Newbie so please be patient with me

[Tyke]

Dear all, Whilst I really wish I didn't need to register on this site, by crikey am I glad I have.  My story is like so many others on here the cut down version is as follows

First CH cycle started 12 years ago and lasted 2 months. I just thought they were bad headaches so didn't seek help.

for the next 12 years other than use cannabis to ease it. I get 1 to 2 years between cycles but the headaches were getting worse each time.

Finally sought medical help at the back end of my last cycle summer 2011. Doctor immediately diagnosed CH but said only oxygen treatment was available and it wasn't worth the cost or effort as I was at the end of the cycle.

No attack for 2 years then they started again last Thursday with a mild attack during the night and the same each night thereafter, getting worse each time. Went to the doctors on Tuesday who put me on 40gm of verapamil 3 times a day for 1st week to rise to 4 times a day next week then go back next week to see how I'm doing. She also gave me 2 doses of some nasal spray I can't remember the name of in case I get a bad attack and can't cope with the pain. Used one that night which worked a treat so at least I got a good nights sleep.

Yesterday I started trawling the web for more answers and found you guys. How glad am I. Dont know if the verapamil is working yet as I'm still getting my usual attacks each night and lunchtime but after reading about red bull on here I bought a few cans yesterday I can tell you last nights attack was nothing in terms of pain or time. Gone in 15 mins. Halle bloody lujah.

I've also been reading about your busting techniques and if I knew where to get hold of any Mushies or Acid I'd be more than happy to give it ago. Anything to stop the pain for another year to 2 years. 20 years ago, no problem but I thought I'd left my class A days well behind me and wouldn't know where to start these days. Start I will though.

Needless to say I'm right at the start of my busting experience so please try to be patient with me and wish me luck. I've got loads of questions and little clue about what I'm doing yet so I won't be trying anything until I do.

Thanks for reading and feck the pain.

[spiny]

Good morning Tyke!

CH sucks, but glad you found this site. Lots of great people and information here.

Verap takes a while to build up in my experience so don't be surprised that.

O2 will become your best friend! You can use a welding set-up if need be rather than medical O2. It is much cheaper.

Also, slamming an energy drink with Taurine at the start of an attack can abort the hit for many. Coffee works too if you can't hack those drinks.

Feel welcome and ask questions! Here, you are among people who understand and want to help. No need to worry about patience or such.

Others will be along soon to fill you in on lots of stuff. I just wanted you to know that someone was up and reading your post!!!!

all the best

spiny

[Tyke]

Thanks Spiny. My usual lunchtime attack has just subsided and lasted half as long as usual thanks to a couple of redbulls. While it was fresh on my mind I decided to look on the web for some O2 and found it with ease but wont order until I speak to the doctor and see if I can get it free on the NHS. If there are any Brits reading this I would also welcome any advice as to where or how I can procure some mushies or RC seeds. I would prefer mushies to be honest as I've taken these for fun many years ago and know what I'm doing with them and what dose will send me to planet zorg to meet my ancestors for tea n biscuits. That said RC seeds sound like a great alternative and will happily use them if they are easier and/or cheaper to buy.

Thanks in advance for any help

[CHfather]

You're doing great with reading and acting!  Here's some info.

RC seeds in the UK: http://www.allsalvia.co.uk/cluster_headaches.htm.   Yes--inexpensive and effective.  (If your spray is sumatriptan, you might have to stop using it for the seeds (or any hallucinogen) to work.)

Vitamin D3 regimen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Yes -- Get that O2.  If not from NHS, then another way.  Consider ordering this mask, which makes O2 considerably more effective than the standard non-rebreather mask: (European supplier) http://headachemasters.com/product.asp?product=3

[spiny]

Tyke,

You are doing great. I understand Melatonin is difficult to get in the UK, but it helps many (me) with nighttime hits. If you can get your mitts on some, start with 10mg at bedtime. I take up to 30mg in high cycle.

Hugs!!!!

spiny

[Bejeeber]

Hey Tyke,

feck the pain...send me to planet zorg to meet my ancestors for tea n biscuits.... Used one that night which worked a treat

Hating that you're getting hit right now, but enjoying the engaging way in which you converse.  ;D

I'm thinking your verapamil dose sounds low for CH - maybe some headbangers well versed in verap will be along to comment on that. It is known to take awhile to kick in.  :-/

If you acquire RC first, it can be a good strategy to continue to pursue the procurement of the McMushies, so you'll have them ready to go as your back up plan just in case, and won't be caught with knickers down. Ha, I said knickers because you're British.

the headaches were getting worse each time.

