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
Tears of Happiness and Relief (Read 2813 times)
Jeremy Cartwright
CH.com Newbie
*
Offline


I can deal with anything,
I'm a Clusterhead.


Posts: 2
Osceola, Wisconsin, U.S.A.
Gender: male
Tears of Happiness and Relief
Mar 24th, 2010 at 12:11pm
 
I am trying to hold back the emotions right now because I have never found anyone who suffers like I do and now I have found a whole community who finally understands.

It feels so overwhelming to finally not be alone anymore.
Thank you to whoever created this site.

I'm a month into this session and it's not letting up. The Verapamil stopped working.
I might be on here often just to get out feelings and talk because the depression is really getting worse everyday.

I feel better today because I have found this site. Wink
Back to top
  
http://www.facebook.com/home.php?#!/profile.php?re  
IP Logged
 
DennisM1045
CH.com Alumnus
***
Offline


One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: Tears of Happiness and Relief
Reply #1 - Mar 24th, 2010 at 12:55pm
 
Hi, and welcome to the family.  It's about time you found us  Wink

Jeremy Cartwright wrote on Mar 24th, 2010 at 12:11pm:
I am trying to hold back the emotions right now because I have never found anyone who suffers like I do and now I have found a whole community who finally understands.

It feels so overwhelming to finally not be alone anymore.

Amazing feeling isn't it.  Just knowing you aren't insane.  You aren't imagining it.  You're not a wimp...  It changes your perspective and gives you a whole world of people that really do get it.
Quote:
Thank you to whoever created this site.

That would be DJ.  You can thank him properly by learning everything you can and reaching out to help others that come along.  It also wouldn't hurt to hit the Paypal button at the bottom of the page.  He built it for us and runs it out of the family budget.
Quote:
I'm a month into this session and it's not letting up. The Verapamil stopped working.

What dosage are you on?  What formulation are you using?

Everyone's magic dosage is different.  I'll dig up an article that describes the best way to use Verapamil and post it in a bit.

For me, the magic dosage was 400mg of regular release.
Quote:
I might be on here often just to get out feelings and talk because the depression is really getting worse everyday.

To me, this is just as important as the medical advice you can get here.  Community is not to be underated.

-Dennis-

Back to top
  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
IP Logged
 
DennisM1045
CH.com Alumnus
***
Offline


One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: Tears of Happiness and Relief
Reply #2 - Mar 24th, 2010 at 1:00pm
 
I never got significant relief from my CH until I began to follow this regime.  It just works...

Bob Johnson wrote on Mar 22nd, 2010 at 9:26pm:
=====
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.



-Dennis-
Back to top
  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
IP Logged
 
Lefty
CH.com Alumnus
***
Offline




Posts: 759
Gender: male
Re: Tears of Happiness and Relief
Reply #3 - Mar 24th, 2010 at 1:07pm
 
Welcome,

It is a great feeling to know your no longer alone.. Wink


Lefty
Back to top
  

"When money's tight and is hard to get
And your horse has also ran,
When all you have is a heap of debt
A PINT OF PLAIN IS YOUR ONLY MAN."
— Flann O'Brien
 
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: Tears of Happiness and Relief
Reply #4 - Mar 24th, 2010 at 1:07pm
 
Welcome to the board! Pretty cool to talk to people who you don't have to spend the first 10 minutes explaining WHAT CH is, it's NOT a migrain, NOT a tension headache Tylenol Won't help, it's NOT because I'm stressed, or need to lose weight or exercise or stop smoking..... Grin Grin Grin

Like Dennis said, when you get a chance, give us a more complete run down of your prevents, your abortive meds etc. The strength of this board is about 10,000 years of real time experience.

Welcome Home!

Joe
Back to top
  

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


Smile


Posts: 486
Toronto,Canada
Gender: male
Re: Tears of Happiness and Relief
Reply #5 - Mar 24th, 2010 at 1:11pm
 
Glad to hear you feel better today.

In a short period of time, time spent in this community you will feel even better! Smiley

Welcome, all the best

Iddy
Back to top
  

Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
IP Logged
 
Chad
CH.com Hall of Famer
*****
Offline




Posts: 738
Emmaus, PA
Gender: male
Re: Tears of Happiness and Relief
Reply #6 - Mar 24th, 2010 at 2:21pm
 
Welcome, we know how you feel when you find this place for the first time.  It almost gives you your life back. 

It's a great bunch of people to say the least Smiley
Back to top
  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
IP Logged
 
bonkers
CH.com Old Timer
****
Offline


What is THIS?


Posts: 308
San Diego, California
Gender: male
Re: Tears of Happiness and Relief
Reply #7 - Mar 24th, 2010 at 3:16pm
 
Hi,

We all feel better today because you found this site. You are most definitely not cursed! You have an enormous problem shared by many, many who have found this site and the relief provided by a variety of therapies you will soon be learning about. I have never in my life found a group of people so welcoming and anxious for others to learn of those therapies. Keep an open mind; many of the things that have helped others may at first seem somewhat "crackpot." You have much to learn - but it's all good stuff! I'm very happy for you.

Welcome,

Ron
Back to top
  

Excessive sorrow laughs. Excessive joy weeps.
  -Blake
 
IP Logged
 
neuropath
CH.com Veteran
***
Offline


Same Hit, Different Day


Posts: 218
Re: Tears of Happiness and Relief
Reply #8 - Mar 24th, 2010 at 3:25pm
 
Welcome!

Someone here uses a footer along the lines of: "It's like a cruise ship here. You would never buy a ticket, but once you are on it, it's actually good fun"...or something like this.

Quite true. The only difference is that we don't serve beer here; at least not when the beast is watching.

Welcome on board!
Back to top
  
 
IP Logged
 
neuropath
CH.com Veteran
***
Offline


Same Hit, Different Day


Posts: 218
Re: Tears of Happiness and Relief
Reply #9 - Mar 24th, 2010 at 3:28pm
 
One more thing; many of us concur with Bob's post on fast-acting versus sustained release Verapamil.
Back to top
  
 
IP Logged
 
anthony g
CH.com Old Timer
****
Offline


I Love CH.com!


Posts: 318
manhattan nyc
Gender: male
Re: Tears of Happiness and Relief
Reply #10 - Mar 24th, 2010 at 4:43pm
 
I know your feeling about finding this site! I found this site in december and has been a godsend for me ever since!!! I want to thank each and everyone of these guys for everything that they have given me and I know they and I will help in any way!!!!
Back to top
  
 
IP Logged
 
Linda_Howell
CH.com Moderator
CH.com Alumnus
*****
Offline


Do not feed the Moderators


Posts: 11927
Santa Maria, Ca.
Gender: female
Re: Tears of Happiness and Relief
Reply #11 - Mar 24th, 2010 at 5:34pm
 
Quote:
Tears of Happiness and Relief
Today at 9:11am     I am trying to hold back the emotions right now because I have never found anyone who suffers like I do and now I have found a whole community who finally understands.

It feels so overwhelming to finally not be alone anymore.
Thank you to whoever created this site.


I've been here almost 12 years now.  I wish I had a dollar for everytime  I've heard someone say these words.  I'd be rich, I tell ya!!!!!!! Wink

"I typed cluster headaches into a search engine and I am no longer alone in this"   or "this site has given me such a wonderful understanding of what I am going through"  or  I cryed while reading everyones story while realizing I had the same thing"  I could go on...

Welcome to the house that pain built. Can you give us a first name we can call you.    Wink

By the way....The person who built this site almost 12 years ago is Darren Johnson.  Or as we call him  Deej. A whole of folks owe their lives to him for starting this place as you have found out. 

Please DO let us know something about you.  How long you've had these, have you been diagnosed, what has been your treatment thus far...etc.   None of us are Doctors here, but between us all we have 10000's of hours of experience in dealing with this condition, with Doctors, Insurance Co.s, pharmacies & so forth.


Linda
Back to top
« Last Edit: Mar 24th, 2010 at 5:44pm by Linda_Howell »  

Hurt people.....hurt people.   Think about it.
WWW calientev8 N/A N/A  
IP Logged
 
bonkers
CH.com Old Timer
****
Offline


What is THIS?


Posts: 308
San Diego, California
Gender: male
Re: Tears of Happiness and Relief
Reply #12 - Mar 24th, 2010 at 5:43pm
 
Yah, please. It's really hard to address someone as "The Cursed One."
Back to top
  

Excessive sorrow laughs. Excessive joy weeps.
  -Blake
 
IP Logged
 
Redd
CH.com Sponsor
***
Offline




Posts: 8457
Stevens Point USA Wisconsin
Gender: female
Re: Tears of Happiness and Relief
Reply #13 - Mar 24th, 2010 at 5:47pm
 
There are a number of us from WI, so you have people in your own back yard here too.

Keep posting, and reading and asking questions and reading, and talking to us.  Oh and did I mention...reading? 

Welcom home!
Back to top
  

"The goal of life living in agreement with Nature."  ~Zeno
peggflick ma_2_2  
IP Logged
 
Jackie
CH.com Moderator
CH.com Alumnus
*****
Offline


Go For It!!!


Posts: 5903
Goshen, IN
Gender: female
Re: Tears of Happiness and Relief
Reply #14 - Mar 24th, 2010 at 8:17pm
 
Hi....welcome to the crew....lots of information here, help and support....even a kick in the pants if ya need it... Smiley  Learn all you can...ask questions if you need help.  There's always someone around.

Is there something we can call you besides cursed...  Undecided

Back to top
  
 
IP Logged
 
Jeremy Cartwright
CH.com Newbie
*
Offline


I can deal with anything,
I'm a Clusterhead.


Posts: 2
Osceola, Wisconsin, U.S.A.
Gender: male
Re: Tears of Happiness and Relief
Reply #15 - Mar 25th, 2010 at 3:06pm
 
Thank you to everyone for your welcoming words and information!

My name is Jeremy Cartwright. I am 37 and have be woken up by the beast now for 27 years. When i was 10 the doctors gave me tranqualizers to go back to sleep.

I didn't meet a doctor who didn't think I had a sinus problem until just over 5 years ago when I went to a neurologist's nurse practitioner. She had a sister with ch. I was put on Varapamil 240mg slow release. It was working. The Ch skipped me last year. I don't need to tell anyone how awesome that was. This year the beast has come back with a full vengance. 2-3 times a day and everynight around 4:15am. The Beast laughed at Varapamil and sumatriptan 100mg at times has had no effect.

I run around my yard like a lunatic, do push-ups and sit-ups trying to get my heart rate up. Super strong coffee is my life blood. I make a pot in the morning and I let it sit all day until needed. I drink it cool, right out of the pot. Excedrine is my daily vitamin.

I feel like a burden to my wife. I explain to people that it hurts so bad, she crys. I love her so much. She is one strong woman. My kids are so scared about what's going on with Daddy. That really hurts me. Emotionally.
If it wasn't for there support, my quality of life would be even worse. My work is supportive as well. I have a very understanding General Manager.

I just want it to stop. I still have hope that it can be cured. I have to keep that belief otherwise I probably would have ended it all by now.

I had heart surgery 3 years ago January. This was due to the fact that I have MARFAN'S SYNDROME.


Definition
Marfan syndrome is an inherited disorder that affects connective tissue — the fibers that provide the framework and support for your body. As a result, Marfan syndrome can involve many different body systems, including your heart and blood vessels, eyes, and skeleton. The damage caused by Marfan syndrome can be mild or severe. The most serious effects of Marfan syndrome can be life-threatening.

People with Marfan syndrome are usually tall and thin, with disproportionately long arms, legs, fingers and toes. Some experts believe Abraham Lincoln may have had Marfan syndrome. According to the National Institutes of Health, Marfan syndrome occurs in at least one person per 5,000.

Symptoms
Because Marfan syndrome can affect so many body systems, the symptoms of the disease vary greatly, even among members of the same family. Some people experience only mild effects, whereas others develop life-threatening complications. In most cases, the disease tends to worsen with age.

Marfan syndrome features may include:

Tall and slender build
Disproportionately long arms, legs, fingers and toes
A breastbone that protrudes outward or dips inward
A high, arched palate and crowded teeth
Heart murmurs
Extreme nearsightedness
A curved spine
Flat feet

I have wondered since the surgery if this connective tissue disorder could affect the hypothalamus as well?
Anybody else have Marfan's here?

Thanks again for all the love folks. I think the computer screen is starting to set me off even though I am wearing sunglasses to type all this. Yay!!!!
Back to top
  
http://www.facebook.com/home.php?#!/profile.php?re  
IP Logged
 
shaggyparasol
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 192
Portland, OR
Gender: male
Re: Tears of Happiness and Relief
Reply #16 - Mar 25th, 2010 at 7:59pm
 
Hi Jeremy.  I noticed that you are an excedrin man.  I used to be, so thought I would throw some thoughts at you.  Most of the Excedrins are aspirin, acetominaphen and caffeine.  There are a few different formulas but this is the standard and the migraine version which I used to take.  3 seemed to do the trick right at the start of an attack.

Aspirin alone, or acetaminophen alone never worked, but tea, coffee, soda did work so I figured what I really wanted was the caffeine, 65mg per excedrin tablet.  So then I tried just caffeine tablets so as not to torture my stomach further with pain relievers that were not really relieveing my pain.  1 Nodoz caffeine tablet (200 mg) seems to work for me when needed and if caught early enough.

I am a morning CH'er, so when in cycle I have a Coke, tea, or coffee around 9am which pushes my attack to the afternoon.  Around 1pm or so I either have a caffeinated drink or take a caffeine pill.  this usually works.  Sometimes I get the slamma-roo anyways somewhere in there, but I can really cut the intensity down on a lot of the cycle. 

Everyone else seems to like redbull etc.

Late night sufferers or those with bad stomachs may have a harder time with caffeine solutions. 

Welcome to our crazy club by the way! Angry

--Shaggy

Back to top
  
 
IP Logged
 
Jason
CH.com Junior
**
Offline


I Love CH.com!


Posts: 36
College Grove, TN
Gender: male
Re: Tears of Happiness and Relief
Reply #17 - Mar 25th, 2010 at 9:58pm
 
The pain sucks rocks and is unbelievable.

That said, the pain CAN be managed and usually CAN be controlled. Those two "CAN's" made all the difference for me.

Read the Oxygen information. It was/is a lifesaver for me, and while it's not free it IS cheaper, quicker and more effective than anything else I've tried in 20 years of fighting this beast.
Back to top
  
 
IP Logged
 
tom s
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Sandwich Mass
Gender: male
Re: Tears of Happiness and Relief
Reply #18 - Mar 30th, 2010 at 7:03pm
 
Welcome brother. I felt the same way a week or so ago

Tom S
Back to top
  
 
IP Logged
 
Linda_Howell
CH.com Moderator
CH.com Alumnus
*****
Offline


Do not feed the Moderators


Posts: 11927
Santa Maria, Ca.
Gender: female
Re: Tears of Happiness and Relief
Reply #19 - Mar 30th, 2010 at 7:24pm
 
Jeremy, please stop taking the excedrin.  It is probably making a hole in your gut as we speak.  Excedrin is like spit wads against a battleship anyway.

Your Verapamil doesage is very low and may be why you aren't getting any relief.  Also Imitrex tablets take far too long to take effect.  By the time they get through your blood-stream...the attack is over on it's own.  Most of us who take Imitrex use it in the injectable or nasal form for the quickest relief.

Strong coffee is good as is an energy drink...both slammed down at the very first twinge.   

Pure oxygen however is my....and so many many of us here...deliverance from the pain.  If I get to my tank fast, I can abort an attack in less than 10 mins.

I hope all of us have helped you somewhat.  Please keep asking questions. O.K.?


Linda

Back to top
  

Hurt people.....hurt people.   Think about it.
WWW calientev8 N/A N/A  
IP Logged
 
QnHeartMM
CH.com Sponsor
***
Offline


I AM a Phoenix!


Posts: 1783
San Diego, CA
Gender: female
Re: Tears of Happiness and Relief
Reply #20 - Mar 30th, 2010 at 7:50pm
 
Jeremy - your post touched me, the same way as when I found this site, some 10+ years ago, for my husband Guiseppi. It is so wonderful to have all these people to share joys and pains with this beast.

Likewise, we have a corner on the board (you may have noticed) for supporters. Please encourage your wife to visit with us about her feelings, joys, frustrations, etc. You are right, we supporters have our own pain, certainly not in the physical sense but for sure in the emotional. Sometimes we want to just give our loved one a good whack (!) but most the time we just want to make their pain go away. I thought I knew everything there was to know to help Joe, and Jackie helped me through a rough week a couple months ago with the idea of RedBull, 3-way sinus spray and Excedrin Migraine. 

We continue this path together until we find the one true way to beat this thing!

Christy
Back to top
  

Treat people with kind words.
 
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!