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
Recently Diagnosed Husband (Read 2386 times)
Mrs.Hudson
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 1
Recently Diagnosed Husband
Nov 12th, 2013 at 11:19am
 
I have been in a relationship with a recently diagnosed CH suffer for ten years and this site is like a godsend!!!

My husband has been suffering this horrible pain for more than ten years, we have gone to doctor after doctor and countless trips to the ER, all for years of trying every pain, and sinus medication made to only sometimes have temporary relief.
    I have been supporting my husband through this ordeal with no idea that this condition was so severe, I have stayed awake with him on countless night with no clue how to help, sometimes I can massage the lower neck, shoulder blade, and work the massive knots of this fluid to release its grip of him, now reading other posts we will try some of the other therapies and let you know what helps.
   We just recently got referred to a neurologist and he was diagnosed with this horrific condition, after reading the symptoms and stories of others I knew that these CH were exactly the culprit that was causing this intense pain. It is nearly a miracle that we finally have a diagnosis that seems correct and even though there is no known cure we hope with everything in us that these medications keep the "hot poker" at bay.
     The attacks have had a seasonal pattern of getting worse, although the shadow seems to remain all year long the "Hot Poker" only seems to come in the spring and fall. Those times of the year can push your relationship with the affected to its breaking point. Although for us this horrific condition somehow has brought us closer together, in his worst times I just do whatever he asks and simply just massage his neck and shoulder quietly or bring him water, or sit quietly and watch the man I love suffer more than I have seen any other suffer and I work in the medical field.
     I hope that these therapies will give us our LIFE back because for him more than me but for all family and loved ones of CH suffers, when these "cluster periods" come that time is not Life it is a living hell, going weeks at a time with two or less hours of sleep can really push a person and he is totally drained of energy and it affects his ability to work and makes him feel like just ending this living hell, and relive the ones around him of the worry and coping with his aggressiveness during the attacks.

     Thank you all so much for creating this site is it really a godsend that we have finally caught the culprit of this pain.

Mr. & Mrs.Hudson
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Recently Diagnosed Husband
Reply #1 - Nov 12th, 2013 at 11:53am
 
Welcome to the board and bless you for taking the time to do the research to find this board. My wife found the original streaming CH board many years ago and saved my sanity!

First off, are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, have your hubby try and chug it down as fast as he can when he feels an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, for CH’ers, knowledge is our best ally. We’ll help the two of you all we can.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: Recently Diagnosed Husband
Reply #2 - Nov 12th, 2013 at 6:24pm
 
Hi Mr & Mrs Hudson, and welcome.
You said you massage the back of his neck. I've found using
ice blocks wrapped in a cloth and soak the neck and the top
of his head can abort an attack within 20mins.

Hoppy.
Back to top
  
 
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!