Sigh, well it's a bit of a dirty little secret, but this is a familiar pattern - I've talked to other CH'ers who like me have experienced the same phenomenon. Thank gawsh that busting can potentially render it a moot point.

[Tyke]

Thanks you all so much for the support, absolutely none of which have I had over the last 12 years. I can't tell you how good it feels to have just one person acknowledge what I'm going through twice a day. I also appear to have a very supportive doctor. She even rang me this morning to see how I was getting on. After a brief conversation she increased my dose of Verap to 5 x 40gm per day because I've had no adverse reaction from them and to do appear to be reducing the severity and length of my attacks. She even agreed to give me a regular supply of the nasel spray though couldn't help herself from reminding me how expensive they are and asking me to go easy on them. Oxygen is also an option she is open too but only if the nasal spray is ineffective which so far, it isn't.

After further reading on this site I've also gained a slightly better understanding of our condition and how sever it is for me in relation to KIP and time. As far as I can gather I can count myself lucky. I'm certain that I've never had a 10 and relatively confident that most of mine are 7's with occasional 8's thrown in to keep me on my toes and I may just nudge a 9 if I'm really really unlucky.

[CHfather]

It's very good news that things are improving for you, Tyke.  And please keep in mind that oxygen has no side effects, and it doesn't interfere with busting.  Verap and the nasal spray do have side effects (eventually, if not immediately), and do interfere with busting (and for many people if not most, they tend to lose effectiveness over time).  In this circumstance, you might want to go with conventional meds until your cycle ends, since they seem to be working.  Makes sense.  But at the least you would want to be prepared for a possible next cycle with O2, and you might want to bust preventively between the end of this cycle and the likely time your next one would begin.

[b.g.]

I can't tell you how good it feels to have just one person acknowledge what I'm going through twice a day.

Hiya Tyke!

I'm Steve.

So glad you found the site.  If you ever need anything, just ask.

As far as your text that I quoted above.... I feel you.  I didn't have to wait 12 years to find this site, but it really is a wonderful thing that cannot be put into words. 

Most of us have quit trying to explain clusters to friends/family because there really is no explanation that does the pain justice.  You can talk until you are blue in the face, but unless you have experienced an attack, you will never know what it is like.

Then you get in with this group of nutheads around here and it can be life changing. 

We all know how you feel.

WELCOME!

[Tyke]

Hi Guys,

Just a little update. After a particularly bad hit on Thursday night, I managed to go hit free all day and all night Friday which so soon into the start of my cycle is fecking miraculous. I did have a 2 hits Saturday night the first being a real fecker but I managed to go hit free again on Sunday day and all night again. It's so nice to get up for work on a Monday morning again, feeling refreshed and ready for the week. That said, my shadow is constantly reminding me he hasn't gone away and he's still there, waiting for an opportunity torture me with his pokers again.

Another plus. Thanks to my mates who still partake in recreational drug use, I've managed to source some mushies over the weekend. The down side is they're about as far south in England as it's possible to get and 5 to 6 hours drive each way. I don't care though. I'm going and thought I may as well take my son, book a camp site and make a weekend of it.

I do have one question though if anyone can help. Needless to say I'm off all alcohol which I find particularly hard. It's always irked me that my cycle usually starts at the beginning of summer and ends as autumn starts. The headaches provide me with more than enough incentive to stay off it but boy do I miss those thirst quenching beers during the summer and I'm not looking forward to yet another dry one. I was wondering though. If the verap, busting or any other treatments actually get me to the point where I'm not getting any hits, will I be able to enjoy a beer or I am fecked until the end of this cycle?

Cheers for now and remember ..... feck the pain

[spiny]

The 'beer test' is best left alone until you have some weeks of PF under your belt. I too love beer when working outside and know how dry a suds-free summer feels!!! Even waiting 3 weeks or so I have had that beer raise the dragon for me.  >

For busting, I suspect the nasal spray needs to be left off the med list for 5 days. Many can continue with the Verap. What is the spray called? A lot of meds can adversely affect busting. Actually, they keep it from working at all. So, you could be wasting your medicine!!!

all the best!

[Tyke]

Thanks Spiny. I figured as much.

By the way. PF? I suspect it stands for 'pain free' but I've learnt never to assume anything in this life so thought I'd best ask to clarify. In answer to your question the nasal spray is 10mg of Sumatriptan and I am aware that I will need to detox before trying a bust.

