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Topic: Uk disabilty (Read 438 times) |
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southwalessunshine
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Uk disabilty
« on: Aug 28th, 2007, 11:09am » |
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Has anyone here gotten themselves registered as disabled in the Uk with CH? I have read that some of you have and I recently applied for DLA. However, I failed the application on care component grounds. I am gonna go see someone down the job centre to register on the sick, but I'm not sure what else to do. Ican't work right nowas I'm getting hit every day constantly. Any advice would be greatfully recieved.
Also I've heard of a pred taper being mentioned in here. Could someone please explain what this is and what it's for. Thanks in advance
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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Bob_Johnson
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Re: Uk disabilty
« Reply #1 on: Aug 28th, 2007, 11:24am » |
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Suggest you put this question to the UK OUCH group:
http://www.ouchuk.org
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Bob Johnson
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southwalessunshine
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Re: Uk disabilty
« Reply #2 on: Aug 28th, 2007, 12:07pm » |
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Why didn't I think of that?
Thanx for the advice, i just fired off an email to them a moment ago.
Thanx again
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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michael
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Re: Uk disabilty
« Reply #3 on: Aug 28th, 2007, 2:07pm » |
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A pred taper is prednisone (steroid) pills that can knock out attacks. You start taking a course of them and slowly taper off them over a couple of weeks while you build up a preventative like verapimil in your system. The taper is because you cannot use prednisone over a prolonged period.
Mike
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| « Last Edit: Aug 29th, 2007, 7:46am by michael » |
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dragonlady
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Re: Uk disabilty
« Reply #4 on: Aug 29th, 2007, 2:33pm » |
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Hi southwalessunshine
Check your mailbox!
Val
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2late
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Re: Uk disabilty
« Reply #5 on: Aug 29th, 2007, 5:31pm » |
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it sounds like your getting crushed 24/7...tell us about the meds your on, the meds you've tried and whats next on your neuro's plan of attack,you really should get some kind of relief.........fire away
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southwalessunshine
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Re: Uk disabilty
« Reply #6 on: Sep 2nd, 2007, 3:48pm » |
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It's coming on 11 weeks now. I'm shadowing constantly and get the beast at least once a day. I've tried 02 for a week and don't seem to be getting any relief from it, but I'm also concerned that I'm doing something wrong. don't see how that can be as it is pretty straight forward, i guess I'm just scared that I'm one of the unlucky ones who it doesn't work for. I was kinda pinning all my hopes on it.
In the past i tried maxalt and another rizatriptan as abortives but over time they just stopped working. i have tried 3 prevents over the yrs but I can only remember one of them, that's the last one amiltriptaline. They didn't make any difference at all and i just gained a pile of weight. I saw a neuro back in May and he took me off the prevents. However I didn't fully understand CH at that time and didn't understand the difference between shadows and the beast, etc. But I lost confidence in him because I feel now with hindsight that he didn't ask the right questions or delve into my condition enough to make a proper diagnosis. He did tell me to think about anti epilepsy drugs as a prevent and left it at that. So when i go back i will be more aware of my condition, also my cycle has changed dramatically since then.
The meds he put me on are diclofenac for mildish shadows, which sometimes works, but i've realised that if the shadows are going to turn into the beast nothing I take except the injections will work. I have sumatriptan (Imitrex) tablets for mid pain and the jabs for the killer headaches. My GP got me 02 but as i said I'm not sure it's working.
The other thing I'm unsure about is this....At the mo I'mnot getting many beast hits that start at kip 8 ish that needme to inject right away, so i'm kind of going up in stages. i start with either red bull or 02 then a little while later if it's not gone i take the diclofenac, then I take the sumatriptan pills then the injections. i'm really worried that that's a whole lot of meds to take when none of it's working, but I kinda have to go through all options. This is worrying me because it's a prime case for rebound headaches. I've been so down and scared of the hits that the last 4 times I took 02 and when it didn't work i let it go up to kip 4 then just injected straight away. My logic was that it may or may not turn into the beast but it's kind of accepted it will. So I cut out all the other meds and just went to the one I know works. Is this acceptable? I'm hung up on the fact that the doc said I must take the meds in the order he said as I shouldn't inject for a low grade headache. But I'm at my wits end. my life is spent at home because I'm scared to go out incase i get hit, I spend most of my time waiting for meds to work that inevitably won't work , and I'm scared I'm doing it all wrong.
Add-on- also i can only get a box of the injections with 2 jabs in at a time. I then have to put in a repeat form and that takes 2 days. I had to take 2 jabs in 1 day for the first time 2 days ago,so all my jabs were gone in one go, but when i went to the emergency GP he gave me a huge lecture about rebound headaches and how my meds had to be looked at and maybe reduced. AAAGGGHHH!!!! Don't do that to me! sheer panic set in.
