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Topic: First time here... (Read 4324 times) |
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Melissa
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You will find no other humans on earth are like those who have had clusters. The uniqueness goes well beyond the pain. We are all extremely diverse, but there is no one else on earth who will understand you, and accept you like we do.
yes... welcome home. 
mel
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Gandalf the White
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Originally, "MadFlash," Now, just old and crazy...
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Re: First time here...
« Reply #26 on: May 6th, 2006, 9:47am » |
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on May 4th, 2006, 1:47pm, Melissa wrote:You will find no other humans on earth are like those who have had clusters. The uniqueness goes well beyond the pain. We are all extremely diverse, but there is no one else on earth who will understand you, and accept you like we do.
yes... welcome home.
mel
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Thank you Mel!
Richard, I will do as you instructed and get back to you all with the results.
My wife Melissa (SweetMelissa) posted recently on the support forum. She is as surprised as I am with the wonderful help and guidance demonstrated here. I have a question: I do not mind at all if Melissa reads my posts in this forum and she has no objection to my reading hers posts… But is it fair or appropriate to do so? I keep a journal and she keeps a diary, but I do not look in her diary unless she feels like sharing, and she is of the same mind regarding my journal. As an example, I do not expect her to tell me every detail she shares with her closest friends… Perhaps I am just concerned that if she knew that I was reading her posts she would not speak as freely as I expect she has? Or perhaps I am more concerned that if she knew just how morbid my thoughts turn that she would be scared to death! Melissa completes me. She is my anchor, she is my heart, she is my solace; I feel whole and grounded. Melissa is my best friend.
It has been a couple of days since my last post. Since early morning, May 2, I have been fighting the beast. No sleep, very little food, seclusion. But the devil got me good on the night of May 4. I fell to sleep for a moment while reading and I woke in absolute horror... I am still here, and I am still sane. I kept repeating this to myself for hours, I am still here, and I am still sane… until finally the devil let go of my head.
I saw my Psychologist yesterday. Our last visit was in February. He was recently promoted in January and moved to another district. At the conclusion of our appointment he said, "I feel we should negotiate the end of our relationship…" After 6 years that was all he had to say! He also added, "We both knew this day would come… we are both moving in new directions." This was new news to me. Bad news. I was hit completely by surprise. I was speechless. I can deal with this. But when I spoke to Melissa later I realized that this encounter sparked past memories with similar feelings of rejection, which I would like to share here.
32 years suffering and my only support now are Melissa and my new Neurologist. I developed symptoms during my sixteenth year. I had to leave school when I was 17 due to the daily pain and terror of CCH. My family treated me like a leper, a pariah. I was treated like a lunatic! I lost most of my friends! All of my life prior to the onslaught of CCH was good. I enjoyed the company of relatives—I had a large family. I was popular. I was active. I had the respect and admiration of both family and friends. And then I had nothing. I was terrified. I was helpless. I was alone… My Father finally took me to a Doctor 2 months after the fact! (In retrospect I realize that I was rather naive in youth, but then I was a complete mess. I was afraid to venture away from home.) My Father spoke with the Doctor first. When it was my turn to sit in the office and the Doctor returned, the first words out of his mouth: I am making you an appointment to see a Psychiatrist next month, and then he gave me a prescription for Valium! My Father did not say one word to me all of the way home. I was 19 before another Doctor referred me to a prominent Neurologist! But by then I was beat down hard and out and convinced that I was mentally ill. It was all in my head. I heard this repeated so many times that I had finally come to believe it. And as a result I have gone to extreme lengths to hide my illness from others from that moment on… and this is the reason why I still find it difficult to share my pain with anyone today. This is a hard mind-set to break!
This is my experience. Today I hardly associate with family. I have only a couple of friends.
I had to get this off my back… I am a tad depressed.
I noticed today that I have collected some private messages. I promise to answer soon.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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MJ
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Re: First time here...
« Reply #27 on: May 6th, 2006, 12:43pm » |
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A man can go through life and develop hundreds of aquiantances some we think of as friends. Each often have there own agendas in mind. When there agendas are no longer met they move on.
A man is very lucky in his life if he can say that truly he has 2 friends. That is those without an agenda. those who will be there for you when you need them most. They may not know you completely but you know you can count on them.
I read a post by sweet mellissa. You are one of the luckiest of men.
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MJ
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alchemy
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get out of my head
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Re: First time here...
« Reply #28 on: May 6th, 2006, 5:47pm » |
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Welcome aboard Mad flash. Yuo are indeed in the right place. The family here is the best, they've sure helped me through rough times. Just remember we're always here. Don't let the beast win!!
jim
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marlinsfan
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Re: First time here...
« Reply #29 on: May 6th, 2006, 10:38pm » |
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on May 6th, 2006, 9:47am, MadFlash wrote:
I have a question: I do not mind at all if Melissa reads my posts in this forum and she has no objection to my reading hers posts… But is it fair or appropriate to do so? |
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It's absolutely appropriate! CH hits you both, it's something we share with our supporters!
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Gandalf the White
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Re: First time here...
« Reply #30 on: May 7th, 2006, 7:52am » |
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on May 6th, 2006, 10:38pm, marlinsfan wrote:
It's absolutely appropriate! CH hits you both, it's something we share with our supporters! |
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We do share. Everything...
Even with CH I have had an active live. (Well, as best as may be expected under the beast.) I have enjoyed the company of several fine women to date, but I have only been seriously engaged a few times. Each serious relationship went straight to hell because of CH. Melissa is the first to hang in and on... 5 years as best friends, 3 wonderful years as lovers. I adore her. She is my life. She is so precious to me. I am a fortunate man.
I was asked to post the medications and therapies I have tried or used down through the years. (There are so damn many...) When I have the list completed I shall post it here. Thanks, as always.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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Charlie
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Re: First time here...
« Reply #31 on: May 7th, 2006, 1:46pm » |
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Welcome Flash.
Quote:| I have a question: I do not mind at all if Melissa reads my posts in this forum and she has no objection to my reading hers posts… But is it fair or appropriate to do so? |
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You better believe it!. The more information and interaction with clusterheads and those around them, the better. Although I've been free of this horror for 15 years and knew something about it, I learned much more about CH reading just a few posts. If only this place existed when they first hit. Like others, I was trying to prepare for cancer, stroke, and other deadly horrors. I had no idea.
It's hard to describe meeting others and witnessing an attack or two. Those getting hit don't have to deal with post-hit shit from everyone around them. Everybody knows exactly what's going on and they know enough to ask only what the hittee would like us to do the next time..... and he or she doesn't have to explain a thing. No blank stares, or mindless questions or moronic suggestions. What a deal!
Here is something that helped me most of the time:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the 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 in frustration. It may not work on the first try. Every now and then 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 of method. The doctor, while placing his arm on his desk, 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. 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 to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
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 is not a miracle but it helped me deal with this horror. 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. It gives us a fighting chance.
Charlie
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RDubois
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Re: First time here...
« Reply #32 on: May 7th, 2006, 2:41pm » |
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Hope you'll hang in there because there is "hope". They say that CHs diminish with age. That has been true in my case. I didn't start CHs until I was 55 & I'm 76 now. The last cluster I had was this past winter, from early November to January, but the intensity did not seem to be as bad.
Has this been your experience? Or are your CHs as bad as ever. God, I guess they're all BAD!!!!!!!!!!!!
I agree about thinking your going to go crazy or something, In my case, because of my age, and when I'm having a bad headache, I wonder why it doesn't cause a stroke. So far it has not.
Good luck,
RED
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cekelle
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Re: First time here...
« Reply #33 on: May 11th, 2006, 1:34am » |
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Welcome Home MadFlash! 
I had a whole paragraph ready to post and got logged out. Now I'm pi$$ed. Don't take it personal. I'm not the fastest typer in the world. To sum it up just hang in there and I think it's great that your wife is involved with you. Support is very important.
Chris
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fireball
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Re: First time here...
« Reply #34 on: May 11th, 2006, 2:27pm » |
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Why do so many people find it so damn hard to believe that another can experience such extraordinary pain with such frequency and still remain half sane or alive?
My husband was diagnosed 8 years ago. He has often asked the same question. He has said that if he was standing in the middle of the room with an open wound, a limb missing, etc., people would pay attention. But unless you are a sufferer or a supporter, you can't "see" it, so it's nearly impossible to get people to understand.
I am so thankful that you and Melissa have found this site. Everyone here DOES understand. And it is so comforting to know that there are people that no exactly what life is like.
Welcome home!!!
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Margi
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Re: First time here...
« Reply #35 on: May 11th, 2006, 3:23pm » |
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Hi MadFlash,
Sorry you have a reason to go looking for others who've felt your pain but I'm so glad you did! It's honestly crucial to your survival.
My husband is a sufferer as well, same age as you, started around the same time. He grew up in Kingston, ON and then spent some time in the Maritimes as well - Saint John, NB - completely undiagnosed until we found this board in 1998. He could have written your story word for word. So could pretty much any sufferer here. For something so rare, it is amazing the commonalities when you find another true clusterhead. From the pain to the persona, it's like you're all from the same batch of cookies, my friend. Know what? My hubby found huge comfort in that. Wait till you meet another clusterhead in person - you'll feel as is you've met someone from your home planet and so will Melissa, meeting another true cluster supporter. We walk to a different tune, us cluster folk, and only WE understand what it means to live with cluster.
Just so you know, we do also have a Canadian site at http://www.clusterheadaches.ca and we've got a couple folks in your area. I know John and Darleen are in Sydney (I know, not next door, but this IS a pretty rare affliction). Here's the link to our message board: http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl - kinda slow right now but I think most of us are outside enjoying this wonderful Canadian spring!!
As well, we've found that doctors in the Maritimes are quite uneducated about clusters. Sorry, but it's the truth. Our daughter and grandson are in Quispamsis and have recently had to deal with pediatric neurologists. Trust me, there ARE better neuros in the rest of Canada! Mike's "cluster career" came on full force when he was out there and he was given everything from tranquilizers to narcs to antibiotics to treat his "sinus infection". 
Please do tell us what you're using, med-wise, to battle the pain. Oxygen is an amazing abortive and there are a few non-med things you can try:
ice packs (frozen peas works in a pinch) on the back of your neck at onset
ice cold water (read the water x 3 button to the left)
gravol (Travel Tabs at Shoppers Drug Mart) to get you through the night
staying calm (sounds easy, right? Mike says it's the hardest lesson he's ever learned but it's been HUGE in his ability to deal with an attack).
Hope to see you over at OUCH Canada soon - you AND Melissa.
Again, welcome.
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Gandalf the White
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Re: First time here...
« Reply #36 on: Jun 17th, 2006, 2:21pm » |
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on May 11th, 2006, 3:23pm, Margi wrote:Hi MadFlash,
Sorry you have a reason to go looking for others who've felt your pain but I'm so glad you did! It's honestly crucial to your survival. |
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Thanks Margi,
From both Melissa and me.
http://www.uspharmacist.com/index.asp?show=article&page=8_1745.htm
I will write more later on.
(I'm feeling better now...) 
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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pleasantlyblue
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Re: First time here...
« Reply #37 on: Jun 17th, 2006, 5:52pm » |
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HI Madflash.
I'm new here too and as I read your thread I could itendify with everything. I've been a clusterhead for over 25 years myslef. I noticed you hadn't posted for a while and was wondering how you were doing. Don't let go of this forum or these people. They've been a godsend to me and so many others. Just the understanding is invaluable.
PF wishes to you. You are in my thoughts and prayers.
Marie
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Jonny
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Re: First time here...
« Reply #38 on: Jun 17th, 2006, 6:16pm » |
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Hmmmmmm!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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b0x
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Re: First time here...
« Reply #39 on: Jun 19th, 2006, 9:59am » |
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Hello All,
I want to start off first by saying... Thank God yous created this place.
I have been getting cluster headaches since I was about 12 years old. At first we thought it was because my parents were getting devorce and since I was a kid they were just really bad stress headaches. I had stop getting them for a while when I was between 15 and 16.
I used to think that no one could have as bad as a headache as me but i find thats not true. My headaches come and go somethimes I get them everyday for a couple weeks, sometimes I have no headaches for a month or two.
Since this place is a support community I should tell you are that I am a smoker. I know I should quit but it is hard. I find that smoking doesn't really trigger a headache, but being in a smoke filled room does.
The reason I came here today is that I had a headache last night one of the worst ones I have ever had. I was actually doing the dance bitting the couch and pushing my thumb in to my left eye as hard as I could. What is wierd is that even though getting sick is more of a migrain symptom that helps. Usally my headache ritual is to take asprin, get in a dark room put my left part of my head in the hinge of my elbow and then do like a headlock move on the top of my head as hard as I can. If I am lucky which most times I am not I can get rid of it.
I sometimes have headaches that aren't as intense for those I can subdue them by laying in a bath of hot water with my head back and submerged.
Because I am impatient I didn't really read thorugh the board yet but i wanted to let you guys know some of the things that help focus your pain away from your head. I like to put HOT! wash cloths on my head almost to the point that it burns. I also sometimes scrape my gums with my finger nail because that way I focus on that pain (I don't recomend that to anyone).
