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Topic: Tell us something about your SUFFERER (Read 7673 times) |
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Chia
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Re: Tell us something about your SUFFERER
« Reply #25 on: Sep 28th, 2003, 1:35pm » |
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Wow...what a trip I just went on reading everyones posts....  ...Amazing! I will try to give you all some insight as to what I have been going thru. Charlie & I met back in 1993 (I am his 3rd wife "yes I said third!!" and he is my 2nd husband) we got married in july of 1995. Charlie used to get the severe headaches with his 2nd wife but thought they were sinus problems, he even went as far as proping up his bed to try & relieve some of his pain, but back then they were not as severe as when he started with the "Dance" around 4 years ago..To be honest with you I too thought that it was a real joke when he would go thru an episode. It would happen usually around July and they would last for about 2 weeks. (That was then!) We went to the Doctor and just like everyone else he was put on sinus Meds, or allergy medication, We thought he was allergic to mold so we cleaned EVERYTHING in the house!. Last year he was given Zertec & Tylenol #4 and well we thought it was helping but he kept complaining that his nose was burning and the HA would not subside. I remember sitting in a resturant on my Wedding anniversary and the food was just placed on the table and Charlie jumped up and ran to the car while I was left to package the meal and pay the check. When I got outside to the car there he sat "Holding his head, crying with the air conditioner blowing in his face rocking back & forth" I looked at him in fear, I thought he was going to die! I nic-named him "IGORE" because everytime he would go into an attack this is what he looked like...We would go to the Doctor and I would say its "IGORE" time and the Doctor would know exactly what I meant. This year the HA started in Aug, he went for the 1st 2 weeks with the allergy meds & Tylenol #4 and they kept getting worse & worse ...He kept taking showers, sometimes as much as 5 a night,He couldn't smell anything (I couldn't use ANY body sprays at all!) He would get sick,He would take the beast for a walk and I would panic because I didn't know what was happening or where he was, The room had to be DARK, No Music... No T.V.Then came the Ice Packs...We tried the Heating Pad Then finally we went to the Doctor and he mentioned CH. I came home typed in CH and came to this web site....OMG!!! , ???,  ,He took the test and IT"S HIM!!! for the past 3 days Charlie & I have been plugged into the Computer trying to gather as much information as we can...He is so scared now because his headaches now have a "NAME" and what does the future hold? Does it get even worse? We are going to the Doctor tomorrow to try & get the 02 (It seems to be helping everyone else so maybe it'll help him too) Wish me luck (and a good nights sleep wouldn't hurt either!).... Chia
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #26 on: Sep 28th, 2003, 1:55pm » |
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Thanks for sharing your story with us and welcome to the group. If you all need help or have questions just give us a yell.....there is usually someone on the boards 24/7.
You're doing the right thing. Education yourselves....that is your best bet when dealing with the doctors, insurance companies, employers, etc.
Sorry you have then need to be here but since you do it's the best place to be.....
Hugs,
Jacks 
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Ree
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Re: Tell us something about your SUFFERER
« Reply #27 on: Sep 29th, 2003, 7:40pm » |
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Welcome Chia this is great we are hearing from some new people... We are a great group of supporters and would love to hear more from you... Keep your chin up and know that you arent alone...love to you Ree
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ClstrHeadSupport
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Re: Tell us something about your SUFFERER
« Reply #28 on: Oct 23rd, 2003, 4:18pm » |
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My name is Sara, my fiancee's name is Stephen. He is a sufferer of Episodic Cluster Headaches. We have been together for almost two years ( I know that's not long compared to most of you but I plan to be with him the rest of my life) he is the most beautiful, kind, sensative, funny, loving person I have ever met. As far as I'm concerned he's the last person on earth that deserves this pain. (I am so much more deserving then he is.) He has had these headaches since he was about ten years old, he's been to a thousand doctors and tried just as many different medications. He's been treated like a drugie (even made to show the inside of his arms once to prove he had no needle marks) He's had every test any doctor could think of, and even though he's been diagnosed with CH and was perscribed Stadol by one of the top specialists in the state he still has a hard time refiling his medication. Just recently his doctor told him there was nothing he could do for him and refered him to a pain management clinic. Standford. I guess it's supposed to be one of the best there is, we'll see.
