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Posted in Old anti-inflammatory thread on 07 Apr, 2013 - 2:35 pm

Thanks Ben
I've spent today digging around options for this regimen and have just been to the health shop to stock up. D3 only available in NZ at 1000IU max, so I may be rattling by the time I've dropped a few of those down my throat along with all the other bits and bobs.
Won't let me add any more than this. Keeps giving me the error.

Posted in Old anti-inflammatory thread on 07 Apr, 2013 - 2:11 pm

Oh....I had a big response typed out but it won't let me post...error 404

Will keep trying...good thing for Ctrl A, Ctrl C, Ctrl V and wordpad

Posted in Old anti-inflammatory thread on 07 Apr, 2013 - 11:22 am

Is there anyone here that has had success with this regimen in treating either chronic or episodic paroxyml hermecrania?
Be interested to know.

Posted in Chronic paroxysmal hemicrania on 26 Nov, 2012 - 3:24 pm

Ben, a well deserved break too. Thanks for all the information. Ive got an appointment with my GP on Thursday, earliest I could get in. This time, I will be armed with extra information. I will also do more reading up on prednisone. I haven't had any side effects yet, but then up to now I've just been doing short shock treatments of a few days at a time, nothing long term.

Heather, you are right, I do hide this from my family now, (parents/sister). I've given them information, I've talked to them about it, they still don't get it, so it's easier to just withdraw and deal with it on my own. They have, in the past, seen the pain I am in. They can't seem to understand that there is no miricle way of curing or treating them.

My son is really good. He has grown up with me having them and knows there is not much he can do except keep at a distance but be there if I call him. Usually, he will bring me an ice pack and a glass of water then leave the room, then once I come out of hiding will ask me if I'm ok and if there is anything I need. Usually, its just a hug, then some reassurance for him that I'm ok and they aren't going to kill me.

I've learnt over the years to manage the pain reasonably well and know what works for me at the time of an attack.... I still lose the plot sometimes when I've had enough even though I know full well, that I'm best to go somewhere cold, breath through it and relax as much as I can. The more I stress, the worse it gets. What is difficult for me is the constant headache I have between attacks, this is so draining and because I'm so exhausted after a couple of weeks of this, it gets harder to manage the attacks.

But anyway, Ben has passed on some great info, so will present this to my GP when I see him. Might even email it through to him so he can do his own research before I turn up....

Posted in Chronic paroxysmal hemicrania on 25 Nov, 2012 - 5:23 pm

Thanks Ben...some big words in there that my brain currently struggles to comprehend. It's a bit fried at the moment due to dealing with these severe attacks for the last few days and a lack of sleep, but I will print this off and take it to my doctor.

The only abortive I have found is prednisone.....I call these my little pink happy pills. They have been a life saver but the effects are short-lived and soon after coming off them another cycle starts up. Long term use has never been discussed for some reason. A close friend of mine gets prednisone injected every couple of months then is on a daily low dose (2.5mg) for rheumatoid arthritis.

The verapamil you mention, I have used before as a preventative, it worked for about a year. Nuero gave me this again earlier this yeat but it had no effect.....I have about six month supply sitting here if anyone needs it.

Hopefully an indomethacin trial for me in the very near future. Knowing my luck it will be one of those expensive drugs that isn't subsidised but then it appears to be widely used in NZ for rheumatoid arthritis so here's hoping.

Thanks again Ben, you have been most helpful. Here's hoping you have yours under control soon too.

Righto, off to curl up on the couch and try and get some sleep. Yes, I know it's still early but I havve to try and sleep when I can during a cycle as I never know how much I'm going to get. Can't wait till I can actually lie down in my bed to sleep, it's been a while.

Posted in Chronic paroxysmal hemicrania on 25 Nov, 2012 - 6:55 am

No need to apologise for the's all great information and very much appreciated.

My gut is already pretty buggered with all the drugs that have been pumped into it over the years and I'm on omeprazole at the moment which helps stop the acid reflux I was getting.

You are right, imigran doesn't really help. By the time it kicks in, the attack is over anyway and it doesn't last long enough to prevent the next attack.

The difference I see with my symtoms which points me towards CPH is the frequency and length of attacks. It appears CH are less frequent but each attack lasts longer where my attacks are very frequent but shorter. All the other symptoms are the same, droopy eyelid, watery eye and nose, the intensity, sweating etc. The other difference I see is that I have a constant headache between attacks.

With my headaches, during the worst of the cycle, I'll take two paracetamol and two ibuprofen every four hours. Yes, I know this far exceeds the recommended daily dose but I'm beyond caring. Given the frequency of attacks, this reduces attacks from nearly hourly to approximately 3 hourly and seems to lessen the intensity but only slightly.....the downside to this is, I feel spaced out, and have no energy for the week where the cycle is at it's peak and my stomach lining is trashed! But this is the only thing I have at the moment that still allows me to function. Being a single parent, I need to be able to. Luckiy my son is a bit older now so when it comes to daily tasks like cooking, he is able to do this for himself. Housework doesn't get done though!

I was only up 3 times last night with attacks, compared to 5 the night before, that's a good sign, generally means I've hit the peak and I'm on the way down again. What I do now, is lengthen the time between doses of painkillers, so today will stretch it out to 5 hours between and see how I go. I hate taking them and can be very stubborn in doing so but sometimes you just have to do what needs to be done to get through.

I'll try get in to see my GP tomorrow and see what he says.....fingers crossed. I'll keep you posted on progress!

Ah crap, now we are having aftershocks again!

Posted in Chronic paroxysmal hemicrania on 24 Nov, 2012 - 3:09 pm

Brilliant, thanks Ben.
Both GP's and Neuro's here have no idea what they are dealing with when it comes to CH. As far as my GP and current Neuro are aware, I am the only case they have seen here in Christchurch.

I was diagnosed with CH only after many years of suffering and that was only because I did research and took information to my GP.

I have been quietly suffering lately as I feel like a burdon. My family really don't understand either even though I have given them information. I constantly hear from them that "there must be some way of treating your headaches" and "surely something can be done".

I've given up on trips to A & E as they just tell me to take a couple of panadiene and sleep it off. Have you ever tried lying down when you have one of these headaches? Yeah, not gonna happen. I pace around, yelling, crying and litterally bang my head against the wall, this creates a different pain which on the scale of things is far more bearable.

When I was episodal, I would have several cycles a year, each lasting 2-3 weeks. The first few days, headaches would last between 10 and 30 minutes and occur several times a day, gradually increasing in intensity each time until after a few days, I hit the peak where every attack would be extremely intense, then after a few days of this, the intensity would gradually reduce down to nothing but still with multiple attacks each day. Then I would have a few weeks of nothing, then it would start all over again. Now, I still have the wave effect but no "rest period" in between cycles.

In my mid 20's, Verapamil worked for about a year, then just stopped working.

