Yet Another Bulletin Board

Welcome, Guest. Please Login or Register.
Mar 29th, 2024, 8:30am

Home Home Help Help Search Search Members Members Member Map Member Map Login Login Register Register
Clusterheadaches.com Message Board « I feel like I found my long-lost family ;) HELLO »


   Clusterheadaches.com Message Board
   New Message Board Archives
   2006-2007 Getting to Know Ya Posts
(Moderator: DJ)
   I feel like I found my long-lost family ;) HELLO
« Previous topic | Next topic »
Pages: 1 2 3 4  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print
   Author  Topic: I feel like I found my long-lost family ;) HELLO  (Read 3915 times)
vietvet2tours
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Team MOOSE DROOL Stinky Stuff on a Hook Prostaff

   


Gender: male
Posts: 1499
Re: I feel like I
« Reply #50 on: Oct 16th, 2007, 12:09pm »
Quote Quote Modify Modify

Watch this video.If this is you then you might have cluster headaches.
http://www.youtube.com/watch?v=LAf_QFmTPkw
IP Logged

Kill em all let God sort em out
txbeck
New Board Junior
USA 
**





   
WWW

Gender: female
Posts: 55
Re: I feel like I found my long-lost family ;) HEL
« Reply #51 on: Oct 16th, 2007, 3:12pm »
Quote Quote Modify Modify

Mikella, Topamax has been my wonder drug so I am anxious to hear how it is working for you. Best of luck to you.  I cannot take beta blockers either and still have shadows, but not one headbanger since miracle worker Topamax entered my life!
 
Becky
IP Logged

Becky
Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I
« Reply #52 on: Oct 16th, 2007, 5:37pm »
Quote Quote Modify Modify

on Oct 16th, 2007, 12:09pm, vietvet2tours wrote:
Watch this video.If this is you then you might have cluster headaches.
http://www.youtube.com/watch?v=LAf_QFmTPkw

 
Can't explain how I feel seeing someone else like that.. is that you? I cried bc I feel their pain, that's me in male form. It is so disturbing to me that other people suffer like I do.. and there's many of us. If that is you, thank you for posting that video. It makes me feel more "normal".. I wish I could give you comfort..  
 
When my pain escalates, I feel like I'm losing my mind; no other way to put it. Often I feel ridiculous how I go on thrashing and crying, etc.. but it helps to know that I'm not alone. There's no other way to make it through that pain.
 
Anyways, I can't respond to many of you now, since I juuuuuuuuust started Topamax last night, but I will be sure to let you know how I am doing! I'm on 12.5 mg for 10 days then 25 for 10 days, etc.. so it will be a while. I am SO DESPERATE for relief. I am very very very scared that this won't work for me.. I'm trying not to get my hopes up, but I can't help but think about what it would be like to be pain-free. I don't know what it would feel like to not have pain, the thought of ANY of this makes me so anxious - the good and the bad. If this works, my whole life will be changed......... and that is HUGE. BBS, Love to all.  
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
Emily
New Board Old Timer
Wales 
****





   


Gender: female
Posts: 279
Re: I feel like I found my long-lost family ;) HEL
« Reply #53 on: Oct 16th, 2007, 5:49pm »
Quote Quote Modify Modify

It's good to hear you sounding a bit more positive Mikella. That's part of the battle with this. A positive attitude when the pain level is low is what keeps me (and I'm sure a lot of others) sane here. It's the only way that a noraml(ish) life can be lead.
 
Let us know how the Topomax works. It's always good to see if things work or not. I've stopped the indo now and am letting my body take a break and recover before my doc starts me on the next drug (hopefully before the next cycle kicks in!).  
 
Wishing you all the best!
 
