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Topic: Who is who here to the newcommers (Read 24358 times) |
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Kirk
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Re: Who is who here to the newcommers
« Reply #325 on: May 7th, 2007, 3:11am » |
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Just to give folks an even chance. Since I haven't posted since page 2 of this thread. I have had these damn things since May of 69. Been Chronic since March of 2000. other than hanging around here since Nov-98, I have been known to do a little Fishing and Systems Engineering in the off season @newportnet.com and orcoast.com .
jonny hopes to look as good as me when he grows up 
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Tara Ann
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Re: Who is who here to the newcommers
« Reply #326 on: May 20th, 2007, 8:35pm » |
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on Mar 2nd, 2007, 4:47pm, MathenyMan wrote:Hello guys..I'm relatively new here. My name is Adam Matheny. I live in Sacramento, California. I've had clusters for about 14 years now.I'm episodic, and in cycle right now. I started with em pretty young, which sucks, cause proper dosages weren't available to me until recently. I, however, now am on Verapamil, prednisone, I have some lidocaine, imitrex shots(all out now), and plenty of oxygen. The coctail now, is usually good enough,  I guess, most of the time. But that other 40% of the time is hell. Somehow my cocktail doesn't work on certain days. I dont know if im eating a trigger, smelling a trigger or what. I thought I was pretty careful. Anyway I dont take many pictures of myself, nor do I let others take them of me, due to photogenic akwardness. So I got the only 2 pictures I had. Im the guy in both pictures. The adult girls are my cousins, the little girl is my neice(and our guitars). lol, I wish I had a picture as impressive as the texas lady with the sweet bass, but I guess that'll have to wait until this summer. Anyway PF wishes to all.
P.S. All are welcome to contact me. I love meeting new people, ESP clusterheads, it was just this week I found you all. Before that I was alone. So, hopefully I'll be hearing from tons of new people soon. Perhaps start a group a little closer to home. See yall later! |
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I love your second pic and welcome (well welcome to allthe newbies that I have neglected to welcome!) I have a fave pic of my hubby and our two kids squeezed into a booth that your second pic reminds me of. Well sorry for the ramble and welcome to the nuthouse! lmao
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MR_FLOOR
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Re: Who is who here to the newcommers
« Reply #327 on: May 24th, 2007, 3:50am » |
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Me and my youngest munchkins Trina 4 And David jr. 2
Dave
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lynnsie
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Re: Who is who here to the newcommers
« Reply #328 on: Jun 1st, 2007, 10:41am » |
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I'm new to this and not sure where to post what but I have been a ch for 3 months and I really have a hard time dealing with this. I have soo many questions?
Lynnsie
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ClusterChuck
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Re: Who is who here to the newcommers
« Reply #329 on: Jun 1st, 2007, 11:02pm » |
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on Jun 1st, 2007, 10:41am, lynnsie wrote:I'm new to this and not sure where to post what but I have been a ch for 3 months and I really have a hard time dealing with this. I have soo many questions?
Lynnsie |
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Hi Lynnsie! I am sorry you have to be here, but glad you found us!
You are close to the right area to post. This is the right section, but start a new thread. Tell us your history, describe your hits, tell us what meds you take, who you have been to see (doctors) and what they said.
Then ask any questions you may have.
We care, and we want to help!
Looking forward to your next post!
Chuck
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Almy
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Re: Who is who here to the newcommers
« Reply #330 on: Jun 4th, 2007, 7:28am » |
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Hi All
Happy to find this place. When I can work out how to do it, I'll post a pic.
I am midway through about my 4th cluster at the moment, and you know that he's just around the corner, ready to pounce any minute. Up till about two weeks ago, I really thought I'd kissed goodbye to it all.
About 2 years back I was diagnosed, but by the time I was, the cluster was over. At that time, I was given ergot spray, which was successful at first, but soon stopped working.
Anyway, I'm, 41 years old, and have 2 beautiful daughters aged 8 and 6, who now wonder why I keep disappearing for a couple of hours without explanation (I seem to be set to about 7pm, but sometimes again around midnight)
Any other Brit CHs want to get in touch, let me know.
Cheers
Alan
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michael
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Re: Who is who here to the newcommers
« Reply #331 on: Jun 4th, 2007, 1:18pm » |
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Hi Alan
I live in Nottingham. Been an episodic clusterhead for 40 years, diagnosed 9 years ago.
I only found this site in April.
Good to hear from another brit although sad you have to suffer the devil.
Mike
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Almy
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Re: Who is who here to the newcommers
« Reply #332 on: Jun 5th, 2007, 9:44am » |
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Hi Michael
40 years is a VERY long time. I hope you're free at the moment.
Since I came upon this community and the OUCH UK website, it has been an enormous relief to know that people feel the same things I do. It also puts things in perspective to see how badly some suffer.
I am already a firm convert to Red Bull (at least the cheaper variant!) as it staved the bugger off last night when I chucked a can down at Level 2. My first pain free day since the latest episode started.
Off to my GP tomorrow, armed with some great info and a feeling that I know a little bit what I'm talking about.
Best.
Alan
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Buzz
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Re: Who is who here to the newcommers
« Reply #333 on: Jun 22nd, 2007, 1:24pm » |
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Hi there
I'm 45 and have been getting clusters for about 12 years. After numerous mis-diagnosis from various GPs I researched my headaches online and went to my USELESS doctor with the results of my research, i.e. that I had many of the typical CH signs/symptoms. His reaction? "You people and the wretched internet." after which he prescribed Nurofen, not even bothering to look at my notes/print-offs etc.
I persevered with him and eventually he prescribed prednisone (after telling me that there was no way he was prepared to prescribe O2 - "we don't have the budget and there are plenty of people with more serious conditions than you". So I went private.
I met an excellent doctor who LISTENED and then went online while I was there and immediately set me up with an appointment with the London Migraine Clinic (and the splendid Dr Blau). Verapamil was prescribed and it sorta works...
I'm now about to do battle with the NHS again and hopefully will be deemed deserving of some of their budget for O2.
That's the headache story, on the 'who I am' side, I'm a graphic designer/writer/photographer. I have 2 exceptional children, one a sub editor of 19 and the other a rock musician, 21. I also am lucky enough to have a very kind, strong girlfriend who has been nothing but supportive and sympathetic. Last night, after a particularly nasty kip9/10 I noticed that she was crying very quietly; the headaches take their toll on everyone, not just me. 
Nice to meet you all, I've been reading post here for a while, thought it was time to join the forum.
I have yet another headache steaming in now so gotta go! 
Regards
Buzz
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Rosybabe
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Re: Who is who here to the newcommers
« Reply #334 on: Jun 22nd, 2007, 2:15pm » |
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HI, Linndsay, Alan and Buzz!!
Welcome aboard!!!
I am glad you found this site, keep coming back, make questions or add comments, this is your home away from home 
Hope you guys get to fell better soon!!
PFDN for all!!!!
Rosy.
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LeLimey
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Re: Who is who here to the newcommers
« Reply #335 on: Jun 22nd, 2007, 2:56pm » |
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Hello Brits!
I'm an ex Londoner (born and bred) who is exiled in Nottingham. We often have meet and greets in London so if any of you fancy coming along anytime keep an eye out on both the general board and also the meetings board.
There is one this Sunday if you want to come and join us dain bramaged freaks 
You'd all be very welcome!
Helen
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Geoff
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Re: Who is who here to the newcommers
« Reply #336 on: Jul 22nd, 2007, 11:00am » |
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So many places to post I'm very confused, and that's scarey.
Call me Geoff!
I never heard of cluster headaches until this June when I found out first hand. I was getting 2-3 attacks everyday for 2 weeks and I finally checked into a hopsital. It was the worse pain I've ever experienced. I wa taking Imitrex when an attack would occur and after leaving the hospital I was on steroids for 2 weeks and now just varapimil. I did have two lidocaine injections into my neck as well.
I didn't sleep at all those 2 weeks or even in the hospital. As soon as I tried to lie down the pain would start so I just sat at my pc and researched clusters. I guess they will come back next season.
What made it worse was the initrex was $26 a pill and I was needing 2-3 a day. That scared the hell out of me. My neurologist finally GAVE me 8 injection refills. and myt regular doc gave me a voucher for 9 free pills. I've used one injection and one pill since leaving the hospital so I've got enough for a while if the cluster returns.
I'm also researching buying fro India at only 3.79 a pill. Canada is still too expensive.
I'm waiting on my prescription for oxygen and hope it gets here soon.
Every time I feel the slightest pain starting behine my right eye, I get so scared it's going to start all over again.
Anyway, it's nice to know others understand. The F***G nursing staff at the hospital I was in didn't understand anything. Each night around 2am I would get an attack. I would come out of my room , pulling my hair out, holding my head with Both hands and wailing in pain and the stupid nurse would come and ask,,,,, "do you have a headache? would you like some tylenol?" I wanted to kill her. They never had my imitrex on the floor either so, they'd have to go down 6 floors and pick it up when I needed it. I went many times without any meds.
Welcome to the world of clusters.
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LostAgain
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Re: Who is who here to the newcommers
« Reply #337 on: Jul 24th, 2007, 1:51pm » |
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Hi, I'm 20 and I've suffered for for about 4 or 5 years.
My clusters usually occurred in the fall and winter, but this summer they've been going really bad, worst than ever.
