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FREDRICKS
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Hello everyone,
i have been suffering with headaches no for about 8 years. i get them every 2 years around this time and last for around 4-6 weeks. the pain is unbearable and
have seen a neurologist who thinks it is a rare form of migrane. After looking into both migrane & clusters i think my symptoms are more like cluster. You help would be much appreciated if you could let me know if the symptoms are the same as yours
*Pain only in right side of face over and behind the eye
and moving up the forehead
* attacks last for 20mins - 2 hours
* between attacks have a numb pain in eye
* have upto 3-4 per day alot of time in the night
* the first couple i have are fairly mild getting worse as
the days go by
* feel exhausted after an attack
I have tried lots of medicines, but these are for Migranes
Does anyone have any suggestions for me, apparently
oxygen ??????
Thanks for reading
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JohnM
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Re: new member
« Reply #1 on: Jan 20th, 2004, 7:58am » |
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Welcome to the board. Sorry to have another person suffering though. Try and read as much here as you can. See the "buttons" on the left of the main page for more info.
From what you write is seems like the same symptoms most of us here get.
Imigran (Imitrex) injections work best for me as an abortive, but many use Oxygen to abort the headache. There is lots of info on both of these here. Also lots of info on preventatives, although I personally have yet to find a preventative that has any affect on mine.
John
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5-string
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Re: new member
« Reply #2 on: Jan 20th, 2004, 8:04am » |
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Hello Fredricks,
Sorry your suffering.
It sure sounds like it could be cluster headaches to me.Did you take the survey on this sight? and the cluster quiz. That should give you a better understanding.(of course experiencing them is the most effective way to understand them.  )
Medication works differently for different people. For me, Verapamil pulled me out of my cycle. Imetrex is a great abortive for me. o2 is a great abortive and it's natural.
Stick around...alot of wisdom to be found here(once you quit reading my post  ) Take care,
...Mark..
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thomas
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Sounds like clutsters........  I sure do hate it for you... but since you're here, welcome aboard.. 
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Edski_1
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Re: new member
« Reply #4 on: Jan 20th, 2004, 8:15am » |
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Why do these things always sound so familiar and so frequently seems to be misdiagnosed????? 
That's the thing that's friggin' confusing me. In my 13 years of "remission I might have had one of these headaches a year...so ignoring it could be done...a 3-5 day cycle...it's going to be tought to get a handle on it...
4-6 weeks. Man, I can feel it. I think my Cycle is at least going to sleep from the topamax (topiramate)...not sure if it's truly "gone" or not yet, but it's been since October. My Wife and I have been with each other since 1999, so this was her first experience with the Beast and I, and she was very understanding. Looking back she figures that my first wife probably wasn't and the CH's possible played a role in the failure of that marriage. Funny thing is, since they were misdiagnosed, I never really considered that!
Anyway, a lot of good ideas on the board, and on the internet. Imitrex seems to be the abortive of choice, but if you can't handle injections, there are other choices. Basically, Triptans are the best abortives it seems now...and preventatives/cycle busters are being found all the time. I seems to be one of the growing number of people who are having success with anti-epileptic drugs for stopping the cycles.
Read the posts on this site, as well as do a search on Google or MSN for Cluster Headach Prevention or Cluster Headach Treatment and you shoudl find plenty of reading...
And good luck. YOu will find PFDAN...
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magman
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Re: new member
« Reply #5 on: Jan 20th, 2004, 8:35am » |
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Hi Frediricks,
Sorry you are encountering the Beast. I too, am a new member as of today. Found the site yesterday and have been reading and relating in between attacks.
I can still remember my first fight with the Beast back in 86. The docs in NH diagnosed Migraine and that has followed me to VA. Back then, and I don't know if this is possible, I was 'chronic'. The last 5 or 6 yrs has switched to 'episodic'. Maybe that is the reason for the mis-diag.
I have been on so many meds I doubt I could name em all. Only pain meds that work without rebounds are 100+mg oxycontin. DHE nasal spray used to work but now only provides false hope.
I am finally going to see my Neuro fully armed!! With info from this web site, I intend to spend a lot more than 5 minutes in his office, to come up with a plan. A plan to treat CH and not Migraine.
Welcome to the board, and hang in there. Hope abounds when family is near.
Peace,
-357Mag
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aprilbee
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Re: new member
« Reply #6 on: Jan 20th, 2004, 8:59am » |
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welcome! I just want to "Ditto" what everyone says!! Good luck with finding meds for your pain!
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Giovanni
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Re: new member
« Reply #7 on: Jan 20th, 2004, 9:08am » |
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Hello Fredricks,
Sorry to see you here, but welcome.  Your symptoms sound like clusters to me. When your under attack do you want to just lay down or get up and move around. Most of us clusterheads do the dance and can't be still.
Anyway, to reiterate the above, imitrex injections work well on most of us to abort single headaches. Works with me in less than 5 minutes if taken early enough. Also, check out the melatonin links on this board. Some of us have had good luck with this and is readily available without RX.
Good luck to you.
John
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Woobie
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Re: new member
« Reply #8 on: Jan 20th, 2004, 9:08am » |
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Welcome aboard FREDRICKS.
I dont have anything to add - just read everything....
I just wanted to welcome you!
Tina
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Jackie
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Re: new member
« Reply #9 on: Jan 20th, 2004, 9:21am » |
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Welcome to the site, Fredricks.
Sorry to say your symptoms do sound like clusters... 
Study this site and OUCH. There is a wealth of information to be had. This is a great group....always ready with a helping hand.
Good luck,
Jacks
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FREDRICKS
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Re: new member
« Reply #10 on: Jan 20th, 2004, 10:53am » |
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Well, if only my doctor was as helpful as you lot. I would just like to say thanks to everyone for the help and information. one thing that seems different is i try to keep still when having an attack where the common
thing is 'bang your head up a brick wall' although the pain prevents me from keeping still, this is what i feel like doing. I have done both the tests on the sites and this has come back as Cluster so a trip back to the doctors is in order to try some Imitrex and i will be armed with all your comments.
Thanks again , i will keep you posted.
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Prense
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Re: new member
« Reply #11 on: Jan 20th, 2004, 11:39am » |
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on Jan 20th, 2004, 10:53am, FREDRICKS wrote: one thing that seems different is i try to keep still when having an attack where the common
thing is 'bang your head up a brick wall' although the pain prevents me from keeping still
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I'd sit still if I could...
Would prevent me from tripping/running into things.
Welcome aboard Fredricks!
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cootie
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Re: new member
« Reply #12 on: Jan 20th, 2004, 1:11pm » |
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Hi FREDRICKS.......mite wanna try and print sum of the informative info out on this site ment to take to a doc if you need to.......kick his knowledge in the ass technique ! Good luck to ya. Dam 100 mg's of oxy.....holy crap that's alot......be careful 357Mag Pam
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JohnM
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Re: new member
« Reply #13 on: Jan 20th, 2004, 2:07pm » |
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Fred
Something to bear in mind when you see the Doc. Imitrex come in 3 forms - Pills cheapest, Nasal Spray more expensive, and Injection (auto injector kit is easy to use) most expensive.
But... I have tried all 3 and only the inj works (aborts in les than 10 mins) The others are more hit and miss with the pill taking an hour or more (or not at all) and this is pretty useless for me. The nasal spray did nothing for me.
Try the inj
John
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magman
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Re: new member
« Reply #14 on: Jan 20th, 2004, 2:48pm » |
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on Jan 20th, 2004, 1:11pm, cootie wrote:| Dam 100 mg's of oxy.....holy crap that's alot......be careful 357Mag |
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Yea, 18 yrs of mis-daig [they think Migraine not CH] and pill-push'n docs has raised my resistance to pain meds something fierce. Anything with 'cete' perc, darv, etc., or codine-laced only causes rebounds.
Done a lot of sefl-medication, espescially after dad passed away and I crabbed all of his cancer pain meds. Oxy kills the pain quickly without stomach upset or rebounds. And believe it or not, after self-med'ing with 4 different strengths of oxy over a 5 month period I did not develop an addiction.
My Neuro says he will give me Oxy but i have to come in for a visit. I am sure he thinks all i want is meds. I have news for him....I want releif, avoidance of attacks and pain. But, if pain comes, then it must be Oxy to fight it.
Been dealing with this episode since mid Dec now and not sure how much longer I can go on. Called the Neuro last Friday and they wer kind enough to schedule my appointment 11 days out. Looking at the averages, I only have to deal with another 20 to 35 attacks BEFORE I see the Neuro.
O HAPPY DAYS!! Since life is so wonderfull, Idecided to get drunk today. Have the tunes cranked and the Henie's are flowing along with the Topomax.
Peace all,
-357Mag [its loaded]
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don
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Quote:| I have tried lots of medicines, but these are for Migranes |
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Almost all effective CH meds are marketed as Migraine meds. What makes the differance is the prescribed dosages.
Your description sure sounds like CH to me.
I would not suggest any particular med to you as that is the neuros job, but what has worked for me (I'm episodic) is imitrex injections and verapimil. If the verapimil doesn't break or alleviate the cyle I add a prednisone taper to the equation. All else fails it's inpatient for a DHE drip.
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| « Last Edit: Jan 20th, 2004, 3:16pm by don » |
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cootie
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Re: new member
« Reply #16 on: Jan 20th, 2004, 4:42pm » |
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Yeah 375 Mag if yer careful you can keep pain meds workin.....long as ya don't do em daily too long but then oxy is prescribed for daily use period. But to get up to 100 mg's I'd be afraid yer neuro won't even prescribe that much. Supposdily 'above' 80 mg's is reserve'd fer cancer patients or extreme cases needin it daily. Good luck with yer neuro apt......AND last but least........."hide yer freakin meds' cuz I got all mine ripped off by a close friends druggie girlfriend last weekend......she got two back to back scripts I had stashed !! The more I think about it the more pissed I am gettin Pam
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| « Last Edit: Jan 20th, 2004, 4:44pm by cootie » |
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Hirvimaki
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Re: new member
« Reply #17 on: Jan 20th, 2004, 5:43pm » |
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Fred,
I'm sorry you have to be here, but this is the place to be for support and understanding for CH.
Read, read and READ. And don't be shy about asking for help. I'm a real pain-in-the-ass and most people on here still help me out when I need it.
The best of luck to you!
Hirvimaki
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BlueMeanie
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Welcome Fredricks.
Sorry to hear the Beast is back. Sending vibes in hope that this cycle will be a short one. It sounds like the abortives of choice have been mentioned. O2 & Imitrex. Read up on prevents. Lots of different choices for Clusterheads. Prevents seem to works for some, but not others.
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TxBasslady
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Re: new member
« Reply #19 on: Jan 21st, 2004, 12:38am » |
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Hi Fredericks,
Can't add to what has been said, so I will just say Welcome to the board!
Keep in touch....
Pf vibes,
Jean
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cootie
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Re: new member
« Reply #20 on: Jan 21st, 2004, 12:58am » |
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Pain in the ass.....hey that's my job Pam 
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JohnM
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Re: new member
« Reply #21 on: Jan 21st, 2004, 1:33am » |
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Hi Mag 357
In my opinion, after 30 odd years as a sufferer, pain killers of any sort are useless for CH. Stay away from them, they will fuck you up and most probably cause rebound HA's anyway so you get into a vicious HA circle. Get onto triptans like Imitrex to abort a CH rather than painkillers. Many have success with preventatives like verapamil, (but they do nothing for me).
My best way of breaking a cycle, which has worked for my last 2 episodes in May 2001 and Dec 2003 is a strict detox diet of only fresh fruit, vegetables and water for at least 2 weeks. On both occasions it broke my cycle within the first week. I am not entirely sure how it really works, but it may rid the body of HA causing toxins, or the initial very rapid weight loss incurred may shock the system to somehow break the cycle. Read my post on the meds page for more details:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1073982938
John
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magman
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Re: new member
« Reply #22 on: Jan 21st, 2004, 6:12am » |
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on Jan 21st, 2004, 1:33am, jmorgan52 wrote:| pain killers of any sort are useless for CH. |
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Thanks John, I will read your post on the meds page. The Oxy use came as a fluke really.....from the outset, we have been trying to do preventative, abortive and pain control. Everything ran thru its useful cycle of 'working'.
After dad passed on, I ended up with his meds just prior to a 3 month episode. My Neuro, still treating with the some ole useless meds was of no help. That is when I decided to jump into that bottle of 100mg Oxy. The episode was still 2.5 months in duration, but livable because of the Oxy.
Oxy has been gone for a long time now and I take no pain meds. Only thing i really have in my arsinal at this point in time is Xanax, Effexor, and Topomax. But the dosages have been set too low. Yesterday I decided to see what happens with topo [dose x 4 x 2]. So far, so good. 32hrs PF and counting.
Peace,
-357Mag
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wip5150
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Re: new member
« Reply #23 on: Jan 21st, 2004, 1:41pm » |
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*sniff, sniff* Smells like you may have clusters - bummer
I'm not really going to add anything substantially different from everyone else - just keep trying to find a sympathetic doctor. I use Imitrex 20mg Nasal for aborting individual headaches with 60% success. After a while though, rebound headaches can rear their ugly head and, IMO are worse than the initial headache.
My cycles occur about every 18 months and last about five weeks and I've been dealing with them for 16 years (since I was 19 - you do the math  ). Each of us have our own methods for tussling with the shit-ass beast. Take a poke around the site and you'll find some useful information.
In the past I've rarely posted even though I've been around the board (old and new) for about five years. So, this year as part of my New Year's resolution, I've committed to being more of an active participant on here - Lord knows I've received more than a few ideas on here, it's time to give back.
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Cooked Brain
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Re: new member
« Reply #24 on: Jan 21st, 2004, 4:03pm » |
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welcome to the board Fredricks, sorry you had to find this place but glad you did, stick around!
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