Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
New here and thrilled to have found this place. (Read 990 times)
fuzzy
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
New here and thrilled to have found this place.
Jun 29th, 2009 at 11:33am
 
HI there my name is Brenda and I am new here but, like most people here I am not new to the horrors of cluster headaches. I have been fighting off these vicious monsters for nearly 13 years. I have done research of my own and often think I am more aware of my treatment needs then most Docs’ I’ve seen. I find myself becoming more and more frustrated. My biggest frustration is having a nurse/doctor refer to my headache as a migraine or form of. Personally I would much prefer to have such a headache. I live in a small city on the east coast of Canada. (New Brunswick) where finding “good” health care is becoming more and more difficult and the waiting list are at incredible lengths. When I was first diagnosed with CH’s I did see a Neuro and was made to feel that my CH where of my own fault as I am a coffee drinker and smoked. IT was at that moment I felt truly alone in my losing battle  against  Cluster Headaches.
I am an Episodic Sufferer and currently on Prednisone. I have also found massage therapy to help while going through a “cluster cycle”. Typically I am a spring/fall suffer but for some reason perhaps the colder spring my CH cycle has decided to hit me now.
Back to top
  
 
IP Logged
 
miCHel
CH.com Veteran
***
Offline




Posts: 202
x1|Montreal (Candiac, Quebec)
Gender: male
Re: New here and thrilled to have found this place.
Reply #1 - Jun 29th, 2009 at 12:00pm
 
Hello Brenda,

Sorry you have to be here but glad you found this place.  There is so much knowledge here, it is incredible.  Don't be afraid to ask questions because you will be amazed at the quality of answers you will get.

I am just out of cycle myself.  It was a rather short one because Verapamil worked like a charm for me this time.  Are you taking only Prednisone?  Nothing to abort a hit like O2 or Imitrex?  Anyway, I wish you a very short cycle and lots of pain free days just ahead.

I will be visiting New Brunswick for the first time next week (Cap Pelé).  Can't wait to hit the beach and endanger the lobster specy... Wink

Take care!

miCHel
Back to top
  

Good one Scotty!  Now beam down my clothes...
 
IP Logged
 
Mosaicwench
CH.com Sponsor
***
Offline


www.mosaicwench.com


Posts: 3507
Near Milwaukee WI, USA
Gender: female
Re: New here and thrilled to have found this place.
Reply #2 - Jun 29th, 2009 at 2:08pm
 
Welcome!  I'm a supporter, but know the ins and outs of this beast intimately.

Read all you can here and ask as many questions as you need.  Someone much more knowledgeable than me will come along and answer them.

I'm glad you found us.  Welcome Home.
Back to top
  

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert
WWW http://www.facebook.com/home.php?id=1240423960&ref Mosaicwench  
IP Logged
 
Brew
CH.com Sponsor
CH.com Alumnus
***
Offline




Posts: 14163
Re: New here and thrilled to have found this place.
Reply #3 - Jun 29th, 2009 at 3:01pm
 
fuzzy wrote on Jun 29th, 2009 at 11:33am:
My biggest frustration is having a nurse/doctor refer to my headache as a migraine or form of.

Don't take it personally. Many times doctors have to refer to it this way (proper diagnosis coding) in order to get insurance companies to pay for treatment.
Back to top
  

"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
IP Logged
 
fuzzy
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: New here and thrilled to have found this place.
Reply #4 - Jun 29th, 2009 at 3:38pm
 
Thank you all!  I have spent lots of time here today just reading, it really is informative.

Michel: Yes, the only meds' i've been given has been Prednisone although I have done a lot of reading on the O2 which I am now looking into. Verapamil has been added to my research list. Again I feel I need to tell the Doc's around here what I need as they seem very unfamiliar to the CH hell.
I do hope you enjoy Cap Pele, its a very nice spot (about 2.5 hours from me) Be sure you get hard shell lobster!  Smiley
Back to top
  
 
IP Logged
 
Carl D
CH.com Hall of Famer
*****
Offline


25+ years CH Veteran


Posts: 640
|St. Louis|MO, USA
Gender: male
Re: New here and thrilled to have found this place.
Reply #5 - Jun 29th, 2009 at 3:58pm
 
Welcome to what will slowly become your home away from and at home. Definitely check into the o2, as it is THE best way to combat Clusters.

Peace,
Carl D
Back to top
  

Living proof that busting can turn a chronic to episodic!

Live each day as if it were your last because one day, you will be right.
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
WWW soylentmack mackdanger http://facebook.com/mackdaniels70 carld1970@yahoo.com cfd+returns  
IP Logged
 
Charlie
CH.com Alumnus
***
Offline


Happy to be here


Posts: 18971
Jamestown, NY
Gender: male
Re: New here and thrilled to have found this place.
Reply #6 - Jun 29th, 2009 at 6:51pm
 
Hi Brenda and welcome aboard. I just wish it wasn't because of this horror and the frustrations surrounding its diagnosis.

The best thing to do is stick around, read away and maybe download some information for your doctors. Here is one thing that helped me and the price is right:

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      
Back to top
  

There is nothing more satisfying than being shot at without result---Winston Churchill
135447360 mondocharlie mondocharlie  
IP Logged
 
Callico
CH.com Hall of Famer
*****
Offline


Author of "Stranded at
Romson's Lodge


Posts: 4916
Aurora IL
Gender: male
Re: New here and thrilled to have found this place.
Reply #7 - Jun 29th, 2009 at 6:55pm
 
Welcome aboard! 

If you have trouble getting Verapamil you might check out Kudzu.  I switched over from Verap to Kudzu a couple of years ago, and find I get about the same relief without the side effects.  Do a search for it on the Meds and Treatments page. 

I also strongly suggest O2.  It works quite well for most here.

At the first sign of an attack slamming an energy drink with Taurene in it can help abort an attack or at least knock it back quite a bit for many of us as well.  If caffeine keeps you awake you might not want to use it for the night time hits, but it doesn't bother me any more.  BTW, your Neuro is neurotic if he thinks coffee causes clusters!  I use strong black coffee to help abort, and even as a preventative if I drink enough of it through the day.  It doesn't kill all of them, but it does make a difference.

Please keep reading.  DON'T hesitate to ask questions!  Most here will give you a good answer.  There are some very knowledgeable people on this board.  The rest of us ride on their backs! Tongue  You will find more knowledge here than in most Drs. offices.

Jerry
Back to top
  

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
Jerry Callison  
IP Logged
 
sandie99
CH.com Hall of Famer
*****
Offline


Wish it, dream it, do
it - inspite the pain!


Posts: 11975
Finland
Gender: female
Re: New here and thrilled to have found this place.
Reply #8 - Jun 30th, 2009 at 12:59pm
 
Warm welcome to your clusterfamily, Brenda! Smiley

Wishing you PF time,
Sanna
Back to top
  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!