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Topic: Hi, and so much for wishful thinking (Read 321 times) |
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Spoticus
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Hi, and so much for wishful thinking
« on: Sep 23rd, 2006, 4:44pm » |
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Hi my name is James or Spot usually, I am 23 and am from near the Gold Coast on the east coast of Australia.
I will start with just saying, like probably every other person that finds this site, that within 5 minutes of reading I felt like crying for joy. For better or worse though I am not a crying person.
I first suffered from CH Dec 26th 2003, I was just short of 21 at the time. I was home alone as I had to work while all my family were away. I was hit so hard by it, and had absolutely no idea what it was, that I was awake for days on end until my family got home and had the common sense I couldn't summon to get me to the ER. They weren't much use but thankfully the next day my local GP diagnosed me CH. He wasn't a lot of help with actual treatment but did prescribe some non prescription meds which worked occasionally, and promised me that they would likely go away in a week or two. They persisted basically night and day for a full 10 weeks and I am sure I spent most of that time in the 8-10 range of the Kip scale. Great scale btw.
After they went away it did take me months to get my life back on track. After the initial fear of the pain returning passed I must say that for the remainder of 2004 I enjoyed life more than ever, and was more considerate of others, and grateful for everything I have than I had ever been been previously.
I guess I began to view those months as a one off recently, and anyway about 12:30am tonight I felt a bit off. I didn't recognise the feeling, or maybe I denied it, but I could feel a strange feeling coming on. By 1am I knew for sure what it was but it was too late.
I took some strong headache stuff, to no avail, I hit the sack hoping to get to sleep but it made it just made it worse. I watched TV for half and hour to take my mind of it and that helped. Then I tried to sleep again and it really picked up, the spreading of it across the side of my face, the piercing behind my eye, the ache in my jaw as I realise I have been clenching and unclenching my jaw for hours, the pacing the need to sit down, the need to stand up, the need to lie down, the need to roll over, the need to pace the endless cycle of that  I went on MSN trying to find anyone to harass to try divert my attention outwards not inwards. Predictably everyone had to be out or in bed early tonight  I tried and failed again to sleep with the pain hitting the point that I fear, where I realise that it is more than I can stand over long periods of time. The cat is getting annoyed by me so I go to put it outside, for whatever reason it decides now is a good time to sink a claw into either of my shoulder as deep as they will go. He never does that but I honestly wasn't mad, it diverted the pain away from my head for a good minute or two while I checked to make sure it wasnt going to bleed.
I tried and failed to sleep yet again, I started to curl up on a seat and rock Then I dont know how long passed and I was wandering again this time back to the PC. I went looking at the same google search I always look at when in this pain, just type in the symptoms and find something to pass the time.
Instead I found you guys at this website and I feel so happy that I just can't describe it. Every other person's experience I have had read in my very brief time here has rung true to some extent. Certainly more true than anyone I know in real life's sympathy.
It is now 6:40am probably near 6 hours since it has restarted and I guess I wishful thinking doesn't work. I have had 30 odd months of respite, certainly much more than it seems some of you get for which I am thankful. And hopefully with this website I will be able to find something that will make this time around easier. Apologies for the rant like nature of this hello post but I am not really thinking straight atm.
PS: This post is far more self pitying than I have ever been in my life I think but I am sure you here will understand that I really just had to get that out.
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Dape
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Re: Hi, and so much for wishful thinking
« Reply #1 on: Sep 23rd, 2006, 4:56pm » |
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Hi Spot,
Welcome to CH.COM a place of unrivaled information and support, but sorry you have to be here.
You have struck lucky by the way as there is a new member here who is a GP in Australia She goes by the name BB and i am sure she is going to be of great help to you.
No need to appologise for ranting as we have all done it at 1 time or another and i personaly beleive that it helps releive some of the presure that we feel.
Have a good read and click on some of the links regarding the different treatments and helpfull tips.
 Dape
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Dape
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Re: Hi, and so much for wishful thinking
« Reply #2 on: Sep 23rd, 2006, 5:00pm » |
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Just to add that BB is a supporter to her husband DH.
Dape
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Spoticus
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Re: Hi, and so much for wishful thinking
« Reply #3 on: Sep 23rd, 2006, 5:48pm » |
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One quick question the first time around they were on the left side, this one is on the right side. And my upper and lower lip (right side only) feel slightly numb with a bit of a tingling/burning sensation, I dont recall this happening last time. Are these pretty standard differences between cycles?
