Hello All,

I'm back again.  It's been 31-months since my last bout but I guess you know what visited last night and woke me from a horrible nightmare, only to find the nightmare is truly in Real Life.

It's only "Day 1" but I'm already walking on eggshells and feeling totally depressed knowing what the next few weeks will be like.

I'm a 48-year-old female who has suffered with this demon since I was about 16 yrs old.

I know many of you have it far worse than me and some of you are just starting to experience this journey.

My sincerest Blessings go out to you and your families.

...My kids are now 16 and 19 but when they were very young, They've told me they thought I was going to die and I scared them so bad.  Geez, I've scared myself wondering if I could take anymore and no one seeming to understand.  CH.com is a great place to start!

My best advise is to keep searching for a doctor who can understand this pain and is willing to help.  And BTW, a neurologist does NOT mean "headache specialist", like they ALL seemingly claim to be.  I've met too many neurologists who were total sadists!  --They didn't have a clue as to what I was going through...

...One A**H*L* Neurologist, still highly recommended to me, even now, expected me to lay down with my head over the side of my bed and drip Lidocaine into my right nostril and "Lay There" and wait for the pain to go away!  I knew at that moment, this doctor probably never had a tension headache much less understood what we Clusterheads go through!  ...That still cracks me up when I think about it.

What works best for me is Imitrex (50mg per headache*) and Propranolol (40mg 3-4 times per day); and until the propranolol really starts to work (about 3-5 days), my doctor prescribes Percocet which I NEED for the ones that wake me up in the middle of the night.  You know, the ones that have already gone from 'Point A' to 'Point D' without you even being aware until you're in such excruciating, suicidal pain!

I was hoping to write a little more but I'm feeling 'a friend coming to visit'.

Are any of you aware of Newer Treatments?

Sincerely,

Lisa

*Not to exceed 200mg/day because rebound headaches are worse than what you think you have now!!

Welcome Lisa, sorry you had the need to find this place but you are now amongst folks that know exactly what you're going thru.

You didn't mention O2 in your treatment regimen and EVERYONE is gonna bring that up so read the O2 tab on the left highlighted in yellow.

Dallas Denny

Hi Lisa, what Denny said. Have a look into the o2 information. It works for many of us.
All the best   :)

Yes, time to get caught up.....


 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]

Welcome to Clusterville.

O2 O2 O2.... Most of us will YELL that to you. It WORKS for about 70% of us if done RIGHT -- read the info on the left on how to do it right -- at LEAST 15 liters per minute with the RIGHT mask.

Percocet WILL cause rebounds and has proven ineffective for the most part. RED BULL or another energy drink (with caffeine and at least 1000mg of taurine) works better for most of us. Chug a can at first sign of headache.

And the trex... I take it you're taking the pills. The shots have proven (for most) to be more effective (and faster) at aborting.

Me, I'm chronic, and in the past year and a half, I've used very few abortatives except O2 (I've only refilled my cafergot once in the past two years - big change).

Hope this is a short cycle for you. But stick around and read up on the latest.

Hugs BD :-*

NEED Percocet.  My,my my.  You are on the wrong track headed for a train wreck.

             Potter