I was taking 360 mg of Calan and had to almost stop because I was unable to train properly for football (I wasn't able to completely exert myself without being in extreme pain form trying to push myself during conditioning).
It seems I can't take naps because I'll usually wake up 20 min. later with a cluster.
I feel relieved finding this site and hope that maybe it will help.
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tnt1655
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Re: Who is who here to the newcommers
« Reply #338 on: Jul 24th, 2007, 11:39pm » |
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Hi everybody!
This is my first posting. I have been getting clusters since '91. If there is nothing else in here, it is the fact that we all know what a cluster is. I get ever so frustrated with people that do not understand the severity, and intensity of the pain. I am going through a rather intense episode these days. It is taking 6 weeks for me to get to my neurologist. My appointment is Aug. 13th. I told the girl on the phone that I might be dead by then, but she did not seem to care. I am on prednisone in the meantime.
I have downloaded the Bower letter. It really is well written.
My kids asked me what I wanted for my birthday, which is coming up soon. I told them that a good night's sleep would be good.
later,
Bud
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #339 on: Jul 26th, 2007, 10:57am » |
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Welcome to the board Bud, and while i agree it's awesome talking to people who do understand, there is SOOO much more to this board! For the night time hits, you may want to try melatonin. The night time terrors were never a real problem for me so I never had to try it but many have posted success with it, taking it just before bed time.
Do you have oxygen yet? Your gp can prescribe it while you're waiting for the neuro rferral. Hopefully the prednisone is buying you some pain free time while you wait for your neuro....but that sounds like a LONG time to be oj prednisone. If you can score some 02 it needs to be started at the first twinge of a headache, using a Non ReBreather mask, at a high flow, up to 15 LPM. (Nasal canulas are worthless, you can't get the pore 02 you need)
Welcome to the asylum, start reading like a mad man you will have to be your own advocate in your treatment. Most docs are just clueless on these things!
Guiseppi
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gmanley01844
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Re: Who is who here to the newcommers
« Reply #340 on: Jul 27th, 2007, 3:29pm » |
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Thank you for the welcome I joined last night and I already feel very welcome I am 39 diagnosed with chronic cluster headaches last July. None of the 100's of meds that I have tried even came close to working..I have already found new ideas and possible treatments by being on here..
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| « Last Edit: Jul 27th, 2007, 3:34pm by gmanley01844 » |
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GrandPotentate
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Re: Who is who here to the newcommers
« Reply #341 on: Jul 27th, 2007, 10:12pm » |
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Well, I finally figured out how to do the photos, so I guess I should formally introduce myself. My name is Jon, and I pretty well fit the classic description of the classic CH'r. I started getting these in my late 40's. The first scared the crap out of me, but then it was over. Then another the next night. I was xrayed, poked, prodded, mri'd, got prescription glasses for reading, had all my wisdom teeth yanked out, etc. I got referred to a neuro who had me pegged with migraine, even though I disagreed with him on almost every one of the symptoms he described. (My mom had migraines, so I am familiar with those). Migraine dope didn't work. The next cycle he tried different migraine dope and it didn't work.
Two big events happened in this story. My old GP (not the neuro!) finally did a little reading and said it sounds like CH. He set me up with oxygen with remarkably good results. Second, my kid's bartender referred my to this (new at the time) site. Thanks to all of you who got me through those bad times!
My old job had me traveling quite a bit (I learned three words on three trips to Finland), but travel was unbearable during a cycle. I got a new job.
I was a heavy smoker. I didn't have a monkey on my back, I had a Diane Fosse study group. But I was loopy enough during the last dope session to quit smoking without even noticing. Gained 40+ pounds, but went PF for 5 years, and got up enough nerve for a couple travels (photos are Dublin and Shanghai). I heard about a new oompah band, so I bought an old accordion and taught myself to play. I also play some serious music, but pay the bills with a good day job.
Jump to the present - the cycle came back this year almost to the day of the previous ones. So They're back, I'm back. It put the dampers on the social life for awhile - didn't go more than ten minutes from home for a couple months. I had to tough this cycle out cold turkey (finagled some O2 late), but appreciated your support! I've got a neuro now (2 days after the cycle ended), and we have laid plans to meet next spring.
In the meantime, I intend to live life to the fullest and enjoy the PF times!
 
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Jon
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thebbz
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Re: Who is who here to the newcommers
« Reply #342 on: Jul 27th, 2007, 10:16pm » |
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Nice pics Jon... 
thebb
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GrandPotentate
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Re: Who is who here to the newcommers
« Reply #343 on: Jul 30th, 2007, 9:59pm » |
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They're hard to find, I'm usually on the other side of the camera.
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Jon
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tnt1655
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Re: Who is who here to the newcommers
« Reply #344 on: Aug 2nd, 2007, 7:02am » |
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Hello again everybody,
I set myself up with O2 for the time being. A week ago, I had possibly the worst attack in my 16 years of CH. I called the Dr to inquire about getting O2, and so far have not gotten the last call from the office in our game of phone tag. They did offer to have me come in for a shot of lidocaine, but I kind of figured that if the CH was not active at that time, it would be ineffective. At any rate, two days later, I started another major attack. I went to my shop (I am a farmer, and have a fairly good shop) and turned on the cutting torch. I set the O2 regulator down and began taking deep breaths of O2, depressing the blast lever as I inhaled. It seems to help!!!! I have done this several times, now. I need to get a small bottle that I can take home, and a regulator. I am not sure how I will set up the delivery. I called a med supply and they told me that they only carry the nasal delivery equipment and that a mask was dangerous. She said that masks are to be used under supervision only. Grrrrr. The old saying that necessity is the mother of invention comes into play here.
Thanks for all of the advice, and keep posting tips.
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phil_h
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one day at a time , one headache at a time.....
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Re: Who is who here to the newcommers
« Reply #345 on: Aug 3rd, 2007, 9:10am » |
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my name is phili h- 55y/o married male, 54y/o wife/supporter laura,22y/o son/supporter jamie, 19 y/o daughter/supporter micaela............i am a recovering addict/alcoholic sober over 25 yrs . my wife is sober longer than me. my 2 kids have a few yrs sober each.........we are rich in family,recovery, miracles and love....just not material wealth.....anyway , i've had ch's - chronic from the start for about 5 1/2 yrs... diagnosed accurately after 6-7 mos. i've been on more rx's and have had more md's than you can shake a stick at !!!!!!
i've had very poor results with most meds. in november 2006 i died 3x's in 1 day , from a fatal overdose of blood pressure meds....norvasc + toperal and a very high dose verapamil............mds said this cocktail was ok and these meds worked on different mechanisms and would not be a problem........... they were wrong....3 weeks later my pulse hit 20 ,then stopped.......... revived 3x's , coma ,double pneumonia and a 3 week stay in hospital , i had to seek a medical support team........... i'm now on prednisone - 90 mgs down to 5 mgs over 3 mos -this will continue , wellbutrin 150 2x's daily ,trazadone 100 mgs for sedative effect....i now can get 5-7 hrs of sleep most nights , o2 ,coffee , red bull/amps and meditations......
this is a great improvement.........................
i found this bd in '03,joined 8/04...thanks 4 being here..
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #346 on: Aug 3rd, 2007, 11:48am » |
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Dang Phil, welcome to the board and congrats on the blessing of a little more time in this life! Your post is an excellent reminder of how important it is to take an active role in our health care, including monitoring drug interactions. Even the best of the best make mistakes!!!
Glad you're still with us, welocme to the nut house!!
Guiseppi
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tnt1655
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Re: Who is who here to the newcommers
« Reply #347 on: Aug 3rd, 2007, 1:02pm » |
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While waiting to see my Neuro, I contacted my local Dr. office about getting O2, as I have read good things things here. Five days later, I got a call back from them. They want the info that I have. They know nothing about O2 for clusters.
Keep posting.
Bud
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #348 on: Aug 3rd, 2007, 2:19pm » |
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On the left side of the board, just above the yellow tag that says OUCH website, is a tab that says oxygen info. Click on that and start printing. It has all the nfo your doc will need to justify prescribing it, and the info you'll need on how to use it correctly.
It worries me that he knows nothing about 02 therapy as it should be your FIRST line abortive. Many many many benefits with no side effects. Good luck!!!
Guiseppi
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rollingroscoe
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Re: Who is who here to the newcommers
« Reply #349 on: Aug 5th, 2007, 1:36am » |
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Hey there fellow Clusterheads. My name is David. I'm 48 years old and have been experiencing these fun little Thunderf@#*s for over 30 years now. I'm in the midst of another excursion to the limits of my tolerances and my poor wife stumbled up this AWESOME site and told me about it. I first started reading the stories and couldn't help but tear up. Finally a group of people who know and actucally feel what the hell I go through for real. What a releif!
I see a wealth of information and support here.
Well, I hope to be done with this trip soon! I'm using an herbal remedy to abort. Has been working well as far as keeping the attacks as short as possible. Usually 10-30 mins, sometimes longer, sometimes shorter. Sure as hell beats hours. I still get multiple attacks on the same nights though. O2 might be a good thing to try and the H2O therapy looks like another great idea.
Bye for now. If I can ever be of support or help to anyone please feel free to shoot me (an email). Ciao for now,
David
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| « Last Edit: Aug 5th, 2007, 2:06am by rollingroscoe » |
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