Being pregnant was also another temporary relief but once my son was born, headaches were back with a vengaence. Thinking that the headaches may have been related to hormonal changes, I got the depo-provera injection which stopped headaches for about 18 months and then became ineffective.

Anyway, vent over...... I'm going to request Indomethacin on my trip to the GP and see what happens.

Thank you so much for the information. Im going to try and get a couple of hours sleep now.


Posted in Chronic paroxysmal hemicrania on 24 Nov, 2012 - 12:22 pm

That sounds so much like me.. All these years and I've been told it's CH, maybe not after all.... Not sure that I've tried Indomethacin. I've tried so many different things now that I forget what I have or haven't had.

The last two years have been the worst for me out of 25 years of dealing with these headaches. The headaches became chronic as opposed to episodic nearly two years ago. I have between 10 and 14 attacks a day now each lasting 20-30 minutes and there is a constant (annoying) headache between attacks. Currently the only thing that will abort a cycle is Prednisone. Taking 80mg at the onset, then 60mg the next day, then 40mg the following, then 20g for 2-3 days. This gives me relief for about two weeks, then we start all over again. I'm exhausted.

Thanks for the info, off to the GP for more prednisone this week, might see if he will let me try Indomethacin and see what that does......

I'll try anything!

Posted in on 04 Jun, 2010 - 4:52 am

CT scan showed no back to the drawing board for me! I hate having to take all these drugs to keep the demon at bay!

Posted in on 01 Jun, 2010 - 4:20 pm

I kind of hope they don't find anything but then I kind of hope they do. Past CT scans I've had were at times when I didn't have a CH at all so hopefully having the scan done with a CH might show some abnormality! Hopefully will hear back tomorrow!

Posted in on 01 Jun, 2010 - 5:54 am

Well‚ yesterday I had a call from the hospital asking if I could come in for a CT scan. I said yes‚ when do you want me there! Within four hours I was lying in their flash new CT scanner with a level 3 CH! Results will be a couple of days and I'm sure hoping that they find something abnormal!!!! Will let you all know once I hear back.

Also‚ verapamil seems to be keeping the CH at bay‚ not completely but at least manageable. There is the odd day where I may need to take a couple of pain killers just to get a bit of relief but that is far better than overdosing myself like I have been. Will be talking to my GP to see if I can up my dose of verapamil to see if it stops them completely! I'm on 120mg daily at the moment‚ I think last time I was taking verapamil I was on 240mg daily so hopefully it shouldn't be a problem.

Posted in Untitled on 01 Jun, 2010 - 5:50 am

Welcome Luke.
glad you have found us and that you now know what it is you are dealing with. Hopefully armed with this information you can go to your GP and hopefully find a treatment that works for you.

Check out the links on the left side of this page‚ there is heaps of helpful information in there and is always a good place to start especially if you GP hasn't encountered CH before.

Keep in touch and let us know how you are getting on.


Posted in Quiet lately on 18 May, 2010 - 7:46 pm

Oh Heather‚ that's no good. Unfortunately‚ I think I have spoken too soon also as have had a telltale shadow hanging around not sure that the verapamil are working again. I've been on them 10 days now so would have thought if they were going to work then I wouldn't be starting another cycle!

I do hope you get something sorted with your neuro! You are right‚ it's not good enough‚ it's not fair on any of us to have to go through this all the time....I often say‚ "I wouldn't wish this on my worst enemy". It would be so nice if there was a sure fire cure but as well have all proved‚ what works for one‚ doesn't work for another! Also‚ as i've found something may work but then stops after a period of time.

Isn't it just so frustrating!

Hang in there and good luck with the neuro

Take care and talk again soon

Posted in Quiet lately on 17 May, 2010 - 6:01 am

Hi Heather
Glad you are well. Yes‚ the prednisone makes me feel a bit shaky too (especially as I already suffer from anxiety)‚ however‚ the benefits far outway any side effects that I've experienced. I've just come off another round of prednisone‚ this time it knocked the CH after 2 days! For me‚ it's a godsend! My GP advised that I start a course when the CH get up to 6-7 intensity but I started taking it when I was up to the 3's. This seemed to stop them much quicker and I've found that I can lower the dose and shorten the duration of the course. Also on verapamil now so with a bit of luck that will prevent any more CH for the time being (fingers crossed).

Anyway‚ pleased you have managed to get on top of things and are able to enjoy some pain free days! Hope it keeps up!

Take care

Posted in on 09 May, 2010 - 9:22 am

About time for an update I think.
Have had CH continuously for the last four weeks but have managed to keep them at bay with the prednisone. Low dose 7 days at a time. When the cycle starts I start a course of prednisone‚ this kills the cycle but I still have lots of 1's and 2's and these continue for a few days and then start ramping up again. When I get up to the 3's and 4's I start the prednisone and the routine goes round again.

I now have stomach ulcers (Yes Peter from too many paracetamol) so am on Omeprazole for those. The ulcers have been causing constant heartburn and indigestion. I usually only get heartburn after a damn hot curry or too much pastry! I'm avoiding paracetamol as much as I can.

I've also been put on verapamil at my request as this has worked in the past as a preventative. Just started this today so will see what the next few days brings.

I'm pumping so many different drugs in (daily - two citalopram for anxiety‚ two omeprazole for ulcers‚ one verapamil and two prednisone) that I rattle when I move but desperate times calls for desperate measures but at least the CH are so mild that I am still able to function. That's always a bonus!

@ Heather‚ sorry you have been through hell again (I told you stay away from that Red Wine) but glad to see you are on the improve!

I hope everyone else is pain free and enjoying life the way we should be able to!

Anyway‚ better go and do stuff while the CH's are allowing me too.

Take care all

Posted in Untitled on 09 May, 2010 - 7:46 am

Hi Cat‚ welcome to the site. Glad you have found us.

Posted in Clusters whilst pregnant on 20 Apr, 2010 - 5:50 am

Hi Patch
For me personally pregnancy was a godsend as not one single CH reared it's head while carrying my son. This is how we worked out the my CH are due to a hormone imbalance.

As for what medications can/can't be taken I don't know and would highly recommend discussing this with your neuro/gp.

Posted in Untitled on 16 Apr, 2010 - 3:27 pm

Interesting that you link anxiety with CH. I have suffered General Anxiety Disorder (GAD) for the last 12 months following mental exhaustion from stress at work. Since suffering GAD‚ my CH have worsened both in frequency and intensity. Still trying to find a medication that keeps my anxiety under control. Currently on citalopram but I don't think it's doing it's job as I ended up in hospital on Saturday as my whole body was shaking as though I was having a seizure and ruling out all other possibilities‚ was diagnosed as an anxiety attack. I felt like an idiot for turning up at hospital to be told‚ it's only anxiety but honestly‚ with new symptoms that present themselves (like this one)‚ I don't know if it's anxiety or something more serious and this has landed me in ED several times.

