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LeLimey
Ex Member
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Hi again!
Well - your doctor is kind of on a sticky wicket with NOT prescribing you the injections given that he's already given you the pills - its the same drug, merely in a faster acting format (and a hell of a lot more expensive!)
If he doesn't want to prescribe I can 100% guarantee it will be on grounds of cost and thats unacceptable.
In the case he does say no, point out he has already prescribed imigran, all you are asking is for him to change the method of delivery and tell him if he refuses you will go to the PCT (Primary Care Trust)
They WILL overrule him and he'll get a slapped wrist too so I don't think he'll be overly keen to go that route.
Doctors sometimes get edgy with really expensive drugs (and Imigran is £126 per stat dose kit - two injections!) A lot of them aren't aware (or are too lazy) that they can get extra money from the NHS for high cost patients so their budget isn't compromised. That's when you know if your surgery has a good practice manager or not!
As for Doctor Evangelou - I would be overjoyed if you get to see him, he's wonderful. His secretary is a lovely girl too and if you get an appt a long way away, ring QMC and ask to speak to Dr Evangelous' secretary and explain you're in pain and in cycle and can you be considered for any cancellation appts. She is so sweet and will absolutely do her best to fit you in too.
I know you've been reading here etc but I also know how much "overload" there is when you first find this place. Have you tried strong coffee or redbull when you can feel it building? It really helps. Don't sip either though, drink them as fast as you can! Sugar free or normal makes no difference by the way. I actually use Asda's own "Blue Charge" version of red bull as it's so much cheaper, frankly though, I don't like the taste of ANY of them!! (love the effect though!)
We all fear it coming back, you're not alone in that. It's overwhelming for you now to finally know what it is and to know there is treatment, hope and other people to talk to but I know how it is, there is still this small voice inside you that thinks - what if they're wrong? What if I don't have CH? I don't seem to have it like this one or that one? You can be full of doubt and fear, I know I was. I can't tell you how many times I went back to the doctor saying I had sinusitus just HOPING antibiotics would shift it. I really didn't want to believe the diagnosis and I just wanted a quick fix which of course - didn't happen!
You will get more confident, as you learn more and get better meds and realise you CAN cope and even more, that when it DOES come back, you can abort it.. you'll stop letting it have that power over you. It sounds very easy for me to say now, I'm sitting here telling you what to do - but I was new to all this and new to ch.com once too and I haven't forgotten exactly how confusing and scary it was and how I felt. I won't tell you I don't fear it sometimes now because I would be telling you a big fat lie but I CAN tell you that I do not think about it in between attacks (my own CH that is -everyone else's is different!! I'm allowed!) For me, the dread sets in when the shadowing starts and I cope by aborting it as soon as I can, whether it be with caffeine or O2.
As for your boss, you are covered under the disabilities at work act with CH so you can't be discriminated against because of it. They will have to count sickness due to CH separately to normal sickness so if ever you do have time off for it, make sure your sicknote is marked accordingly.
I've had CH for almost 15 years. Actually it's since two days after the birth of my second son and I can tell you to the day and minute when I had my first attack too! It was very "memorable" LOL Up to 2004 I was just having cycles every spring and autumn and then I went chronic and have been ever since. One "good" thing about being chronic is you don't fear it coming back at least. I use O2 as my main abortive because I love it, I love how fast it works for me and how little damage it does TO me and it's portable - I can take tanks with me wherever I go.
There are several people here who have had CH cease for them. It is thought that, as you get older, it diminishes so there is a lot of comfort in that. Right now the thought of it continuing for ever is particularly harrowing for you as you don't have effective meds yet, once you do, and it doesn't have such a hold over you - I promise you that it won't be nearly as important! You'll get defiant and you'll take your life back and you'll be damned if you waste a minute you don't have to!
The first time I tried Oxygen - Oh my God!! It worked!! And it worked so fast!! I really had my doubts about it, I couldn't see how just BREATHING could get rid of this AWFUL pain, but it did and I was absolutely euphoric - I wanted to phone all my friends! I wanted to stop people in the street and tell them, it was just so.. so incredible and so empowering. I wish I could bottle that feeling. It's indescribable. Its the best feeling there is. Having an "empty" head is just so wonderful LOL (Anyone else reading this - shut up now, do not say a word! I know where you live and I will flippin' thump you!)
I hope you enjoyed your chinese! I'm hungry now thinking of it but it's only 10:30am now and the rotten git's aren't open yet *pout*
Have a great Sunday
Helen
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