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Topic: Tell us something about your SUFFERER (Read 7675 times) |
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Ree
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Tell us something about your SUFFERER
« on: Sep 16th, 2003, 1:06pm » |
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We all know each other but some of us have been here so long we forget detail. Can everyone add something about their sufferer. First name, eposodic or chronic, how long, treatments ? What works? Maybe we can help some of the newer people, as well as refresh some of the old information.
I'll start this~~ My name is Ree, my husband Dave is a sufferer of Eposodic Cluster Headache. We have been together for 15 years. Dave has been suffering since his mid 20s he says so, about 20 years. Before we started dating he didnt know what was wrong with him. After several docs took a look at him and several trips to the ER where docs would think he was just looking for drugs. Thinking I finally found a guy that loved me and he was going to die of some weird brain ailment, I finally found a physician that knew his stuff. He then sent us to a great Neurologist in Wellesley Massachusetts Dr L. Dana Dewitt. She has tried many treatments in the course of time that Dave has been her patient. More recently (past 2 cycles) Neurontin as a preventative and it seems to keep the attacks tollerable til peak of the cycle. His most recent cycle started on July 1st and is hopefully over. He has been pain free 6 days. Dave also had some great results with 02 this cycle and found that if he treated the shadow that comes after an attack he has longer pain free periods in between. I am interested in mentoring if any new supporters need an ear a shoulder or I should say eyes to write to...ree16angel@aol.com I also suffer from Chronic Migraine (not the same but still pain without the years of remission in between) thanks Ree oh I should also add in case your wondering Dave doesnt type so I have been his fingers on this board for the past 3 + years...
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Margi
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Re: Tell us something about your SUFFERER
« Reply #1 on: Sep 16th, 2003, 2:27pm » |
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Great idea, Ree
Our story is pretty much the same as yours. My husband, Mike, is an episodic sufferer too - untreated, undiagnosed and unmedicated (other than for SINUS infections that some idiot doctor kept throwing at us  )until we found this site 4 years ago (thank you DJ!!). In that time, we've learned about oxygen, water water water, and, Mike's last cycle: prednisone burst, verapamil and lithium. Mike's last cycle was his longest ever, and we can't help but think that the meds prolonged things. He's at an age now where his remissions are longer though, blessedly, but the cycles seem to be more brutal too. I guess you don't get nuthin for nuthin, huh?
I'll never forget seeing that first cluster attack, though....scared the crap outta me. I wanted to call 911, I was sure he was having an aneurysm or something, but he knew better. It wasn't until 2002 that we finally found a doctor (the chief neurologist, in fact, at our Foothills Hospital here in Calgary) who actually knew what he was talking about. After a few heated emails and a VERY sorry receptionist, Dr. Becker, took us in within hours and had Mike on the pred burst (nasty stuff, that). I don't think THAT receptionist will ever try to put a clusterhead in cycle on their ONE YEAR waiting list again. We supporters have to have sharp teeth to survive.
OK, next? Mrs. Jackie? you got your ears on? Tell us about Blake. Line forms to the left here....
thanks for doing this, Ree - it really might help a new supporter landing here.
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #2 on: Sep 16th, 2003, 4:59pm » |
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Wow.....where to start. It's a long story 
Blake started having clusters before I knew him. He had the first cycle about 15 or 16 years ago. It started in Oct., lasted 1 month and was gone for a year. The next year it came back and lasted 6 weeks and was gone for another year. The next year it came back for 3 months and was gone again. The 4th year it came back and never left. By this time I knew Blake but we weren't an 'item'. He was in my office one day after a doctors appointment and telling me about the "migraines" the new neuro was treating him for. I asked him to describe it to me and he did. His description didn't sound like any migraine I had ever had and at that time I was a migraine sufferer. Later I pulled my copy of Mayo's family medical book and started reading......there it was.....CLUSTER Headaches and he fit the description to a tee!!!!! I called him and told him what he had...or at least what I thought he had. I'm sorry to say that I was right. He changed doctors and the new doctor started to treat him the best he knew how. Time goes on and Blake and I become an "item". I start going to the doctor with him and ask for a referral since we weren't getting anywhere. We are sent to Diamond Headache Clinic in Chicago (now that's another story...  ) The doctor said he was chronic as he had not been pain free for over a year.... Blake was hospitalized for 2 weeks and hooked up to IV's 24 hours a day. It did NO good. He was put on Verapamil, Lithium and several other drugs which I don't remember. They did tell us that oxygen was good but didn't inform us of the correct way to use it. We came home from Chicago with high hopes but were soon disappointed as nothing they did seemed to make a difference....Blake was still chronic with very few pain free days. We tried ANYTHING that we could think of...ANYTHING that anyone suggested. LOL...we even tried the magnet treatment...Blake went around for weeks with a magnet taped to his temple and slept on a magnetic pillow... 
