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Topic: I am a newbie from Tx (Read 367 times) |
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TxBasslady
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I am a newbie from Tx
« on: Sep 5th, 2003, 2:35pm » |
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I have not a clue as to if I am doing this right. Have been reading in this forum and on the Ch site for a year and 1/2. That was when I had my first visit from this beast. Have only had sporadic visits till Aug of this year. But have had only 3 pf days since August 11. This is undoubtedly the worst thing I have ever experienced. I have had an MRI to satisfy myself and my husband that this is not life threatening. My doctor has give me a rx for Frova. My attacks are always at night...usually within 1 to 2 hours after I go to sleep. I have the typical type symptoms that most all of you say you have(I have sat here for hours reading your posts). My attacks are on the right side of my head, my right eye is totally involved and the area behind my ear. It is as if my scalp is being ripped from my head. My husband has been a great supporter and is always the first one up....he runs to get my meds, then sits w/ me and applies cold icey compresses to my eye and head area. The Frova is the only medication I have taken, and it does reduce the time of the attack. It does nothing for the intensity, but from the time I take the medication to end of attack is from 13 to 18 minutes. We sit together, well he sits and I rock like a baby, crying w/ the writhing pain I feel in my head. I plan to see a neurologist, or from what I have read from all of you, that seems to be the best. I have felt most all of the emotions that you all have felt...including that death must be better than this pain. However, I have 3 wonderful sons, and grandchildren, and I know that there is a better solution than death. So far, I have had no daytime attacks, but the nightime attacks have become more unbearable. So many of you seem to have this 10x's worse than I. I feel as though I am held prisoner by this beast. I am an avid bassfisherman (or fisherlady...lmao) and I am afraid now to show up for my next scheduled tournament, in fear that I will have an attack and not be able to handle it. I am retired from Law Enforcement, and had a great 8 years of fun and fishing before this beast became a daily part of my being. I feel helpless. But today I decided to join this special group in hopes that together I can at least cope w/the feelings and the pain. I hope that in some small way I can help someone else. I can't seem to help myself much. But you guys seem to be a great bunch of folks. There's evidently no cure for this...but I welcome the support.
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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echo
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Re: I am a newbie from Tx
« Reply #1 on: Sep 5th, 2003, 2:40pm » |
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Sorry to read that you have become another victim of the beast. From what you state it sure sounds like you are one of us.
Glad you were able to enjoy the start of your retirement. Sorry that the SOB wants to invade your life.
Hopefully the neuro will find the correct preventative combo platter of drugs you need to keep the beast at bay.
From one ex-cop to another. Welcome to the MB.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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hopefull
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Re: I am a newbie from Tx
« Reply #2 on: Sep 5th, 2003, 3:09pm » |
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Fellow texan here wish you didn't have to go thru this but we're here for you...
I too have kids and grandkids they're what keep you going those smiles and hugs....
Hang in there*smile*
Jean
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OneEyeBlind
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Re: I am a newbie from Tx
« Reply #3 on: Sep 5th, 2003, 3:10pm » |
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Welcome to the board Jean. Sorry you have to be here. If the beast is only hitting at night ............. do all the stuff you want to do during the daytime !!!!!!!!! Enjoy that bass fishing (love it myself !!) and enjoy life. Imitrex injections might work a little faster than what you are using .. they work withing 5 - 10 minutes and make life bearable. You just have to get used to the fact that you are gonna wake up with a banger, do your shot, and get back to bed fast !!! I never mastered this techniche myself ... but should I ever have another cycle I swear I will NOT LET THE BEAST KEEP ME UP WITH FEAR !!!!!! Good luck to ya ......... and welcome to the board !!!!!!!!!!!
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stevegeebe
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Re: I am a newbie from Tx
« Reply #4 on: Sep 5th, 2003, 3:57pm » |
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Howdy.
Steve G
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5-string
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Re: I am a newbie from Tx
« Reply #5 on: Sep 5th, 2003, 4:31pm » |
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Welcome,
I'm new here as well but been suffering without meds for 4 years. I just saw a neuro for the first time on wed. She knew exactly what these things are and prescribed oxygen,verapamil, gave me samples of Imitrex nasal spray. I'll tell ya, for me that Imitrex was amazing, considering I've taken nothing but over the counter stuff till now. But as you've read everybody's a little to alot different as to what works.
Good luck with your research and appt's.
Take care and keep in touch,
Mark.
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Carl_D
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Welcome to the fold. There is an enormous amount of support and also some great suggestions from people who have been where you are. Definitely try the oxygen therapy, as it works for most to shorten the attack. You must start breathing it when you first feel it. Though you did say they are mainly hitting you at night, so that might be hard for you. Do inquire with your doc about Imitrex injections. It is easy (you don't have to sit there and work it in), it is like a big marker with a plunger. You press the button, the meds work through the system and shorten the attack span.
Sorry you have these bastages, but you have come to the right place. No one can relate to it the way another sufferer can.
Peace,
Carl D
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cootie
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Re: I am a newbie from Tx
« Reply #7 on: Sep 5th, 2003, 5:28pm » |
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Hi TxBasslady...how ya doin with all this now........get to do anymore fishin.....that sounds purday cool. Hopein yer gettin closer to bein PF and hangin onto that pole ! Boy lotta ex cops in here.......officer......what's my legal drinkin limit at 108 lbs Pam  ;D ;D
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kim
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Re: I am a newbie from Tx
« Reply #8 on: Sep 5th, 2003, 5:54pm » |
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Hey TxBasslady,
Yer in the rite place and the support welcomes YOU 
Things are gonna get better****
Well wishes, kim
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judyw
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Re: I am a newbie from Tx
« Reply #9 on: Sep 5th, 2003, 5:58pm » |
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Welcome to your home away from home...Sorry you were invited, but cannot beat it for information, understanding and support...I will beat your fellow Texan is saying "take what you need, leave the rest"...Happy pf fishing to you....Hugs to your husband for being such a great supporter... PPP
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judyw143
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cathy
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Re: I am a newbie from Tx
« Reply #10 on: Sep 5th, 2003, 6:17pm » |
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Welcome to the family
cathy
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Cooked Brain
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Re: I am a newbie from Tx
« Reply #11 on: Sep 5th, 2003, 7:20pm » |
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welcome to the board!
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Charlie
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Re: I am a newbie from Tx
« Reply #12 on: Sep 5th, 2003, 8:26pm » |
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Welcome to our ward. Your nighttime attacks are like so many. You fit the profile. I became more nocturnal as a result. Stick around. You may have been here but:
Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”
http://www.netsync.net/users/charlies/
http://www.ouch-uk.org/ch/note_colleagues.cfm
Charlie
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TxBasslady
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Re: I am a newbie from Tx
« Reply #13 on: Sep 6th, 2003, 2:00am » |
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Oh my, thanks so much to all of you for the warm welcome. I thank you for the good info on the meds you take. I have alot of information printed from this site and plan to take it w* TxBasslady when I can get an appointment w/neurologist.
It's after 2 a.m. here...hate to go to sleep. I know that I will not make it thru the night w/o this horrible beast at my side. But even if I put off going to sleep till later, he still finds me lol. I always considered myself a smart person, but damn, I believe I have met my match. He can't be fooled, I don't think.
Anyway, again thanks to all of you...hope pfdan to you all.
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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Prense
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Re: I am a newbie from Tx
« Reply #14 on: Sep 6th, 2003, 10:21am » |
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Hey there TX! Welcome aboard...where at in TX are you from? I am in neighboring NM (yes, that is in the US  ) I agree, definately see the neuro, but I want to share my experience with you. For me, getting a neuro appointment (a good one anyway) is taking a couple of months. The last neuro I was seeing did not take too kindly to me trying to "stiffarm" him with info. I just recently went back to a GP (3 hour waiting time for the appt) loaded with info, and he was VERY receptive. He prescribed EVERYTHING I asked him to and did so in decent quantities.
