Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Hi from new member! (Read 1682 times)
yogin23
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Hi from new member!
Jan 12th, 2013 at 6:50am
 
Hi all,

I've spent quite a few hours in the past and over the last week or so looking over this great site and thought it was time to say hi  Smiley.

I'm a 35yr old male, living in Bristol, UK and I've been a CH sufferer for about 8 years.  It's only in the the last couple of years that I've been properly diagnosed with CH. I've been misdiagnosed with everything from eyesight related headaches to wisdom tooth pain! 

I seem to get them yearly in the spring, 2-4 a day, lasting 6-8 weeks. Though unfortunately I am in a cycle now which started just after new year  Sad

The pain has always usually been on the right side of my head though this cycle is now on the left side with mild shadows on the right as well!?  Has anyone else had this?.

I am taking Sumatriptan nasal sprays as an abortive and have been prescribed verapamil though have stopped taking it as it makes me feel really weird and hasn't seemed to help much.

I've recently bought some RC seeds and am going to give these a try but am quite fearful of 'detoxing' from sumatriptan for 5 days, not sure I can handle the pain without it.  I don't have access to O2 at the moment unfortunately but am putting pressure on my doc to prescribe it.  Any other methods people might have for coping would be greatly appreciated.

Gonna keep reading through the great info on here and hopefully share some experiences with others who can truly understand what we go through!

Looking forward to getting to know you all Smiley

Back to top
  
 
IP Logged
 
Bob Johnson
CH.com Alumnus
***
Offline


"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Hi from new member!
Reply #1 - Jan 12th, 2013 at 1:32pm
 
Likely the most common reason Verap doesn't work is too low a 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).

=======================================
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.
===
But some preventive is important. Print out the PDF file, below, and use as a tool to discuss options with your doc if you decide to not continue with Verap.

Back to top
  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Hi from new member!
Reply #2 - Jan 12th, 2013 at 3:00pm
 
Hi and welcome

Whilst most of us have CHs always on the same side it isn't unknown for people to change sides. Normally this happens at the start of a cycle but some people can have it happen mid-cycle.

For verapamil it is common for people to be given too low a dose, with 360-480mg a day being helpful for most people and up to 1000mg for some. However if you've got low blood pressure then it can drop it even further which can result in issues plus it is good for giving you constipation too.

There are other preventives your doctor can give you like lithium and topomax. Plus look into trying out using vitamin D3 which a lot of us here have had great success with.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Also since you're from the UK, check out a local CH group - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register - they even have a phone helpline.

Keep reading and you'll learn a lot, lot more about CH.
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Hi from new member!
Reply #3 - Jan 14th, 2013 at 10:02am
 
Welcome to the board, I'll second Mike's suggestion to try the D-3 regimen. After over 30 years of CH,  Batch's D-3 regimen has had me pain free for close to 3 years. please give it a look see,


Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
BudO
CH.com Newbie
*
Offline


I have to grow old but
I do not have to grow
UP


Posts: 15
Cle Elum, WA
Gender: male
Re: Hi from new member!
Reply #4 - Jan 14th, 2013 at 7:44pm
 
Re verapamil I also encountered side efffects of lightheadedness & dizzyness. My neurologist instructed me then to take it with meals and that resolved all the problems.

Bud
Back to top
  
WWW bud0121  
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Hi from new member!
Reply #5 - Jan 15th, 2013 at 7:52am
 
Push for the O2, it really is the best of all best abortives. Some of us have also found that chugging an energy drink (Red Bull, Monster, Rock Star...) at the first sign of a hit, especially when coupled with high flow O2, can go a long way to not only aborting the attack but also preventing another attack too soon. The key seems to be the combination of 1000mg Taurine plus caffeine. Good luck and God bless. lance
Back to top
  
 
IP Logged
 
yogin23
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: Hi from new member!
Reply #6 - Jan 16th, 2013 at 4:12am
 
Thanks for the welcome guys!

I have just started the D3 Vitamin regimen, except without the vitamin K as that hasn't arrived yet.  I'm also on day 4 of a detox from Sumatriptan and am going to try busting with RC seeds tomorrow night.  It's been a hard few days but lots of ginger tea and honey has seemed to have helped a bit.

I've also been taking Aloe Vera at the suggestion of a friend who's into Ayurvedic medicine.  Difficult to know if it's had an effect but I've managed the past few days with no more than a kip 6-7 when they're usually kip 8-9.  Who knows! I must try and be more scientific with my treatments!

I've now also managed to talk my doc into prescribing O2 which is a real breakthrough.  Hopefully should arrive in the next few days.

Bummer is that I'm going abroad for work for a month next week so cannot take the O2 with me.  Really hoping the D3 and busting will kick in before I go.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!