The loneliness of a chronic migraineur

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The loneliness of a chronic migraineur

Post by pīwakawaka on Mon Jul 02, 2012 9:39 pm

I'm beginning to wonder if I'm the only chronic migraineur in NZ. There is supposedly a Migraine Support NZ group, but either the group no longer exists or they don't want me. They have a website which doesn't seem to have been updated since 2007. I get no response from completing their contact form on the website. I've tried multiple times. I have tried emailing a leader of the group to an address provided by Tee (thanks Tee) and to another address I uncovered. No reply. I have also tried phoning, but each time I have got a recorded message. I have left my contact details, but again, no reply.

Finding Migraine Talk has been good, but in some ways it has made me realise how isolated I am when I don't know of any fellow sufferers on this side of the world. Surely I'm not the only one.... scratch

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Re: The loneliness of a chronic migraineur

Post by sarlyka on Thu Jul 05, 2012 9:47 pm

Hi there,

I only found this group a couple of months ago and it's been so good to share the day-to-day difficulties and get advice on medication/treatments.
Fortunately, even though you're on the other side of the world, the internet doesn't notice. Smile

It sounds like the group you're trying to contact is no longer running, or has changed contact details but not updated the website. Are there any suitable groups or forums which you could contact to post a request/question? You may be able to get in touch with chronic migraineurs on fibromyalgia, chronic pain syndrome or even ME/CFS forums.


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Re: The loneliness of a chronic migraineur

Post by pīwakawaka on Thu Jul 05, 2012 11:04 pm

It's possible the group no loner exists, but Tee spoke to a Annette Hallam who is/was a member of the group at the end of May. Tee gave me Annette's contact details in another thread, and I have been trying to contact her ever since.

It seems odd that Tee can contact her, but I can't. I'm only 500Km from Auckland whereas Tee is 18300Km away.... confused

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Re: The loneliness of a chronic migraineur

Post by Laura on Mon Jul 09, 2012 2:46 am

I read another migraine forum and was curious, so I searched "New Zealand" and came up with a thread that includes someone in New Zealand and someone in Brisbane: http://migrainepage.forumotion.net/t3207-newbie-here-hi-from-new-zealand?highlight=new+zealand

Maybe a doctor that you see for migraines could direct you to a local group? I've looked for an in-person migraine support group in my community but have not been able to find one. I'm sorry you feel so alone. I can understand your feelings. But as Sarlyka said, in an Internet forum, your location does not matter.
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Re: The loneliness of a chronic migraineur

Post by pīwakawaka on Mon Jul 09, 2012 10:46 am

Thanks for that link Laura. That's one site I hadn't come across in all my searching on migraines. I'll follow up on that.

I was hoping to get some feedback from Tee, but she seems to have been "missing" for several weeks. I do hope she is okay.

It does seem that the understanding and treatment of migraine varies from country to country, and at best it is poor in NZ from my experience. While in places such as Auckland or Wellington, it might be possible to see a neurologist privately, the cost is prohibitive, and like most people here, I rely on our public health system. I did see one privately a few years back, but he didn't believe the symptoms that I and my family described. His hourly fee was more that I earned in a week at the time and as I had to have someone else take a day off work to accompany me, it was financially crippling.

I have seen several neurologists through our public health system after I have been hospitalised, but in each case the "follow up" has been a referral back to my local doctor for "monitoring".

After my operation in May was cancelled because they wouldn't operate as I had a migraine at the time, I was put on a waiting list to see neurologist. But the technician who did my last EEG told me that it would be months before I got an appointment. At least I know it will be within six months as you can't even get on a waiting list if it's longer than six month.

I haven't even had a classification of the type(s) of migraines I have. In fact my local doctor didn't even know of them. I believe at least some of my migraines are hemiplegic, and it wasn't until I had shown him some literature about them that he realised that the medication I was on was inappropriate.

Our health system has a centralised record system available to all medical professionals, but for some reason they don't seem to know what's in there. When I was last hospitalised, I was prescribed a medication that I had tried twice before without success. I had a bit of a brain fog at the time, but told the neurologist I thought it was one that they didn't do me any good. He looked surprised, but didn't check. A follow up with my local doctor a few days later proved that I had an adverse reaction to it, so the meds were stopped.

Don't get me wrong, our health system is great for 99% of cases, but there are some conditions that seem to slip through the cracks. Migraines seem to be one of them. For that reason it would be helpful to be able to share experiences with others in a similar situation

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Re: The loneliness of a chronic migraineur

Post by Laura on Mon Jul 09, 2012 2:32 pm

So is your "local" doctor a generalist? I can see why you would like to touch base with someone from New Zealand - you'd like to know how others have dealt with the particulars of your health system.

If you join that other migraine forum you would be able to send "redzone" (the person from New Zealand) a private message.
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Re: The loneliness of a chronic migraineur

Post by pīwakawaka on Mon Jul 09, 2012 8:44 pm

I have joined the other forum.

Yes, the "local" doctor is a General Practitioner. Essentially, unless I want to go private, I need a referral from a GP to see a specialist. He will no longer refer me to one as in every previous case, my diagnosis has been identified as non-urgent or semi-urgent.

A little background. A few general elections ago, one of the political parties promised to reduce waiting times for hospitals and specialists, as waiting lists were were growing ever longer. On gaining power, they performed this miracle, not by allocating a bigger slice of the government budget, but by issuing a directive that waiting times were to be no longer than 6 months. If you can't be seen within that time frame the referrer gets the job of "continuing monitoring and evaluation". Neurology seems to be one of those specialities where demand is greater than supply. Hence, unless your need is greater than semi-urgent, you are unlikely to be seen.

It's fortunate that I had a migraine when I arrived at the hospital for my operation. Although it was nothing unusual for me, the medical staff thought otherwise and got a resident neurologist to look at me and I was kept in overnight for observation. By the following morning I was better and I was discharged in the afternoon with a promise of a follow up. Possibly because it was a hospital doctor and not my GP that opened this case, I actually got a place on the waiting list. But I'm just guessing.

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Re: The loneliness of a chronic migraineur

Post by Laura on Tue Jul 10, 2012 4:56 am

So it sounds like you should see a neurologist before the end of the year. That long of a wait is too long - but at least you know you'll be seen before December. Once you see a neurologist, will you be able to go back to him/her within a more reasonable period of time? Is the 6 months just for first time visits? Also, do you know if the neurologist you'll see has any experience with migraine and other headache disorders?

Managing healthcare systems seems to be problematic in many places. What country has a plan with the best "customer" service? I need to move there. I've had my own difficulties here in the USA.

Let us know if you are able to contact another person with migraine in NZ.
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Re: The loneliness of a chronic migraineur

Post by pīwakawaka on Tue Jul 10, 2012 12:00 pm

The wait is for the first appointment. After that it's up to the specialist. He/she decides when/if I see him/her again. I can't simply make an appointment next time I have a major migraine incident. The only way of getting prompt attention would be to turn up at the hospital's accident and emergency centre. That, however, only means you will be seen by a doctor, not your assigned specialist.

I have no idea if he has any/much experience with migraines. I suspect very little as he didn't seem to associate my right side weakness with the migraine.

I think health care funding is becoming problematic regardless of whether it is publicly funded or not. I guess the problem with a publicly funded system such as ours, is that the money goes to where it will do the "most good". In other words, if speciality A can provid treatment to more people than speciality B for the same cost, then speciality A gets more funding (especially in election year Smile )

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