OK...we got married a few months after the Chicago trip and floundered around for several years. Then one night about 3 1/2 years ago I was ready to take Blake to the hospital....which I had never done before. I didn't know what to do anymore. He was being beat to death with 10 to 12 Kips 10's a day and this had been going on for weeks. I was desperate and had no place to turn. He 'got easy' for a few minutes so I turned on the computer and did a search on cluster headaches....praying that I would find something new. Guess what I found  I noticed there was a chatroom on this ch.com site. I thought what the hell....I'm going in (never been in a chatroom in my life... ) I was greeted by Kip, Navygunner, Paco and some guy named Jonny...  They asked how they could help so I told them what was going on. I was told to ice down Blake's 02....put the line in ice water. It worked....the 02 started working again that very night. They asked that I stay on and let them know how it was working. I stayed on with those wonderful guys for a long time. They saved Blakes life that night and mine too. Bless their hearts. I sure miss Guns, Kip and Paco...that Jonny guy is still around...We've made wonderful friends here and we'll never leave this place even if Blake goes into remission tomorrow. You all are stuck with us forever!!!
Well....that's about it. We've tried meds. and more meds. Blake was on prednisone for almost 4 years but got off of it finally. He's now on Topomax and we may be having good luck with it....kinda early to tell.
I just want to say one more thing. Cluster Headaches SUCK. They try to steal your life, your happiness, your dignity and even your money. Blake and I made a promise to each other long ago. We will fight these together. When the pain free times come we won't let fear of the next attack steal our good times....we won't let CH be the center of our lives....we won't be ruled by the demon. We will fight the son of a bitch and kick his ass every time he rears his ugly talons. We won't be beat!!!!!! Blake is still chronic but we deal.
Whew.....that's about it...
Jackie 
Maybe I'll tell you about "the pain of a supporter" on another day... 
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Miss_Deleny
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Re: Tell us something about your SUFFERER
« Reply #3 on: Sep 16th, 2003, 7:01pm » |
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Hmm, well, lets see ....
I'm April .. I don't have CH but was once a migraine sufferer, so I know about them. Christopher (Prense) is my fiance' and has Chronic CH.
He had been having HA's for about 8 years prier to me meeting him. We met on the internet through a RP game we used to play. There were times that he would have to log off the game because of his HA's but all I knew of them at that time were that they were REALLY bad ones. I thought they were like the migraines that I used to get, you know the ones that you end up at the hospital because your pain is so bad that you lose your eye site. He didn't know exactly what they were at that time either .. just knew that they hurt like hell!
After about a year, I came to NM from FL to meet him in person. Two months after going back home, I moved out here to live with him and have been here since.
About a week or two after moving here, I started "seeing" him when he had his HA's. They were not and are not as bad as some of the people explain how theirs are but bad enough that it would break my heart seeing him in such pain. We tried everything that we could think of to ease the pain. Me thinking they were migraines, tried all the "migraine" cures and nothing seemed to help. He had been to doctors about the HA's before but still didnt know what was causing them. After a couple months of this, I finally told him he needed to find out what in the hell was going on. so he set up an appointment with the doc on base.
When he came home from the doctors, he told me that these HA's were called "Cluster Headaches". OMG! I thought is was a disease or something. He was given Verapamil as a preventive and Maxalt as an abortive. They didnt seem to do much other than knock his butt out after taken the Maxalt. Didn't get rid of the pain though. After a month or so, he went back complaining of the way he was feeling with the meds and they just raised the dosage. He tried the new dosage for a while and then said screw it and took himself off of them.
He seemed to be PF for a while after that and we thought that was the end of it .. he was cured!
Wishful thinking on our part because after a few weeks, they came back with a vengance! That is when he pushed the military docs into getting him a referal to a nero in town. It took a couple of months but he finally got the referal and about that same time is when he found this site. What a blessing!
This "nero" was a quack! Christopher went in there and told the nero what meds he had tried and what the results were. What did the nero do? He put him BACK on the verapamil at higher dosage than he was originally on. Christopher being the "laid back" person that he is, went along with the doc thinking that this guy must know what he is doing. After a while, he went back and told the doc that this was not working and the doc raised the dosage again. Again, after taking the meds for a while, Christopher went back again and told the doc the meds were not working so the doc put him on Topamax for a preventive but wouldnt give him anything for an abortive.
This is really when we were both reading about the different types of meds and the way they should be administered.
The doc had him taking the topamax and raising the dosage every week to the point that he was taking 300mg by the time he reached his 3rd week. The side effects were REALLY getting to us both! I was about to the point of paying a visit to that "nero" and giving him more than a piece of my mind! I started reading about Topamax and how it should be taken. I pointed out to Christopher that according to the information that I had read, he should not be taking 300mg until he had been on it for no less than 6 weeks. And that most of the patients that took it for CH found relief at a much lower dosage than that. Even at the high dosage that Christopher was on, it was not doing anything except putting him to sleep. That is when he fired his nero and got another referal to a HA specialist in a different town.
He was taken off of the topamax.
After 6 weeks of nothing, he saw a PA at a different military base and was put on Verapamil at 360mg as a preventive and imitrax injections for abortive. Waiting on the O2.
His appointment to his "new" nero is on Oct 30th.
Well, I guess that about explains him and his CH troubles to this point ... stay tuned for more information to come!
~April~
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Ree
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Re: Tell us something about your SUFFERER
« Reply #4 on: Sep 16th, 2003, 8:12pm » |
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This thread is off to a wonderful start what great supporters we have here. I like you Jackie thought I would find something different or a cure when I came onto the internet for the first time... I was shocked and relieved and sadened to find CH.com... Shocked because it was great, relieved because we weren't alone and sad to know that there were so many poor people out there suffering... love you guys ... lets try to get more supporters to post in this thread. thanks Ree
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Darleen
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Re: Tell us something about your SUFFERER
« Reply #5 on: Sep 17th, 2003, 8:08am » |
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This a fabulous idea so here goes....
My name is Darleen and my husband John suffers with clusters. I started going out with him in 1986 and he had them back then. For the first few years, we didn't know what they were until he was finally diagnosed. He has tried several meds such as Sansert, imitrex and Margi's water treatment. He normally takes Tylenol #4 with codeine to kill the pain. He is episodic and normally has them approximately every 2 years or so normally in the summer. He started a new job in January of this year and wouldn't you know it - bang - clusters hit for almost 8 weeks this time. It was really horrible with the new job and no sick time but we managed as we always do. Like Margi said his remission times seem to be getting longer but he is getting harder and longer each time.
I found this site back in 2000 (I think) and I remember thinking OMG there are other people out there like us. Although John doesn't post, I always tell him what's been going on with the site and OUCH as well and we sure hope to make it to a convention to meet other who suffer with these headaches as well.
I had a change to meet Bonnie this summer and it was like we knew each other forever. It was great!!
D
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Margi
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Re: Tell us something about your SUFFERER
« Reply #6 on: Sep 17th, 2003, 8:40am » |
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Wow. I've seen a lot of posts here at ch.com in the 4 years (minus 2 weeks) that I've been here, but Jackie - I gotta tell ya - YOUR post really rocked me. 
I have SO much respect for you supporters of chronic clusterheads. I honestly don't know how you do it. Jackie, you just take everything in stride and nothing phases you. You truly are the strongest woman I know, lady. In the years I've known you, I have NEVER heard you complain or whine about the pain you have. And I KNOW you have lots, gal.
