Author |
Topic: 5 weeks now (Read 1434 times) |
|
tnpruby
New Board Newbie
I love YaBB 1G - SP1!
Posts: 48
|
 |
5 weeks now
« on: May 10th, 2008, 10:29am » |
 Quote  Modify
|
Hello alll...........
I've been trying to log back on and well after it all here I am. I've been fortunate to have been here before , I am in a bout lasting almost 6 weeks. I am so glad to be back , everyone here is wonderful and supportive. Rock on. I am having trouble getting my husband to understand this disease. I am getting hit about 3x dy now , I wake him because of my cryin and fumbling with o2 tank, then I pace the house . His question was "When is this gonna end" How much more of this". I dont know,it gets worse before better, has mind of its own, I try to explain , I have given him material to read about CH. HE CLAIMS HE'S READ IT AND TELLS ME MAYBE THERES SOMETHING ELSE WRONG WITH ME. Then he wants to go out, I have a travel o2 , but still I am exhausted , I told him I dont do much untill its over. I feel like I am going crazy this time.  I just want to be left alone about it because I feel no one in my life understands, they all look at me with that look on their face.....Help
|
|
 IP Logged |
|
|
|
DennisM1045
New Board Hall of Famer
One wave at a time!
  
Gender: 
Posts: 1639
|
|
Re: 5 weeks now
« Reply #1 on: May 10th, 2008, 11:59am » |
Quote Modify
|
And that is why we come here. Welcome back hun. I'm sorry to hear you're in such a bad state.
Unfortunately you can't do much about your husband. Either he'll understand or he won't. You know this will all end soon and things will go back to normal again. Just keep telling him that.
If he's looking for "something else" it shows he cares and just wants your pain to end. It's not easy to watch us suffer. But don't let the guilt eat you up. You need all the energy you have to keep fighting the beast.
You'll find all the understanding a clusterhead needs right here.
o We know what you are going through.
o We live with the same pain you do.
o We are here for you.
Let us know how we can help.
-Dennis-
|
|
IP Logged |
Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
|
|
|
Jean
New Board Newbie
Gender: 
Posts: 50
|
|
Re: 5 weeks now
« Reply #2 on: May 10th, 2008, 2:35pm » |
Quote Modify
|
I'm so sorry that you are having such a hard time right now. You sound EXACTLY like me, last spring. Back then I didn't know about this wonderful place"Clusterville." Come here for the support that you need. I am learning that it is a great place to be.
My husband was a LOT like yours. He wanted to help but at the same time didn't quite seem to get it. I think a lot of it stems from the fact that many men want to be able to "fix" the problem. We all know, as of yet, there is no "fix". It may be easier for your husband to suggest that something else is wrong (sinus, allergy,ect.) than except that there is nothing he can do. Is this the first cycle that you have gone through since you have been married? It took a few cycles for my husband to really understand how it all plays out. Now he knows that it will end. I have to keep reminding him though. (myself too). Maybe bringing him to your next neuro visit would help.
Try to hang in there. Like Dennis said, there will be an end to it. Maybe try to talk to him and help him learn more about CH after your cycle ends. I know that during a cycle my emotions are not as calm as they may need to be to communicate well. Remember, YOU ARE NOT ALONE. I just learned that too.
 Jeannie
|
|
IP Logged |
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: 5 weeks now
« Reply #3 on: May 11th, 2008, 8:36am » |
Quote Modify
|
Are you working with a good headache doc? Using meds other than O2? Have you explored the material on the OUCH site? (And would you husband be willing to read the material there to learn about CH and so be better able to support you?)
O2 is not sufficient as the only treatment so please get back with more information.
|
|
IP Logged |
Bob Johnson
|
|
|
debOUCH
New Board Veteran
..i think to myself, it's a wonderful world..
Gender:
Posts: 211
|
|
Re: 5 weeks now
« Reply #4 on: May 11th, 2008, 9:13am » |
Quote Modify
|
i am sending hugs to you ....... .........i understand completely what u r going thru....................as others mentioned, no one can understand the pain, both mental and physical that we go through................your 'family" here will help you get through your rough times.............remember u r not alone....................feel better
deb
|
|
IP Logged |
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: 5 weeks now
« Reply #5 on: May 11th, 2008, 10:43am » |
Quote Modify
|
We do get damned frustrated at problems we can't take a wrench to...it's a guy thing!  That being said, sorry you're not getting support from your husband. I can maintain my sanity only because my wife has held my hand through 28 of the 30 years I've battled these things. She's the one who found this board for me.
Ditto to what Bob said, I hope you have a good preventative medication regimen and aren't relying only on the oxygen. Ogygen works great for me but I'd be draining a lot of tanks if I didn't have my lithium prevent on board!
Welcome back home, damned sorry the beast found you again.
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
mattus
New Board Newbie
membermembermem ber
Posts: 22
|
|
Re: 5 weeks now
« Reply #6 on: May 13th, 2008, 11:02am » |
Quote Modify
|
ruby, maybe ask hubby to register here - actual conversation with actual people (unless you lot are bots.....) who have what you have.
I hope the beast retreats.
Matt
|
|
IP Logged |
|
|
|
tnpruby
New Board Newbie
I love YaBB 1G - SP1!
Posts: 48
|
|
Re: 5 weeks now
« Reply #7 on: May 15th, 2008, 6:50am » |
Quote Modify
|
 Hi All..............
thanks from my heart and soul  , I am crying 
For a couple of reasons, First I am touched deeply,
second as you all know,my emotions are running low. I know things could be alot worse and there's people who are plagued with illness they cant cure or be rid of. However its wearing on me this way.
Since I last posted I have been getting hit so fast with attacks, I am flippin out. I am on Verapamil as prevent 3 x day,and take Relpax for hits. I am seeing neuro today to see what else we can do, I want remission so badly. I am praying all the time. I was diagnosed 11 years ago. eposodic. and been married for 8 years in September. I know this will end , the light is dim as of now tho. I am so freakin tired , I am extremely irritable, patience is non existant. I am miserable and angry, dont like how I am behaving and treating others.
Man oh man tHE BEAST BRINGS OUT A BEAST IN ME. I am a happy optimistic young woman and very kind. But seriously everyone I am a major Bitch on wheels these past few days. I dont like how I am behaving. The ones who are close know its not who I am truly but I cant help but feel guilty being such a tirant lately. I am soo tired feel like I could sleep for a week but I am terrified of giving the vulnerbility to that Demon inside my head torturing me. I am fighting but getting weak....Thank you all for the amazing support...I need you now, thanks for being there for me...My deepest gratitude
xoxoxx
Ruby
|
|
IP Logged |
|
|
|
debOUCH
New Board Veteran
..i think to myself, it's a wonderful world..
Gender:
Posts: 211
|
|
Re: 5 weeks now
« Reply #8 on: May 15th, 2008, 9:08am » |
Quote Modify
|
oh ruby......................i know exactly how u feel...............i started my first ever cycle on january 30, misdiagnosed for weeks, until i actually diagnosed myself thru this site! my hits have eased a great deal, i get maybe 1 hit a week, and shadows...........the only thing i am on, for a month or so, is elavil @ bedtime.......( I did pred tapers during cycle)(my hits were from 9pm-9am).............i tried going off, but it seems i get hit.................went down to 10mg for the past few days, and will c what happens..............just remember, YOU ARE STRONGER THAN THE BEAST! b4 i had Ch i would have never imagined i could get thru it, you will..............just keep venting on here, we all know what u r going thru...........sending lots of hugs and PF vibes.......
deb
|
|
IP Logged |
|
|
|
tnpruby
New Board Newbie
I love YaBB 1G - SP1!
Posts: 48
|
|
Re: 5 weeks now
« Reply #9 on: May 16th, 2008, 12:19am » |
Quote Modify
|
Thanks Deb for reaching out, I had hell of a day at Drs, was at my neuro's mercy crying in office today. I am starting on Pred tomorrow in hope for some relief. ordered more O2,  delivery is tomorrow , I am on last E tank.
The back right side of my neck is tender and aching. I've actually had this for weeks. I'm a righty. I was able to nap today I went to work after drs. appt and my boss took one look at me and sent me home to rest. Thank god for his understanding. I am so sensitive these days. I have been isolating myself. Managed to take a walk in hope to promote good vibes. I am gonna keep up my stride. I wish I could take day off tomorrow but I feel like I would be giving in to this turmoil if I do but I am exhausted......  . Anyway I wanted to say thanks I am lucky to have you folks , This disease can make you turn mad and feel completely alone due to its relentless toture. I am praying you are on your way to pfd , sounds like your getting a handle on it and I am soo happy for you. The relief that comes with that is priceless. Relish it. I took 9 mg of meletonin and I am gonna try to rest some, other wise I'll be back here soon. Hugs and pfw to you ..Rock on Deb and everyone  who has helped me with your support.
