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        Cluster Headache Help and Support >> Cluster Headache Specific >> New and thankful for this site
        
(Message started by: diti on Jun 23^rd, 2007, 6:19am)

Title: New and thankful for this site
Post by diti on Jun 23^rd, 2007, 6:19am

Hi all

Have not had any for 5 years now they are back. Had them for about 15 years before that. Used my 5 year old Imigran (that’s what they call it down here). Worked well. Using pills and injections, also Prednisone 60mg and Verapamill 320mg. Worked fine 5 years ago. Doesn’t seem to work this time.

I am just so happy to have found this website. I did not know there are so many sufferers out there. It is a great support group and fantastic information. Did not know about O2 but will go to the Doc on Monday to get some. Just hope it will help.

Keep you all posted.

Dieter [smiley=huh.gif]

Title: Re: New and thankful for this site
Post by Bob_Johnson on Jun 23^rd, 2007, 8:03am

In case you have not seen this article, it's the most current thinking about treatments:

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: New and thankful for this site
Post by mabus on Jun 26^th, 2007, 1:07am

Welcome Dieter. Sorry to hear that they've made a return engagement - they'll eventually make a swan song, and hopefully soon. I've found than the expiration on Imigran/trex of a year is very conservative. I had a remission of nearly 5 years once, and the old leftovers were fine when they came back. Be sure to read the Trex tip, and be well and PF.

North or South Island?

Title: Re: New and thankful for this site
Post by diti on Jun 26^th, 2007, 10:23pm

Hallo Mabus

Thanks for the reply. I live in Wellington North Island and immigrated from Austria 18 years ago . I have not had any clusters for the last 5 years and thought they were gone for good. Had thrown out all the old medication after 3 years (big mistake) except 1 Imigran injection. What a saver it was until I could see my Doc. Did not think they would come back.

Also did not have access to this great website and all the information. After spending hours reading all the stories and seeing there are thousands out there like me, it makes me feel better. It is a really great support group.

Going to my Doc this afternoon to get more info on O2. I don’t know how it works here in NZ. I have a great Doc and she will get it for me.

How many clusters did you have after your 5 year remission?

Will let you know how I get on.

All the best ;;D
Dieter

Title: New and thankful for this site
Post by AussieBrian on Jun 26^th, 2007, 10:27pm

G'day Deits, and welcome to the nut-hut. Sorry you have to be here but if you're in any way affected by this monster then you're in the right place. There's all the info here you'll ever want (sometimes too much) and a mob of people only too willing to help.

Not that they can all be trusted because they're madder than cut snakes, but I'm the sane one so you can rely on me at least.

Notice that you haven't tried oxygen yet and please believe that it's a godsend for many. Try this link, http://mushys.com/kiwi because it was put together by our good friend Barry from Westralia along with a madman named Mr Happy and it details the good gear as available here down under.

I believe it's relevant to the Land of the Long White Cloud as well but any problems just get in touch straight away and we'll get you sorted out.

Cheers and beers,

Brian over the ditch.

Title: Re: New and thankful for this site
Post by mabus on Jun 27^th, 2007, 12:08am

Hallo Diets (that's yer new nickname, mate!). After my prolonged 5 year drought, they have been more frequent - I seem to average 18 month or 24 month intervals now. They bid me adieu a few weeks ago. I wouldn't be too upset if they never came to visit again, but that's what we all wish for. A 5 year hiatus would be welcome, and unexpected.

Title: Re: New and thankful for this site
Post by diti on Jun 27^th, 2007, 3:50am

Diets is back. Went to the doctor this afternoon and she put me onto BOC gas to get my oxygen. Thanks for the info Brian. Will help me to get the right stuff and I'm looking forward to trying it.

Title: Re: New and thankful for this site
Post by Barry_T_Coles on Jun 28^th, 2007, 4:38am

Hi Diets
Welcome & glad you got onto the o2 quickly, it will be your best friend for the time being.

Cheers
Barry

Title: Re: New and thankful for this site
Post by AussieBrian on Jun 28^th, 2007, 7:27pm

Go the Wallabies!!!!!

Title: Re: New and thankful for this site
Post by diti on Jun 28^th, 2007, 10:10pm

I don't think so. If all the Kiwis would have CH we still would kik ass. ;;D

Title: Re: New and thankful for this site
Post by BarbaraD on Jun 29^th, 2007, 8:04am

Welcome Diets

Sorry you're here, but glad you found us. Beware of those guys from downunder.. Annette will be along shortly -- she's got a little sense (most of the time).

We're here 24/7, so if you need any advice - want to rant - whatever - that's what we're here for. We've all been in your spot at one time or another (or are there now). Just know - you're not alone. When we say, "We know how you feel " WE DO.

Read read read...... we've probably got more info on CH here than most docs do, but we're not docs, so all we can offer is info to take to your doc to educate them (and most need it).

Again welcome....

