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        Supporter's Corner >> Supporter's Corner >> any ideas anyone.......?
        
(Message started by: boxer18 on Jul 19^th, 2007, 8:43am)

Title: any ideas anyone.......?
Post by boxer18 on Jul 19^th, 2007, 8:43am

well....my mum has cluster ever since i can remember almost every day of her life has she is a chronic.doctors just dont know what to do with her! she is currently having DHE is hospitals every few months but this cant go on as it is causing so many others problems in her body. she has tried everything but now i feel like we are coming to a dead end??
anyone got any ideas????

Title: Re: any ideas anyone.......?
Post by Jackie on Jul 19^th, 2007, 1:28pm

Hi Boxer...

Sorry to hear about your Mom. DHE can be rough for sure.

There is an OUCH UK site. Perhaps they can be of more help.

I'm at work on 'dial up'....sorry I can't be of more help.
Someone will come along though....who knows much more than I.

Keep us posted....
Jackie

Title: Re: any ideas anyone.......?
Post by nani on Jul 19^th, 2007, 1:46pm

Hi boxer. I've never used DHE treatments, but I doubt I would because of the potential side effects.
There are a number of safer preventatives available. Verapamil, Lithium, a combination of both, and others.
Look here for some ideas to discuss with her dr.
http://www.ouch-us.org/medications/medications.htm

Have you visited the ouch-UK site? There are a number of folks there ready to help. They even have a support phone line. Call them! :)

Thanks for being such a good supporter to your mum. :-*

hugs, nani

Title: Re: any ideas anyone.......?
Post by Rosybabe on Jul 19^th, 2007, 2:28pm

Hi Boxer!

Nani is right you should try to contact your O.U.C.H. because you guys seem to have a lot better medical system and the meds you can take in the UK are different or under different names than those in the US.

Here is the link to O.U.C.H. UK, there is even a helpline where you can call..

http://www.ouchuk.org/html/

Hoping the best for your Mum and thanks for being such a great supporter! :)

Title: Re: any ideas anyone.......?
Post by clusterwife on Jul 19^th, 2007, 2:57pm

Hi, my hubby had TN surgery. he has a remarkable status, even able to go pill free. He uses 02 when one does hit. pm me, i'll explain more, lots of sensitive people here at times. Leah.

Title: Re: any ideas anyone.......?
Post by E-Double on Jul 19^th, 2007, 3:18pm

Hiya love,

When you say MUM has tried everything what do ya mean?

All meds have side effects.
That is a fact.
What we try to do is find a balance between them and living as functionally as we can.

I am chronic however went med free for the past year and only aborted with O2 with exception to a few times taking a med.

I recently had a hospital stay inwhich I did DHE and if nothing else I am sleepoing through the night again.

I agree about contacting OUCH UK and trying to get an appointment with a doctor whoi is CH knowledgeable

Good luck and hang in there!

E

Title: Re: any ideas anyone.......?
Post by boxer18 on Jul 20^th, 2007, 4:01am

thanke people its nice to know there are people to talk to!

when i say everything i mean everything! O2,Verapamil, Lithium, but the verapamil gave her heart problems and circulation problems so she was taken off that now she has been put on the DHE which she has been having for 3 1/2 yrs but now thats starting to take its toll, and is only lasting about 4 weeks and in that time she still gets at least 2 headaches a day and she goes back to normal of more then 8-10 a day sometimes more. they said somthing about a operation but we cant get any funding from the local goverment but we are pushing that as hard as we can as that may be the answer!

thanks for the link to ouch that helps me and my brother we are going to phone them tonight together.

thanks

boxer

x

Title: Re: any ideas anyone.......?
Post by Margi on Jul 20^th, 2007, 9:59am

Hi Boxer,
So did you call the UK Help Line last night, then? They are wonderful people, aren't they?

I'm so sorry to hear about your mum - this is hard on supporters, especially kids. Are you young?

I know you've gotten some good advice from the OUCH UK folks, the collective cluster knowledge they have there is unsurpassed and will do their best to point you and your family in the right direction.

One last thing, although you will see the odd success story about surgery, please consider all other available options before you consider it for your Mum, ok? You will find that most of the success stories are rather recent, and very may well have put the sufferer into a remission. The kicker there is that there hasn't been enough time passed to prove that the remission is permanent. There are a few different kinds of surgery and, as yet, we haven't found one that is inconclusively successful.

There is the gamma knife surgery that deadens the trigeminal nerve - the TN surgery spoken of above, but only on one side. Quite often cluster comes back on the other side. There is the deep brain stimulation, in which a pacemaker of sorts is inserted. Again, no conclusive permanent successs. There is also the occiptal nerve block and is does also provide relief, albeit temporary. Surgery should only ever be considered as a last option, ok?

There have been quite a few people reporting long lasting relief from the alternative therapies such as psilocybin mushrooms and various seeds. These things actually go right to the root of the problem and work on the seratonin levels - the thing that all clusterheads have out of whack. So far, this is looking to be the most promising of the treatments out there. Sadly, still illegal but there have been clinical trials done to prove to the powers that be that this route should be considered a viable treatment plan in cluster therapy. There is more information here: www.clusterbusters.com.

You are your Mum's best advocate - there is little that we, as supporters, can do to stop the pain. But we CAN research the hell out of it and hopefully turn over that rock under which the cure is hiding. My husband is trying the seeds right now with amazing success. He's been a clusterhead for close to 30 years now and we are seeing good results so far. Please don't throw the baby out with the bathwater and disregard this alternative option, ok?

Hugs to you, hang in there. If you need to talk off the board, my email is moxie_miss@hotmail.com.

Margi