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lolli28147
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I'm a newbie... :)
« on: Jul 23rd, 2003, 9:55pm » |
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WOW! what an awesome site! I was recently diagnosed as having Cluster Headaches. (A little over a month ago...) I've been having what I call my "face pain" since I was about 16. It would come and go...now I'm 22 and the mother of an almost 2 year old. The pain has started coming more frequently, is more intense, and last anywhere from 15 minutes to over 3 hours. I had told my doctor for forever that I thought something was wrong...they just kept telling me that it was all sinus related...I told them they were wrong...but they didn't listen. Anyway, One night when i was up til after 3am I went online and began researching. My mother-in-law had told me for the past year that she thought that I had either TMJ or neuralgia. I knew that I didn't have enough symptoms for it to be TMJ, neuralgia on the other hand, I knew NOTHING about. I found a wonderful site that looked like I could have written it myself. I swore that I had a type of facial neuralgia called "Atypical Facial Pain". I went to the doctor again the next day and she wouldn't even look at what I had printed out. (She flat out told me that she "didn't have time to talk about my face".) I asked her what I was supposed to...I had a baby and wasn't getting enough rest, the pain was crippling and I couldn't move, talk or do anything when it came on because it made it hurt that much worse....ANyway, I switched doctors after that episode...especially because she told me to go home and take 3 Advil, 3 times a day for 10 days (in essence, a total of 90 pills in a ten day period...). My new doctor is wonderful!!! He was the one who told me about Cluster headaches. After doing some online research, I'[ve discovered that my symptoms are also very similar to Cluster Headaches. I was prescribed Ultracet. which helped at first but now only takes the edge off when the pain starts. I've also found that heat helps... Now that I've told my life story... I'd like to say hello and that I'm glad that I've found this site! Maybe now, when I'm up at 3 or 4 in the morning I will have people to turn to who really know what I'm going through!!!  thanks for listening!
And I'm open to all suggestions on how to treat this pain.
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cootie
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Re: I'm a newbie... :)
« Reply #1 on: Jul 23rd, 2003, 10:45pm » |
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Hi lolli28147.......hope you find the help you need here........there's loads of info I'll tellya that much ! Glad you got a better doc that seems to care. Good luck to you !! Pam that hopes you to be PF soon
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Ree
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Re: I'm a newbie... :)
« Reply #2 on: Jul 23rd, 2003, 10:58pm » |
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Welcome Lolli...Glad you found us ... Sorry you hurt!  Does the doc have you on a preventative??? let us know what meds you are on and what treatments work for you... maybe we can help you or you can help us... I am a supporter, my husband is just beginning his cycle. Good luck and again Welcome... Ree
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Patrick_A
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Re: I'm a newbie... :)
« Reply #3 on: Jul 23rd, 2003, 11:00pm » |
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I am sorry to hear of your pain Lolli, but i welcome you to the CH site with open arms. There is so much information here and there are also many helpful people. If you ever need an ear, dont hesitate to reach out to me.
I wish youPain Free days, Patrick
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paul_b
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Re: I'm a newbie... :)
« Reply #4 on: Jul 23rd, 2003, 11:00pm » |
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Welcome. Lots of good info and good people. "Venting is highly recommended " feels good to know that others can relate to the pain you experience. Many have found great success with O2 and Imitrex. Check it out.
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lolli28147
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Re: I'm a newbie... :)
« Reply #5 on: Jul 23rd, 2003, 11:27pm » |
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Ya'll are awesome! It's nice to know that there are people out there that can relate and understand what I'm going through My doctor put me on Ultracet and also on Vioxx. The Vioxx didn't help at all and the Ultracet DID help (did being the key word) at first. Then I guess the medication really got into my system and now it doesn't really help. I've been doing farely well this past week. Not too much pain and when it does come, I've been lucky that it hasn't been staying as long as it usually does. I have a wonderful fiance. We've been together for almost 7 years (yep, since I was 15 ). We have a child together (my son will be 2 next month). When I start to hurt, it seems like that's the time that the baby wants to play! My fiance has been really good at keeping him busy for me though. I don't think he understood how bad the pain was until around 11pm one night he happened to be awake and witness an "attack". I was bawling like crazy, holding my face, and couldn't move. Since that night, he's been much better about the CH's and I think he takes them more seriously now. Know what I mean? ANyway, when I was younger I used heat. Putting it on my face as soon as I felt the "twinge" would seem to help. In the past three months the CH's have gotten much worse than they used to be. So the heat doesn't help as much as it used to. Other than that, I haven't really had any other treatment. I didn't even know that there were preventive medications that you could take. Definately something I'm gonna have to discuss with my doctor. I'm almost out of the medication he gave me and there aren't any refills on it. (He was testing it out to see if it would work.) So I will definately bring it up to him about the medications that ya'll have mentioned. Thanks again for replying. Like I said earlier, it's really nice knowing there are people that truly understand!
