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hello very new to ch,and really wishing that i wasn't

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#1 Mon, 23/02/2015 - 22:23
kevwolf
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Joined: 23/02/2015 - 21:36

hello very new to ch,and really wishing that i wasn't

hello my name is kevin,

the last month and a half have been one of the worst in my life,

but im sure you probably already know that.

started with a throbbing headache on the left side of my head,eye felt like grit or dust in it,watering,and nose of left side was like a tap had been turned on,just what i wanted a cold.

i was on a training course from work,which was a long comute to coventry by train.

my head just kept reminding me it was hurting,seemed to be growing in pain.

got to the training centre,took two para had hoped it would start to ease but it just got worse.

i remember going very light head when going to toilet and then ended up at Coventry AE,doctors rushing in drip put in and antibiotics put up im guessing as it was just a blurr as i was now in the worst pain of my life.gave me morphine,said that should calm it down,so wrong it got worse.i just wanted to rip my head and eye out.

rushed off for ct scan,remember being told were treating you for menigitis/ encephalitis,even though i was in unbearable pain,it scared the life out of me.

full scan,blood tests,6 attempts to do a lumber puncher,failed.

kept on antibiotics,counted 5 or 6 bags,as sleep wasn't an option.

three days later told you can go home,we can't find out whats wrong with you,even though i was still in some pain,kept coming and going,i went home to wolverhampton,it was just too much for my wife to keep travelling.

the head nurse was so angry i was being discharged,said if in any more serious pain phone 999.

but they wanted the bed,so i went home.

the weekend was a weekend i will never forget,the pain came back,i felt like banging my head against the wall.

monday phoned gp.finally got in on the evening,she had me admitted into New cross hospital,finally got a bed after 11 and half hours in pain,i screamed at a doctor to help me,said the only thing he could suggest was gas and air or para as more senior doctor wanted to see me,the gas and air was the first time i felt almost normal again.

was rushed off for another ct scan,said far more in depth,and did perform a lumber puncher,again put on more antibiotics.

then two days later consultant come and said in front of me,whats he still doing here,if i wasn't in such pain again,well you can guess.

you can go home,nothing life threatening,and get your doctor to refer to a neurological doctor,i was on the neuro ward,asked if i could see someone there and then,told no it's got to be via referal,and walked away.

i was discharged and went straight to gp,as i was still in as much pain as before when they come full on.

said have they presribed anything,only nortriptyline and imigran tablets which worked but took ages to work,

my gp was angry that they had discharged me,and sent an email to the said consultant.

she put me on imigran injections,said they will work much quicker,and to be fair they are the only thing keeping me going at the moment.

sorry for such a long post.

but im very new to this,and wish i wasn't

kev :-( 

Kevin Crook

Tue, 24/02/2015 - 11:10
ElmaA
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Last seen: 5 years 1 month ago
Joined: 26/02/2014 - 14:55

Hello Kev,

was deeply sorry to read your post, the pain you are suffering and the way you have been treated , can't believe that you were in the neuro ward and was not able to see a neurologist , after all the tests that were done surely that was the next test,  the mind boggles,

you have done the right step coming to ouch,

the imigran injections are good,(work well for me)only 2 per day..oxygen is another . I hope you get sorted out soon .

good luck and take care

elma

 

 

Tue, 24/02/2015 - 11:44 (Reply to #2)
Dorothy
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Joined: 19/02/2014 - 10:16

Hi Kev

Welcome to OUCH.  Sorry for all you went through - it takes my breath away to hear that these things still happen because of lack of knowledge!  What a good job your GP knew enough to give you the injections!  You should also have high flow oxygen but I suggest ringing the helpline on 01646 61 979 and they will advise you on treatments and where best to be referred to in your area.  Just leave your details and a landline number and they'll ring you back free of charge.

Dorothy

 

Tue, 24/02/2015 - 16:53
Phil
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Last seen: 4 years 6 months ago
Joined: 26/02/2014 - 17:02

Hi Kev and welcome, but sorry you need to be here too.