Em
x
 
PS - I read the boards for weeks and weeks before posting because I had similar fears. Don't be afraid to share your experiences and feelings here. We're all learning from and helping one other. You're part of this support network now too.  hug
IP Logged

The greater the obstacle, the more glory in overcoming it.
- Moliere

Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I found my long-lost family ;) HEL
« Reply #54 on: Oct 16th, 2007, 8:36pm »
Quote Quote Modify Modify

Just a quick note for EMILY Smiley... Thank you, you've been so kind to me. Really, thanks.. When this whirlwind settles down a bit, I'll be able to take some more time and get to know people around here and reply properly. Anyways, The indo, I wasn't sure if it made me feel worse or better.. it did help a bit of my pain.. my neck and my head (a bit), but it killllllllllllled my stomach and just made me feel awful, I couldn't think straight, I seem like I'm drugged when I'm on it LOL I'll let you know how the good ol' SUPPOSITORIES go though HAHAHA It really is a better way to take it, I don't know why they even prescribe the indo pills anymore. You may want to ask your dr. or whoever about using the suppositories next time if you use it again. Do you think it helped you? It was so funny.. when my psyc. was trying to gingerly bring up the topic, he was like: "now, there is another option........................ it's something europeans have no problem with, but for some reason we north americans have a problem sticking things up our bums" HAHAHAHAHA It's funny bc he's a pretty serious man, and he said it seriously.  
 
Anyways, what are you going to try now, Emily? Tell me more about you! Your whole story with CH, etc.. and just things in general.  
 
About the positive attitude thing.... As you know, it is SO hard a lot of the time........... Very up and down; chronic pain sucks the life out of you, it is SO emotionally trying. I have clinical depression as well, so my brain doesn't function in a healthy way.. however, the antidepressants have made a HUGEhugehuge change in my life. The feeling of complete and utter DOOM has been lifted. But I don't think I'll ever be able to get the depression under control until I can decrease this pain. I know I'll always have to manage my depression, but I know it will hopefully be much EASIER to manage at some point in my life (providing that I reach a point where I am pain free.. or close to it). I will most-likely always be on antidepressants. I suffered from dysthymia before double depression (which is dysthmia + major depressive episodes)....... and I don't want to go back to living like that (dysthymia never goes away, you have it your whole life). It's the oddest thing to describe........ very situational for me, would depend a lot on the environments I was in.... I felt unbearably UNEASY in most environments.. I have never been able to sleep ANY place other than my own room, and the antidepressants have helped with that - I'm slowly learning to sleep at my boyfriends place after this long Sad Still working on it.. I had huge problems with dysthymia even when I was young, again, environments, etc. I always end up rambling..
 
My biggest fear is the thought of always living like this. I actually talked to Angie about that recently.. (so grateful to have met her).. and she has the same fear. I'm sure maybe even all of us do. The truth is, if I'm going to live like this my whole life, I don't want to live.... I CAN'T live like this my whole life, I don't have it in me. I know I can't think about that now, but it's always in the back of my mind. I will try drug after drug. .................It's just not fair. Why do you guys think we have to live like this? What good is there in it? Other than bringing us together, I suppose. I just can't be the person I WANT to be and AM when my state of life is reduced to this bc of the pain.. I'm a mad person. I feel very defeated bc of this. I wish I could just bear the pain and remain myself, but it is so impossible. It changes my personality. I could handle it, if I just had hits now and then............... but my pain is constant between hits. If I knew that once the hit was over, I would feel no pain, I would focus on that. But I don't have that to focus on.  
 
Anyways..............................
 
I'm not trying to sound like I feel bad for myself. Life is just the shits.. not fair. Fair isn't the word I guess. Life is just cruel in some ways. I wish none of us had to deal with this.  
 
I'm not that upset, just thinking and typing.  
 
BBS
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
CostaRicaKris
New Board Veteran
USA 
***



Currently training for AFC half Marathon

  CostaRicaKris  
Email

Gender: female
Posts: 179
Re: I feel like I
« Reply #55 on: Oct 17th, 2007, 12:58pm »
Quote Quote Modify Modify

on Oct 16th, 2007, 12:09pm, vietvet2tours wrote:
Watch this video.If this is you then you might have cluster headaches.
http://www.youtube.com/watch?v=LAf_QFmTPkw

 
I am balling my eyes out after watching that. It's so strange to
me how similar we all are in how we react to the pain; holding the side of the head, rocking back and forth, stomping feet on the ground - that' s me!!!
 
