with me.
Before I got Sumatruptan pills and jabs, I went right through the list of triptans. I can't remember exactly what I tried but i know I tried zomig, and a few other rizatriptans. If you're paying for your prescription then the cost shouldn't affect your doctor in any way. Besides, you are a cluster headache sufferer and these drugs are for cluster headaches. If I were you I'd change docs and ask them about the triptans.
The other thing I'm struggling with is a week long trial of the epilepsy drugs. I don't know enough about them to be sure ( as I said I was offered them but I haven't thought about them in anyway yet) but surely a week wouldn't be enough to ensure they worked properly? Hopefully someone who has experience with these drugs will post on this topic, but personally I would say a week isn't enough and if so, putting that stuff in your body would be worthless.
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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Rosybabe
CH.com Alumnus
New Board Hall of Famer
"Too much of a good thing can be wonderful!!
 
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Re: Been prescribed
« Reply #6 on: Jul 31st, 2007, 1:17pm » |
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Melatonin, melatonin, melatonin....for night hits they help a whole bunch.
You have to take 3 to 9 mg per day and they take a little to start working but once they are working you will feel the difference. Melatonin helps spacing the hits so you can get some rest at night.
It is over the counter and fairly cheap here in the US.
Please give it a try.
p.s. I wish I will pass out during a hit...
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