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Title: New guy who just needs to vent....sorry. Post by Vince859 on Nov 12th, 2003, 7:48am Hello all..... Sorry to see so many of us out there. This is my very first post as I just joined a moment ago. I live alone and my one-eyed cat doesn't seem to understand my clusters. So, I get to vent to you.....I apologize in advance as I'm sure if you haven't lived it you've read it before. First please forgive my "rambling"...it's been a very long night. My recent bout with CH started about 3 months ago. The episode prior to that was 4 years ago and I thought finally I've outgrown this damn monster. I've been a sufferer since I was roughly 19 and I'm now 44. Isn't this a young man/woman's issue??? I always thought so or had been told so. As I sit here on my right arm is a blue band from Bryn Mawr Hospital emergency where I just spent the evening. I arrived home from work at about 11 p.m. Earlier a CH, my third of the day hit me while at work and I used my last injection. My stomach looks like a bruised and sometimes bloody pincushion. I hate sticking my thigh and my arms hurt too damn much so I opt for the stomach...44 year old paunch does have some benefits I suppose. At about 11:30 last night I was bombarded with no meds so I tried to sweat it out. That decision lasted all of about 10 minutes. My CHs manifest themselves quickly going from a tightness in the back of my neck on the left side to full blown in about 2 to 3 minutes. The injection is the only thing that intercedes in a timely fashion. I used to carry around those little E-tanks of O2 before Imitrex was on the market but it had little effect. I remember playing in pool tournaments and having to excuse myself to go out to the car and lay down while hiding as I breathed O2 until the headache went away or the tank ran out. The latter of the two was usually the case. Tonight's run-in landed me in the emergency ward as I simply couldn't take it any more. My rationale was, hell, I'm paying the insurance so I might as well use it. I actually drove to the hospital but lucklily it's around the corner from where I live. I registered with a kind and compassionate woman who seemed to understand my grief as I sat there hunched over, writhing in agony, my head in my hands, massaging my left temple and combing my scalp with my fingertips in an effort to relieve the pain. Obviously to no avail. Once I was seen by a nurse, another genuinely kind soul, I explained the issue of not having any more medicine. Evidently my insurance company feels it's more profitable to relegate me to 25 days of pain per month since they'll only pay for 6 boxes of two refills. One representative even told me to ask my doctor for freebies. lol Eventually this evening the nurse gave me another Imitrex injection and the episode subsided about 75%. However, evidently since I had used 2 others earlier in the day this third one decided to rear IT'S ugly head. In roughly 30 seconds I went from "thank god this one is over" to sheer horror. My entire scalp felt like someone had placed a scalding cauldron on top of it and it felt as though my skull was being peeled apart shard by shard. I have never felt such pain in my entire life. At the time the nurse was attending to other patients and luckily saw me bolt up in the bed and clutch my head in what can only be described as a bad scene from an old Vincent Price movie. She came in immediately and put in an IV as I started to hyperventilate and my blood pressure shot up in a way that would make the Dow Jones envious. My brain is scrambled eggs right now so I can't remember the name of the medication she gave me. It sedated me and began to ease the pain in about 10 minutes but it took a second dose to more fully remove the agony. Now my skull feels like one big gaping wound so much so that altering the position of my hair actually hurts the surface of my scalp. I lay there for roughly 8 hours until the pain subsided enough for me to leave. I asked the doctor, another very nice gentleman, if I could head home. He informed me earlier that I would not be permitted to drive and suggested he contact someone to come get me. Well, there is no one....unless my one-eyed cat suddenly passed his driving test and neglected to tell me. He suggested they be permitted to call a taxi for me. I graciously declined as I simply don't have the money due to the expense of my meds.....you know.....the ones I no longer have due to my insurance company's bottom line. So, I asked if I could walk home...eventually he gave in and as I walked out of the emergency room into a cold November rain I began my trek home. My legs felt like rubber bands due to the IV I was given so I'm happy I heeded the advice not to drive. Arriving home I climbed the steps to my apartment, went in and without so much as a hello my one-eyed cat started asking for food and water. Ain't life grand. Thanks for listening.....there's little doubt in my mind you've all been there or know someone who has. I sincerely hope all of you who suffer will be in remission for the balance of your lives. Vince |
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Title: Re: New guy who just needs to vent....sorry. Post by Prense on Nov 12th, 2003, 7:56am Welcome aboard Vince! Your sense of humor through this is incredible! What prevents are you taking, have tried, etc.? I am a chronic sufferer since age 21 (10 years ago)...I really hope they disappear by my low 40s. Of course, I'd like them to disappear any day now! ;;D Just wanted to say hi, and welcome... Hang in there! Chris |
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Title: Re: New guy who just needs to vent....sorry. Post by Opus on Nov 12th, 2003, 8:10am Vince, Sorry to here you can't get meds, the attack in the er was probably a rebound hA even though you describe it as the worst pain you had ever felt. Usually rebounds are less than CH. The only thing I saw as different from me is that you said when hit you would go lay down in your car. For me laying down is not an option and a car leaves little room for the dance. Anyway check the Imitrex tip button to the left and possible increase you meds by 3 and reduce you rebounds. I have learned already to stay away from the er as they don't help much. I hope you find some relief from the beast, and remember this is the place to vent. PFDAN Opus/Paul |
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Title: Re: New guy who just needs to vent....sorry. Post by ZAIRA on Nov 12th, 2003, 8:36am Happy if you have found this site. The fact that we exist and bear each other has changed our lives, it will be the same for you ;)! BTW, just wanted to tell you HELLO and WELCOME IN THIS VALE OF TEARS! PFDAN to you, Zaira :-/ |
