So, Hi everyone (again).

My first bout of headaches in 5 years started last Tuesday.  I have been working from home since as I don't feel comfortable dealing with an attack in a busy office.

Not only did the beast return, but to make things even more fun, I had an abscess develop in one of my front teeth that gave me "pain", this actually made me laugh as toothache was child's play! But alas the abscess infection kicked off a fever for 2 days.  This came with fever style headaches and made it very difficult to spot an oncoming attack in time to take medication.

The doctor gave me Sumatriptan again, tablet form and he splashed out big time and prescribed a huge amount... 6 of them.  So 2 days later when I started rationing them and sitting through a few headaches without I phoned him to give him a piece of my mind, but a new female doctor spoke to me and prescibed a much better amount of "melt in the mouth" equivalents.  Which are now running out again.

Like Sumatriptan they have about a 50% success rate at aborting an attack.  I expect a lot of this variance is due to getting them into your system in time.

It started with an attack at 2am and one at 9pm.  I probably should have gone into work, but by the time the fever was over the headaches had amped up to a LONG one every morning starting at 5am and coming and going until 11am with varying levels of pain mostly due to meds wearing off and having to repeat them. 

Currently I am woken at 5am light clockwork and have considered setting an alarm for 4:30 and taking medications.  Another one (or the same one returning from under the meds) at 9am.  Another early afternoon around 3pm and another at 9pm at night.  The medication has a 2 per day limit, which I remove the "engineering grace" from and go for 3 a day limit, so end up treating the later ones with nothing but pain killers.

Happily, when the meds don't abort an attack, this episode is responding to Neurophen Plus (ibruphen + codeine) for the most part, though they may be the cause of the prolonged headaches and "shadow" headaches.  A shadow headache is what I call it when the attack is not aborted, but just halted in it's escalation before it gets extreme, but the feeling of an impending attack with mild symptoms lasts for hours.

The worst ones are the ones that wake me up.  I am very hard to get out of bed until I have my 8 hours, so I was fighting the pain desparately trying to get back to sleep without realising this was foolish.  So by the time I surrendered and got up, the attack was in full swing.  Horrible way to wake up at any time of day.  Now I force myself out of bed and to the medication cabinet as soon as it first wakes me.

Medications aside the best mechanism I have for dealing with these is distraction.  I think this is the cause of so many bizarre things that people say helps them.  I believe a lot of them are just placebo forms of distraction.  Sure distraction works, but to a point, when a wave of pain spikes sometimes there is no way to distract yourself from it.  This is the time I either pace the room, rock and hold my head in hands or try the opposite of distraction, focusing and mediatating on the pain, trying to embrace it, manipulate it, isolate it, surround it, move it, change it, reduce it.  I can only hold out so long and these attempts can collapse in a series of expletives and cries.

One thing I love and this is something only a cluster headache sufferer could say, is the tiny little drop-outs of pain that come sometimes in the middle of an attack.  When the pain drops away for a few moments, 30 seconds maybe, I love it not just for the lack of pain, but for the little burst of andorphens the body releases that make me feel pleasure.  I use these to keep from getting too stressed/depressed during an attack, by trying to remind myself there might be a little drop out soon.... hopefully and I can sigh, relax, wide my eye, wipe and sniffle my nose and prepare for the next wave.

Here's to hoping this episode doesn't last much longer and here is to hoping that I will get another 5 years or more remission again.

My thoughts are with my fellow suffers, chin up folks.

Paul

Welcome back, there is a newest "latest and greatest" for CH:

Follow this link to the medications section of this board and read the post 


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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 4 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


If you follow the boards the success stories with D-3 are just phenomenal, please consider giving it a shot.

Joe

Hi,
Guiseppi has given you brilliant advice, so please give it a go. 

Sumatriptan in tablet form are pretty useless as you have already discovered they take too long to get into your system. The auto injections on the other hand are fantastic and have never failed me. They will abort the worst CH in 5-7 minutes. I NEVER leave home without them. You can only use 2 per day but there is a clip on youtube that shows how to split them to get 4 doses. If your doc will prescibe it, let me know if you want to do that and I'll find it for you.

Another thing to consider is Oxygen. My new best friend. Your doctor can arrange it for you but (this is important) , you need a high flow rate of 15 - 20 litres per minute, with a non re-breather mask. Get either of those wrong and it won't work, but get it right and it will also abort a big one in about 10 minutes. The high flow acts as a vasoconstrictor,(as does sumatriptan) and takes the pressure off the trigeminal nerve. The mask prevents ordinary air from getting in which keeps the oxygen pure. I keep my oxygen by the bed for any time I'm at home, and save the precious suma for when I'm out. Sorted! :D

My doc borked at O2, saying he had never prescribed it for anything before and would not be comfortable doing so.

I do have private medical insurance and 'can' force my docs hand by asking to see a consultant, upon which time I can get my BUPA cover to find a good one privately.

The trouble is, I'm changing jobs in a matter or weeks and will lose my medical insurance for a time and don't want any consultant bills.

Welder's oxygen works the same, if you have a welding supply shop near you.  You can buy regulators and masks on line.  I can almost guarantee it will help reduce your amount of pain time greatly.

My doc borked at O2, saying he had never prescribed it for anything before and would not be comfortable doing so.

A doctor that doesn't feel comfortable with oxygen! Crikey! Where did he get his qualification.  [smiley=JAW_DROP.gif] Oxygen is not a drug, we breathe it all our lives and it is singularly the least likely thing on earth to do you any harm. Far safer than any medicine he could give you. If you are unlucky enough to find yourself in A&E for ANY reason, a sore toe even, the first thing they do is stick a mask on your face.

I don't know what it costs but he's probably more worried about his budget than his patient. He's denying you the simplest treatment which would give you the most relief. It's a good job this thing is in your head and not your lungs. I wouldn't wish CH on anyone, but here is a man who would benefit greatly from 30 minutes of K10. He'd soon reach for the 02 then! If I were you I'd be looking for a new doctor.

In the mean time ask for the injections, tell him to do some research and press him for 02. Nag if you have to till he gives in or ask to see the new lady doctor you spoke of. You are absolutely entitled to be treated correctly.

We're all rooting for you on this. Please come back and let us know how you get on.
Maz.

Good call on welders 0xygen...it's just as pure as medical, if the oxygen in welds isn't pure the welds fail and airplanes fall out of the sky! :o

This link will show you how to get set up with welding oxygen:

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Joe

Make it easy for your GP as OUCH UK have all the NHS forms (the HOOF form) on their website, partially filled in along with instructions for your GP as to what they need to do.

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If your GP is worried about his budget point out that you'll not be breathing oxygen 24 hours a day (from cylinders that is) but more likely for 5-10 minutes or so per CH. This works out a lot, lot cheaper than using most other abortives, especially compared to the cost of sumitriptan injections.

Can't say how many times I've been "back" to this site and  after a two or three year sabbatical. Five years is definitely a good break.

Hey Paulca,

Send your neurologist the following link or print it out and take it to him so he can join the 21st Century of neurology with respect to the standards of care recommended treatments (abortives and preventatives) for cluster headache and other trigeminal autonomic cephalagias... 

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This standard of care for CH was developed by a task force from the European Federation of Neurological Societies (EFNS).  The task force is comprised of a "Who's Who" list of eminent experts in neurology when it comes to treating patients with cluster headache.  I've met with three of them and they really do know how to treat this disorder...

If you check the table mid way through this link you'll see oxygen therapy is at the top of the list as the first abortive of choice...

I've also attached the HOOF you'll need there for the NHS to obtain Home Oxygen Therapy...  If your neurologist is still suffering from anal leakage over prescribing home oxygen therapy... or he has a broken hand and is unable to sign the HOOF... Take it to your PCP...

When you do see your doc... ask for the lab test for 25(OH)D...   That's the serum level metabolite of vitamin D3...  The normal reference range for 25(OH)D is 30 to 100 ng/mL, (75 to 250 nmol/L)... You're very likely vitamin D3 deficient and that deficiency is also likely contributing to the frequency and severity of your CH.

See the following link for more details on the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3:

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Take care and please keep us posted,

V/R, Batch

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You guys on this board are absolutely fantastic,a guy posts and within 12 hours he has all the relevant info to abort and prevent on the cheap,and has a solid 80% chance of going PF again. All of this without even a consultation with a doctor,Im sure he could get the welders gas delivered and hopefully find all of the D3 components in a short trip to the druggist,then order his regulator and mask online.