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Posted in Want to take part in a clinical research study? on 07 Sep, 2017 - 12:22 am

Shame I'm in sa

Posted in Out of the box but worth a try on 20 Aug, 2017 - 11:56 am

As per my last post, had allergic reaction to the drugs I was taking, but this kind of gave a silver lining.

Don't know why it's working but sat down with pain specialist Friday and this is what it is

Clarytine liquid 10 mls at night followed a hour later with 25mg of topiramate

What we think may be happening is
The antihistamine is calming the nasial ganglion to help stop that aspect triggering the trigeminal nerve whilst the topiramate works on the chemical balance

But all I know for now and last few months I've been pain free and shadowing is minimal and I can function

Anyone suffering give it a go and report back and let me know and I will let my pain specialist know it's not just me this is working with

Posted in May help on 15 Mar, 2017 - 10:37 pm

Quick update, Saturday I had to quit this due to an allergic reaction to a filler used in the diltiazem, sadly same filler used in verapramil tablets and another tablet that caused an allergic reaction hence why not on them, means I'm also screwed on abortive meds as it's used in naramig imigran and maxalt, imigran nasal spray has lost its effect so go through 4 a day and imigran injection is just not viable due to cost, seeing dr again in the morning but don't hold much hope at this moment except I can expect a living hell for a while I guess

Good luck guys I'm off to feel sorry for myself for a while

Posted in Medicinal maruana on 09 Mar, 2017 - 3:15 pm

Tried smoking some on a few occasions when I got the warning signs of an attack, and would not recommend it at all, I didn't think it was possible for the pain to get worse but somehow it managed to prove me wrong on all occasions

Posted in May help on 09 Mar, 2017 - 2:43 pm

Hi guys just passing out some info that may help some of you out caught in the grips of the cycle, I've been a chronic suffer now for about 6 years going from episodic,
Gone through the usual treatments and they have all failed at some point or dose got too large,
Last round was topimate and 3 months ago that started to fail, my dr has been great and given me free rein to find something, so far this is working
25mg topimate at night
180mg diltiazem in the morning with 25mg topimate cut in half (take half 12.5mg)
Remember it takes a few days for the diltiazem to get into your system same as versacaps, so far with this playing around with dose I'm pain free touch wood

Hope it helps someone info shared is less suffering for someone else

Posted in VERAPAMIL on 31 Dec, 2016 - 12:00 pm

Had a reaction to cordalox but prob for the best as I was up to 900mg a day and on weekly ecg to check I was ok

Posted in VERAPAMIL on 19 Jun, 2015 - 10:03 pm

Had to stop talking veraprimill since the caps have stopped being produced, on day 2 of an allergic reaction to the sr tablet oh yay but as i was on 900mg a day not surprising.
Pain specialist is sending a script for Topiramate so fingers crossed that works

Posted in New Here, Not sure on 05 Feb, 2015 - 1:47 am

It could be, read the home page as that gives a lot of info,
After that print out as much info as you can find drop a copy into the dr with a note and make a long appt, and go through it together.

On this site your find lots of info on medications both abortive and preventative, and make sure you have a copy of that with you,

Sadly this is what I did after seeing a TV show on LSD and medical possibilities.
Most of the seasoned ch ers here know stacks more than most gp's, and it's worth reading as many posts as you can because knowledge is power and you have a duty of care to yourself to know what your up against.
Vapramil is the drug of choice for ch, and it works great, start low and work the dose up, imigran is the best for aborting but be warned you have a script limit on the pbs, my fall back is naramig when this happens.
Imigran naisal spray works quicker than the pills, but you only get 2 stays to a script where you get 4 pills for a script, so start with the pills, and see if that works they do for me but can take 25 min to work.

Posted in Is there a Preventive Medication left that I have not tried? on 04 Feb, 2015 - 11:27 pm

Scratch the Di-gesic
All it's done is hold it off for 4 hours the first few times, after 5/6 hits relief lasts a hour, not only that but when it comes back it's a total bitch, I didn't think the Ch pain could get worse, but this is a whole new level.
Could be my age has made it worse, but used to work fantastic.

Posted in Would warferine work on 04 Feb, 2015 - 5:22 pm

As a chronic ch sufferer, with no preventives working I've spent last few days reading back posts,

Now my wondering is would a blood thinner like warferine work,

Mainly because is Ch is caused by vascular expansion the blood as it is currently builds friction giving that whoom whoom feel with each stabbing pain, with thinner blood the friction would be less as it is runnier leading to less whoom whoom to say a mild whoom, it may even remove shadows, as many report disprin or other ndis medications work,
Not sure the effect it would have on blood pressure, my initial thinking is it would lesson it, but I need to research this b4 approaching my dr.
As fellow suffered I appreciate your ideas


Posted in New to cluster headaches on 04 Feb, 2015 - 1:08 pm

Important thing is keep a diary of when you have 1, time it starts date ect,
Speak to your gp, and get a diagnosis from them, print off as much info from here as you can, and take that with you to the appt.

The hard part is finding a preventor, there are so many out there, but verapamil is a common preventor and it's just a case of try and see if it works and what strength.

Imigran is a abortive, comes in pill and naisal spray on pbs, injection on private script but is very very expensive,
Naramig is another preventor in tablet form and works well with me if taken in time, if I'm a fraction of time too long with that it can strech pain out to a hour.
As nasty as it sounds its trial and error now, I just hope you have a good gp,

Posted in New to cluster headaches on 04 Feb, 2015 - 12:04 pm

To me sounds more like migraine than cluster headaches,
Can you list symptoms your having.
Migraines can last days, without a break.
The home page describes clusters and the symptoms very very well,
If your still suffering talk to your gp about an abortive there are several which work great on migraines and clusters, keep a food and drink diary and see if there is something that triggers it.

Posted in Stuck in Prison on 04 Feb, 2015 - 8:50 am

Hi buddy,

Resting my heart rate is 72-80 onset of an attack 93-100
Mid attack 120
All beats per min

Average blood pressure resting


Mid attack 156/107

Normal body temp 36
Mid attack 38.7

Since all meds have stopped working I've been OCD on looking at everything

Posted in VERAPAMIL on 03 Feb, 2015 - 7:15 pm

Hi bru,

Gone through all options gave in and tried lithium combined with vaprimill, lasted 3 days till lithium made me feel like crap and stopped,

Tried everything on the list as a preventor, so he is waiting on nuro, and pretty much told me to manage the pain, after yelling at me for upping the vap dose up to 480mg

Posted in chilli sauce on 02 Feb, 2015 - 3:49 pm

I brought some rinar a few years ago, it's a capsicum naisal spray, bout $45 from the pharmacy, burnt like f&@$ made my eyes water, tasted like crap, but I followed the distructions to the letter.
All it's done is removed one of my warning signs of a imminent pain session. The blocked nose, well 6/10 attacks and removed it completey for shadows

Posted in I am hopefully cured on 02 Feb, 2015 - 12:41 am

I'll be getting some ASAP, it has to be worth a try

Posted in Triggers and treatments on 01 Feb, 2015 - 8:47 pm

Just a update with today's attack where I used Di-gesic to ward off a 4/5 attack 4 hours later it came back kicked my ass and made me it's bitch, 40 min of sheer hell of a 10 till naramig kicked in, never had that happen in the past with capadex,

Posted in Is there a Preventive Medication left that I have not tried? on 01 Feb, 2015 - 5:56 pm

Hi Ben

Only thing I can offer into this is Di-gesic as a pain control option, I had success with it a few years ago when it was called capadex and then it was placed in a banned list,

Posted in Triggers and treatments on 01 Feb, 2015 - 11:46 am

After 18 months pain free here we go again versacap has stopped working which I knew as shadowing had started,

So now avoiding anything that has ammino acids in it, after discovering it in a vitamin supplement that after 2 nights taking brought on a episode from hell.

In pain management phase till nuro appt.
Tried canabis as several studies showed favorable results, omg not only did it NOT help pain went from a 9 to grab a gun and please kill me now
So now imigran naramig and Di-Gesic to manage pain.
Tremadol and other opioid drugs do jack,
So any suggestions greatly welcomed I know heat is s trigger so taking steps to keep core temp as low as poss, aim is 35 deg as or cooler as normal body temp is around 36.8 and spikes at 38.7 5-10 min b4 a episode I found the cooler I can be has a effect on pain level where I have 12 min from initial signs to attack the colder I am can draw out the time to attack to 18-20 min which means less time in pain waiting for abortive to kick in. Any views on this trick welcome

Posted in VERAPAMIL on 01 Feb, 2015 - 11:26 am

Verapamil is still available, I had to stop taking it last week due to 480mg daily not working any longer, needless to say I'm gutted but knew it was coming

Posted in Aspirin for shadows on 01 Feb, 2015 - 11:16 am

Any of the disprins should help with shadows, mainly because they thin the blood which has a small knock on effect with blood pressure.

For shadows I just use panadine extra or nurophen plus, take 3 and it helps reduce the pain.

After 2 years of being cluster free thanks to very high dose of versacaps, I'm now in pain management phase again, whilst waiting for dr to get me into a neurologist.
Anyone looking for pain options im using the usual naramig and imigran, but due to pbs restrictions found Di-gesic (capadex is the old name) helps a lot,

Posted in Thank you on 27 Aug, 2012 - 11:12 pm

As a cher, I would like to thank those of you who take the time to add tips that work for you, without reading some like redbull, I would not have had another tool to add to the short list, and a big thank you to Ben, who has taken the time to pass on his knowledge and answer some questions to the best of his ability. Although I've been a manner here since 2010 it's only this year I've taken the time to sit and read a lot of the experiances and tricks others use, and I really should have done it b4, as I would proberbly be in a better position now.

I would like to wish you all the best and hope we all find a relief from this condition.

Posted in PARC - Treating Headache conditions in South Australia on 24 Aug, 2012 - 11:49 am

Well done very intersting read, and yes it does give a lot of optimism and hope

Posted in Anyone tried Capsaicin nasal spray? on 20 Aug, 2012 - 10:11 am

The chemist next tO food land on Brighton road ordered it in for me, called at 11 Thursday morning was in by 4:00 same day can't remember the place name peter someone lol good luck, my only advice take abortive b4 using it first few times to to ensure if it makes things worse you only have a short while of agitated condition. Better be on safe side good luck

Posted in Anyone tried Capsaicin nasal spray? on 19 Aug, 2012 - 11:06 pm

Hi Ben, the product I'm trying is called rinar, it's about $40 for the bottle, used it yesterday and today, it stings tastes like crap, for half hour after spraying feels like breathing pepper, but and this is the curious part, pain behind my eye was a 9 when I sprayed it within 5 min it had dropped to a 5, long enough for my abortive to kick in, still a harsh pain but reduced it. So took it again today when pain hit 5 and it reduced it to a 3 and helped the abortive to work faster, still not convinced with it but will give it another go when pain is at a 3 and see what happens.

Posted in South Australia on 18 Aug, 2012 - 5:28 pm

Just tried rinar, a capsicum based nasal spray, it almost immediately relived the pain behind the eye by half but still had pain in teeth and temple, and it didn't really sting too bad, I don't think it's a cure but to remove a fraction of the pain surprised me. I will follow up on the next 1 and report back

Posted in South Australia on 18 Aug, 2012 - 4:09 pm

Would you be kind enough to give me this experts name please, I'm seeing my normal gp on 5th sept n I'll ask for a referral. I'm so over this I know I've been spoilt for the last 2 years with the preventer working so well, but this is beyond a joke now sad

Posted in South Australia on 18 Aug, 2012 - 2:29 pm

Hi buddy, I'm a ex pom too lol, as a abortive med I use naramig, normally taken at first warning sign and works in about 20 min, the preventive med I've been on last 2 years is vermapramil, but sadly my bodies got used to it and not been effective for last 3 months, so looking at other options with the dr, looks like lithium for me now. sad,
Good luck and hopefully this helps