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Propranolol (Read 1584 times)
Headache Boy uk
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Matthew ch 11 v 28


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Propranolol
Jul 12th, 2012 at 4:05pm
 

Hello all
Looks like the beast is back  Angry

Been hit 4 times in the last 5 days K7+ each time, the last one started at 5 pm as I was driving home from work , my box of imitrex was empty (just bad management I know ) and I still feel hung over now .

Any way went to the doctors this morning , my GP has retired and the person I wanted to see instead "doesn't work on Thursdays" so I had to see one of the other doctors.

I said to him that my clusters were back and that I needed my imigran jabs again and that I would also like o2 as an alternative abortive because I can only use 2 jabs a day and he said well if the first jab doesn't stop the headache then there's no point in using a second any way , and then he asked me if I had tried high strength codeine, which I politely declined and asked again for o2 which he ignored.

Then he went on to say I see you've had verapamil , do you want to start that again, which i also declined (long story ) he has now given me Propranolol (a beta blocker) at 10mg 3 times a day , and see how it goes......

Just wondered If any one out there has had any experience / success with these .
Also is it safe to use energy drinks with these, or should they be avoided as with verapamil ?

Nigel
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Radar63
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Re: Propranolol
Reply #1 - Jul 12th, 2012 at 4:22pm
 
HI Nigel

Propanolol worked a little for me only reducing the intensity slightly.  Not sure about the energy drinks, but did find that although they helped short term over a few days and into weeks they do have high levels of vit B which can aggravate the condition.
One thing I will say though the best thing for me has been Batch's regimen.  If you need help with where to source the meds check your inbox as i have sent my contact details to you.

Be persistent with the O2, get a HOOF (home oxygen form) from OUCH UK, take the research from here and if the paticular GP wont prescribe it, move to another one.  Dont know where you are but if you are in the SW, or even Cornwall I can recommend two really good GPs who will help.

Good luck mate.

Ian
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Headache Boy uk
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Matthew ch 11 v 28


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Re: Propranolol
Reply #2 - Jul 12th, 2012 at 4:37pm
 

Thanks Ian
I'm just out side Colchester so totally opposite side of the country. We do have another GP at our local practice who is usually up on things but they don't seem to work every day . but I'm defiantly going to see him next time one way or another .

just been reading some stuff on the old message board from a chemist who was saying that these drugs tend to be prescribed as an alternative to verapamil , so Ill suck em and see.

God bless

Nigel
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Bob Johnson
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Re: Propranolol
Reply #3 - Jul 12th, 2012 at 4:52pm
 
40-yrs ago when I first started Cluster Prop was a standard treatment--but it didn't work and there were no options at the time. It still doesn't work!

You suggest that Verap isn't for you. Why? It's the first choice as a prventive. See PDF file, below.

If Imitrex injection doesn't work quickly: are you using it at the first sign of an attack or waiting to see if it develops? Should be taken at first sign; delay will reduce effectiveness.

Assume you have seen the recommendation on Verap dosing....
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Mike NZ
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Re: Propranolol
Reply #4 - Jul 12th, 2012 at 5:31pm
 
You've got quite a low dose for proranolol. It is what I use as a preventives for chronic migraines, helping reduce the frequency down from more than one a day to a couple a week, however it took 240mg a day to do this, reducing to my current 200mg.

Not sure if it impacts my CHs as I've not had any whilst on the propranolol, which means that they are either a perfect preventive, although I suspect Batch's vitamin D magic recipe is helping more there or I've just not had an active episode.
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Headache Boy uk
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Matthew ch 11 v 28


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Re: Propranolol
Reply #5 - Jul 12th, 2012 at 7:54pm
 


Thanks guys
Bob I tried verapamil during my last cycle at 40mg per day ,at that low dose it did nothing for ch and gave me shakes , tremors,numbness and made me dizzy and jumpy as hell, obviously just didn't agree with me.

Mike the doc said he'd start me on a low dose and see how it goes , so i guess I have to go with it , got to be worth a try even if it is just to wright it off , but hay it might just work for me.

Thanks again and God bless

Nigel
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Mike NZ
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Re: Propranolol
Reply #6 - Jul 12th, 2012 at 9:55pm
 
Headache Boy uk wrote on Jul 12th, 2012 at 7:54pm:
Mike the doc said he'd start me on a low dose and see how it goes , so i guess I have to go with it , got to be worth a try even if it is just to wright it off , but hay it might just work for me.


Hope it does. Even at 30mg you'll soon notice your self confidence go through the roof as this is the dose used for a lot of people, like professional musicians with stage fright.

One thing to watch for at high doses (210mg or higher for me) is ultra vivid dreams. I got them in full colour, sound, textures, so real that it was lifelike apart from the truly horrible content. This was why I dropped the dose back a bit as they weren't fun.

And you do have lots of room to increase the dose until it either works or you get to the point where the side effects outweigh the benefits (if any).
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Matthew ch 11 v 28


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Re: Propranolol
Reply #7 - Jul 13th, 2012 at 12:57pm
 


That could be interesting then, I'v never been very confidant.

Starting them tonight ,i thought i'd get the working week over before i start just incase .....

God bless

Nigel

Sorry about the spelling , i'm useing my phone and the spell checker is not working
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Matthew ch 11 v 28


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Re: Propranolol
Reply #8 - Jul 15th, 2012 at 11:51am
 

Well I'm well in to day two of tacking the propranolol , there's no noticeable difference in how I feel and I have had no hits , just strong shadows .

I don't know whether that's to do with the drugs or just the way my cycles going , it is only my second cycle and the last one was a bit random , so Ill see how it goes.

God bless

Nigel
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Matthew ch 11 v 28


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Re: Propranolol
Reply #9 - Jul 16th, 2012 at 8:18pm
 

Had a few strong shadows to day and one hit at 2:30 this afternoon , got to a k5 before I got to my imitrex and touched on a k7 before the trex kicked in and saved me.

I was just wondering if propranolol is one of the prevents that takes a week or so to build up  ?

Nigel
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Re: Propranolol
Reply #10 - Jul 17th, 2012 at 3:09am
 
Certainly for migraine prevention, which will almost certainly match the behaviour for CH prevention, it takes a few weeks to become effective. For dose changes I've been told to change by 10 or 20mg a week at the most, both for increasing or decreasing the dose.
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Matthew ch 11 v 28


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Re: Propranolol
Reply #11 - Jul 17th, 2012 at 2:07pm
 

Thanks Mike , I wont wright it of just yet then.  Wink

Been hit 3 times so far today ,all K5 to K6 (not too bad but I'm thinking this is just the start) and I am having strong shadows now (fingers crossed) .

Thanks again ,
Wishing you many PFD&N
God bless

Nigel
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Re: Propranolol
Reply #12 - Jul 19th, 2012 at 9:29am
 
Hey Nigel, sorry they're back. Were you able to get the O2? Take care of yourself, good luck and God bless. lance
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Matthew ch 11 v 28


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Re: Propranolol
Reply #13 - Jul 21st, 2012 at 7:31pm
 

hay Lance

I didn't get O2 , the doc said" that's not going to help what do you want that for?"

at that point I decided that it wasn't worth even trying to explain ....

any how I've not had any hits for a few day now just strong shadows so hopefully the propranolol is working .

as for side effects I've noticed that my skin is feeling a bit numb but that's about it .

God bless

Nigel
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Re: Propranolol
Reply #14 - Jul 24th, 2012 at 2:43pm
 
Well, my prayers are with you brother. Let me know how the propanalol works. I haven't tried it yet. Who knows, maybe I need to go "old school" on this. They're managed, but by no means gone. Take care, and God bless. lance
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Re: Propranolol
Reply #15 - Jul 24th, 2012 at 3:09pm
 
Nigel: Many of us have learned that when we have to work with a doc who lacks kowledge/skill with Cluster we have to try and educate them. That assumes they have an open ego and are willing to accept medical information fromus. Hope it's not too late to try this with your your doc. Print the follow and give to him.
================================
Headache. 2005 Jan;45(1):98.   
CLUSTER.
Rozen TD.
High oxygen-flow rates for cluster headache. Neurology. 2004;63:593

THE TWO MOST EFFECTIVE CLUSTER ABORTIVE AGENTS ARE INJECTABLE SUMATRIPTAN AND INHALED OXYGEN. Because most cluster headache sufferers are cigarette smokers and at high risk of coronary artery disease, many develop contraindications to triptans. Oxygen, the safest of all cluster therapies, is not effective for every patient. In Kudrow's landmark study, 75% of patients responded to 100% oxygen at 7 L/min, although only 57% of older chronic cluster headache patients had relief. A recent study documented a gender difference in response to oxygen because only 59% of female cluster patients responded to oxygen, whereas 87% of men did. In most textbooks and articles on cluster headache treatment, patients are instructed to use 100% oxygen via a nonrebreather face mask at 7 to 10 L/min. The rationale behind this prescribed oxygen-flow rate is unknown but has become doctrine since the Kudrow study. Prescribing higher flow rates of oxygen up to 12 L/min has recently been suggested, but there is no documentation that this may improve efficacy. Higher oxygen-flow rates (up to 15 L/min) are not known to benefit cluster headache patients refractory to standard oxygen therapy. Three cluster headache patients who demonstrated no response to standard oxygen therapy were exposed to higher flow rates of oxygen (14 to 15 L/min) to assess response. Comments: Once again, Dr. Todd Rozen's observations will change my clinical practice!-Stewart J. Tepper, MD I have questions: Were these empirical observations or do Drs. Kudrow and Rozen know how rate of flow affects oxygen delivery? Is oxygen uptake higher with higher flows? After all, 100% oxygen is 100% oxygen unless under hyperbaric pressure! Perhaps higher flow rates dry the nasopharyx to a greater extent. If patients perceive a higher flow rate, might this be an enhanced placebo effect? It seems like an interesting study to be conducted, and it would be useful to test if using nasal cannulae is just as good. Pulse oximetry and arterialized capillary blood gases could be used to monitor oxygen saturation and CO(2) retention/carboxyhaemoglobin levels in smokers.-David S. Millson, MD.

PMID: 15663630 [PubMed]
===================
Headache. 2010 Nov 16.  [Epub ahead of print]

Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results From the United States Cluster Headache Survey.
Rozen TD, Fishman RS.

From the Geisinger Wyoming Valley, Department of Neurology, Wilkes-Barre, PA, USA (T.D. Rozen); Linde Healthcare, The Linde Group, Munich, Germany (R. S. Fishman).

Abstract
Objective.- To present results from the United States Cluster Headache Survey concerning the use of inhaled oxygen as acute treatment for cluster headache (CH). Background.- Several small clinic and community-based investigations have indicated that more than 50% of CH patients have never used oxygen for the treatment of their headaches. This statistic is alarming and the reasons why they have not tried oxygen have not been determined. Methods.- The United States Cluster Headache Survey is the largest study ever completed looking at CH sufferers living in the United States. The total survey consisted of 187 multiple choice questions, 84 questions dealt with oxygen use, efficacy and economics. The survey was placed on a website from October to December 2008. Results.- A total of 1134 individuals completed the survey (816 male, 318 female). Among them 868 patients had episodic CH while 266 had chronic CH. Ninety-three percent of survey responders were aware of oxygen as a CH therapy; however, 34% had never tried oxygen. Forty-four percent of patients had to suggest oxygen to their physicians to get prescribed. Twelve percent of physicians refused to prescribe oxygen. Fifty percent using oxygen never received training on proper use. Forty-five percent had to find their own source for oxygen. On prescriptions only 45% specified flow rate, 50% stated CH as diagnosis and 28% indicated mask type. Seventy percent of the surveyed population felt oxygen was effective but only 25% was presently using oxygen. Potential reasons for this finding include: oxygen is slow to onset; prescribed oxygen flow rates are too low for efficacy and most CH patients need to raise flow rates during attacks to achieve response. The efficacy of oxygen does not vary by the age of the patient, gender, the number of CH attacks per day, and smoking history. Episodic CH responds better and faster to inhaled oxygen than chronic CH. Oxygen plus a triptan may be more efficacious and faster at aborting a CH than a triptan alone. Sixteen percent of CH patients state that oxygen is unaffordable while 12% are getting welder grade oxygen because of costs of medical grade oxygen, and this form of oxygen could be potentially dangerous to the individual user. Conclusions.- Oxygen is underutilized by CH patients living in the United States. Current recommended oxygen treatment regime is not meeting the needs of many CH patients. Prescribed oxygen flow rates are too low for efficacy. Oxygen can be expensive and very difficult to obtain. Physicians need to be better educated on the use of inhaled oxygen for CH.

© 2010 American Headache Society.
PMID: 21083557 [PubMed
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Matthew ch 11 v 28


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Re: Propranolol
Reply #16 - Jul 24th, 2012 at 10:03pm
 

Thanks Bob

We have another Dr at our surgery who seems more up on modern stuff so I'll go and see him next time , the other guy just rolled his eyes and tutted when I mentioned "internet" and "forum" in a kinda I'm the doc and you don't know what your talking about  way.

Any way the propranolol seems to be working , I've had no hits since last Tuesday just shadows and not to bad on the side effects apart from not being able to keep my end up, as it were.  Don't know if this is a common side effect  but definitely annoying  Angry

still I and my wife would rather put up with that for a few weeks than go through the dance.... funny how we measure up and rationalize our reaction to a circumstance .

God bless

Nigel
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Matthew ch 11 v 28


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Re: Propranolol
Reply #17 - Aug 4th, 2012 at 7:45pm
 

Up Date

All is well , I've had no hits just a few shadows and other mentioned side effects seem to have settled down now so I guess old school is working for me .

AS always thank you so much for all the help and experience you have all provided .

God bless you all

Nigel
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