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Redd
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Hello I'm new to this site...
« on: Apr 12th, 2004, 1:23pm » |
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...and fairly new to the headaches as well. I used to have just your everyday/run-of-the-mill, periodic stress related migraines for the last 12/13 years. Beginning around Mid Feb of this year...I bagan waking up about 2 am every night to what felt like a left side sinus attack. Only these were the most intence attacks I'd ever known. My upper left teeth throbbed. Inside my left ear throbbed. The entire left side of my upper head felt like it was on fire. Sometimes it would throb, sometimes not. I would get up and swallow sudafed, and 4 tylenol PM's...and wait...in about an hour or so I would be able to go back to sleep. I'd wake up still hurting, but not intensly, head to work, and pop tylenol like tic tacs all day long. This went on till March 8th. On theis Morning the 2 am hit, but when the alarm rang at 6 am...I was in major pain...called in sick and said I'd be there the following day. I recovered, but another hit at 10 am. Then 2 pm. Then again at 8 pm. Once again the 2 am hit, and again the morning of the 9th I was incapacitated and had to call in sick again. This day same as the day before. 2 am rolled around and there I was, once again, sitting on the edge of my bed, left head in hand, crying but not really crying, praying for sleep, and to feel ok enough when the alarm went off to go to work. I woke up and I was still in pain, but not "quite" as bad, and so I forced myself to get ready. Headed to the door and opened it, the light hitting the back of my skull like daggars threw my eyes. I knew then and there I needed to see a doctor. There had never been a migrain I couldn't sleep off in a day or two, and this was no migrain I finally admited to myself. But I didn't know what the hell it was. I'd not been this down and incapasitated with anything since recovery from a hysterectomy 10 years earlier. I called in one more time and promised to go see a doctor. He diagnosed cluster headaches right away, and scripted relpax, and indomethican, and prednisone. (sp) well the indo didn't help just made me very painfully dizzy between headaches, the prednisone seemed to be what helped by lessining the severity, the relpax did nothing. So I went back to him with my report the next week and he sent me to an MRI the following week. Normal. Now I'm off work for two whole weeks, was infomed that my job was eliminated, but they could offer me a different position....well I couldn't accept due to the headaches...i had the gut feeling that the constant computer work would make matters worse were I to get one of these during the day, besides the doc wanted me off work till we got on top of these headaches, due to the long commute I had and the danger should I get an attack during the drive.  So...here I am today....after this last appointment. I am now taking lexapro for the depressin of all this, Verelin PM starting today at 300mg every night, Axert for trying to halt an attack, and imitriptoline to try to help me sleep. The headaches have seemed to have stablized to a pattern at this point. Anywhere from 3 to 5 am I'll wake up with the pain...lasts till anywhere between 6-8 am...I fall back asleep finaly. I wake up feeling burnt out and dragging my behind around the apartment. Some days not even the energy to shower and get out of my PJ's. Usually about 2-3 PM I'll get a less severe attack, lasting about an hour, then I have no choice but to nap for a bit. This has been going on for about a week now. I do see a nurse practicioner in two days at the neurology dept. Her specialty is headaches I guess...I told the doctor that this isn't funny anymore. There are no triggers that I know of...and I am about at the end of my roap with being locked up in my apartment because I can't funtion. Thanks for readiing...Redd....yeah a rare woman going on 6 weeks of hell......
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Charlie
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Re: Hello I'm new to this site...
« Reply #1 on: Apr 12th, 2004, 1:52pm » |
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Welcome and I'm sorry you have to deal with this horror. If you stick around you'll find some good ideas and some ways to deal with this thing. Others can tell you about medications. I have almost no experience there.
One thing that works for some is very vigorous excercise. It's vascular and it can work. Here are two links to a technique that worked for me and one to show friends and employers:
http://www.netsync.net/~charlies/
Though the following link you will find an letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. It's author encourages copying. It is well worth it.
http://www.ouch-uk.org/ch/note_colleagues.cfm
Gooc luck and let us know how you're doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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echo
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Re: Hello I'm new to this site...
« Reply #2 on: Apr 12th, 2004, 2:02pm » |
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Welcome to the MB. Sorry to know of yet another person the SOB has attacked. Some day we'll find where this bastard hangs his hat and ship him off to another planet and live PF.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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thomas
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Re: Hello I'm new to this site...
« Reply #3 on: Apr 12th, 2004, 3:41pm » |
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Howdy neighbor, welcome aboard, sorry you have to be here. Damn, another cheesehead turned clusterhead...... not good, not good. Read as much as you can here, if you can't sleep, i suggest melatonin. 
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Lobster
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Re: Hello I'm new to this site...
« Reply #4 on: Apr 12th, 2004, 4:04pm » |
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Welcome... random thoughts...
The 0200 timeslot is mine. Your suffering can start at 0155 or 0205... take your pick. Although my episode might be about over, so 0200 might be open for 2-3 years.
Careful taking Indo and Pred at the same time. Together they can shred your stomach pretty quickly. Ulcer-o-rama. Bad bad bad bad bad.
So Pred did not work? And Axert is not working? Hmmmm. Hmmmmmmm. One is a good short-term prevantative, the other a decent abort/escape. Hmmmm.