To read the part about Blake getting hit 10 - 12 times a day and getting NO break for all these years.....it just blows me away at how you both manage to "deal", as you say. Mike will peak like that, but....his cycles END and we both get a break.
You and Blake continue to be in my prayers, Jackie, and here's hoping the Topomax is the magic bullet you've been searching for.
And, yes, please DO write about supporters' pain. In my eyes, you're the expert on that subject and it would probably be very cathartic for you.
love and hugs,
Margi
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Ree
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Re: Tell us something about your SUFFERER
« Reply #7 on: Sep 17th, 2003, 12:24pm » |
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Attitude is everything and Jackie has the best attitude...I really could learn alot from you Jacks...
Darleen thanks for posting, and April thanks for the backgound we can learn so much from each other here. ree
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BonnieW
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Re: Tell us something about your SUFFERER
« Reply #8 on: Sep 17th, 2003, 6:09pm » |
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The stories are all so much alike. Warren and I were married very young, and so I have been with him since the very beginning of his Cluster Headaches. We didn't know what was wrong with him for so many years, just kept going to the doctor and trying drugs and different therapies. One day I found an article in a newspaper where a doctor would answer questions that people sent in - and there was our answer!! It was so obvious to me that that was what Warren was suffering with. I cut out the article and back he went to the doctor with it. He did see a neurologist here in town finally, but he was worthless. We even drove over to Vancouver Island once to visit a retired chiropractor who was supposed to have some miracle cure for cluster headaches!! He had Warren lay flat on his back and then he put his two fingers under his neck in some postion (that I was supposed to learn and then do when Warren was having an attack!!) Anyhow, after 20 years of pain and frustration, Warren had his worst cycle ever in March-April 2000 and I was at my wits end. That is when I went to the internet and typed in cluster headaches. I found this site and WOW! We went to Las Vegas that year and since then have discovered oxygen and DHE - and also found an excellent neurologist who lives 500 miles away, but knows what he is dealing with. We are much more in control during the cycles, they actually are getting worse and longer as he gets older, but, thank goodness the breaks in between are longer too. I have said before that the worst sound in my life is waking up to Warren moaning beside me in bed, and just knowing that he is getting hit, and we are in for a fight. I cannot imagine how you that are married to chronics deal with it, but I guess it is just something you have to do right? My heart goes out to all of you....
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Ree
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Re: Tell us something about your SUFFERER
« Reply #9 on: Sep 17th, 2003, 7:02pm » |
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Bonnie girl I am so glad to know you... thanks for posting and love to Warren too... ree
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Woobie
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Re: Tell us something about your SUFFERER
« Reply #10 on: Sep 19th, 2003, 6:11am » |
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Wow - I dont even know where to begin...
Ramon and I have been together for about 18 years. We have two girls, 13 and 9. (who fight like crazy).
Ramon (Cerberus) has had these HA for atleast 5- 6 years that we can remember.. so I've been with him from the start too.
He was only properly diagnosed with them last year (Finally!!!!) Usually, 2 cycles a year...They were always in Sept/October.. and in March/April.. and alway diagnosed as sinus infections. Or inflammed nerves in the sinus. That was in Iowa - misdiagnosed for 5/6 years.
I am ashamed to admit it.. but based on what the Dr's had always said.. "sinus infections".. and having HAD numerous sinus infections.. I always thought Ramon was faking the pain.. or, I guess, exaggerating it.. and I was - quite frankly - annoyed by it all.
Then, we moved to Illinois, got a new Dr. Then his next cycle hit. We assumed it was a sinus infection again.. went to the dr. Ramon told the Dr. "It's the same pain as all the other sinus infections I get every year." So the Dr. gave him antibiotics.. without question.
But it got worse, and worse...so..Went to the ER a couple times in that cycle last year, and they said "it's JUST a sinus infection.. you have the antibiotics already in your system...." and - of course, labeled him a "drug seeker" (again - but now he's a drug seeker in 2 states), but gave him demerol anyway....
So, the next day I made an "emergency appt" with our family Dr. Ramon got slammed with one in the Dr office.. and our Dr. took one look at him.. looked at his eye and his nose, and said "Let me try something, I think it's clusters".
