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Introducing myself (Read 1280 times)
Sinead
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Introducing myself
Feb 13th, 2010 at 3:52am
 
As you can see from my user UD I am a suffering CH.hense the ID- thebeast
I am a episodic ClsuterHeader. I was correctly diagonosed by Dr Alexander Mauskop in jan 2009.
My first episode of Ch (before i knew that i had them) was 9 yrs ago. i had a free period until last jan 2009 that is when i was diagnosed.
Well sadly they are back.
I have been having 2 attacks a week with kip 9 for 3 weeks that wake me from my sleep. My last attack was Tuesday. I went to family GP on Thursday and got  ergotamine and imitrex injectables.
I have not slept since Tuesday in fear that the beast will wake me from my sleep.
I have am taking 2 ergotamine since last night sometimes 3 before i sleep. last night i slept and the beast did not wake me. yeah!!!
I have been living with shadows all day that tonight i am so afriad to fall asleep. i took 3 ergotamine and sitting with a cup of coffee to prevent what might happen if i fall asleep.

My attacks this episode have been coming twice a week and i know that i will have to inject myself- i am very anxious to this but know when i reach that kip 9 that i will easily do it.
I know i am venting but i also want to say that i am so happy that i found this support board. i have found so much information.
I want to let all other fellow cluster-heads know that you are not alone.
I will add more to the board as i go through this and update  my experience of using the imitrex.
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Bob Johnson
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Re: Introducing myself
Reply #1 - Feb 13th, 2010 at 9:26am
 
Many years ago I was an ergot user but it's very clear that it's a weak cousin compared to the triptans class of abortives. Using 1-2mg before sleep is, as you seem to have discovered, an old, effective method for preventing night time attacks.

Compared to the pain of a CH attack, injecting Imitrex is barely worth noting. This is especailly true if you use the auto-inject system. Later on, if you want to try the reduce dosing of Imitrex, using a manual sytem, I'm sure you will be comfortable.
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Bob Johnson
 
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Guiseppi
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Re: Introducing myself
Reply #2 - Feb 13th, 2010 at 10:35am
 
Welcome to the board, you may want to look at a 2 pronged approach to treating your CH.

1: A good prevent med. A med you take daily while in cycle to reduce the number and the intensity of your hits. I use lithium. Verapamil is a very popular prevent but we use it at levels much higher then most docs are used to. Topomax is also a popular prevent. After I've been on my lithium for 2 weeks it'll block up to 70% of my attacks.

2: A good abortive. A headache starts, now what. Your first line abortive should be oxygen. I can abort an attack in less then 10 minutes with oxygen. It's cheap, safe, and no side affects! Read the oxygen info link on the left as it must be used correctly or it won't work.

Imitrex injections and nasal spray are popular, the pills not so much as they take too long to get into your system. I was using cafergot in the past, to back up my oxygen, 02 would halt the attack, cafergot would prevent a return headache for up to 12 hours. This cycle I'm chugging an energy drink when I start my oxygen, so far its preventing the return attack.

Energy drinks, Rock Star, Monster, any containing the combo of caffeine and taurine. Many can abort or at least lessen the intensity of an attack by chugging one of those at the first sign of an attack. I know a few on the board who keep open cans in the fridge when they're on cycle, that way the fizz goes away and they are easier to chug!

Welcome to the board, make yourself at home we're damned glad you found us!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Sinead
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Re: Introducing myself
Reply #3 - Feb 13th, 2010 at 11:43am
 
Thank you. I am very glad that i found you all also.
The shadows are really annoying.....they come they go....going to drop my daughter to ballet then headng to starbucks for a double expresso... Smiley
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Bob Johnson
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Re: Introducing myself
Reply #4 - Feb 13th, 2010 at 2:52pm
 
 
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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Skyhawk5
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Re: Introducing myself
Reply #5 - Feb 13th, 2010 at 4:52pm
 
CAUTION: Do NOT mix the Ergotamine and Imitrex within 24hrs. Very dangerous.

Don
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Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
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bejeeber
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Re: Introducing myself
Reply #6 - Feb 13th, 2010 at 8:07pm
 
Sinead wrote on Feb 13th, 2010 at 3:52am:
.... i know that i will have to inject myself- i am very anxious to this but know when i reach that kip 9 that i will easily do it...


For best results, you'll want to inject at the onset of the attack, not waiting for it to reach a kip 9.
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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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Sinead
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Re: Introducing myself
Reply #7 - Feb 13th, 2010 at 9:47pm
 
Don,
Smiley Thank you for the reminder. My Doctor mentioned that to me..

Had a pain free day today...just exhausted from the lack of sleep these last few days..

Sinead. Smiley
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Sinead
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Re: Introducing myself
Reply #8 - Feb 15th, 2010 at 11:25am
 
Question:
I have not had a full blown attack since I last posted. I have been taking 3 ergotamine every night to prevent an attack waking me from my sleep. However, each day i sleep and wake with the left side of my had throbbing..not enough to bring me to my knees  by far. But enough to remind me that the cluster headaches are here.

Should i continue to take the ergotamine everyday? should i stop the ergotamine (have to wait 24hrs before i take the imitrex inject-able) and wait for the full blown attack then take the Imitrex?

Not sure if i can go through each day with this shadow and small headache...how do i make this small pain...go away.......


Thanks for your support.
Sinead
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