[Jeff_007]

Welcome home Tyke!

You are right about PF meaning pain free. Also, that question about the beer test was also on my mind. Boy do I love my suds, but wouldnt even dare to smell it while I'm in cycle. I am currently trying to bust with RC and am taking my second dose tonight, but was hoping to have a beer once I'm PF for a few days, although it looks like I will be waiting longer after Spiny's comments. Sure dont want to invite the beast back to the house just for a cocktail. Stay strong and keep us updated on your bust. Good luck!

[Tyke]

Update. Leonard will have been back with me for 2 weeks tomorrow. In that time I've received more support and learnt more about my condition and how to treat it than I have in the previous 12 years. Much of it is down to this and other CH sites rather than the people and places who should be telling me about it. Thanks to you all.

It does appear that the Verap is having a positive effect which is a good thing. I've not had an attack for 3 days now and if I can shift the shadow, I think I would probably be able to forget im in the early weeks of my cycle and start to beleive I can go to the end pain free. Who fecking ray for that. I've had to move my dr's ap to Monday now due to work but I am a lot more relaxed about only having 2 doses of Sumatriptan at any one time but that's only because the attacks have abated somewhat. That said I've cheated the system a bit and ordered another Prescription today even though I still have 2 doses left. Feck em. If I have to get devious to get what I need then devious I will get.

I'm longing for a pint though. Oh god could I kill a beer. Just one. I even found myself staring at a bloke through the rub-a-dub window yesterday as he downed his so it's obviously on my mind. It's unbearable to think I can't have any until the summer is all but over. Ah well. (puts positive head on)I've done it before so I guess Ill have to do it again.

Laters guys.

Feck the pain

[Bejeeber]

Tyke - I'm enjoying your report and I like your slogan too.  ;D 8-)

[spiny]

Ya could always try an O'Douls (sp?)  That No Alcohol beer really sucks. >

Having been at the point when one sip would send me into orbit, I tried the O'Doul's and promptly decided I would rather drink warm pond water! ;D

Hang in there!!!

[Tyke]

I spoke too soon.

Leonard came round for coffee twice last night. First at 1am when I let him stay for 10 mins or so to see if it was a fleeting vist. When it was obvious he was intent on staying for a while I gave him a squirt of Sumatriptan and sent him on his way. Sadly he came knocking again at 3am and as I had only given him a squirt of Sumatriptan 2 hours before i didn't think it was wise to give him another so with no O2 to fall back on, I had little option but to invite him for a game of Scrabble and wait until he was fed up and left. Just shy of 2 hours later I was back in bed wondering how the feck I was going to get through the day on 4hrs sleep. I needn't of worried though. I slept right through my alarm and turned up for work 2 hours late.

It's worth mentioning I've been feeling extremely agitated lately and am wondering if its the Verapamil? I can't seem to sit still or settle and want to be anywhere but the place I am supposed to be and doing anything but the thing I am supposed to be doing. You know when your waiting impatiently for something  you don't like to finish  and you get that knot in your stomach? That's how I feel all the time. Weird and not like me at all.

Anyway, that's it form me today.

Love Life everybody and Feck the Pain.

Tyke

[Bejeeber]

Oh. Well that's not good at all.  As we say in the states, "Dog Darnit!".

OK, I shouldn't incriminate others, in actuality I'm probably the only one who says that. 

Sounds to me like it's time for you to move to partial dose sumatriptan injections. With them, the extended visit from one Mr. Leonard would likely have been avoidable last night.

You could have hit him with a second dose, and if your experience is (hopefully) like mine, an injection can last ya for 3 hours when 'ol Lenny is coming on like a locomotive for the night hits in high cycle, is laughing at the O2, and does NOT want to be denied his game of Scrabble.

Feck Leonard.

[Pos1964]

Hi Tyke,

Welcome to this site, I haven't been around for a while but wanted to react on your last question about Verapamil.

First let me tell you I'm not a sufferer but the partner of a sufferer. We found this site last year when my partner, Jan, was in a cycle from hell with approximately 13 hits a day, kip 7 to 10.

We've received a lot of support and great tips here! Jan did bust and it worked, eventually he went down to 6 hits a day.

But now your question, yes, Jan also experienced that agitating feeling from using Verapamil (he takes 240 mg 3 times a day) It actually is a medication to lower your blood pressure, maybe it has something to do with it. After taking it for a while, that feeling went away, hope that will also happen to you.

