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loving this site! (Read 729 times)
cath
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I Love CH.com!


Posts: 2
loving this site!
Jun 13th, 2009 at 4:25pm
 
Hi all I am a new supporter as such to my husband of 6mo's who has fought the beast (I agree with this term) since he was 17, we are both 48 now so he has been dealing with this a long time and frankly I think he has resigned himself to never getting rid of this hell.  But I on the other hand know there is more to life than a bitch of a headache!
and that's putting it lightly I know!  Soo...lol...being the pessimist that I am I started researching...and low and behold I have found you all...and may i say I am loving and feeling for all of you and your
supporters.  I have been TALKING ABOUT THIS SITE FOR DAYS NOW.
Cliff is even getting excited...shewwww I'm glad I know I can be
pushy when i want but I love him!  Anyway Ive been telling him of all the ways you all deal with your beast, and we have talked to his
Dr., and she has called in a prescript for Lidocaine but the pharmacy
we deal with says they don't make the strength she has asked for.

I have done research and I think I am sure they make a .5 strength,
sooo they are putting the Dr off til Monday to see if they can order it.
Cliff is chronic nocturnal....geez...Im menopausal and an insomniac
so we keep each other company at night!  what a pair ...lol...anyway
Cliff was kind of excited about trying this so he got his bubble burst
when he couldn't get the script...(I told him not to wish for the headache just to see if this treatment worked....he laughed and said I had a point) I am thinking of calling around to other pharmacies to see it they carry the strength, is that a good way to go about it or are there any suggestions as to what pharmacies if anyone lives in VA
that we may take the script to??... I also told him about trying the
Red Bull... he was sceptical but we got some and he drank one when he was getting started with building pressure, but he is not sure how
many he should drink...(I told him to drink 2 and we could stay up together!) but this morning he said he think it helped because he didn't have to use the O2 he was kind of excited about that.  Anyway I could write a book to you guys!...I'll stop and if anyone has any suggestions Cliff and I would greatly appreciate it.

Cathy
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FrankF
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Simi Valley, CA, USA
Gender: male
Re: loving this site!
Reply #1 - Jun 13th, 2009 at 6:21pm
 
Hi Cathy, I did some looking around to see if 0.5% strength is made and indeed it is, but you pharmacy may need to order it. (I go through this excercise occasionally trying to get 6mg/0.5ml Imitrex in vials. I have to show them an empty vial to prove it is made after they tell me there is no such thing).

Most of the studies I have read discuss use of 4% lidocaine... quite a bit more potent than 0.5%. So, is Cliff's doctor sure 0.5% is enough?

I also notice you said Cliff uses O2. I am curious to know details about that because many people here have good results with O2 if it is used properly and if it was prescribed properly? I am on my third cycle using O2 and finally got a 15 litre per minute regulator, and a decent non-rebreather mask (bought from this site) and it has made a world of difference. I wish there was a way to use O2 though without being tethered to an O2 tank. Kind of limits you mobility.
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« Last Edit: Jun 13th, 2009 at 6:47pm by FrankF »  
 
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: loving this site!
Reply #2 - Jun 13th, 2009 at 7:22pm
 
Bless your heart for being the pushy, nosey, supporter you are and finding this site. I shudder to think how many of us men, (myself included)...just try and gut through this until they find this site. You will not find a more comprehensive knowledge base of CH ANYWHERE!  And most of us are pretty nice people to boot!

You say his hits are primarily nocturnal. Look into Melatonin, an OTC med available at vitamin and health food stores. Many can avoid or at least reduce the night time terrors by taking it 30 minutes before bed time. Is he on any good prevenattive medications? Lithium, Vreapamil, Topmax? I use lithium while on cycle, really reduces my dependency on the 02.

Please read the new "oxygen info" link on the left side of the board. Even people who were having some degree of success with oxygen are increasing its effectiveness and speed of abort by modifying how they use it. Complete with pics and definitions of terms, a good read.

Then all that's left to do is drag his butt to the board so's we can all get to know him.

Smiley To you for being a supporter...not an easy road.

Joe  (who worships his supporter of 30 years!)
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: loving this site!
Reply #3 - Jun 14th, 2009 at 7:11am
 
If your local drug store can't help you, ask them for the name of the nearest "compounding pharmacy" or ask your doc about.

These are specialty pharmacies which custom compound Rx--a return to the drug store of 100-years ago. Since they are found only in larger cities you may have to dig around.

Are you satisfied that your doc is experienced in treating complex headache disorders? Collectively, our greatest single problem is finding a doc who knows via training and experience. The majority of--even neurologists--have no useful training and little experience with headache. Good intentions can lead to years of frustration and failure. (Get back if you need assistance finding someone, if that is needful.)

Loads of material here to explore, starting with the buttons (left). The OUCH site has much material and I'd suggest a couple of items:

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
===============

 
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]
=========

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)
 
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
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.



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« Last Edit: Jun 14th, 2009 at 7:13am by Bob Johnson »  

Bob Johnson
 
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