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Cluster Headache Help and Support >> Getting to Know Ya >> New to area-
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Message started by Becky V on Mar 15th, 2009 at 11:14am

Title: New to area-
Post by Becky V on Mar 15th, 2009 at 11:14am
Hi, my name is Becky. I am 34 and have had CH since I was 17. I am an episiodic sufferer. I had a remission of over a year and have been hit again for about a month now. I am at the stage of depression right now. I feel like it is killing me. I got out of being used to them after such a blessed break. My beast usually hits at night but can come whenever. O2 is my best friend. I was laid off in September so no insurance to get any meds. This time around just feels worse- I have vommited twice which has never hapened before. But the pain lasted so long that I guess my body just reacted to it. My face is permanintly swollen on the right side where my pain comes from. Always in the rt eye. I am feeling sorry for myself and am so tired of this leading my life. But it does. My life is the headache and that sucks. I know that I am not alone here, but it sure feels like it. How do we survive? My head is so sore from all the headaches that I have had that it hurts to put the ice on my head when I actually have a real headache. I am doing the water thing- thats all I drink now is water, and all the time. I do the Melatonin every night, I am trying the flonaise, and the energy drink, I think the energy drink helps, but who can sleep on an energy drink! I am going on very little sleep and a constantly sore head and feeling sorry for myself this is a bad mix! I hate this I am not a victom type person and hate complaining about medical things and yet thats what I am doing. I guess I just need someone who can relate to me to talk to. Normal people think we are lieing- my mother is an ER Nurse and untill she experienced my headaches for the first time when I was 17, thought that anyone coming to the ER for headaches were drug seekers. Thats how most of them think. I have not gone to the ER for mine because I know that it will cost an arm and a leg and probably by the time I got there it would be gone. Besides, what can they do? Sorry for my cry baby rant, I guess I just needed to vent. :'(

Title: Re: New to area-
Post by Bob_Johnson on Mar 15th, 2009 at 12:22pm
Becky, it would help us to help you if you would give some medical history: what treatments have you tried?, what has worked?, seeing a good headache doc now?

If you are not up to date on current therapies:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
============  And see whole article:

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article 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]

Title: Re: New to area-
Post by coach_bill on Mar 15th, 2009 at 4:22pm
TIMEOUT BLUE!!!

             Listen, You just have to get your weapons in check and take the fight to the beast, not the other way around. Im sure your sufferin bad, We all go thourgh this, so lets do it togather. Look your a member of team cluster now, no more crying or venting, just find ways to figure out how to end your cycle.

                               Now get back in there kid, Coach Bill

Title: Re: New to area-
Post by Steambug on Mar 15th, 2009 at 4:24pm
hi Becky

I just came back after about 6 months away, welcome. I'm 33 and am in the UK.

Title: Re: New to area-
Post by Guiseppi on Mar 15th, 2009 at 11:48pm
You're in a crappy place right now Becky. Damned glad you found us. Remember, it does end.

Read the links Bob gave you, they're the most current info on on CH, and in this CH business, knowledge is power. Glad you found us, really hoping we can help you.

Joe

Title: Re: New to area-
Post by Artonio on Mar 15th, 2009 at 11:59pm
Hi Becky... welcome. You've been given some good advice so far. Feel free to vent to your hearts content. We're here.

I hope this cycle ends for you soon... many of us know how the sleep deprivation and constant pain can effect our moods.

Just remember this too shall pass. In the meantime gather up your arsenal against the beast and never give up or give in.

with warm regards,
Tony

Title: Re: New to area-
Post by DennisM1045 on Mar 16th, 2009 at 12:35pm
Hi Becky,

Sorry the beast is giving you such a rough time.  It sucks but you will live.  Don't ever forget that.

In the mean time, check out the non-med page at OUCH-US here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

There are lots of tricks to try.  I hope one of them works for you.

Vent all you want...

-Dennis-

Title: Re: New to area-
Post by Iddy on Mar 16th, 2009 at 3:51pm
Hi Becky,jump on the boat. We all are sharing in this fucked up voyage. Lots of good info lots of caring people.

All the best in your struggle. All the best in your victory against the Beast.

Iddy  

Title: Re: New to area-
Post by BarbaraD on Mar 16th, 2009 at 5:41pm
Hi Becky,
Welcome to Clusterville.... go ahead vent away. We DO know how you feel. Hope this is a short cycle for you.

And you WILL survive. Don't cha know -- we're the tuffest people in the world.

How high a rate are you using with the O2?  25 liters a minute works great for a lot of us. And be sure you're using a non-rebreather mask. That's been a lifesaver to most of us (about 70%).

Stick around here - we're a really good bunch of idiots and we'll get you out of your grumps ...

Hugs BD :-*

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