Hug BD

Title: Re: New and thankful for this site
Post by Guiseppi on Jun 29^th, 2007, 3:12pm

Welcome to the boards from one of the sane guys state side! So happy to hear your doc agreed on the 02, almost 30 years and it's still my first line of defense. Hoping you catch a short cycle this time around!!!

Guiseppi

Title: Re: New and thankful for this site
Post by AussieBrian on Jul 1^st, 2007, 9:58pm

on 06/29/07 at 08:04:08, BarbaraD wrote:

Beware of those guys from downunder....

Hey, I resemble that remark. I'll have you know I did deep and meaningful scientific research in the pub last Saturday arvo and discovered that on the odd occasion the All Blacks beat the mighty Wallabies there's a massive, pandemic outbreak of CH!!!

I accept your gratitude and will gracefully await apologies.

Oz beer is the cure,

Wallaby Brian.

Title: Re: New and thankful for this site
Post by diti on Jul 1^st, 2007, 11:10pm

I apologise for the All Black performance to you Brian!

On a more serious note. Today I finally got my O2 organised. I won't get the bottle until tomorrow. It takes a day to get the account set-up. I also went to Wellington Hospital emergency department to get me a non-rebreathable mask. They were great. Got one straight away. I will be on O2 from tomorrow.

1 question I have to ask. I have been on Verappamill 400mg now for 2 weeks. Also Prednisone started with 80mg, tapered down now on 20 mg reducing 5 mg every 3 days. Should I also reduce the Verappamil and get off all medication? Will the O2 be enough? I am in my 7th week of CH.
I think the Verappamil is working. I did have just 3 CH in the last 48 hours to kip 4. Imigran 100mg helped quickly. Before that I had 4-5 in 24 hours up to kip8

My last cycle was so long ago. I don’t know exactly how long my cycles are lasting. Of course now I’m keeping notes of all headaches and medication I am taking.

And thanks again for all the replies and support. It has changed my life.

Diets
;;D

Title: be of any use Re: New and thankful for this site
Post by AussieBrian on Jul 2^nd, 2007, 9:15pm

G'day Diets, and fair dinkum it's good to hear that you're getting yourself sorted out. The O2 really is a great help to many and it's just a matter of practice to work out how it helps best for you.

As to your other medications, again it's just trial and error until you get the recipe right, remembering always that what works this time may well be useless next time round. Yon beastie has a habit of transmogrifying when you least expect it but the upside is that what's been completely unsuccessful in the past may turn out to be the magic bullet this time.

Also noticed that you're using Imegran pills. Many have found that these work far too slowly to be of much use (we know how quickly the monster can strike) but it also comes as an injectable or a nasal spray which are far, far faster acting. Try talking to your doc and bear in mind also that your local pharmacist is also a mine of information when it comes to various medications, their effects and interactions.

Battle on, mate, and together we shall be victorious!!!

(Except for the rugby)

Beefa Brian.

Title: Re: New and thankful for this site
Post by Guiseppi on Jul 3^rd, 2007, 12:10am

I use both my lithium as a prevent, and oxygen as my abortive. Like you, I have a fairly good idea of how long my cycles last. I stay on the lithium for 8-12 weeks, and always keep the oxygen handy for the break thrus.

When I think the cycle has run its' course, I start off the lithium, keeping the 02 REALLY close. When you think your cycle is over, start weaning off the verapamil but keep your 02 close. For me the 02 works more efficiently when I keep my preventative up. That way I'm not sucking 02 2X a day. Good luck!

Guisseppi

Title: Re: New and thankful for this site
Post by ordinary_joe on Jul 3^rd, 2007, 12:54am

HI all, I am back after 10+ good years. Probably 20 ugly ones before that. O2 is my lifesaver. It aborts 4-5 a day. Also on predsnisone taper. Just discoverd the site I love the site and appreciate the comments.

Title: Re: New and thankful for this site
Post by diti on Jul 3^rd, 2007, 9:24am

Hi all

Yes Brain I have the Imigran injections. They are great. Works for me within 2 min. As I am having 3-4 a day I am using the Imigran pill. I can take more of them. Works for me most of the time within 30 min. Injection as a last resort when I have a really bad one. Like today. Will ask the Doc for some nasal spray. Have not used it before. I also think I will increase my Vreapamil to 480mg as it is not working very well at the moment. Don't want to go higher without talking to the Doc. I have seen some are on up to 700mg.
Got the Oxygen today. Did not work but may have not done it right. Had it just 10lpm. Will use 15lpm next time. I will work it out how to use it best.
Still working my way through all the post and learning from other peoples experiences. Have not done so much reading on the net for years.
The last news from the All Black camp is they are all PF for the last few days and ready to hammer the Aussies.
If you ever come to Wellington I will have the O2 ready for you. Also will stockpile Imigran once my cycle is over.
Hope you are PF.
Welcome Joe. You discovered the best place on the net. They are great. Gives me a lot of strength and support. Are you using Verapamil with your Prednisone?