Laura
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cootie
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Re: I'm a newbie... :)
« Reply #6 on: Jul 23rd, 2003, 11:37pm » |
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Did you say if you had every tried imitrex.....or did I miss that.....I'd definelty check on that and use of O2 and verapimil......imitrex 'seems'to be the med of choice for an abortive along with the others I mentioned. Hope you find the rite mix to work for you and be PF. Pam that hopes you find an answer and sumone finds a cure
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Charlie
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Re: I'm a newbie... :)
« Reply #7 on: Jul 23rd, 2003, 11:54pm » |
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Welcome aboard and I’m sorry you had to find us but glad you did.
We do know what this is like.....you are among friends. You’ll find some good ideas on coping with this horror. Here is a link to Simon’s letter that is terrific for describing what this is like to others. It’s worth it.
http://www.ouch-uk.org/ch/note_colleagues.cfm
Here is a technique that was very helpful to me and many others:
Dr. Wright’s Circulatory Technique
This technique was able to significantly shorten my cluster headache attacks, and kill my pain.
It involves concentrating on trying to redirect a little more circulation to the arms, hands, or legs. It can described as a kind of internal “flexing” or “push.” Increased circulation will result in a reddening and warming of the hand or hands. Try to think of it as “filling” your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up because it may not work on the first try. It will eventually and once in awhile, it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use this method. The doctor, while holding his arm at his side, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully the same day. I have had about a 75% success rate shortening these attacks. My 20-minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance dealing with this horror, I always used it, as I had nothing to lose but pain. I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly, kills the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes real concentration.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It gives us a fighting chance. It is not a miracle but it greatly helped me deal with this beast. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain.
Give it your best shot and I wish you the best of luck fighting this demon.
Charlie Strand
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Kirk
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Re: I'm a newbie... :)
« Reply #8 on: Jul 24th, 2003, 3:29am » |
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the cocktail that has worked for me so far.
Verapamil 120 Mg X 4 a day
O2 @ 11 LPM
Imitrex Stat Dose injections.
YMMV
Kirk
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OneEyeBlind
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Re: I'm a newbie... :)
« Reply #9 on: Jul 24th, 2003, 5:07am » |
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Welcome to the board !!! I swear by imitrex injections and O2 to abort the headaches. Did you take the "cluster quiz" (button to the left ?). Also, if they give you the imitrex injections don't miss the "imitrex tip" button to the left either. It'll make the imitrex last longer.
Again welcome to the board and heres wishing you some pain free time !!!!!!!!
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Tara Ann
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Re: I'm a newbie... :)
« Reply #10 on: Jul 24th, 2003, 9:19am » |
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Welcome to the board but very sorry you have the pain to be here. Ihave a little one turning 2 next month too!!! I just feel so bad when I am not as up to par as i want when it comes to my kids. Glad you fiancee is helping out with giving your little one the attention he/she needs! I stay home with my kids alone during the day but thankfully most of my bad aattacks are at night, just during cycle I am just so exhausted BUT we do the best we can right?!
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echo
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Re: I'm a newbie... :)
« Reply #11 on: Jul 24th, 2003, 9:52am » |
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Welcome to the MB. Sorry to read that you are being hit. Chasing a 2 year old is hard enough -- I'm still young enough to remember -- let alone chase them around with your eye being pushed out of your head.
Sorry you needed to search us out, glad you found us.
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Big Dan
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Re: I'm a newbie... :)
« Reply #12 on: Jul 24th, 2003, 10:32am » |
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Welcome....
... sit back and hold on... this boat gets rocked every so often.... but we save those that fall overboard... sometimes..... ;D
-Big Dan
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Pushkin
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Re: I'm a newbie... :)
« Reply #13 on: Jul 24th, 2003, 12:50pm » |
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Welcome,
Sorry to hear about your pain. 
Strongly suggest, as others have, that you get some O2.
O2 and ice packs at the same time keep me sane.
Good luck,
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Mark C
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Re: I'm a newbie... :)
« Reply #14 on: Jul 24th, 2003, 7:48pm » |
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on Jul 24th, 2003, 10:32am, Big_Dan wrote:Welcome....
... sit back and hold on... this boat gets rocked every so often.... but we save those that fall overboard... sometimes..... ;D
-Big Dan |
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.........except for the one's we PUSH in! LOL 
Welcome to the nuthouse lolli. Look here for info on the most common cluster meds. Good Luck.
PFDAN's
Mark
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cootie
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Re: I'm a newbie... :)
« Reply #15 on: Jul 24th, 2003, 9:14pm » |
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I think I've seen a few drown b-4 haven't we Mark  ..... they were reincarnated as meegrainers ! Pam that is jus crackin a funny....smiles ;D ;D
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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