How is everyone going?

28 Jan, 2012 - 8:05 pm

Hi guys

I've been enjoying summer this year.
I've found new love and i've been pain free since the end of November 2011...
So far so good.
I'm still avoiding alcohol completely, im just too paranoid of it triggering my next bout.
Still taking 20mg of endep each night and thats it.
How are all of you guys doing?
Has anyone else managed to go green this year?

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29 Jan, 2012 - 3:01 am

G'day Tara, good to hear from you, and congratulations on staying green.
Avoiding alcohol can never be a bad thing , although it can get tedious explaining why to folks, especially in australia.
I LOVE red wine, but haven't touched it for a couple of years; no idea if it helps or not. I missed my "start of Autumn" bout, same as two years ago, so i'm now wondering what my cycle is. Not complaining, mind you, just unsure. Still don't leave the house without Imigran in my pocket though.
Best wishes to you for a totally green year Tara.

cheers peter.

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29 Jan, 2012 - 12:18 pm

Hi Tara

Glad to see you are still in the green and able to enjoy life and may the next hundred years be the same.

cheers
Barry

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29 Jan, 2012 - 1:50 pm

Hi Guys, Mine have changed in the last week from one episode a night to last night having one every hour and half!

Also I have never got them in the day before and this morning I was walking along Altona beach when the shadow turned into a full blown attack..I had to walk 2 kms back to my mother in laws house and get my partner to drive me home to get on the oxygen.

I then slept for an hour and was awoken again by another attack this time it took 18 minutes for the oxygen to work ... i am exhausted and want to sleep but I am too scared to lay back down!!

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30 Jan, 2012 - 2:58 am

G'day Rich. Ouch, that's nasty. Do you remember doing something different or something changing in the last week to cause an escalation of attacks? It might give you something to work with in reducing your attacks.

cheers peter.

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30 Jan, 2012 - 5:29 am

Hi Tara,

I'm glad to see that you are still in the green and i hope that you stay that way for the rest of the year.

Rich,

Sorry to hear that you CH's have taken a turn for the worse, may you get relief soon. It looks like you need to carry some abortive Meds with you when you go out all the time. When i go out i always take meds to help me, so i don't have to leave where i am. I hate leaving something when you have paid to get in and you are with the kids. The last thing i want to say to the kids is that we have to go because dad's head is hurting.

Matt

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30 Jan, 2012 - 6:58 am

Hi Guys,

I went for a surf on Saturday and although I had sunscreen on - I didnt re apply and got quite burnt on my face..I am not sure if this would have anything to do with it?

I had a better night last night with only 2 attacks one at 2.00 and one at 4.30am and they were not as severe with the Oxygen taking 10 minutes both times.

Thanks for the replies.

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26 Apr, 2012 - 10:00 pm

Greetings
So happy to be staying green this year, so far so good.
My best wishes to you all.

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27 Apr, 2012 - 8:57 am

Good news, and thanks for the wishes.
Keep it green!

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27 Oct, 2014 - 6:14 pm

Hello it's been a while but thought I'd update you all on Brad's CH condition.
In the last 6yrs Brad has not had more than 1 continuous week CH free. Every single night he suffers.

Prof Zagami Syd neurologist said unfortunately a variant form of CH has set in with Brad and thus far all regular treatment has not given him any form of remission period.
We have tried all the mentioned drugs on this website including neuropathic pain treatment and the CH's keep rolling in everyday.

The promising news is that Brad had his first Botox injections administered by another neurologist Dr Schwartz Kogarah Syd Sept 2014.

We have seen improvement! He continued getting CH's every night but they became predictable once every night for 1 hr (using Imigran nasal spray each time) instead of for 2hr, 3hr, 7hr and up to 12hrs suffering.
This occurred for 1 week then he suffered 4 days in a row for 2-3 hrs each episode. Then back to 1hr episodes for 2 days. Then CH free for 4 continuous days! Hooray! Then one 4hr episode. The day before last one 1 hr episode and now going on 2 days CH free.

Brad will receive another dose of Botox injections 1week before Christmas.

This has been the most promising treatment we have done to date!

Brad was on 360mgx2/day of Isoptin and is currently on 180mg of Isoptin x2/day and gradually eliminating this drug from his system all together.

Chez
Finally feeling some hope for the first time!

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01 Nov, 2014 - 6:02 pm

Well it certainly is a long time since I have been on line, though, I often call in for a read. The new site looks very spiffy. I remain in the red, but don't wish to dwell on it!
It seems we all still go through the same rigmarole, but pleasing to see some small wins ie Botox now on the "free list" even if we have to say for migraines. Odd things like $2.50 surcharge for Imigran FDT amazes me! I putter along, trying different things or retrying old.
My painting is my saviour, and travelling has become my love. I just stock up on Imigran and away I go. I reckon might as well have the pain away as home! Off to Tuscany next year for a painting workshop unless kicked the bucket before hand....currently waiting for some results! Head pain recedes when life threatened!
Hang in there people....always remember pain can not kill you......learn to manage it, educate those around you. My mantra remains....it will stop!!!!!!
Cheers to all my old friends

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09 Nov, 2014 - 5:01 pm

HI Guys, I've been in a bad place for close to a month, mostly one a night, but sometimes a blast during the day as well, just to spice things up a bit. A lady I know through Deerhounds, told me when she was younger she used to get clusters and her old doctor gave her vit B2 - 200mg morning and 200mg evening. She took them for a couple of weeks and hasn't had one single headache for years. I thought,what the hell, I would try anything, sick of taking imigran and all the other stuff that is supposed to prevent them coming, but never does. Started the VIt B2 Wednesday morning, Today is Sunday and I've had 3 night in the row pain free. Still a bit scared to believe that I'll have another good night. It seems to be too easy, too simple. I thought I'd share it with you - just in case it does work. Yes, your wee will turn real orange colour, but that could be a good sideline - roof restoring to original terracotta appearance. It's not expensive and no side effects, so worth a try. The way I felt I would have tried anything. Now this could just be a coincidence, but who knows.

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21 Nov, 2014 - 1:55 pm

Hi guys.

i took preventative medication Veramapil from March to September (my attacks had been for an average of 5 weeks between may and August). I didnt experience one attack although the side effects of the medication were not pleasant (mostly the constipation suffered). However in the past 2 weeks the attacks have returned and appear to be more rgular although mostly less severe, apart from last nights that was very unpleasant.
I had 1 beer and have noticed that even this maybe a trigger?
I will try the B2 you are suggesting DMA.

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21 Nov, 2014 - 1:59 pm

I'm not saying it will help everybody, I was seriously sceptical when I was told that it worked for somebody, Now I am over the moon, after I started on the vit b2 I did have a couple of early twinges in the evenings, so quickly killed those with the painkillers, never got to full blown and it was over in less than 15 minutes. Since then NOTHING! I'll keep taking the vitamine for quite a while just to make sure the buggers don't come back. It's worth a try, easy , cheap and no side effects ( unless you like looking at your wee, which will be seriously orange). Good luck Fordie I hope it works for you and you change your status to green.

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21 Nov, 2014 - 2:02 pm

Thanks DMA-I will be buying some tomorrow! I will post the outcome.

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21 Nov, 2014 - 2:09 pm

Thanks , I'm really interested if it does work for others. It would be fantastic if at least a few of us got relief from it. I'll keep my fingers crossed. My friend took two weeks on it to really get rid of the exploding head, with me the big difference was after just two days, then the couple of starts I mentioned within the first week and nothing since then.

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10 Dec, 2014 - 8:50 am

HI Guys, has anybody else tried vit B2? I have been totally pain free since I started on it, and just wonder if it helped anybody other than me?

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10 Dec, 2014 - 3:35 pm

Hi guys,

I have been taking it for 2 weeks now but the chemist and the internet says that you need to take for a month before you can expect results.
My current cycle is so different from previous ones with the intensity nowhere near as bad although more frequent. A lot during the day which didnt happen previously although majority within 2 hours of going to bed. I seem to get a lot of shar pains at random times in the area around my eye where the pain always is.
Hope all of you are doing ok.
.