Sincerely,
Ruby 
|
|
IP Logged |
|
|
|
debOUCH
New Board Veteran
..i think to myself, it's a wonderful world..
Gender:
Posts: 211
|
|
Re: 5 weeks now
« Reply #10 on: May 16th, 2008, 10:39pm » |
Quote Modify
|
ruby girl.....if u feel the need to talk, please PM me and i will give u my cell # without hesitating.........................i live on long island, dont know where u be "hiding out"..............haha..........................PM me, and then u can call me whenever u want........wont give it out here so freely cause THOSE SINGLE MEN WILL BE A KNOCKIN ON MY DOOR!!!! LMAO........................... hope u feelin beta!
deb
|
|
IP Logged |
|
|
|
CostaRicaKris
New Board Veteran
Currently training for AFC half Marathon
Gender:
Posts: 179
|
|
Re: 5 weeks now
« Reply #11 on: May 16th, 2008, 11:04pm » |
Quote Modify
|
Hi Ruby,
Dennis is right, we come here because no one really understands this pain except those of us that have been through it. So many people say "it's just a headache" and have no idea the pain we are in. I'm so sorry your husband doesn't understand yet, but until he does, you have us.
You're in my thoughts
~Kris
|
|
IP Logged |
Visit my website: http://www.active.com/donate/amnhealthcare/KristinaMorris to learn more about Girls on the Run, a non-profit prevention program that encourages preteen girls to develop self-respect and healthy lifestyles through running
|
|
|
tnpruby
New Board Newbie
I love YaBB 1G - SP1!
Posts: 48
|
|
Re: 5 weeks now
« Reply #12 on: May 20th, 2008, 8:29am » |
Quote Modify
|
 
Hi All...
Well I started the pred and hits have tapered since friday!!!! 
I am having 3 hits a day but they seem to be getting closer to each other and dont last as long..anyone else notice this happening to them?
I could've strangled my husband the other day, during an attack I was pacing, pleading and cryin, "Please Stop" he waltzed in banging the grocery bags on table and made an obvious sigh of disgust when he looked at me , Then he said "oh no Ruby Again!" I screamed STFU
GET AWAY FROM ME NOW, I am a crazy person during a hit, He claims I am mean, Um hello...geez I couldnt get away from him fast enough. He is now being ignorant, Period, he damn well knows what this is and how I get.
   This is now 7 weeks so I am praying remission is around corner, Does anyone else flip out like this to tohers around hwen hit, I explain get outta my way and leave me the F alone when hit, and for the most part I am but sometimes My husband follows me asking "what can I do , Telling me "please stop crying , Your scaring me". Umm I cant then I collapse on couch or where ever and Close my eyes because I am exhausted, and he wakes me.Asking "whats for dinner". I told him about my family here and he said aww thats cute, Cute? I am so upset at him right now 
|
|
IP Logged |
|
|
|
Jean
New Board Newbie
Gender:
Posts: 50
|
|
Re: 5 weeks now
« Reply #13 on: May 21st, 2008, 2:31pm » |
Quote Modify
|
Hey Ruby,
You are not alone in "flippin out" during a hit. I mostly cry and then try not to cry cause it hurts more then cry cause I can't stop crying. More than anything I WANT TO BE LEFT ALONE! I have hurt others feelings because of this. They get over it.
I know how frustrating it is to not have the support you need from your husband. Come here when you need to vent. Feel free to P M me as well. I am new to the board but I do know what you are going through. Hang in there.
jeannie
|
|
IP Logged |
|
|
|
debOUCH
New Board Veteran
..i think to myself, it's a wonderful world..
Gender:
Posts: 211
|
|
Re: 5 weeks now
« Reply #14 on: May 21st, 2008, 10:36pm » |
Quote Modify
|
glad 2 hear the pred is keeping that beast @ bay!!! my husband moved out so .............i dont have to deal with him saying the same stuff u r hearing!!! i know what u r going thru...............i am still in my cycle, 1st ever for 4 mths, tried tapering off my med( for the 3rd time!) (only elavil) just 2 days, and it is back....thus i am .back on again!!! weird tho, i love my wine, and it doesnt trigger now, but for 2.5 mths cudnt even smell it and i would be thrashing!!!.possibly i am chronic........who knows........i just do wat I WAS TAUGHT HERE............................TAKE THE HIT AND LIVE..................tho really hard at times......................i am sending lotsa hugs ur way.and wishes for a PF nite..
deb
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss