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(Message started by: FREDRICKS on Jan 20^th, 2004, 7:40am)

Title: new member
Post by FREDRICKS on Jan 20^th, 2004, 7:40am

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

Title: Re: new member
Post by jmorgan52 on Jan 20^th, 2004, 7:58am

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

Title: Re: new member
Post by 5-string on Jan 20^th, 2004, 8:04am

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. 8) )
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 :D ) Take care,
...Mark..

Title: Re: new member
Post by thomas on Jan 20^th, 2004, 8:12am

Sounds like clutsters........ :( I sure do hate it for you... but since you're here, welcome aboard.. :)

Title: Re: new member
Post by Edski_1 on Jan 20^th, 2004, 8:15am

Why do these things always sound so familiar and so frequently seems to be misdiagnosed????? [smiley=huh.gif]

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... :)

Title: Re: new member
Post by 357Mag on Jan 20^th, 2004, 8:35am

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

Title: Re: new member
Post by aprilbee on Jan 20^th, 2004, 8:59am

welcome! I just want to "Ditto" what everyone says!! Good luck with finding meds for your pain!

Title: Re: new member
Post by Giovanni on Jan 20^th, 2004, 9:08am

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

Title: Re: new member
Post by Woobie on Jan 20^th, 2004, 9:08am

Welcome aboard FREDRICKS.
I dont have anything to add - just read everything....
I just wanted to welcome you!

Tina

Title: Re: new member
Post by Jackie on Jan 20^th, 2004, 9:21am

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 8)

Title: Re: new member
Post by FREDRICKS on Jan 20^th, 2004, 10:53am

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.

Title: Re: new member
Post by Prense on Jan 20^th, 2004, 11:39am

on 01/20/04 at 10:53:27, 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

I'd sit still if I could...

Would prevent me from tripping/running into things.

Welcome aboard Fredricks!

Title: Re: new member
Post by cootie on Jan 20^th, 2004, 1:11pm

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

Title: Re: new member
Post by jmorgan52 on Jan 20^th, 2004, 2:07pm

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

Title: Re: new member
Post by 357Mag on Jan 20^th, 2004, 2:48pm

on 01/20/04 at 13:11:49, cootie wrote:

Dam 100 mg's of oxy.....holy crap that's alot......be careful 357Mag

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]

Title: Re: new member
Post by don on Jan 20^th, 2004, 3:13pm

Quote:

I have tried lots of medicines, but these are for Migranes

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.

Title: Re: new member
Post by cootie on Jan 20^th, 2004, 4:42pm

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 >:( >:( >:(

Title: Re: new member
Post by Hirvimaki on Jan 20^th, 2004, 5:43pm

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

Title: Re: new member
Post by BlueMeanie on Jan 20^th, 2004, 7:10pm

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.

Title: Re: new member
Post by TxBasslady on Jan 21^st, 2004, 12:38am

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

Title: Re: new member
Post by cootie on Jan 21^st, 2004, 12:58am

Pain in the ass.....hey that's my job Pam ;)

Title: Re: new member
Post by jmorgan52 on Jan 21^st, 2004, 1:33am

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

Title: Re: new member
Post by 357Mag on Jan 21^st, 2004, 6:12am

on 01/21/04 at 01:33:08, jmorgan52 wrote:

pain killers of any sort are useless for CH.

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

Title: Re: new member
Post by wip5150 on Jan 21^st, 2004, 1:41pm

*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 ;;D). 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.

Title: Re: new member
Post by Cooked Brain on Jan 21^st, 2004, 4:03pm

welcome to the board Fredricks, sorry you had to find this place but glad you did, stick around!

Title: Re: new member
Post by Charlie on Jan 22^nd, 2004, 2:44am

Welcome aboard. You'll find some good ideas here and ways to deal with this horror. Stick around and tell us how you're doing. Here is my idea: It's worth a shot.

http://www.netsync.net/users/charlies/

Charlie

Title: Re: new member
Post by Timmi on Jan 22^nd, 2004, 5:55am

Yep!It's sounds like a f@#%ing cluster headache to me.Does anyone get the feeling it's not as rare as some think?

Title: Re: new member
Post by Kevin_M on Jan 22^nd, 2004, 7:32am

Yep, get the right prescriptions for this, what you have sounds familiar.
I was rolling in the drug scene when in the early nineties began getting hit. At that time, I naturally piled on more cocaine which helped (not suggested) and also drank a few pints a day of Jim Beam because they were gone, which then again brought them around, which then led to more cocaine, daily, weighed 132 lbs.
Anyway, after swat teams blew threw the doors in '95 and, because I was so smart and learned my lesson (not) came back through in '97. Have you ever lived in a house they literally tear apart, unbelievable.
So, due to my intelligent self medicating, I've paid many, many thousands in legal fees, had originally paid my house off but then bought it twice again back from the city in drug forfeiture. Yes, paid for my house three times.
Getting clean six and a half years ago, the clusters hit full force. Lesson here being, learn to do it right or pay a price you don't want to even think about.
I am getting my medications re-evaluated because the last two bout have been most unbearable. However, now I've got a good job with good insurance and have not been late to work or taken a sick day in six years, while dealing with clusters, that is why I have been hesistant to change med prescriptions but pain and change is also important with CH.
Sorry to pour this out, but I thought on this thread I'd express the diswisdom of self medicating and getting on this board and doing it right. Found this site a little more than three years ago, been here off and on. Plan to stay, was just too stupid before, and learn and change slowly. There are many, many here that will help, and have helped me with more intelligent ways of coping and dealing. I was just relating where I lead myself on my own with CH and how this site has been a beacon in the storm.