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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi Peeps!
        
(Message started by: Neil_C on Sep 4^th, 2007, 10:57am)

Title: Hi Peeps!
Post by Neil_C on Sep 4^th, 2007, 10:57am

Hi peeps,

My name is Neil. 35 year old male living in Ireland.

I was diagnosed on Friday last with CH by a neurologist that I finally got to see after waiting 2 months. Before I got to see him I had started my first "remission" period so I had thought that the headaches were one off and that was the end of it - I even nearly didnt go to see him because I thought my problems had faded. When I was told I had CH, not knowing completely what it is, didnt think anything of it until I did some research about it on the web. To my horror I found out that its most likely going to come back to torture me. The thoughts of going through that pain and having sleepless nights again really got to me. My research brought me here and even sites like youtube.com where CH sufferers had documented their attacks. Seeing others going through these same attacks brought me to tears as it reminded me what I had gone through only last month. Reading some of your (member's of the forum) experiences also cut deep in the emotions because I could relate to them.

Not to be misunderstood, I wouldnt wish CH on anyone, but I am glad im not the only one out there. Knowing that I am not alone in regards to CH has had a great positive impact on me because I found it impossible trying to share/explain my CH experience with friends, relatives and even the numerous docs I had seen. I've read a good few posts here and you all seem to have a lot of heart and that has definitely made it easier for me to write my first post here because I know it will be well received.

As a "newbie", Im sure it wont be my only post here as I have many questions about life with CH, but I will leave that for another time.

I still dont want to believe the diagnosis and hope to God that it was a mistake but Im sure most CH suffers have some sort of denial at the beginning.

Talk soon and thanks for reading my intro.

Yours,

Neil

Title: Re: Hi Peeps!
Post by Wayne on Sep 4^th, 2007, 12:30pm

Howzit Niel

Welcome, wishing you a long PF cycle. Do take the time to prepare for the time the beast comes knocking again so you can whack him with the big stick quickly.

Cheers,

Wayne

Title: Re: Hi Peeps!
Post by DennisM1045 on Sep 4^th, 2007, 12:54pm

What Wayne said! Build up a game plan for when it returns. Know what you are going to do when that happens. Just having a plan can take some of the panic out of it. It did for me.

However, once you have a plan, live between the hits and don't let the beast rule your pain free time.

I hope your break is a long one.

-Dennis-

Title: Re: Hi Peeps!
Post by michael on Sep 4^th, 2007, 1:03pm

Hi Neil and welcome to the family.

Yes, people on here do have `alot of heart' because we feel your pain and know what you are going through. I never heard of anyone else with CH before I found this site and although my family tries to understand I still felt alone.

You have a new family here to help you deal with it.

PF wishes

Mike

Title: Re: Hi Peeps!
Post by Neil_C on Sep 4^th, 2007, 4:51pm

Thanks guys for the welcome and the heads up. Thanks Dennis for the translation. I understood what Wayne was saying as I did a good bit of travelling back in the day and met many peeps that spoke english just that bit differently :D

Many thanks again! I got a few posts out there already - A couple questions so please feel to gimmie some input - Would appreciate it!

Cheers,

N

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 4^th, 2007, 7:05pm

Neil,

Just saw you're from Cork and as such can offer little or no support for you in the forthcoming GAA finals seeing as the in-laws are from Kerry and I'm a good 20% Ciarrai and rising (allegedly).

However CH brings the strangest of people together and this place was and still is a godsend to sufferers. Haven't been here for a bit but it's brilliant to see so many people still giving top line support.

Fact I haven't been here here for a while shows that CH and normal family life aren't mutually exclusive. The fact I'm here suggests I'm due for the annual visit which I'm pretty cool about now.

Lots to read and lots for you to do, as a first step next time may I recommend the high flow O2 and non-rebreather mask as an abortive?

Incidentally we just had a week in Bantry Bay and as ever loved it, tho' I still don't quite get Murphys in the same way Guinness and to a lesser extent Beamish gets to me.

