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Return after 7 years (Read 4109 times)
Shane Lawrence
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Re: Return after 7 years
Reply #25 - Dec 27th, 2010 at 1:29am
 
to bed at 9:30, reading untill lights out at 9:50

10:40: Awake. shadow looming, slowly building.

10:48: Still building, 6/10. Still in bed, start dancing. Time to get up, as the whimpering has awoken my wife who mistook it for the 3yo. Get up, start distractions and continue the dance. WTF, this is different.

10:58: still a 6-7. Have not hit the imitrex yet. WTF, this isnt normal for me. +18 minutes and not fully blossomed yet?

11:14: Secondary symptoms set in, Tearing of right eye, right sided runny nose. +34 minutes. Still dancing.

11:17: Naseua. Pain subsiding?

11:27 Pain free, still a heat-based shadow. Distractions terminated, Start toweling off. +47 minute duration.
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Shane Lawrence
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Re: Return after 7 years
Reply #26 - Dec 27th, 2010 at 1:36am
 
Change in cycle? Last Headache was 16 December, went 10 nights without, thought I was done.
This one was different in the fact that It never got bad enough to make me want the Imitrex side effects over the headache, never reached that tipping point.
It is the first cluster headache Ive ever had that didnt build to a 10.
Duration of 47 minutes could just mean I didnt abort it.

If something continues after tonight I will have to move the log off the "getting to know you" board, as you know me by now!
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: Return after 7 years
Reply #27 - Dec 27th, 2010 at 9:43am
 
Hopefully the cycle is winding down. Mine get less and less severe, and farther apart as my cycles end. I'd sure consider a look at 02, do the leg work now to get the prescription, locate a supplier and line up your gear. That way when the next cycle hits, you make a couple of phone calls and it's ready to go. Really has been a life saver for me.

And what Jimi said about the Glock.....carried it on and off duty for over 20 years, first the 9 then we moved to the .40. For a "Tupperware" piece, it's bullet proof!

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Shane Lawrence
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Re: Return after 7 years
Reply #28 - Feb 4th, 2011 at 1:49am
 
Somethings defiantly changed.

03FEB2011
Intensity: 8/10
Onset:Before 11:24PM, built to an 8 before it woke me up because Im heavily medicated for flu
Duration:+24 mins @8
Distractions worked? yes, somewhat.
side affects: right side runny nose and congestion, nausea was short lived.

Time to ask my family doc for an O2 concentrator.
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Batch
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Re: Return after 7 years
Reply #29 - Feb 4th, 2011 at 5:21am
 
Hey Shane,

Unless it's the only thing available, an oxygen concentrator is not the way to go for your oxygen therapy.  You need gaseous oxygen in big cylinders like the M-size.  They hold 3995 liters of oxygen and are good for 20 to 25 aborts.  At three hits a day/24 hrs, you'll need at least three of the M-size oxygen cylinders for a one month supply.  If you have your own oxygen regulator and no medical insurance, the three cylinders will average $45 to $90/month depending on your location.  With insurance and 20% co-pay its' $18/month...

You're also going to need a good oxygen regulator with GCA-540 fittings to mate with the M-size oxygen cylinder and a good non-rebreathing oxygen mask like the O2PTIMASK™ kit available at the CH.com store at the left for $27.50.  I have two and they're great!

The absolute minimum flow rate for oxygen therapy is 15 liters/minute.  However, if you taking heavy hits at night as your last post indicates, the minimum flow rate you need is 25 liters/minute if not higher.

Only a few of home oxygen delivery companies carry regulators capable of 25 liters/minute but they do have them capable of 15 liters/minute.  Go for the highest flow rate they can provide.  Plan on buying your own regulator.  I'll send you a pm with some suggestions.

I use the InGage™ 0 to 60 liter/minute regulator from Flotec Inc.  They make two product lines capable of these flow rates and the prices run from $140 to $190.

Take care,

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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Guiseppi
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Re: Return after 7 years
Reply #30 - Feb 4th, 2011 at 9:05am
 
What Batch said! I went with a demand regulator, pricier but if you can afford it they are the cadillac..I abort in about 6-8 minutes.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Shane Lawrence
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Re: Return after 7 years
Reply #31 - Feb 12th, 2011 at 7:57am
 
Went to bed at normal time, was up at 2am, back to sleep at by 3:15.

5:24AM: Awakened abruptly by a building HA. WhiskeyTangoFoxtrot?
5:30 built to a 6, time to get out of bed and start the dance
5:35 in my place, headphones and music going. Built to an 8.
5:45 Right eye wont open. Right sinuses running.
5:51 subsides to 6. Nausea sets in. Right eye opens again.
5:53 subsides to a 3. Nausea gone.
5:55 HA 1-2. Towell off, start my daily farm chores lol.

Max Intensity 8, duration 31 minutes.
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« Last Edit: Feb 12th, 2011 at 8:01am by Shane Lawrence »  
 
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Mike NZ
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Oxygen rocks! D3 too!


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Re: Return after 7 years
Reply #32 - Feb 12th, 2011 at 3:24pm
 
Yet another endorsement of oxygen here. I was at a restaurant yesterday, realised I was just about to get a CH, so I slipped outside, hyperventilated on oxygen and I was pain free in about 5 minutes. It really does work.

Also for night time hits people have been having sucess with melatonin, with typical doses around the 9mg mark.

Have you got a preventive, something like verapamil, lithium or topomax?
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Bob Johnson
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Re: Return after 7 years
Reply #33 - Feb 12th, 2011 at 7:24pm
 
It's common to use a Pednisone taper while waiting for the Verapamil to start working. Pred. will abort a cycle in hours but you can't use it for long periods.

Your Verap dose is low. Suggest you print out this protocol and use it to discussion options with your doc.
==

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).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Bob Johnson
 
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