Further more, Jan uses the Optimask CHfather recommended and what a great improvement that has been! Hits were aborted in less than 15 minutes where before with a regular mask they often lasted 45 minutes or longer.

Vitamin D3 is also a great supportive, it seems that people who are suffering from CH have a short of it. Another thing we found out is food additives, here in the Netherlands we have the E-numbers and we know now that when Jan eats something which contains the E-numbers 330-336, he can count he will get hit within the hour. Maybe something to think about?

Wishing you all the best and don't give up, shrooms do help!!!

Elly

[Tyke]

Bej,

They wont give me the injections because they cost more than the nasal sprays, so sprays are what I've got. Having used a few now I suspect it will be impossible to get a half dose out of the spray dispenser but if anybody has any tips, please do tell.

Leonard came round again last night at warp factor 7 and by the feels of him, I think he may have hit 8 and kicked me good and proper had I not given him a squirt. Consequently I've ordered another prescription which I'm hoping they authorise before the end of today. I'm still feeling a bit tense and restless but Elly, your words have encouraged me that this is probably just a short term reaction or perhaps a bit of anxiety on my part because I know what the next few months have in store for me.

Onwards guys and as always...... Feck the Pain.

And yes Bej .... Feck Leonard

[CHfather]

Tyke, I'm on my knees here, begging you.  Get oxygen.  There's no reason why the NHS shouldn't give it to you.  It's the #1 recommended abortive according to EU medical standards (note that injectable sumatriptan is listed second).  (Yes, they all have "A" ratings, but the order is not accidental.)   It's nice that the NHS wants to save money . . . but at the expense of your suffering???????  Really???

From http://www.guidelines.gov/content.aspx?id=34898

Major Recommendations

Treatment Recommendations for Cluster Headache . . .

       Treatment of Choice

Attack treatment      

Oxygen inhalation (A)

Sumatriptan 6 mg, sc (A)

Zolmitriptan 5 mg nasal (A)

Sumatriptan 20 mg nasal (A)

[Tyke]

Father, I have an appointment with Dr Doom first thing Monday and it's top of my wish list. I've been printing off info and keeping a diary of CH activity over the last 10 day to give myself the best chance possible of getting her to agree. I thought I might also ask about Melatonin to try and prevent the night time visitations.

Ironically I was on my way to the Dr's earlier to pick up my next Prescription when Leonard decided to put in a show. Luckily I keep 2 Redbulls in the car so I downed them but by the time I got there I was in the middle of a lvl 7. Happily he fecked off 20 mins later while I was waiting for the Sumatriptan at the chemist which makes that my first Redbull bust and me very happy.

[CHfather]

Here's an article from the leading UK medical journal about melatonin and CH: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2972062-6/fulltext

[Pos1964]

Interesting article  CHfather, we've heard that before on the forum but now it seems to be proven. Never thought of it before tough until we read it on this forum. And if you think about it, it does make sense. When temperature is changing, like it is now here in the Netherlands, Jan gets hit more often.

Although I must say, since he started busting, they are kip 7 at the max and he can quickly abort them with oxygen. Occasionally, when we're not at home, an imigran injection.

When we read about the melatonin here, we decided to buy some supplements which he is taking every day now. I guess that is also a reason why his hits have "changed" in a positive way.

Tyke,

You really need that oxygen! It indeed is the #1 abortive medication for CH. Do make sure to get a non re breather mask along with it, the more 100% oxygen you inhale, the better!

About Jan, he seems to be one off those rare persons where the CH is not responding fully on any type of medication or shrooms. Need to say, als I did above, no regular medication has ever decreased the amount of hits he gets, except for the shrooms. Ever since he is busting, taking Melatonin and Vit. D3, the hits are decreased by 50%!!!! For us that proves it works!

The remaining 50% will hopefully decrease after tomorrow, when he gets his ONS surgery!

Wishing everyone a lot of PF time!

Elly

[Tyke]

Bad weekend for me. Got hit with a lvl8 on Friday night which was the worst I've had during this cycle and 3 lvl 7's inbetween. The Sumatriptan didn't touch the 8 so if they don't give me O2 tomorrow, there is going to be a scene. The further into this cycle I get and the more feedback I get on here, the more I'm realising they are subjecting me to an intollerable level of suffering. I've been coping fine while they were 7's but now i've been reminded what an 8 is like, I'm extreemly aware how vulnerable I am and that I need to protect myself as best I can.

Wish me luck and I'll be sure to let you know how I get on.

Oh. And feck the pain.

Tyke