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31 Jan, 2009 - 3:44 am

G'day‚ my names Gus. I'm a 40 year old and have had Ch for over 15 years.For the last 2.5 years my cycle hasnt stopped‚ just changed intensity. I generally have between 6 and 10‚ 2 hour attacks every day/night with the pain swapping sides a few times a day. I live in Port Douglas‚ Far North Queensland. The nearest Nuro is 10 hours drive in Townsville and he was absolutely useless. My G.P has given up as i have tried every drug he knows of with no success. The most relief i have is from Co2. He told me today i must make it my mission to find the number 1 CH specialist in Oz as he is convinced i will need some form of surgery (operating on what i dont know!!) I have a family so i will not be beaten but its sure wearing me down and taking a heavy toll. I feel i am on the verge of losing my sanity. Can someone please help me in locating a Nuro who really knows Clusters. I will mortgage my house if need be to make the trip but i have to find someone who can help me before the last part of me is gone and i become a zombie.
Thank you‚
Gus Gardiner

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01 Feb, 2009 - 5:12 pm

Welcome to the forum.

I assume you mean O2‚ not CO2 If you've tried all the medications listed on this site and none of them do anything‚ then I don't see what a CH specialist will be able to do. I've never heard of going through surgery to fix CH.

Have you tried the mushrooms and water treatment listed on this site? A lot of people find that they work well‚ so they are worth a try.

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02 Feb, 2009 - 3:23 am

thanks very much for your response. yes ive tries mushies and even lsd. It seems to work on the day but it rebounds a lot longer and worse the next day. I'm gonna give the water treatment a go tomorrow‚ though i'm a working solo musician and have to perform every night for 4 hours on stage so i dont know how i'll go with going to the toilet...but i'll certainly give it a whirl..The only time i'm generally safe is when i sing (must be the elevated heart rate).. yep definately 02 hehehe. Yes that was my theory on surgery too !!! but my GP is out of ideas and is as desperate as me to find help. I think i need to resign myself to the fact that i will be like this forever‚ at least now i know i'm not alone...thanks anyway.
Gus

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02 Feb, 2009 - 12:56 pm

Hi Gus‚
My Neuro did briefly discuss surgery for me about 12 months ago‚ due to my state at the time‚ I remember little about it except it would leave my left side of my face (CH side) perminantly numb or at least lose most of the feeling from that side.
This is all I can remember but surgery has definately been discussed.
Hang in there
David

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08 Jun, 2009 - 11:53 pm

Hi GUS‚ forget the water and mushies etc‚ just ask your doc for some TEGRETOL‚ its a nerve blocker - stops the brain receiving pain messages‚ so you head wld still be having an attack but u dont feel it‚ no pain woohoo (just a warm head)‚ it works‚ im using it now and used it 2 yrs ago (last cycle)This post was edited on 13/09/2010 at 1:12 am

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05 Jul, 2010 - 1:54 pm

Hey there gus‚

Greetings from the uk mate‚Im moving to adelaide in october thats why im on the aussie site.

There is a surgery available here in the uk‚its a bitch to get done but it is possible. I think it involves some sort of electrodes inserted into the skull (around the trignmenal (!?) nerve that causes us all the problem) which is then controlled by a box you wear on your belt ( sounds abit frankenstein meets star trek i know) there was a doco on here a few years ago but i only caught the end of it. Have you tried lookin on clusterheadaches.com ? There are far more people worldwide that use that site and you may be able to get far more reliable info than mine!

My clusters are nothing compared to yours and they push me to the limit! Have you tried VERAPAMIL? i think its called ANPEC downunder and IMIGRAN? aussie docs prescribe the imigran nasal sprays but it also comes in injection form which makes it easier to dose. Its expensive there but it really does work with minimal side effects - you can only use so much a day mind! triptans slow your heart rate down!

Hope this has helped mate.

Simon.

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06 Jul, 2010 - 9:44 pm

Hi Sye
Well you are coming to Sunny South Australia (unfortunately not that sunny at the moment)
We have a great CH neuro here in SA‚ will send you the details by private message.
Keep in contact with us.
My current treatment is
Verapamil
Topamax
Imigram (expensive)
Cheers
Heather

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08 Jul, 2010 - 6:56 pm

Gday Gus

I have had surgery in which they cut nerves on the effected side‚ the main nerve being the tregeminal nerve they cut about 25mm out of it so it cant grow back they also cut 6 minor nerves.

The short story is it didnt work.

The operation left the left side around my ear and neck abit numb which dosnt worry me at all ‚ but takes abit of getting used to.

I am convince that the problem for me is the Greater occipital nerve
which Im told cant be cut because the face will drop on that side similar to bells pausey.

Im currently looking at having a occcipital nerve block as some people have had great success.(see posts by benny)

Also I think my cycle lasts longer and more severe than prior to the opp‚ but that could be the way it is.