13 to 18 minutes is not bad for relief with CH, but I can say that imitrex injection has killed mine in less than 15 mins....somewhere around 12-13. I have 0 experience with Frova, but if you are looking for something faster, try the imitrex if you can. Additionally, demand O2 to help supplement the imitrex. Imitrex only comes 2 to a box, and you can only take 2 "full" doses in a 24 hour period. (see the imitrex tip on the left)
Bottom line...keep the neuro appointment, but if you gotta wait forever to get in, go back and "stiffarm" your GP (if that is a practical option for you) Also, you may find it easier to convince a GP to prescribe what you want vs a neuro.
Best wishes!
Chris
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TxBasslady
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Re: I am a newbie from Tx
« Reply #15 on: Sep 6th, 2003, 3:00pm » |
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Hi Chris,
I live in the Houston area. I am a native Texan and a native Houstonian.
My dr (gp) agreed with me a year 1/2 ago that I had CH. When I went back to him couple weeks ago, he gave me the Frova. It states plainly on the pak that it is for migraines. I was disappointed, and in tears, I inquired as to why the meds for migraines. I had migraines many years ago, and I KNOW the difference in a migraine and a CH. He asked me to just try it and see if it helped. As I stated...it does help the duration but the intensity is as bad as ever. I am debating on whether to see my gp again, or opt for a neuro. You are right, it is about a 2 month wait here to see a neuro.
Maybe I can use my feminine traits and tactics to get my gp to do what I want....lmao. However, he is from Wales, a great dr., just not sure what I can get away with.
But, with some luck, maybe I can get him to give me the imitrex and a rx for the 02.
Thanks for takin the time to help, sweetie. This all means so very much to me.
I know now that I cannot do this alone........
Hope u have many pfdan's
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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OneEyeBlind
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Re: I am a newbie from Tx
« Reply #16 on: Sep 6th, 2003, 3:17pm » |
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Go back to your GP again, and explain (and print out if need be) the necessity of O2 and Imitrex injections. Also the verap as a preventative seems to help lots of people here. My GP was understanding and looked the stuff up ........ sure enough ... she saw that it was for CH. Don't worry about getting stuff that says it's for migraines ... heck Imitrex is for migraines as well (they have commercials for it)........ but it works for clusters as well !!!!!!!! Lots of the same meds are used. The dosage you require is different, that's all. Good luck ... and keep rowing along ........ we are rowing with you !!!!!
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Melissa
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Re: I am a newbie from Tx
« Reply #17 on: Sep 6th, 2003, 3:34pm » |
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Welcome TXBasslady to ch.com! Along with the great advice you have been given by fellow sufferers here, I would also like to point you to another web site called O.U.C.H. (Organization for Understanding Cluster Headaches) You can find it here:
http://www.clusterheadaches.org
Click on the link that says "Cluster Help", there you will find all the ammo you need to help fight clusters and deal with docs, etc.!
Again, welcome to the family!
 mel
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jim_bo
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Re: I am a newbie from Tx
« Reply #18 on: Sep 6th, 2003, 5:12pm » |
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I'm new to this site also,but not to CH,s .36 years.Your are going to try alot of medications and i hope you find some help.Ask your doc about Relpax it works for me.Iwhis you good luck.
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Hooter
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Re: I am a newbie from Tx
« Reply #19 on: Sep 6th, 2003, 6:18pm » |
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Hi Jean
Welcome to the board and Clusterville, sorry you have to be here.
Pretty terrifying for those who know me, but I am a retired cop as well!
I did some archive checking about Frova (which is a migraine Triptan similar to Zomig) for someone else here, and most people on this site didn't find it that good for CH. If you want to look for yourself, got to the Search section above and just plug in Frova.
As you can tell, the highest proportion of people here swear by Imitrex and Oxygen ( I do too)
Hope you get treatment you are happier with very soon
Wendy the Brit
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goaway
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Re: I am a newbie from Tx
« Reply #20 on: Sep 6th, 2003, 6:37pm » |
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Hi Jean!
Welcome to the team! Hope that you get the neuro visit soon.