Title: Re: Hi Peeps!
Post by Neil_C on Sep 5^th, 2007, 4:32am

Beastfodder,

Im more like European than Irish. I was born in Germany - Irish Father (born in London) and a German/Polish Mother (born in Warsaw). I dont even look like an Irishman and my accent is far from Irish.

As for the GAA, I have absolutely no clue about it :D

I have to admit Bantry is a great place. My mother had a house opposite the Golf Course down there. I also worked as a chef in a small restaurant down in Ballylickey but that was ages ago :)

As for any of the darker irish beers, they just dont do anything for me. Now if Jameson made a beer - id drink that :D

N

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 6^th, 2007, 5:24am

Neil,

Small world, we stayed in Ballylickey.

I must also confess that I don't really know the first thing about GAA, but am impressed by the passion catching some of the recent play-offs while we were out there.

Big thumbs up for Jamesons, Black Bush and Paddy - tho' not in one of the locals we go to back in Kerry (the one that does regular lock-ins in the village) since the land lady is said to make the whiskey go that bit further by adding Poteen. Safe to say alcohol isn't a CH trigger for me!

All the best

Andrew

Title: Re: Hi Peeps!
Post by LeLimey on Sep 6^th, 2007, 9:53am

Guinness is yuk and my family are from Galway and thats the best 'cos I say so - na na na na na!! ;;D

Welcome Neil, tell us a bit more about your CH regime and lets see if we can offer any help.

What meds are you on? Have you tried O2? How long do your attacks last on average and do you get hit more at day/night/equalish?

Yes "equalish" IS English so there!

Welcome to the nut house
Helen

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 6^th, 2007, 11:45am

Galway's Father Ted country - so does that make Helen our Mrs Doyle? :o

Title: Re: Hi Peeps!
Post by LeLimey on Sep 6^th, 2007, 11:51am

Ah go on, go on, go on, go on, go on, go on, go on, go on, go on, go on, go on, go on, go on, go on, go on, go on ;;D

GO ON OR I'LL SMASH YER BLOODY FACE IN!!!

Does that help Andrew?! ;)

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 6^th, 2007, 11:55am

Drink!

Feck!

Arse!

Girls!

Anything else would be an ecumenical matter :P

Title: Re: Hi Peeps!
Post by LeLimey on Sep 6^th, 2007, 12:00pm

Once a Catholic all the above (and a few more ) ARE ecumenical matters ;;D

There you go Neil - now you're official - you've been hijacked!!

Title: Re: Hi Peeps!
Post by Neil_C on Sep 6^th, 2007, 12:46pm

on 09/06/07 at 09:53:28, LeLimey wrote:

Well guys & Helen :)

Im still in my first ever remission and feel better than I did before my first hit which lasted about 5.5 weeks. I guess its because ive started to look after myself much better after that horrific episode. Because the way I feel now, I guess im still in a bit of denial about being diagnosed but the more I read up on CH, the more I can relate to it - symptoms, pain etc. and except the fact its most likely coming back to haunt me.

They came about an hour into my sleep - firstly gradual and then like a steam train. Initially, the strongest thing I had in the house was paracetamol which as you all know does absolutely nothing. Id go down stairs, not to wake any one and go into the living room. Firstly I would pace about like nut case, then I would hop on my left leg (hits me on my left). I kinda dont remember everything but I end up on the sofa in cross legged yoga seating position with my hands palmed into both of my eye sockets. I would go back to bed wrecked and then about an hour later I would be going through the same ritual. 2-3 hits a night about 40mins everytime but havent made a diary (will make one in the future)

I went to the doc the next day and she blamed it on the sinuses. So I got flixonase and sopadol (500 paracetamol, 30 codiene). Same night again, just that much worse. Went back the next day, got a 10 day antibiotic and was told it may take a while to kick in so after about 5 more days playing with the beast I went to another doc. She gave me pretty much the same thing but I got some sleeping tabs cause I was just completely wrecked. By this time the only place I could sleep was on the sofa and in such a way that my face hung over the side, facing down.

Sleeping tabs didnt do anything other than turned me into a mindless zombie while having the attacks. Call the doc up and got sent to the ER to get to see if I could see a ENT specialist on the quick - remember, both docs at this stage thinks its something to do with my sinuses or my eutascian tube (not sure about the spelling but its the tube between the nose and ear). Get to the ER - 2 hour wait - im examined - 1 hour wait - Sinus X-ray - 4 hour wait and get to see a guy they tell me is the ENT specialist - bulls**t - he was just a senior in the ER (found out later from a friend's wife who works there)

So im back on the phone to the doc who swings a few favors and gets me to see a real ENT specialist 2 days later and the doc also made an appointment for a neurologist in a Univeristy Hospital Migraine Clinic just to be on the safe side.

ENT guy gives me a once over - endoscope etc and is pretty happy that there isnt anything wrong with me regarding his field of work but still orders a CT scan of my sinuses. He asks me if I grind my teeth at night and I couldnt tell him. So as desperate as I was, I called my dentist up as soon as I could and asked him. He immediately says "yep" because he made note of it during my check ups (good boy!). Rush of down to him and get an X-ray, a mouth mould and mouth splint is ordered for me to stop me clenching/grinding at night. Im like "wicked!" - headaches sorted, just have to hang on a week until this thing arrives.

About 3 days after being to the dentist and hoping its the teeth grinding that was causing it they suddenly stopped - the beast went. That kinda worried me cause I thought there might be something dead hanging there in my head and I was having a calm before the storm. My last hit/attack was in the morning strangely and was probably the worst one of the lot. So Helen, not "equalish" :D

The rest of the story is in my intro. As for medication ive been given 2 imigran 20mg nasal sprays - Whoopy, cant wait to realise they wont do much. Anyways, in the meantime ive been onto a company up in Dublin that do the right O2 set for CH'ers. Just working out the costs as I dont have Health Insurance (Changed jobs and didnt renew - its ok, ive already slapped myself). Fortunately in Ireland theres a perscription sceme where the government pays everything after 80 euros so basically all prescription drugs cannot cost me more than 80 euro per month. The the O2 can be written up as a prescription so thats cool. Red Bull is already in the house.

Have I missed anything? :D

N

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 6^th, 2007, 1:20pm

Absolutely no need to slap yourself, that's what Helen's for

;;D

Make sure you've access to what's known as a non-rebreather oxygen mask (Google clustermasx from the admirable Ben in Brighton and you should be able to get your hands on one).

And you'll need to make sure it's a cylinder with a 'high flow' regulator of up to 13 or 15 litres per minute, making sure there's no smoking at the same time.

In terms of medication read on, verapamil, lithium, and triptans like imigran and frovatriptan all work to greater or lesser extents either as abortives (Triptans mainly) or to tone things down. Important to do the reading because there are side effects.

There are alternatives too. Clusterbusters is an option for some and confess it does get my vote.

Title: Re: Hi Peeps!
Post by Neil_C on Sep 6^th, 2007, 6:04pm

on 09/06/07 at 13:20:19, Beastfodder wrote:

Andrew,

Cheers for that advise. I am doing alot of homework on CH and as soon as its all shoved into the right spots in the old thinking machine ill be able to choose what I need to try next if what I was using doesnt work for me.

Shoot me if my sentences get too long! :)

As for the clusterbuster alternative, Im kinda strange when it comes to drugs - Left my wife cause she did too much - well, the alcohol and chronic bad breath didnt help either :-X

As for what they are trying to achieve, good for them for being different and if it works i hope they get it as a legit treatment - I just hope if it does happen people dont pretend to have CH so they can get high :o

N

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 7^th, 2007, 5:19am

Spurious thrill seekers get weeded out of here fairly quickly and with little sympathy.

