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 Oz (Read 1212 times)
JustinD
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Hi from Oz
May 4th, 2009 at 8:01pm
 
Just found this group (through Yahoo's Migraine group). I have spent a day or so reading posts and it would look like I am lucky.

This is my third season with CH.
Unknown to myself I had been suffering from cluster headaches for some time but I had believed I suffered from sinusitus. After being allergy tested I found out I have no allergies.

I normally get the congestion in my nasal passages and the feeling on a spike running into my left side forehead when experiencing a CH. My left eye lid droops.

Two years ago, when I was 41 years old young, I encountered my first significant cycle. I had been swimming a lot and competing in ocean races and had just completed a 2.6 mile ocean race. About a day or two later (it had just started raining), I was awoken at about 2am. It felt as if someone had kicked me in the head and I felt like the air pressure around me had changed. For the next 3 or 4 nights I would awaken at about 2am or 4am and spend 2hrs or so watching tv while popping anything. Previously Excedrin worked well with Advil but now it did nothing. I would typically get a days break and then back getting hits. I look back on it now but didn't realize at the time how much of a veg during the day I was. I was definately very slow, to the point of being dumb (just pulp).
I started going to the dr. and after about 4months of unsucessfully treating me I went to a neuro. With the Dr. we tried Cafegot (which worked but ripped my guts up). I went on beta blockers (which didn't help). The neuro fixed me up, though, with a 9 day course of Progesterin (not sure how spelt) and Calcium blockers for a month. That seemed to break the cycle. But then it started coming back and my neuro prescribed a cocktail of Epilim (epilepsy drug), an NSAID, and some anti-depressive. This stuff freaked me out and I didn't take it.
Funnily enough I decided to sleep on my side facing the other way (strange, huh) and the CHs stopped to a signficant degree. I think I also get migraines.
Now I don't drink, try to practice sleep hygeine and do ok.
It is now Autumn in Oz and it has started to rain again - seemingly a trigger for me. I have had 4 CHs in the last week but they came on around 7-8am so I was able to take imigran and stop them.
I have also been on my bicycle a lot and realized that I had been getting CHs the next morning but I had misinterpreted them as dehydration. I think the water approach does help me, as mentioned on this site. I also like a super-hot shower on my forehead while experiencing a CH as it seems to relieve the pressure.

Feels good to know there are other crazy people like myself out there.

Justin
Back to top
  
 
IP Logged
 
AussieBrian
CH.com Hall of Famer
*****
Offline


CH - It's all in your
head!


Posts: 3851
Cairns, Qld, Australia
Gender: male
Re: Hi from Oz
Reply #1 - May 4th, 2009 at 8:18pm
 
G'day Justin, and welcome to the biggest unfenced lunatic asylum outside of Canberra. You mentioned taking Immegran so I'm guessing it's in the pill form which really isn't used much by ClusterHeads as  it is so slow acting and most people prefer it as an injection.

Also, seriously consider oxygen which is the first weapon of choice of so many.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Only good daze ahead and as you're not a drinker it just means I'll have to double my efforts so as to keep the national economy in check.

Here's cheers,

Brian up north.

Back to top
  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
IP Logged
 
Iddy
CH.com Alumnus
***
Offline


Smile


Posts: 486
Toronto,Canada
Gender: male
Re: Hi from Oz
Reply #2 - May 4th, 2009 at 8:19pm
 
Hi Justin, Welcome

Try the oxygen info link on the left side of the page.

Lots of info on the site. Read away. Then ask away.

You shall be answered by caring folk Smiley
Back to top
  

Walk in Peace

"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama
 
IP Logged
 
JustinD
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: Hi from Oz
Reply #3 - May 4th, 2009 at 8:32pm
 
Iddy - I definately will look at the oxygen info.
Not sure how I would get it as it takes about 3 months to get an appointment with my Neuro. (assuming thats how its prescribed) but seeing your link, my assumption might be wrong.
AussieBrian - I do take the tablets (Imigran FDT). I takes upwards of 40 mins to help. Not that it has been offered but injecting myself is somewhat unsettling as an idea.

Ok. looked into the Oxygen thing - do you need a prescription for this in Australia?
Back to top
« Last Edit: May 4th, 2009 at 10:22pm by JustinD »  
 
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 Oz
Reply #4 - May 5th, 2009 at 8:59am
 
IF Verapamil worked for you, standard practice is to continue it for weeks/months until it's clear that you are out of the acticive CH cycle. There is no serious side effect to prolonged use, for most people, although, at higher doses that we need, an EKG is now suggested.

This protocol has become a standard with many docs:

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).
Back to top
  

Bob Johnson
 
IP Logged
 
BarbaraD
CH.com Alumnus
***
Offline


Hugs to ya


Posts: 8333
Douglasville, TX
Gender: female
Re: Hi from Oz
Reply #5 - May 5th, 2009 at 9:12am
 
I second the O2 suggestion. Don't know how it's dispensed in Australia, but Brian can probably tell you that. It works great on about 70% of us if used properly.

And you know the "not drinking" part has put Brian in a awful pickle - he now drinking for several people now and you just added another one to his already heavy load... Poor thing.... his work is never done Roll Eyes

Hope you're PF soon....

Hugs BD Kiss
Back to top
  

What don't kill ya, Makes ya stronger!
 
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 Oz
Reply #6 - May 5th, 2009 at 10:32am
 
Bob's given you great med advice on the verapamil. Try and get the oxygen as I can abort an attack in 6-8 minutes using it. Beats the 45-90 minutes dance I used to do with the beast. Get to a neuro now, get set up with the oxygen. The whether you're on or off cycle, always have the oxygen available. The on off switch is so unpredicatble with these things it's always best to stay prepared.

And do be careful with the OTC stuff. It can do some long term damage to the internals.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Kate in Oz
CH.com Hall of Famer
*****
Offline




Posts: 633
Australia
Gender: female
Re: Hi from Oz
Reply #7 - May 11th, 2009 at 8:07am
 
Hi Justin,

Glad you found this site - plenty of help and support when you need it. 

Re the oxygen you should be able to get that from your GP - although you may need to educate him/her.  Generally they can check up on it whilst you are in their office.   

I guess that if you have been reading on site you will see that caffine can help with the low level headaches (shadows), exercise can abort a hit if you get in early enough (obviously only works when you are awake) and personally I find that a really hot hotwater bottle can act as a great distractor during a hit (other people find cold/ice helpful).

Anyways, wish you all the best,

Kate
Back to top
  
339600790  
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!