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New Very Scared Person.... (Read 18821 times)
darknight
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Re: New Very Scared Person....
Reply #75 - Nov 6th, 2008 at 10:32am
 
id say take what you can until you get some 02!
Some things may make a slight difference so wait till after ur appointment!!!

take care Scott
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LeLimey
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Re: New Very Scared Person....
Reply #76 - Nov 6th, 2008 at 12:16pm
 
Scott sometimes over the counter painkillers like ibuprofen can help with shadows. I find caffeine, be it strong coffee or red bull help too. I detest the taste of red bull but I love how it helps.

You should get two envelopes from me tomorrow or the next day at the latest just so you know.

I've got your pm. I will make sure you have all the info you need for next thursday. If you would like me to come to see the neuro with you just say. I will come down if you want me to. (Pssst... someone tell him I only sacrifice newbie clusterheads on the 2nd thursday of each month 'k?!)

Hang in there, we're with you all the way

Helen

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Scott Lawrence
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Re: New Very Scared Person....
Reply #77 - Nov 6th, 2008 at 12:24pm
 
The angel that is LeLimey....

Thanks you so much for your offer, I may well take you up on it, I shall let you know asap...only if you promise not to hurt me.....lol

I'm fully stocked on Red Bull and Coffee, had another hit earlier, once again the Imigran did the job, I made it about 8 mins, within 10 mins I was back to normal again....
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
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thebbz
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Re: New Very Scared Person....
Reply #78 - Nov 6th, 2008 at 6:35pm
 
Quote:
The angel that is LeLimey....
Smiley

I told ya you would be glad you did.. Smiley

Way to go Scott. Your a demon killer now.
all the best
the bb
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ClusterChuck
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Re: New Very Scared Person....
Reply #79 - Nov 6th, 2008 at 7:44pm
 
Scott Lawrence wrote on Nov 6th, 2008 at 12:24pm:
...only if you promise not to hurt me.....


Be careful of what you ask for ...

Besides, if she is in the right mood, when she hurts you, she hurts SO good!  Those thigh high boots and 5" heels, with the leather corset, and floggers ...

<sigh>

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LeLimey
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Re: New Very Scared Person....
Reply #80 - Nov 7th, 2008 at 5:29am
 
ClusterChuck wrote on Nov 6th, 2008 at 7:44pm:
[quote author=4E7E72696942517C6A6F78737E781D0 link=1225715041/77#77 date=1225992278
 Those thigh high boots and 5" heels, with the leather corset, and floggers ...



Damnit Chuck if I find you've been raiding my wardrobe again I'm going to tie you up and make you watch Jerry Springer re runs until 2015.. alternated with highlights from Senate sessions on dull days..

Be afraid...!

She-who-must-be-obeyed



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darknight
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Re: New Very Scared Person....
Reply #81 - Nov 7th, 2008 at 7:08am
 
Damn i knew helen was a minx but damn!!!

if you find a strange fella at ur door asking to be hurt dont be alarmed!!! lol!!!! Wink
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RichardN
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Re: New Very Scared Person....
Reply #82 - Nov 7th, 2008 at 7:41am
 
Hi Scott

  Sorry to hear you've had such a rotten time with your "doctors" . . . and very glad you've got Helen backing you up.  It won't be long before she helps you get our beast under control . . . and you can get your 02 . . . a real miracle for those of us it works for (70%+).

  I'm a "head trauma" CH'er.  My attacks started after I nailed my noggin 1/01.  By the time my wife found this site for me (2/02), was having 6-8 attacks per day, sometimes 3-5 per night, most Kip 5-9, 20-45 min. and the occasional 1 1/2 - 2 hr horror . . . I was a basket-case and 13 months of mis-diagnosis, "normal" tests, MRI, CAT scans and non-working meds had me in a bad mental state.  As you already are aware, CH pain is so intense that you KNOW it must be life-threatening (tumor, impending stroke, etc.) . . . and this is complicated by the limited number of docs familiar with this beast of ours.

  After coming here (and shedding tears at the realization I was not alone), getting (and copying) the info to take to my doc . . . I finally was able to get some control over the beast.  For me, it was Verapamil and 02 that did the trick and that first PF day (in over a year) was WONDERFUL.

  I was a fairly heavy drinker, but didn't associate the headaches with alcohol. . .  quit 2/02.  Exhaust fumes and certain chemicals will also trigger an attack for me.

  I quit the Verapamil four years ago, and now rely on the water treatment (see "water X 3" . . . link on left) . . . it is NOT easy to do) and 02.  I keep 12 "E" tanks and have two regulators, one for the house and one I keep in my vehicle.  The key to 02 is to use at the first sign of attack . . . kill the bastard at the first sign of attack and save the Imigran for the hits the 02 doesn't work for (it takes a little practice, the correct flo-rate and mask).