Hope this helps
If you find No1 please let us know.


wayne

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11 Jul, 2010 - 9:41 pm

Well it seems we really cant come up with what appears to be the definitive answer to our problem does there?
I am currently sitting in hospital (was going to keep quiet on this one but have decided not helping the situation at all) after my what is now my 4th trip and 6th week of medical treatment and to tell you the truth people have had a gut full.
1st treatment: post Christmas--2 weeks in 2 hospitals country and city ending with heavy course of oral prednisolone with mixed results (weight and moon face being the negatives) with perhaps a lessening in attacks for a short period.
2nd treatment: to Adelaide after increase in attacks and severity; this time IV prednsisolone followed by oral. Holy moly‚ nearly knocked my socks off‚ but I did get 13 days pain free. My old life was starting to show through. But then back to the old with increase in attacks and again severity.
3rd treatment: to Adelaide again in dire need of help. This time IV DiHydroErgotamide (DHE). Felt bits of me coming back‚ pain eased. 5 days of treatment‚ but on way home could feel them already coming back. Not very successful‚ not home 48 hours and back in hospital again.
4th treatment: to Adelaide again with pain increased. I still say I dont hit a 10 but getting harder to deny that there is in fact a 10. They were getting longer and closer together. This time started on DHE again‚ but with headaches breaking through included IV prednisolone again. Last dose today; but still can feel the headaches breaking through but thankfully not lasting long.
So since Xmas‚ 6 weeks in hospital‚ away from home and husband and animals is one thing‚ but not having what I see is an answer to my problem in the REAL problem.
Is there a definitive best practice CH neuro is Australia. Dammed if I know. My neuro on leave and will be seeing him on his return in a fortnight. I am under the care of a physician at the moment who seems to think that it is best to joke about the situation ie "sign a piece of paper to say wont have a headache for 2 years and wont be back"--did not go down to well I can say. Especially as I was sitting there with a headache sitting on a 5-6.
Even in in cycle or not‚ my intention is to request a referral to another neuro for second opinion with his blessing and cooperation--I dont want to lose him. I will not go down the line of more medical intervention--it is simply not working and I want my life back in at least some livable form--not as it is.
If this means going interstate‚ that is what I will be doing. Will keep you all advised if I find out anything.
I feel a little like a diabetic being sent home with "i think this insulin will work‚ play around with it". After nearly 2 weeks in hospital to be sent home on the same drugs and to be told cant have anything else because might become addicted is bull shit; what a waste of time and energy--AND MONEY. If I can get some pain relief IF I do "go down" again before I see neuro on 23rd I will really be . Does anyone have any experience with OXYCONTIN?
Cheers
Heather

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13 Jul, 2010 - 6:35 pm

Hi Dusker‚
We hear you‚ there will be something out there that works for you.

Have you tried Verapamil‚this has worked for me in the past‚ It didnt stop the CH but reduced the intensity alot. This time around im not using it because makes me very tied and I find it hard to do my job. But I am struggling with the severity‚ so using alot of Imigran‚ its a vicious cycle‚ if I use verapamil I dont earn money If I dont use it I spend the money on Imigran.

With verapamil it takes at least a week to start working.

Hang in there my cycle normally ramps up and you think you cant take anymore then ramps back down and leaves.


Wayne

PS Morphine will not work for CH.

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13 Jul, 2010 - 7:45 pm

yep‚ on Verapamil‚ and have been for some time.
I think the only reason that Endone works is that it knocks me out a bit and I become a bit of a zombie‚ whereas Pethedine just excites me and I become a raving lunatic. Going to try Oxycontin for a few days (slow release) if nothing else I can report back to the group as to what use these drugs are for me--heh! I am a guinea pig! Also going to look at acupuncture hynpontherapy but definitely not orange blossom therapy!! Left hospital this am‚ with the be a good girl talk‚ and did a dummy spit. Dont treat me like a child‚ I am an adult capable of being positive and no‚ I will not sign a piece of paper that says I will not be back for 2 years with a headache--as I stood there with a class 7! Grrrrr
Settle petal
Night night
Heather

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13 Jul, 2010 - 7:53 pm

G day again

How much verapamil are you on alot of sufferers need a very high dose‚ I have read that some are on as much as 1000mg aday.
480mg a day seems to be a common amount‚ also they use regular release not slow release. thats 240mg morning and night.


wayne

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13 Jul, 2010 - 9:54 pm

160mg slow release‚ twice a day‚ any more than that and you have to find the truck that hit me.

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14 Jul, 2010 - 12:34 pm

OK you lot!
I have started a search of the major hospitals in Australia and requesting information from the neurology departments as to who they consider are the neurology gurus in cluster headaches and cluster headache treatment. May not get anything out of it‚ but thought might be worth the effort. Will let you outcome if any.
Cheers
Heather

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29 Aug, 2010 - 10:16 pm

hi all my doctor just loved handing out the opiates , time after time and it took me a while to work out that it wasnt the drugs stopping the pain , it was just the ch deciding to leave me in peace for a while . I was taking the most horrendous doses of morphine and ended up in hospital (accidental overdose ) where a lovely young english intern introduced me to the wonders of the nasal spray . Tegratol ? Has anybody else had joy with this ? Amazingly , aspirin is giving me about 20 min respite at a time but how much is too much ? I would like my life back sometime soon !

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30 Aug, 2010 - 8:08 am

Hi Sean
Not used Tegratol. Are you referring to this as the nasal spray. And aspirin? Opiates are not the "norm" for treating the pain for CHs simply not effective. Have you considered changing your doctor. Vic Park which state? Heather

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06 Sep, 2010 - 10:29 am

Hi heather, sorry I nearly missed your post. I read somewhere that Tegratol worked for some people. I have been using the Imigran nasal spray and the tablets and yes, the opiates are useless, all they do is knock me out and make me feel like crap.
I think my verapamil dose may be too low, I saw that someone used 1000mg per day? Seems like quite a lot. I'm also using sandamigran, but it knocks my socks off (9 per day). I have had 2 full nights sleep in a row at the moment and my old self is starting to shine through again...
I'm in Western Aust.

Hope all is well
Sean

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07 Sep, 2010 - 10:35 am

Hi Sean
Have picked up your other posting so will refer to that one re medication.
Just keep a record of what you are doing that is the key message.
Cheers Heather

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