Posted in on 16 Apr, 2010 - 3:22 pm

Hi Benny
Feel free to use my short story to send to your boss. I was hoping that it would provide "non-sufferers" with an insight into exactly what we are going through‚ so if you think you can use it to get the message through then go for it.

Heather‚ I might give the imigran another try‚ it aborted an attack last time I used it but was told that I could only have two injections in a 24 hour period so decided that it was not sufficient for me. I've read here somewhere though that some people only take a smaller dose‚ allowing them to use more frequently. I have also tried them in tablet form which didn't seem to have any effect at all. I'm at the point where I'll give anything another go and will try anything to at least even lessen the pain before I end up going totally mad.

Glad to hear that your treatments are doing well.


Posted in Untitled on 16 Apr, 2010 - 3:17 pm

Hi Lyn
Sorry you have to be here‚ but welcome. I know it is such a relief to find this site and know there are more of us out there. It's certainly helped me in so many ways.

Looks like Heather and Peter have filled you in very well so I probably can't add to what they have advised. Just remember that there are a few of us that log on regularly so if you ever need to chat then there will be someone not too far away. Good luck.

Heather‚ re your comment on verapamil losing it's punch. About 10 or so years ago‚ I was put on verapamil as a preventative‚ it did wonders for about 12 months‚ then stopped working. I'm wondering if it's worth me trying again and am going to discuss with my GP when I next see her. If it's worked once‚ it may work again.


Posted in on 13 Apr, 2010 - 5:35 am

Hi Guys
I'm much better now but still a constant shadow lurking with the occasional 2 popping in to say hello but that's gotta be better than how I was a couple of weeks back.

Peter‚ interesting comment re the prednisone and certainly something I am going to query with my GP and also Heather your comments re the pain relief while on prednisone.

The prednisone appears to work for me but takes a few days to kick in and until it does i'm a complete wreck especially when i've been told I can't have anything else other than panadol!

It's not that cold here in Canterbury Peter in fact the weather here has been spectacular for this time of year. I have tried the cold air approach and although this does seem to help a little I still get to the point where I can't handle standing or sitting and end up back to the old pushing my head against something solid. Same with the ice packs‚ although these help a little‚ I still need to put that pressure on my head and don't seem to be able to get the pressure in the right places when I'm trying to hold an ice pack on there too. What I need is a frozen cap that fits over my head and still allows me to apply that pressure....

Anyway‚ best get off to work. Hope you are both well. Will talk again soon


Posted in on 06 Apr, 2010 - 5:08 am

Hi Heather
I've tried imigran and although it aborted the current attack that I was having‚ I had another within the hour. I do try and take panadol every 4 hours as a preventative but I hate taking them so often and some days taking more than double the recommended dosage. These on there own don't seem to do too much‚ it's only when taken with ibuprofen that I seem to get any relief and unfortunately whilst I'm on the prednisone i'm not allowed ibuprofen.

Managed to have a pain free night although didn't sleep much at all and have woken this morning relatively pain free! (still a shadow lurking in the depths) Yeehah! Seems that the prenisone has finally kicked in.

Good luck with your neuro‚ I hope you are on the track to finding a good way of managing CH.

Take care

Posted in on 05 Apr, 2010 - 7:48 pm

Hi Heather
On another course of prednisone which hasn't helped as quickly as it did for the last cycle. Last cycle day 4 of taking pred I was down to shadows‚ this cycle i'm now day 5 and having constant shadows but still getting attacks although not as prequently. Thought I was coming right today when one hit out of the blue. Worst thing is the strongest pain meds I'm allowed to take are panadol whilst on the pred and i'm now sure that the panadol/ibuprofen/codiene combo that I've had before definately lessens the intensity. With only being able to take panadol which I take as a short term preventative i'm sure I'm suffering more frequently and the attacks are far more intense than usual. What I used to call a 10 is now only about a 7 in comparison. I'm only on a low dose of pred so maybe this needs to be bumped up a bit next time round (see i'm not even optomistic anymore....I know there will be another cycle‚ it's just a case of when).

Still no word on neuro‚ 3 year waiting list for public and awaiting approval through med insurance to see if I can go private so it's just sit and wait for now.

Fingers are crossed that a long weekend of doing a lot of sitting around has given me energy to get through the next few days as who knows what they will bring!

I was doing well after the last course of pred which stopped the cycle short‚ then gave me 2 months remission...a far sight better than the constant cycle after cycle I was getting late last year through to Feb this year.

Anyway‚ I hope you are doing ok and staying away from that red wine‚ you do like to punish yourself don't you!

Off to bed now‚ hopefully for a full nights sleep!

Take care

Posted in on 05 Apr, 2010 - 4:37 pm

As I sat eating the dinner I prepared my left eye started to burn. I immediately took two panadol in the hope that I would get in quick enough to at least get through my meal. Seconds passed‚ I could feel the burning sensation in the top of my head and I knew that I was not going to get away from the demon! I left the dinner table and went to my bedroom where I paced quietly and took long slow breaths in an effort to keep calm and keep this one down to a manageable level. Two minutes passed‚ the intensity grew‚ the pain moved to the back of my head! It was like the demon turned on the CH switch and I’m sure he laughed while he did it! I held my head for dear life‚ squeezing in every possible place‚ thumb in my left temple‚ fingers digging into the top of my head and my other hand squeezing my neck as hard as I possibly could.

A few more minutes passed‚ I was pacing more frantically and shaking my head. I was in agony‚ there was nothing I or anyone could do. My son comes in to me “Mum can I get you anything?” he asks‚ so worried and knowing that there is nothing he can do to help but still he tries. I reply‚ “No thanks‚ just leave me alone for a while‚ I’ll come out when I’m ready”.

I can’t take it anymore‚ I start to cry and jump up and down in an effort to beat this. I scream at the top of my lungs “why me?” “what did I ever do to deserve this?” “make it go away” over and over again. I realise that I’m making the CH worse by stressing myself out. I must try to calm down‚ relax and breathe. I go to my bed where I push the top of my head up against that iron bed posts and push so hard that my neck clicks and my spine pops. My left eye is burning and watering‚ I do my utmost to calm down‚ thumb still digging into my temple and my fingers digging into the back of my neck‚ my breathing is quick and short. I start breathing in through my nose‚ out through my mouth‚ long slow breaths. My son comes back into my bedroom “Are you ok Mum?”‚ I reply “Yes‚ I’ll be right soon”.

20 minutes later‚ I’m still pushing my head against the bed posts‚ the pain is slowing starting to subside‚ I’m too scared to move. I remain on my hands and knees putting pressure in all the same places until about 10 minutes later‚ the only pain I can feel is where I am pushing. I now have cramp in my hands as I slowly lift my bruised head (from pushing on the posts)‚ carefully opening my eyes. I move my hands away from where I have been pushing‚ the burning in my eye and the top of my head have gone‚ the pain is still in the back of my neck. I sit on the edge of the bed and breathe a huge sigh of relief‚ another one over.

I eventually stand up‚ my back and neck let out a creaking sigh of relief and walk out to the dining table to finish my dinner. I apologise to everyone for having to leave like I did. I spend the next two hours trying to get things done knowing that the switch will be flicked again soon‚ could be any time‚ I just never know. This CH demon has a mind of It’s own‚ doesn’t care what I’m doing‚ where I am or who I’m with. When it decides it’s time to hit‚ it hits and there is nothing I can do!

Posted in Untitled on 01 Apr, 2010 - 4:16 pm

Hi Steve
I too pop far too many panadol and these do help me for a few days but once my CH gets up past a level 6 I don't even bother with them! I tend to use them as a short term preventative; i.e. take them before the attack starts‚ this seems to lower the frequency of attacks from 1 an hour to 1 every 3 hours. Peter will tell you as he has told me that they are not good for you. My GP prescribes them to be in the hundreds! I'm currently on another course of prednisone which means that I can't have ibuprofen or naproxen sodium‚ these are a couple that when taken with paracetamol can help but only for a couple of days.

Rather than popping the panadol‚ you need to find a preventative which works. As I've just said to Bec‚ i've had a few successes over the years but they only seem to work for a period of time before the CH beats them. There is a list under the medications tab on the left that you may like to present to your GP. This includes preventative and abortive meds and it's just a case of finding the ones that work for you!

Good luck and take care

Posted in Untitled on 01 Apr, 2010 - 4:09 pm

Hi Bec
Sorry to hear you are suffering! From what you have said‚ it could be CH‚ it may not be. It appears that we all suffer differently‚ I think the only real thing we have in common is the intense pain associated with these demons. For me‚ I started getting CH at 15 and my trigger is a hormonal imbalance. I'm now 37 and CH are getting worse and more frequent. Usually I would have 2-4 cycles per year each lasting approximately two weeks. I start off with level 1 headaches and they ramp up over the first few days to 9's & 10's. The 9's & 10's usually last 3-4 days then over then next few days will gradually subside back to nothing. In between CH level 6 and over‚ I have a constant level 1-2 in between the bigger attacks. Each attack can last between 20 and 50 minutes but have been known to last a couple of hours!

Between October 09 and February 10‚ I was having cycles lasting 2-3 weeks with only a couple of days in between. During the last cycle I was put on prednisone (which can have some nasty side effects) for 7 days. I started the pred on day 5 of my cycle when my Ch were at level 6. After a couple of days where I should have been getting up around the 9 or 10 level‚ I was down to getting 4-5's. After 4 days of pred‚ I was down to level 1-2's. I've continued to get 1-2's every day since up until Saturday just gone when a 3 decided to rear it's head. The beginning of another cycle!

I've started pred today with fingers crossed that it works again.

Others here have different triggers and the cycles can also vary in frequency and length and intensity and affective treatments. Fos some‚ imigran works‚ for others the Ch just laughs at it and says no way!

My CH used to be in the right side‚ in my temple. Since giving birth to my son‚ they have moved to the left and were centered in my temple but over the last couple of years have expanded to being also on the top of my head‚ above my left eye (extremely sharp pain) and also in my neck just at the base of my skull where the pain is more like an intense ache as opposed to sharp pain. The pain in my temple is also like an intense ache. Most people can not lie down with a CH‚ I can't lie in bed or on the couch but what I do do is put myself on my hands and knees on the couch and push my head up against the timber framing in the arm of the couch! If i'm in my car‚ I climb into the back seat and push my head up against the solid arm rest in the door! Anything to put pressure on the top of my head which changes the pain.

I would suggest keeping a diary which indicates‚ date‚ time of attach‚ length of attach‚ meds taken (preventative or pain releif)‚ also include weather/temperature and food/alcohol intake to try and identify triggers.

With mine being hormonal‚ I was put on the Depo Provera injection and this worked wonders for a couple of years‚ then stopped working! I've also tried other preventatives which have worked for a while‚ then after a period stop working.

For each of us‚ it's a case of find what works and what doesn't and this can be a long journey of trial and error.

I do hope for your sake that you don't have CH and if you do‚ that you find some meds that help you soon! Drink plenty of water as this can help.

Take care

Posted in Untitled on 06 Mar, 2010 - 7:41 pm

Hi again
Yeah sorry Andy for hijacking your thread. Spose with all this talk about different meds‚ I should really post in the meds thread.

For Peter - yes GP knows that I take ibuprofen and she also had me on naproxen sodium - a stronger form of ibuprofen. I had to stop these two days before starting prednisone and wasn't allowed any of these while on pred. Interesting about the anxiety being side effects of Ibuprofen‚ that's not something I have stumbled across in my research. Will mention that when I see my GP next. Also instead of paracetamol‚ my GP sometimes tries me on paramax (just a stronger form of paracetamol) and brufen (a stronger form of the OTC nurofen). She has also thrown codeine into the mix when I get really bad. I haven't tried Tramadol or topomax. Will suggest these to GP. I'm on citalopram as a preventative for CH but that hasn't had any effect at all but is helping with anxiety so GP is keeping me on it for now.

Thanks for the tips.

Heather‚ I hope you are coping ok with your current cycle and it's not kicking you too hard.

and last but not least‚ Andy. How are you doing? Hopefully you are CH free and life is great.


Posted in Untitled on 04 Mar, 2010 - 4:51 pm

Hi Heather
Yeah it's a bit of a lose-lose situation. Anxiety/Panic & no ciggies or CH with ciggies.

I've tried the imigran tablets but they didn't seem to do anything at all. Seems Prednisone is the one for me for now at least anyway. Still good after stopping the course almost two weeks ago now. The odd niggle here and there and the 3 yesterday but that's ok. I can live with that.

Sorry to hear that you are currently in a cycle. Hopefully you can keep the levels down so that they don't cause too much agony. I wish mine had regular times that they hit‚ that way I could prepare for them but unfortunately they have a mind of their own and come and go as they please. Also‚ when I'm at the peak of a cycle usually days 5 to 10 I have a constant 3-4 inbetween the 8‚ 9 & 10's. I think that's what wears me out so much.

A workmate of mine told me today that her friends son who is in his 20's has just been diagnosed with CH. My reaction was OMG that's awesome! Not for him but for the fact that there is now someone else local to me that is going through the same thing. I've passed on about this website and told her to get him to log in asap to make the most of the valuable information on here. Not sure what meds he has been put on but apparently he has been loaded up with an armful. I'll also pass on my contact details so we can get in touch and he can know that he is not alone. I think that's the worst feeling ever with CH. I felt so alone before I found this site and am so grateful that it has been made available to us sufferers!

Take care. I hope you can keep this cycle under control.


