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Title: Thoughts from the night. Post by GrooveMeister on May 13th, 2008, 3:11am I wrote this in the middle of the night without thinking I couldn't post until my registration was through. Still, it sums me up pretty well just now so here goes. I'll keep any future posts much shorter but right now I need to rant. It's 1am and yesterday morning's euphoria is slowly giving way to despair. Up until Friday I was being treated with indometacin for paroxysmal hemicrania. This was having no effect so we started meds for CH - in my case verapamil & prednisolone. Within 12 hours the headaches are all but gone. Confidence starts to return over Saturday and Sunday as I get only a handful of minor attacks then bang, Monday comes along and kicks me in the face. I wonder if the drugs did anything. Was it just a coincidental period of relief? Does that happen? I can't bring myself to try to sleep for the anticipatory terror that holds. But here I am, terrified because of the anticipation. I sit here at my PC reading CH forums and crying at all the pain. The more I read, the more I'm sure CH is what I have. Everything fits. My heart goes out to all you US guys who don't get low fee prescriptions on the NHS. I put some music on random and Siouxsie Sioux soon shows up with 'Only at night time I see you, in darkness I feel you' and it means only one thing to me. Not a song about headaches (a misnomer I no longer find even remotely amusing. What's 'ache' got to do with it?) but sends me into floods of tears from those few words alone. Not that it happens only at night time, that's just when it's at its most lonely and demoralising. Billericay Dickey has a love affair with Nina in the back of his Cortina and briefly brings me back to life as I laugh. Then the creeping, tightening sensation comes up the back of my neck and the fear takes its hold of me. Five minutes later and I'm howling in pain knowing the worst is yet to come. How far up this logarithmic scale of pain will this one go? Then come the mind games. The thoughts of death and paradoxical thanks be to god I'm an atheist. Surely nothing could destroy a person's faith like this? I honestly mean no offence. Finally I peak and I'm simply insane. Fourty minutes of silent screaming and St. Vitus boogie later and the switch is thrown. I'm fine again. Until next time. I say fine. My neck and ear won't let up and I'm too scared to lie down. At least it doesn't feel like a quarter of my teeth are rotting their way up to my eye punching the crap out of my nose along the way. I try not to smoke (any truth to the smoking trigger?) but some thought or other soon makes me cry and I need the comfort. I daydream of being able to get back to the geek job I love doing but know, for the time being at least, it's just a pipe dream. WHEN WILL THEY STOP? My family are taking shifts visiting and trying to look after me but the more they realise there's nothing they can do, the more it affects them. My mum especially. She is desperately trying to show a brave face for me but feels so helpless we end up just holding on to each other and sobbing. She's been magnificent in talking to all the doctors. She left on Saturday. Hopefully she's able to think of something else by now. I know she's hurting. Had a fine movie marathon with my sister on the relief that was Sunday. Dad's down tomorrow to take me to the neurologist. Couldn't wait another 3 weeks for the NHS, had to find the dough to see him privately. Hopefully I'll have a bona fide diagnosis at long last. Small comfort. I am so fragile just now I don't know how much more I can take of this. Then Suggs reminds me of the joys that life can hold. I just hope he can keep it up. No more Grey Days. It's 3am. Going to try to sleep now and dream of the day my bed looks comforting once more. Unfortunately I fear there's something of a fat chance. (Got a good four hours pain free sleep in the end. Tired but not exhausted and not going to tempt it by going back. My neck is relatively relaxed and I want it to stay that way. Just had my first good guffaw for a while. First random song of the morning - The Somnambulist by XTC. Not feeling quite so low.) Thanks for listening and sorry for all the British music references! Steve |
