I apologise if I should have posted in the new members section first, but I'm at my wits end and I need to know if anyone can suggest anything.

I'm a chronic sufferer and I have been for the last year. In 64 weeks, I have only had 4 weeks in remission. I have 6 attacks a day. 6:30am, 11:00am, 4pm, 10:30pm, 1:30am, 3:30am.

Due to this, I never sleep for more than a couple of hours at a time. I am constantly exhausted. Unsurprisingly, I have been referred to counseller for therapy. Depression, of course.

In short. I am unable to work. I have no qualifications of any real merit and the job market is so thin right now that my prospects are nullified due to the amount of sick leave I had to take in my former job. (Was fired due to the amount of time I had off sick)

Is there anything that anyone can suggest I could do to help me? I'm from the UK, but ironically enough, I can't use the UK version of the forums because I don't have the money to donate.

I've tried applying for benefits, but they turned me down stating I'm not "ill enough". I can't even get a hold of a part-time job, though I find myself fearing the prospect of even a couple of hours a day due to my constant exhaustion.

Apologies if I've rambled.

The only treatment I am on at the moment is Propanalol 150mg.

Heya,

first of all I'm very sorry to read about what you're going through.

You say you're chronic but that the only treatment you're currently on is propanalol. Have you tried anything else before?

A lot of people here use Oxygen as an abortive method and that seems to work really well for many people. I haven't tried so far but I'm going to look into it during my next visit with my new neurologist.

Have you tried medication such as imitrex, topamax, verapamil before?

I'm not chronic but during a cycle I have difficulties not taking sick leave either. I can't help you with the medication as I'm still trying to figure things out for myself but maybe if you can let us know what you've tried before I'm sure there are many people here who can advise you to try or discuss certain abortives/preventatives with your neurologist.

I hope you'll get some relief soon!
My thoughts are with you!

Hey there, zopiclone, and Greetings! It's OK to be a Brit, or an Aussie, or even an Italian mut like me on this site. All are welcome. I am so sorry about your situation. Your posted attack times correspond exactly to my own. So I can tell you as one chronic to another, when I am attacked I will try and pray for all of us, especially for you at those moments.

Yes, do read the O2 and imitrex links at the left. And look into both energy drinks (80 mg caffeine/1000mg taurine) as well as melatonin (9-18mg daily at night. The energy drinks can help as an abortive along with the O2. Also, many of us have had great success/some success with verapamil and lithium as a preventative.

Having said all of that, I wonder if even the cost of these may be prohibitive? I'm not up on medical relief in the UK, but we have several on this site who might know. Check out Nigel (headacheboyUK). I'm sure he'd talk with you.

Keep us informed, give us some more info, and know you are upheld in thoughts and prayers. Blessings! lance

Sympathy is cheap grace but about the only thing that folks, being outsiders to your health care system, can offer.


This mixture of messages from a couple of members in GB may give you some leads:




Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

You need to find a doctor that knows how to treat these things.

You need a good preventative treatment plan (verapamil, lithium, depakote, etc.), a good abortive strategy (oxygen and/or sumatriptan), and something to help you get a decent night's sleep (melatonin). Also, you might want to check out clusterbusters.com.

Won't help with your sleeplessness, but try slamming an energy drink that contains both caffeine (at least as much caffeine as a strong cup of coffee) and taurine (1,000mg) at the very onset.

There are ways to keep this thing at bay and keep your job.

What Brew said. You need to find a doc knowledgeable in CH treatment, or one who will listen to the info you bring them. I worked for 30 years with these damned things by having an effective prevent, for me Lithium, and keeping oxygen close at hand for the break thru attacks.

We say it a lot here but sitting down in front of a doc and saying "fix me" is a recipe for years of pain. It's incumbent on you to educate yourself and work WITH your doc to tame the beast. We'll help you all we can.

Joe

You've heard from the best, so I'll not try to expand on it other than to say you CAN do it once you've learned how to manage them.  Getting control of our situation is the hard part, but once you have learned to control them you can adapt and work out the work situation.  I don't say it is easy, but you can do it.

Jerry, another chronic

Hello Zopiclone

There's quite a lot of us Brits on this board so no need to apologize you are very welcome .

What is being said about energy drinks is good advise Red Bull really helps me with shadows although I've not tried it with a full on attack yet but others on this board have managed to abort low level attacks and reduce stronger ones with these .

I know red bull is expensive but it is about the only one I can drink because I don't tolerate artificial sweeteners , if this is not a problem for you sainsbury's and asda do there own brands , I think one is called blue bolt and comes in liter bottles for less than the price of a can of red bull and they have the required amounts of caffeine and tuarin . I find 350 ml is enough in one go .

The other thing that I can think of that might help , did you know that you can now get a pre pay card for your prescriptions , I had one about half way through my first and only cycle so far , if I remember rightly it cost £28.00 and covered all your prescriptions for three months , it saved me about £100 in prescription charges. they also do longer ones which cost more but the saving is also grater , ask your pharmacist about it and they'll tell you how to sort it out.

The London Migraine clinic looks like a good place to goto if you are having trouble with doctors but they do ask for a donation , suggested £100 but it's not compulsory could be worth a look.

other than that try clusterbusters , link to the left , allot of real good stuff going on there it could be just the thing for you if you don't mind stretching the law a little .

any way , really hope your luck changes soon . You are in my prayers .

God bless

Nigel

I liked Dr Mike Hanna (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) at UCLH. He is (I believe) part of Dr Goadsby's team (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) and therefore might be easier to get an appointment with that Dr Goadsby himself. I was able to get O2 and methysergide for my CH, which of course is covered by the NHS.

You may also want to look at: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE regarding your employment rights...."Your employer cannot select you for redundancy because you are disabled or for any reason relating to your disability. If your employer is consulting about any future redundancies, they should take reasonable steps to make sure you are included in the consultations."... where 'disabled' is defined as "The Disability Discrimination Act (DDA) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities."

Thanks a lot for all the helpful replies, everyone.

I've not really thought about coming online for a while, I spend most of my day sleeping or having headaches now. Work's the least of my worries, at least!

Red bull, or "Red Rooster" from the Co-op does have some benefits, I must admit. The biggest one for me is that it simply peps me up for an attack, makes me a little more alert and ready for it (if that's even possible.)

I will be buying a pre-payment card very soon. My neurologist has put me on Verapamil for now, which is definitely a step in the right direction. Those links all look very interesting, I'll read through them all at some point. My concentration is shot!

Another Neuro appointment on the 7th, so I'll see how things go.

Thanks a lot for all the replies, everyone. I really appreciate it.

Dave.

Edit: I actually just recently applied for Employment Support, I'll have to see how that goes, if they ever get back to me. I'm already down 3 months in SSP.

I don't know anything about disability in the UK, but as someone who's tackled that monster here, you're in my thoughts and prayers.

Katy

And if the traditional meds fail you....please do look into   clusterbusters.com         we've seen some pretty amazing success stories from people who had not found success any where else.

Joe