This man is everything to me and I will stand by him for as long as he'll let me, and even those days when he won't. It hurts so bad inside to see him in pain. Being a mother it's only natural to be Dr. Mom, to kiss "boo-boo's" and make everything all right. It's so hard to sit there knowing there's nothing I can do, and even when I can there's always the chance it's going to make his pain ten times worse. However unlike what I have heard most of you say my fiancee likes me to be close to him when he gets an attack. Sometimes he'll push his head into my lap, anything to be touching someone he knows is there that understands I guess. His ex used to yell at him, telling him that he got them on purpose and that it was only when she had made plans for them. Maybe that's why he doesn't push me away. There are some days when he'll get an attack, and when he gets them sometimes the only thing that helps, even though it's only a little, is cold air from our wall air conditioner. Some days I'll sit there with him, icicles forming from my nose, after his head ache wears off he gets really cold. I'll bring over a comforter and he'll hold me so tightly, so much like a child grasping for comfort. I'll hold him until he passes out from the exahaustion an attack brings.
Well, that's a short version of my story. I hope that tells everyone a little more about me and my fiancee then some of you may already have known.
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Sara Pope
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #29 on: Oct 23rd, 2003, 4:36pm » |
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Oh Sara....your story has touched my heart. You, dear lady, sound like a wonderful supporter. I've never met you but I must tell you how very proud I am of you.
My Blake likes for me to be right with him during an attack too. I think he feels safer that way.
If you were here I'd give you a big hug.... 
Bless your heart....
Jacks
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Margi
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Re: Tell us something about your SUFFERER
« Reply #30 on: Oct 23rd, 2003, 4:37pm » |
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Awesome post, Sara - I especially like the part about the icicles hanging from your nose. Those chills they get once the attack has passed ... you really nailed it. Gotta have that blankie handy.
You should teach a class in Supporting 101. Sounds like you're doing everything VERY well. You really touched me with this one.
Again, welcome to the family.
p.s. to Jackie - you and I were posting the same thoughts at the same time. That's just freakin SCARY 
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| « Last Edit: Oct 23rd, 2003, 4:39pm by Margi » |
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #31 on: Oct 23rd, 2003, 4:49pm » |
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Margi...let's just say the 'great minds run together'.... 
Oh...and we're right on with this one too.... Sara is a dandy....
Jacks
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ClstrHeadSupport
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Re: Tell us something about your SUFFERER
« Reply #32 on: Oct 24th, 2003, 3:13pm » |
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Aww...thanks guys. Gosh, it feels so good to talk about it. Like a huge bolder is being lifted off my chest. Sometimes just talking about it or writing about helps so much. I guess that's why this site was made. I try to keep a jornal, that helps, but it's nice to talk and actually get advice and a response from someone that just doesn't have sympathy but actually understands what I'm saying.
Thanks for making me feel so welcome.
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Sara Pope
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lapowers
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Re: Tell us something about your SUFFERER
« Reply #33 on: Nov 1st, 2003, 8:48pm » |
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My name is Laurie and my husband is Terry. He is 46 and we have been married 23yrs. We have a daugther, Taryn she is 14. We live in Redwood City, CA. Terry has chronic CH. He woke up 13 yrs ago with a headache followed by a sinus infection. He took several antibiotics for 3 wks. The ENT doc said she need to do surgery to prevent a brain abcess. She assured him that he would wake up and feel better in a day or so. Boy don't we wish that happened. He woke up and told me that he was going to jump out the 2nd story window because that would feel better than the pain. They hooked him up to a morphine pump. No relief. The called in the pain specialist who I thought would tell me he had a brain tumor. He told us that he had somekind of headache disorder. Next stop the nerologist. After talking to my husband and following the pattern of the headaches he told him it was CH. The first six mo he was eposodic. They treated him with various drug combo's, oxygen etc. No relief. He became chronic, every day all day. The next 6yrs were filled with alot of trial and error.Next stop, Pain Clinic. The doc was great, willing to try anything and everything. Tried every drug available them some, nerve blocks, IV lidocaine etc.... no relief. He sent him to Scripps clinic in San Diego to the top doc who was preforming surgery to inject the nerve that causes the pain and kill it. After hearing that it could possibly make you worse , my husband wasn't willing to take the chance. Good Choice. Next stop neorsurgeon who recm'd a nerve decompression and said he would only preform it if he was able to get a doc from Stanford that had preformed 100"s of them. After 6 hrs of surgery and not waking up for two days, he had some temp relief. The Ch's returned so the doc went back in to see if the teflon pillow they had placed had moved. They found that part of his nerve was wrapped around an artery. When they came out the assured me that this was it and his pain would end.
I am going to send the next chapter of this journey in another post. So much has been done it will take a few posts to cover it all. I apologize for being long winded, but the sad part is this is what we have been faced with the past 13 yrs.
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lapowers
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Re: Tell us something about your SUFFERER
« Reply #34 on: Nov 1st, 2003, 10:06pm » |
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I'm back withthe next leg of our journey. They sent us to Canada to Imitrex before it was FDA approved here. The doctor there said it was worth a try but didn't think it would be the answer. Terry hated the thought of giving him self injections but its amazing what lenghts you will go to to get relief.Two weeks worth of meds for $1500 and no relief.
The pain doc decided to try a last ditch effort and place a stimulator that is used for neck, back and arm pain.
Terry had 6mo of 100% pain relief. They left it in for a few more monthes to see if they could get more relief, but no luck. The doc recm'd since he had 6mo relief with something that he didn't think would work it was worht giving thought to going to Germany where they were doing stimulators for head pain. After months of trying to get in touch with the doc there and finding the right time to call with the 9hr time diff we got the info we needed. Now our only problem was paying for it. It's not FDA approved so no ins. coverage. We had an angel working for us and we didn't know it. A good friend went to our pastor and he asked a few people for help. He presented us with a fifty thousand dollar check and said there are people who are willing to help you get your life back.
Mar 97 we made the trip. The scariest thing I have ever done in my life. We don't speak the language, don't know the doc, dont'even know where we are going.
To be cont....
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lapowers
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Re: Tell us something about your SUFFERER
« Reply #35 on: Nov 1st, 2003, 10:38pm » |
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cont.....
We had to stay in Munich for five wks. It was so hard to leave our daughter. We meet the doctor after along day of wandering around the hospital. you had to go from place to place to get blood work EKG etc.... The hospital was a huge teaching hospital. It was 3 times bigger than Stanford. He said OK we will do it in the morning, no explanation on anything. I told him we are from Calif and before we let anyone cut into our heads we get 2,3,4,5,6,7,8 opinions and need some explanation. He looked at me like I was crazy and told me not to worry. Boy I think I heard that somewhere before! The placed it temporarily to see how it would work. At first Terry didn't feel the stimulation in the right area and was sure it was a failure. Doc came in next day and said we will take you back in and adjust it. They got it right where it was needed and for the next few weeks I saw my the guy I married return. He began eating, laughing opening up the shades to let light in our hotel room. By the time 5 wks was up he was 100% pain free and one happy guy. When we returned home my daughter said to me mommy, daddy is weird he is dancing around the house playing loud music with all the shades up!!! I said no honey thats the daddy you have never had the pleasure of knowing. He remained pain free for 1-1/2 yrs. We had to find a way for him to go again because he knew it would help him. It took us awhile to get it all together. He went back to Germany in Aug 01 to have it adjusted again. They found scar tissue around the electrode, fixed that and placed another one (he has 2 now) to reach all the pain areas. He remained pain free for a few months.
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Margi
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Re: Tell us something about your SUFFERER
« Reply #36 on: Nov 3rd, 2003, 10:36am » |
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Wow I have NEVER heard of so much surgery for clusters!!