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Title: Re: Thoughts from the night. Post by chefjohn on May 13th, 2008, 4:06am Dear Steve, Welcome aboard and sorry your here. I joined recently and thpeople here have been a godsend to me. I will give the same advice to you that they have given to me. First is to read, read, read much as you can. When you go to the doctor and he does his tests, he will know if you have CH. At that point you want to be familiar with all the medical options that are available to you as you are familiar to your British music. The first and foremost thing that everyone will tell you here is O2. You want to insist on getting a prescription for oxygen and you want to make sure you ve the proper equipment, etc with that. i know what it is but am not going to quote it for fear I write something wrong but all the inormation is in here. many members are good at providing links to information. Go to those links and read as much as y can. When you are there print out as much as you can and bring it to your doctor to see. Don't be surprized if your doctor is nt an expert on CH. I suspect very few are and they rely on the available to make their decisions. Some of the conventional wisdom seems to suggest lower dosing of certain medicaions or procedures when you really need more. This information can be found on this site so make sure o print it and have your doctor read it. Insist that he reads it as long as your going private facility and paying for it. Your the one in pain, think about that pain while your in front of the doctor. I'm not going to go into here why the drugs your using haven't worked yet but i know that they need time and you also need an abortive medin to go along with them when the attacks occur. I just had one about an hour ago and took Imitrex ( I think it has a different name in the UK ). It took about 20 minutes to take effect and I feel much better now. Anyway I have rambled but i hope this information is helpful. you will get pleanty more here. Don't be shy and remember your not alone here. Hoping y have some pain free (PF) days ahead. Sincerely John |
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Title: Re: Thoughts from the night. Post by chefjohn on May 13th, 2008, 4:11am Like I said I just took Imitrex...Sorry about the spelling in my last post. That must be another side effect that they don't put in the literature LOL. |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 13th, 2008, 4:40am Thanks John, I have seen the same neurologist before and I am pretty confident that he knows what he's talking about and understands as best he can the level of pain I'm in. I think the mis-diagnosis that time was probably more down to the referral process of the NHS meaning I was pain free for about 3 months before I actually saw him. As a result my descriptions were not as concrete as they will be, without doubt, this time. Chances are he'll get to see it for himself. He said at the time he wasn't sure and if the paroxysmal hemicrania turned out to be wrong then clusters would become the primary diagnosis. It's now about 7/8 hours or so since the last one subsided which is very good going (up until the change in meds it was around 8-10 a day) so I'm going to go off and try to write some music. Get my head out of the state it's in. This site is proving a cathartic if teary experience. I will be back. Steve |
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Title: Re: Thoughts from the night. Post by RichardN on May 13th, 2008, 8:28am Hi Steve & Welcome to Clusterville We totally understand! When my wife found this site for me (2/02), was having 6-8 attacks per day, sometimes 3-5 at night . . . I was a basket-case . . . always in fear of the next one. This place gave me my life back. The preventive meds you've started is common. Prednizone is a transitional drug meant to help with the attacks til the Verapamil kicks in. I used Verapamil to good effect and had my first PF day (in over a year) when I reached 240 mg (had 3 attacks that night, but had 02 to kill them). Got as high as 480mg . . . many here take much more and often in combination with other drugs (like Lithium). 02 02 02 ! ! ! This should be your first line of abortive and easily available in the UK. Have your neuro fill out a HOOF form (home oxygen order form), and they'll set you up quickly . . . . works for 70% of us and it takes away a great deal of the fear, knowing you have some control over the beast. One of the most favored abortives is Imitrex injectibles (Imagran in the UK). Works in minutes. I have some artery blockage and high cholesterol, so can't use it, but it has been the salvation of many for the hits the 02 doesn't reach. Helen (LeLimey) will be along shortly to help guide you. She is very familiar with the NHS and can help you crash any roadblocks you might encounter. Also, she'll pass along the OUCHUK link and supporters hot-line that's available to you. Sorry you're here . . . but very glad you found us. Read, read, read, and ask any questions you might have. The answers/info/caring/sharing you will get here comes from folks who truly know your pain. Be Safe, PFDANs Richard |
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Title: Re: Thoughts from the night. Post by mattus on May 13th, 2008, 10:54am Hey Steve. I feel like I'm the lightest affected on site. It makes me sad for the rest of you, but it also makes me thankful. I have probably a week of what I'd term mainly shadows, with a few kickers, then it's off for a few months. But, I have the pain. I empathise. You take it easy. I'm not going to say anything the other guys here won't. Listen to them. They're good people. And don't give Brian beer. Send it to me instead. |
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Title: Re: Thoughts from the night. Post by DennisM1045 on May 13th, 2008, 11:23am Hi Steve, Welcome to your new home on the Internet. Looks like you've found the rest of the brotherhood. Now that we've found you, you'll never be alone with this again. I love the way your write. It made me feel like I was sitting with you. Which, metaphorically speaking, I will be from here on out ;) Your family sounds amazing. Supporters are the rock we cling to in the storm. Thank them for me. Also please encourage them to sign on. They'll learn more about what's going on, how to help and how to kick you in the ass when you need it. The medications you listed, pred and verapamil, are preventatives. They'll hopefully keep the intensity and frequency down but won't help you in an attack. For that you need an abortive. I mainly use Oxygen. Get used to hearing that. 100% Oxygen delievered at 12-15lpm through a non-rebreather mask is a God send to a lot of us. Relieves a hit as fast as 10 minutes with zero side effects. No other treatment can boast that combination. If you don't get on it quickly then things can still spiral out of control. That's what Imigran Injections are for. They've pulled me out of the worst fixes without fail. There are other triptans out there besides Imitrex but it's the most commonly perscribed. You have faith in your Neuro. That's great. But experience has taught us that there are a lot of great Neuros out there that just aren't properly educated. A truly great Neuro is one that isn't afraid to learn something new and is willing to work with you. The fact that you were only perscribed preventatives tells me there is a little your Neuro can learn about clusters. So it turns out that your most important weapon in this fight is knowledge. The more you know about how to treat your condition the better your quality of life. Are we pain free? No. Most of us anyway. But we're better off than we were. We're winning. You can win too. The trick is to find that magic combination that will work for you. Here is some reading material that should get you started... http://www.plainboard.com/ch/chtherapy.pdf http://www.efns.org/files/guideline_49.pdf Let us know how it goes for you. -Dennis- |
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Title: Re: Thoughts from the night. Post by Dan Moore on May 13th, 2008, 4:03pm Hey Steve, Welcome to the site. It came as a relief when I found this place, as it has to you, no doubt. Dude, you are quite simply, never alone. Take comfort in that and try to keep positive. Never easy, but there are some rather amusing people on here to keep your spirits up :) LeLimey (Helen), has already given me some really useful info on certain services that the NHS can provide and I'm sure she will give you the same. I wouldn't like to give you any misinformation, so I'll leave it up to the veterans ;;D The only other thing I can suggest is (like everyone else suggests!) check out all the info and do a little research. There's also a fantastic letter in the message board which you can print out and give to employers, friends and relatives which saves a lot of explaining on your part. Good luck buddy, Dan 8) |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 13th, 2008, 6:22pm Thanks one and all. It's been a hard day but I'm the better for it. Seen the neurologist again and now I'm sure he understands. He talks about it like he gets it himself although he says he doesn't. Most of it felt more like psychiatry than neurology. He's basically given me an open invitation whenever 'I feel the madness' to go see him without appointment and he'll make the time. He's definitely dealt with this before. He's private so it's only on his Monday NHS clinic at my local hospital but long experience shows I can last a week. Lots of advice on various abortives - in particular O2 and imigran and most of all, talk to you guys and ouchuk. 'They know best' says he. What a relief. Sent the letter to colleagues to my boss and got the warmest response imaginable which is a load off my mind. Best of all though, this geek got his new computer today, from which I type. It's the mutt's nuts! No longer will I be rudely informed that my computer is too slow to play the music I write or my code take hours to compile. Just wish I didn't have to sleep. Groove on. El Stig PS. Sorry mattus, the beers are waiting just for me. They have a patient soul and sooner or later, they will party in my belly. |