Mikella, I really hope the Topamax works, it's worked for many and seems to be working for me so far. I'm just having minor shadows. I am a bit concerned that it may take a long time to work because you are on a very low dose and it is being increased at a very slow rate. Maybe that's because of your heart condition??  But who knows, I never went to medical school Wink
 
~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
Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I found my long-lost family ;) HEL
« Reply #56 on: Oct 17th, 2007, 11:37pm »
Quote Quote Modify Modify

Thanks for the note, Kris. Smiley I really hope it works for me, too... AND I wish you the best of luck with it. Have you tried other drugs? Is this your first try? I hope it takes away your pain. I'm starting the topamax really slowly to try to avoid the side effects. I'm very curious to know when I may start to get some relief........... I have a feeling, not for a while Sad
 
 
Today was...... not good. I was hit repeatedly on my right side. Then tonight, a big long hit on my LEFT..... strange. My left is hurting so bad still.... it started around 7 p.m..... and quickly started to rage. It's 12:30 a.m. now, and the pain is bearable.. I slept when the pain started to decrease. I'm hoping that I'll be able to sleep tonight. I get nervous that I'll get hit. I'm not sure if the pain on my left is mostly the "after-effects" now, or if I'm not out of the woods yet.. God my eye feels like a massive bruise. I have a beat red long SPOT on the outer corner of my left eye.
 
When you guys get hit.... is the reddest part of your eye the OUTSIDE corner? Mine is.  
 
I had to call my boss and tell her I couldn't come in today... I did the work I had to do for today at home early in the day, and my mother drove it to the office for me.. I can't afford to not do my work, because I run half of the Kumon program here (I run the "Reading" (english) side of it for all the reading students (50 right now)... so if I don't get my work done, nothing is prepared for the students, and I can't get to class to work with them)... Anyways, I prepared all their files at home, and hoped that class went ok.. I couldn't go to my art class tonight either.  
 
Cry
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I found my long-lost family ;) HEL
« Reply #57 on: Oct 18th, 2007, 1:31am »
Quote Quote Modify Modify

I'm having piercing pain on my left, and I'm being hit on my right again now...................... it's 2:30 a.m. and I just want to go to sleep. Totally blocked up on my right. My neck is terrible, it's seizing up.
 
I wish someone was in the chat.  
 
Here comes the breakdown.
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
Wayne
New Board Old Timer
South_Africa 
****




RedBull Rules!!

   
Email

Gender: male
Posts: 299
Re: I feel like I found my long-lost family ;) HEL
« Reply #58 on: Oct 18th, 2007, 6:22am »
Quote Quote Modify Modify

Oh Damn Mikella, so sorry that you're walking such a rocky road at the moment, sucks!! Have you tried a Redbull yet?? I know I'm harping on it but it made such a difference to me and has to many others here. You really need something to take the edge off these things until the Topo has had a chance to work.
IP Logged

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
CostaRicaKris
New Board Veteran
USA 
***



Currently training for AFC half Marathon

  CostaRicaKris  
Email

Gender: female
Posts: 179
Re: I feel like I found my long-lost family ;) HEL
« Reply #59 on: Oct 18th, 2007, 8:17am »
Quote Quote Modify Modify

Mikella, Do you have O2?
 
I don't know what part of my eye is the reddest when I get hit. To be honest, I never looked. It just feels like the whole left part of my face is red, swollen and on fire.  
 
To answer your question, yes I tried a ton of differnt drugs before I was properly diagnosed. Everything from antibiotics "it's a sinus infection" to morphine "that should take care of the pain" of course as we all know here, none of that worked Wink
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
ski2k
New Board Old Timer
USA 
****






  skipolak  
WWW Email

Gender: male
Posts: 458
Re: I feel like I found my long-lost family ;) HEL
« Reply #60 on: Oct 18th, 2007, 9:44am »
Quote Quote Modify Modify

Hey there!
 
   Sorry to hear things have gotten so bad, but I have to say it too.... They WILL get better!
   Although Wayne seems to think he's harping on you about trying an energy drink, he's not. It is a VERY sound piece of advice!! It still stuns me how well and quickly something so simple can work!! Being in liquid form, the taurine and caffeine get into your system sooo much faster than the taurine pills!
   I've been eposidic for almost 20 years now. Like you, NOTHING seemed to help. I found this site a few years ago, and found out about O2. I gotta say, it has been a miracle!! With this new doc you're seeing, I'd highly recommend bugging him about trying it!! Remember... 15 lpm through a non-rebreather mask. Use it at the first sign of a hit coming for 15-25 minutes. That should help to knock it out. The best part(s) about using the  O2, is the speed in which it works, AND it has pretty much NO side effects. That means you can use it even with your heart problems!
   You've just GOT to try the energy drink trick, as well as the O2. I think you'll be pleasently suprised!
   I'm also curious as to what antidepressant you're on. I recently stopped taking one, and discovered that when I stopped taking it..... The migraines I was getting went away too! After thinking about it for a while, I realized the migraines I got started shortly after going on it! This may have nothing to do with your headaches, but it's worth considering.
   I hope you find your silver bullet soon, and please PLEASE try O2 and Red bull!
 
PF wishes to you!
Adam
 
Oh... And if nothing else works, check out the clusterbusters website. That's how I'm dealing with my current cycle (RC seeds), and they've been the best thing I've tried yet! Take care!
IP Logged

Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
https://www.iamshaman.net/affiliatewiz/aw.aspx?A=1022&Task=Click
sldrswyfe
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Member of O.U.C.H.

   
WWW

Gender: female
Posts: 1015
Re: I feel like I found my long-lost family ;) HEL
« Reply #61 on: Oct 18th, 2007, 9:57am »
Quote Quote Modify Modify

First, I want to say to the CH family "You are all the best"...this post touched me...to see you all helping...there.
 
Second..Im going to say it...Uh, Mikella, Are you taking any of this in??  Just as one of the family said, alot of caring, time and energy has been put out here.  If you read "General Posts", it's very rare to receive such lengthy answers and have a thread run this long.  
 
I apologize to any of the CH family I've offended...Im feeling protective. Sorry.
IP Logged

"Great spirits have always found violent
opposition from the mediocrities." -Einstein

"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot

"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
Wayne
New Board Old Timer
South_Africa 
****




RedBull Rules!!

   
Email

Gender: male
Posts: 299
Re: I feel like I found my long-lost family ;) HEL
« Reply #62 on: Oct 18th, 2007, 10:39am »
Quote Quote Modify Modify

on Oct 18th, 2007, 9:57am, sldrswyfe wrote:

I apologize to any of the CH family I've offended...Im feeling protective. Sorry.

 
Exactly what do you feel you have to apologise for??
IP Logged

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
sldrswyfe
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Member of O.U.C.H.

   
WWW

Gender: female
Posts: 1015
Re: I feel like I found my long-lost family ;) HEL
« Reply #63 on: Oct 18th, 2007, 10:43am »
Quote Quote Modify Modify

Wayne...
 
If I seemed like I was being insentive...it's just I feel protective, and watching all of you...has tears in my eyes...at the kindness and time.
 
IP Logged

"Great spirits have always found violent
opposition from the mediocrities." -Einstein

"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot

"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
Wayne
New Board Old Timer
South_Africa 
****




RedBull Rules!!

   
Email

Gender: male
Posts: 299
Re: I feel like I found my long-lost family ;) HEL
« Reply #64 on: Oct 18th, 2007, 10:54am »
Quote Quote Modify Modify

Please don't misunderstand me, I don't get why you think you're being insensitive or why you think you may have offended anyone with your comment.
IP Logged

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
sldrswyfe
CH.com Alumnus
New Board Hall of Famer
USA 
*****



Member of O.U.C.H.

