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I am a newbie (Read 1587 times)
Krazie
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I am a newbie
Dec 16th, 2009 at 1:15pm
 
I have had cluster headaches since I was about 21 years old...
    It all started after the birth of my first child, He was about 8 months old and they hit every other night on the right side of my head, for about a year this went on. I always thought they were migraines (I can only wish)..They went away for about 2 years until I had my second child and then again when she was about 10 months old every other night on the right side of my head for about a year and stopped until my third child was born...this time he was about 4 months old and again they were every other night and much stronger than the others had ever been before kip scale 9 to 10.
     I finally went to the doctor scared I might have a tumor or something of that nature, much to my relief (hahaha what relief) I was diagnosed with CH. Well at least now I knew what they were...I was able to control them with over the counter Excedrin Migraine. As long as I took two pills a day I was headache free. My doctor said if it works for you keep taking them. I was free from CH for around 3 years and just this month they are back with a vengeance. This time everyday or more a day. ranging from kip 5 to 10.
I have been to the ER at Kaiser twice now, have missed sooo much work. I was given an imitrex shot, oxygen and pain shot both trips to ER. I was sent home with Ibuprofen 800, sumatriptan pills, muscle relaxers and vicodin. Which to my disbelief none helps. I tried the Excederin migraine as well again and doesn't touch it. I went back to my doctor and he sent me home with the Sumatriptan injection, that is the only thing that works...but then after the shot I am so tired and out of it, the thought of doing anything is just so out of the question. My employer is NOT happy with me at all. When i am at work i am not able to focus and so tired. This has been going on for almost two weeks straight and I do not know if it is ever going to stop. My poor husband feels so helpless and my poor kids do not understand what is going on. Anyways Thanks for listening to me, i was beginning to feel like I was all alone in this Hell. Sad
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Bob Johnson
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Re: I am a newbie
Reply #1 - Dec 16th, 2009 at 1:42pm
 
Glad that you found us for you story is all too common: being treated by doc who have no idea of what to do!

First, avoid the ER for, as whole, they are the poorest source of good care. Second,  I assume that Kaiser can get you to a headache specialist--NOT any neurologist will do. Most have little, effective training in the complexisties of headache. Time to push for a good referral!

Then, start learning about CH and how to treat. Sending a couple of sources, then explore the buttons (left) starting with the OUCH site and the multiple internal links.
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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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PDF file below.
Use this article as a guide. If a doc isn't using the meds on this list, you may not have an up to date doc.
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After digesting some of this information, get back with your questions, etc. You will find some deep, good support from the folks here.....
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Rozen-CH_treatments.pdf (Attachment deleted)

Bob Johnson
 
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gizmo
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Re: I am a newbie
Reply #2 - Dec 16th, 2009 at 2:29pm
 
Since you are using Imitrex: have a look at the Imitrex Tip on the left.
Also check the Oxygen Info!

Good luck finding a competent neuro.

Oliver
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remission lover
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I am a newbie
Reply #3 - Dec 16th, 2009 at 2:48pm
 
Just wanted to chime in to express my condolences and well wishes. CH is annoying, painful and exhausting. I don't have kids and can't imagine holding down my household with more than my husband, the child himself. Stay strong. We are here for you now that you found us. Come anytime to vent as not many understand or relate to the frustrations of the affliction. Moral support and new abortive techniques are always waiting.
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Grandma always said "this too shall pass". But then again she didn't have ch so she didn't think to say "this too shall come again (and again) at the most inconvenient times".
 
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angela.lambert
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Re: I am a newbie
Reply #4 - Dec 16th, 2009 at 9:03pm
 
I understand your frustration.  I am so glad you found this forum.  Now ask away, the more you know the more you can have control over this beast.

Get that referral to a headache specialist.  Get the O2.  It will knock out the worst of the headaches and have no side effects.  Trying to keep up with a job and kids, looks like your gonna need all the energy you can get.

I too use imitrex injections, but only a fraction of the prescribed dosage.  You don't really need that full 6mg dose.  It can really tire you out.  Use that tip on the side bar.  I also only use imitrex when I am not at home, or if I get a breakthrough headache on the O2.

Get on a preventive.  Take Melatonin at night, drink lots and lots of water, and caffeine it up with coffee.  It is good for CH's.  Stay away from the narcotics, or pain killers, they don't work for most here and they can become addictive.  I got a Demerol shot one time at the ER, and that was the last. 

Keep us posted!

Angela
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