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lapowers
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Re: Tell us something about your SUFFERER
« Reply #37 on: Nov 3rd, 2003, 11:08pm » |
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Unfortunately everything was a trial to relieve the constant pain. At the time he was unable to work, eat or just function on a daily basis. He lost about 40 pds at one point. Fortunately his docs never stop looking for an answer. It is what finally got us to Germany. I can tell you the neurostimulator implant changed his life. Now we are just looking for someone here in the states to be able to do the adjustments needed. Thanks to this great site, I had people respond and give me names of docs they know preforming the procedure here. Terry's doctor called one of them at the Mayo Clinic in Arizona so now I will call and get all the info to see if they will look at him. I am so happy I stumbled here and found all of you. Laurie
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Annette_Emond
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Re: Tell us something about your SUFFERER
« Reply #38 on: Nov 4th, 2003, 10:16pm » |
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I first met Dave on-line, while doing research for another non-profit I was trying to help set up. I was living in Surrey, BC at the time. I had just moved there, started my old job in a new office, bought a house, and was considering getting a puppy. Then one night in July of 1998, over the cyber waves came a message from a guy who was researching the same areas for the same reasons- to help fight for children’s rights against abuse world wide. To make a long story short, our daily chats began to be interjected with more personal information and questions. Along about October of that year we decided that we were both interested in meeting in person. Well that was that! Once we actually did meet, we both fell in love at approximately the speed of light. By December, I was listing my house for sale and gathering all the necessary documentation for immigration to the USA. I came down on a visit for a few days in February, and that was the first time I saw Dave in cycle. He really hadn’t said much about the headaches before that time, and I probably wouldn’t have given it a second thought anyway- after all- I knew what headaches were.. as long as I had taken birth control I suffered from excruciating Migraines.. so… I understood. YEAH RIGHT- It took until April to sell the house, and then a few more weeks to get everything together to come to the US for 6 months on a visitor’s visa before I had to return to complete the immigration process. From Feb. until April I was going nuts!! He was being treated by a Neuro at the time who gave out whatever pill was flying on all the flags left by the drug reps that week. Didn’t seem to pay any attention to prescribing info saying certain ones should never be taken in combination- Days would go by with no word from Dave, I would finally call and he would have NO IDEA- “I just talked to you yesterday” or “didn’t you call me earlier today?” He was off work 3 months and thought it was maybe a couple of weeks. Anyway we got through that, and I sold the house and came down for 6 months on a visitor’s visa before we had to finalize the immigration. By the time I had to leave for Canada again in January, he was just going into the “shadows” preceding his cycle. I couldn’t stand to leave him, but I had to go back if I wanted to come back permanently. Fortunately the immigration thing went smoothly and quickly, and I was back at the end of February, with him in full blown cycle. We had to be married within 90 days of my entering the country, and even a tiny wedding takes work and planning. We made it through that too, and on our wedding day I watched him from the corners of my eyes all day as he shadowed and was hit- fortunately not real high, but enough to cause me pain and to cast that little cloud on our happy day. That was April 2000. Up until that time he was episodic from January thru April. Then in 2001- after having gotten through the dreaded November and December as they began to rob him of his sleep patterns- his cycle hit right on schedule --- and it has never stopped. Dave lives every day with 8 or 10 attacks. From January to April, and also now in September to mid October, his cycle escalates in frequency and severity of attacks. Some days I would think “ This is NOT what I signed up for! I want my life back! Where is that man I fell in love with? “ For crying out loud, much of the time he can’t even sleep lying down in the bed beside me.
But, this is what I signed up for… in sickness and in health… for better or worse… I love this man with all my heart. I could not imagine my life without him. He makes my heart happy! Even in the worst of times he can still manage to be thoughtful, caring and kind. He suffers every day more than any human should ever have to deal with. The least I can do is to try to make things easier for him while he is hurting, and hope for a brighter day ahead…… to be continued
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Happiness runs in a circular motion..
you can sometimes come back around to what you thought was done.
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Annette_Emond
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Re: Tell us something about your SUFFERER
« Reply #39 on: Nov 4th, 2003, 10:18pm » |
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continued..
Many of you may not know that Dave is presently completely disabled with a second mysterious disorder. He was hit very hard and fast with a cluster attack on August 26 of this year. It took even him by surprise, and he lost his balance in the office chair and landed on his butt on the floor. 2 hours later he had a strange “nerve” pain in his left arm. Over the course of the next 5 days that pain spread throughout his entire body, and in the ensuing weeks he became more and more unable to walk or use his fine motor skills. I see him sit at the computer when he can and take over an hour to type a simple paragraph. If any of you have seen some of his lengthy posts on the boards, know that they took him hours and hours to complete. I could have typed the same thing in five minutes if he would dictate it for me… but he believes in the personal touch. Part of supporting is to let. I have to stand back and watch him struggle to do things I could accomplish in seconds. I have to stand back and let him suffer through these headaches ( God I wish they could come up with another name) and this other difficulty, to be there if he needs me but to let him do what he can himself. I have to not hover. I have to put myself and my needs on the back burner a lot, but hey… nothing better than a good pot of soup that has been simmering for awhile.  Always remember through the bad times, When it’s good it’s great, and when it’s bad, you always have the good to look forward to again. God Bless you all… hold on .. you got yourself a ride on the roller coaster of love.
Annette Emond
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Happiness runs in a circular motion..
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TxBasslady
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Re: Tell us something about your SUFFERER
« Reply #40 on: Nov 4th, 2003, 10:45pm » |
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Wow Annette......great post !
You must be a great supporter. Dave is so lucky to have you.
Sending lotz of prayers to you and Dave....and lotz of pf vibes.
Thanks for sharing your story......
Jean
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Mastifflvr28
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Re: Tell us something about your SUFFERER
« Reply #41 on: Nov 5th, 2003, 1:23am » |
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Wow Annette,
I had NO idea you and Dave have only been married 3 years! I woulda guessed at least 20!
Your support is amazing...and even more amazing now with the NEW afflictions.
Keep on truckin, take care, both of you,
Love ya,
Mast
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Ree
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Re: Tell us something about your SUFFERER
« Reply #42 on: Nov 5th, 2003, 8:53am » |
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Annette...You are the most dedicated supporter. and because of your post I am touched by any of Daves posts... We all love him here so much... You just hang in there. Your relationship is a true gift. You both were so lucky to find each other... God Bless you both Ree
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Margi
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Re: Tell us something about your SUFFERER
« Reply #43 on: Nov 5th, 2003, 10:29am » |
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Annette, you truly are a star among us. I remember the time when you two were getting married, how excited Dave was about you I remember his posts on the old board about this lovely Canadian lady he had met online and we were all very happy for you both.
Having sat across the table from you in Vancouver (on Dave's birthday too!) I could see the depth of the love you have for each other. You two face life with quiet grace and determination - we could all take lessons from you both. God really HAS blessed you and it really shows! He's also given you both some pretty big challenges - but that's because He knows you can handle them together.
Keep up the great work, Annette - I loved your words "you have to let" - that really touched me. For a "newbie" supporter, lady - you've quickly become an expert. You've mastered techniques that it's taken the rest of us a lifetime to learn.
And, to Ree - thanks again for putting this post up. What a great idea! I'm going to try to stick it up here at the top, so it doesn't get buried.
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kathy copelin, ch.com 8/8/06
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #44 on: Nov 5th, 2003, 6:22pm » |
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Annette,
Bless your sweet, sweet heart. I do believe you are one very special gal. My heart goes out to you and your love, Dave. We are all praying for relief and answers for you all. Please know that we are all in your corner and are willing to do anything we can to help....even if it's just lending an ear.
Love to you and Dave....
Jacks
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lioness
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Re: Tell us something about your SUFFERER
« Reply #45 on: Nov 5th, 2003, 10:20pm » |
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All I can say is.......WOW.........I have not been with my sufferer long, but hope to be with him the rest of our lives. He is a great guy wonderful and caring and does not deserve this pain. I just hope I can be as much support to him as all of you are to your sufferers.
Bless you all for the things you do for the sufferers in your lives. You are all truly angels.
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A_Clusterhead
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Re: Tell us something about your SUFFERER
« Reply #46 on: Nov 8th, 2003, 2:55am » |
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My sufferer does not have CH, my sufferer lives with one who does. This is a two way street, but we both have to travel in the same direction. There are many off ramps along the way, but my sufferer has chosen not to take them. I could easily understand if they finally pulled off, as I can be quite a challenge many times over. Although we are in the same lane, heading the same direction, there are times I can speed off alone, leaving my sufferer behind, lonely and looking for where I might have gone. I’m usually found up the road a ways with a flat tire, but have no jack. My sufferer always has that jack, and with a lot of work, can get me back on the road again. They are tired from looking for me, they are frustrated that I left them behind, they are exhausted from having to work hard at fixing my problem. For a while, I try to treat my sufferer as best I can, to consider their needs and drive behind them, always in the rear view mirror. But, as time goes by, so does the distance, my foot eases off the gas until my sufferer is again out of site. During this time I am lost, lost in my own self pity or denial, hoping if I let the gas off enough, the engine will fail and all will end. After some time of slowly coasting along, I see my sufferer, waiting for me at the side of the road. As I go by, not paying too much attention, I feel that harsh bump from behind, it may take many bumps to push me on, all the time denting the bumper deeper and deeper of my sufferer. How much can they take before the bumper falls off and there is nothing left to push with? How many repair shops must they pass where they could have time off to fix their own problems?
