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Posted in Help why is oxygen only working for about half an hour then then cluster comes straight back? on 01 Nov, 2013 - 5:22 am

That's Ok - it is a pretty brutal condition we have. Because I am a remedial massage therapist I know the impact traumatised muscles can have on the rest of the body (back & neck pulled every which way long term can affect knees hips etc and cause other major problems later that I don't want to have!).

Part of my recent change if perspective has been to keep the rest of my body in good condition so that I can better enjoy pain free days (and old age!)

Physio and massage won't stop the CHs but will help support the rest of the body that's being affected. It's sort of like mothers carrying toddlers on the same hip will put 1 hip out - regular massage won't stop it until that posture changes - it's more like maintenance until something changes. It's sort of the same with chronic pain and resulting depression - on that front I'm working on the depression set the moment. Helping the parts of my body I can, getting out more when I can, is part of that for me smile

as is coming back to the forum - here people totally understand! And without judgement or expectation!

Good luck and go green!

Posted in Batch's anti-inflammatory regimen for CH on 31 Oct, 2013 - 3:35 pm

It truly is an eye opener! Thankyou for going to all this effort and compiling your research!!

Posted in Help why is oxygen only working for about half an hour then then cluster comes straight back? on 31 Oct, 2013 - 8:26 am

Oh - and last thought - my Neuro mentioned that if my HA pattern, type or whatever changed that I should have another MRI to make sure that all is still ok up there. Might be worth asking yours. K

Posted in Subconscious Mind on 31 Oct, 2013 - 8:17 am

Hi Katy. I've been a member here for a couple of years but quite absent this year. There was something about looking at the CH differently that has struck a chord with me over the past few weeks. It's actually more about mindfulness than that that our subconscious has latched onto for some reason. It's more about not trying to fight the pain rather than wasting that energy on something that won't help.

Subconcious reactions are very difficult. I know that when I get the first signs that a CH is imminent I react (mindfulness edit - reactED) a certain way (panic, frantic 'no no no' type fright or flight response - with nothing to fight and nowhere to run!). Consciously I know it won't help. But for a while there I have let it win.

This last month or so I've tried to return to riding through the pain rather than trying to fight it. While the pain isn't changing I feel a bit like I'm a bit more powerful than helpless. I'm choosing whether to ride or get dragged by the optic nerve!)

I apologise if my rambling doesn't make sense - your post and another recent one on mindfulness have been exactly what I've been trying to do. My a-ha moment came when listening to a breast cancer survivor who, second time round, looked at the whole experience differently. Anyway - 'scuse my open musings smile it's just such an interesting subject for me! Regards Katherine smile

Posted in Help why is oxygen only working for about half an hour then then cluster comes straight back? on 31 Oct, 2013 - 6:34 am

Ah. I just had another thought. Because this last bout had been so bad I my neck and back muscles have been more traumatised (i even managed to pick a double wood slat bed off the ground on the back of my neck when I was crawling around). So I've had some remedial massage and physio to fix some of the muscle damage I've done. If yours have caused other muscle spasms it might be adding to the constant different headache you've developed. Just a thought anyway. My hubby says it sort of looks like I'm seizing when it happens so we must be affecting our muscles negatively too.

Posted in Help why is oxygen only working for about half an hour then then cluster comes straight back? on 31 Oct, 2013 - 5:54 am

That's not good. I hope the new med combo works for you. I'm back on the steroids at the moment too. 2 pf days in a row after 150 CH in less than 6 weeks. I'm a happy girl! My Neuro is adding Topamax to Verapamil this time so I'll see how that goes. We have no idea what happened cause I had been down to 20-30 CH a month then it went haywire! A change to Inderal did nothing - It was like pre-diagnosis/medication levels! So back on steroids, Ver & a new one. Maybe there's something odd this year!

Posted in Help why is oxygen only working for about half an hour then then cluster comes straight back? on 30 Oct, 2013 - 10:59 pm

Hi. I'm not sure if this will help but do you keep using the O2 for very long after the initial pain has gone? Also, I've heard that some people do have to have a second lot of O2 about 10mins after the first treatment for a better relief after the first hasn't worked. And I guess that for some CHs O2 hasn't worked. I have only just got a mask and am in the process of getting O2 over the next few days so I've been looking into the various ways people use O2 - so others on the forum may be better able to help. Good luck with yours and I hope you find out why its not helping. Regards. Katherine

Posted in I am still here--long time no speak on 24 Oct, 2013 - 12:34 pm

Hi Heather.

I haven't been on for a long time either - but decided to pop back online for a bit of a pick-me-up. I had sort of forgotten the benefits of knowing that I'm not on my own when things get bad.

I'm still chronic - have just tried a new regime of Inderal (which failed dismally) so started back on pred today and starting Verapamil tomorrow - this time the Neuro also wants me to try topping up V with 25-50mg Topamax as well. I figure my brain is already a bit mushy and memory is pretty ordinary with the current number and level of CHs, so it's worth a shot!

At least I know Inderal does absolutely nothing for me - last month back up to over 90 CH and this month 78 so far - same as I was before diagnosis. It got me down a bit - hence the decision to pop in for an online visit for mental health! So not a good couple of months overall. But things are looking up....

I'm looking forward to some of the relief I got on pred last time I tried it. And the Verapamil got me down to 15-20-odd /month which will be great.

A few other changes for me - I took a package last year so no longer have to try to get through a work day locked in the ladies banging my head on the tiles- early retirement has been a relief! I've got my O2 lined up - now just waiting for my mask to arrive.

Time to take charge of the Beast and get some control back in my life!! smile

Good luck to all - Go Green! grin


Posted in Equinox on 11 Oct, 2012 - 10:18 am

Thanks Barry - that will be my mantra while I'm crawling on the floor ...

heheheh (laughing like a crazy person)

(don't worry about maniacal me - it's been a bad week)



Posted in Does a 70% reduction in frequency make me green? on 09 Oct, 2012 - 7:20 am

Hehehe - I like the idea of a third option between red and green Ben (but maybe it would end up being a murky brown?)

Thank Peter

I've been toying with the idea of max-ing the Vit D. Superstitious person that I am I haven't actually done it yet because I've slowly increased my pf days / month and don't want to fiddle!!

The cyst is a sort of fluid filled sac on my pituitary gland (right between the hypothalamus and the pituitary gland - sort of above and between the eyebrows). Apparently most people have them without symptoms and they only are noticed in MRIs when trying to check headaches, for example.

However, I've been a bit suspicious about the 'naaa - cysts in your head don't cause headaches - unless they're really really big...' - which mine isn't. But without an earlier MRI I don't know how long it's been there.


Posted in Equinox on 09 Oct, 2012 - 7:09 am

Hi Peter - I was wondering if there was a correlation between CH patterns (F and I) with the lead up to the longest or shortest day (ie from the equinoxes? equinii?)

Somewhere in the dark recesses of my mind I remember something about CH and hypothalamus function. If daylight / darkness hours affect the hypothalamus to help regular sleep / wake cycles (among other things) perhaps the lengthening or shortening days would show some kind of patterm ....

Hmmmm - but then I am a Sag and have a tendancy to seek out the whys and what ifs... icon

Perhaps that's why I'm fiddling with graphs - just to see if I can make it work.... my son-in-law just rolls his eyes and says 'fa-reak'


Posted in Left or right sided on 08 Oct, 2012 - 9:17 am

My CHs must be ambidextrous - although mainly right.

I have had a few switch RLR during the one CH though, and some are all left. I've even had a couple both sides at once (I know what you mean about these ones Ben - yucko!)

BTW I'm a lefty (handed)


Posted in Does a 70% reduction in frequency make me green? on 08 Oct, 2012 - 9:08 am

2 years! ACK

RE vit D - it was funny that during the diagnostic stage of this process my GP did a full physical and found that the only 2 items that showed up a bit oddly were vit D levels and prolactin levels.

The vit D was within normal, but in the lower range of normal. The prolactin levels were high and unstable between check ups. The GP put me on a daily vit D3 supplement and ordered some other tests for the prolactin levels to rule out tumours etc - including an MRI which showed up a cyst attached to my pituitary gland. However, it is not impinging on anything and eventually was dismissed as the 'cause' of my CHs - rather something I was born with.


Posted in Equinox on 08 Oct, 2012 - 9:01 am

Hi Ben - a good theory. I've often wondered if I get more CHs (frequency or intensity) around the equinox / solstice times of year. Or even if a full moon has an effect on them.

At the moment my reduction in both has been stable for a couple of months now (about 30-35/mth instead of 90-100/mth). I'll have to go back through my diary to see how the pattern looks around the solstice and equinox periods.

At one point I was thinking of making a graph of CHs over a period of months to see if there is any type of cycle happening. But I had trouble working out how to show both frequency & intensity in the one graph. I might need to do 2 and overlay them, with the months along one of the axes.


Posted in Noise triggers? on 19 Sep, 2012 - 8:53 am

Hi Ben

While noise doesn't seem to be a trigger for me, i am less tolerant of some noises during the beginning of a CH - especially adverts!!! But then they annoy me at the best of times!

By the time I'm full blown I am so far inside the pain I don't really notice anything at all around me.

It's like I've gone into a world of pain and there is nothing else there.

Once I'm out the other side I am again less tolerant to noise - but it doesn't make it worse or better.

It's very different when I've got a migraine though - the slightest noise is like a pick banging away. Silence is the best then (if I can get it). Noise, light, movement and smells seem to make the migraine worse (puking during the migraine is pretty ordinary too!)

On that lovely note - Cheers

Posted in Anyone tried Capsaicin nasal spray? on 09 Sep, 2012 - 8:30 am

Thanks BlueDevil

I agree that caution is appropriate ... and that it's hard when you get so desperate to find something that works to remain logical and cautious about what you put in your mouth, squirt up your nose, apply to the skin etc ... ;-)

Take care everyone and good hunting


Posted in Smell triggers? on 08 Sep, 2012 - 2:27 pm

Yep - it does look like a photinia.

RE smells setting off CH - I haven't noticed scent as a trigger for me. BUT I do get 'regular' headaches with certain smells. Usually plastics, some cleaning products (especially chlorine, ammonia or caustic based ones) - things like that. Along with the 'regular' type headache I generally get sore nose & throat and feel nauseous.



Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 2:21 pm

I have used homeopathics for migraine relief in the past, and if I'm quick enough I have been able to abort (or at least significantly lessen) a migraine with belladonna (up to 5 pillules in 15 mins - if that hasn't worked, more won't).

In my early CH days I did try the belladonna homeopathic pillules, but without success for CH. Not surprising as they are different beasts. However, this thread has got me wondering about trying a homeopathic version of capsaicin for the CH type. If I do I'll also post any results.


Posted in South Australia on 08 Sep, 2012 - 8:20 am

Hi and welcome Chele - thanks for the info on Sinol - because I get chronic I don't really have a beginning or an end of a cycle, but it's worth trying the nasal spray at the beginning of a CH! I'll give it a go!


Posted in Anyone tried Capsaicin nasal spray? on 08 Sep, 2012 - 8:17 am

Thanks for passing this on Peter - I'll have a look for Sinol around here!

Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 08 Sep, 2012 - 8:14 am

Thanks Peter

I've gone through my diary to see if I've done anything different - the only thing I've changed is I've been making and eating more plain yoghurt!

I thought maybe the lead up to the equinox/start of spring as I understand some people seem to get CHs seasonally,, but changing seasons have never previously changed my pattern. I had noticed that sleeping in seems to trigger more for the day - so I haven't been sleeping in! Just in case.

I left work about 3 months ago, which I thought may have helped (along with the meds), so I was hopeful.

Who knows though - these CHs seem to do what they like and just when you think you're on the right track they do their own thing!


Posted in 2012 Rolan Lecture on 07 Sep, 2012 - 3:58 pm

I would be interested in the transcript too (I'm in Canberra).

Also, is it worth us as a group coming up with some questions to submit before hand (as per the blurb)?

Not that I can think of any just at the moment - my brain feels like mush.


Posted in Nerve Implant on 07 Sep, 2012 - 3:55 pm

Thanks for the update Matt - did the doc give you an indication of when he'd like to do the surgery or if he wants you to 'detox' first?

I hope it all goes well.


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 07 Sep, 2012 - 3:46 pm

Thanks Matt - as I suspected when I handed my data over to the Dr she has called me in for her next available apt (Monday afternoon). So I'll see what she has to say.

Up until the last week the verapamil has been working really well. But this week I've already had more headaches of higher intensity than I had all last month sad

Oh well - I've had some really good relief over the last few months which has been great!


Posted in The Treatment Roundabout on 29 Aug, 2012 - 10:40 am

Great job Ben - and fantastic choice of sound track.

I'm not surprised that the only people smiling in the pics are the pharmacists


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 29 Aug, 2012 - 10:31 am

Thanks Ben - it's good to know that there are other similar options if they need to take me off the verapamil.

I was please the Doc gave me an ECG before starting any medications at all - so they've got good baseline data to assess how the medications affect my heart function.

Because my BP has always been relatively low, and pulse somewhat high and a bit thready, the docs were a bit concerned about putting me on a med that affects BP, but wanted it closely monitored (hence borrowing the take home BP monitor and getting another ECG).

I've tried not to worry too much about the readings (until they got down to 88) especially because I've been so ecstatic about the efficacy of the drug. But it's still in the back of my mind that they'll take me off it now that I'm consistently below the golden 100 the neuro wanted.

I'll have to see what the doc says when I hand in the results - but I'll take note of the family of meds you mentioned as possible alternatives. I'm not booked in to the neuro again til 1 November and the next ECG is booked for before then.

Thanks again - although its sad that so many have gone on the medication-merry-go-round, I value the information, feedback and support I get from you all.

(and yes, I think you might have mentioned ECGs once or twice icon)

Take care

Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 29 Aug, 2012 - 8:06 am

Thanks Peter - I'll stick to my guns on this one. It's taken ages to get to where I am now and I wouldn't be happy going back.

If they make a fuss, a compromise from me would be to wait til my next ECG check & MAYBE if I have to reduce the dose a bit.

I'm only on 240mg SR / day but because I already had reasonably low BP the neuro didn't want me to go higher without close monitoring.

Thanks again - just thinking about going backwards is giving me palpatations! ;-)

Wishing you green too


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 29 Aug, 2012 - 8:03 am

BTW - I had an ECG this time last year (normal) and am now due for another one as I started the Isoptin 6 months ago.


Posted in Low BP and High Pulse on Isoptin - how low/high is too much? on 29 Aug, 2012 - 7:44 am

Hi All

I was given a BP / Pulse monitor from my GP for a week to take my BP sitting & standing 3 times a day, as my neuro doesn't want my systolic BP under 100 on the veparamil. He also doesn't want my pulse to be 'too high'. Whatever that is. I'm a bit concerned about the results.

About 1/2 the readings are below 100 systolic (one got down to 88/72 with pulse 100) - and my resting pulse rate has been between 72 / min and103 / min.

Now I'm worried that they're going to take me off the only med that has shown to be effective for me!!!! I've even dropped more headaches in the last month - down to just over 20/month.

I've had no low BP symptoms (dizziness, tingling, tiredness, ringing ears) that I didn't have already, pre-medication. The only thing I've noticed is some mild 'racing heart' feelings - which I had previously anyway.

Has anyone else been taken off this medication due to BP / Pulse readings??
Did your CHs come back with a vengence?

I don't want to go back to where I was at the beginning of the year. sad



Posted in Questions; on 26 Aug, 2012 - 4:35 pm

Hi Gunnolf - welcome but I'm sorry you had to come looking.

As Peter said, it is possible to suffer from multiple types of headaches. After several years with CH I've now been diagnosed with chronic CH (although reducing in frequency with the current treatment regime I started in May) and migraines.

Also, a headache diary is a fantastic tool to help notice any changes, triggers, impact of meds etc.

It wasn't until I started the HA diary that I was able to get diagnosed. For me the verapamil (Isoptin) and Maxalt has been fantastic (along with leaving work - I'm sure that helped) - I still average 30/month at the moment but that is soooo much better than 90-100/mnt that I almost feel cured! smile

Good luck with finding a regime that works for you. There is so much support and information with this group and on the site! It's been a great help to me.


Posted in Not good news but getting better on 26 Aug, 2012 - 4:19 pm

Hi Barry - that sounds really positive, and 'feeling well & confident' is always good.
Take care of yourself - Lots of positive thoughts coming your way

Posted in Nerve Implant on 14 Aug, 2012 - 3:24 pm

Hi Matt
Glad to hear the holiday is going well. smile

Posted in Does a 70% reduction in frequency make me green? on 09 Aug, 2012 - 7:46 am

Thanks Peter - that's how I've been feeling - SOOOO much better now! But I agree that either it's on or it's off...

The reduction seems to have stablised at the moment, but I'm hoping for a complete move away from chronic CH! smile

Take care of yourself


Posted in Does a 70% reduction in frequency make me green? on 08 Aug, 2012 - 7:06 am

Hi All - I noticed that Sara is in the green (congratulations) after dropping to 1 CH per night.

So, maybe I should change my status to green too smile

Since I've been on Isoptin and Maxalt the frequency has dropped right down and the number of painfree days per month has increased! YAY

Now I've had 2 months averaging 30 CH / month instead of 90-100 per month BM (Before Meds). It may also have helped that I left work in June so have dropped some of the stress of having CHs in public!

I could not believe the difference since finding 1. a neuro who recognised CH and 2. getting a treatment that makes a difference for me.

If this all makes me green - I'm switching my profile!

Best wishes to all and safe travels to those who are on holidays at that moment!!


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 08 Aug, 2012 - 6:58 am

All done icon

Posted in On the road again on 08 Aug, 2012 - 6:35 am

Hi Heather - I just realised you will have started your Darwin trip already. I hope you're thoroughly enjoying it (even without power!)

Take care and safe travels

Posted in Nerve Implant on 08 Aug, 2012 - 6:30 am

Hi Matt - Thanks for the update on your trip - you're covering a lot of territory up there!
Enjoy and safe travels!

Posted in Tax time - what medical expenses do you claim on 05 Jul, 2012 - 7:25 am

Good question!

I generally haven't reached the threshold for claiming either so haven't put it to the test yet (maybe this year!) - but my accountant said that anything prescribed by the doctor is claimable, including vitamins.

So I'm going to try to claim everything the doc has recommended (including Vit D and non-prescription pain relief) A - because the doc asked me to start taking Vit D due to mild deficiency and B - because I buy the pain relief for a specific illness and it's on my doc's file.

It will be interesting to see what other people have successfully claimed.


Posted in New to this and scared on 27 Jun, 2012 - 9:29 am

HI Lea

Welcome to the group - I'm pretty new here too,. I am sorry that you had to come looking - but glad you found us.

There is a wealth of experience and information both on the site (left info bar) and from members!

Early in my efforts to find out what was going on in my headI was also checked because of the stroke like symptoms (nothing as severe as paralysis though). I also had a number of CT / MRIs to make sure there was nothing in there that shouldn't be in case various nerves were being compressed.

It was some time after all the ruling out tumours, arterial blockages etc that I finally was diagnosed with CH.

Perhaps someone else will be able to provide some information regarding the symptoms you describe.

Kind regards


Posted in Nerve Implant on 21 Jun, 2012 - 12:40 pm

Hi Matt

I'm sorry to hear that things aren't going as well as hoped. It's good that there's no infection on top of everything else though.

Thanks for keeping us in the loop. I'm sorry that there's nothing more I can offer.
Take care of yourself.


Posted in URGENT --Submissions to support application - PBS Botox - DUE 13 JUNE on 31 May, 2012 - 9:47 am

Hi All

I just got this emailed to me - I hope it's not inappropriate to post on this forum, but it's a call for submissions to support a second try at getting botox treatments for chronic migraine on PBS - I guess if it gets up for migraines there is a chance it could be PBS for cluster headaches too.

I've posted the full email below


Pharmaceutical company Allergan is in the process of seeking listing for BOTOX (botulinum toxin type A) treatment on the Pharmaceutical Benefits Scheme (PBS) for the prevention of headaches in people with chronic migraine who have not responded to, or who cannot tolerate, current medications.

The first submission was unsuccessful; however a resubmission will be made for review at the July 2012 meeting of the Pharmaceutical Benefits Advisory Committee (PBAC), who make recommendations regarding PBS listing.

During the review process, the PBAC welcomes input from patients and their families, carers, members of the public, health professionals and members of consumer interest groups. These submissions provide real-life accounts of how the medication under consideration impacts individuals' lives.

Public submissions will be received for a two week period between 30th May and 13th June 2012. Comments can be made using an electronic form available from the Australian Government website:

On the form, in the field "Medicine to which submission relates" type:
BOTOX treatment for chronic migraine.

This form can be submitted online or printed and sent in via fax or posted to the PBAC Secretary using the contact details below.

Website information:
The PBAC Agenda can be accessed at the following website:

The electronic submission form is available at:

Contact details for the PBAC Secretary:

Mail: PBAC Secretariat
MDP 952,
Department of Health and Ageing
GPO Box 9848
Canberra ACT 2601
Facsimile: (02) 6289 4175

Yours sincerely,
Gerald Edmunds
Secretary General
Brain Foundation and Headache Australia

Posted in Botox--here I go! By Dusker on 29 May, 2012 - 11:26 am

Hi Heather

I hope all goes well for Missy and she doesn't feel too miserable when she gets home. Will that be this afternoon?

I've booked my little black kitten in for 12 June so I know how you feel. They are our babies too.



Posted in preventative meds on 29 May, 2012 - 11:22 am

I know what you mean Heather! I'm thoroughly enjoying them when they come around.

You don't realise how bad it's become until you get a couple of good days in a row - my brain was no longer mush!


Posted in preventative meds on 29 May, 2012 - 10:14 am

Well - I don't want to jinx anything, but it seems the verapamil could be helping! Even at the current pretty low 80 mg / day.

My CH are less intense, with fewer really bad ones, and I've already had a few pain free days!!! Including a 24 hr straight pf session, then 1 mild 2-3 CH, then another 24 hrs straight! And I've had to use the Maltax once which seemed to help more than anything I've tried in the past few years.

Later this week they're checking my BP before increasing the dose to 120mg/day, and next week maybe 160mg depending on how things go. And BOC has already been intouch with the prices and arrangements for O2 - now I just need to source a non-rebreather mask and I'm ready to roll.

I'm wrapped - 60 CH so far this month and 5 pf days (all up) is so much better than I've had since I've been keeping track. The relief has been tremendous.



Posted in Nerve Implant on 29 May, 2012 - 10:04 am

Hi Matt - just to say I'm thinking of you and good luck with the specialist tomorrow.

Posted in Nerve Implant on 25 May, 2012 - 8:54 am

Good luck with the botox appointment today Heather!

Posted in young family on 24 May, 2012 - 3:25 pm

I'm sorry to hear you're having such a hard time at the moment. I understand about not wanting to be on a bus! It's one of the reasons I stopped taking public transport a couple of years ago. At least I can pull off the road and hide in the car for a while!


Posted in preventative meds on 18 May, 2012 - 10:23 am

Hi Peter

RE your question - 'Katherine, i've not heard of verapamil being used to break a chronic sufferer; has your neuro been successful in the past with this treatment?'

I don't know - at the appointment he commented on how rare CH is and that he's only seen a couple. I didn't think to ask if they were chronic / episodic, or if he's had success in the past.

He only mentioned that verapamil was a first line med to try.


Posted in Cluster headache and other trigemino-autonomic cephalgias. on 18 May, 2012 - 10:17 am

Hi Pete

I ended up having to ask the neuro for the note on oxygen. He was happy to do it, but it wasn't in his mind as an option without me asking.

Good luck at the appointment


Posted in preventative meds on 17 May, 2012 - 9:28 am

Good question Donna

I also wondered (in anticipation) whether I would need to continue to take the verapamil long term.

My neuro is using it to try to break the chronic nature (3-8 HA almost every day for over 3 years) at this stage. He said I need to continue to take it whether or not I have a break in the 'cycle'.

I'm not sure if the same advice will apply if I get into an episodic cycle.


Posted in My meds seem to be working on 15 May, 2012 - 9:39 am

Hi Improving

Good to hear you've been noticing results - I hope you continue to get relief!

My neuro only just prescribed verapamil (preventive), maxalt (abortive) and provided a note for oxygen - so it's a bit early for me to notice an improvement.

Seeing your post I'm hoping for noticable improvement within a few weeks too ;-)



Posted in Cluster headache and other trigemino-autonomic cephalgias. on 10 May, 2012 - 10:20 am

Interesting - thanks Leslie

This looks like what my neuro used to confirm the first treatments/preventive meds to trial.


Posted in Imigran on 10 May, 2012 - 9:26 am

Hi Blue Devil - RE the 'government authority' business -

Yesterday the neuro had to ring someone and give an authorising code or number over the phone. He had to provide a verbal reason for prescribing the medication and had to complete a form with the same details (no. & reason) on it. Then gave me what appeared to be a normal script.

He said that the type of medication it is is listed as requiring his authorisation code to prescribe it.



Posted in Imigran on 09 May, 2012 - 5:05 pm

Thanks for the heads up on the wafers.

I ust got back from the neuro and, now having a confirmed diagnosis, these were something he's prescribed (along with verapamil and a note for O2). 3 wafers in 24 hrs is the maximum he also mentioned, so i plan to be very cautious.


Posted in Switching sides in the middle of a HA???? on 09 May, 2012 - 1:07 pm

Thanks Heather

I had noticed that some references to O2 are for scripts and others are notes of requirement (or the like).

My GP wasn't clear on the requirements as she hasn't needed to recommend O2 for HAs before. Although at least she is aware of it as a treatment - infact it was her first comment after a neurosurgeon made a tentative diagnosis of CH and migraines (fun fun I get both). So I was pleased she'd heard of it before.

I'd much rather go down the O2 path before trial and error-ing various meds. I get so confused when I'm reading everyone's experiences with the different drugs prescribed


Thanks again


Posted in Switching sides in the middle of a HA???? on 09 May, 2012 - 12:26 pm

Hi All - just had a very weird thing happen and wonder if anyone else has experienced it.

Today I was 'enjoying' my regular CH type morning...

7:20-7:40am - Right - level 5 (late getting away to work - AGAIN)
8:50-9:50am - Right - level 2 (peaking at 3-4 about 9:30-9:45am)
10:20-11:40am - Right - level 2 (increasing to 3-4 by 10:45 AND switching LEFT for 10 mins!!)
11:55am-12:15pm - Right - level 2-3

So in the middle of a 3-4 CH the pain eased on the right and appeared on the left - it felt pretty much like an instant switch. Then after a quick 'stab' in the eye I was completely pain free (and eye & nose stopped running) for 15 mins before it switched back to the right.

My HAs are mainly right, but I do get them on the left occasionally. But I've never had one switch in the middle of the pain!

I'm on no medications (except for mersydnol forte - but taken none today) and haven't done anything different today to any other day. I'm pretty much chronic with a couple of pain free days a month (eg : Jan - 99 HA, Feb 105 HA / 3 pf days, Mar 72 HA / 2 pf days, Apr 84 HA / 2 pf days).

So I'd be interested to hear if anyone else has had a weird side-switching double-banger like this.

Katherine (in Canberra)

PS - today I'm seeing the neurologist! Hopefully I'll get some kind of script for O2!!! smile

Posted in 4 years on 24 Apr, 2012 - 10:01 am

Hi Donna - and Welcome - I'm also a newby to this group and still learning a lot!

Funny you're asking about BP - I've been thinking about it over the last few days as recently as mine has gone up - from usually hovering around 100/60 to 127/90. For me, that's a pretty big increase. (I also flush down one side of my face and get a red hot ear)

I've put it down to BP increasing due to pain. I mentioned it to my drs but because my BP isn't high they don't see it as a problem. I think a sudden change from what is normal for an individual is worth considering as an issue - even if it's still within the 'normal' range.

Welcome again


Posted in 4 years on 19 Apr, 2012 - 11:37 am

RB is one I'm going to give a go too.

The other day I had 4 level 7s in 3 hrs... If I could have got off the floor & been able to speak I would have called the ambos - by the time each one eased off I wasn't too bad so didn't want to bother them.

But then I might not have been able to get to the fridge for the RB either.

Not a fun day overall sad


Posted in Dihydergot (Dihydroergotamine) on 19 Apr, 2012 - 9:08 am

Hi Heather - good luck with the botox. Only a couple of weeks to go.

Posted in Results from the United States Cluster Headache Survey on 11 Apr, 2012 - 1:37 pm

Well - that might explain why these seem to have become so much worse when I became 'peri-menopausal' a few years ago - although my hormone levels in blood tests appear very normal and not menopausal.

Something to raise with the doc as well.


Posted in Idenitfy with CH symptoms :-( on 11 Apr, 2012 - 10:38 am

Thanks Heidi

My GP has been really good - first one to actually listen to me and start getting me into various specialists. Once CH was suspected by one of them (very recently) she has said that if it's CH then we can try O2 - I think this would be a very good option to try for pain relief without the side effects of the drugs.

I really only get a few pain free days every month or so and it's been like that for the past couple of years sad so O2 would be a great longer term option if it works for me.


Posted in Idenitfy with CH symptoms :-( on 11 Apr, 2012 - 10:07 am

Good luck with the new work on Monday!
Hope it all goes well

Posted in Help :( on 11 Apr, 2012 - 10:05 am

Hi Jodie

Again - Sara has said it all - this is a great network with great resources.

I would only add that if you have no one you can talk to, the women's health nurse may be able to suggest a counsellor at the same clinic. They are usually able to help you sort through options for financial assistance and the like.

Accessing financial assistance would take some of the money stress off - and like Sara said - that's what its there for! At the moment it might be a bit too hard to try to start a business working from home.

In terms of what others are doing for work - I'm currently in the public service. I'm finding it difficult to manage but have an excellent boss who is understanding when I have to leave early, come in late, take the day off, go to 'investigative' appointments etc. I'm not sure how long that will last though.

It seems taking 4 months long service leave last year didn't make any difference with the number of headaches. Although hubby thinks they have increased in intensity and frequency since I've been back at work - that might be only that I've been keeping a diary and he's seen a few of the really big ones which scared him! Previously he hadn't been around when they hit.

Take care

Posted in Idenitfy with CH symptoms :-( on 11 Apr, 2012 - 9:55 am

Hi H

That was my reaction to finding the site too! It is a wonderful resource and support network. I don't have anything to add to Sara's suggestions. And if you or your parents are in the public service there is an Employee Assistance Program that is supposed to be very good - and very confidential.

I'm still working my way through tests to diagnosis and eventually some treatment / pain relief - so early days for me. I've heard Dr Andrews here is very good.

Good luck


Posted in Results from the United States Cluster Headache Survey on 11 Apr, 2012 - 9:47 am

Thanks for the link Leslie - very interesting findings!

One of the findings that stood out for me was under 'Aura issues: aura with cluster headache is equally common in both sexes, but aura duration is shorter in women. Women are much more likely to experience sensory, language and brainstem auras.'

I had been thinking that the language issues I have with a CH was the level of pain making it difficult to concentrate on finding the right words and eventually speaking anything but slurred garble! Perhaps its part of the episode rather than a side effect of the pain....

The language issues (along with the puffy, leaky eye) is one of the things that my husband notices early on.


Posted in Tens Machine on 04 Apr, 2012 - 10:37 am

Hi Matt

Thanks for the 'heads up' on the TENS at Aldi
I'll have a look - even if it doesn't work for the CH, I also get migraines and I've heard it does sometimes work with them.

For $50 it's worth the experiment!


Posted in Second Opinion on 01 Apr, 2012 - 10:54 am

Thanks Peter and Ktulu

Posted in Second Opinion on 31 Mar, 2012 - 5:34 pm

Yesterday I went to the GP and got hold of the neurosurgeon's written report - he said 'suspected migraines and cluster headaches'. And the GP said 'in that case we can try oxygen as a treatment'....

Yippee - I'm so happy I could cry - not because of the pain .... just because I'm now getting somewhere with a diagnosis and treatment!

So in answer to your question Red, it looks like the neuro is diagnosising.

Have a good weekend everyone.


Posted in Second Opinion on 30 Mar, 2012 - 1:50 pm

Hi Red

I still haven't got a diagnosis - started 'complaining' about the headaches about 4 years ago. One of my old GPs didn't even blink an eye when I asked if it was OK to take about 48 paracetemols a week.... (he said it wouldn't hurt me as long as I didn't take more....)!!!! Now I hardly bother with medications. Ice packs & head banging & panting etc to get through. If I have too many big ones in a day I take the mersyndol fortes.

Thanks to a HA diary I have 'proof' of 98 HA in Jan, 103 HA in Feb and 70 in Mar (so this is a good month smile )

Here's my trip down the diagnosis trail with a new GP:

- Started with a new GP in Sept 2011

- got an MRI booked in Oct 2011 & got referred to a neurologist when a 'cyst like structure' showed up in my pituitary gland, but he wouldn't see me til I got an all clear from a neuro-surgeon. GP also referred me to an opthalmologist to make sure my optic nerves were OK.

- Feb 2012 got an all clear from opthalmologist

- Mar 2012 finally saw the neurosurgeon (surprise surprise - he said nothing he can do, unlikely to be the cyst causing the headaches & see a neuro) Now still waiting for a neuro appointment.

- in 3 weeks I go to Sydney to see a rheumatologist because with a few other symptoms on top of the headaches I could be having an auto-immune issue (like SLE Lupus).

I'm heading off to the GP again this afternoon. She's been really good - and while she hasn't been able to provide a diagnosis, and won't prescribe much without one - she's the first Doc to actually take my pain seriously! (Does help that I've had a few minor episodes in her clinic so she gets to see some level 4s - weepy swollen red eye, slurred speech and all!) She's even taken to giving me standing medical certificates regarding my 'chronic headaches currently under investigation'.


Posted in Second Opinion on 27 Mar, 2012 - 4:20 pm

Interesting RE Mersyndol Forte - I also use them. I agree that they don't stop the pain, but do seem to help me cope better.

I've been wondering if it's the 'calmative' component of the compound. I've taken a similar 'calmative, analgesic' type compound and found the same thing - doesn't stop the pain but does seem to help somehow.

Maybe it's a psychological effect - but if it helps me cope I don't care!


Posted in 4 years on 26 Mar, 2012 - 2:31 pm

Good luck with your appointment.
I'm still working my way towards some kind of diagnosis - lots of dr and specialist appointments over the last few years!
Katherine (in Canberra)

Posted in Botox can help! on 27 Feb, 2012 - 9:25 am

Good luck with the shots next week.
Does it take long for them to take effect after you have the injections?

Posted in Ride for Awareness on 16 Feb, 2012 - 3:20 pm

[sorry - just realised someone else had already identified the IASP info]

Posted in Ride for Awareness on 16 Feb, 2012 - 2:08 pm

Hi All - Only new here and working my way through the posts on the ride.

It's a great idea - I'll see what I can give. At the moment I don't plan much ahead [no pun intended] - and definitely not a 5-7 day bike ride

But I'm probably able to support in other ways. Including spreading the word, putting up posters, wearing the T-shirt... whatever.

Also, the IASP website on the Year Against Headache campaign lists events at

Tell Us About Your Event
If you are organizing a meeting, symposium, pain camp, workshop, or any other event relating to the Global Year Against Headache, tell us! We will list your event information on this page so everyone can participate. Send your pamphlets, programs, posters, and/or pictures to our Global Year Team at

If you would like some tips on how to organize a Global Year event, download the Global Year Event Checklist for ideas.

If so, it might be worth listing the ride (once details are known).


Posted in An alternative anyone on 16 Feb, 2012 - 8:58 am

Excellent resource! These are the types of things I need to consider.

With another health issue I have I can't take anything ergotamine or most of the calcium blocker type drugs (plus a whole lot of other things are on the 'bad!' list).

There are some on the meds list on this site that are on the 'OK' or 'Maybe OK/in-conclusive' list for Acute Intermittent Porphyria. But its going to be trial and error.

I'm talking with my Dr about O2 though as well. All trial and error!

And I know what you mean about dentists Barry (27 Dec) -

One I saw was telling me how he could help, how much it would cost, and the headache spiked while he had a finger in my mouth..... at least he didn't sue for injury - but he did charge me $90 for doing nothing while his assistant tried to calm me down before I left.

That was when I thought I had giant abcesses etc in my upper molars....


Posted in A different episode on 15 Feb, 2012 - 10:14 am

Hi Andre - most of my episodes include those sensations (temple, cheek, eyebrow bone etc) plus eyeball muscle ache (as best as I can describe it). The differences for me are onset times (eg no real pattern) and duration (anywhere from 20mins to hrs).

RE a significant difference in sensitivity did happen about 2 years ago where I also had a 4-day numbness on half my face (all the skin from the middle of my forehead down, and a bit into the scalp) after a particularly bad bout. That led me to the first CT scan (very scary - I'd never heard of CH at that stage and was thinking stroke-territory with the droopy eye & difficulty speaking etc). I haven't had the extensive numbness since (touch wood).

Over the past few years I've considered those sensations you describe as the shadow - they are pretty much associated with every headache for me. Although, now looking at the 'intensity scale' thing on this site, I guess what's referred to as shadow is a bit different.

Posted in Energy Drinks Oxygen & others on 15 Feb, 2012 - 6:55 am

Thanks Matt - I'll print this off and take it with me. Last year I switched GP and this one seems pretty good (ie willing to listen and start investigating). Since I've had her in about August I've had full blood tests, the MRI, referral to a neurologist (who asked me to be referred to a neurosurgeon) and opthalmologist. I got into the neuro within 4 months which apparently is pretty good. I think that's only because the GP rang them a few times. I'll go back to the GP in the meantime with your list!

Posted in CH in the ACT on 14 Feb, 2012 - 7:03 pm

Thanks Heather - I'm also taking hubby to all apts cause he gets to see what happens externally (and it's only been more recently he's seen me with full blown tipping the scale ones).

Posted in Energy Drinks Oxygen & others on 14 Feb, 2012 - 6:49 pm

I think I'll be giving energy drinks a go! Sounds like a lot of people benefit from them.

Because my GP is running me through tests and specialists at the moment all I've got are icepacks and migraine tablets... anything is worth a go.

I tend not to take the tablets because they don't work quickly enough (or well enough - but when I'm having 3 or 4 CH within a few hours almost back to back, 2 mers forte will give me an hour or so break before the CH cracks through again) sad

I'm starting to think I'll take my GPs advice and go to the ER - but without a firm diagnosis I worry that the HA will be gone by the time by hubby gets me there and the Drs will think I'm making it up.

Posted in CH in the ACT on 14 Feb, 2012 - 4:33 pm

Thanks Andre and Heather - Especially for the suggestions on where to start!

I've been trying to keep some kind of 'headache diary' - so that I can see someone armed with a record. I've only kept it since Dec - Over the past couple of years it's been easier to record the few pain free days I get a month than the number / type etc per day!

I've got an apt lined up with the Neurosurgery Unit at Canberra Hospital in a few weeks - a neurologist wouldn't see me and asked me to be referred to a neurosurgeon 'cause it seems I've also also got a pituitary cyst (showed up in an MRI - wasn't there 2 yrs ago). I think the neuro just wants to be sure there's nothing else going on in there.

Tonight I'll start working through the info on the left! Thank you again

K smile

Posted in CH in the ACT on 14 Feb, 2012 - 10:33 am

It's great to have found this site (not great that it's needed by so many people sad but I don't feel like I'm going crazy all by myself)

I'm still in the 'being diagnosed' stage of chronic daily CH symptoms (well - daily being almost daily, with about a few days headache free a month or so for years).

No treatment or specific way forward for me - yet. But I'm hoping.

I'm in the ACT (Australia) too so am interested in the process and experiences here.

This is my first visit to the forum so I will introduce myself properly shortly smile