  The best news is that you have Helen on your side and I pity (but not much) your idiot docs when she gets ahold of them.

  So glad you found the site . . . you WILL have more relief soon.

     Be Safe,   PFDANs

      Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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LeLimey
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Re: New Very Scared Person....
Reply #83 - Nov 12th, 2008 at 2:29pm
 
Good luck tomorrow Scott - remember, you've got more back up than your neuro has LOL

Helen
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Scott Lawrence
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Re: New Very Scared Person....
Reply #84 - Nov 12th, 2008 at 2:36pm
 
Thanks Helen,

It's all printed off and ready to hand over....

Should I get him to fill in the HOOF form straight away?
I'm guessing that I should, but I don't know how to react is he comes out with 'I'll do it later' or something.....

Scott
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
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LeLimey
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Re: New Very Scared Person....
Reply #85 - Nov 12th, 2008 at 2:52pm
 
No do it then!! Straight away - superglue the pen to his hand Scott!!!

don't forget the important stuff, tick the box for ambulatory oxygen so you can have small as well as large cylinders and also to write cluster headaches in the comments box!
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Scott Lawrence
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Re: New Very Scared Person....
Reply #86 - Nov 12th, 2008 at 3:00pm
 
All taken down....

Thanks once again!
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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Scott Lawrence
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Re: New Very Scared Person....
Reply #87 - Nov 14th, 2008 at 6:26am
 
Just to let you guys know....

My Neuro has sorted out the O2 via my GP, he was very good and listened.....which make a change for a doctor of mine.....

All being well should have it by Tuesday, so fingers crossed should be able to get back to work some time next week......

Never before have I been so excited/willing/craving to go back to  work.....I must need my head checked..... Grin

Heres to PF time for everyone!!!!!
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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Re: New Very Scared Person....
Reply #88 - Nov 14th, 2008 at 8:18am
 
good to hear your news scott, like you I had a result at the docs today aswell regarding o2. He filled out the form there and then and it should be with me on monday/tuesday. signed me off for another week though and have 2 go back next friday for lithium blood test result's!!!

The beast got me  good this morning k9 for 2 hrs ...it was hell...still at least the doc got to see the after affects of it.

pfd's my friends
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Scott Lawrence
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Re: New Very Scared Person....
Reply #89 - Nov 14th, 2008 at 8:54am
 
Dan, we must be leading mirrored lives! I took a massive hit at about 11 this morning, I had mates round as well.....they hadn't seen me take a hit before, they wanted to call an ambulance and everything!! Grin
It was a strange one, literally came out of nowhere.....luckily once again the Imitrex did the job, ten minutes later I was clear.....
Does the lithium work?
The Neuro has put me on Topiramate for a month to see how I get on with them....hopefully they'll do something...
Fingers crossed!!!....
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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LeLimey
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Re: New Very Scared Person....
Reply #90 - Nov 14th, 2008 at 9:59am
 
Dan and Scott - I have a question for you both... lithium and topiramate. Have either of your doctors suggested verapamil first?

Just wondering!! Bear with me please, I have a reason for asking.

Thanks Helen
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Scott Lawrence
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Re: New Very Scared Person....
Reply #91 - Nov 14th, 2008 at 1:39pm
 
I tried it when I was first diagnosed for a month, GP gave me 320mg a day I think....this was before the Neuro got involved
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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Cathi_Pierce
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Re: New Very Scared Person....
Reply #92 - Nov 14th, 2008 at 2:45pm
 
Scott,
About the  Verapamil.........How long did you use it? It takes some time to load into your system, and it has it's own "little perks"  Roll Eyes.........also, did your Dr suggest titrating..........320 is possibly not enough for you.......and the daily delivery of the 320 dosage......in otherwords, the Vera might work, if it 's tweaked a

bit!
Sometimes, the Vera is used in conjunction with the Lith, but Verapamil is a first-line as a rule.
Glad to hear you got  your script for 02. I hope it works well for you as it has for so many here!
PF wishes to you,
Cathi
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mrs mac
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Re: New Very Scared Person....
Reply #93 - Nov 23rd, 2008 at 8:20pm
 
hi Scott sorry to hear you have CH, but glad you seem to be on the right track now!!!

You mentioned that you have tried Verapamil, do you know if it was the slow release or modified release version you were on!!

i do have good reasons for asking this.