I like to do the "wet stringy" thing too. Please don't let the beast stop your enjoyment of fishing. Keep on fishing....just remember, though, if the beast visits you while you're in the boat....lay down flat (you don't want to fall in the water.)
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Linda T
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Re: I am a newbie from Tx
« Reply #21 on: Sep 6th, 2003, 7:09pm » |
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Hi Jean and welcome.
Sorry that you're in the middle of this right now. We all know how rough it is. I'm the type of person who needs my solid 10 hours sleep at night (really). So 3 hits a night during cycle kinda puts a crimp on that!
Can't really add much to what's already been said. I would take the imitrex tabs when I would get hit and sometimes it would take up to 30 minutes to work. While I was waiting for the imitirex to kick in I would stand in a hot shower. 95% of the time, the hot water would abort the attack in minutes. The trick was to get in the shower as fast as you can. I would do that while my hubby was running for the imitrex. Then I would stand in the shower for a while even after the attack was over (just to be on the safe side). After that the imitrex would kick in and I would at least get a couple hours sleep before the next one. Then I repeated the same procedure.
There are alot of "home remedies" on the board as I'm sure you've notice. Some like excerise, caffeine, cold water, etc. Keep trying something until it fits.
Good luck and wishing you all PFDAN always, Linda T
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What a long, strange trip it's been!
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BarbaraD
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Re: I am a newbie from Tx
« Reply #22 on: Sep 7th, 2003, 5:06am » |
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Hey TX,
I'm in Gladewater (the INternational headquarters of OUCH - about the only distinction Gladewater has). Too bad you're not here - I'd get you in to see my neuro - he's the absolute BEST on CH. He's in Longview (he has migraines and keeps up with ALL the latest on ALL types of HAs). He treats a BUNCH of CH patients. And he even RETURNS calls.
But get to your primary doc and get him in the loop. I'd never make it without my gp. He's been a lifesaver. I see my neuro every six month (my 50,000 mile check up now that I'm in remission - sorta) and the rest we handle through the gp. If my gp thinks it warrants bringing in the neuro he calls him. Most of the time we can handle it without the neuro.
Now some serious business - we need to form a Texas Chapter of OUCH. There's WAY too many of us not to do something. I'm going to FL next month to the thingy with their group and see what the devil Donna did to get them organized. Don't lose touch. TX is next.
I'm not retired from law enforcement but I do have a grandson - does that count?
Hugs BD
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TxBasslady
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Re: I am a newbie from Tx
« Reply #23 on: Sep 7th, 2003, 8:50am » |
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Hi Barbara,
Geeez, we could almost be neighbors. Longview is not that far from where I live. Not sure where Gladewater is. But am assuming it is close. My Mom & Dad lived in Alto, Tx. East Texas is like home to me. I fish the beautiful lake waters of Sam Rayburn and Toledo Bend. I have a beautiful lakehouse on Toledo Bend.
Was not aware that the hq of OUCH was in Gladewater. Wow, learn something new everyday.
I could become very interested in an involvement with this organization. I only have a couple more bass tournies before the season ends for me.
With each visit from the "beast", I become more convinced that there are not enough folks aware of this horrible nightmare.
The "beast" visited me twice in the early a.m. today. I went to bed around 2:30 a.m.....at 3:35 I had the 1st visit. After about 20 min., I went back to sleep, only to be awakened at 5:40, with the 2nd visit. I am exhausted, but I normally have no CH during the day. So, I can make it thru this day with the couple hours sleep I got. Knowing however, that when I go to bed tonight or in the early hours of tomorrow, surely my nightly visitor will again be at my side.
I would love to stay in touch, and possibly help with whatever I can do to help with educating others about CH and OUCH.
Btw, if I can't get my gp to see things my way, I may contact you again and find out the info on your dr. A trip to Longview is the scenic route ;D
And yes, btw, grandson's do count....my grandson is my little fishin buddy. He's 9 yoa...and would stay on the lake with me for days. He loves the speed and power of the bass boat, but loves the end of the ride where we find those favorite spots we like to fish.
Wishin for you many more pfdan....thank you, for being here
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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