Finally, we both run out of gas, we meet at the filling station, it is time to talk, it is time for my sufferer to vent their frustrations as well as time for me to listen and understand. We come to agreement, we will drive along together never letting these things happen again. But, the road is long, and we soon learn that it is one huge circle, never ending.
The routes I take begin again, and my sufferer has to go through the same frustrations as before. Why do this over and over again? Are they using better gas? No. Do they have better tires? No. Are the vehicles is better shape? No. It has nothing to do with any of these things.
It takes love, compassion, endurance and faith, more than we can comprehend. While I’m out driving on my own little road, thinking my vehicle is more damaged than anyone else’s could possibly be, when I use all my mirrors, I can see a far more damaged vehicle behind me, one that deserves much more attention than mine.
My sufferer is my supporter and does not suffer from CH, but from my lack of ability to abandon my beat up vehicle, fix theirs, and ride in the same vehicle together, where we could fix it together until it shines like new and we could take the next off ramp together away from the circle and ride into the future on a straight road sharing everything along the way. I can only ask forgiveness, and try and try until it is reality.
(To all you fine supporters of us Clusterheads, no words could convey how much we appreciate your endless efforts to keep us going. The role of the supporter is vastly underrated and should never be so. I hope myself and other fellow Clusterheads can try our best to remember that there is more than one suffering with our CH.
Thank you for being there, we love you all.)
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Margi
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Re: Tell us something about your SUFFERER
« Reply #47 on: Nov 8th, 2003, 2:52pm » |
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This is a very cool post. Thank you for your kind words, A_Clusterhead.
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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jrmom
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Re: Tell us something about your SUFFERER
« Reply #48 on: Nov 9th, 2003, 1:40pm » |
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My little sufferer is 25 and has had to deal with CH for 15 years already. At this time she is in an episode that has lasted over 3 weeks. She has had some luck the last couple of years, with episodes being shorter, and less of them, however, now it seems she is back in the cycle again. I don't think it matters how much experience a supporter has, or how times you go thru the drill, when your loved one is suffering it just rips you up.
Since it appears as if we can't fix it or abort it with steroids, it's time for me to leave my home in the Southwest and head to the West Coast.
My clusterer becomes so isolated during these episodes, she won't allow friends to help out. She has been unable to even go to the pharmacy, store or do anything for that matter.
We tried to wait it out, in hopes it would end, but now my gut says it's time to go and just be there.
Do any other supporters find theirselves in this position?
Where their loved one closes everyone out, except for close family members?
Thanks for letting me air our frustrations, am leaving in the morning. JRMOM
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Margi
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Re: Tell us something about your SUFFERER
« Reply #49 on: Nov 9th, 2003, 4:51pm » |
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Absolutely, JRMom, we've all seen our sufferers shut almost everyone out. We can't put ourselves in their place but we can try to understand where they're coming from. The sleep deprivation. The levels of pain that no being should ever have to feel. The fear of the next attack. It's got to be totally overwhelming and all consuming for them.
Hopefully, she's using oxygen as an abortive and has tried the Dramamine to get her through the night (it's availble without prescription)? Imitrex? Verapamil? There are weapons we can fight this with, just no magic bullets yet.
Go to her and just hold her. That's what she needs most of all, from you - your understanding and love. I've got a pretty good feeling that you're very good at that . We all get frustrated, just hopefully not AT our sufferers, but rather at the clusters themselves.
Safe journey, Mom - please tell her to check in here too. It will do her the world of good to find others who have felt her pain.
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http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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