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Topic: Hi there! (Read 4490 times) |
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Guiseppi
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Re: Hi there!
« Reply #25 on: Apr 30th, 2008, 5:03pm » |
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It does and I understand. We gently (and lovingly  ) remind each other constantly to stay in touch with our doctors when we adjust meds. I did a lot of stupid stuff out of frustration that will possibly cause me long term health problems in the future. (stuff like having all your friends horde prednisone and staying on it for 6-8 months at a time  ) I still stockpile when off cycle so I'm always ready when they show back up again.
As much as you hate even thinking about them when off cycle...cuz I do too!!!....it's best to get on the patient list of a good neuro, get all the groundwork done so when you go back on cycle you're both already on the same page!
All said with love AND understanding! 
Guiseppi
(And Brewman...the clock shows I beat you by a FULL minute.....and tell your team I said they're welcome for Cameron....sigh...)
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Brew
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Re: Hi there!
« Reply #26 on: Apr 30th, 2008, 5:09pm » |
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on Apr 30th, 2008, 5:03pm, Guiseppi wrote:| (And Brewman...the clock shows I beat you by a FULL minute.....and tell your team I said they're welcome for Cameron....sigh...) |
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Ahem - I believe it shows I beat YOU by a minute.
...and tell your team I said thank you. That guy has wings on his shoes.
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Jean
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Re: Hi there!
« Reply #27 on: May 1st, 2008, 10:12am » |
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Hi again,
Still having strong shadows. My right eye has started the watering and is blurry. Right nostril feels swollen. Stayed awake for a lot of the night because I was afraid to wake up. Trying to not worry but it is hard. I almost feel like the HA is teasing me as I still haven't been hit yet. grateful for that though. I think I'll try the RedBull. Been avoiding it cause I can't stand the stuff. Sorry for bring a whineyass again. Thanks for listening.
Jeannie
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Brew
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Re: Hi there!
« Reply #28 on: May 1st, 2008, 10:15am » |
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on May 1st, 2008, 10:12am, boohoo wrote:| I think I'll try the RedBull. Been avoiding it cause I can't stand the stuff. |
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Next time you're out, buy some NOS. Same caffeine/taurine amounts per serving (or close). Comes in three flavors - passionfruit (original), fruit punch, and grape. Soooo much more palatable than Red Bull.
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Jean
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Re: Hi there!
« Reply #29 on: May 1st, 2008, 10:40am » |
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Thanks!
Jeannie
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DennisM1045
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Re: Hi there!
« Reply #30 on: May 1st, 2008, 12:17pm » |
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Rock Star is another alternative. I got to like the taste the first time it knocked out a hit
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Brew
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Re: Hi there!
« Reply #31 on: May 1st, 2008, 1:06pm » |
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Thus proving that all of Dennis' taste is in his mouth. 
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DennisM1045
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Re: Hi there!
« Reply #32 on: May 1st, 2008, 2:46pm » |
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on May 1st, 2008, 1:06pm, Brew wrote:| Thus proving that all of Dennis' taste is in his mouth. |
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I'm a proud member of the "I'd drink 30 weight straight from the can if it would knock out a hit" club.
-Dennis-
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Batch
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Re: Hi there!
« Reply #33 on: May 1st, 2008, 9:51pm » |
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Hey Jeanie,
You've received a lot of great advice... Now take the time to get a prescription for oxygen. Shoot'n shadows with O2 is a hoot... You've no idea how wonderful it feels to gain control of your life again once you start using oxygen therapy and gain the confidence of knowing you can beat the beast.
Take care,
V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, not any before nor after, that’s as lovely as a great airplane. Man has one virginity to lose in fighters, and if it is a lovely airplane he loses it to, there is where his heart will forever be.
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torro2005
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Re: Hi there!
« Reply #34 on: May 1st, 2008, 10:06pm » |
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Hello Jeannie, also just came here and reading reading..time plenty cause it's my third wake-up shift this night..
I'll give you a tip to lenghten the use of your 2 imitrex ampuls a week.
