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Cluster Headache Help and Support >> Getting to Know Ya >> New to the Forum...but not to CH
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Message started by BlkJack-21 on Oct 22nd, 2008 at 11:55pm

Title: New to the Forum...but not to CH
Post by BlkJack-21 on Oct 22nd, 2008 at 11:55pm
Hello Everyone!

I browsed this forum at the end of my 3rd cycle and made a mental note..cause I knew that the beast would return.  :( At the time I was finally diagnosed w/CH and in line to see a neuro.

Well I'm now a week into my 4th cycle (after about a little more than a year of remission)...which will last 8 weeks (strange thing about CH isn't it...know exactly when you are going to have an attack and how long you have to endure the cycle?!?!?!)

Anyway...I found out about Red Bull on my own (and I knew that caffiene was my friend) THANK GOD for Red Bull!!

I do have 2 questions though.

I have seen many comment that O2 is a savior for abrupting these debilitating attacks! Is this something I should strongly pursue with the neuro? or see if he mentions this as an option?

And secondly...I haven't seen much about this...frankly I know that when the CH is full blown, I have to pace the house for at least 20-30 minutes before it begins to subside...I have discovered that if I lay in a certain position when the "shadows" start rearing their ugly face...I can minimize the length of the peak of the CH. My CHs are on the left...and if I lay on my stomach with my head elevated on a couple of pillows, with my right cheek on the pillow...this works.  If I lay in any other position...ie back..it gets worse and progress rapidly. And if I am awoken with a CH...forget trying to lay in bed!!

My question is has anyone else found that a certain position in bed helps alleviate this?

Title: Re: New to the Forum...but not to CH
Post by Callico on Oct 23rd, 2008 at 12:14am
On the O2, the answer is simple, YES!!!

As to position, if I am about to get hit there is no way I can lie down in ANY position, or sit, stand, or anything else that is still.  I will be moving.  The stronger the hit the more the movement.  I may just be bouncing a knee on a light level or pacing and pulling hair at a 7-8 or on the floor in a fetal position rocking and thrashing in a 9-10.

Jerry

BTW, Welcome aboard.


Title: Re: New to the Forum...but not to CH
Post by Just Plain Carl on Oct 23rd, 2008 at 12:16am
Hello Blckjack-21,
  The majority of my attacks come on after sleeping 1-2hrs.  They are usually full blown k7-k8 when they wake me up.  Pretty much too late for anything other than doin the Pace Walk.
  Too late to lay in bed in any position.
  Everyone here will tell ya that 02 is the way to go
                     good PF luck to ya
                             JPC

Title: Re: New to the Forum...but not to CH
Post by BlkJack-21 on Oct 23rd, 2008 at 1:11am
Thanks for the welcomes!

I recently had a cold and thought I was just having congestion...well tonight I had K8-K9 and could not lie down. And now it has subsided to a K1-K2..So I now know I am in the beginning of another cycle.  And I remembered this site and told myself that I would return.

The position thing...was something I discovered at the end of my last cycle and wanted to inquire about it...Since I read quite a bit of literature and couldn't find anything about it. I figured I would ask people that are going through the same thing.

As far as my CH...it is basically textbook. L side. Icepick behind the eye that radiates into the jaw and sometimes neck. Same time every evening with at least 1-3 attacks per day lasting about 8 weeks. The only thing that seems not to be textbook is that every night is a surprize...whether the attack is going to be mild one (less than say a K5 or 6) or a whopper of an attak like tonight (K8-9). Then I go through a PF period of 1 - 1 1/2 years. Went through the testing with the GP. then to ENT who then told me it was CH (after 3 years)...tried narcs, antinfllamatories, antibiotics, decongestants...which didn't help. I was in denial..mainly cause I have bad environmental allergies and always believed they were sinus infections...except that the pain was so excruciating.

Now I have come to terms with this horrible affliction..and am now in the process of finding my right mix of abruption and prevention...and am glad I found this community! Some great info to prepare me and move forward.  :)

Title: Re: New to the Forum...but not to CH
Post by maalstroom on Oct 23rd, 2008 at 3:21am
Welcome Blackjack,

Don't wait on the neurologist to offer Oxygen, persist on it yourself. It is a proven method for aborting a lot of hits.

In the past I tried lying down during a hit, as everybody always tells you to keep still. Unfortunately, it only worsened the hit and I would be sitting on the edge of a seat or the bed, rocking back and forth in no time. Or if it is a really nasty one, I am standing, pacing, and in a worst case scenario I am crawling on floors, sofa's.....

