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New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › I need advice in re: docs

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I need advice in re: docs (Read 1294 times)

chiaspet

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This is me with a CH!!!!

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x1|Jacksonville Beach|USA|usa|456|258|FL,Florida
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I need advice in re: docs
Dec 1^st, 2008 at 8:18am

I seriously need some advice as to what I should do.

I have been a sufferer for 23 years, only getting diagnosed 10 years ago. I am lucky enough to have episodes every other year. My last episode, I was mistreated by a GP who had me on prednisone for 1 month with no follow up drugs. Needless to say that was one of my worst episodes to date.

I saw a Neurologist who recommended a quick pred. pack followed up with Topamax - which I hated. I was a nut job on that stuff.

I feel like I should just go through the episode doing my o2 and imitrex shots - they last anywhere from 3 weeks to 3 months. I am so worried that if I try to abort them with meds that they will come back with a vengence!!

PLEASE help....I only have 3 shot packs left and am getting nervous!!

P.S. I get the 6mg shots and get two shots out of one syringe using the manual injection method.

Thank you,

Renee Undecided

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Guiseppi

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Re: I need advice in docs
Reply #1 - Dec 1^st, 2008 at 11:27am

There are many on the board who have gone the "med free" route claiming it has shortened their cycles, I salute them but cannot join them!! Wink

There are 2 popular preventatives you haven't mentioned, verapamil and lithium. I have no real experience with the verapamil, but lithium has proven to be my silver bullet. At 1200 mg a day it blocks over 80% of my attacks, I use oxygen and the occasional trex jab for the break thru's. Side effects have been very minimal for me. You need a lot of blood work the first time around to get your levels right, you pee a lot the first 2 weeks and there's a bit of lethargy. Not TV zombie lethargy, a cup or 2 of coffee is all it takes for me. Ask your doctor about trying lithium or verapamil as a preventative medication.

For long term consider adding a daily magnesium supplement to your regimen. I've been doing so for many years at the suggestion of my neuro and believe it has reduced the number and intensity of my cycles. Many on the board have posted similar results. If you do start taking magnesium you need a calcium supplement too as magnesium leeches calcium outta you.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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chiaspet CH.com Newbie Offline This is me with a CH!!!! Posts: 13 x1\|Jacksonville Beach\|USA\|usa\|456\|258\|FL,Florida Gender:	Re: I need advice in docs Reply #2 - Dec 1^st, 2008 at 1:12pm thank you sooo much for the response. this illness is so rare and we all share the pain, which is why i am so surprised at the lack of responses to my questions...i am currently in the process of finding a neuro...so wish me luck and again thank you renee
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Garys_Girl

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Making biscuits

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Re: I need advice in docs
Reply #3 - Dec 1^st, 2008 at 5:59pm

Many neuros know very little about CH! Here are neuros and doctors recommended by people with CH: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Don't give up if it takes a few. We finally wound up at a headache clinic. This is something like Gary's 7th neuro. Hopefully yours won't be so hard to treat!

And when it comes to dealing with CH, KNOWLEDGE IS POWER! Read and learn as much as you can about it on these boards and at Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

, because often your knowledge in conjunction with a neuro's will be the key to your successful treatment.

Wishing you PFDAN,

Laurie

« Last Edit: Dec 2^nd, 2008 at 5:08pm by Garys_Girl »

This is enough already

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Just Plain Carl CH.com Old Timer Offline IT IS WHAT IT IS Posts: 449 Royal Oak, Michigan Gender:	Re: I need advice in docs Reply #4 - Dec 2^nd, 2008 at 4:06pm Verapamil seemed to work for me along with a prednisone 10 day burst. If your neuro isn't doin the job, fire him and get another. Good Luck and PFD's on ya JPC
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on my knees Ex Member	Re: I need advice in docs Reply #5 - Dec 2^nd, 2008 at 5:30pm i use verapamil and have done so-so with it, trex and o2 are my definate weapons. my neuro writes scripts way above what a gp would. i only hald dose too but my neuro got me trex vials so i can draw only what i need. this has been very helpfull. a good doc is worth their weight in gold, to bad they are so hard to find.
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chiaspet

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This is me with a CH!!!!

Posts: 13
x1|Jacksonville Beach|USA|usa|456|258|FL,Florida
Gender: female

Re: I need advice in docs
Reply #6 - Dec 2^nd, 2008 at 7:59pm

Thank you all for your inputs!!! I have an appointment with a new neuro this Thurs. When I asked if the doc had other CH patients, they told me that she runs a headache clinic and does have other CH pts. Who knows...what doc is going to tell you that you are their first!!

I am going to inquire about the trex vials. Sounds like a better plan to me...the beast is coming on strong, so I need to go...again...thank you!!! Cry

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