OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Advice Line

0800 6696 824

New to posting on OUCH

9 posts / 0 new
Last post
#1 Tue, 15/11/2016 - 21:22
Njacktastic
Njacktastic's picture
Offline
Last seen: 6 years 7 months ago
Joined: 15/11/2016 - 20:42

New to posting on OUCH

Hi All

I am new to posting on OUCH my name is Nathan I'm 29 and live in Newcastle. I've had cluster headaches for a number of years but never been one to talk about them with other sufferers.  I have tried a number of medications and procedures over the years with not much luck.

At the moment I'm going through a very bad spell where I've been on on Prednisolone which previously has been the only thing to break my cluster cycle (but can only have these once every 6 months) I am currently on the dosage comedown but this medication has had no affect on my attacks with me still currently having 3/4 a day. I am currently unable to work nor do many day to day activities due to this current bout of CH. I have just been prescribed Lithium with the hope of breaking this current pain infused period. Has anyone tried lithium? And if so what was the outcome? 

Im currently in th process of getting transferred back to Proff Goadsby who originally diagnosed me with CH.

Is anyone on here based in the North East as I feel talking to someone who sufferes the same feeling of this terrible dibilitating problem would really help me in my current situation.

Thanks for reading

 

Nathan

Wed, 16/11/2016 - 10:46
MissKittyB
MissKittyB's picture
Offline
Last seen: 6 years 11 months ago
Joined: 29/03/2015 - 10:59

Hi Nathan and welcome!

Sorry to hear you are dancing with the Beast at the moment, but theres plenty of help and support here, and quite a bit of dark humour too! Must be the time of year- I'm going through a bad phase too (as I'm sure are many others)- I currently blame the Supermoon ;-) 

Like you, I cant work and find daily activities a struggle, so you are not alone. We have all been through it, and if you get stuck ony any aspect of the condition, (meds, benefits and so on) please contact the helpline.

I'll write more about medication on your other post.......

Miss KittyB (in Robin-Hood County)! Bye

MissKittyB.

Wed, 16/11/2016 - 18:37
Val
Offline
Last seen: 2 days 1 hour ago
Joined: 21/03/2012 - 15:16

Hi Nathan

And welcome!  Although wish you didn't have to be here, if you see what I mean.

We have an excellent helpline, all our volunteers are sufferers or supporters of sufferers and have a wealth of experience of CH and the other TACs.  You can ask all the questions you want and find out what other treatment options might be available.

Lithium did nothing for me, so I came off it.  I suffered some nausea and dizziness and felt slightly 'out of it' while I was on it.  It has a bad press because it is commonly used in the treatment of bipolar disorder.  But there are some sufferers who have achieved good prevention with it.

Val.

Fri, 18/11/2016 - 10:11 (Reply to #3)
Njacktastic
Njacktastic's picture
Offline
Last seen: 6 years 7 months ago
Joined: 15/11/2016 - 20:42

Hi

thanks for getting back to me. I need some help with benifits available and how I can apply for them. Would you be able to point me in the right direction please? 

 

Thanks Nathan 

Fri, 18/11/2016 - 11:28 (Reply to #4)
MissKittyB
MissKittyB's picture
Offline
Last seen: 6 years 11 months ago
Joined: 29/03/2015 - 10:59

MissKittyB.

Fri, 18/11/2016 - 11:29 (Reply to #5)
MissKittyB
MissKittyB's picture
Offline
Last seen: 6 years 11 months ago
Joined: 29/03/2015 - 10:59

Hi Nathan.
A quick call to the helpline! They can advise, or put you in touch with The Brain Charity. Most of us have been through the minefield of ESA and PIP so its important to know exactly how to go about filling in the forms CORRECTLY (!) and what sort of 'evidence' to provide. It's a real pain in the bum. And most forum members can provide solid advice and helpful hints too!

MissKittyB.

Fri, 18/11/2016 - 16:51
Val
Offline
Last seen: 2 days 1 hour ago
Joined: 21/03/2012 - 15:16

Miss Kitty beat me to it!  Good luck Nathan.

 

Fri, 17/02/2017 - 23:12
Helen c
Offline
Last seen: 6 years 10 months ago
Joined: 16/02/2017 - 20:55

Hi i am new to the site, sorry for posting in the middle of another one but I cannot figure out to make my own topic. I was just wondering if anyone has used the surtriptin injections and experienced more pain. I used one for the first time the other day and it took the pain away for about 10mins but then it came back just as bad if not worse, I am now afraid to use again.

Helen Chalkley

Sat, 18/02/2017 - 08:45
Mr Git
Mr Git's picture
Offline
Last seen: 5 years 4 months ago
Joined: 26/02/2014 - 14:34

Hi Helen

I suggest you call the Helpline on 01646 651 979

Just leave your number and one of the volunteers will call you back. They are all either sufferers themselves or supporters of sufferers. They will be able to give you the best possible advice.

In the meantime, hang on in there, help is at hand.

Sean Wink

__________________________________________________________________________
Warning: This forum may contain nuts
 

Login to add comments

Share This

© OUCH(uk) 2024 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368