Hope you'll be painfree soon again my friend,

Pascal.

Title: Re: New to the Forum...but not to CH
Post by Skyhawk5 on Oct 24th, 2008 at 6:55am
Oxygen is the first thing I go for when I get a CH hit. Everytime. When I first heard of it from my Dr. back in 1989 I thought "How could that stop something this bad?" I'm only 33 years old I don't want to be on oxygen. People will think I'm strange or what will it do to me.

Well when it aborted a real but kicker CH for me the first time that is all it took. It IS my number 1 tool in the battle. Right now I'm in a heavy cycle and I sleep right next to my M-tank (large) with a smaller E-tank right next to it in case I run out or something happens.
I take the E-tanks in the truck with me and have aborted many hits that would have meant a couple of painful hours on the roadside without them.

O2 works for aprox. 70% of us and I think some those it doesn't just haven't used it properly. No I'm not an O2 salesman, but you'll take my O2 from my cold dead hands.

Get some, Best wishes, Don

Title: Re: New to the Forum...but not to CH
Post by BarbaraD on Oct 24th, 2008 at 8:05am
Our O2 guru will be along soon (Batch) to explain the proper use of O2 -- some of us SWEAR by it (about 70% of us). I'm a believer.

Melatonin at bedtime... Red Bull at the onset of a hit.. Just a couple of tools.

There are prevents (everyone has different ones).

But O2 O2 O2....

Hugs BD

Title: Re: New to the Forum...but not to CH
Post by BlkJack-21 on Oct 25th, 2008 at 3:42pm
Thanks everyone for the ovygen info! I will definitely bring this up when I see the neuro this week.  :)


BarbaraD wrote on Oct 24th, 2008 at 8:05am:
....Melatonin at bedtime... Red Bull at the onset of a hit.. Just a couple of tools.

There are prevents (everyone has different ones).

But O2 O2 O2....

Hugs BD


Melationin..ehh?

I am assuming that you mean that it can be helpful as a sleep aid? I usually never have problems falling asleep..other than being awoken in the middle of the night w/an attack.

Title: Re: New to the Forum...but not to CH
Post by BlkJack-21 on Oct 28th, 2008 at 7:40pm
Well I just got back from the neuro..and I found the answer about the melatonin. In fact, he was the one that suggested taking it and to take it before bedtime!

So now I have my O2 tank beside my bed, imitrex in hand and will be starting my Verapamil (480mg which seems a bit high?? 240 twice a day) and medrol dosepak tomorrow.

I really do appreciate everyone here and the info/support provided. It really did help me when talking with my doctor...being prepared and informed really made the difference!

Title: Re: New to the Forum...but not to CH
Post by thebbz on Oct 28th, 2008 at 8:24pm

Quote:
(strange thing about CH isn't it...know exactly when you are going to have an attack and how long you have to endure the cycle?!?!?!)

Be careful the beast will change to keep ya guessing. Good you have a treatment plan and aborts. It is nice to hear you got quick treatment.
Keep up the fight.
thebb
Never relax ever

Title: Re: New to the Forum...but not to CH
Post by Linda_Howell on Oct 28th, 2008 at 9:16pm

Quote:
...being prepared and informed really made the difference!



Damn skippy it does.

Now don't go away you hear?  You're gonna need us in the weeks or days to come but it does sound to me that you have your ducks in a row.


Linda

Title: Re: New to the Forum...but not to CH
Post by BlkJack-21 on Oct 28th, 2008 at 11:30pm

Linda_Howell wrote on Oct 28th, 2008 at 9:16pm:

Quote:
...being prepared and informed really made the difference!



Damn skippy it does.

Now don't go away you hear?  You're gonna need us in the weeks or days to come but it does sound to me that you have your ducks in a row.


Linda


No way would I leave!

I learned more here at the site and forums than anywhere else! :)

I had to use the O2 for a hit earlier tonight and it killed it in minutes compared to it's usual hour+. If it wasn't for here, I would probably be still in denial.

Title: Re: New to the Forum...but not to CH
Post by Bob_Johnson on Oct 29th, 2008 at 8:11am
Verap dose is on the low side (unless it's his intention to increase after a trial period at the present dose).

Headache. 2004 Nov;44(10):1013-8.  

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

   Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
===========

 
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 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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