|
||
|
Title: Thank You! From my Philippines mountain top. Post by steveinthephils on Apr 14th, 2006, 10:09pm Hi Everyone! I'm Steve, a 45yo British guy who lives in a very remote location with my wife and 6yo son in the Philippines. We are so remote there are no phone lines, no 7/11 or Mcdonalds or restaurants. Just half a dozen foreigners and 35,000 locals in a farming community up in the mountains. I'm a web designer and using satellite internet and TV sit up here with my little family enjoying a quiet, clean unspoilt life - or so I thought! My work cycle is usually a week of working at a screen with little sleep to finish work for overseas clients. Then I send the bill, get paid on the spot, and kick back my heels for a day or so, have a few beers to unwind etc. A month ago I finished a 10 day marathon of work with a ton of stress. I delivered the work and visited a Norwegian friend for a few quiet afternoon beers. Two beers over two hours, dinner for an hour, opened a third beer... And experienced my first cluster headache!! My poor friends (and I) had no idea what this was. The first thought was a stroke! 8pm they rushed me to the only doctor within miles (forget about hospitals - there aren't any here). The doctor, a gynacologist, took my blood pressure, the symptoms had gone anyway by then, and advised I get new contact lenses. In the absence of any medical advice I trolled the internet, reading about strokes and other life threatening conditions. I plunged into the fear of knowing I had no medical insurance - no money for hospital (which is not free here) and if I left this world now I had nothing much to leave my family. Then it happened again, and again, and again... On one occasion it was so bad (it woke me from sleep) that as well as wandering around yelling I trashed half the bedroom. My wife is 23 and has been with me 5 years. She is wonderful and knows I would never raise my hand to her or my son. But watching my young son, who worships me as a hero, his strong daddy, in this condition, was more than they could take. They left to stay at their mothers for a week and I was left alone and in despair at what this demon was. Then I discovered cluster headaches at http://www.headaches.org/consumer/topicsheets/clusterheadache.html I can't tell you the elation. I'm not going crazy. I'm not dangerous. I'm not waiting for a stroke to knock me down. I have something that is hell on earth but I know what it is and there is some hope of treatment or relief! Then I find this site and have read top to bottom. Apart from the amazing knowledge that nobody where I live can give me - the ability to talk to others with this and share and be part of this community is a special gift. Thank you so much. I almost feel guilty now when I've had 45 pain free years that so many of you have not. I've not tried any medication - I'll need to make a day trip to the city and see what if any I can find. Fortunately, here in the Philippines, if you are a foreigner, and can spell what you need - pharmacies will sell it without a prescription - you just say you're on holiday and your doc at home normally gives it. Sorry if that sounds like abuse but after reading up I plan to start from the shallow end and work up through the medicines list. I'm not a medicine kind of guy - I like to ride out colds and flus and the usual headaches and have a strong immune system and metabolism. But the CHs I've had - this is out the window - I really hope I can find some pharmaceutical relief. Thanks again to my new family and sorry to ramble - but I feel like I've been in a desert and found an oasis! Steve |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Barry_T_Coles on Apr 15th, 2006, 1:03am Hi Steve Barry from just a little further down under than you, welcome to the best little nut house around. This site simply is just awesome with people who share the agony. Have a good read of the links to the side there’s very valuable info there. A couple of beer’s and bang out of the blue you get the shit kicked out of your head sounds all too familiar and typical. You say your not keen on the medication thing, well I’m the same so I go the oxygen as an abortive: I don’t know how easy it would be to get where you are but for me it works a treat as does Red Bull for the lower scale hits. The link below is some info on how to obtain O2 in Oz but may be useful to you. http://mushys.com/kiwi Kind Regards Barry |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by RichardN on Apr 15th, 2006, 2:43am Hi Steve and Welcome Another