He brought out the O2, and I threw a FIT. "what the hell is oxygen gonna do.. they gave him demerol last night in the ER and it didn't do anything". I was pissed!! HA HA HA.. but in 10 minutes, he was sitting up smiling. Saying "WTF? That's IT? OXYGEN??"
We left his office with a script for imitrex (pills, tho) and indocine (which didn't work) and verapamil.
Then we came home frome the DR and IMMEDIATEly turned on the computer, typed cluster headaches into GOOGLE, and been here ever since.
Once I read a couple things ... I was in tears... crocodile tears. I felt sooooooooo bad for doubting his pain all those years.. and being annoyed, and pissed off by it. I couldn't believe that I didn't believe they were as bad as they were. Every time he missed work because he was too tired from being up all night with a headache.. i was mad. And MAN - did I feel like pond scum. I still do. I will never forgive myself for not believing him.
Margi and Jackie and Jonny helped me with getting the O2 - (what a mess I was.. eh?) So, with everyone's help here, we got thru that cycle.
We decided to buy our first house and move during the time his next cycle was gonna hit.. and it worked.. staying stressed kept the beast at bay.. (atleast I like to think it was all the stress that did it.)
He is about to enter the sept/oct cycle, and I think - from being here for the past year, that we both know enough to get him thru this cycle. We already have ammo.. the O2 tanks are filled and waiting, and the imitrex is stockpiled Got a "battle plan" this time.
I feel lucky that I found this site. I have called the Dr on a couple of things, and I'm sure most of you have too.. because of this site, and the people here.
Ramon kinda likes it here too!
Tina 
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| « Last Edit: Sep 19th, 2003, 6:28am by Woobie » |
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #11 on: Sep 19th, 2003, 9:56am » |
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Wow.....
These are some stories for sure!!!
Thanks for the idea, Ree.......'ya done good, honey'
I see a few differences in the stories but no significant differences....it's all kinda the same deal.
There is one BIG thing that stands out and that is the willingness in all of you to fight like hell for your clusterhead....for all clusterheads. Bless your hearts...
Jacks
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Margi
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Re: Tell us something about your SUFFERER
« Reply #12 on: Sep 19th, 2003, 10:13am » |
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Amen, Jackie - great posts, Bonnie and Woobie (and welcome back, girl )
Interesting to note here too - most of us in this thread have been with our sufferers about the same length of time (except Bonnie and Warren who, I think,married each other when they were TWELVE! )
Mike and I got together in 1986, same as Darleen and John, so 17 years now for us all. Jackie and Blake, Ree and Dave and Tina and Ramon - all about the same length of time. Was there a shift in the universe when we supporters all found these guys, or what? 
I just have one question......WHEN do we finally get our medals, ladies?
p.s. Bonnie, girl, I felt what you said about hating to hear those signs in the night. Or to see that look come over their faces as the smiles leave their eyes and they get set to do battle. It's the most helpless feeling in the world for a supporter.
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| « Last Edit: Sep 19th, 2003, 10:19am by Margi » |
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cathy
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Re: Tell us something about your SUFFERER
« Reply #13 on: Sep 19th, 2003, 12:21pm » |
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Hi Cathy here....Wes has suffered with Episodic clusterheadaches since 1997 he went four years with only over the counter medication which as most know have absolutely no effect whatsoever after countless visits to the Doctors and in the end paying to see a neurologist we got a diagnosis and he was given Imigran/Imitrex which for wes worked most of the time.
We have been together 11 years and have 4 children, his clusters have brought us closer together, but before his diagnosis it nearly split us up, he got sick of seeing doctors, sick of taking different meds....which didn't work, he suffered re-bound headaches for sure from the paracetamol which he took like sweets and sick of me nagging him to stop taking the meds which weren't helping, I got sick of not being able to go out, sick of not getting any sleep and sick of him having headaches all the time...at least now things are under control now, but the pain of watching someone you love going through this tears you apart.
Wes's clusters have got worse as each cycle has hit, usually April and Sept/Oct....thanks to this site which I came across after finally getting him a diagnosis in November 2002 I have found friends and support which I thank everyone for.
Unfortunatley in February Wes had a heart attack this is still being treated and looks like a by-pass is on the menu....however since the heart attack he has only been hit a couple of times but has been shadowing heavily recently and his cycle is imminent if it stays true to form, due to the heart problems meds are not an option for him so he has the O2 at the ready!!
This is one of the most devasting conditions I think anyone has to deal with and my heart goes out to anyone who has to support of deal with these.
Wishing you all PF times and prayers.
Cathy
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BonnieW
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Re: Tell us something about your SUFFERER
« Reply #14 on: Sep 19th, 2003, 2:44pm » |
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Margi,
And aren't they lucky they found us??!!!
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Margi
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Re: Tell us something about your SUFFERER
« Reply #15 on: Sep 19th, 2003, 2:54pm » |
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LOL Bonnie, yer damn right!!
or as DJ would say........."F**in' eh", they are!
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Ree
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Re: Tell us something about your SUFFERER
« Reply #16 on: Sep 19th, 2003, 9:53pm » |
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Every story the same yet each with its own twist. Wes has to suffer without Meds that has to be so hard... Tonight Dave got hit again after we thought his cycle was just about up.He got hit last night and tonight same time...I felt so bad with him sitting there saying what did I do? What did I do? I simply made him his tea got him his meds and promised it would end. Jackie can't do that for Blake. I don't know how you do it Jackie. You are so brave. Woobie thank God Ramon has you. Woobie Bonnie Margi Darlene Jacks Cathy April Cootie and many many more~~we all belong to the same army and thats why we have to stick together. I am touched by all of the words I read here today. Testimony to the pain we witness every day. love ya lots Ree
ps Im off to hunt Cootie and some of the others down to tell their stories.
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cootie
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Re: Tell us something about your SUFFERER
« Reply #17 on: Sep 20th, 2003, 1:17am » |
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Ha-ha-ha.....the hunt for cootie is over Ree.......I'm here ! Ain't been here in ages......I get so caught up 'on the other side' here I guess and don't git any work done. Amazes me jus how 'similar' alot of the stories are......b-4 I came here I NEVER ever met or talked to anyone with CH or any knowledge of it. No one can really get the 'concept' of what goes on in a ch'rs life unless they have lived it.....they don't have a clue.......almost impossible to explain so they even get an idea of what goes on. Almost like havein a deep dark secret. Oh....I'm Pam by the way.......husband is Brad who has had this crap for about 20 yrs. We been married close to 30 yrs if you can believe that.......seems crazy....time flies ! First year of ch we had no idea what the heck was goin in....as usual we fear'd the dreaded brain tumor theory.......didn't know what ta do. He started out pretty much chronic.....had em every day but they went like clockwork at 6:00 am and 6:00 pm for a long time.....problem was him gettin em rite b-4 he left for work for the long drive then noisey presses at work and instruct the guys there jobs and calculate paper sizes ect. No meds that first year or so......he ate asprin and over the counter pain meds like candy thinkin they'd work if he took em early nuff. Thought he was maybe allergic ta sumthin or had severe sinus.....geeze. They fineally went away........so we tried ta forgit it wardin it off as sumthin odd and jus glad it was over. SUPRISE........they came back in 3 years and he tried ta fight em off on his own till I got him to my doc. Brad wouldn't go to the doc.....typical guy so I made him....we were gettin into hassles over it and had a 4 yr old that was hard to handle. Doc of course prescribed anitbiotics and sinus and cold meds or sugested over the counter ones also. They never went away so he went back and ended up with tranquillizers which he wouldn't take anyhow for a stress condition they thought....he works around big presses and not cool ta be groggy or dopey or out of it around them ! So back to the doc ......he got so MAD and impossible ta be around when under attack......not pleasant at all! He'd git hit while out or everywhere......I tarted to resent puttin up with it cuz I had NO idea what he was feeling and he wasn't gettin any pain relief and life got tougher.....neither one of us UNDERSTOOD what was happening. I was stuck home with a baby and looked forward to weekends out....he'd get hit and want to go home soon after we'd get sumwhere ! Fineally the next trip back the doc mention'd CH......he must of done sum reasearch "FINEALLY" !!!! He recommended a neuro.......got an apt and got on a better track with what was going on !!! Got on verapimil