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seven

(Member)
From: melbourne
12 total posts
Currently suffering :(
12 Dec, 2014 - 5:12 am
hi everyone

my partner had radiotherapy of the nerves in Alfred. since then nothing works, even prednisolone. he was on 40my for months still was getting headaches. We had to cut them down because acne, cists... Trying indomethacin now because veripilim and lithium not working anymore. Any idea how long we should give try to this medication. Any other opinions? need help.. He is chronic (oxy, veripilim, lithium, prednisolne of the chart)
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0<(seperate Wolf Mask)

(Member)
From: Gold Coast
1 total posts
Currently suffering :(
18 Dec, 2014 - 11:31 pm
The only thing I would suggest would be a non hallucinogenic dose of Psilocybin or Bromo-Lysergic-Diethalymide
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Harp

(Member)
From: Mulgrave
14 total posts
Not currently suffering :D
28 Dec, 2014 - 9:59 am
Sorry to read that things are so bad. Do you live in Victoria?
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Harp

(Member)
From: Mulgrave
14 total posts
Not currently suffering :D
28 Dec, 2014 - 10:01 am
Sorry to read that things are so bad. I was wondering if you lived in Victoria?
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seven

(Member)
From: melbourne
12 total posts
Currently suffering :(
28 Dec, 2014 - 11:45 pm
yes we do live in Melbourne, Cheltenham. Thanks for all support we have manage to get headaches under bit control. Now every 6hrs, which is like holiday for us, he control them by Zomig ang Oxy. I got non breathable mask and high flow oxy. So far he is not having really painful ones. 5 out of 10. Long years 15lt oxy, verapamil and lithium vas working ok. Unfortunately nature of this illness never know what will happen next. Thanks to all and HAPPY NEW YEAR to all. Hope for less painful years.
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Harp

(Member)
From: Mulgrave
14 total posts
Not currently suffering :D
29 Dec, 2014 - 11:31 am
Good news! Always heartening to read when there is a positive shift, however small that may be. I hope that it continues.
This website makes you realise that when you are feeling that the rest of the world does not exist and you are forgotten and alone - irrespective of whether you are a sufferer or career, that one must keep trying!
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Inuk

(Member)
From:
5 total posts
Currently suffering :(
18 Apr, 2015 - 8:20 am
Hi Seven,

Here are some medications to try if "nothing" work:

- methotrimeprzin (levomepromazin in UK) 2 to 5 mg if strong pain, up to 4 times a day. It can be increased up to 15mg 4 times a day if you tolerate the sleepiness

- frovatriptan is a brother of sumatriptan. It last more than 24 hours and can used in a preventive way. 2,5 to 5 mg a day. It won't necessarily abort a crisis but it will attenuate it.

- dihydroergotamine 1mg IV daily for 3 to 10 days. Can also be given IM or SC

- indomethacin 75 to 150 (250) mg per day (divided in 3 doses) (but not if you take lithium or steroids)

Maybe you tried them but if not, you can dicuss them with your doctor.
Good luck!
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Hazza27

(Member)
From: Maylands
6 total posts
Currently suffering :(
02 Jun, 2015 - 1:47 pm
seven said:
"hi everyone

my partner had radiotherapy of the nerves in Alfred. since then nothing works, even prednisolone. he was on 40my for months still was getting headaches. We had to cut them down because acne, cists... Trying indomethacin now because veripilim and lithium not working anymore. Any idea how long we should give try to this medication. Any other opinions? need help.. He is chronic (oxy, veripilim, lithium, prednisolne of the chart)"
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Hazza27

(Member)
From: Maylands
6 total posts
Currently suffering :(
02 Jun, 2015 - 2:08 pm
Hi Seven, after suffering for 28 years I stumbled upon a doctor in Perth whose partner also suffer from this disease. We tried everything and then he gave me Imigran nasal spray 25ml to try. At first it did nothing to alleviate or stop the attack. At the onset of the next attack I took two doses of 25ml and it stop the cluster.

The crucial thing for me was to administer the spray as soon as I felt the beginning of the attack, in my case it was the stiffness in the right side of my neck. It does not cure the cluster, only preventing it from happening. I have now been cluster free for 3 years but always carry a spare supply of imigran with me as you can only get it on prescription
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