Sounds like your luck is changing for the better: it's usually decades before a sufferer is diagnosed correctly, and to get Imigran injections so easily; we usually need to kidnap a doctors close family member to negotiate treatment. Keep hold of that doctor and ring the helpline, you're in good company now.

Phil.

_________________________________________________________________________ Yeah I know, my coat's already on.

Thu, 26/02/2015 - 10:52
oxfordgarage
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Last seen: 6 years 3 months ago
Joined: 29/01/2015 - 18:18

Kev sorry to hear your troubles! It took the doctors nearly 11 years to diagnose me and still have to fight for imigran injections. I am 2 months into my cycle every bloody night last night was a nightmare every hour woken up with an attack. Even the oxygen was taking time to work worst night since CH.....Wish and pray for them to go physically wrecked!!

Thu, 26/02/2015 - 11:42
kevwolf
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Joined: 23/02/2015 - 21:36

hi all,

thank you for your comments,and hope you all get some sort of relief from it.

i have been put on prednislone tablets,to try and give me a break gp said,which i actually woke the next morning with no pain,which lasted till around 10.30.

again after that and taking second lot of tablets(12 at a time),i didn't feel too bad pain wise.

but just as i was feeling this might be working,at 3.30ish was woken by an incredible pain,one of the worst yet,actually had me crawling round the floor in agony.

finally eased after an injection,and i must of dosed off in the chair.

went to respiratory centre to sort oxygen out this morning,the nurse dealing with me said are you ok,as your eye on the left has started watering and drooping,she actually went and got me an injection from where i don't know or care about,it helped.

so not to sure how long these tablets are supposed to take to give me a break,but doe look like it or feel like this morning,oxygen coming tommorow ....

Kevin Crook

Thu, 26/02/2015 - 18:28
Phil
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Last seen: 4 years 6 months ago
Joined: 26/02/2014 - 17:02

Interesting. You're only allowed 2 triptans a day, so you would need to know if the injection was one. Some drugs are contra-indicated, hopefully, she understood your drug regime.
As for 12 tablets at a time... What flowers do you like?

_________________________________________________________________________ Yeah I know, my coat's already on.

Fri, 27/02/2015 - 11:35 (Reply to #7)
kevwolf
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Joined: 23/02/2015 - 21:36

hiya Phil,

flowers not planning on any yet,hopefully,just taking what they say to at the moment,they are supposed to know best?

Kevin Crook

Fri, 27/02/2015 - 11:35 (Reply to #8)
kevwolf
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Joined: 23/02/2015 - 21:36

hiya Phil,

flowers not planning on any yet,hopefully,just taking what they say to at the moment,they are supposed to know best?

Kevin Crook

Fri, 27/02/2015 - 12:38
Phil
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Joined: 26/02/2014 - 17:02

You're prescribed 12 tablets at a time?
Sheez. That's a meal where I come from. I'd lose count.

_________________________________________________________________________ Yeah I know, my coat's already on.

Fri, 27/02/2015 - 18:29
kevwolf
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Joined: 23/02/2015 - 21:36

hi phil,

it works out 60mg....12x5mg so not sure if thats alot or not,but supposed i have gotto trust them aye

Kevin Crook

Fri, 27/02/2015 - 20:42
Harrietjt
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Last seen: 3 years 7 months ago
Joined: 22/10/2014 - 12:47

Hello, if it is any help; my husband is occasionally given prednisolone to try for some CCH relief and it is 60mg for five days, then 50mg for three days, 40mg for three days, and so on til zero. I do remember it being a lot of tablets in one go. 

Harriet

Tue, 03/03/2015 - 20:06
Rano1
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Last seen: 5 years 6 months ago
Joined: 03/03/2015 - 19:21

Hi Phil, like you I start on 12 and work down by 2 every 5 days. They do offer me great relief.......until I taper down and bang they return with avengence. They do mess with my sleep pattern mind - go to bed shattered but end up laying there. Apparently that's a side effect. Ask your doctor for some sleeping tablets to help you through that. Also my appetite is through the rough...maybe ill take up bodybuilding lol

James 

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