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10 Dec, 2014 - 4:19 pm

Hi Fordie, thanks for the update, I was really lucky, it worked for me within days, and then two starts that imigran killed pretty fast. Since then mercifully nothing. The girl who told me about it said it took around a month for her to really kick in and make a difference. HOpe it does help you as much as it helped me.

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29 Dec, 2014 - 12:00 pm

Hi guys

It is encouraging to read the different posts. Everyone has a different story to tell and it is great that there is an opportunity to share ideas.

My son has a chronic condition and reading through the posts I realise that he is not alone. He has had the condition for the past seven years and it is ever changing. It is the worst it has ever been at present with an attack on the hour! This occurs when his sleep period on a daily basis. It makes me want to pull my hair out - and I am not the one who has to feel the pain. Like so many of you, he has also gone through the list of regular meds and combinations. The only thing that has helped has been Melatonin. Of course, O2 (almost a cylinder per day at present) and Verapamil.
But I think that we are at the end of the road with its usefulness.

Thinking of going on the Vitamin regime. It is the only option. Unsure if one still stays on the Verapamil as a preventative.. Any thoughts?

Ahh! This Beast!

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29 Dec, 2014 - 4:46 pm

HI Harp,

I'm still pain free and still religiously taking 200mg of vit B2 every morning and every evening - I'm too scared to stop taking it. Really don't want to go back to that awful place.
The big thing about trying it out is that is doesn't interfere with any other meds so we can keep taking prescription stuff plus the vitamine.
As I keep saying it may not work for everybody but it sure is worth a try.

Hope your son gets some pain free time just to feel human again for a little while.

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29 Dec, 2014 - 5:18 pm

Hi DMA. Appreciate your response.
I hope that this keeps you pain free and that you can resume your life.
Will keep this in mind and hope that he will try it.
Best wishes to you

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29 Dec, 2014 - 5:40 pm

It sounded so easy I didn't really believe, but after trying so many other thing I would have tried anything just to stop the pain and get one normal night's sleep. If somebody came and told me that sticking my fingers into a power point would help I would have tried that as well. I still live in fear that the monster will come back, but so far so good. Fingers crossed.

Being in this group really helped me when I was seriously struggling, at least you are talking to people who REALLY understand, not just try to humour you.

Give your son a big big hug.

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29 Dec, 2014 - 5:57 pm

Thanks DMA.
I agree. It is a group who do really understand.
B2 x200 mgs twice a day..
Did you try any particular brand? My son has been taking Berocca. That contains B12.
As you say, it goes straight through your system so it cannot interact with the other meds.
No harm in trying!

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29 Dec, 2014 - 7:29 pm

It has to be a high dose, Berocca only has a tiny llittle bit of it. I use Herbs of Gold, it's pretty expensive but they actually have 200mg so only one pill morning and one night.
Makes your wee bright orange, but that is a tiny price to pay for being pain free and I doubt anybody is checking out my wee!
It is definitely worth a try.

Lots of hugs

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29 Dec, 2014 - 7:31 pm

Thanks for all your help.
Will keep you updated.

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29 Dec, 2014 - 7:33 pm

Please let us all know, I have asked before if anybody tried it and if anybody has had any success. So far everybody is really quiet - I would love to hear that it worked for somebody other than the friend who told me about it and me.

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11 Jan, 2015 - 3:49 pm

Hi everybody, how are you guys going? Just thought I'd let you know that I'm still pain free, slowly winding down the B2, down to 200mg a day. So far so good. It's the longest I've been pain free for ages and I love not being to scared to go to bed at night.
Wonder if anybody else has tried it and did it work for anybody.

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11 Jan, 2015 - 4:45 pm

I have been taking 400mg a day for about 7 weeks and was told to allow 4 weeks for it to be effective. Well that is about how it has been to a tee as for the past 2-3 weeks no attacks. Having said that the real test will come later in the year during my normal suffering period. Fingers crossed! Hope fellow CH sufferers are bearing up ok.

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31 Jul, 2015 - 7:35 pm

Hi DMA, my boyfriends CH's have just started again, his are usually every year but this time it's been almost two years, I was telling him about your success with Vitamin B2, so I'm just about to head to the shop now to get some for him. His usually last about 6 weeks, but last time two years ago they lasted 3 months. Are they still working for you, will let you know how he goes!

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01 Aug, 2015 - 8:01 am

Hi Tezmo, I have had a really good break from the pain for a few months, I was buying the pretty expensive Herbs of Gold brand and it worked really well, then I got a bit stingy and changed brands to a cheaper one, had a cluster for about 10 days, not as horrid as usual, the intensity wasn't quite there. I went back to Herbs of gold and the last two nights have been pain free so hopefully I'm out of this cluster. I'll keep taking the good stuff. Obviously there is a difference in the quality of the vitamins between different brands. I'm not saying it definitely works, but it's certainly worth a try. I ended up with 400mg in the mornings and 200mg evening. Let me know how your boyfriend goes. You can play around with the dosage, up it a bit - you can't overdose, any extra just gets out in the wee. Fingers crossed it works for him as well. During the cluster I take imigran and panadeine forte - that seems to kill the pain within 20 mins to half an hour.
Give your boyfriend a hug from me.

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01 Aug, 2015 - 6:53 pm

Thanks DMA, I'll definitely get the Herbs of Gold, I went to the chemist last night but they didn't have that brand so had to get the natures own version, but they're ordering a bioceuticals migraine care tablet that apparently has 200mg of Vitamin B2, but it also has magnesium, which the chemist said might work, although they aren't quite getting that these aren't migraine, they're cluster headaches, so I'm going to get the Herbs of Gold version of just Vitamin B2 tomorrow from another shop I've found as I kind of want to stick to what working for you. He went from 6am to 5pm today without a CH (usually they're every 4 hours) so we're a little hopeful but think it must have just been a fluke. He currently uses oxygen, tramadol or sumatriptan and asprin to kill them. Good to know we can up the dose, I've read you cant overdose on them so I might even get him to try the 400mg in the morning and 200 at night! Will give him a big hug and crossing my fingers you're out of yours now

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01 Aug, 2015 - 7:20 pm

I was so happy during the night when it sort of wanted to start, but then decided to go away. It's always such a relief when they don't go to full power. That usually happens within less than a minute from the twinge. I'm scared of tonight, hopefully it won't come back but ..... it's just one of those things, you never know what the monster will do. I hope it will jump back in its box and stay there for me and for your darling.
I'll try the bioceuticals you mention, I'll try anything, if they are natural I'm more inclined to give them a bigger go. I try to take as little of the painkillers as possible, but during the attack all that goes out the window and I would take ANYTHING to stop the pain.
Hugs

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03 Aug, 2015 - 8:03 am

Hi DMA, update time! It really seems to be making a difference! So yesterday I think he only had 4, during the night his first one didn't actually come on, but he had that 'instant awake' feeling he gets when one starts but nothing came of it, then he had two more during the night but much less intensity! Then just one during the day yesterday. Last night he only had one at 4am, he had all his med's (as you say all hope goes out the window when one starts and he just doesn't want to wait to see how long it'll last) but that one only lasted 10mins, now he's annoyed he had the med's as he'll be out of it for most of the day, but only one during the night for him is unheard of! Yesterday I got him to take 4 of the natures own 100mg vitamin B2, but yesterday arvo I found the same brand you have Herbs of Gold so he's on that one now, so we're really amazed and hopeful they will get easier on him, thank you so much! Will keep you posted! Hope you're night was ok! Terri xThis post was edited on 03/08/2015 at 8:03 am

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03 Aug, 2015 - 8:19 am

For anyone else reading this post, our chemist only stocked one version of Vitamin B2 in Natures Own, our chemist said their version wouldn't be as pure as the better ones, but it has made a difference. If you're after the Herbs of Gold version you can go onto their website and use their Store Locator to find where it's stocked, it seems to be stocked at places that sell Vitamins and Supplements, I got a jar of 60 tablets for $27 This post was edited on 03/08/2015 at 8:20 am

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03 Aug, 2015 - 8:31 am

A while since I have posted also and whilst some stories are not enjoyable to read there were some positives.

