Jump to content

Hello from New Member. Sharing Cure Stories.


Recommended Posts

Hello! First of all I'd like to thank all my fellow (and fellowess) cluster headache sufferers for sharing your experiences with the world at large, and with me in particular, via this valuable resource.

Having been an annual visitor to this website for... I forget how long, I thought I'd finally join the club. Mostly because I'd like to contribute something in return for all the help you've given me. Party just so I can SCREAM in public, knowing that you'll all offer sympathy.

Every year I think I've cracked it, and every year I find myself surfing this website as well as Google Scholar and every half-baked 'health' site for the elusive 'soma'.

Yesterday morning, having awoken to this years attack (following a few weeks of shadowy threats), I took myself to the local hospital to try oxygen therapy. I was left in a room on high-flow oxygen for around 25 minutes, which seemed to help. Though by the time I'd got to the hospital I'd already managed to get the pain under control using high strength cocodamol, so it's hard to say whether the oxygen did anything more than leave me talking at the doctor at a solid 100mph and feeling as though I should sprint the 8 miles back home.

Ideally I wanted to see a doctor and get a can to take away so that I could try it at the onset of an attack. Sadly, here in the UK at least, it is a somewhat more complicated procedure than I had imagined. It simply wasn't possible for them to prescribe at the hospital and I was told to see my GP.

Within half an hour of arriving home - Bang! Attack number 3 of the day kicked in. I phoned my GP and managed to get a phone consultation booked for later today. Then I looked online for the prescription protocol and it doesn't look too hopeful. Seems I will have to undergo assessment prior to an engineer coming to my home to show me how to use it! With the weekend upon us, I doubt I'll get any relief from oxygen before the middle of next week. By which time I hope to be at least half way through my annual cycle.

Doom and gloom followed this news and I resigned myself to the agony. I know that cocodomol isn't good for cluster headache but it numbs the pain in the now, even though I know it will be back even stronger later. So I take it, crash out for a few hours, wake up in agony and take some more. This has been my ritual for over 10 years. At the end of my cluster cycle (roughly 10 days with the usual feeling you've been hit with a cricket bat for another 10) I am left groggy, constipated and suffering mild withdrawal.

I've tried turmeric, hot pepper, black pepper, basil, oregano, ginger, garlic, weed, LSD (not sure it was the 'good' stuff), strong coffee, massage, meditation, cold compress, hot compress, mind music, whale music, walking, running, rocking and standing on my head. Some with mildly possitive effects - the weed did help one year when eaten in small quantities. Mostly nothing touches the sides so to speak.

So last night I read an article on this site about water. I've tried it before, but probably not with my heart in it. This time I went away and drank two pints over the course of half an hour then went to bed. Within an hour of getting to sleep... ouch! So I lean over to my glass, swig another pint, close my eyes and hope... Hmm, a little lessening of pain and back to sleep. Two hours later... ouch!! Get up, go to bathroom, fill glass, drink roughly two pints and take a pee that could have come from a racehorse! A small price to pay if it helps. Again, it did. At around 6am AGONY! This time I cheated - took cocodomol and drank another pint of water. Slept right through to 9am and awoke without a headache! That has never happened before at this point in my annual cluster cycle. So I took another long drink of water and have been sticking to a regulat pint since then. As yet, at 11.30am, I feel only a shadow.

It's too early to be certain, but the water method seems to be working. Maybe it's just this years 'fix'. I intend to stick to it for the next week and will report back. I'll try the same again next year.

Anyway, at the risk of this becomming a novel, I'll sign off for now.

Thanks again Team Cluster. Wishing you all the best, Paul.

Link to comment
Share on other sites

Welcome Cluster. It sounds like you have really tried a lot of 'natural' treatments over the years!!

O2 will be your best friend when you get it. My understanding is that OUCH-UK can be a huge help getting you O2 in the UK. Also, when you get it, there is a wonderful page on O2 use located in the menu bar on the left of this page.

I know that a lot of people on the Clusterheadache site have tried the water like you are doing now. Some with great success too!! I am really glad that it is helping you now.  :)

Many here have searched all over the Net for help, so we understand the read, read, read approach. What is cocodomal? I am not familiar with that med.



Link to comment
Share on other sites

Thanks for the advice guys.

Have spoken to my doctor and he said he has to refer me to a neurologist in order to prescribe oxygen. I've asked him to do this even though, by the time the prescription comes, I'll most likely be recovering from this years cluster episode. Meanwhile the doctor has prescribed sumatriptan nasal spray - might try that even if there are side-effects.

Spiny, co-codamol is codeine phosphate. I take a brand with paracetamol and caffeine added and which is dissoved in water. The opiate knocks me out but it does help a little in the short term.

Thanks for the heads-up re water J. I'm taking it a little easier after what you told me! 48 hours now and I'm drinking a pint at the onset of an attack and keeping well hydrated in the meantime. Certainly seems to be taking the edge off and reducing the number of attacks. Only taken 6 painkillers in two days, which is a fraction of what I'd usually have to take. Last year I'd say it was 10/10 pain. This year more like 5/10.

I've had a theory about the water and the oxygen methods and intend to scour the Google Scholar pages to see if there's anything to back it up. Will keep in touch...

Have any of you tried the water method btw?

Cheers, Paul.

Link to comment
Share on other sites

You can down some electrolytes to avoid depleting your body.

Also, downing some caffeine at the first sign of an attack can stop the hit. Many use energy drinks and some use coffee. The taurine in energy drinks is felt to add to the effectiveness of caffeine. But, if you can't stomach them, coffee works great. Anything that helps you avoid the codeine. Likely it is the caffeine in your med that is helping the most, not the codeine.

Link to comment
Share on other sites

You just need a good GP. The GP you have is either not informed/lying about not being able to prescribe O2.

Bottom link in the OUCH FAQs: https://ouchuk.org/faq#n84

Mine didn't even know he could prescribe O2, until I showed him the info from CB/OUCH that said he could.

It was rapid from HOOF sent off to O2 delivery for me. No more than 5 days. I know that's ages when in pain, but once you have it, depending on supplier, you should be able to get refilled tanks within 12/24 hours. Just keep an eye on the gauge and preempt needing to order.

Some GPs are strangely resistant. Probably a cost/risk/benefit thing. But some are very understanding.

Once you have a 'scrip ask to be assessed by an O2 nurse and get the GP to refer you to an oxygen clinic. Then you can ask the nurse for ambulatory cylinders to carry with you in the car/work.

Keep pressing the GP. Go as often as possible and inform them that your quality of life is minimal. Keep asking for O2. Provide as much info. as you can (some docs know very little about cluster headaches). Good luck. You'll get it eventually.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Create New...