I do it all the time cause I have well over 2 attacks a day and 2 ampuls a day is the max you may take.
It goes like this: pull out the ampul of the box and scraths down the paper around it so you can see the total amount of fluide.
Take a stick or something that fits in the ampul with which you can inject the fluide (I mostly use a ballpointfill but anything that fits will do offcourse).
Bring in the needle (I do the stomach so I can easely use both hands) and press half an amount in to start with.
It's important you inject as soon as possible so start injecting as soon as the shadow or attack comes up.
If it works also with you, you dubbel the use of your Imitrex-ampul and you can start trying to inject a third of the amount. This mostly often works also with me. So then you triple your ampul-use. I asked a doctor and it's only recommended you donn't exceed 12mg in 24hours and leave a minimum of one hour between 2 injections.
I also make a very strong cup off coffee rightaway I feel one's coming and drink it fast right after I injected, first running it through my mouth before swollowing (the caffeine absorbes faster then).
During an attack I sit or stand comletely still (not always possible if it becomes too bad..), breathe with open mouth and concentrate fully on my neck which I move very slowly on the painwaves trying to search and move between them. It helps me often.
Hope it can be of some help to you too.
Gerard
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Jean
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Re: Hi there!
« Reply #35 on: May 2nd, 2008, 9:20am » |
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Hi,
Thanks to all for all the great advice!
I woke up feeling pretty good this morning. Not much of a shadow at all. Tonight is usually "date night" with my hubby. I'll have to skip the couple of beers though.(again)
Hope that you all have a great PF weekend!
Jeannie
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RichardN
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Re: Hi there!
« Reply #36 on: May 2nd, 2008, 11:28am » |
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Hi again Boo
Make sure you take the 02 info with you when you see your next doc. DON'T leave his office without the script. 02 IS a recognized abortive for CH . . . and if he won't consider it . . . leave and seek another.
Re upping the Verapamil. Giuseppi is right about the monitoring. Verapamil affects blood pressure . . . which is why I stopped using it four years ago . . . my BP got uncomfortably low. Also, some folks have (and some don't . . . I did) problems with constipation while on Verapamil . . . very easily remedied with diet change or stool softeners. Just wanted you to be able to identify the cause if you have that particular symptom.
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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Jean
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Re: Hi there!
« Reply #37 on: May 4th, 2008, 3:17pm » |
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Hi,
I just wanted to thank everyone again for all of the great advice and for responding to all of my questions and posts. It really is nice to talk with people who are going through the same kinds of things that I am. (though I wouldn't wish it on anyone and I am still grateful that I have not been hit as of yet.)
By Friday evening my shadow was back along with a twitching and tearing eye. I went out and got a Rock Star energy drink. It helped a lot!
Wishing you all a wonderful and PF week ahead!
Jeannie
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mezza
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Re: Hi there!
« Reply #38 on: May 4th, 2008, 10:04pm » |
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Hi jean
I can relate to the 'afraid to go to sleep because you fear an attack in the am' had plenty of those nights this past cycle.
you may want to talk to your neuro about your dosage of meds- I take 660 mg of verap- 240 in am 240 around 3 and 180 at night- he determined when to increase the dosages based on my pain- I was seeing him every 2 weeks when in full cycle - now will taper back down soon
good luck to you
kelly
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DennisM1045
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Re: Hi there!
« Reply #39 on: May 6th, 2008, 12:52pm » |
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Hi Jean,
You really need to find a Dr soon. I don't mean to scare you but Verapamil really needs to be observed by a medical professional. Over a long period of time it can cause heart rythm problems. They go away when you stop using it.
My Neuro and GP work together to make sure I get regular EKGs.
-Dennis-
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Brew
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Re: Hi there!
« Reply #40 on: May 6th, 2008, 1:37pm » |
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Another thing to look into, boo - I've heard that taking anything with taurine (i.e., Rockstar) while on verapamil is a no-no. You might want to do a little research on this. I don't know any further details.
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