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| « Last Edit: Sep 2nd, 2007, 4:06pm by southwalessunshine » |
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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DennisM1045
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Re: Uk disabilty
« Reply #7 on: Sep 3rd, 2007, 8:53am » |
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I can't speak to the other meds the Dr had you on. But I will say that shadows can be very persistent. I can usually kill them with a Rock Star or two but not always. It will at least bring the pain level down to something managable.
On the O2 front, how high will your regulator go? If you can, push it up to 20lpm and try that. O2 doesn't typically chase shadows away but it too will bring the pain level down too. It works best on the beast for me.
What type of mask do you have? If its a non-rebreather, do both holes in the mask have butterfly valves installed? Are they making a good seal? If not, trying holding them down with your thumb and index fingers. If that doesn't work, tape them up and lift the mask to exhale.
Are you breathing at the right rate? I wasn't doing this in the beginning and it made a huge difference in the effectivness of the O2 therapy when I started doing it right. Read through the OUCH O2 guide: 1-7 What Tips and Techniques Work Best When Using O2? ...... 30. There is a great description of how to breath and the guide contains good info on why effective. Here is a link to the US version: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf Print it out and read the who thing!
I'm sorry you continue to get hit to hard. Wishing you PFDAN soon!
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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michael
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Re: Uk disabilty
« Reply #8 on: Sep 3rd, 2007, 11:30am » |
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The NHS allows up to 8 injections on a prescription.
I used to only get 4 till my doctor got fed up with seeing me.
Mike
BTW I wouldn't recommend an injection after a pill for the same headache. Thats alot of tryptan.
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| « Last Edit: Sep 3rd, 2007, 11:32am by michael » |
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southwalessunshine
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Re: Uk disabilty
« Reply #9 on: Sep 3rd, 2007, 11:55am » |
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I was worried about the rate I'm breathing with the 02 and even posted about it, so the advice on breathing on Ouch is great. Thanks dennis.
Michael, I'm glad to hear that I can ask for more. 8 would be a help. it comes to something when all the receptionists at the docs know me by name and book me in when they see me walking up the street.
I think it's a lot of triptan too, but it's what my neuro said, so until i see him I'm gonna just use the injections.
I'm wondering if I'm confusing shadows with low pain CH's? The shadows are getting up to about 3 or 4 on the kip scale, and last pretty much all day. Am I getting low Ch or could these be shadows? Or are they the same thing?
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| « Last Edit: Sep 3rd, 2007, 12:05pm by southwalessunshine » |
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keep your face to the sunshine and you will never see the shadow.
Alone we can do so little, together we can do so much.
Walking with a friend in the dark is better than walking alone in the light.
Helen keller
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michael
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Re: Uk disabilty
« Reply #10 on: Sep 3rd, 2007, 2:37pm » |
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I never really got shadowing with CH years ago. I used to get my cycle with regular CH and then it would leave and I would be pain free till the next time.
About 8 years ago I started using the imigran injections and eventually persuaded my doc to give me a constant supply. I must admit I used an awful lot. I think about 80 for my first cycle with them. I have been using them for each cycle ever since. About 4 years ago the frequency of attacks increased significantly during a cycle and I now get regular shadows (almost everyday) between cycles that will last most of the day if I do not take an imigran pill. So of cause I do.
I am convinced that all this has been caused by to much sumatriptan (although my neuro recons not) hence my warning to you.
PF wishes
Mike
BTW my shadows get up to about 3.5 - They must be related in some way to a CH because an imigran pill will take them away, but I wouldn't call them a CH.
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| « Last Edit: Sep 3rd, 2007, 2:42pm by michael » |
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dragonlady
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Re: Uk disabilty
« Reply #11 on: Sep 9th, 2007, 5:02am » |
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A slight correction there Michael, I get 12 Imigran at a time per prescription and I know another CHer in the UK who just names the quantity he wants.
I have been in Imigran (Imitrex) injections for over five years now, using them on a virtually daily basis. Imigran has a half life in the body of about four to five hours. The time gap between my attacks can be as much as 36 hours, and given the number of years I have been using it, if I were going to get rebound, the attacks would be much closer together and much more frequent than they are. I would bet that your GP is jumping up and down more because of the cost of the Imi jabs, than the potential to cause rebound. Talk to your PCT (Primary Care Trust) prescriptions adviser and explaing the difficulty you are having getting the only licensed abortive for cluster headache that is listed in the BNF (British National Formulary - GP's prescribing bible). Also back it up by asking your neuro to confirm in writing to your GP that you should have the Imigran injections as needed, but not exceeding the 2 per 24 hours dosage.
You have my e-mail, give me a shout if I can help more.
I know that oxygen information has been sent to "sunshine".
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