Author |
Topic: Newcomer Saying 'Hi' (with a little ramble) (Read 813 times) |
|
LovinItAll
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 13
|
 |
Newcomer Saying 'Hi' (with a little ramble)
« on: Jan 26th, 2008, 9:15am » |
 Quote  Modify
|
Hi All!
I just found this site and the wide array of info provided, so I thought I'd register, tell my story, things I've tried to help my CHs (nothing new, just 'things'), etc. Here goes:
A little back story.....I was in an accident as a teenager and broke my neck (among other things), and at 34, I had a routine procedure go south and ended up with a perforated bowel. I was in the hospital for 3 days before they operated, and I thought I knew that real pain was....oh, how wrong I was!
My wife is a long-time migraine sufferer. For years I have felt so bad when she had an attack (they can last for days), as I never experienced headaches of any kind -- ever. The vasos have been a Godsend for her, but still she can get in pretty bad shape. Now on to my story.....
In March of '07, I awoke with an unbearable headache. For the next 10 days or so, every time I went to sleep, I awoke with these blistering pains behind my right eye -- my eye would water profusely, my nose would run, and I would just clutch my head and rock back and forth. They didn't last long (< than an hour), so I just 'manned up' and dealt with it. After 10 days, they went away, so I thought I had contracted a virus or something.
In June, same thing. This time it lasted about 2 weeks. For the first week, I refused to take anything other than Advil and Tylenol, but I finally broke and took a 5mg Maxalt from my wife. I have borderline BP, so I was pretty nervous taking the vaso, but take it I did -- it was either that or find a guillotine. I wasn't sure the Maxalt was actually working, but it was something.
During a routine office visit, I mentioned the two events to my doc. I'm already taking pain meds for my neck and back, and I had tried my breakthrough medication to stop the pain in the previous episodes, but by the time they started to work, the headaches were gone.
Doc was concerned because I was getting these headaches for no apparent reason, so she instructed me to contact her if they reared their ugly head again. October comes and Bang!, another episode. This episode lasted ~ two weeks.
Off I went to the MRI machine, nothing abnormal, so I'm relieved that I don't have something terminal...at least I hope not.
Nothing again until 12/28, but that day was really 'special'. I awoke with nothing short of suicidal pain, and I was sure I was stroking. By the time I decided to go to the hospital (15 minutes), Poof!, it vanished. Ah, but that was to be but the beginning.....
Over the next 16 days, I had 26 headaches (I know many of you have it much worse..I'm just sayin'). I was one miserable, no sleeping, cranky, impossible to live with S.O.B. Man, I was drinking ice water 2 liters at a time, packing my head in ice, eating Maxalt like candy -- ANYTHING I could think of...yes, the guns got locked in the safe ---- really.
Another doc friend gave me a pred. pack. I began taking it 13 days into the episode, and the HA's became less frequent, but I wasn't sure if it was from the pred or because I was nearing the end of my cycle. Of all the headaches I've had, exactly one came on while I was awake. It was a bad one, and when my BP hit 200/120, I hit the ER. By the time they took my info and got me into triage (about an hour after onset), the nasty bugger went away...just like that.
My primary care gave me another type of faster-acting breakthrough med, and off I went to the neurologist. I'm now armed with Imitrex injections, a big ol' O2 tank, but I'm out of cycle (pray, pray), so I haven't tried either yet. Oh, ye great spirits above, please bless me and hold these beasts off for awhile.....
My wife tries to relate her migraines to my clusters, and all I can say to her is, "If you're feeling what I'm feeling, and if you can lay in the bed for hours (or days) with that kind of pain, you are waaaaaay tougher than I am." I know she suffers, and I'm right there to help, but for her it's a dark room, no sound, ice packs, and a puke bucket nearby. She just can't understand why I don't turn off the lights and lay down. I do not experience photo- or phonophobia, and laying still is the LAST thing I want to do. Thank goodness I have docs that 'get it'.
Again, I know that there are people who are chronic (and even episodic) that suffer way more than I even care to think about, and my heart and soul go out to each and every one of them.
Anyway, I just wanted to vent a little...not asking for any sympathy here. I don't think I have anything new to add that may help anyone, but it was really nice to find a little spot that made me feel like I wasn't alone. To the mods and operators of this site -- many, many thanks for taking the time to maintain this whole thing. I know what it takes, as I have about 40 web properties myself. My donation is forthcoming.
Best of luck to all in the coming year, and may each and every one of you enter into remission and never return.
Warmest regards,
LovinItAll
|
|
 IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
 
Gender: 
Posts: 11720
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #1 on: Jan 26th, 2008, 9:25am » |
Quote Modify
|
Hello!
I'm glad to see you're well armed and I'm very glad you've found us. Nothing compares to having others to talk to. There will be alot of support for your wife here too and I'm sorry to hear of her suffering, migraine is a horrible condition too and she really has my sympathy, empathy - call it what you will! We understand, that's what counts.
As well as triptans and O2 alot of us find help from some home remedies as we call them. Strong coffee and energy drinks like red bill can relaly help as caffeine is also a vaso constrictor. If chugged at first twinge they can really knock it on the head. Also ice/heat can help. For me, heat is a trigger but ice packs are wonderful - I joke about frozen pea's being my best friend!
Stay around, join the family - the welcome mat is out for both you AND Mrs Lovin itall!
Best wishes to you both for pain free time
Helen
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
LovinItAll
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 13
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #2 on: Jan 26th, 2008, 9:45am » |
Quote Modify
|
Thank you for the warm welcome, it's really appreciated.
Yes, I forgot to mention that I am now capable, in under 5 minutes, of drinking the 12 cups my Krups brews. Well, drink isn't really the right word -- guzzle would be more applicable.
Very funny about the peas! I was using regular 'cold packs', but I just picked up a really long warm/cold thingie from The Sharper Image...they say not to put it in the freezer, but that's it's home and it doesn't seem to mind. I can wrap it around my entire head (don't be hatin' on me 'cause my head's small...my nose takes up the slack), and it helps absorb the impact when I'm tapping my head against the wall (that's not a joke).
Red Bull -- I never thought I'd say it because I truly dislike the stuff, but thanks for the suggestion. I never thought about it, but you're right, it would be a great caffeine boost. It's already on the grocery list......
Have a great weekend, and I will extend your welcome to Ms. LovinItAll...I'm lucky, 'cause I done found me a fine lassie, indeed.
Best ~ RLR
|
|
IP Logged |
|
|
|
gizmo
New Board Junior
  
Gender: 
Posts: 91
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #3 on: Jan 26th, 2008, 10:19am » |
Quote Modify
|
> Red Bull -- I never thought I'd say it because I truly dislike the stuff
Same for me, but since I got the tip and discovered that it helps I adjusted myself to the taste and now even sort of like it 
If you have problems with the sparkling open them up and put them in the fridge long enough.
Make sure you don't buy the diet version, at least to me it has no effect (probably due to the Aspartam).
Oliver
|
|
IP Logged |
|
|
|
Stinger
New Board Junior
I love YaBB 1G - SP1!
Gender:
Posts: 75
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #4 on: Jan 26th, 2008, 12:02pm » |
Quote Modify
|
I hate red bull taste, too, but since coming here a few days ago, I have learned to like it somewhat. I've tried it about four times now and it seems to take the edge off and stops the headache half way through. That is nice. A lot of people, me included, suffered for years before we found out what it was and that by the time you took something, the headache was over anyway. I never saw this link for many cycles. For me, it is a time thing. I pace the house and watch the clock, trying not to look at the clock too often, making time actually seem slower, but I know that it will end within 45 minutes and that gets me through somehow.
Hang in there and good luck.
|
|
IP Logged |
|
|
|
LovinItAll
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 13
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #5 on: Jan 26th, 2008, 12:22pm » |
Quote Modify
|
I know exactly what you mean about the time. I've struggled with 'stroke anxiety', expecially when I hit 10 on the Richter scale. I pace or rock, saying my ABC's aloud -- backward. It somehow makes me focus on something (and reasures me that I'm not slurring), and that often offers a brief respite (in milliseconds, it seems like, but every little bit helps). I always think, "Okay, I can take this for 5 more minutes", and then in 5 minutes, "I can take this for 5 more minutes." I guess the AA and NA folks have their 'one day at a time' saying, so my '5 minute at a time' thing helps get me through it.
Hey, if I ever have to take one of those field sobriety tests (I don't drink) and they ask me to say the alphabet backwards, I can rip through it now! Hell, I can even sing it in tune -- how sad is that?!
I have read on here that the recommended O2 flow rate is between 10-15 lpm with a rebreather. My doc prescribed 8 lpm with a regular face mask. I'm sure he'll change it if I ask, but I didn't know anything about it until I found this place this morning. My reg only goes to 8 lpm. I haven't had to use it yet, so maybe I'll get the right stuff it in place before I actually need it.
Take care ~ RLR
|
|
IP Logged |
|
|
|
RichardN
New Board Hall of Famer
 
Gender:
Posts: 690
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #6 on: Jan 26th, 2008, 12:51pm » |
Quote Modify
|
Hi & Welcome to Clusterville
That should be a NON-rebreather mask (the one with the bag) My first reg was also 8 lpm (with nasal canulae . .. the nose-thingy). You DO need the 15 lpm regulator and the proper mask (and get a Clustermasx when they become available again . . . even more effective).
Also, for your lady, . . . . many here suffere from CH and migraine and report that 02 can be very effective for migrains also. This info pissed off my wife, now that we have 02 available at all times, as her migraines stopped when when she reached menopause . . . had them for 35 yrs . . . I can remember one lasting four days/three nights and they mimicked your wife's symptoms.
Glad you found us. Stick around. These folks saved my life, and it's a godsend to have actual people to talk to who truly understand your pain.
Be Safe, PFDANs
Richard
|
|
IP Logged |
I can live with the beast as long as I don't have to "dance" with the bastard.
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #7 on: Jan 26th, 2008, 12:54pm » |
Quote Modify
|
I believe you meant to say a NON-rebreather.
The first pic is what it looks like. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
8lpm wouldn't do squat for me. There is research going on now that 25 lpm regulator works wonders....but it should go to at LEAST 15
Linda
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
LovinItAll
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 13
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #8 on: Jan 26th, 2008, 5:34pm » |
Quote Modify
|
on Jan 26th, 2008, 12:54pm, Linda_Howell wrote:
I believe you meant to say a NON-rebreather.
Linda |
|
I can assure you I don't know what the hell I'm talking about -- I'm not that smart. That I missed a 50/50 shot (rebreather/non-rebreather) is evidence of that.
Thank you for the link. I will make sure I get the right thing.
Richard: Thanks for the info regarding the O2 and regular migraines. I'll pass it on to my better half -- I'm sure she will try it. For her, the vasos have been very effective, but she still gets some really bad ones from time to time. To think she went for years taking fiorcet (sp?) with absolutely no relief...in fact, she had awful rebounds from that stuff.
Thanks to all for the warm welcome. I don't feel like I have much to contribute, and I hate to whine. The site is awesome....why I didn't find it sooner is beyond me.
Warmest regards,
Lee
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #9 on: Jan 26th, 2008, 6:08pm » |
Quote Modify
|
Just being here, being a part of the family is a help. We all go through this together and even if you're still learning just remember, we all had to as well! You know the pain, you know the "loneliness" of it - you understand us as much as we understand you.
Glad you're on board!
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
ski2k
New Board Old Timer
Gender:
Posts: 458
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #10 on: Jan 26th, 2008, 7:15pm » |
Quote Modify
|
For those of you who hate the taste of Red Bull, check this out: http://tommydfungus.googlepages.com/taurinepage1
This was put together by one of the family here, Tommy, and it helped me find something I can stand. Red Bull doesn't have some magical ingredient in it. Any energy drink with the combo Taurine and Caffeine will do the trick! I found one called Rip-It (citrus X flavor) that I like. There's a lot more out there, and many taste better than RB.
Hope this helps, and welcome aboard!
Adam
Forgot to mention... A lot of the drinks listed in that link have more caffeine and taurine than Red Bull, and in theory, makes them even more effective.
Thanx again to Tommy D for putting that together!!
|
| « Last Edit: Jan 26th, 2008, 7:20pm by ski2k » |
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
|
|
|
Linda_Howell
CH.com Alumnus
New Board Hall of Famer
Hearing is one thing. Listening is another.
Gender:
Posts: 6721
|
|
Re: Newcomer Saying 'Hi' (with a little ramble)
« Reply #11 on: Jan 26th, 2008, 8:03pm » |
Quote Modify
|
Quote:| I can assure you I don't know what the hell I'm talking about -- I'm not that smart. |
|
I didn't mean to sound insulting. Honest. You're just as smart as the rest of us before we found this place and started sharing and researching information, hun.
Please don't stop asking questions. That's how we learn. Go to the OUCH web-site and read. A lot. Many hours of useful data is there that will bring you up to speed and................most of us will tell you that we are all more informed than our Doctors about this condition. Physicians get about 5 hours of training in headaches during their schooling, and that is ALL kinds of headaches. Migraines, tension etal. Can you imagine how much they get in such a rare form such as CH????
We have to be our own best advocates in this.
Linda, who welcomes you to the nuthouse.
|
|
IP Logged |
Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss