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Posts posted by HazBaz

  1. Mine do tend to fluctuate in intensity during an attack. Climb, remit, climb higher, remit a little, peak then vanish almost completely within 45 mins to an hour.

    But I have had utterly unrelenting attacks that have lasted 3-4 hours. They are, quite simply, the worst thing I have ever endured. I'm sure many can relate.

    My neuro thinks I have migraine now too. Never rains etc etc. my cluster cycle is back, but seems ok for now. Well, as ok as it'll ever be.

  2. Yeas. Very comforting.... He almost said it with a smile on his face as if to say "I think you'll probably say no, but...".

    Always a little disconcerting. But there you go!

    Not had to use the O2 yet. Is it a little weird that I'm actually looking forward to finding out just how effective it is?   ;D

  3. 1. Yes

    2. Yes

    3. Yes, but only after consulting my GP. My Verapamil dose for example has been high and I had to personally trial dose/dosing regimes until I hit the sweet spot. Taking much more than is recommended.

    I never take counter painkillers anymore. Or prescribed ones. Got drawers full of them. Before proper diagnosis I rinsed ibuprofen and paracetamol. Ate them like sweets. Very dangerous. Probably did some damage to my liver/stomach/gut in that time. Glad I don't do that anymore.

  4. :oI get the usual bunged upness... Which gave me a few issues with piles also. But some fibre and a low dose of lactulose at night sorted me out.

    I do have some odd heart rhythms at times.... Feels like double beats. A few palputations. But I've been on verapamil now for three years straight at various doses and those are the only things I've noticed.

    Oh... And tiredness. The drug does make you more sluggish. I have noticeably more pep when I reduce my dose. It's the only thing that makes me wish I could come off it from time to time.

    I do however recognise that verapamil may have made my episodic CH, chronic. As when I try to come off the V my cluster rapidly starts rearing its ugly head so I have to immediately go back on it.

    Still... I'd rather have 10 months pain free and 2 months of moderate discomfort that I have on V... Than the awful 4 months of awful awful pain, 8 months of wondering when the pains coming back cycles that I used to get before being diagnosed.

    Plus, taking the V means I can drink alcohol and sleep. Both things I love to do!!  :D

  5. Maybe we could ask Harry Potter (Daniel Radcliffe) for help with funding?

    He could raise the profile of the illness, treatments and cause substantially as a fellow, celebrity sufferer.

    Although, as a celebrity and a role model for kids of all ages... Not sure he'd put his name to any treatment with the letters LSD, in that order, in any way!

  6. Bit more info for those in the UK. Be sure to get a referral to your local NHS oxygen clinic if you get your O2 through the GP.

    I went, had my O2 levels checked and the O2 nurse added ambulatory cylinders to my 'scrip. So I can have a couple of smaller cylinders with the same mask/flow valve to carry round in the car/holiday/work etc if needed.

    I haven't taken advantage yet as fortunately am still out of cluster. Just the occasional 3/4 shadow headache, usually after a few beers.

    Verapamil dose is down to just 240er/80mg in the morning.

    Neurologist confirmed what I already knew. I have cluster headaches! YAY! Offered to review my treatment every 6 months and keep me informed of any revolutions in that field. Won't hold my breath.

    He did mention DBS and Gamna Knife... I politely declined!

    Am yet to do any botany and try busting for real... But I am young. There's hope yet! And plenty of time/vermiculite left in this ones stores!

    Cheers. HB

  7. Hi all,

    I know it's been a while. Been extremely busy in the background and have had some successes I will share....

    Haven't had an attack since 20/11. So almost a month. Looks like 240er verapamil and an 80 when I get up and when I go to bed have had a positive effect.

    After being told by my doctor that he couldn't prescribe me O2 or SC suma., he got a letter from the neuro saying they couldn't see me, so he did some research using the BASH guidelines, beavered away on my behalf and sorted me a proper CH geared O2 'scrip (big tanks, non rebreather mask, 15lpm flow rate) and some SC suma. pens.

    Then I got a letter from the neuro saying they would see me. Bonus. I can say I'm up for trials of new meds (within reason of course).

    I've also been massing grow kit. Spores. Canning jars. For research purposes only of course. Not botany!   ::)

    Am going to start tapering my verapamil dose down. Maybe after Xmas.

    Haven't had a drink on 6 weeks.... Boring!

  8. Yes. The first place my diagnosis started was at my wisdom teeth. All removing them did was cause me additional pain due to the surgery. And bad rebound headaches from the codeine. What a waste of good teeth.

    Now my no6 molars are crumbling away due to a lack of support and protection on that side.... Should sue the NHS for failing to properly diagnose me and get some porcelain nashers put in instead.  ;D

  9. Hi Toni,

    I did find the site recommended on here. But don't remember where.

    The site is all salvia. Not too pricey and a great deal of the seeds were viable.

    My next focus is on getting a tank. Read my first post (British 5yr ch vet) for my first bust tale! Thanks.

  10. Some advice back... Never have a can of redbull after eating a bowl of cereal with milk for breakfast.

    Thought I was going to throw up. All morning.

    Got to work (after an incredibly dangerous drive, head tilted to one side, hand on head, window open so cold air blowing on my head like a dog). Spent 15 mins there, couple of colleagues told me I looked awful, sent me home.... Another dangerous drive.

    Doctor suggested raising my dose of verapamil to 480mg and that if I needed further treatment I should go to casualty (emergency room for our American friends). Cheers.

    I have quietly sobbed twice today due the pain.

    My seeds and spores have arrived today. Not many seeds for 5g/£25. Methinks it will be an expensive process. But the potential for busting and the benefit that will bring far outweighs the cost.

    I am apprehensive. Should I be? Thinking about just whacking 50 seeds down after a soak and seeing how I get on.

  11. Attacks at 11:30pm, 1:15am, 3:30am so barely any sleep.

    And I've woken up with basically a kip 2-3 headache on my cluster side which seems permanent. It's not shifting. Which is odd.

    Have taken an extra 240 verapamil. And some painkillers as I've got to drive to/be in work in an hour.

    My RC seeds arrived yesterday. They are at the post office. Gonna collect them and have a go tonight. I can't go on like this....

    Any advice on how to shift this 'mild' headache? And survive the day?

  12. It took a doctor who suffered from migraines to diagnose me correctly. But really, I self-diagnosed and she agreed with my diagnosis. Prescribed me verapamil, told me to lay off booze, within two days the CHs were under control. At least, for a while.

    Before that id been prescribed some pretty awful sh*t. Amitryptaline, carbamazepine, tramadol, codeine.... All to no effect.

    A doctor told me it wasn't medical... And sent me to a dentist who told me I needed my wisdom teeth on my affected side out and two molars top and bottom (what a waste of good teeth....). That will coat me a fortune in the future... Implants and the like.

    Despite the prevalence of CH being the same as MS in the population, and for some it is just as disabling, there's a real lack of funding and awareness of it.

    Mysteries of the brain eh? Mysteries of the brain...

  13. I wouldn't call myself a perfectionist... But I am meticulous to a fault.

    I am also a little OCD about washing hands and the like. But I think that might just be my age.

    Never been a particularly good sleeper. Never had a rigid sleeping pattern. Even when I was a kid.

  14. It's strange. I've just quit smoking (come off patches after 12 weeks) and my cycle starting almost correlated with that.

    I've also had some puffs on an e-cig which seemed to trigger an attack (glycerin in the liquid being converted somehow in the body to nitroglycerine maybe?)

    However, no attacks (or the very occasional severe CH) when on the patches for an extended duration of time. But the summer I was diagnosed (2012), the patches may have been the reason for the severity of my CH that year.

    With me, the nicotine/smoking correlation is hard to discern.

  15. Hi CHFath. Thanks for the reply. Unfortunately melatonin is not available over the counter in the UK. It's a 'scrip only drug. Ridiculous really... But there you go.

    I will have a search for the energy shot drink post in a min. I haven't been hit for a couple of days... But the shadows are there.

    Does the interaction only matter when you have vit D w/ calcium supplements? I have pure vit. D. Doesn't seem to have any calcium in it.


  16. Mine are back with a vengeance. Literally days after our clocks went back signalling the autumn/winter switchover.

    Triggers this past week: beer. mothball smell from a blanket (solvents and nasty), a puff (or ten) from an e-cig (nicotine? Or is the glycerin in the fluid somehow being converted into nitroglycerine?). Stress. Oversleeping. Under-sleeping

    Had full bore shadows these past two days. Plenty of caffeine, water, D3 and ginger plus a whopper of verapamil is keeping me ticking over. No doubt get woken up an hour after getting to sleep tonight... Wish me luck.  :o

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