   
WWW

Gender: female
Posts: 1015
Re: I feel like I found my long-lost family ;) HEL
« Reply #65 on: Oct 18th, 2007, 10:56am »
Quote Quote Modify Modify

check your PM's....
IP Logged

"Great spirits have always found violent
opposition from the mediocrities." -Einstein

"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot

"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
Wayne
New Board Old Timer
South_Africa 
****




RedBull Rules!!

   
Email

Gender: male
Posts: 299
Re: I feel like I found my long-lost family ;) HEL
« Reply #66 on: Oct 18th, 2007, 11:07am »
Quote Quote Modify Modify

on Oct 18th, 2007, 10:56am, sldrswyfe wrote:
check your PM's....

Check yours
IP Logged

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I found my long-lost family ;) HEL
« Reply #67 on: Oct 18th, 2007, 11:16am »
Quote Quote Modify Modify

sldrs - You have offended *me*.... I have never been so appreciative, and thankful....... I've never met such compassionate people so willing to help in any way they can. Have you read my posts? I've thanked people over and over...... Right now, I am so desperate to just get through the pain. I can't write back to everybody every time yet, and I've explained that. You should understand about the pain....... I've just started coming to this site, give be a break, please.. I don't understand what I've done to make you feel this way towards me. I hope you'll reconsider bc I'll be here for the long-haul.
 
 
Wayne, Kris, Ski.. again, thank you.. I wish there were more I could say. Just having people around that I know care and understand, helps so much. I've tried to be prescribed oxygen, with no luck.. I have another appointment today with an ENT (amazing guy, he got me started with all of this, figured out what it was..) and I will ask if he can prescribe me O2. If not, I will call my psychiatrist and see if he would call in a prescription. It took a little while to get over the harsh words that dr. said to me about how it was "drastic" and everything.. I thought maybe I didn't need it.. but you've all helped me get back on track and understand that I really do. As far as the redbull goes, I had been trying the taurine pills, but I'm going to go out and buy some redbull (or another brand equivalent with hopefully a high amount of taurine!)... the reason I've been apprehensive to try it, is because of my heart.. *I'm supposed to stay away from stimulants*.. I promise I am listening to you all, there are just so many other factors I have to keep in mind as well bc of my other health issues Sad That said, I AM going to buy some redbull.. and try it. Would half of a can help at all? If not, I will drink a whole one.. I just have to admit, it makes me a little worried about my heart. But it's ok, I promise to try it!
 
So.. just want to say, that I am taking in EVERY word you guys take the time to write me. You are what is keeping me going. I don't know what I did to deserve sldr's comment, but I hope that you all know how appreciative I really am... I try my best to convey that. As I said before, I'm just so DESPERATE right now.. I'm in constant pain, and I tend to rant. Also, with my ADD, it makes it hard to sit here for long periods of time and write to you all. But I do try.... I wish I had more to offer right now..
 
I'm not out of the woods yet.. once I am, I will give back in any way I can. I admire you all. This is just so overwhelming right now, I FINALLY know what is wrong with me after 10 years of suffering every day.. I feel like my head is spinning on my shoulders, all this new information....... all from people I don't know, and want to get to know.  
 
I don't know what to say, how to say it, where to go, what to do, LOL
 
Aaaaaaaanyways, the pain is more dull today. Had a hell of a day/night yesterday and my face shows it. But I'll be ok. You guys are getting me through it. I'll update after my appointment.  
 
Love to all, many PF wishes.  
 
Hugs,  
Kella
 
 
 
 
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
vietvet2tours
CH.com Alumnus
New Board Hall of Famer
USA 
*****




Team MOOSE DROOL Stinky Stuff on a Hook Prostaff

   


Gender: male
Posts: 1499
Re: I feel like I found my long-lost family ;) HEL
« Reply #68 on: Oct 18th, 2007, 3:23pm »
Quote Quote Modify Modify

on Oct 18th, 2007, 9:57am, sldrswyfe wrote:
First, I want to say to the CH family "You are all the best"...this post touched me...to see you all helping...there.
 
Second..Im going to say it...Uh, Mikella, Are you taking any of this in??  Just as one of the family said, alot of caring, time and energy has been put out here.  If you read "General Posts", it's very rare to receive such lengthy answers and have a thread run this long.  
 
I apologize to any of the CH family I've offended...Im feeling protective. Sorry.
 
 
 You offend me.
IP Logged

Kill em all let God sort em out
Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I found my long-lost family ;) HEL
« Reply #69 on: Oct 18th, 2007, 3:47pm »
Quote Quote Modify Modify

Chronic clusters it is.
 
 
My appointment went well!
 
He used a camera to look at my sinuses again, and sure enough.. Physical proof of my attack last night/today: My left sinus was congested, swollen and red. (Plus my eye, bloodshot, swollen, droopy)..
 
I was finally prescribed oxygen! I called the place and they're going to call me tomorrow and set up a time to come to my house. Can someone tell me what it's like when they first come to your house? Do they inspect your house or anything?? I swear you can tell when I'm going through really bad bouts of pain bc my room gets messy lol  Angry They'd say it was a fire hazard lol  
 
Anyways, all of these steps are certainly in the right direction.. it has given me a burst of hope. If I could reach out and hug you all, I would.  
 
 
 
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
txbeck
New Board Junior
USA 
**





   
WWW

Gender: female
Posts: 55
Re: I feel like I found my long-lost family ;) HEL
« Reply #70 on: Oct 18th, 2007, 4:36pm »
Quote Quote Modify Modify

Good luck with the O2 now Mikella!  Be sure they provide a  tank and a 10 to 15 lpm regulator with 100% ovygen.  That should be obvious, but my experience proved it is not.  My prescription was right but two different suppliers sent me concentrators instead of tanks!
 
You also have not mentioned melatonin yet.  Try it. I take 12 mg at bedtime.  It seems to work well with the Topamax.  I finally bough some Redbull, but am not even a coffee drinker so I won't use caffeine until I'm desperate, but CH = desperation, right?
 
PF wishes.
IP Logged

Becky
ski2k
New Board Old Timer
USA 
****






  skipolak  
WWW Email

Gender: male
Posts: 458
Re: I feel like I found my long-lost family ;) HEL
« Reply #71 on: Oct 18th, 2007, 5:08pm »
Quote Quote Modify Modify

  So glad to hear you got the O2!!! Don't worry about the home visit, they're just there to set up your tank or concentrator, show you how to use it, etc..
   If they give you a concentrator, you MUST INSIST they give you a tank or two (E-tank... that's the size of it) to go along with it!!! It's a MUST! The first time I tried O2, the supplier told me it wasn't practical to give me tanks, cuz I'd use one whole tank for each headache I had. That was NOT true! I found out later, that an E-tank will last for four or (sometimes) five headaches. You really don't want to feel like you're stuck at home since you can't bring your concentrator with you, so having even one E-tank is a MUST! Also, make sure they give you a non-rebreather mask. My first time, they tried giving me the nose tubes, and they just don't cut it! Use at the first sign of a hit, and should knock it out completely within 20 minutes (sometimes a little less time, sometimes a little more). A word of advice... If it does knock the HA out, stay on the O2 for about 5 minutes after it leaves! Some people (myself included) find if they stop too soon, the beast comes right back within 1/2 hour.
   I know you've probably done some reading about the O2, I just thought it might be good to give you a quick reminder of what you need before your appointment.
   Let us know how the energy drink works for you. Again... It doesn't need to be Red Bull, but make sure it has both Taurine and caffeine. That combo seems to be what makes it work for us. To use it, take it at the first sign of a bad hit. Drink it down as fast as you can. Since you have the heart issue, you can try doing half a can, but if things don't feel like they're improving soon (within 10 minutes or so), then I'd drink the rest. Some people have found a really good one-two punch is to slam the drink, then hit the O2. Might be worth a try if each one doesn't seem to help much on it's own...
   I'm just so happy you're finally getting some help! I'm soooo excited for you, and can't wait to read if the O2 and Red bull are working for you!
 