Posted in Untitled on 03 Mar, 2010 - 4:41 pm

Hi Heather

I have considered quitting the ciggies and have tried several times. When I do try my anxiety disorder gets out of control and I end up having full blown panic attacks. Can't breath‚ heart skips beats and feels like every beat it's going to break through my rib cage‚ blackouts‚ hot flushes‚ legs buckling out from under me causing me to fall. Absolutely awful feeling and the cause of many calls for ambulances and many trips to the emergency dept.

As for imigran‚ I've tried this a few times and although it will abort the current attack within about 5 minutes‚ I have always had another attack 20 minutes later. I have been told that I can only have two injections a day so I didn't really see the point in continuing down that avenue when I'm having up to 10 attacks a day during a cycle.

Anyway‚ have been relatively CH free for a few days now so am making the most of this. I did have a 3 today which lasted about 20 minutes but I think that was because I had stressed myself out and not drunk enough water.


Posted in Untitled on 02 Mar, 2010 - 3:19 pm

Hi Peter

Yes I've had discussions with someone here re using regular welders o2 but I'm a bit sceptical about the fact that it's not hospital grade. I might talk to my Company's gas supplier and see if they can help me out as I think they might supply the hospitals too. I did talk to my manager about access to O2 at work but was advised that it would not be in my best interests to try using it.

I know I take far too many paracetamol and end up with a crook gut and wicked rebound headaches but when ya desperately in need of some relief you do what you gotta do. GP is aware of how many i'm taking during a cycle and I do try and avoid them if I can. I only use them if the current trial of prescription meds isn't giving me any relief.

It seems that the course of prednisone that I was on has aborted the cycle and so far no sign of them returning. I've been having days where a 1 or 2 might creep in and linger for a few hours but I don't take anything for those unless they are preventing me from sleeping‚ then I might take a couple of paracetamol. At least at this point in time I am relatively CH free and fingers crossed it stays that way for a while longer.


Posted in Untitled on 01 Mar, 2010 - 3:19 pm

Hi all

I have to agree with you Peter on getting a ball rolling somehow on getting this awful disease recognised and some research done on a professional level rather than us sufferers just going through the trial and error and one day hoping that we find something that might give us some relief! I have often thought of trying to see what I can do to start something like that and have done hours and hours of internet searching in the hope of finding someone somewhere that might be interested in looking into it. I've even contacted the pharmaceutical company that are trialling the pain patches but have had no response from them at all. I guess I'm a little isolated here in NZ with not yet having found a GP let alone a Nuero that knows anything about CH but if anyone does have access to the right channels to get something done I will be the first to jump on the wagon and offer help with whatever needs to be done!

As for access to meds‚ you think the Oz system is wanna try NZ. I can't even get my hands on O2 without a nuero's referral unless I go to the emergency dept. Usually by the time I get seen there it's too late anyway so I don't even bother going! I wanted to try indomethicin but can't get my hands on that either. Strongest otc pain relief I can get here is ibuprofen. If I mix that with paracetamol I do manage to get short term relief for the 5-6s and during a cycle I end up taking this combo every 3 hours to try and prevent. I think this works to some degree as if I go without I tend to have twice as many attacks. It doesn't lower the pain rating though once I'm over a 6.

Anyway here's me rambling on again lol!

Hope everyone is pain free and enjoying life while they can


Posted in Untitled on 26 Feb, 2010 - 2:42 pm

Yep‚ well F me too!
Yes‚ it may work for you but I was only making comment that I had tried deep heat once for a CH and it was probably the worst thing I could have done. I wasn't critising your suggestion of using Dencorub just merely stating that I wouldn't personally go near it based on my experience.

If it works for you then great!

Posted in Untitled on 25 Feb, 2010 - 7:01 pm

Ah I guess Dencorub is like Deep Heat then! If that's the case I'll be staying well away from it! I tried deep heat once for a CH and swore I would never ever go near the stuff again after that experience!

Posted in Untitled on 25 Feb, 2010 - 6:59 pm

Hi Andy
I'm hearing ya! You sound like I was feeling last week! So very very over it all!

I'm sure we all talk to the beast‚ I know I do‚ in fact I yell at it....makes no difference really except I end up becoming really tense which makes the CH worse. After the yelling‚ I then have to calm myself down and tell myself to relax‚ it will go away. How long for‚ no-one knows. For 22 years I've been living with this‚ some years worse than others especially recently.

As for finding the light at the end of the tunnel‚ we are all wishing for that to appear. Unfortunately‚ it's proving a difficult thing to find. What makes things more difficult is that each and every one of us responds differently to different meds so it's all very trial and error trying to find one that gives us relief. GP recently put me on a 7 day course of prednisone which on the 2nd day provided relief in that it dropped me down to a level 2 CH although it was a constant headache all day but far better than the 6-7's I had been getting. Day 3 I was down to a constant level 1‚ day 4‚ down to the occasional level 1‚ day 5 CH free. I continued to be CH free until day 3 (today) after stopping the Prednisone‚ i've had level 1 shadows today which indicates the start of another cycle. Although the prednisone made me feel ill and played havoc with my anxiety disorder‚ I'm keen to use it if it's going to abort a cycle.

Anyway‚ enough rambling on from me.

Hang in there! There will be something out there that can give you some relief‚ it's just a matter of finding out what it is.

Oh‚ and no need to apologise for venting‚ we all need to let off steam every now and then. That's why there is a forum especially for venting!

Keep your chin up!


Posted in Untitled on 25 Feb, 2010 - 4:17 am

Hi Matt
Sounds interesting. Be good to know if this continues to give you some relief. How long did it take to kick in and wonder if it will abort the CH if applied right at the onset.

Let us know how you get on with this one.


Posted in Untitled on 22 Feb, 2010 - 4:16 am

Hi Heather
Yes‚ I've tried many different preventatives‚ currently Citalopram but it doesn't seem to be working much at all. Verapamil was the only one that gave me about 12 months repreive‚ then it stopped working. My trigger is a hormone imbalance apparently. Fluctuations in oestrogen and progesterone. The contraceptive injection Depo Provera was what dropped them down from monthly to about 3-4 cycles a year but it seems this has stopped having an effect also even though we have increased the dosage and frequency of my jab. Alcohol doesn't seem to trigger for me‚ these things just seem to rear their head whenever they feel like it at the moment.

Anyway‚ gotta get to work. Last day of Prednisone today eeek!

Take care

Posted in Untitled on 21 Feb, 2010 - 6:48 am

Hi Heather
It's ok that you weren't around and hope you are enjoying your holiday and your CH free time. I just needed to vent and get stuff off my chest as was extremely frustrated with everything.

GP put me on a 7 day course of Prednisone‚ first day at 60mg‚ then next 6 days at 40mg then just stop. I had read that you are supposed to taper these off but I also spoke to my family pharmacist who said to me that being such a short course I would be ok with how the GP prescribed it. It has made me feel sick to the stomach and my anxiety attacks have sky rocketed making me shaky all of the time and also heart palpitations have returned at night time when I am relaxing trying to get to sleep.