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Title: Re: Thoughts from the night. Post by DennisM1045 on May 13th, 2008, 9:33pm on 05/13/08 at 18:22:45, GrooveMeister wrote:
Just remember ... applications expand to consume all available resources. The next update of your compiler or favorite IDE should take care of those spare CPU cycles ;;D -Dennis- |
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Title: Re: Thoughts from the night. Post by RichardN on May 13th, 2008, 9:34pm GREAT NEWS Steve :) [smiley=thumb.gif] [smiley=thumbsup.gif] . . . and you'll have to add your doc's name to the recommended docs list on OUCH. Sounds like you've got a real winner there . . . and they're hard to come by. When do you get your 02? Used early-on in the attack, I can usually kill him in 5-10 minutes . . .BEFORE he wants to "dance". Also glad the "letter to friends/colleagues" has helped those closest to you in daily life have a better understanding of what you/we go through. Keep reading . . . keep asking . . . stick around and help "row the boat". Be Safe, PFDANs Richard |
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Title: Re: Thoughts from the night. Post by CostaRicaKris on May 13th, 2008, 10:20pm Hi Steve, Welcome. It's wonderful that you have such great supporters. I do as well, but only those that have dealt with the beast themselves truly understand, so I'm glad you found this site. BTW - Love your taste in music ~Kris |
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Title: Re: Thoughts from the night. Post by chefjohn on May 14th, 2008, 12:23am Dear Steve, Glad to hear you had success with your Neuro. I went to the doctor today too and hav a Neuro appointment next week. I can't tell you how much it helped me going into the doctor's office armed with all the info I had. i printed out a lot of the papers that are cited here and if definately helped. Hope your finding relief. John |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 2:16am Now I really wish I didn't have to sleep. 4 attacks, 2 10s and the single worst thought I will ever have. I can't post it here but it's haunting me. I am in a right state I don't mind saying. Shit. For what I am about to receive may the whatever take a right good kicking. |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 2:24am on 05/13/08 at 21:33:52, DennisM1045 wrote:
True, VC++ 2008 express here I come. Gotta take my mind off this shit. |
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Title: Re: Thoughts from the night. Post by AussieBrian on May 14th, 2008, 2:41am on 05/13/08 at 18:22:45, GrooveMeister wrote:
Yeah, you tell 'im, Groovemeister. I mean, you're British after all, and he should know better than try to take advantage of the unfortunate. Still, I worry the beer might be too much of a lure to you so consider trading it for vouchers which can be lodged in perfect safety at AussieBrian's Bank c/- the Boomerang Hotel, Mackay. This information supplied happily and for free purely in the interests of your health. B. |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 3:02am on 05/14/08 at 02:41:09, AussieBrian wrote:
Ha, we have the second best beer in the world and it's not exactly a long hop to Belgium to get the best! |
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Title: Re: Thoughts from the night. Post by Kirk on May 14th, 2008, 3:37am Welcome to the maelstrom. Wish you weren't here brother. Hopefully Helen (LeLimey) will be along soon, as she is a wealth of knowledge when it comes to the health care system in the UK. While everyones preventative, and abortive medication cocktail varies. One thing that works as an abortive for 70% of us like a charm is O2 W/Non-rebreather mask, usually around 15 LPM. Personally I use it at 20-22 LPM. The thing is to start using it at the very FIRST SIGN of an attack. Do not pass go, and do not second guess yourself. Sounds like you have a good Neuro. Thats great news. And you have some wonderful supporters. I am also blessed with an understanding and loving supporter. Enough cannot be said about how important they can be in your life. Count yourself blessed. And make sure you comment your code before you compile. I gave up Eclipse for Netbeans for an IDE. What are you using? Please be well [smiley=smokin.gif] |