Also OUCH UK has been mentioned, and i can understand your reasons for not wanting to join, but it costs nothing to phone their helpline, all you need to do is leave your name, a message and a contact no (preferrably landline) and someone will call you back!!

i know you have had some good advice and support from Helen (my adopted big sis), but if you feel the need for some extra support please don't hesitate to phone them the number is

01646 651 979

the helpliners are all sufferers or supporters and are there to help in any way they can

good luck and i hope you get things under control soon

Sandra xx
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Re: New Very Scared Person....
Reply #94 - Nov 25th, 2008 at 10:15pm
 
What a story, Scott. This thing brings out the best/worst in clusterheads.....It is a horror. I wanted to contribute a technique that I used for so long. The price is right anyway:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      
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Re: New Very Scared Person....
Reply #95 - Nov 25th, 2008 at 11:29pm
 
Scott, looks like you have the CH army firmly behind you.  You're in excellent hands here.

Do you have a wife/girlfriend/boyfriend/significant other to help you out?

I'm a supporter of 17 years and it breaks my heart to think of you going through this alone.  I remember when we went through this nightmare before getting O2 on demand and the proper preventatives.

My husband was episodic for years and then went chronic for 2 eighteen month periods.  Currently he is out of cycle (and aren't we just THRILLED with that??!!). DH is currently on hiatus from CH.com, and he swears by Lithium.  He was up to 1200mg a day and is currently down to 900mg a day.  It really evens him out and we notice no side-effects other than a mild lethargy (and who knows, that may just be that's he's approaching 50!??).  He also has O2 available all the time as an abortive.  We have an M tank in the living room at all times (and currently decorated for the Holidays).

 I hope you can get back to relative normal in your life.  We're here for you in more ways than you know.  PM me if you need anymore info about lithium and I'll put you in touch with my DH, Brew.

Best of luck.
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Scott Lawrence
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Re: New Very Scared Person....
Reply #96 - Nov 30th, 2008 at 2:12pm
 
Hello all,

Sorry it's been a while.....Wow, where do I start?

Mrs Mac/Cathi Pierce - I can't remember what type of Verapamil I was on.....sorry!

Charlie - I have printed out your instructions, I'll be sure to give it a go, anything that may help is worth trying......but read on first.....

Mosaicwench - I am single, I honestly don't think I would have been great company for a lady for the last few months.....unless she was into watching men writhing around on the bathroom floor in tears.....

However.....I have been painfree for 6 days!!!! woohoo!!!! I started taking Topamax at 25mg daily, about 7/10 days before hand, but I noticed a change in the hits a couple of days before that. Had really bad side effects for the first week, not so much the memory loss that everyone told me about but my hands REALLY hurt, the cramps and pins and needles were awful but stopped as abruptly as they started. 5 days ago I doubled my dosage to 50mg daily. Still feeling good. I'm going to into work tomorrow  Smiley and maybe mosaicwench, go out at the weekend and see if I can't meet someone  Wink lol
Damn it feels good to feel 'normal' again....

So that's why you guys haven't heard from me, I've had so much to do!

Just a random question, does anyone suffer weight loss when they are in a cluster period?
I have lost about 2.5 stone, that's around 35 pound to those the other side of the pond, Neuro says it's probably just got I felt so crap I didn't eat that much, kinda makes me think though what will happen when (if?) the next bout comes.....if I lose this much again I'll turn transparent.....

Wishing you all the very best and painfree times!!!!

x
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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RichardN
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Re: New Very Scared Person....
Reply #97 - Nov 30th, 2008 at 4:20pm
 
Scott,

  Did you get your 02?  Tried it yet?

   Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Scott Lawrence
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Re: New Very Scared Person....
Reply #98 - Dec 8th, 2008 at 2:12pm
 
Just an update.

Been diagnosed with depression? had a few good days, followed by what can only be described as sheer hell, I swear if I had a gun.

O2 eventually turned up today, yes today, 08/12/08, and guess what, turned up all wrong, wrong mask, wrong regulator, and the tiniest cannister I have ever seen in my life, I laughed when the guy turned up, then cried, then told him to fuck off with all the gear.

I'm not sure if you guys are brave or stupid, don't get me wrong, I'm not having a go at you, I just don't know if I want to live with this shit for the rest of my life
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“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”
Scott Lawrence 652942399  
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thebbz
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Re: New Very Scared Person....
Reply #99 - Dec 8th, 2008 at 2:19pm
 
Depression is part of it Scott. I have to live with this shit, it is a part of me. I dont want it but I have it. I hate this condition. You will get the 02 straightened out. You have to keep eating on them like eating an elephant......one bite at a time. You have no choice but to fight.
Call the neuro, someone is not understanding the 02 therapy. That is not uncommon. High flow 02 for ch is uncommon. Makes sense that people dont understand. Keep after them.
all the best
the bb
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