Author |
Topic: New kid on the block (Read 253 times) |
|
Guido
New Board Junior
The Miracle is in the moment
 
Gender: 
Posts: 72
|
 |
New kid on the block
« on: Oct 4th, 2004, 10:22am » |
 Quote  Modify
|
Hello fellow sufferers.
I found your site last night and am thankful for your efforts.
I went to the doc last week and he gave me some Maxalt and Amitriptyline, and then said he would have his nurse call me in a couple of weeks. Not once did he use the word cluster, as a matter of fact he seemed more perplexed then anything else.
After finding your site I am perplexed about his perplextion ( lol. I just love inventing new words). I told him my symptoms and that I had these symptoms a couple of years ago, and now they’re back.
The Maxalt didn't seem to slow the pain down at all. I am making an effort to drink www as this site suggests and will be making another appointment to see the doc. I would seem I will be informing him, and talk about the oxygen treatment.
Regarding this site, I found it most informational. When your doctor gives you that RCA dog look when you tell him what your feeling it is nice to know that there are others that can explain what we have. I had no idea and now I do.
Thanks again 
|
|
 IP Logged |
He will come. You may put him off for awhile but, he will come. 
|
|
|
don
Guest
|
Welcome.
Print all the treatment options on the site. Plop on his desk next visit then ask for a referal to a good neuro.
|
|
IP Logged |
|
|
|
StueyStu
New Board Newbie
I am the Master of My Own Fate Most of the Time
Gender:
Posts: 47
|
|
Re: New kid on the block
« Reply #2 on: Oct 4th, 2004, 10:29am » |
Quote Modify
|
Wecome but sorry you gotta be here. Having these things are horrible, scary, fucked up and various other adjectives. Learn as much as possible and take it to the doctor and school him/her. If they aren't open then find a new neuro who knows what's real and what isn't. Stuey
|
|
IP Logged |
|
|
|
Donna_H
CH.com Alumnus
New Board Junior
Donna's doodles. All's fair that ends well.
Gender: 
Posts: 74
|
|
Re: New kid on the block
« Reply #4 on: Oct 4th, 2004, 10:42am » |
Quote Modify
|
Among the things that you copy, be sure to take a copy of the cluster quiz that you have filled out and the Kip Scale, etc. You have a lot of homework to do if you intend to teach an uninformed doc.
We're sincerely glad that you found us as our goal is to someday free the world of cluster headaches. See the OUCH site, listed in the left margin, and tell your doc about it too.
Welcome home.
|
|
IP Logged |
Former ch sufferer (28 yrs.) , current supporter to my 33 yr old son.
One black day (Oct. 2, 2004) my post count of 1200 something, went back down to one. I'm an "old timer" in more ways than one.
|
|
|
ExplodingEyeBall
New Board Hall of Famer
I can't think of anything clever to put here.
Gender:
Posts: 2589
|
|
Re: New kid on the block
« Reply #5 on: Oct 4th, 2004, 11:43am » |
Quote Modify
|
Can someone give him the link to the Cluster Headache Letter that has been posted here a couple of times?
I'm referring to the one that Was posted recently for people to hand to their family and friends instead of trying to explain it.
I tried to paste the text here but it's to long and I don't have the URL for it anywhere.
Pat
|
|
IP Logged |
Just poke out my eye and get it over with!!!
|
|
|
Mr. Happy
CH.com Alumnus
New Board Hall of Famer
If I can do it, it ain't art.
   
Gender:
Posts: 2217
|
|
Re: New kid on the block
« Reply #6 on: Oct 4th, 2004, 12:08pm » |
Quote Modify
|
There are a number of things worth printing on the OUCH site www.clusterheadaches.org Under the OUCH drop-down menu, go for "Colleagues Letter." The Employers letter is under "Cluster Help/Cluster Resources/Dealing with Employers."
Why pass out individual links, when there's a grand tour waiting to be taken?
Print, print, print,
RJ
|
|
IP Logged |
May those who don't want any
Have memories of never getting any.
|
|
|
don
Guest
|
One other thing. I wouldn't expect your Doc to sit down and read it all.
Just knowing that you know will probably be enough to scare him into a neuro referal.
|
|
IP Logged |
|
|
|
Jeepgun
Guest
|
Guido, you may want to go through the printout with a hi-lighter and highlight your specific symptoms out of the list of symptoms, and also highlight the three/four treatment options that are listed.
Good luck and PFDAN to you.
-Frank
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
 
Gender:
Posts: 14968
|
|
Re: New kid on the block
« Reply #9 on: Oct 4th, 2004, 2:53pm » |
Quote Modify
|
Welcome aboard and here you will find a wealth of information and ideas for dealing with this horror.
Aside from the site information, here is a link to our U. K. friend's letter describing for others and employers that CH has little to do with what others think when they hear "headache." You might want to drop down to: "How is your friend affected?"
http://www.clusterheadaches.org.uk/home/index.cfm?
I had great success with the following technique:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
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.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.
I hope this technique is helpful and I wish you the best of luck
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
TomM
New Board Hall of Famer
Gender:
Posts: 2006
|
|
Re: New kid on the block
« Reply #10 on: Oct 4th, 2004, 3:12pm » |
Quote Modify
|
Welcome and good luck. Lots of good information and great people here.
TomM
|
| « Last Edit: Oct 4th, 2004, 3:12pm by TomM » |
IP Logged |
"Everyone should believe in something. I believe I'll go fishing."
--Thoreau--
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: New kid on the block
« Reply #11 on: Oct 4th, 2004, 7:37pm » |
Quote Modify
|
Go to it Guido!!!
Learing how to get the point across in 30seconds helps LOL... Get a referral to the neuro. Good luck.
BB
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
Leesa
New Board Hall of Famer
Gender:
Posts: 1950
|
|
Re: New kid on the block
« Reply #12 on: Oct 4th, 2004, 9:33pm » |
Quote Modify
|
Glad you found us but sorry your here. Welcome to the family hun!! Be a sponge and soak it all in hun. Here is the BEST care anywhere. None better in the world! Best of luck and keep us posted!!
Leesa 
|
|
IP Logged |
"The truth of the matter is that you always know the right thing to do. The hard part is doing it." General H. Norman Schwarzkopf
|
|
|
Ree
New Board Hall of Famer
2008's my year to shine~SUN IS OUT!!!YAY
 
Gender:
Posts: 5236
|
|
Re: New kid on the block
« Reply #13 on: Oct 4th, 2004, 11:18pm » |
Quote Modify
|
Welcome to the family... You found this site exactly the way I found it... but our family had the diagnosis. The treatment your doc gave you is usually one of the first that they would give for Migraine an sometimes "Cluster" the Maxalt has to get into your system it doesnt work as a pain reliever...more like a preventative...The amytriptaline is the first med that they gave me for Migraine as well as my hubby for cluster to aid in sleep. It is also a mild antidepressant and can give you some vivid dreams so beware. Keep tabs on how you feel to be aware of any side effects and log your attacks so that you can keep track of your cycle. It really is a phenomenon... the way the clock inside your body works to know just when to wack you with one of these attacks... You will learn how to treat them and adjust your meds accordingly... You need an abortive though some feel that Maxalt is an abortive I don't know (but Im sure there are people) anyone that has real luck with that drug. It can effect your memory and make you feel forgetful... rambling here Good luck keep us posted and again Welcome... Ree
|
|
IP Logged |
Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss