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Newbie here!! (Read 962 times)
TJB
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Newbie here!!
Dec 14th, 2010 at 9:27pm
 
Hey!

Great site. My wife sent me a link to this site a few month ago, but just getting around to check it out. Just finished with a cycle (at least I hope its gone). I am 50 and I have my first CH in Jan. 2000, then the second in Jan. 2003 when I was diagnosed with CH. My cycles where 3 years apart 2000, 2003, 2006, then 2008 and 2010. I've taken Topomax, Zanaflex, Steroids, 02, Verapamil and probably some I can't remember. 02 hasn't worked for me in the past maybe not enough I don't remember how much I was on, it's been several years since I tried it. This last cycle I was ramped up on verapamil to 360mg, but after several weeks of steroids and verap the doc put me in the hospital for 5 days of DHE and it worked, boy was I ready for that. I just got out of the hospital on Nov. 19 2010 and I've only had one since. The lst two cycles in 2008 and 2010 i've been using Imirtrex injections as I feel one starting up thats been getting rid of them in about 8-15 mins. But yes availbility has been a problem in the past but I keep a stocked supply now. I read a story somewhere about a lady that partily injects 1/2 a dose to extend her quanitities. Guess what, it works. I find that .2 cc gets rid of my CH. So I want to my Vet. and got some 3cc vials and inject 2-3 .5 injection into the vial and use insulin syringes to draw out .2 cc's and this really helps the imitrex go farther and I feal better after a lower dose. I can say I have never missed a day of work due to CH but I own my own business with 10-15 employees and sometimes you just have to tough it out. My CH always start 2 hours after I go to sleep at night. Then after 2 weeks of nights only then I start getting another in the afternoon or evening. The cycles have always started within a week of two of the first of the year except this year when they started in Sept. and last 1 1/2 - 2 months. I great to know all you guys are out there. I look forward to helping anyway I can.
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Kevin_M
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Re: Newbie here!!
Reply #1 - Dec 14th, 2010 at 11:00pm
 
Quote:
This last cycle I was ramped up on verapamil to 360mg, but after several weeks of steroids and verap the doc put me in the hospital for 5 days of DHE ...


Sounds like the doc started things ok with the steriod (prednisone?) and verapamil, but at the end of the steroid taper, the verapamil might not have been sufficient at 360mg.  Attempting to go to 480mg next could have been an option at that point for your doc to try to test its prevention capabilities with you.  It can be stepped up higher if your doc's ok with it, some will not get results in bad times until 640 or 720mgs.  Prevention is great.


Quote:
02 hasn't worked for me in the past maybe not enough I don't remember how much I was on, it's been several years since I tried it.


It would be real good to check out the oxygen again, especially if not using a preventative.  It is also a great abortive like trex.  There is an oxygen link over on the left tabs highlighted in yellow.  With that info it has a very good success rate, trex can be conserved more as a supplement at times if needed.  It all makes this better:

Quote:
... sometimes you just have to tough it out.


Stockpiling and being prepared is great, especially since your last two episodes have been two years apart.  They can be less predictable, being prepared for anything is best.  Smiley


Welcome and glad she found us and you're here.    Smiley
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« Last Edit: Dec 14th, 2010 at 11:02pm by Kevin_M »  
 
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wimsey1
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Re: Newbie here!!
Reply #2 - Dec 15th, 2010 at 7:44am
 
Welcome aboard! I pray all continues well for you. I agree about the O2 link. If it was years ago you tried it, yes, things have changed a bit. Most only offered (and many still do) O2 at very low flow rates. So many who say it did not work for them really mean it didn't work at 7-15lpm. Yup, we know. Finding out I could, with the right equipment, hit 25-60lpm was an amazing discovery and a right good pain management technique. Hope you stay in that low cycle range. God bless. lance
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Bob Johnson
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Re: Newbie here!!
Reply #3 - Dec 15th, 2010 at 8:05am
 
Yes, the Verap. dose was low but that it obtained relief suggests that staying with it, and adjusting dose, would be worth the effort.

Suggest you print out this protocol and use it to discuss 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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JustNotRight
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since 2005 aka GingerS224


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Wilkes-Barre, Pa (USA)
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Re: Newbie here!!
Reply #4 - Dec 16th, 2010 at 6:35am
 
Welcome Aboard TJB!  This site has been a life saver for many!  Read all you can here and check the O2 page. 

Make sure you give your wife an extra special hug for sending you this site!  Smiley

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mikstudie
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Westland Mi.
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Re: Newbie here!!
Reply #5 - Dec 16th, 2010 at 9:28am
 
Welcome TJB, Yes 02 has come a long way,you may want to try again IF you get another cycle. Also IF you get another cycle try the Melatonin at bedtime works great for many night hitters.
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IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!!
 
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Dan Epps
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Re: Newbie here!!
Reply #6 - Dec 16th, 2010 at 1:52pm
 
Quote:
...the verapamil might not have been sufficient at 360mg.  Attempting to go to 480mg next could have been an option at that point for your doc to try to test its prevention capabilities with you.  It can be stepped up higher if your doc's ok with it, some will not get results in bad times until 640 or 720mgs...


Wow!  When my doc increased me from 120 to 240 several years ago, I was constipated for two weeks!

What is interesting though is the preferred use of fast-acting rather than extended release.  I will definitely bring that up to my neuro when I see him.

Sorry TJB, didn't intend to 'jack your thread but this really caught my eye.  Welcome aboard from another noob to the forum.
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