Hello fellow CHers. I'm a 46 year old man from Basingstoke currently about 2 weeks into my spring cycle.  I drink a little, smoke a little and quite often enjoy a good "Jazz" cigarette.  I've been suffering CH for about 5 years now, have had an MRI and seen an eminent neurologist, tried Sumatriptan, Zolmig (tablets and nasal sprays)(or whatever it's called), Amitriptyline, Propanalol and Verapamil (but not at the same time!).  I can't be bothered with any of it any more. The Sumatriptan sprays used to work very well but gradually became less effective and also too expensive at 3 for about £8 when you get an average 3 attacks per day.  Zomig worked too if not quite so well as the Sumatriptan and I got twice as many per prescription, but eventually that too lost it's effectiveness.  Time Release Propranalol was quite effective for a while but they really made me drowsy all the time.  I also grew my own magic mushrooms convinced they were going to be "The cure" - they weren't.  They did help with the headaches, but didn't break my cycle and I would have had to keep upping the dose to keep them effective. (I did with tripping in my 20's).

I've been scouring this and another forum for years looking for answers. TBH, I only tend to start spending a lot of time on these pages when I'm in the season. When I'm PF, I forget all about this condition.  I feel I have had some useful tips from here in the past for which I'm incredibly thankful to everyone here.  When I discovered the Red Bull cure, it worked really well for me. I would always have a good stock of cheap energy drinks (for they work as well as Red Bull).  Personally, I don't believe the Taurine does anything just the caffeine but I could be wrong.  A lot of people say analgesics are ineffective but I find them useful.  This was one reason I stopped the energy drinks, they would sometimes make me chuck up my pills.  If I have an attack these days, I can usually abort it by making a strong instant coffee (4 teaspoons in half a mug of water) and taking either 3 or 4 Ibuprofen and maybe 2 or 3 Solpadine Max Soluble.  Those cold cans of espresso are good too and easier to hold down than the Red Bull when chugging a can in one. I do feel however though that the heat from the hot coffee helps make whatever pills I'm taking work faster.  Sometimes after just a sip or two of the strong coffee the pain will start to clear. 

Whilst in season, I refuse to alter my lifestyle as much as possible. It all depends how I feel and how much of a shadow I'm feeling as to whether I'll risk a pint of ale, a glass of red wine or a dram of whisky. It's weird, but I occasionally get mini remissions for a day or two.  Other times, I can have a couple of drinks one night with no HA, then the next day, I can go from K0 to K7 within a minute of taking a sip of alcohol. (I'll not bow to terrorism!) 

Most of the time, I can do something to hasten the retreat of The Beast. Sometimes though, he is too strong and even Coffee and Pills can't help.

When this first started 5 odd years ago, I kept a HA diary for a while listing times of HA, pain levels, duration and also  details of food and drink. I was looking for a link and for a while I thought I had it pinned down to Tyramine. The Beast proved me wrong however by making a mockery of my data collection and analysis.  I also suspected smoking and caffeine withdrawal but was also able to rule these suspects out. It soon became apparent to me that I there was a cause, I couldn't find it and so I stopped logging everything.

I have only just discovered and am now 2 days into Batch's D3 regimen.  I am encouraged by early results.  I've had a few hits, some triggered by alcohol but they have only reached about K5 and I have been able to abort them relatively quickly with the usual method.  I don't have everything on the list yet but it seems to me from reading here that  D3 and Magnesium are probably the most important.  So far I have:

Nutri Advance D3 5000 of which I'm taking 15,000-20,000 IU a day for the first week dropping to 10,000 next week.

I decided not to get any Calcium as I've been told by my GP that if I take calcium supplements whilst using high doses of D3, it is quite likely to cause Hypercalcemia.  I also read somewhere that CHers tend to be low in Magnesium and high in Calcium. Have I got this wrong?

I have got the K2 or B50 yet either but I'm also taking the following.

H&B Omega 3 fish oil 1200mg gelcaps (360mg Active EPA/DHA)  (2 a day first week dropping to 1 next week) Would Red Krill be any good?

etixx Magnesium Absorption+ (400mg effervescent  - 3 a day 1st week reducing to 2 then i - also contains a little Vit C and Citric Acid.  I've woken up a few times with calf and toe cramp recently so that fits with the low magnesium theory.

H&B Selenium plus Zinc
H&B Boron

I've also thrown some Solgar 5-HTP into the mix. I do feel that gut Seratonin has something to do with this mystery. It's funny that puking when the pain and nausea gets really intense seems to usher in the end of the attack. I've read on here that other sufferers also welcome being sick as they know then that relief is in sight. Speaking of which, isn't that moment Euphoric, even as the pain is sometimes still retreating. Sometimes, after a headache vanishes I feel almost post coital and feel like the endorphins are swimming about my brain.  It's a really bitch though when you get visited 3 or 4 times throughout the night. Contrary to what many report, I have fallen asleep with headaches before. Either that or I've become unconscious. 