Another reason I am here is family. I have been to the doctors many times and have had many test. They found that I have a pittuatary tumor that is inactive, but now everytime I have a headache on my mom finds out she starts to panic and tells me that I need to go to the neurologist. I try to explain to her that it has nothing to do with that but she hounds me. I used to have to hide my headaches when I lived there because I would get so stressed that another one would happen.
Now that I live with my girlfriend its even harder, she is a very STORNG girl, so she doesn't understand this. She thinks that because there are cures for many illness this shouldn't be hard for doctors. She doesn't understand what its like to go to the doctors over and over to find out that there really isn't anything they can do, and sadly they don't really care, most have heard stories but few have ever felt the pain. I don't blame them for not caring no one can ever know how intense they are with out having them.
So after saying all that I am making an appointment with my Genral Doc to get a referell to see the neurologist whos is going to tell me that there is nothing he can do and that the pitutary tumor is now the endocronologist problem.
I have plenty more to say but I will let all you readers get back to doing what you were before starting to read this novel.
One more thing... Nothing bothers me more when someone says that they have a migrain when they don't
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Gandalf the White
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Re: First time here...
« Reply #40 on: Dec 22nd, 2007, 8:41am » |
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Hello all, I am back... It has been such a long time. It took all night to find my original post and profile information here so I could log on again. I should mention that I am still with Melissa - she does not know that I am back on this board...
I NEED HELP! Early this year RE-diagnosed as combination Cluster headache and Trigeminal neuralgia, which is a rare condition known as "cluster-tic syndrome." (If you read back on my earlier posts, you will know that CLUSTER is the monster.) My pain repeats several times and more each day, lasting an hour or two, every day - for 33 years non-stop. (This past year has been especially difficult to manage, with additional symptoms, indicating more, or just nerves... I do not know...) Scheduled for more comprehensive testing at a local hospital by a referral to another Neurologist. However, my personal physician LOST MY ENTIRE CASE FILE! I have been to four doctors since leaving my original physician. Without my medical history, not one doctor is taking my word... I am in hell! I am thinking hard on suicide. I do not believe I can take much more of this... and now I have no support. It is now 9:39 am in Dartmouth, the pain is returning. I will check back later.
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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RichardN
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Re: First time here...
« Reply #41 on: Dec 22nd, 2007, 11:29am » |
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Hi MadFlash
Sorry to hear you're having such a bad time.
Did you ever get to try 02?
I re-read this thread from the beginning. Hope some of the info last year gave you some hope/direction . . . and at least some PF time.
Please let us know what you may have tried since then, and what did (or didn't) seem to work for you.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Groov
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Re: First time here...
« Reply #42 on: Dec 22nd, 2007, 9:41pm » |
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Hey MadFlash:
Most here know more than I about the subject of Clusters, but I can tell you something in my own words.
I read your posts and saw you feeling better as you went.
When I first came here, I had really no idea what I had...or at least if there was help.
I was seriously considering blasting my head off with my 12 gauge. Fortunately I met the fine people here and they got me on the right track !!!
You ain't gonna believe how much people here care about your problem and to what extent they will go to help you.
I owe them a lot !!!
I'm doing just fine right now, but if things get awful again...I know where to come.
I've met people here who have become by very best friends.
Welcome aboard & visit often...you wont find a better group of people !!!
Cheers, Dave
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BarbaraD
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Re: First time here...
« Reply #43 on: Dec 23rd, 2007, 7:31am » |
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Mad-Flash,
Welcome back... I've been reading this whole thread and yes, you've had a bad time -- so have a lot of us. When I found this site (back in 9 I was in about the shape you're in now. I thought I was ALONE and saw no reason to keep on with the pain.... but I met some wonderful people who KNEW what I was going thru and NO it wasn't an overnight thing, BUT, thanks to a post from a guy in CO, I found a drug that was my miracle one and has been since Aug of 99.
I'm chronic and still have "high" cycles where I want to chop my head off, but for the most part I NOW live a fairly NORMAL life. But it was DUE to a CHANCE post on this board.
And let me tell you something else friend - If there's a drug on the market I haven't taken, it ain't been made yet - and not a damn one of them worked - surgery didn't work, narcs didn't work - For two long years I didn't even go out of the house - my business went to hell (an employee embezzeled more than you even want to know about). Well, thanks to that post, I found a MIRACLE, got my business back, got rid of that employee and got my life back. My family thought I'd flipped out totally. And they still don't understand anything about these headaches (they don't want to).