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| « Last Edit: Sep 23rd, 2006, 5:49pm by Spoticus » |
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Dape
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Re: Hi, and so much for wishful thinking
« Reply #4 on: Sep 23rd, 2006, 6:11pm » |
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on Sep 23rd, 2006, 5:48pm, Spoticus wrote:| One quick question the first time around they were on the left side, this one is on the right side. And my upper and lower lip (right side only) feel slightly numb with a bit of a tingling/burning sensation, I dont recall this happening last time. Are these pretty standard differences between cycles? |
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Hi Spot,
This condition is weird in the fact that it can not only change from cycle to cycle but also can change between hits.
I have had the beast change sides on me when the hits were only a few hours apart but have also had it change side during a hit.
Some times the entire hit side of my face feels numb other times nothing, so all i can tell you is that we are all different and the beast affects us all differently at times.
dape
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Spoticus
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Re: Hi, and so much for wishful thinking
« Reply #5 on: Sep 23rd, 2006, 6:13pm » |
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thanks for the responses davyp, time to go get some breakfast and prepare for a tired day 
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Dape
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Re: Hi, and so much for wishful thinking
« Reply #6 on: Sep 23rd, 2006, 6:21pm » |
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No problem Spot.
Hope you have a PF day.
Dape
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Yorky
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Re: Hi, and so much for wishful thinking
« Reply #7 on: Sep 23rd, 2006, 6:35pm » |
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I will start with just saying, like probably every other person that finds this site, that within 5 minutes of reading I felt like crying for joy. For better or worse though I am not a crying person.
me too spot, i personally bawled my eayballs out(now im a bloke) but crying for joy.....the only joy i have out of being diagnosed with ch is.....mmmmm...ch.com.
in my eye's, the easy way to learn all and everything...and everyone on here are massive, in their help and directions.good luck buddy.
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today is a gift.....thats why it is called the
present.
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Richr8
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Re: Hi, and so much for wishful thinking
« Reply #8 on: Sep 23rd, 2006, 8:39pm » |
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Glad you found us mate! I agree, finding this site is the best thing that has happened to me since I started suffering 15 years ago. Hang around long enough and you'lll learn a few things that will make it an easier go. Even if you don't, just having folks around that understand is a great help in hanging on to your sanity.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Barry_T_Coles
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Re: Hi, and so much for wishful thinking
« Reply #9 on: Sep 23rd, 2006, 10:16pm » |
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Hi Spot
Welcome, sad you had to find us but you are in good company.
There’s a few of us Ozzies here spread around the country side, I’m in Karratha in the NW of WA.
Best advice I can give you is to get a referral to a Nuro where you can get a MRI done to check that there is no other under laying problems.
See your Doc & try to get access to medical oxygen, it works a treat for a lot of us, Red Bull slammed down as quick as you can is another abortive for the lower hits
Have a look onto the medication, treatment & therapies area and print of every thing you think is relevant and take that to your Doc & the Nuro when you can get an appointment as most GP’s aren’t familiar with treating the condition.
Here’s a link to Mr. Happy’s web http://mushys.com/kiwi
where there’s a piece stored that I wrote just after I found out how to get hold of the o2 in Oz, but your Doc should be able to refer you to BOC Gases Oxycare which in Queensland is located at 1688 Ipswich Road Rocklea 4160 or by phone on 1800 050 999.
Feel free to PM me any time you want, I am going bush for all of next week but will be back on the weekend.
Wishing you some PF time
Kind Regards
Barry
This is what you will get in the Oxycare kit.
You will need a non rebreather mask, you may be able to get one if your Doc gives you a note for the ER at your nearest hospital, that’s where I got mine, and you will note that there is a granular device in the kit it’s not very effective but will get you through until you can get the other.
Rental cost is around $ Aust 360 for the year you will have to pay that up front but as soon as you no longer require it simply return the kit and they will reimburse the remaining dollars or see if you can get it on a monthly rental.
C size bottle varies from state to state but I pay $45 and it will last me about a week, I have more info about Oxycare on my PC at work & will forward to you Monday before I take off.
Cheers
Barry
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| « Last Edit: Sep 23rd, 2006, 11:48pm by Barry_T_Coles » |
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
http://mushys.com/kiwi
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Charlotte
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Re: Hi, and so much for wishful thinking
« Reply #10 on: Sep 24th, 2006, 1:23am » |
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James, if I did this right, it is a link to the ouch site which has a picture of the trigiminal nerve which will explain how all those spots that go numb &/or tingle are related to the headache. At least, it did for me. I haven't found anything yet as a visual to explain the vascular component.
http://www.ouch-us.org/index.shtml
Sincerely, Charlotte
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Callico
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Re: Hi, and so much for wishful thinking
« Reply #11 on: Sep 25th, 2006, 9:09pm » |
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Welcome home, but wish we could kick you out of the family! 
You did not rant or indulge in selfpity. Rather, you did a good job of describing your condition. It makes it a whole lot easier to respond.
As to changing sides, it is not common, but by no means is it unheard of. You are just a minority of a minority of the human population! Didn't you need to hear that? Before I went chronic I used to change sides after every second series of attacks.
As for the tingling sensation after the HA is gone, again, it is not common, but happens. Quite often after an high K hit the right side of my face will be numb and often my eye, cheek, and lip will sag. Makes one look like a charachter on a cheap horror movie.   Makes it real fun to try to kiss the wife goodnight!
Read as much of the info on the site as you can absorbe. GL finding a good Dr. You may have to teach him, so take as much info with you as you can and hope you get one that cares enough to learn rather than one that has a God complex and won't listen to you.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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BB
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Re: Hi, and so much for wishful thinking
« Reply #12 on: Sep 25th, 2006, 10:54pm » |
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Hi Spot,
I am sorry I found your post late, I have been working putting in 12 hrs shift in the last few days.
I am a GP in Sydney and my DH is a CH, recently diagnosed although he had previous cycles 6 and 3 years ago.
I am going to PM you with my details. You can ring me anytime at home or at work. I can ring and talk to your GP in the Coast and if you can travel to Sydney I strongly recommend you go see Prof Spira at Prince of Wales Hospital, he is the top CH specialist in Australia.
Regarding oxygen, you can ring BOC, ask for Oxycare, the number is 1800 050 999, you can hire the oxygen tank, the biggest one available is a size E, and if your GP wont write you a script for it I may be able to , plus you can order a non rebreather mask by ringing Air Liquid Healthcare Ph : 02 9364 7474 and order a couple, they cost $7 each.
I will talk to you more if you email or call me later.
Take care and painfree wishes to you.
Annette
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| « Last Edit: Sep 25th, 2006, 10:58pm by BB » |
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jon019
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Re: Hi, and so much for wishful thinking
« Reply #13 on: Sep 25th, 2006, 11:24pm » |
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on Sep 25th, 2006, 10:54pm, BB wrote:Hi Spot,
I am sorry I found your post late, I have been working putting in 12 hrs shift in the last few days.
I am a GP in Sydney and my DH is a CH, recently diagnosed although he had previous cycles 6 and 3 years ago.
I am going to PM you with my details. You can ring me anytime at home or at work. I can ring and talk to your GP in the Coast and if you can travel to Sydney I strongly recommend you go see Prof Spira at Prince of Wales Hospital, he is the top CH specialist in Australia.
Regarding oxygen, you can ring BOC, ask for Oxycare, the number is 1800 050 999, you can hire the oxygen tank, the biggest one available is a size E, and if your GP wont write you a script for it I may be able to , plus you can order a non rebreather mask by ringing Air Liquid Healthcare Ph : 02 9364 7474 and order a couple, they cost $7 each.
I will talk to you more if you email or call me later.
Take care and painfree wishes to you.
Annette |
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Awesome, Annette. Seeing this makes ME feel better.
And Spot, THIS is why you're here, this is why we're ALL here.
BTW, the first time I logged in I DID cry. It's OK man.
Joy, relief, affirmation that I wasn't some freak, a whole range of emotions. I still tear up sometimes when I see
someones joyous discovery, or a well deserved long coming PF time, or sadly, a frustrating endless quest.
Welcome, climb on board, there aint no bozos on this bus (well, maybe a couple).
Best
Jon
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| « Last Edit: Sep 25th, 2006, 11:37pm by jon019 » |
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Spoticus
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Re: Hi, and so much for wishful thinking
« Reply #14 on: Sep 26th, 2006, 7:27am » |
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Thanks again for the replies guys (and gals). I haven't been too bad off the last few nights, certainly no worse than a kip7 at night or 5 during the day. As for the crying, I don't try to not cry I just don't seem to any more. My tear ducts certainly work though as in my first cycle I would endlessly turn my pillow over as it got wet from my left eye running for hours on end
My doctor is of the kind variety  but I haven't had a chance to see him again yet.
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prcole18
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Re: Hi, and so much for wishful thinking
« Reply #15 on: Sep 26th, 2006, 11:47am » |
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Hi Spot, welcome mate, although sorry you had to find us.
I too practically cried my eyes out when I found this site.
Hope you get pain free soon mate & dont be frightened to ask any questions whatsoever.
Good luck to ya.
Paul
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Sandy_C
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Re: Hi, and so much for wishful thinking
« Reply #16 on: Sep 26th, 2006, 5:46pm » |
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Welcome Spot!
We all cried when we found this site. It's our family, and it is now your family.
You've already found BB, who is a wonderful Ch supporter, and a Doc, to boot!.
Ask any question you need to of any of us. Someone is always here, and we're all here to support each other.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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