Personally I am past my usual annual attack time, which was usually for a 5 week period with attacks 5-6 nights a week lasting around 1 hour.

Last year I did not suffer the attacks after my neurosurgeon trialled me on the preventative medication. Verapamil. However the side effects, particularly the constipation, were extremely uncomfortable and was testing all types of laxatives. So this year I decided to not seek the prescription and have been taking daily doses of 400mg of B2 after reading of the success on here of others.
Touch wood so far so good.

Those who are suffering, my thoughts are with you and I pray for all sufferers that in the very near future, as the medicine world finds solutions for more and more diseases that funding is adequate for our illness and a cure is just around teh corner. I cannot bear to imagine the lifestyle that you severe sufferers have to endure..

Take care,
Kind REgards,
Bob

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03 Aug, 2015 - 11:16 am

I'm so glad to hear that it seems to be making a difference! I had three nights and days pain free which is making me feel just a touch happy! I always wonder whether it is the b2 that makes a difference or is it just a coincidence that I get on the good brand and the headaches wonder off. Sounds like it may actually be making a difference. I found the same thing Tezmo, the start, the fear that it will blow into a full "want to bury an axe in my head" pain, and then it just fizzles out. Sounds like the same thing is happening to your boyfriend so we keep taking the B2 and hoping for the best. I'm so happy to hear that it seems to be making a difference to him. It takes somebody who's been there to really understand the terror we feel when we get the first twinge, I have found that normally if it's going to go to a full blown attack it happens pretty quickly, literally within a minute of the first little twinge, so I do give it a minute now to see what happens, if it keeps moving I gobble the painkillers, if it doesn't I just sit quietly on the side of the bed and do a lot of slow deep breathing and then fall back into bed.

Sending hugs to everybody who is currently putting up with the monster, it would be so good if more research was done and a full proof method of stopping the pain once it starts was discovered. We live in hope.

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04 Aug, 2015 - 12:52 am

Hi DMA, are you also using oxygen? Steve has found that's what really works for him, he swears by it!

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04 Aug, 2015 - 12:55 am

Hi Bob, so happy you're having luck with the B2, I'm really hoping this is something new that could possibly make a difference with my boyfriend, last time they lasted 3 months, I really don't want him to suffer like that again

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04 Aug, 2015 - 11:23 am

I had a half hearted attack last night, took the imigran, but it only lasted around 20 mins, and was nowhere as bad as usual. I'm waiting for the oxygen, hopefully it will be another weapon against the nasty monster.
I'm so glad we found this place to talk about our experiences and learn what works for others. I have a feeling that it's one of those things that what works beautifully for some does absolutely nothing for others. All we can do is try as many ways of dealing with the problem as we can find.
good luck to all of you who are currently suffering - hope it doesn't last long and isn't mega strong.

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18 Jul, 2016 - 10:56 am

Hi All,

I am not a Migraine Sufferer since my teens, but my teenage son has had a hell of a time over the last few years. We tried all of the conventional practitioners and natural therapies available to us here in Tasmania. We were on the waiting list for the Royal Children's Hospital in Melbourne when we came across the following treatment. It is not specifically addressing this disorder, but addressing the body as a whole.

Anyway, we decided that we had nothing to loose, as preventative medications were taking over my sons life. There was just something about that which didn't sit right with us.

So this is our miracle treatments for our sons Chronic Migraines. If this helps just one person battle this demon then my constant posts will have paid off.

All the best with your battles!

Leanne

https://www.facebook.com/NeuroPhysicsFP/videos/492845147580981/

https://vimeo.com/174182313

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