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Topic: Please Read-Has Broken Cycle (Read 1131 times) |
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jefferator
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Please Read-Has Broken Cycle
« on: May 15th, 2005, 10:04am » |
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This is my first post. I am a male 43 and 20 year CH sufferer. I have seen several headache and pain management sufferers without much success, but the following broke a cycle for me and when I shared it with another CH'er, broke his too. You are all familiar with rebounding Im sure. Well rather than taking NSAID's, my doctor prescribed a timed release anti-inflammatory, Naproxen EC time delayed. (its either Naprosyn or Naprolyn. Careful, I cant remember which, and one is time released and the other is just really strong Alleve and will cause rebound--you want the timed released). The theory is that by taking Verapamil (dialator), along side a timed released slow and steady anti-inflammatory, you will regulate the two and reach a balance enough to cure the trauma to the temple vein and break a cycle. Feel free to post to me with questions. The lack of surging anti-inflammatory use causing rebounding, and instead, slow steady anti-inflammatory makes sense. Thanks.
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LeLimey
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Re: Please Read-Has Broken Cycle
« Reply #1 on: May 15th, 2005, 10:14am » |
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How much verapamil are you on Jeff and how much of the naproxen do you take at a time??
Thanks for sharing what works for you, I used to use Naproxen alot in combo with another painkiller for a crappy bone disease I have but I've been trying to avoid taking it for ages for fear of rebounds from them.
Does the other ch'er you know take the same sort of doses as you or different?
I'm glad you've found something that works for you oh.. and by the way.. nice to meet you!
Take care
Helen
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #2 on: May 15th, 2005, 10:34am » |
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The timed release Naproxen is twice a day, once in the morning and once at night 500 milligrams #60, and the Verapamil is 4 times a day. unfortunately, I dont have a Verap bottle to reference, but I think its the standard. Very important to take like clockwork. I did it at 10, 2 6 and 10. Deviations from schedule affect effectiveness. By the way, its Naprosyn, not Naprolen and the timed released nature is what is supposed to avoid the rebound. Thanks.
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LeLimey
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Re: Please Read-Has Broken Cycle
« Reply #3 on: May 15th, 2005, 10:53am » |
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Cartainly sounds like something that would be worth discussing with my neuro in July.. although I think I'm on a lot higher a verap does than that. By my reckoning you are on 4 x 80 mg tabs a day which makes it approx 320mg? I'm assuming (yes I know thats dodgy!!) that its the 80mg tabs you are on? Can you check sometime and let me know for sure? It would be VERY nice to be able to take some pain killers for my achy bones again instead of just relying on my TENS machine!
Thanks alot!
Helen
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #4 on: May 15th, 2005, 11:07am » |
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I sure will. Also, as a very important addition, the timed release Naproxen comes in different durations. 8 hour, 10 hr and 12 hour. It is best to get the 12 hour if you take it twice a day, so that you have constant regulation of the vein. Anything less is less effective. By balancing the constriction and inflammation, the cocktail of the two works best. Jeff
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sandie99
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Re: Please Read-Has Broken Cycle
« Reply #5 on: May 15th, 2005, 12:07pm » |
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jefferator,
I'm glad that you've found something which works for ya! 
I've found relief with verpamil... 600mg/day and ch stays away... 
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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forgetfulnot
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Re: Please Read-Has Broken Cycle
« Reply #6 on: May 15th, 2005, 5:09pm » |
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Quote:| The theory is that by taking Verapamil (dialator) |
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Hmmmmmmm, I never heard that verapamil is a vasodilator. I have read that it relaxes the smooth muscles in the cardiovascular system, I.E. keeps them from pulsating.
The use of NSAIDS for cluster headache whether fast release or extended release has shown no evidence of relieving Cluster Headache, verapamil has.
Lee
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Tom
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Re: Please Read-Has Broken Cycle
« Reply #7 on: May 15th, 2005, 6:48pm » |
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- Naproxen is a NSAID and it's useless for CH
- verapamil certainly is a vasodilator
http://www.fpnotebook.com/CV223.htm
verapamil: Precautions: Transient Hypotension - Results from peripheral vasodilation
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| « Last Edit: May 16th, 2005, 1:15pm by Tom » |
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Thomas/Munich
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forgetfulnot
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Re: Please Read-Has Broken Cycle
« Reply #8 on: May 15th, 2005, 9:40pm » |
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on May 15th, 2005, 6:48pm, Tom wrote:- Naproxen is a NSAID and it's useless for CH
- verapamil certainly is a vasodilator
(http://www.fpnotebook.com/CV223.htm: verapamil: Precautions: Transient Hypotension - Results from peripheral vasodilation) |
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Your link don't work. Try again. How could a drug that helps many clusterheads be a vasodilator I.E. alcohol?
Lee
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Bob P
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Re: Please Read-Has Broken Cycle
« Reply #9 on: May 16th, 2005, 9:26am » |
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Quote:| How could a drug that helps many clusterheads be a vasodilator I.E. alcohol? |
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There's a whole lot more to ch than vascular dialation. When not in cycle we drink alcohol and get nothing more than a red face.
I think one needs to look at the other facets of ch. Substance P and in particular CGRP. These are what makes ch so painful.
Is the vascular action of verap only secondary and it's primary function controlling the release of CGRP? Is this why it's helpful to clusterheads?
The triptans are vasoconstrictors but they also act on CGRP (I think I read that somewhere).
A look at Floridian's post on CGRP sheds light on this. Control the release of CGRP and no matter what the blood vessels are doing, it doesn't hurt.
Quote:New targets in the acute treatment of headache.
Goadsby PJ.
Headache Group, Institute of Neurology and The National Hospital for Neurology and Neurosurgery, London, UK.
PURPOSE OF REVIEW: The aim of this article is to review recently identified targets for the acute treatment of primary headache disorders. RECENT FINDINGS: Calcitonin gene-related peptide (CGRP) receptor blockade has been shown to be an effective acute anti-migraine strategy and is a non-vasoconstrictor in terms of the mechanism of action. It is likely that direct blockade of CGRP release by inhibition of trigeminal nerves would be similarly effective in both migraine and cluster headache. Options for acute treatment based on preclinical work and initial clinical studies include: serotonin 5HT1F and 5HT1D receptor agonists, glutamate excitatory amino acid receptor antagonists, nitric oxide synthase inhibitors and adenosine A1 receptor agonists. Proof of principle studies with octreotide, a somatostatin receptor agonist, demonstrated it to be better than placebo in the acute treatment of cluster headache but not in the acute management of migraine. SUMMARY: The prospect of a non-vasoconstrictor acute migraine therapy offers a real opportunity to patients, and perhaps more importantly, provides a therapeutic rationale to plant migraine and cluster headache firmly in the brain as neurological problems.
PMID: 15891413 [PubMed - in process] |
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Both Naprelan and Naproxen EC are naproxen sodium (Alleve). It's just the extended release version with the EC.
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| « Last Edit: May 16th, 2005, 2:27pm by Bob P » |
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #10 on: May 16th, 2005, 4:40pm » |
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Lee and Tom,
Beg to differ but timed released Naproxen along with Verapamil has been proven to help clusters per Dr Marc Sharfman, Orlando Fla. Not sure I can fully accurately reflect the medical mahambajambo, but the way it was explained to me is basically the vein in my left temple constricts at onset and then since the blood cant flow through it explodes...kip 10. By regulating the vein with an anti-constrictor/dialator and regulating the explosion/inflammation with a timed release anti-inflammatory, the trauma to the vein ceases and cycle broken easier. This makes sense to me. Important not to take regular NSAID's due to surge effect which causes the rebound. The steady constant stream of anti-inflammatory timed released along with the Verapamil is the new treatment. I respect your skepticism, but it has worked for 2 people, and the guy I told this to, who went to his doctor was on a viscous cycle for 3 months...he said it broke virtually immediately and was calling insisting to take me to dinner, make a contribution in my name, etc...no fooling. I will say that the next cycle wasnt as effective, in that it didnt break it immediately, but definitely eased the severity. Feel free to write back if I have left out specifics necessary.
Jeff
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Tom
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Re: Please Read-Has Broken Cycle
« Reply #11 on: May 16th, 2005, 5:57pm » |
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Sorry Jeff,
but the concept of Dr. Sharfmann to treat CH with slowly released naproxen is more than puzzling, really.
And the theory of the constricted temple vein at the onset of CH...even more puzzling. I would really appreciate a Dr. Sharfman's slight hint from where he drew his very special pathophysiology of the CH attack...
Anyhow, Goadsby delivered a hint that the vascular factor could be much less important in CH than other people believe:
Brain 2002 May;125(Pt 5):976-84
Persistence of attacks of cluster headache after trigeminal nerve root section.
Matharu MS, Goadsby PJ.
Headache Group, Institute of Neurology, University College London, UK.
Cluster headache is a strictly unilateral headache that occurs in association with cranial autonomic features. We report a patient with a trigeminal nerve section who continued to have attacks. A 59-year-old man described a 14-year history of left-sided episodes of excruciating pain centred on the retro-orbital and orbital regions. These episodes lasted 1-4 h, recurring 2-3 times daily. The attacks were associated with ipsilateral ptosis, conjunctival injection, lacrimation, rhinorrhoea and facial flushing. From 1986 to 1988, he had trials of medications without any benefit. In February 1988, he had complete surgical section of the left trigeminal sensory root that shortened the attacks in length for 1 month without change in their frequency or character. In April 1988, he had further surgical exploration and the root was found to be completely excised; post-operatively, there was no change in the symptoms. From 1988 to 1999, he had a number of medications, including verapamil and indomethacin, all of which were ineffective. Prednisolone 30 mg orally daily rendered the patient completely pain free. Sumatriptan 100 mg orally and 6 mg subcutaneously aborted the attack after approximately 45 and 15 min, respectively. He was completely anaesthetic over the entire left trigeminal distribution. Left corneal reflex was absent. Motor function of the left trigeminal nerve was preserved. Neurological and physical examination was otherwise normal. MRI scan showed a marked reduction in the calibre of the left trigeminal nerve from the nerve root exit zone in the pons to Meckel's cave. An ECG-gated three-dimensional multislab MRI inflow angiogram was performed. No dilatation was observed in the left internal carotid artery during the cluster attack. Blink reflexes were elicited with a standard electrode and stimulus. Stimulation of the left supraorbital nerve produced neither ipsilateral nor contralateral blink reflex response. Stimulation of the right supraorbital nerve produced an ipsilateral response with a mean R2 onset latency of 36 ms and a contralateral response with a mean R2 onset latency of 32 ms. Lack of ipsilateral vessel dilatation makes the role of vascular factors in the initiation of cluster attacks questionable. With complete section of the left trigeminal sensory root the brain would perceive neither vasodilatation nor a peripheral neural inflammatory process; however, the patient continued to have an excellent response to sumatriptan. The case illustrates that cluster headache may be generated primarily from within the brain, and that triptans may have anti-headache effects through an entirely central mechanism.
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Bob P
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Re: Please Read-Has Broken Cycle
« Reply #12 on: May 16th, 2005, 5:59pm » |
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I'll let you know since I am already on 360mg verap a day and I am stopping at the drug store on the way home from work tonight. I'll pick up some Naproxen EC at that time and give you a report on it's effectivness (hope I get this one right, does anyone know if cafergot interferes with naproxen ).
modified to add smiley
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| « Last Edit: May 16th, 2005, 6:00pm by Bob P » |
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #13 on: May 16th, 2005, 6:11pm » |
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Please do let me know Bob P. Nothing in the world could make me happier than helping give relief to fellow sufferers of this sick freagin abyss we share. Try and get the one that lasts 12 hours and take them at exactly the same time...say 10 am and 10pm. I always tried to have it in me at least an hour before I went to bed. I have done it and shared it with one and only one other...and its two for two.
Jeff
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #14 on: May 16th, 2005, 6:12pm » |
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Bob...you know that the Naproxen 500 EC timed release is script only and not over the counter right?
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Bob P
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Re: Please Read-Has Broken Cycle
« Reply #16 on: May 16th, 2005, 6:16pm » |
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Yeah. It's kinda like Motrin. Motrin 800 is prescription but you can buy motrin 200's over the counter and take 4 of them.
I'll see what naproxen they have over the counter and see if I can come up with someting that equals the 500 and is time released. I think a lot of it is. That's why Alleve adds say a couple of pills last all day. I think the EC stands for "enteric coated".
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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Tom
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Re: Please Read-Has Broken Cycle
« Reply #17 on: May 16th, 2005, 6:18pm » |
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Hi Lee,
verapamil definitely i s a vasodilator:
http://www.fpnotebook.com/CV223.htm
verapamil: Precautions: Transient Hypotension - Results from peripheral vasodilation
----------------------------------------
http://www.emedicine.com/emerg/topic75.htm
Peripheral vasodilatation
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And I don't believe that any effect caused by verapamil on CH is based on any of its vascular effects - I rather believe that the calcium channel blockade caused by verapamil here inhibits the central generation and transmission of pain:
http://www.painjournal.net/new_page_3.htm
concerning pain:
A fundamental property of nerve cells is that they fire when they reach threshold for their action potential. This is largely driven by sodium ions, although calcium also plays a strong role in permitting a state of readiness for repetitive firing.
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Thomas
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #18 on: May 16th, 2005, 6:20pm » |
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BOB__NO!!! Do NOT get an over the counter Alleve. Call you physician and get the Naprosyn
Naproxen 500EC timed release. If you take really strong Alleve and not what I described, you will likely rebound hard. I am not aware of any OTC timed released naproxens, and I STRONGLY recommend you get the prescription from your doctor.
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Bob P
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Re: Please Read-Has Broken Cycle
« Reply #19 on: May 16th, 2005, 6:33pm » |
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Jeff,
I'm pluggin Naproxen, Naprosyn and Alleve into the RX list dictionary and they are all coming up the same. Naprosyn is naproxen is alleve.
The chemical names for naproxen (naprosyn) and naproxen sodium are ( S)- 6- methoxy- a - methyl- 2- naphthaleneacetic acid and ( S)- 6- methoxy- a - methyl- 2- naphthaleneacetic acid, sodium salt, respectively.
Naprosyn = ( S)- 6- methoxy- a - methyl- 2- naphthaleneacetic acid
Alleve = ( S)- 6- methoxy- a - methyl- 2- naphthaleneacetic acid, sodium salt
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| « Last Edit: May 16th, 2005, 6:42pm by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
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E-Double
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Re: Please Read-Has Broken Cycle
« Reply #20 on: May 16th, 2005, 6:57pm » |
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I'm glad you find relief.
PERIOD!!!
The one thing that remains consistent in all the research regarding HA treatment is the use of NSAID as a diagnostic tool to rule out certain HA.
If HA responds to NSAID whether it be at low or High dose then it is not CH according to what is published.....
There are HA that mimic CH yet are different in subtle ways.
Unless it is the verapamil doing the trick??
Ya have to consider that one....I personally don't care (FEEL GOOD!!!)
The reason I say this is also because I have a few HA types.......Primary being CH. I take indomethacin (a NSAID) which does nothing for the CH but it does keep another HA under control. I also take verapamil for the CH
Anyway..I'm happy something works for ya!
I also know that many go misdiagnosed for yrs. and yrs. Whether it be misdiagnosed and not recieving proper treatment for CH or some being told that they have CH when they have something else and could receive a different treatment that would help!
Best wishes,
Ex2
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jefferator
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Re: Please Read-Has Broken Cycle
« Reply #21 on: May 16th, 2005, 8:07pm » |
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Understand Bob P. Just please make sure its timed released to avoid the rebound. Thanks.
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Pinkfloyd
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Re: Please Read-Has Broken Cycle
« Reply #22 on: May 16th, 2005, 11:46pm » |
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on May 16th, 2005, 6:20pm, jefferator wrote:BOB__NO!!! Do NOT get an over the counter Alleve. Call you physician and get the Naprosyn
Naproxen 500EC timed release. If you take really strong Alleve and not what I described, you will likely rebound hard. I am not aware of any OTC timed released naproxens, and I STRONGLY recommend you get the prescription from your doctor. |
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Jeff.....step away from the keyboard.....please make no further attempts at instructing Bobp.....this is for only your own good.
step back.....back....no......further.....no......further......ah, that's good. 
and Bobp....I thought I was special....it saddens me to know otherwise. 
Bobw
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forgetfulnot
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Re: Please Read-Has Broken Cycle
« Reply #23 on: May 17th, 2005, 12:03am » |
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If it works do it.
Lee
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Bob P
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Re: Please Read-Has Broken Cycle
« Reply #24 on: May 17th, 2005, 9:33am » |
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Quote:| Jeff.....step away from the keyboard |
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