Best of luck!!!
Adam
IP Logged

Here's where I got my RC (Rivea Corymbosa)seeds: I am Shaman
https://www.iamshaman.net/affiliatewiz/aw.aspx?A=1022&Task=Click
Wayne
New Board Old Timer
South_Africa 
****




RedBull Rules!!

   
Email

Gender: male
Posts: 299
Re: I feel like I found my long-lost family ;) HEL
« Reply #72 on: Oct 18th, 2007, 7:17pm »
Quote Quote Modify Modify

Hi Mikella
 
A very very important part of living with ch is taking control of it. you will hear and read much advice, things that may or may not work for you, never the less it is ultimately you who has to look after you. few of us here are doctors and no one can force you to do something you are resistant to, but I will seriously urge you to open your mind and think where you are and explore every avenue to make that place as good a place as possible. Ranting here is fine, its what we do from time to time, but we also listen!
I wish you many, many PFDAN
Wayne
IP Logged

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
DennisM1045
New Board Hall of Famer
USA 
*****




One wave at a time!

  DennisM1045   DennisM1045
Email

Gender: male
Posts: 1639
Re: I feel like I found my long-lost family ;) HEL
« Reply #73 on: Oct 18th, 2007, 11:02pm »
Quote Quote Modify Modify

Hi Mikella,
 
I'm very happy to hear you are getting your O2!  I hope it works as well for you as it does for me.  Do you have the perscription with you?  Does it read 10-12lpm?  If so the regulator they'll give you will probably go to 15lpm.  If not then you need to work with the Dr to get the right perscription.
 
What size tanks are they delivering?  I keep an m-tank at home and have 3 e-tanks for travel and at work.  The m-tank is comes in two versions.  One is about four feet tall and the other is a bit shorter but fatter.  I keep mine is a space about 18" sware next to my dresser.  I also had them give me a long 50' hose so I could pace.  I'm a pacer and need a lot of hose Grin
 
Good luck tomorrow.  And don't worry about the O2 delivery guy noticing anything.  They don't care and are only there to deliver the O2 and get you set up.  Hopefully you'll get a good guy.  Don't let him leave without having him show you how to work the equipment.
 
The non-rebreather mask has a bag attached and two holes on either side of the mask.  Both of these holes need to have flexible discs called valves on them.  When you breath in and completely colapse the bag no air should be flowing in through these holes.  It'll take some practice.  Read through the O2 supplemental guide on the OUCH-US site.  It'll really help you with the mechanics of using it properly and is well worth the time it takes to read.
 
Good luck hon and let us know how it goes tomorrow.
 
-Dennis-
 
 
IP Logged

Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
Mikella
New Board Newbie
Canada 
*




I love YaBB 1G - SP1!

   


Gender: female
Posts: 50
Re: I feel like I found my long-lost family ;) HEL
« Reply #74 on: Oct 18th, 2007, 11:13pm »
Quote Quote Modify Modify

Wayne, my mind is as open as it can get.
 
 
Thanks again for the great advice!!! I'm going to reply tomorrow, it's getting late here.. but had to pop in and say how comforting it is to come here and see your replies.  
 
Quick update, I tried redbull this evening. I tried to drink it as fast as I could. I didn't have much luck with it, but I will try it again. I think the pain may have been too bad for it to help much.. but definitely worth another try, maybe with better timing. Is that usually the case? That it doesn't help much unless you catch it in time?
 
I will hopefully be set up with oxygen tomorrow.. fingers crossed.  
 
Anyways, will reply to you guys tomorrow. Thanks again. I hope you all are doing well.. Talk soon <3<3<3!!
IP Logged

"Know how sublime a thing it is.. to suffer and be strong" HWL
Pages: 1 2 3 4  Reply Reply Notify of replies Notify of replies Send Topic Send Topic Print Print

« Previous topic | Next topic »


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.


©1998-2010 Web Vision Enterprises All rights reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

test rss