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
22 years as a 'Clusterhead'. (Read 1486 times)
NicholasJ
CH.com Newbie
*
Offline


I will survive this!


Posts: 1
Port Washington, WI
Gender: male
22 years as a 'Clusterhead'.
May 8th, 2016 at 7:12pm
 
I landed on your site a few days ago and immediately registered myself. This place is great! Thank you!!!

I am 57 years old and I've been living with this beast for 22 years. Like many of you, I didn't know what was happening to me at first. Sinus headaches? Infections? Allergies? Smoking too much pot? Did I have a brain tumor? Was I going to have a stroke for Christ's sake!? All of these questions would run through my mind as I bashed my head against the floor at three o'clock in the morning. Every morning. Day after day after day. Then...like magic...the agony would suddenly stop and life would return to normal. Until the next autumn or spring when the sh!t would hit the fan again. General Practitioners were clueless. They'd poke around for a while, scratch their heads and prescribe painkillers. Nose & Throat specialists were clueless. They'd probe around in my nostrils. Mutter "hmm" a couple times, scratch their heads and prescribe other useless medications. Finally, I consulted with the one medical expert I thought would have some answers. My Mother, the Registered Nurse. She of course couldn't figure anything out either until one day, she read an article in the newspaper describing an affliction known as "Cluster Headache". She clipped the article and sent it to me with a note stating, "This sounds like you!" As I read through the symptoms description I began to tremble as I realized that this is exactly what I'm experiencing! Finally, something I can wrap my head around (pun COMPLETELY intended!) and possibly get some relief. Got with a new doctor, told him EXACTLY what I had, and found that he was familiar with the ailment. The solution he recommended was 360mg daily verapamil as a preventive measure, and 8lpm O2 to kill the headaches whenever they occurred. I immediately started the verapamil and the oxygen was delivered to my home a few days later in a big 'M' tank with a regular medicinal mask. At the first sign of an attack that night, I snorted up the oxygen and was nearly brought to tears as the attack was stopped in its tracks. I cannot describe the euphoria I felt when I knew I finally had a solution! It was like a whole new kind of high. That cycle ended in May of 2000 and for the next 12(!) years I was free! I thought it was over, done, kaput!!

Well...not exactly.

In September of 2012, right around the time our guys were being murdered in Benghazi, our mutual little friend came back into my life. This time with a few more surprises for me. Not only would he wake me up in the middle of the night, but he also enjoyed pounding on me during working hours just so he could laugh at me as I desperately tried to hide from my associates. He would also love to hit me with kip8 or 9 as I drove down the expressway in rush hour traffic. Boy! Was that fun!!! I had his number though. Back to the doc for more verapamil and O2 and his visit was ended finally in February 2013. He crawled away in partial defeat, but came back for a return engagement in March 2014 with more viscous attacks and a couple trips to the ER.

More verapamil and O2 knocked him down again by May of that year.

This year, he's reared himself again for another spring session and we've just recently completed our annual battle. Life, for now, has again returned to normal.

I'm telling you all of this as a means of introducing myself, and to let you know what I've learned from your wonderful site. Now that I'm in remission, I'm going to continue with the verapamil at 360mg per day in stead of quitting it because the cycle has ended. Doc and I have decided that I should stick with it forever in order to try and prevent our friend's uninvited return. I've also found, with your help and guidance, that I've been using the oxygen all wrong. I'm breathing through the same kind of medicinal mask when I should get my hands on a non-rebreathable rig and also increase the flowrate from 8lpm to something like 15 or 25. With these new weapons in my armory, and about half a dozen portable E-tanks of O2, I'll be more than ready to fight this little bastard if/when he makes his appearance again. I will also consult with the doc about the D3 regiment that has been discussed here. That sounds like a nice secret weapon to spring on my little friend and maybe throw him a surprise or two in the future! Cool!!!

I've resigned myself to the fact that, at least for now, there is no cure for this thing. But, with my experiences over the years, and your added vast amounts of knowlege and experiences, I think I have a handle on it and can live a normal life in spite of, and defiance toward, the little monster we all must live with. I intend to drop by and visit with you guys from time to time. Just to catch up and see what's new. But for now, as I am in remission once again, I'd like to forget this thing for a while. But I will never forget the people here.

God Bless you all. Stay well. And fight the fight!

Nicholas
Back to top
  

We are living on an immense ball of molten iron, hurtling through a vacuum at incomprehensible speeds around a gargantuan mass of exploding hydrogen. What could possibly go wrong?
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3851
Cairns, Qld, Australia
Gender: male
Re: 22 years as a 'Clusterhead'.
Reply #1 - May 8th, 2016 at 10:31pm
 
NicholasJ wrote on May 8th, 2016 at 7:12pm:
... I think I have a handle on it and can live a normal life in spite of, and defiance toward, the little monster we all must live with.

That says it all, mate. Travel safely and our door is always open.
Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: 22 years as a 'Clusterhead'.
Reply #2 - May 9th, 2016 at 5:44pm
 
Hi Nicholas and welcome,
Do try the vitamin D regimen as opposed to the Verapamil! It's a much more healthier option in more ways than one, and has a good record at keeping the beast at bay in us Spring and Fall clusterheads. Myself included.

Hoppy
Back to top
« Last Edit: May 9th, 2016 at 5:53pm by Hoppy »  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: 22 years as a 'Clusterhead'.
Reply #3 - May 10th, 2016 at 3:07pm
 
Delightful that you finally found some relief! While I have no reservations about usisng oxygen, two issues to consider.

First, its effective life is shorter than for some other abortives and you may find yourself using it more often. There are other abortives (pill & injectioln) which are fast acting and with a longer, effective, life. Secoind, is the issue of lugging tanks, etc. when you are outside your home.

See the PDF article, below.

My personal favorite is not only fast acting but the least expensive abortive around. Your doc can give you a sample and 1-2 uses will reveal whether it works for you.
====================
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

---------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====
Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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!