Now with the greatest respect, I realise that everyone is different, but I would like to take slight issue with the Cluster Quiz. I answered NO for all 1 to 8 except for 4 and 8.  I do get very photophobic at around KIP 8 and above. At it's worst even the lights inside my mind bother me. I didn't realise this was rare in CHers?  As, I've said already and also heard others on here say, above KIP 8, I do start to feel nauseas which will usually culminate in me vomiting even if just a small bit. This seems to end the headache, but not if I try to induce it before I'm ready to barf.

I also answered Yes to most of 9-16 with the exceptions of 12,13 and 16 which I feel may be more to do with the way those questions are worded. I would like to qualify my answers to those questions and would welcome any feedback.

12. Do you normally experience a stuffy nostril on the same side of the face as the pain?

I wouldn't say stuffy exactly, my nose tends to get very runny above KIP 8 but I've never noticed which side is the snottiest!

13. Do you normally experience a "droopy" eyelid on the same side of the face as the pain?  I answered no because I don't know because I don't look in the mirror. It does get very teary though.

16. When you have a headache, do you walk, pace, bash your head, thrash, scream? I answered no because I don't pace or bang my head. I can't lie down, that makes it hurt more but my usual was of dealing with the pain is seating either cross legged or in an upright foetal position whilst rocking mainly backwards and forwards and sometimes from side to side. I tend to whimper, invoke the name of Jesus, swear quietly, call for my mum or just whimper.  It's amazing how lucid one can be during even the highest KIP HAs. In some respects I'm fairly resigned to the agony when it's happening. I just rock and reassure myself that it will go eventually.   When my neurologist asked me to describe the pain, I told him what I had imagined during some of my attacks.  It feels like I am a soldier who has been shot in the head and whose brains are coming out.

Anyway, that's me for now. Thanks for being here. This place is a great comfort.

P.P.S! I forgot to mention that I can feel both simultaneously too hot and too cold. I can shed clothes only to put them back on immediately. I also over produce saliva at the higher pain levels and sometimes I feel I have to let it dribble out as if there's something poisonous in it. Does anyone else suffer these symptoms?

Hey hurty,
you describe what a lot of us feel as regards the pain and some of the symptoms.
Sorry had to laugh at the big explosive fart, it may have to do with the 4 spoons of instant coffee you take in your cuppa.
Joking apart  -as the pain we experience is no joke-, the K2 in the D3 regimen, is to keep the calcium from depositing in the circulatory system and direct it towards where it should be, ie: our bones, here is the one batch recommends

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

that's a 6 months supply.


I would recommend you try to take the full regimen as per Batch, take 50000iu D3 once a week for a couple of months on top of the daily 10000iu.
Sounds like you could do with staying away from the booze when you're in cycle as it's exacerbating your CH, is it worth it?
Batch also recommends that we take a good probiotic, i take this one

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you should be able to find it in UK.

I would recommend that you give the D3 regimen a good try, it works for 80% of us. It can take a few weeks for it to be fully effective so stick with it.

All the best

G'day Hurty, and welcome to the biggest unfenced loonie-bin outside of the House of Lords. Quite obviously you've already been through the hoops and have a firm diagnosis of CH.

Sorry about that.

From here on it's simply a matter of looking at the myriad alternatives available, and the list really do go on. Interestingly your magic bullet for one cycle may prove useless next time round, but always keep the leftovers in a safe place. Can't pick the future when it may again turn out to be manna from heaven.

As to your refusal to change you're lifestyle, I couldn't agree more. Risk the pint and damn the torpedoes!

There really is a wealth of information here for you and you're welcome to every last skerrik.

You've had some joy with Immigran sprays but there's also the shots that many people swear by. Mushrooms have helped many and I believe clusterbusters.com have taken it to great levels.

Many mainstream medical regimes remain valid in both preventive and abortive modes, especially when used together, and the D3 regimen seems to be helping many.

I giggled happily when you described the sudden end of a big one as being 'euphoric'. I once used a very similar word to describe exactly the same thing and a moderator threatened to bar me!

CH is a word, not a sentence,

Brian down under.

I wonder if anyone else occasionally chants gibberish to distract themselves from the pain during high level attack?

My chant is "Oh my God, oh my God, oh my God, ..."

Thank you Batch. I will give it a go. I'm sure it would prove most useful for those waking headaches that are too far in to abort in the usual methods. I've been told that the ease of being prescribed O2 depends on under which local health authority one falls under. I guess I will find out soon enough. I did ask my doctor once but he just ummed and ahhed a bit before prescribing something else.  I have to work all weekend, so I will be back around for a chat on Monday. In the meantime, it's great chatting to you all?  Could I please humbly ask if the regiment has been professionally assessed? Are you in the medical profession yourself Batch or just a very experienced Layperson who has had to find all this out the hard way over the years?

Hi Hurty,
The Calcium is optional! You get all the Calcium needed for the regimen to work in the Kirkland Mature Multivitamin.

Cheers Hoppy

Hurty Hurty Ouch Ouch wrote on Apr 15^th, 2016 at 9:08am:


...one other thought...t'would....t'were left to SIR Winston to comment on a CH hit chant/rant:

"I have no objection to proper use of strong language, but a certain amount of art and a certain amount of selective power is needed, if the effect is to be produced"  (1925)

Best

Jon

Hurty,

This is my first post here, but I'm also from New Hampshire (Seacoast area). Currently nearing the end of my cycle and of course I wish you luck in becoming PF.

I've started supplementing D3 (10,000 UI/Day) and B12 for the past 6 days. I need to be smart and follow Batch's true regiment, but I have seen some positive results. Primarily, reduced frequency and intensity.

I went from 2 weeks at KIP 10 to now about a week at Kip 7. These support groups are absolutely the best thing I have come across.

I've had attacks since 2010, but only recently diagnosed with CH.

Whos your Neuro in NH? I've been referred to Dr. Starr in Portsmouth, haven't seen him yet.

-Adam

Hi everyone, I'm back, albeit a couple of weeks after I said I would be. Sorry about that, I'm really not a very good member of any forum I'v ever joined. 

I'm still doing the regime, all but the calcium, K2 and B50 which I will add soon. (Maybe not the calcium though as I do eat a lot of dairy products)

Love your photos Batch, they are amazing and it must have been wonderful to fly all those planes! Just wow!

I'm still getting two headaches most days.  If I avoid alcohol, I can usually skip the afternoon one, but whether I drink or now seems to have no effect on the the night time attack. I actually went 4 days without a drink last week, but then I picked up 12 Sumatriptan tablets and 6 nasal sprays.  I have one tablet left now. but have a prescription to get the same again tomorrow.  At the moment, I'm not worrying about having a drink because I know I can abort an attack fairly quickly if I need to. Also, if I've had to abort a headache with Sumatriptan at its embryonic stage, I know that I have at least a 6 hour window during which I can have a drink with impunity. I won't drink if I don't have the meds, but hey what can I say? I like a drink. I never have more than a pint or so, but the pub is an important part of my lifestyle and I don't like to drink non-alcoholic drinks if I can possibly avoid it!  Hopefully, the D3 regimen, will stop this cycle from controlling my life too much.

Last year, I don't think I even had a cycle at all. but the year before that was particularly bad even the Sumatriptan nasal sprays eventually lost their effectiveness.  When Sumatriptan stops working, that's when I stop drinking completely as I have nothing left to throw at it.   

I went to see the Doctor today and it was a GP I hadn't seen since before my CH first started.  She was very understanding about my request for oxygen and is referring me to a local neurologist with a view to getting it sorted. I told her, I would pay for it myself if there a problem with money, but she said she didn't think there would be.

She asked me what I thought the cause of my headaches was and I told her what I read about about the latest thinking regarding the hypothalamus but added that I felt there must be an environmental factor involved since I didn't get a cycle last year despite having the same hypothalamus.

TeeJ2379 you mention tree pollen. I have considered this before and I haven't ruled it out, although the forecast said it would be very high today and I haven't noticed any effect.

Because yeast is used to make alcohol and bread, and is also in the environment, I'm also considering it a suspect. When I googled yeast in conjunction with cluster headaches, I came across several articles about intestinal Candida. I wonder if this could be a factor though I doubt it as only alternative medicine seems to believe in intestinal candida colonisation. Whatever, I'm not taking any chances and am drinking probiotic drinks everyday just in case.

I'm also trying to cut down on bread because of the yeast and also Gluten. (just in case!)

I guess we all clutch at straws.

Maybe I'm wrong, but I have a strong hunch that there must be a common environmental antagonist which we haven't identified yet which acts on those of us with a genetic predisposition to CH.  Does anyone have any knowledge of the historic data pertaining to CH sufferers?  I'm wondering whether something like the rise of compact fluorescent lightbulbs or wi-fi could be a contributory factor?  I won't ramble on too much now, but I will try and check in whenever I can to keep you all posted.

adamryan - Hi, I think we're talking about different Hampshires. I'm in Old Hampshire in the UK!  We have been suffering for about the same length of time. I'm glad the regime is helping you. I'm sure that all us fellow suffers are pleased when we hear about any amount of relief that anyone is getting, because we all know how bad it can be at it's worst. Thankfully I've only had a handful of Kip 9s this time around, the rest have been a bit gentler.

On a final note. It's interesting that some people say they can't think during an episode. To best of my recollection, I've always been able to think about all sorts of things during an attack (when I'm not concentrating on the pain itself) - In the past I feel on a few occasions, I have managed to abort an attack though relaxation and meditation alone, but I seem to have lost that ability for the time being.