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Title: Re: New guy who just needs to vent....sorry. Post by thomas on Nov 12th, 2003, 8:40am Welcome aboard, theres lots of stuff on the left to read. |
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Title: Re: New guy who just needs to vent....sorry. Post by BarbaraD on Nov 12th, 2003, 8:41am One thing I love about this board.... even in the darkest of pain times, a sense of humor still comes out. Vince, while reading your post, I was touched (been there done that) and laughing at the same time. Not at you but with you. Welcome aboard. Clusterville is a nice place to be when you need to vent or ask questions. Sounds like you need some prevetive meds. The imitrex seems to be causing rebounds (that's another thread on this board). have you tried cafegot? Sometimes it will last longer than imitrex (at least it does for me). Go to the left and read how to cut your imitrex dosages down to make it last longer. Again, welcome. Hugs BD :D |
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Title: Re: New guy who just needs to vent....sorry. Post by Cooked Brain on Nov 12th, 2003, 8:50am [smiley=hiya.gif] Vince, and welcome! Feel free to vent anytime you need to, we'll be here to listen... hang in there and be tough! |
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Title: Re: New guy who just needs to vent....sorry. Post by drnoe on Nov 12th, 2003, 12:24pm Hey Vince, I too have a one eyed cat running around. And I've shared a lot of the other stuff, too. Huge bummer. Yeah. The HAIR hurts. Someday we'll laugh. Til then I'm hurting for you At least you've come home. Dan |
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Title: Re: New guy who just needs to vent....sorry. Post by Woobie on Nov 12th, 2003, 2:36pm Well, HI [smiley=hiya.gif] Vince.. and welcome to Clusterville. I like yer sense of humor! [smiley=clown.gif] Why does your cat have one eye?? [smiley=frown.gif] There's a lot of people up in yer neck of the woods... They even have their very own CHAPTER!!! [smiley=thumbsup.gif] PF to you!! tina |
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Title: Hey New Guy.... Post by Mr.Happy on Nov 12th, 2003, 2:58pm Yo Vinnie! Great rant. You're not alone. No, really.....you're not alone. I live in Media, Joe lives in Springfield. We're probably the only ones around here that can say Bryn Mawr, Bala Cynwood or Schuykill, and don't think they're strange words. Give a yell. (randy@ouchpanj.org) Let's do hoagies, RJ |
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Title: Re: Hey New Guy.... Post by Woobie on Nov 12th, 2003, 3:27pm on 11/12/03 at 14:58:34, Mr.Happy wrote:
NO NO NO Happy [smiley=nono.gif] instead of "give a yell" ya just say.......... "HOLLA!!!" [smiley=me&mb.gif] Peace out, dawg! [smiley=heart.gif]tina |
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Title: Re: New guy who just needs to vent....sorry. Post by Little Deb on Nov 12th, 2003, 4:17pm Just wanted to say welcome also. Love to see a fellow pet lover. I used to excuse myself to go lay in the car too. Not to be confused with lying comfortably, resting in the car. I have had CH since well, 25 years. I had a 7 year remission once. Thought they were gone forever. Sorry sucker found me again. Anyway, hope you stay with us. We will be your support. Also, there are some forms for the ER that your doc can fill out on the OUCH site. Check it out. Keep up the chinster. Little Deb |
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Title: Re: New guy who just needs to vent....sorry. Post by Ree on Nov 12th, 2003, 8:10pm Hi Vince glad you found us but sorry you had to look for us...Your discription was something that we have lived and am glad to say are in remission from right now. My husband is eposodic and has just ended a 13 week cycle. Good luck and welcome...........ree |
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Title: Re: New guy who just needs to vent....sorry. Post by cathy on Nov 13th, 2003, 3:47pm Hi Vince sorry your back in cycle and having such a tough time....just wanted to say [smiley=hiya.gif] and welcome you aboard!! Stick around, whats the cats name.....we have a site here for clusterpets too. Cathy :) |
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Title: Re: New guy who just needs to vent....sorry. Post by Svenn on Nov 13th, 2003, 4:18pm Welcome to Clusterville. You are among the best friends ever here. Glad you found us Just read ask and be yourself The mad viking up north Svenn |
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Title: Re: New guy who just needs to vent....sorry. Post by Major_Headcase on Nov 13th, 2003, 4:52pm Vince, Welcome to THE place online to vent about CH. It's an oasis of understanding, kind, supportive folks ... until we get to know you, then the sarcasm and wise cracks kick in. ::) Your ER story was as funny as it was painful ... I don't know how you managed to write that well after the time you had. Does your doc prescribe any preventitives for you? You didn't mention any in your post ... there's a TON of good information on preventitives and abortives here. Do a search on: Svenn AND cocktail ... Svenn's methodology works for me. But the key is to find out what works for you ... as you read the posts on here you'll see that what works for some doesn't work for others ... CH preventitives = "different strokes for different folks" So vent your pain any ol' time Vince, you've come to right place. -John [smiley=twocents.gif] |
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Title: Re: New guy who just needs to vent....sorry. Post by Charlie on Nov 13th, 2003, 5:09pm Welcome aboard and stick around. You'll find a lot of good ideas here about dealing with this horror. Your description isn't unfamiliar to us. This is one place you don't have to worry that we don't understand The following may help. It needs a rewrite but it was very helpful to me: http://www.netsync.net/users/charlies/ Beautiful writing by the way and a great rant. Glad to have ya. Charlie |
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Title: Re: New guy who just needs to vent....sorry. Post by nmemoryofDWS on Nov 14th, 2003, 8:19pm Hi Vince!!! Welcome, I'm new myself. I just joined this evening also. I dont suffer from the CH of course, but I recently lost a very dear friend that felt he could no longer live in pain. So I'm here for support. Feel free to contact me anytime if you want to talk, I'm all ears. Tam |
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