vote for 02 here. Works for 60-70% of us to abort. I can kill the beast in minutes if used early-on in the attack. He tends to get a better hold on you for the night hits before you wake . . . might take 15-20 min. . . . .but it's been quite a while since I had to "dance". How frequent are your attacks? Day and night hits? Duration? If you're not keeping a journal . . . start one now. Alchohol is a major trigger for me (and MANY others with CH) . . . . quit 2/02 after finding this site. . . . with the exception of occasional sips wine or brandy (a real drink of either will bring on a shadow within 15-20 min). How do you deal with your attacks? Do you have an understanding of what causes the pain? You have much reading to do and many questions to ask . . . fire away. You've hit the motherlode of CH information and found a great bunch of caring/sharing folks who truly know your pain. Be Safe, PFDANs Richard |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by nani on Apr 15th, 2006, 5:24am Welcome, Steve. Sorry you have to be here. While you're doing all this reading, be sure to read up on kudzu. http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 Read it all. I'm a fan of oxygen, too. With the right set-up, it can be very effective. pain free wishes, nani |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Jasmyn on Apr 15th, 2006, 7:17am Hi and welcome Steve! I'm glad you found us and like everyone said, read and read more. You are not crazy and you are not alone. Try to get your wife to join you here, she can also do with some understanding of this condition and support. As I am myself in a third world country, I do understand the limitations regarding medical care. O2 is great, if you are able to get it and a supplier that will re-fill. I haven't found one here yet. Good luck to you out there and ask away if you have any questions. |
||
|
Title: Re: Thank You! From my Philippines mountain Post by steveinthephils on Apr 15th, 2006, 10:40am Hi Everyone, Thanks for the quick replies and words of support. Barry: >A couple of beer’s and bang out of the blue you get the shit >kicked out of your head sounds all too familiar and typical. Exactly what happened / happens and scary if you don't know why. OK, alcohol is off the menu - not a big issue as I can keep my cigs and caffeine! ;-) I saw your note on Red Bull also. Now that I CAN get here by the carton! This forum is great - you just don't find tips like these elsewhere I'm sure I lived many years in Perth by the way, Oz is a lovely place... Richard: Thanks for the PM you also sent - I'm chasing up some O2 now. >How frequent are your attacks? Day and night hits? Duration? >If you're not keeping a journal . . . start one now." Will start on the journal - for now 2 or three days a week. Half the time in the day and the other half waking me from a sleep. The latter is always the worse one as it blindsides me. They last 90 mins to 2 hours max. >Alchohol is a major trigger for me Absolutely - one glass of beer and I can feel it coming on... >How do you deal with your attacks? After the first couple, and chewing paracetamol, mefanamic acid and the usual OTC painkillers had no effect I found the carotid in my throat on the same side really pumping. It helped a little to tilt my head back hard and squeeze the carotid to the point of near passing out. I thought if I could limit the blood entering the brain and hasten it leaving... I had no idea then it was CH. Don't know what looked worse to the wife - yelling and pacing, or staring at the ceiling strangling myself! ;-) Gotta keep some sense of humor for sanity sake.... >Do you have an understanding of what causes the pain? Starting to now that I'm reading, reading, reading... >a great bunch of caring/sharing folks who truly know your pain. Totally feeling at home, thanks everyone... Nani: >While you're doing all this reading, be sure to read up on kudzu. I did and thanks for the tip. While not as lucky as the folks in Alabama, if it has a Chinese origin then I'm sure at China Town in Manila I can find some. Jasmyn: >Try to get your wife to join you here She'll be home tonight from a day trip with her family and I'm just itching to show her... >As I am myself in a third world country, I do understand the >limitations regarding medical care. O2 is great, if you are able >to get it and a supplier that will re-fill. I haven't found one >here yet. Sorry to hear that. I have an American friend here, albeit miles away, who used to run a hospital catering for US military retirees on US govt insurance. They were always wheeling out bottles to remote parts for old vets in their last days and I've messaged him for advice. But odd you can't get O2 there? State of the art meds I can understand but not even the hospital suppliers? Thanks again everyone! Steve |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Icey on Apr 15th, 2006, 2:16pm I had to laugh at the strangling part :) the things we do to try and stop the pain |
||
|
Title: Re: Thank You! From my Philippines mountain Post by Gator on Apr 15th, 2006, 7:04pm Welcome Steve. Sounds like you are doing your homework. Good for you. There's tons of good info here. While it sounds like you are dealing with the same devil as we are, I really wish there were some way you could get an MRI to make sure there is nothing sinister going on in your noggin. While CH isn't necessarily dangerous there are things that can mimick CH that are. If you do have CH, I'm not sure what you can get where you are, but this document outlines some of the more popular and effective medicinal ways of treating it. http://www.brightok.net/~mnjday/chtherapy.pdf You may have to do some research as meds frequently have different names in different countries. For instance, Imitrex (in the US) is called Imigran in the UK. Here are some non-medicinal treatments you might find helpful. Some sound weird and I have not tried a lot of them, but they helped at least a few sufferers. http://www.ouch-us.org/chgeneral/nonmed.htm Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Check for interactions at some the drug websites like: http://www.rxlist.com http://www.drugdigest.org/DD/Home/AllAboutDrugs Better safe than sorry where your health is concerned. I did some training in the PI in Crow Valley (near what once was Clark Air Base) back in 1989. Some extremely beautiful countryside there. I hope you can find a way to get a firm diagnosis and the necessary treatment for your head. Good luck and keep us posted on your progress. The light is always on here. Come in anytime and pull up a chair and tell us the latest goings on, rant, rave whatever works. You've found a group of people who intimately understand your pain. Mike |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Jonny on Apr 16th, 2006, 11:29am on 04/14/06 at 22:09:53, steveinthephils wrote:
And your 45? You are a hero in Jonny world....LMAO ;;D Best of luck to you!! |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Richr8 on Apr 17th, 2006, 6:54pm Hi Steve, I am very glad that you found this place. Unfortunately, this is as good as it gets when you have CH. I haven't seen any miracle cures here, but folks respond with varying degrees of success to assorted remedies. You have received lots of good advice. Keep reading all that you can and put together a tool box that works for you. Personally, I can't say enough about O2. It aborts about 60-70% of my attacks within 10 minutes. Beyond that Prednisone tapers and Verapamil (240mg) seem to get my cycles under control, however, I will be looking for an alternative solution for my next bout. Prednisone is just too damaging in my view. |
||
|
Title: Re: Thank You! From my Philippines mountain Post by steveinthephils on Apr 18th, 2006, 2:33am Hi Everyone, Icey: >I had to laugh at the strangling part... I'm still building our office / data centre here and until we're 100% done, we use one room for a bedroom so I'm here on deck 24/7. I had to sit the staff down and show them this website and explain my condition. Most important was to tell them if they hear yelling and head banging in the bedroom not to worry - I'm not about to run out with an axe or anything... ;-) So far they're pretty cool about it... Gator: Thanks for the warm welcome - yes the info is great... >there are things that can mimick CH... I'll see if I can get access to the MRI that the US retiree vets use about 100km from here. Better safe than sorry but you know, everything I read about experiences is just so spot on to what I'm experiencing... >http://www.brightok.net/~mnjday/chtherapy.pdf A great resource now in my printed stash - thanks >as meds frequently have different names in different countries Very much the case here - but Google always finds 'em >http://www.ouch-us.org/chgeneral/nonmed.htm Great. I'm itching to try the O2 and hope it works - next on the list would be the non-pharma ones like this. I guess we're a mutual society of guinea pigs!! >I did some training in the PI in Crow Valley > (near what once was Clark Air Base) back in 1989. >Some extremely beautiful countryside