And during all this my husband had a stroke and was sick for several years before he died. I took care of him during this time with the headaches. And he sure didn't understand them. Try going to ER with a stroke patient in a semi-coma and getting hit with a 9 and trying to tell the damn ER doc that you've got to have O2 NOW! (Well, they finally got used to me, but the first few times were a challenge).
What I'm getting at is -- You're NOT alone in this - when we say - WE UNDERSTAND - by gosh we DO.
Now there's something out there that's gonna help you - it's just a matter of finding it. For most of us it's been trial and error (and some are still looking), but keep an open mind and be willing to TRY new things. Be assertative in your treatment with your neuro and GP.
And stay tuned in here -- we're here to HELP.
Now, what are you taking? What have you tried? When is your next doc appt? Give us something to work with so we can start to help you.
Hugs BD
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Gandalf the White
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Re: First time here...
« Reply #44 on: Dec 23rd, 2007, 7:01pm » |
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Hey BD,
I have tried every medication and combination you can name in 33 years, including herbs, potions and street drugs, including MMs. Nothing worked, or I just felt worse. (02, ice, heat, physio, meditation, hypnosis, bio...) I have tried direct injections to the base of my skull in Emerg - a combination of steroid, narcotic, freezing - which works (not wise or preferred). I haven't tried surgery - if surgery is actually a choice in my situation... I don't know. I need a reliable doctor. I am on my third business loss. This time my partners robbed me blind and I ended up on government support. Melissa is the only woman, best friend and lover, who has bothered to learn and to understand. We have been together for nearly 10 years. I still have a hard time letting her see me in the gasp of a major attack - I have hidden my struggle for so long that it's just a natural turn of my personality. (and I don't like freaking people out, especially as they have no idea what is happening...) I would rather keep my "crazy" to myself. But I often do get caught in a situation where there is no retreat.
I just wanted to thank you all for responding and rallying to my support. I'm on my second wind now, and I think I'll be alright for now. Merry Christmas!
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"... All we have to decide is what to do with the time that is given to us."
~Gandalf the White~
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BarbaraD
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Re: First time here...
« Reply #45 on: Dec 25th, 2007, 7:00am » |
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Oh Mad-Flash -- I'll make you feel better this Christmas morning --- Right now I'm in a high cycle -- At Christmas time what else?  So last night I had a house full (not to mention my 6 year old Caleb - grandson). Got thru that with about a 6 -- got the dishes from dinner in sink cause dishwasher was running from the afternoon. Took my meds after presents were done and unloaded dishwasher -- Told idiot kids to put dishes in sink in dishwasher cause I had to go nighty nite.
Took Caleb to bed to wait for Santa (rule - ya gotta be asleep when he comes). Got woke up about 4 am with a 9 (unusual but it happens). Grabbed cafergot, Red Bull, O2 - everything in site, then went for the coffee... got to kitchen and lo and behold!!!! dishes still in sink and not loaded in dishwasher!!!! Now one thing (and I'm not a neat freak by any means) I CANNOT handle is dirty dishes in the sink in the morning!!!!! And with a headache - this is NOT good!
By the time I get my coffee, Caleb is awake and yelling for Santa -- I tell him to go wake up Mommy and Daddy -- they hate getting up early -- it's now about 5a.m. My head is down to about a 5 (I'm still in the DO NOT TOUCH stage!) I mention to the "kids" that the dishes are NOT in the dishwasher and they inform me that they were TIRED last night! Not a good start to the morning!
We get thru Santa (he brought Granny some power tools - had a strong urge to do a lobotomy on two very deserving parents of my grandchild, but ....). Granny goes to bathroom and chain smokes while coming down off the hit (the children don't like Granny to smoke in HER house when they're around -  and she's NOT going to sit OUTSIDE in 20 degree weather just to keep them happy, but is "trying" to be nice during the holidays.
So here it is almost 6 a.m. My head is down to about a 3 - Caleb is happily playing with his toys, the kids are "resting", Granny has done the dishes and is sitting at the computer trying to keep her mouth shut and getting ready to start cooking (now that the kitchen is clean) for a "lovely" Christmas Day with the in-laws.
And YOU think YOU have troubles!!!
Just thought I'd cheer you up --- And you have a Merry Christmas....
Hugs BD
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What don't kill ya, Makes ya stonger!
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