I've been to the ED several times over the years with these only to be told to take 2 paracetamol and go to I don't bother any more. Usually my attacks only last between 20 and 45 minutes so by the time I get there it's too late. My son is 11 and is very understanding when I have a CH and tries to be very helpful (lol sometimes too helpful it becomes annoying). I feel for him having to go through this all the time. It's not so bad when I'm only have 3-4 cycles a year but when it's constant like this he ends up suffering. I called an ambulance the other week as I was in so much pain‚ but by the time they got there I was coming right again. Even then‚ they had no o2 or anything on board that could have helped me. I told them the combination of pain killers I had taken over the course of the day and I got a severe telling off but hey desperate times call for desperate measures. One of the ambo's even said to me "oh I get migraines too"....this got me wound up! There is a complete lack of knowledge here on CH. I've only found one other person in NZ that suffers and she is at the other end of the country!

Anyway‚ feeling good again today (so far). Had a couple of niggles during the night but nothing major. Fingers crossed that I can stay like this for a while! It's funny how much we appreciate CH free days!


Posted in Untitled on 20 Feb, 2010 - 6:16 pm

Feeling a bit better today. Managed to get about 5 hours straight sleep last night. Had a level 1 CH all day with lots of shooting pains lasting about 30 seconds each but that's all good‚ I can handle that!

I'd have to say for me it's more the exhaustion than the CH that gets me down and the fact that when I plan to do stuff I end up bailing out. Social Life ZERO!

I can only get o2 through a neuro here in NZ and to see one is a 3 year wait. Medical insurance won't cover CH as it's an existing condition. We have lots of o2 at work but I don't think the boss will take to kindly to me heading out to the welding bay and sucking on one of the o2 bottles lol.

Prednisone seems to be starting to work finally after 5 days of taking it. GP advised that I start taking it when CH gets to 6 or 7‚ so I did. This is usually 4-5 days into a cycle‚ then I get 9's or 10's for 4-5 days then they drop down again. Since starting the pred i've had lots of CH up to 7's most days so I think they may have stopped the 9's and 10's kicking in. Maybe I need to start the pred as soon as a cycle starts to hopefully eliminate them before they get up to 6. Something else to discuss with GP I guess.

I'm keen to try indomethicin. This will at least confirm if I have CH or CPH which I suspect given the frequency of attacks and the fact that they don't have a regular timing during the day/night. They just appear whenever they feel like it. Unfortunately‚ I cant get my hands on this without a neuro either!

Anyway‚ I'm still hanging in there‚ hoping for a few more days like today so I can regain some energy to fight these bloody things when they come back. This will probably be in a few days as only 2 days left of Pred so I'm guessing once that's out of my system CH will be back!

take care smile

Posted in Untitled on 18 Feb, 2010 - 5:41 pm

Sick to death of these stupid bloody headaches! Over last few months have gone from having 3-4 2 week cycles per year to almost constant! Since October I've had more days with CH than I've had without. GP has me on Citalopram and now Prednisone but these don't seem to be doing a hell of a lot except making me feel sick! I'm so exhausted that I'm struggling to get to work each day. I come home and pretty much head straight to bed to try and get some sleep in between attacks. My poor son is having to cook his own meals as I just don't have the energy. We have missed numerous school events over the last couple of months. He has scout events coming up over the next couple of weeks and god only knows if we are going to make it to them or not. I'm running out of options for med's‚ I've reached the end of the list of med's available here‚ tried various herbal remedies‚ o2 not available. If I had someone to take care of my son I would take myself to hospital and refuse to leave until I had some answers! It's no wonder I suffer from depression when this monster is affecting my everyday life. I just wish I could make plans to do stuff and then actually be able to go ahead and do them but at the moment I just have to take each day as it comes and feel grateful for the times I can go and out and do stuff! Friends have stopped asking me to events coz 99% of the time I bail at the last minute coz i've got a CH or I'm too tired! I so wish they could just understand this. I'm so sick of hearing people say "oh I know someone else that gets migraines". I had an attack at work today and instead of disappearing out to my car like I usually do‚ I stayed in the office and ended up in the foetal position on the floor under my desk rocking back and forth‚ tears pouring from my eyes‚ squeezing my head as hard as I could and eventually banging my head against my desk just to show other work colleagues what I was going through. Several people suggested I go lie down‚ some people ignored the fact that I was in agony and asked me to do a job for them! I've handed out the CH letter to employers to my manager and the first aiders but I just can't get through to them. Sooooo frustrated! I'm at my wits end‚ I've had enough. Just don't know what I can do now!

Sorry for venting just had to get stuff off my chest to people who do understand.

Posted in Pain Patch on 12 Feb, 2010 - 3:05 pm

I so want to help them trial this patch! I wonder if they are looking for more guineapigs! I'll put my hand up!

Posted in Untitled on 07 Feb, 2010 - 8:36 am

Hi Ozekoal
I did a search on Cafergot and found some other names for the Caffiene Ergotamine combination.

Have a look here

There are online pharmacies which claim to sell cafergot without prescription. I did a search on caffeine ergotamine australia and came up with a few. I would discuss this with your medics first though as who knows what dodgy scams are out there!

I have no idea whether these would be available in SA but it would be worth asking your GP or Neuro. Cafergot is still available here in NZ but I'm guessing that if it's no longer being sold in Oz then we won't be far behind in losing it too.

I hope you find some relief‚ I know how hard it is trying to care for someone else when CH hits. I have an 11 year old and although he is quite independant (Has had to learn to be) I still have to feed him and get him to school.

Take care

Posted in Untitled on 02 Feb, 2010 - 6:58 pm

Hi Mr Happy
Sorry to have to see you here but at least you have found us and the load of useful information everyone has to share. I can't help with a GP in Queensland that knows anything about CH‚ I'm having the same trouble here in NZ! After 22 years of CH and experimenting with many various different medications‚ some succesful for a period of time‚ others not‚ I'm still looking for the one! As for pain relief‚ either 2 panadol + 2 nurofen or another one I have found useful is Sonaflam. Only thing with these is they are only effective if the pain is no more than a 5 or 6 tops. Anything over that and a painkiller doesn't even touch the sides.

As Dusker has said‚ you need to be agressive with GP's‚ ED's or whoever you end up seeing for CH. For many years I was told the same old 2 panadol and rest even in the emergency department when I was screaming down the waiting room and bashing my head against the wall! Print off some info and take it with you when you see a GP or end up in ED at least then if you are lucky enough to find a doctor interested enough in helping you you are armed with some information that he/she may find useful‚ if they can be bothered reading it!

Anyway‚ best of luck in finding a GP. Keep your chin up & take care!


Posted in Untitled on 28 Jan, 2010 - 3:40 pm

Hi Peter

Hope you are well.

The script says take 60mg at first sign of intensity 6-7 CH‚ then take 40mg a day for the duration of the headaches or 7 days whatever is longer. I've been given 7 days worth.

I read up on prednisone when I got home from the GP's yesterday and I do agree there are some fairly nasty side affects listed. I haven't filled the script yet but I intend to discuss this with the pharmacist tomorrow when I go in there. He has known me all my life and usually tells me stuff about meds that my GP has omitted to tell me.

Thanks for your warning Peter.


Posted in Untitled on 27 Jan, 2010 - 6:09 pm

Also‚ start a diary of your CH. There is one on this website that can be used‚ link is in the top right hand corner.
This can be useful for trying to find a pattern.

You may also find it useful to record what you have eaten and drunk each day too as I think some people's CH's are triggered by certain foods or drinks.

Posted in Untitled on 27 Jan, 2010 - 6:05 pm

Hi Michelle‚ welcome
I'm sure we have all been misdiagnosed with migraines at some point or another. Have you taken the cluster quiz on the left hand side of this page? This may help you identify if you have CH or not. I've never had a migraine as such‚ but I have a friend who has them often and they are quite different to a CH. A migraine can include disturbed vision‚ feeling sick/vomiting‚ severe headache. A CH is usually characterised by the pain being on one side of the head only and usually behind the eye‚ however‚ mine are on the top of my head‚ above my left eye and also in the back of my head‚ like someone is sticking a knife of something all the way through. Where migraine head pain is classed as severe‚ CH pain is excrutiating and claimed to be the worst pain ever. I've often seen the pain compared to child birth with no pain releif or having a limb severed with no anaesthetic. I can only compare to childbirth and I must say I would rather go through childbirth any day.

You mentioned the contraceptive pill....I have found in the past that this has worsened my CH and increased the frequency. What I did find that helped was the BC injection‚ Depo Provera. This cut my CH down from monthly to about 2-3 times a year for a few years but recently appears to no longer have any affect at all. I'm currently on my 5th cycle since Oct/November 09. My cycles last approx 2 weeks‚ with 8-9 attacks per day each lasting up to 45 mintues on average.

You are right saying that people that don't suffer don't understand. My family who have seen this in me for 22 years still don't get it! They tell me to take a couple of panadol and go lie down...I wish I could!

I too have fears of a tumour and have had CT scans over the years all returning normal results. I'm sure if it was a tumour‚ I would probably not be here typing this message. If it really does concern you then see if your GP will refer you for another scan just for peace of mind.

I have a stash of cafergot here and it works for me when the intensity is around 6 or 7 on the pain scale‚ anything over that and it doesn't even touch the sides. If you look in the medications tab on the left and also the medications forum you will find useful information on different things that people have tried‚ that you may be able to take back to your GP.

As for me‚ I've tried that list of meds plus many many more. Some work for a little while and some don't work at all. Everyone responds differently to different things and I guess till someone actually finds the root cause of CH and is able to invent a med specifically for CH‚ it is all trial and error.

I think most of us are possibly awful people when CH's hit....I know I am and it's usually my son that wears the brunt of it. Luckily he has grown up with me having CH and understands that it's the CH that does it and it's not that he has done anything wrong. He tries to be very helpful like getting me pain killers and glasses of water or an ice pack and I end up snapping at him‚ poor little bugger!

Arm yourself with as much info from this site as you can for your next visit to the GP and be very firm about how you are feeling and what you are going through. I was too soft on my GP for far too long and got nowhere for a very long time. It's only since I've found this site and heaps of very good information that I've been able to get through to my GP. Unfortunately‚ my GP has now put me in the too hard basket and is referring me back to a neuro but hopefully I might start getting some results.

Sorry for blabbing on so much!

Take care

Posted in Untitled on 27 Jan, 2010 - 2:58 pm

Back to the GP today....CH starting to ramp up again‚ started Saturday and now up to 5-6 attacks per day at about 3-4 intensity. Citalopram doesn't seem to be doing the trick. Got my hopes up too soon. Although it is helping with the anxiety so I'm staying on it.

GP has prescribed Prednisone for me to try when I get up to the 6-7 intensity CH attacks....will see what happens.

If this fails‚ she is putting me in the too hard basket. Has apparently been reading up on CH and can't think of any other options to try. Has tried to refer me to a Neuro but couldn't get me in through the public health system. Looks like my medical insurance might finally be put to use to see a neuro through the private health system.

At least I will have loads of info for the neuro when I eventually get there! I've got my theories and want to try Indomethacin but this can only be prescribed by a neuro. At least if I try this I will know for sure if it's CH or Chronic Paroxysmal Hemicrania.

Hope everyone is pain free!

Keep chins up

Posted in Untitled on 21 Jan, 2010 - 2:58 pm

Hi Wayne
That is awesome info re Imigran. I know an imigran injection knocks a CH to the ground for me but I too need more than 2 injections per day due to the number of attacks I can have. I gave up on the Imigran due to this but I might talk to my GP and see what she says.
Thanks for that!

Posted in Untitled on 15 Jan, 2010 - 7:28 pm

Yeah‚ I don't think that smoking triggers a CH cycle for me but definately when already in a cycle smoking can trigger a CH (if that makes sense). The stupid thing is that as soon as a CH is over‚ I reach for my ciggi's‚ maybe a comfort/relaxation thing‚ not sure. I started getting CH about 4 years before I started smoking but maybe smoking is what has contributed to them being more frequent. I have to give them up and soon! I know there are benefits from doing so and if it helps with CH then that's a definate bonus!


Posted in Amendable diary entries on 13 Jan, 2010 - 9:15 am

Would it be possible to make diary entries amendable? I know sometimes when I log an attack I'm not usually thinking straight and I don't put much info in‚ it would be nice to be able to go back when feeling better and add more notes.

Posted in Untitled on 12 Jan, 2010 - 12:57 pm

Hi Peter

Thanks for the tip. I'm still determined to quit and I might try your way when I decide my head is in the right place for doing so. At present it seems to be the only comfort keeping me sane. Unfortunately the depression seems to have decided to visit again as a result of having 4 cycles of CH since October 09 and although the new meds seem to be having an effect I'm sitting here waiting for the demon to strike back. Must think positive thoughts!

My morning coffee and ciggi go hand in hand‚ that's just how it's done. I will give it a go though when I am ready.


Posted in Left or right sided on 12 Jan, 2010 - 10:16 am

Right Handed
CH Left Side but was right side before I had my son. Wish it would switch back to the right side to give the left side a break. I grind my teeth during a CH and the teeth on my left side are falling apart now.

Posted in Untitled on 11 Jan, 2010 - 4:32 pm

Hi Heather
The only trigger I have been able to identify is hormonal imbalance. When I first started on the Depo contraceptive a few years ago my CH disappeared for a few months. Previous to this they were monthly. Over the last couple of years frequency has increased again but certainly not back to every month with the exception of the last 4 months where it seems to be one cycle after another.

