I was diagnosed with clusters in January 2007. I had the normal referral issues and MRI's and insurance hoops to jump through. I battled the demon for 16 days every other day like clockwork (normally lasting from 45 - 65 minutes) with no medication that helped at all. My general practitioner gave me Prednisone, some drug that made me hallucinate, among others, again none of which helped at all.

My typical symptoms the 1st time around: Left side of my head and face, eye watering, nose running uncontrollably, swelling of left eye with intense eye socket pain. Completely PF to level 6 within 10 minutes. Reaching level 8 or 9 approximately 30 minutes into the attack. Then virtually PF after 45 minutes from teh start of the attack.

I literally though i was dying. I never get headaches, i've never had a migraine or anything of the sort. The the pain would be so intense i thought there is no way in hell i can take this any longer. I am not going to go into the mental state, we could be here awhile:)

By the time i finally had the opportunity to see a neurologist my clusters were gone. At least so I thought they were gone until about 10 days ago. When that feeling came back, the shadow, i literally said out loud "Dear God Please No!!!" with this sense of hopelessness.

OK, here's my concern if you will. My cluster symptoms are significantly different this time.

My typical symptoms the 2nd time around: Right side of my head and face, eye watering, nose running uncontrollably, swelling of right eye with intense eye socket pain. Completely PF to level 8 within 10 minutes. Now the biggest difference to me is that i am never PF since the onset of shadows. When i have an attack it feels like my brain is bruised and i have stayed with a level 4-6 ever since the first attack the second time around. I can sometimes get back to a level 3 (which is awesome!). As i type this i am holding steady at about a 3.5. I'd rather have intensity of 9 for 45 minutes and one day PF. Another difference my sensitivity to light. I did not have this before, and is quite annoying. Sound does not bother me.

All that being said i cannot see my neuro until Nov 6th, and i have no drugs, not that i've used any that helps anyway. Wish me luck!  
BTW: i think this Site kicks ass!



Disclaimer: I am not a doctor or medical professional, and these statements were not approved by anyone.

I will share something i do that helps me. I Do Not recommend this as a form of treatment and no doctor would recommend however, i know what it feels like to be in that much pain, cant sleep, crying doesn't help, yelling doesn't help, praying doesn't help, medications don't help...so here goes:   I get so worried with the onset of another attack here is my preparation in the evenings only, during the day i suffer, horribly i might add.

i drink quite a bit of alcohol, and go to sleep, when the beast wakes me i immediately get out of bed and take an Ambien. I know what you're thinking, however this will put me back to sleep within 10 minutes or so and ill sleep through the rest of the night.

have you tried oxygen

your recipe sounds dangerous and alcohol is an instant trigger for most of us.

daybo wrote on Oct 13^th, 2008 at 7:03pm:


The thing is, which is worse?

Waking up with a cluster headache, or, dying in your sleep from mixing alcohol with a sleeping medication? The ambien and alcohol together could depress your respitory system enough to kill you.

If you're worried about night hits, go to a store that sells supplements and vitamins and get some Melatonin. It'll help you sleep through the night and isn't expensive.

Also check out a thread in the treatment section titled Kilowatt3, they have other things you can use. They even have a regimen that has worked for some cluster sufferers.

PF wishes to you
-Mystina

Daybo,

What you are describing is not common among clusterheads, with the pain switching sides, but I have had it happen when I was episodic.  I understand your frustration with the Drs about not getting any meds that work, but that WILL TAKE TIME.  I emphasize that because it takes time to find a regimine that will work for you.  No two of us react the same way to CH or to meds.  What woks for one will not work for another.  You need to do a lot of reading here.  Print out what you think is pertinent and take it with you to your Dr.  Write down your questions and take they along too.  Not that that may do a whole lot of good, but if your Dr is any good he will find the answers or at least try.  I say he will find them, because most Drs will never see a cluster patient in their entire practice, and are not really knowledgeable. 

Bring your questions here.  We are not Drs, nor do we practice medicine, but there is a wealth of knowledge from years of experience that you can't buy at Med School.  We can point you in some directions that you can then discuss with your Dr.

For the immediate, until you can get some medical help, get some Red Bull or other energy drinks.  Keep them chilled, but only to the point that you can chug them without stopping.  At the first sign of attack slam one down.  For me, it will knock an 8 down to at least a 3 within about 5-10 mins.  Coffee also helps, but it's hard to drink it quickly enough.  I use it for the shadows you mentioned.

Talk to your GP asap and get a prescription for oxygen.  click on the button on the left, "oxygen info" and follow the directions correctly.  Print out the info you think would help the Dr make a decision and take it with you.  Oxygen is inexpensive, even if you can't get insurance coverage.  Tell your provider you are self pay and see what kind of a break they will give you.  I got mine for about the same as some were paying on co-pay.  It ALSO, and this is the most important part to me, HAS NO SIDE EFFECTS!  No meds your Dr will prrescribe can say that!

Finally, leave the alcohol alone!  that will only trigger attacks, and increase the severity of those you have coming anyway.  If you insist on continuing to mix alcohol and Ambien at least leave your next of kin info here so that we can send sympathy cards.

Jerry

While you are waiting for the appt start educating yourself. Alcohol is making the situation worse--but start by print out this whole article (link provided):


 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the best 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]

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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or