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Title: Re: Thoughts from the night. Post by AussieBrian on May 14th, 2008, 4:06am on 05/14/08 at 03:02:41, GrooveMeister wrote:
Well now, there's gratitude for ya! Try to help a bloke out and get abused! Just for that, Groover, I'm not going to warn you about a certain Englishwoman who regularly visits this site and *Edited by MI5 under the Official Secrets Act. |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 4:45am on 05/14/08 at 03:37:39, Kirk wrote:
It's all VS at work (along with the ultra modern vi for linux/solaris stuff) so I just stick to the express version for my home nerding. Just hope they've fixed the crappy CPU usage of intellisense in the latest I've just installed. Not to mention get 'em to do better job on their 'random' play on media player. There goes Siouxsie again banging on about the nightshift. Perhaps we should start our own cluster geeks thread. Here I am, second day in and forming splinter groups! Just wondering if Lee Thompson of Madness has mad headaches. Razor Blade Alley has taken on a whole new perspective. Used to think it was about herion but not so sure now. 'I'm just to shy to check in, but this pain of pissing razors is cutting in. Oooh Felt like a Knight without shining armour on at the time She thought she was in a dream, floating up on cloud nine Now I awake, She is nowhere, But the razor cuts deeper everywhere.' Or it's possible everything reminds me of it right now. |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 4:55am on 05/14/08 at 04:06:05, AussieBrian wrote:
Aw c'mon now, we have to have something to make up for our weather. You guys are really pulling me through these last couple of days. I was about as doom ridden as I've been first thing this morning and now total strangers from the other side of the world are cheering me up more than my mum can. I'll be having one beer for each of you when I can. It'll be Floreffe Dubbel, the finest beer in the world. Maybe a large Macallan to chase each one down. Or is it the other way around. Cheers. |
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Title: Re: Thoughts from the night. Post by chefjohn on May 14th, 2008, 5:00am 18 year old I hope. I remember drinking a bottle of it at my brother's apt in London in November 1985. Good Stuff. |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 5:08am Not normally, the standard 10yo is great but this will be a special occasion so why the hell not. |
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Title: Re: Thoughts from the night. Post by LeLimey on May 14th, 2008, 12:47pm Oh dear Steve, You poor poor man! Not only do you have the beast on your doorstep but me too LOL I'm just the other side of Nottingham from you and God help you mate, if you think CH is a pain in the bum, wait til I get going! First of all. Who are you going to see and where? Were you taking the pred at the same dose or did you start to taper over the weekend? Pred is a funny beast. It's best taken first thing in the morning and all together. IE if you are on 80mg a day, take the lot at once in the morning. What dose ARE you on? There is no truth in my opinion to the smoking trigger. I have never smoked but I know many, many clusterheads and I've seen far too many get hit. All who do smoke, light up asap after a hit. I tend to prefer it if they move away fromt he O2 first though LOL (Yes I HAVE seen what happens when they don't!) Have you tried any of our home help remedies? Ice? Heat? Red Bull? It sounds bizarre I know but Red Bull (or supermarkets own equivalents) are brilliant. If you chug one at fist twinge it can knock it right on the head. I highly recommend it. Tastes likes cat pee but beggars can't be choosers! (I actually use Asda Blue Charge - £1.30 for 6 cans) I love ice packs too, one on the back of my neck (in a tea towel) and one on the affected side of my fizzog and I'm away. I'm telling you, frozen peas ARE my best friends! By the looks of things you haven't tried O2 yet. Oxygen at 15LPM is a godsend (liters per minute) I can abort a hit in 5-7 minutes using that and you can get portable cylinders that are about the size of about one and a half 2litre bottles of coke. You can carry them and a mask around in a rucksack or a holdall and go where you like.. I do! I know what you mean about fragile. I think one of the most insidious aspects of this is how it saps our self esteem and our cinfidence. Trust me, having a can of red bull and a tank of O2 gives you back that control and makes you feel like you CAN get through this and you know how empowering thats going to feel!! When I first found O2 and found how it worked.. you'll laugh but I wanted to stop people in the street and tell