I am currently taking Centrum which has various vitamins & minerals but I was more interested in the Vit B's‚ D's Calcium‚ Selenium & magnesium. I'm also taking Omega Plus which has Omega 3 & 6. I've stopped taking the Kava & 5HTP as these are not recommended when you are taking any SSRI meds which I am‚ Citalopram.

After reading about the water treatment‚ I am making a concious effort to drink heaps of water. At this stage‚ I'm not sure which is helping out of the citalopram‚ vitamins or water but this cycle has been bearable down to 2-3 level 3-4 CH a day. Once this cycle is over‚ I will stop the citalopram but continue on the vitamins & water and see what happens.

I've recorded all of my cycles over the last 10 years and these have been given to my GP. The info included intensity‚ time of day‚ length of attack‚ pain meds taken and if I was taking anything else at the time.

One thing I haven't done is keep food records but I have had allergy tests done in the past on known trigger foods which returned nothing. I don't drink any alcohol so I can rule that one out. I am a smoker and i don't think this helps. I was going to quit over the xmas period but with the CH occuring so frequently my anxiety and depression have been creating havoc so I decided that it best not to try and quit while I am feeling so down.

My sleep patterns tend to be pretty regular except when I have CH I can be woken between 4 and 5 times a night which means I only end up with a couple of hours sleep and this can be for several nights in a row. Exhausting stuff! Luckily my son is old enough now to organise himself coz some days I can't do it. Frustrating for him too and this makes me feel even worse. It's been hard over the school holidays for him as I either have had a CH or haven't had the energy to do stuff with him. I've sent him off to stay with his Dad for a few days so I can try and relax and regain some energy before returning to work next week. Now I'm sitting here feeling sorry for myself as I haven't got him here to keep my mind away from the negativity that the CH's create.

Hope you are keeping well.


Posted in Untitled on 10 Jan, 2010 - 4:43 pm

Hi Dusker

Hope all is well with you.

Yes it is comforting to know that there are others out there with CH. Before I found this site‚ I was sure I was the only one. Would be interesting to know if there is anyone else in NZ.

Unfortunately I have to wait for a GP to refer me back to a neuro as my medical insurance won't cover it and nor can I afford to pay for one. My current GP as already mentioned doesn't seem too interested and I can't see her referring me to another neuro‚ hence my wanting to find another GP. I've been searching on the internet for local GP's so if my next visit to my GP doesn't return any positive results I will be going elsewhere.

I had to laugh‚ I have always said that I would never wish CH on my worst enemy but the other day when I left my GP's office‚ I wished she would get one so she knows what I am going through!

I might have to try the twisting the lock of hair technique‚ I push the top of my head up against anything solid that I can find but end up putting my neck out and have to see a chiro to get that sorted.

I've tried lots of diff meds over the years with Verapamil being the only one that seemed to do anything‚ however‚ the effect of that only lasted a year and the CH returned. I'm currently on citalopram which I started taking at the beginning of this cycle and it seems to be doing something. I'm down to 2-3 CH a day and only very mild (3-4)‚ however‚ I do have a constant headache in between (1-2) so that is promising.

Take care

Posted in Untitled on 08 Jan, 2010 - 6:51 pm

Hi Patch
I haven't had any hormone tests done. I think they do have something to do with the headaches. Research indicates that fluctuations in Oestrogen and Progesteren can cause this.

My GP doesn't seem to want to try much at all and I'm in the process of trying to find a new one that understands what I am going through. CH don't appear to be very common here in NZ and there is very little knowledge of them. Most people that I have spoken to have no idea and think it's just like a migraine.

Saw my GP this morning armed with info that I have gathered from here and various other sites but she really wasn't interested. I also included info on Chronic Paroxysmal Hemicrania and the use of Indomethacin to treat this as my symptoms are more like this than CH. Given the frequency of sometimes 15-20 attacks per day lasting up to two weeks at a time and the fact that I prefer to lie down (on the couch pushing the top of my head against the block of timber insde the arm of the couch) but this was also pushed aside.

I suggested a CT scan be done while I have a CH to see what activity is going on in my head but that was dismissed too.

Honestly‚ I'm at my wits end with this and hope to find a new GP soon to try and get some action.

Thanks for the info on the Neurontin and look forward to hearing the results from your tests. Hopefully will provide more clues this this mystery illness.

Posted in Untitled on 08 Jan, 2010 - 12:32 pm

Hi Peter

Thanks for your reply. I've never heard of Neurontin and certainly will be worth a try if the citalopram doesn't work.

I'll try anything!

Posted in Untitled on 08 Jan, 2010 - 12:11 pm

Well‚ where to start. I live in New Zealand and until I found this site‚ thought I was the only one with CH. I have been a sufferer for 22 years and have not yet found anything that will help prevent nor relieve this dreaded demon!

When I first started getting CH‚ I was 15 and was having approx 2 attacks per year lasting 2-3 weeks at a time. This continued until I was in my early 20's where the frequency increased to every month lasting 2-3 weeks so each month I was getting 1 week breather. At 25 I became pregnant with my son during which time I had no attacks at all. Two days after he was born‚ I had the worst attack ever and then back to the usual routine of monthly attacks for 2-3 weeks each time.

I was sent to a Neurologist who was unable to diagnose and tried a series of different preventatives including verapamil‚ sandimigrin‚ and a few others over the course of about 3 years none of which had any real effect.

I eventually self diagnosed to my GP after doing hours of research‚ gotta love the WWW and this self diagnoses was confirmed.

I suggested to my GP that I try a course of Depo Provera (contraceptive) due to not having any attacks during pregnancy‚ I beleived that hormones may be playing a part. The Depo had a great effect cutting the attacks down to approx 3 per year. This has given me some repreave until recently. Since October 09‚ I have had 4 attacks‚ the last one being far more intense than any previous and actually caused me to call an ambulance.

This attack finished on Sunday 03/01/10 and I got two days break. By Wednesday 06/01/10 I was getting attacks again.

After reading through this website and finding some very useful information‚ including the suggestion that Chronic Paroxysmal Hemicrania might be the demon I am dealing with‚ I headed back to my GP. I mentioned this but it was dismissed pretty quickly. I've now been put on a course of Citalopram which I'm not too keen on as it can make you very shaky. I'm already shaky as I also suffer from Anxiety which can turn me into a bit of a wreck some days.

I'm also trying a course of various vitamins‚ including B's‚ D's & C‚ Omega 3‚ magnesium‚ calcium and Kava. So far‚ all this has done has caused me to sit on the toilet for far longer than necessary but i'm sure things will settle once my body adjusts to them.

Anyway‚ that's probably enough of a blurb about me(if you are still reading‚ hope I didn't bore you too much).

I'm just pleased to know that I'm not alone and that there appears to be a great support/information network here!


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