Diets :P

Title: Re: New and thankful for this site
Post by Lotus on Jul 3^rd, 2007, 10:45pm

Hi Diti

Welcome to the Board. :-)

I am a supporter for my husband who has CH and I am trying to learn as much as I can about the condition.

I am an Aussie now but I came from Auckland and lived there for 11 years, I had all my medical training in New Zealand and graduated from Auckland University. I still have a rather strong NZ accent at times that my Aussie friends here would laugh at me and say I talk like a Kiwi ;;D

I am glad to hear the All Blacks are PF and ready to do their Haka. I havent had time to watch much sport recently but I do try to keep an eye on their quest for the World Cup. I had a hard time here getting used to the Aussie systems of NRL and AFL, to me they are all rugby !!!

CH wise it looks like you are on the right track with both preventives and abortives and I am glad that you have now got oxygen. I hope that the increase in Verapamil will do the trick for you. My husband was on 720 mg. He went as high as 960 mg but that caused too much swelling and dizziness so it was cut down to 720 mg. He was also on Neurontin which really helped with the intensity of the attacks.

If you are getting 3,4 attacks a day then please try the imigran tip. It allows you to split each injection into 2 or 3 so that 2 injections would cover your 4 attacks and then you dont need to use extra imigran tablets or nasal sprays. The imigran tip is posted on the left hand side of the page under " Imitrex tip". The imigran nasal spray works a lot faster than the pills. It takes about 10 to 15 mins to work. My husband found the tablets to be pretty useless because they took too long.

Another abortive you might like to try during those high cycles when you get hit more than 3,4 a day is Zyprexa. Its actually used as an antipsychotic med but it works on the serotonin and it aborts CH quite well in some people. It doesnt work for all ( just like anything else ) but if it does work for you then it works quite quickly, between 7 and 10 mins. You just need to take a tablet, from as low as 2.5 mg up to 15 mg. My husband found 10 mg worked well for him. That way you can cut down on the triptans therefore reducing the risk on your cardiovascular system. The risk associated with Zyprexa is the increase risk of developing diabetes but if you only use them sparingly it isnt bad.

All the best to you and I hope that your cycle finishes soon. Painfree wishes for your days and nights.

Annette

Title: Re: New and thankful for this site
Post by diti on Jul 5^th, 2007, 2:43pm

Hi Annette
You poor bugger surrounded by all these Aussies. I came from Austria 17 years ago and love it in NZ especially Wellington.
The increase of Prednisone 50 mg and Verapamil has helped. Using 480 of Verapamil. Have read that you should have a ECG if you go higher. I don’t have any side effects from the meds. The attacks are not as severe anymore. Max kip 5. I also halved the Imigran injection 2 days ago for the second time it worked well. The first time it did not work. We can’t get the nasal spray here in NZ.
Also have used O2 for the last 2 days. It works but the CH comes back after 30-60 min. Is this normal or I am doing something wrong? When I use Imigran it stays away for 6-12 hours.
All the best Diets.
Wishing your husband lot of PF time. :D

Title: Re: New and thankful for this site
Post by AussieBrian on Jul 5^th, 2007, 9:41pm

If it's coming back 20-30 minutes later, try staying on the o2 longer.

Title: Re: New and thankful for this site
Post by Barry_T_Coles on Jul 6^th, 2007, 1:36am

Hi Diets
I use o2 only with no meds so far; I’ve found the best way for me to gauge the o2 amount and not have them re-occur is if you get on the o2 early while you still have all your marbles & count the number of breaths that it takes to abort the hit & then double that amount to finish off, IE if it takes 50 breaths to get rid of the pain then stay on the o2 for another 100 breaths.

Another indicator for me is my left sinus will be completely blocked while getting hit, if after I have done the 150 breaths & my sinus is still slightly blocked I will stay on until it becomes clear.
I use a non-rebreather but without the mask because I have a beard I can’t get a seal with the mask; I breathe straight from the bag and exhale through my nose.

Cheers
Barry

Title: Re: New and thankful for this site
Post by ordinary_joe on Jul 6^th, 2007, 2:15am

Thanks, for the hint on # of breaths. Tonight, after kip 5 and 6/7 in 2:30 hrs, O2 seems to be losing effectiveness a bit. I supplemented with Maxalt to abort. Second time I have had to do that in 3 nights. I take it orally... not bad tasting. Also on pred taper.... ugh.
God bless all!

Title: Re: New and thankful for this site
Post by diti on Jul 8^th, 2007, 11:20pm

Hi all

Thanks for the great advice from everybody. I may not have stayed long enough on the Oxygen. But the good news is that I had just 3 minor CH in the last 4 days. Max kip 3. I think the meds are working and I may have reached the peak of my cycle. I would like to thank everybody for the responses and advice. I learned so much from you guys and the site. It made it so much easier to cope with the last 8 weeks.

Looking forward to my first glass of Wine. Brian I may toast to the All Blacks win over the Aussies next weekend!
If you hear from anybody needing help or advice how to get things in New Zealand, pass them on to me.
Wishing you all heaps of PF time

Diets ;;D