there. VERY close to where I live. In a nutshell, you probably know Mt Pinatubo erupted in 1991 devastating the area around Clark. In our nearby town of Bamban, 30,000 people lost their homes to lahar (lava mudflows). To relocate them, they took a chunk of virgin jungle from the same former US military reservation as Crow Valley, but 10km East, and made it a resettlement area. That's where we live up the mountain and why is it unspoilt - military reservations never got slashed / burnt / logged / farmed out like all the countryside nearby. You may have trekked over the site of our little town back then... >The light is always on here. Thanks again... Jonny: >You are a hero in Jonny world.... Well, certainly a very lucky guy to have such a wonderful partner. The age difference very rarely makes any difference in our relationship but I did worry about giving her the unfair baggage of my CH at her younger age - but she handles it like a Trojan. Richr8: >put together a tool box that works for you. So far I still have nothing so it can only get better. >Personally, I can't say enough about O2 So many are praising O2 - time to ring my friend again and see how progress is on my bottle! Thanks again everyone Cheers Steve |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Dragnlance on Apr 18th, 2006, 9:52am Welcome to your new home. Sorry you have to come here, with the rest of the brain damaged people around the world, but here we are. I have only one last piece of advice to try, that (I may have missed) didnt read. Have you tried Kudzu? It is an herb, but sometimes not available in all areas. Kudzu root has done wonders for this chronic clusterhead. Anyway, Welcome and hope you are pain free soon! Dragn |
||
|
Title: Re: Thank You! From my Philippines mountain Post by Jasmyn on Apr 19th, 2006, 3:58am on 04/15/06 at 10:40:42, steveinthephils wrote:
They get supplied and refilled from South Africa and with border controls and the hospitals always running out, it is a scarce commodity that no medical facility want to part with or share. More precious than gold here. Hope you get set up with O2 soon. |
||
|
Title: Re: Thank You! From my Philippines mountain Post by steveinthephils on Apr 20th, 2006, 6:37pm Hi Guys, Dragnlance: I'll for kudzu when I'm in the China town part of Manila next - it's a 100km trip but worth it by the sound of it and if it's a Chinese herb it should be there. Sadly I've seen body parts of endangered anumals for sale there so a herbal root should be easy to get. Jasmyn: OK, now I understand. Hope you can find and stockpile some at some point. Otherwise I read your post on the Mozambique coffee - max out on it! DJ: You got me scratching my head. I re-read my earlier posts and can't figure why you'd want to send me pics of an Asian guy with a long schlong? Maybe his increased circulation brings on his CH attacks? Look's like he's suffering... ;-) Cheers Steve |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Jasmyn on Apr 22nd, 2006, 3:30am Hi Steve that (DJ.) was not our DJ, our (DJ) will never do something like that. This DJ. has been removed from the board. |
||
|
Title: Re: Thank You! From my Philippines mountain top. Post by Charlie on Apr 25th, 2006, 5:39pm Hi Steve: Thought I'd better welcome you here too. I was like you when I first got this horror. I knew I was a gonner or some kind of houseplant for the rest of my life. http://www.netsync.net/users/charlies/gifs/scare white.gif Geeze these guys know so much more than I so take them up on advice. Gator's post had just about everybodys good ideas. Keep posting and pain free for the next 700 decades. http://www.kolobok.wrg.ru/smiles/standart/ok.gif?SSImageQuality=Full Charlie |
||
|
Title: Re: Thank You! From my Philippines mountain Post by steveinthephils on Apr 25th, 2006, 10:59pm Hi Charlie, The gang here have given me so much so quickly I'm really touched. Most importantly: 1. I have a clear understanding of what I have and how it affects my body - the fear of a shorter lifespan is gone 2. There are so many things written up that work for some in different ways - O2, H2O, Kudzu, Ice, Imitrex, Red Bull etc etc - I can experiment and look for preventatives / abortives that work for me - there is hope 3. Somebody else knows what I go through and I can talk to them. I don't get yet another well meaning friend saying "I get headaches too - just go sit outside in fresh air for a while!" ;-) Thanks again and good luck with the struggle at your end Cheers Steve |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |