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 guy with this curse; ON. Can (Read 824 times)
Randyvv
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Chatham, ON. Can
Gender: male
New guy with this curse; ON. Can
Jul 19th, 2009 at 9:26pm
 
Hi folks.  Have had these a few times before, maybe 3 cycles in the last 10 years but OMG did they hit hard about 6 weeks ago.  They have totally broken me.  My GP has perscribed the Axert, which only worked for a couple attacks then nothing.  Tried the Verapamil (120mg) but the side effects were very bad.  Have done alot of reading on this site the last couple of weeks but I didn't see anything about upper molar pain and extreme sensitivity to pressure, hot & cold.  Can anyone tell me if this is all part of CH?  This website has been very helpfull.  I find you have to go into your GP's office with alot of amunition before they realize that you will do anything it takes to find which treatment is right for you.  Thank- you CH.COM!!!!!
Randy.....Chatham, Ontario, Canada.
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: New guy with this curse; ON. Can
Reply #1 - Jul 19th, 2009 at 9:33pm
 
The symptoms you mention arise from a complex system of nerves which serve our head. People often get needless dental treatment because of this effect.

Start educating yourself:

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
-------------
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
======
It would be helpful if you would give us a list of the med/treatments you've tried, including dosing.
Back to top
  

Bob Johnson
 
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: New guy with this curse; ON. Can
Reply #2 - Jul 20th, 2009 at 12:16am
 
Yup! That nerve runs along your jaw, many people have had teeth pulled trying to alleviate the pain.

Talk to your doctor about a 2 pronged approach:

1: A good prevent medication. A med you takes daily to reduce the number and pain level of your attacks. Verapamil, lithium and topomax are great starts to discuss with the doc. Many more to read about on the meds tab but that's a good start.

2: A good abortive, the attack has started, now what? The first line abortive should be oxygen. Read the "oxygen info" link on the left, print out the details and get a prescription for oxygen. I can abort an attack in 6-8 minutes using oxygen. That's pain free in under 10 minutes. I've had CH for 31 years and oxygen is my first line abortive.

Imitrex injectables and Imitrex nasal spray are both enjoying a good success rate on the board. The injectables worked well for me but the oxygen works just as fast without the med hangover.

For now, buy a couple of energy drinks. Monster, Rock Star, any containing the combo of caffeine and taurine. When you feel an attack coming on, chug one of those down as fast as you can. Many have had success aborting or at least reducing the intensity of their attacks using these.

Bob's given you the latest and greatest in info, you're right, it's your job to educate yourself and help your doc plan your treatment. Do push HARD for the oxygen, enjoying an incredible success rate around here.

Joe
Back to top
  

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


I Love CH.com!


Posts: 5
Chatham, ON. Can
Gender: male
Re: New guy with this curse; ON. Can
Reply #3 - Jul 23rd, 2009 at 9:34pm
 
Thanks guys.  I've been reading posts on this website almost non-stop for the last few days to try and get a handle on this affliction.  After 6 weeks of 4 per day attacks, anywhere from KIP 6 to 9, most of them with the ice pick stabbing my temple, which practically drops me to my knees, I've been hit free for a week now.  Still have a constant KIP 1, sometimes KIP 2 shadow around my temple. I really don't know what to make of it since I've never had the shadowing before.  It was always full hits or nothing.  Guess I'm still in a cycle but I am petrified the big hits will come back.  My anxiety level is probably off scale about this whole thing.  Thanks for any feedback you can give.
Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: New guy with this curse; ON. Can
Reply #4 - Jul 24th, 2009 at 8:38am
 
Report of a study (from MEDSCAPE.COM):"Patients With Anxiety Disorders More Sensitive to Bodily Changes"

Sept 16 - Patients who have anxiety disorders appear to be more sensitive to bodily changes, which in turn suggests that the perception of panic attacks is reflective of central rather than peripheral responses, according to the results of a study published in the September issue of the Archives of General Psychiatry.

"Physiologic responses of patients with anxiety disorders to everyday events are poorly understood," Dr. Rudolf Hoehn-Saric and colleagues from the Johns Hopkins Medical Institutions, Baltimore, write. They compared self-reports and physiologic recordings in 26 patients with panic disorder, 40 patients with generalized anxiety disorder, and 24 nonanxious controls during daily activities.

The subjects underwent four 6-hour recording sessions during daily activities while wearing an ambulatory monitoring device. The team collected physiologic and subjective data that were recorded every 30 minutes and during subject-signaled periods of increased anxiety, tension, or panic attacks. Primary outcome measures included recordings of heart inter-beat intervals, skin conductance levels, respirations, motion, and ratings of subjective somatic symptoms and tension or anxiety.

Compared with controls, patients with anxiety disorders rated higher on psychic and somatic anxiety symptoms. Patients with anxiety disorders also rated themselves higher on disability scales and on sensitivity to body sensations. Both patients with panic disorder and those with generalized anxiety disorder experienced diminished autonomic flexibility and less precise perception of bodily states.

Patients with panic disorder had a heightened sensitivity to body sensations compared with generalized anxiety disorder patients. Autonomic arousal levels were slightly higher in patients with panic disorder, and this manifested itself in faster heart rates throughout the day.

"These findings suggest that, after having experienced anxiety attacks that are associated with strong bodily changes, patients become sensitized to such changes and may experience physiological symptoms of panic attacks..." [In effect, their bodies are acting as if there was a threatening condition even when this was not the case.]

The investigators note that the diminished autonomic flexibility found in both panic disorder and generalized anxiety disorder patients may result from dysfunctional information processing during heightened anxiety that does not discriminate between anxiety-related and neutral stimuli.

"It is important to measure physiological responses and not rely on verbal reports," Dr. Hoehn-Saric added. "A demonstration that physiological responses during anxiety attacks are milder than perceived can be reassuring to patients," he said. "However, the long-term effect of diminished physiological flexibility is unknown."

Arch Gen Psychiatry 2004;61:913-921.
________________________________________________
Imagine a person who is afraid of, for example, dogs and can experience an anxiety attack by thinking about meeting a dog or even seeing a picture of a dog. (Or, replace "dog" with your own feared thing/experience.) The anxiety is NOT being caused by a real life experience, in this situation (the thought or picture). The mental and body reactions which we call "anxiety" are a kind of habit response which are very real in their effects, however. Anxiety produces mind and body reactions which are measurable and have a real impact on how we function (and even on long term health of the body). 

The anxiety becomes an automatic response, beyond direct control of will. With this development, the person has experiences (anxiety) which are confusing or misleading--they cannot separate the real life threat from their body's automatic ("I'm in danger!") reactions. When dealing with cluster, for example, the effect of this anxiety reaction (and this is true for depression also) is that the person has increased sensitivity and reduced tolerance for pain; their sense of suffering is elevated and the capacity for effective self-treatment is reduced.

Medication can dampen the experience of anxiety but it does not unlink the reaction from the underlying thoughts or misinterpretation about the situation. ("I'm in danger"; "this will never end"; "I can' bear the pain", etc.) Cognitive therapies have been very effective (especially when combined with short term meds use) in teaching folks how to break this link.
=================
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Back to top
  

Bob Johnson
 
IP Logged
 
barry_sword
CH.com Alumnus
***
Offline


Mountain Biking Keeps
Me Sane


Posts: 3947
Bracebridge, Canada
Gender: male
Re: New guy with this curse; ON. Can
Reply #5 - Jul 29th, 2009 at 7:29am
 
Hi Randy and welcome to your new home. You are not alone anymore.
Read all you can to your left and print off the info on the o2 therapy, you will need this to teach your doc about how o2 works to abort a Clusterheadache, and I will help all I can on this also. Have to get ready for work, so will talk again soon with you.
  Barry Smiley
Back to top
  

QUIT SMOKING SEPT. 03 2005
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!