Couple of things are fairly new in the field - first is using seeds which have little or no psychedelic overhead for the sufferer (RC, HBR etc) and use a compound called LSA.

It's a more defensible position with respect to legality which is always a good thing. Plus the dose for breaking clusters should be well below what people would call recreational.

Worth bearing in mind that Triptans and stuff like LSD, LSA and mushrooms are very similar in that they're all from the same family of 'indole-ring' chemicals.

Another thing that's new is in Germany they're starting some clinical trials using LSD-bromo, or LSD that doesn't work psychedelically. Though I don't know what the results are as it's still a little early and the numbers are small. Clinical trials are also being done at Harvard/MAPs but again it's slow going but there's a load of good news stories here.

Certainly seems easier for a pharmaceutical company to get a new Triptan out on the market (and with Migraines it's potentially very lucrative) rather than stuff which can't be patented - but that's a whole other story.

Personally it's easy to justify because it stops the CH cycles. Also the only CH headache that's made me scream out loud and physically bang my head against a wall was after taking Maxalt Melt (a Triptan that dissolves under the tongue) giving what's called a rebound headache.

They don't work for everyone, then again you get rumours that stuff like Verapamil can make episodic CH chronic. Confess I haven't tried too many prescribed treatments other than the Maxalts and something called Pizotifen . Latter having really nasty side effects - made me even more stupid and unable to stop eating carbohydates (and obviously the O2 which is great).

Others have potential side effects of liver damage and cardiac problems which makes me think with just O2 and a couple of alternative treatments I'm pretty damn lucky to have found a way to keep a lid on things. Less is the new more :D

Thing is you already know more than the average GP about CH because it is so rare and there's lots more to find out. Never ever want to get to the situation where stuff like ONSI treatment becomes an option (they put electric wires in your head!) Also it's kind of upsetting for my kids to see Daddy suffering so I want the damn things finished and out of my life.

Sorry seem to have gone on a bit.

Title: Re: Hi Peeps!
Post by Neil_C on Sep 7^th, 2007, 7:37am

Andrew,

Cheers again for that. It seems like youve done your homework like everyone else has done especially when you become desperate. I too have a kid and another one the way and dont want them growing up seeing me like that. Ive never been a fan of any type of medication and will most likely ride out as much as I can without going from tab to tab. O2 and Melatonin will be my first approach as im ECH and pretty much only get them at night. Im thinking of maybe going to Germany to see a specialist there. My mum lives there and is doing some research for me at the mo.

Im not impressed with the medical professionals here in Ireland and it takes bloody ages to get things done here. It would be interesting to meet/talk to someone who has CH in Ireland and see who they've been using.

Thanks for the low down once again,

Neil

Title: Re: Hi Peeps!
Post by Beastfodder on Sep 7^th, 2007, 9:40am

Neil

Sounds like you've come a long way quickly, but that's the value of this place.

Bet there are probably more than a few CH sufferers in Ireland who haven't been diagnosed properly, but I've never heard of anyone with the problem out there.

Best of luck

Andrew

Title: Re: Hi Peeps!
Post by Rosybabe on Sep 7^th, 2007, 11:39am

Hi Neil!!

Welcome aborad!!

I see you have been greeted by some of the finest here ;;D

There is no much more I can add but giving you the welcome one more time.

I strongly suggest you get hand over an Oxygen tank soon. It works and have close to non side effects.

Have you tried meltonin? spaces the hits at night and is over the counter.

In other matters, my husband is looking into getting a little property in your area (He wants to be close to the family roots, not permanently, but wants something over there :)) . We wil appreciate if you can give us a hand on that when the time comes. ;)

nothing else to add right now, but feel free to roam around the board and post pics of you and your little ones in the general board. We love to get to know other clusterheads and families :).

Wishing you lots and lots of pain free time!!

Rosy.

Title: Re: Hi Peeps!
Post by MvT on Sep 8^th, 2007, 1:26pm

just wanted to say hello and welcome Niel :)