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Hi and thanks (Read 1012 times)
CH1969
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Hi and thanks
Jan 7th, 2011 at 8:44pm
 
Hi all

Thanks for this site. I thought I was alone! Still in the process of being diagnosed with CH but doctors are not too keen with my case and surely taking all the time they need! Until that day they come to me with a treatment, I manage this hell with Panadol every 4 hours. The pain is non stop and Panadol only helps me in shortening the episodes for 1 hour, after that hour, I have 3 hours of constant pain until I can take my next Panadol! Some days more painful than others.

Today I have learned thanks to this site that others have and continue this suffering from October to December. Thxs to this I have realised that I follow a similar pattern! And have the hope that this years CH episode will cease soon until oct 2011 (hope not, hope it goes for good). I have learned that I am not the only one with the symptoms I have been describing all the doctors i had seen for the past 2 years! I was beginning to think it was all in my mind!

Anyway, thank you for this and for giving me hope, guidance and support. I feel better just by knowing that out there someone understands what I am going through!

This week I celebrated my birthday-it was the most painful CH day of this never-ending episode that has been going on now for over 3 months.

Thank you all
Michael
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Bob Johnson
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Re: Hi and thanks
Reply #1 - Jan 7th, 2011 at 9:32pm
 
Get us your medical history: who is treating you? A specialist in headache? What meds? Has the doc done anything of give some immediate relief? Are there other medical problems of concern?

See the PDF file below and digest the long article.
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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]
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Bob Johnson
 
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bejeeber
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Re: Hi and thanks
Reply #2 - Jan 7th, 2011 at 9:50pm
 
Well that sounds like a lousy 42nd birthday!  Angry

If it does turn out that CH is officially your brand of extreme head pain hell there's a lot of info here that has helped a lot of people find relief, some of it stuff that none of those jerk doctors who are stalling you would know about, so you'd be well advised to hang around and soak it in.  Cool
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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wimsey1
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Re: Hi and thanks
Reply #3 - Jan 8th, 2011 at 8:28am
 
Quote:
Anyway, thank you for this and for giving me hope, guidance and support. I feel better just by knowing that out there someone understands what I am going through!


It's what the good people on this site do best!  Wink
Blessings. lance
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CH1969
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Reply #4 - Jan 8th, 2011 at 6:30pm
 
Thank you all for your replies! Today it has been terrible, out of action practically all day and now that I am slightly better, it's bedtime my worst nightmare. Really exhausted and looking forward to some kind of treatment. I have noted down names of the medication mentioned here and will inform my GP next week. I have no quality of life and need to sort this out soon.

Bob wanted to know my medical history, basically it will only mention that I have seen doctors, and been to a & e with a headache! Was just Given paracetamol and in some cases to be taken together with ibuprofen! I have to admit that in all occasions I had been treated well but at the end of the day, I left with the same problem I had come to see them! No solution whatsoever the only difference is that after all this time, I am more exhausted!

I reside in Gibraltar, so the only help I might be able to receive from you guys would be advise and tips on how to improve my life. Additionally, this website is a window for me to learn, understand and express myself. I guess it is always better to be able to share a problem rather than confront it alone.

Thank you all again for your replies.

Michael
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AussieBrian
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Re: Hi and thanks
Reply #5 - Jan 8th, 2011 at 6:33pm
 
G'day Michael, and I'm presuming your CH has been positively diagnosed by a medical professional, otherwise just let us know and we'll help you get it sorted out. (Very important!)

If you're getting any help from the Panadol you could try washing it down with a mug of goodly strong, hot coffee. You may find it works quicker and even a little better.

There's another prescription product, Panadiene forte, which is stronger again but contains codiene so be careful with your tummy.

Good luck and welcome home.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Bob Johnson
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Re: Hi and thanks
Reply #6 - Jan 8th, 2011 at 7:58pm
 
Knowing where you live is important to tailoring a response to your local resources.

Contact the UK support group and see if they have any ideas about sources of treatment:

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=====
Ask your local docs if they know of anyone with experience/training in headache. The lack of skill & knowledge is the single greatest barrier to getting good treatment--but worth asking, asking, asking.

European Cluster Guidelines

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(This may no longer work. If so, then print out the PDF file, below, as a fair presentation of what is used in the U.S.
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Bob Johnson
 
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BigCoffinHunter
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Re: Hi and thanks
Reply #7 - Jan 9th, 2011 at 12:08am
 
If you have CH, paracetamol is worthless.  You need O2 and Imitrex or a triptan to abort, and a good preventative (Verapamil, Topamax, or Lithium).

Read all the links, peruse the message board, and you'll see what works.

I'm sorry you have these things.
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