Lots of fine data on this site. Read read read... we all tame this beast regularly... decades of experience on these pages.
Good luck!
Rock
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Redd
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Re: Hello I'm new to this site...
« Reply #5 on: Apr 12th, 2004, 4:27pm » |
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[color=Maroon][/color] Was just scripted with the Axert today.... I'm learning slowly the verbage you use for all the technicalities...abortive...preventative.... Beast is a great term...horror another good one. I think I prefer demon to SOB or bastard. I reserve those two for the ex hubby...but then again they fit too.
I guess the main problem I'm faceing outside of my own pain...is the fact that my SO is hell bent to find out some "cure". The "reason" I'm getting these if nothing else. But from what I've read thus far there is no real difinative "cause". Some people have triggers some don't. Some have this in episodes and can remit for long periods of time while others are chronic. He doesn't seem to understand that I'm as new to this as he is...and that the med trials are a part of this. He thinks Doc is playing guinnie pig with me rather than finding the cause and dealing with it that way...I guess I can't find the words to explain to him this is not like cancer or something that they can point a finger at and then go after it. He hates knowing I'm in pain... his last IM from work to me today is "ok I'll just try to accept this as a fact of life." This is my first bout with this...I'm new to it all. I may go into a remission and not have these again for a long time...I may be chronic...I have no way of knowing yet...and it's like he wants a firm answer right here right now. I feel so overwhelmed by it all.....and you'll just have to share whatever time they hit me, Rock....Not like I have anything to say about it....
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Lobster
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Re: Hello I'm new to this site...
« Reply #6 on: Apr 12th, 2004, 5:19pm » |
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Heh heh...
For the cause, have him look up 'hypothalumus' on the net. Point at the rear roof of your mouth to give him an idea as to the location, grunting 'up that way another two inches on the bottom of my brain'.
You will note that many of the newer treatments are the modern anti-seizure meds or the like, such as Topamax. No cure, but what you learn here will give you back your quality of life.
Check this out for some med info...
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
It discusses transitional, preventative & abortive treatments, and will give you about as much knowledge into the treatment of CH's as a typical GP might have.
Keep reading!
Wrokk
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FZfan
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Re: Hello I'm new to this site...
« Reply #7 on: Apr 12th, 2004, 6:55pm » |
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Sorry you're here suffering Redd, but glad you made it. Sometimes I forget about how overwhelming it must be to suddenly be diagnosed with something you're completely unfamiliar with. I knew all about clusters when I got mine because my father had 'em.
Like other said, there's lot's to learn and you're in the right place for that. The link Charlie posted is a good one, I used that at work myself.
In all the treatments you tried you didn't mention oxygen. Read up on the proper way to use it (info button to your left) and get some immediately!! It works as an effective abortive for many of us and is really, really worth a try. Get your doc to write you a script for it. I also have the 2 am wakeup call when I'm in cycle, and I gotta tell you there is nothing better than sucking on that o2 after waking up and having the pain melt away in about 10 to 12 minutes.
Good luck in your battles with the beast and, by the way, being a woman with these is not rare. I think there are just as many women suffering from these on this board as there are men, or at least it seems that way.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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joesf
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Re: Hello I'm new to this site...
« Reply #8 on: Apr 12th, 2004, 10:12pm » |
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I have suffered with these things for 40 years. I dont take meds. Fzan is right. Get the O2. If all else fails try ice on it. I got a gel pack. If the O2 doesnt work right away, like FZan recommended to me within 20 minutes, turn it off. I tough it out as long as I can. After a while try the O2 again. It can usually knock it back then. Get through the cycle and pray it doesn't come around to visit you for a long time.
You are in good hands with the people here. You will get through this and be ok.
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HypnoticFreddy
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Re: Hello I'm new to this site...
« Reply #9 on: Apr 12th, 2004, 10:15pm » |
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Redd,
Sounds like you are starting to get depression-like symptoms along with the cluster headaches. Be sure to discuss this with whatever doctor you see next.
I think most cluster headache sufferrs here would agree that head aches specialists will use, as a firstline defense, Verapamil (perhaps Lithium in addition as well for depression?)
Prednisone also, but I hated that crap.
Abortives are oxygen and imitrex injections. Make sure you get them, and for oxygen that you get the appropiate equipment.
For me, Imitrex injections take the pain away COMPLETELY within 5 minutes of an attack.
Hope you get on the right track. You are at the right place. You will honestly learn more here at this website, between all the links to the left, reading posts (especially the medications threads), and also visiting the OUCH website. It is unfortunate, but not all Neurologists know about cluster headaches. Certainly, most GPs do not know about treatment. However, you have the power to educate them!!!
Good luck, and don't let this ruin your life. This can be managed.
-Scott
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TxBasslady
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Re: Hello I'm new to this site...
« Reply #10 on: Apr 13th, 2004, 4:12am » |
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Hi Redd,
Welcome to the board.
The others have given good advice, so I won't repeat what's already been said.
Check out the posts on Melatonin in addition to checking out the 02 option. I haven't figured out why the melatonin works.....but it does. Normally it is used as a sleep aid, but sure helps with those a.m. visits from the beasty one.
Take care, and let us know how you're getting along with the new meds.
PF vibes,
Jean
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