them! It was incredible and I was delirious with excitement. I still feel like that every time I abort a hit. Imitrex is called Imigran here. It's actually the only licensed med for CH so your doctor may baulk 'cos its BLOODY expensive but he cannot, I repeat CANNOT refuse to prescribe it for you. Make the neuro give it to you 'cos he can't argue with him either. You want the injections NOT pills or nasal sprays. They are only just subcutaneous, kind of like one of those blood pin prick things diabetics use so it isn't a big deal honest! We'll give you full instructions on how to use them once you've got them. If your neuro isn't a headache specialist (and neurology is a HUGE field) ask for a referral to Dr Evangelou at QMC. He's my neuro and I think he's brilliant. I've got him well trained bless him ;) Check your pm's.If you want to chat anytime you can call me. I'm in most of the time and for goodness sake, don't worry about how late it is. I'm not bothered and I get really pissy when people should have called for support and don't! Hang in there, we'll help you get sorted asap. Ohand don't forget to tell us how you are taking the pred and dose! Helen |
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Title: Re: Thoughts from the night. Post by GrooveMeister on May 14th, 2008, 3:12pm Hi Helen, There's been a few posts saying you're the UK head cluster boff so I took a look and spotted where you lived. Thankfully no need for a referral to Dr. Evangelou, already there and he's in Loughborough hospital every Monday. My gut feeling was he knew what he was on about but it's good to hear it from someone in the know. He wasn't too impressed at the dosage my GP gave me - 40mg prednisolone (all at once when I get up. If I've ever got down that is) and 40mg verapamil 3 times a day. I don't really hold it against the GP, he was quite up front about not knowing about the condition and was reluctant to prescribe doses that were far higher than he'd ever done before. It's clearly not common enough to be covered by general practice but he's taking me seriously and well beyond suggesting any old pain killers. I was referred to Dr. Evangelou when I last got this in late '05 but you know the NHS, they were long gone by the time I saw him. Like getting some physio 3 months after you've fully recovered from an injury. He was torn between paroxysmal hemicrania and CH then and went for the former mainly because of the number of attacks I was getting - up to 12 a day which is apparently fairly uncommon. He said move straight to CH meds if the indometacin failed to work. Saw him privately yesterday (can't wait for the bill, no idea what it will be, don't care) and there is no doubt anymore. First really mental one came on during a flight from Edinburgh to East Midlands at the end of the '05 festival. Don't know what I'd give it but it must have been at least an 8. Playing pinball off the walls of an EasyJet bog. Which was nice. Been getting these one sided headaches for many years - since early 20s - but '05 was when I really discovered what pain is. Everything before, nasty as they were, did not come close although now I'm absolutely sure it was always this crap. First diagnosis I ever got was migranous neuralgia. Correct me if I'm wrong but that's just another name for CH isn't it? They gave me migraleve which, as you can imagine, did absolutely nothing. Been diagnosed with various other red herrings and prescribed associated useless meds in the intervening years. Increasing the verapamil every 2 days now. Got to go for an ECG when I hit 320mg a day sometime early next week. They have lowered the frequency but still getting 0 (just the once, what a day) to 6 a day with probably a third of them worthy of a 10. Man, the thoughts that come in to my head to make out with the talons. Going to wait for Dr. Evangelou's letter before I bother going to the GP (should be tomorrow). That explains the need for Imigran injections and I WILL NOT leave without a prescription for it. How do I go about getting the 02? Almost everyone here swears by it. I just swear. Can that be on prescription or is there more to it? There's been a couple of mentions of HOOFs. Is that a UK thing and can I get it from the GP? Got a fridge full of Red Bull now but going on 7 hours without a hit (my head is fried though, just burning) so don't yet know if it's going to work for me. Just checked the freezer and I have plenty of peas so I'll be trying that next time too. I experimented with the hot water bottle last time and it made no difference. Not sure if I'll spot the next one that early as my neck is constantly poised to strike. Bleeuurgh. Steve |
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