and imitrex pills.....he also did bio feedback. Cycles seem'd ta run about 2 months or bit less every 3 years. Now he goes to my doctor an internalist.....the neuro demanded he visit regular once to twice a year wether in or out of cycle to get treatment....and it was expensive and hassle goin all that way out there takeing off work.....he didn't want to go anymore when out of cycle and didn't want reminded I guess you could say ! When his next cycle hit the neuro's office "had no mercy" for him......said they had a 3 month wait and would not fit him in earlier cuz of him not following there PLAN. Wanted me to come in and give them about $ 150.00 cash or credit card to hold him an apt in the next 3 months.......huh......sounded like a real racket !! So I checked with a new doc I'd been goin to in our area that actually knew a little about ch...and he had enuff interest he researched it more and was up on treatments and meds......he did us good. Rite now Brad's outa cycle....last one was a bit strange and didn't follow much of a pattern for hits......had shadows more then usual and longer then usual but cycle lasted bout 7 weeks. Have to fight insurence for more then 9 pills a month but doc does that for us. We actually have a new doc now this past year cuz ours left for an out of state job but recommended this new doc that has done a good job picking up where he left off. Sumtimes when I try to explain these ha's to freinds and family I get too caught up in the description and frustrate myself cuz I know they aren't gettin the total picture. It's been a strange life with ch........have watched Brad's face evolve into a monster.......he doesn't want anyone around when gettin hit and gets extremly testy so I lay out meds and water or whatever and turn down the tv and close curtains and go git busy elsewhere. He doesn't want babied or pamper'd or even talked to.....so it's the best way. We went to our first convention this yer in NY........wow........it's as hard to explain as explainin ch to a stranger........but this was a wonderful unexplainable expierience in NY ! Ya'll gotta go. Pam that is up too late for all I have to do tomarrow
Love to you all !!!!
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Ree
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Re: Tell us something about your SUFFERER
« Reply #18 on: Sep 20th, 2003, 7:57am » |
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Hey thanks Pammy Dave says careful or you'll get Cooties on ya........... love ya lots lady Ree
ps we got to get together!!!!!!
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespockethttp://www.prohawaiian.com
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Linda_Howell
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Re: Tell us something about your SUFFERER
« Reply #19 on: Sep 23rd, 2003, 1:15am » |
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hope you don't mind if an outsider(am I?) bumps this wonderful thread to the top.
bump bump bump....nope. That's my head against the garage door again.
LindaH
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Margi
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Re: Tell us something about your SUFFERER
« Reply #20 on: Sep 23rd, 2003, 1:23pm » |
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Thanks for the bump, Linda.
You? An outsider? Not in this lifetime, darlin.
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #21 on: Sep 24th, 2003, 12:52pm » |
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on Sep 23rd, 2003, 1:15am, Linda_Howell wrote:
Outsider......I think NOT, Missy. When you're not suffering you're supporting....hell, when you're suffering you're still supporting!!
Now I'm wondering.....does that make you a 'suffering supporter' or a 'supporting sufferer'... ???
Hugs,
Jacks
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judyw
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Re: Tell us something about your SUFFERER
« Reply #22 on: Sep 25th, 2003, 10:47am » |
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This is a wonderful thread and I would like to throw my two cents in here...and say thanks for all the support you have given and still give to your loved ones, and, especially for the support you spread around to the rest of us in the CH family...I agree with LindaH, to the top of the pile you should stay... ;D
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Tim_w
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Re: Tell us something about your SUFFERER
« Reply #23 on: Sep 26th, 2003, 3:02pm » |
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All I can say is with out our suporters ! most of us may not be here today! ;D Thanks to you all
Pain Free wishs around the room TimW
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Tara Ann
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Re: Tell us something about your SUFFERER
« Reply #24 on: Sep 27th, 2003, 1:25am » |
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(just wanted to let you all know you are appreciated)
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| « Last Edit: Sep 27th, 2003, 1:27am by Tara Ann » |
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