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Title: Sad and Glad Post by Joseph_ndallas on Sep 16th, 2003, 10:12am I'm 53 years old but in good shape. From the time I was about 20 years old up until I was about 40 I had CH. I know suicide headaches and how close I actually was to that beast. For 20 years I fought them, classic, episodic like clockwork. I went to many many doctors. No-one could help. I took allegery shots, tired a whole host of differen diets, nothing seemed to work. My parents and friends never understood. They thought they knew what I was going though. Little did they know the beast that was inside me. One day a doctor suggested wisely for me to visit a neurologist that perhaps there was something else going on inside. I went without much hope for any results. When I described my symptoms, one sided, noses stopped, eyes watering, blinding brurning pain and seemed seasonal from year to year. He just said. Those are "clusters". He put me on Sansert and I have lived happily ever after with NO cycles in the past 10 years. Thank god. Now my son is 20, he's been complaining of headaches in the last few months. One sided , episodic, nose stopped, all the classic symptoms. I am incredibly sad today. WE know what he's going through and where other people may see us as weak, retarded, sick in the head, or it's just all in our minds, those of us here can relate directly to this unbelievable pain. Personally, I was near suicide many times at peak. It felt like I was literally burning alive from the inside out. I'm sure others here have been there as well. My son is going to the doctor today and get some relief. Tame this bastard so he can live. While I get so deeply emotional about this because I have been there I can't help but mix some tears of joy that NOW I know what I do for my son. There is some relief and some things he can do to help. I only wish I would have found someone who could have diagnised this for me earlier. I can't count the number of times I walk the floors in the middle of the night, went to the emergency room and seriously considered suicide to end my misery. We know here exactly what I mean. Before I had the constrictors I took plain old Dristan. I would take 4 at a time, 4 to six times a day during a cycle. I would chop them up or crush them in a spoon. I didn't care how bad it tasted. What the neurologist told me was Distan has a constrictor in it. Dristan saved my life more than once. My heart goes out to everyone here. I was one of you for many years and now my son follows sadly in my footsteps. But with treatment and knowledge I am tearfully happy he can survive. Some of those days I frankly wanted to give up. But thankfully that beast didn't win. Joseph Lacy |
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Title: Re: Sad and Glad Post by TxBasslady on Sep 16th, 2003, 10:33am :) Hi Joseph, You certainly found the right place to be. This site has been a lifesaver for me. My history of CH has been short. I have only had them for a year and 1/2. But you will find that alot of the folks here have suffered for many years, like you have. So very sorry that your son is now suffering. That is very sad, indeed. And you are right.....unfortunately noone really understands the pain and the distress and the toll that this "beast" takes on each and every one of us that suffer. The folks on this site are the greatest supporters anywhere. They are kind, gentle, understanding and very much equipped to help you and your son make it through this terrible ordeal. You can see for yourself, by checking out the links on the left. Not everything works the same for all, but the information is there. And all of them are so willing to share their experience with whatever has pulled them thru. It gives you a great insight, as to what to discuss with your Dr. Again, so very sorry that you have to be here....but at the same time, am very glad that you are. Hope you find the peace you need from this site, as I have. Best wishes to you and your son for many pfdan's Jean |
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Title: Re: Sad and Glad Post by Margi on Sep 16th, 2003, 10:38am Hi Joseph, and welcome. Heart-wrenching first post - so sorry to hear that your son is following in your footsteps. Can you get him on oxygen - it really is the most successful abortive here. Please keep posting - we have another ex-sufferer-turned-supporter here who watches her son go through this madness too. Her name is Donna and I'm sure she'll be posting when she gets off work today. Hang in there, friend. |
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Title: Re: Sad and Glad Post by ClusterChuck on Sep 16th, 2003, 10:58am Joseph, I am sorry you had to come to us. Glad you found us. Your son is so lucky to have an experienced supporter. I have a couple suggestions: First: Make sure your son gets fully tested before settling on the CH diagnosis. A CAT scan and MRI are very important to make sure there is not something else causing this. We are all guilty of thinking that we know what it is. Let the tests prove it is not something else! Other things can kill, ch's don't. The second suggestion is, if it turns out he is a clusterhead, make sure he comes and joins this board, and O.U.C.H. He can learn so much here and at the O.U.C.H. site, and the support he will get is unbelievable. Welcome aboard, Chuck |
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Title: Re: Sad and Glad Post by Joseph_ndallas on Sep 16th, 2003, 11:24am The only way I can really describe it was possessed by the devil. Hell itself was inside the right side of my head. Mine was a burning sensation on the top of my scull and seemed just under the hair line. Sometimes I would pull my hair to the point of almost pulling it out while rolling in agonizing pain. Sometimes I would apply pressure to the top of my skull, sometimes I would scream of course, mostly moan, pray to god, ask him why. It was true torture in my brain. They would last about an hour. I watched the clock and what time I took my meds. I knew it would start letting up in about 30 minutes and be much better in an hour. Some hours seemed like days. I would alternate with hot and cold showers. Sometimes the meds wouldn't work and I was there for hours. Sweating and then chilled. I would try everything, even sex didn't relieve it. It was a very dark time of my life. All this was before Sansert. I'm not sure why it stopped. It just did. I haven't taken anything or had a cycle in years and years. Did I out grow it? Don't know. I didn't change anything in my eating habits, smoking habits are anything, it just stopped. I have lived through a lot of things in my life and most I have forgotten. I was thinking today about the Sansert. I still remember what those little lifesavers sound like rattling in the plastic bottle in my pant pocket. That I may never forget. Yes, I was one of you and I REFUSE to let my son go untreated as I did. Joseph |
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Title: Re: Sad and Glad Post by Ree on Sep 16th, 2003, 12:47pm Joseph... welcome and sorry at the same time. Strange to rejoice at the thought of a new friend/ supporter for our group, saddened at the thought that your son at 20 should endure a curse that his father had already lived through. I am so glad yours are gone, that gives hope to our loved ones and hopefully like yours your son will not have this as an eternal condition. My husband is an eposodic cluster sufferer his cycles usually come 2-3 years apart though he injured himself once and got them after only a years remission. He is just ending his cycle. What does your son take for his attacks is he on a preventative and an abortive.. Margi mentioned the 02 please let us know if there is anything we can do... too bad we didnt have this web site for your years of anguish... We are here for your family now. Good luck Ree |
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Title: Re: Sad and Glad Post by Donna on Sep 18th, 2003, 8:27am Hello Joseph....... Our stories are in some ways very much alike. When I first started to have cluster headaches, docs had no clue (as some still do not) and I too went undiagnosed and untreated. My cycles lasted for 28 years and just one day...stopped cold...and never came back. My son started with what we thought at that time to be migraines. This was when he was 10 years old. He was treated with Periactin for years. When 17 yrs. old, his headaches changed....to cluster headaches. He went from doc to doc with no help..he went the ER route with no help. Then, in 1999 while he was in the middle of a cycle, I discovered this site while looking for something on clusters on the internet. He made an appointment with a neurologist, as suggested here, and the doc presecibed Prednisone for him to abort his cycle.......and it worked! Being the parent of a cluster sufferer has been one of the most painful things I've had to endure. The helplessness is overwhelming.....the frustration tears your heart out.......and the fear of knowing it will happen again and again leaves your blood cold. Finding this site is the best thing that can happen to both the sufferer and the supporter. The information is first hand from the sufferer, and confirmed over and over again. If one suggestion doesn't work, another probably will. The supporters have lived in this hell and know exactly what you are going through. No second hand guessing what it's like.....they've been there and still are, and a more compassionate group of people cannot be found elsewhere. I am deeply sorry for what both you and your child are going through and hope that you have found some degree of comfort in exchanging thoughts and feelings with all of us. Bring your son to our site and he will find friends to hash his feelings out with. He will find people who know what he is going through.....and he will find a bond with fellow sufferers that will amaze him. There's more than medicine to help a sufferer.....there's a kind of safety net here in that he can come anytime and will almost always find someone to talk to. No where else can one find the understanding, and the feeling of power in ones' self that we instill in one another here. We are our own cheerleaders. Read what you will find in the left margin, and also acquaint yourself with our organization....OUCH. Let us know what he finds out at the docs, and please keep in touch with us. Prayers and hugs, Donna |
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Title: Re: Sad and Glad Post by Miss_Deleny on Sep 20th, 2003, 10:40am I'm so sorry that your son is going through this. I can only imagine how horrorible it is to see your child suffer through these. The good thing is you, yourself, know what he is going through and can relate with him and his pain. I agree with all that has been said above ... read what is on the links to the left, make sure he gets properly diagnosed, and get him to come to this site. Knowing and having others to talk to will help him cope easier. This site is also for you, the supporter. We are here to help you cope with the frustration of helping him. We supporters feel your pain and are here for you as well. Welcome home! ~April~ |
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Title: Re: Sad and Glad Post by cathy on Sep 20th, 2003, 4:02pm Joseph, sooo sorry to read your post, you really have come to the right place not just for help for your son but for support for you too so welcome aboard.... :) Keep us posted on how your son gets on.... Cathy |
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Title: Re: Sad and Glad Post by Patrick_A on Sep 20th, 2003, 7:28pm Hello Joseph, I am on the opposite end of your story. I have had CH for 28 years and i am the son of a former CH sufferer. My Dad quit having CH's at the age of 43, they just went away and didnt come back. He is now 73. I remember as a boy watching my father go to the basement and struggle with his head. I remember my Mama putting cold packs on his forehead to help stop his pain. He too was episodic like myself. My Dad was one of the 1st to try the Histamine IV's. Anyway, I got my 1st CH when i was 16, but at that time me and my Dad had an awful relationship. I was young, rebellious and in general, i did not like him. So therefore we didnt talk about my CH's. I was 22 before i was able to mend our relationship to the point of being able to talk to him about them. My Dads opinion was they were stress related. My Mom was an RN, and she thought they were phsycosomatic (sp) She thought we were bringing them on ourselves. I could never understand that, It used to make me so mad at her. Why on earth would someone bring one of these onto themselves is beyond me? I remember my Mom saying that my Dad never had a CH in his 4 years in the Navy, He confirms this! Does stress play a part in CH? I rarely talk to my Dad about my CH's now. He has nothing new to add and he is old school, he believes i ought to just deal with it on my own, which is basically what i do. Just thought i'd give ya the opposite end of your story. Good luck, and i am glad you are there to help your son. PF, Patrick |
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Title: Update Post by Neko on Sep 20th, 2003, 7:39pm I took my son to the doctor. The doctor prescribe eleville as an abortive and also gave him some pain medicine. Thanks to the group here and the Vicks vapor inhaler he is doing much better. Interesting he called few minutes ago and said he had a MAJOR attack. The took his little red pill and it did nothing after 30 minutes. He went and took a huge snort of the Vicks and it was gone instantly! He said it wasn't even a minute later and it was GONE. Whatever is going on with that Vicks, it's working despite modern medicines best efforts. The doctors didn't have a clue about Vicks and not really about clusters per se. He was the authority, or so he claimed. If he ever had a cluster headache maybe he would loose some of that attitude. The beast humbles us all. |
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Title: BTW, Neko is my Son Post by Neko on Sep 20th, 2003, 7:44pm My son joined the board. I just noticed I posted using that handle. This is the Dad Joseph, Neko is the son Joey. Two handles on the same board. |
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Title: Re: Sad and Glad Post by Ree on Sep 20th, 2003, 9:53pm Cool another common link for the both of you... Make this condition work for your relationship... Learn together how to help your son and others like him. I hope that the meds start kicking in for him and that it will be a short cycle... good luck and thanks I had never heard about the vicks inhaler trick but I will tell my husband Dave about that... Ree |
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