Where did last week go?

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Where did last week go?

Post by pīwakawaka on Mon Apr 29, 2013 10:53 pm

A week ago last Sunday I went to bed early as I began to experience that "spaced out" sensation I frequently experience immediately before the onset of a migraine. This one came on incredibly quickly, and I remember being concerned about how quick the transition from good to "out of it" was progressing. I knew I had to make myself safe before I did anything foolish, and I thought rightly or wrongly, that the best way of doing that was to put myself to bed. I woke up on what I thought was Monday ( the next day), only to learn that it was Saturday.

Although I sometimes loose blocks of time during a migraine, this one seems to have been different. As best as I can work out, I spent the entire time in bed. My wife had goon to stay with our daughter for the week, and when I failed to make several scheduled phone calls to her, she became concerned, and called our son (who lives in a nearby town) to make sure I was okay. He wasn't able to raise me by phone, so he came to check on me on Thursday, He wasn't able to get my attention by knocking or ringing the doorbell, so broke into the house and found me still in bed. None of us sure whether I had had anything to eat or drink since Sunday evening, but I suspect not. My son managed to get me to drink plenty of liquids as I was probably dehydrated. My wife broke her holiday early and arrived back on Friday. I slowly returned back to normal during the later part of Saturday morning.

While I feel guilty for cutting short my wife's break (she certainly deserved the break), I am concerned that I am becoming a greater burden to her. I also hate the idea that I might not be capable of independent living. That's quite scary. I'm seeing the doctor next week, and to be honest, I am dreading the outcome. Loss of independence is probably what I fear most. I would love to shrug it off as just an unfortunate set of circumstances that's unlikely to happen again, but for everyone's sake, I don't think I can. I am usually an optimist, but this is one occasion where I can't find any reason to be one.

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Re: Where did last week go?

Post by Sarah on Tue Apr 30, 2013 8:46 am

That is incredibly scary. You poor thing. Sad You must have been incredibly dehydrated.

Sorry to say this, but are you sure it was a migraine and not a mini stroke?

Best of luck with the doctor. I'll be thinking of you. x
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Re: Where did last week go?

Post by pīwakawaka on Tue Apr 30, 2013 6:36 pm

Sarah wrote:
Sorry to say this, but are you sure it was a migraine and not a mini stroke?
As confident as I can be without even yet another MRI, but I will be discussing that possibility with the doctor.

I have had similar episodes in the past lasting for up to five days, where I have been hospitalised and subjected to MRIs, EEGs, ECGs, x-rays, spinal taps, and who knows how many other tests. The best diagnosis to date has been "atypical migraine".

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Re: Where did last week go?

Post by Sarah on Tue Apr 30, 2013 10:08 pm

It does make you realise how little they actually know about migraine, doesn't it? And how varied they can be in individuals.

Best of luck with the doctor.
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Re: Where did last week go?

Post by pīwakawaka on Wed May 01, 2013 10:41 am

Sarah wrote:It does make you realise how little they actually know about migraine, doesn't it?
Doubly so in NZ. We are poorly served when it comes to neurology in general and as far as I can fathom there are no migraine specialists at all.

The last" specialist" I saw refused to believe me when I told him my auras lasted over an hour. He even wrote in the report that they "lasted up to fifteen minutes". Scream In other words make my symptoms fit the classic description.

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Re: Where did last week go?

Post by Sarah on Thu May 02, 2013 10:43 pm

There are no words really! It's truly the sign of a bad doctor when they decide to disbelieve patients just because they don't fit the norm.
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Re: Where did last week go?

Post by pīwakawaka on Fri May 03, 2013 2:10 am

And to think that I had to travel half a day and pay the equivalent of two week's wages for each consultation! This particular specialist is one of the most highly respected neurologists in the country.

I guess that for me, one of the most frustrating aspects of it all is that although I have been admitted to hospital many times over recent years with migraines, every episode seems to be treated in isolation: different doctors, no follow up, etc. Sometimes I wish I had someone I could call "my neurologist", instead of the current feeling of being passed from pillar to post.
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Re: Where did last week go?

Post by Sarah on Sun May 05, 2013 1:27 am

I know what you mean. I got referred to a neurologist via the maxillofacial consultant that I was seeing for my TMJ disorder. The neurologist then acted surprised and annoyed that I was attempting to 'diagnose' my own migraines. In the end I had to say that I was diagnosed with migraine approximately 25 years previously and I most definitely wasn't there for an initial diagnosis. The whole appointment was an utter waste of time.

And every time I ever went to see the TMJ people (who have just discharged me, saying there is no more they can do), I saw someone different.

How are you feeling now? Have you recovered OK from your missing week?
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Re: Where did last week go?

Post by pīwakawaka on Thu May 09, 2013 9:24 pm

Sarah wrote:How are you feeling now? Have you recovered OK from your missing week?
Back to my "normal" self, although I did feel especially grotty for a few days.
I saw my GP on Tuesday and showed him my migraine diary. He made the rather obvious observation that I has more migraine days than migraine-free days. He's booked me in for another CT scan as it's several years since the last one. Had the usual physical and blood tests and apparently I'm very healthy (apart from the migraines).

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Re: Where did last week go?

Post by Sarah on Fri May 10, 2013 12:54 am

Best of luck with the scan.
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Re: Where did last week go?

Post by pīwakawaka on Fri May 10, 2013 8:09 am

Thanks. I'm going to need it in several ways. Waiting for a scan through the public health system could take forever. In fact it would be unlikely that I could get it inside 6 months, which means I'd simply be referred back to my GP for monitoring and not even get on the waiting list. I'm simply not sick enough at the moment to get priority.


I really can't afford to go private, as our only income is from my wife's part time job. So the doctor is trying to wrangle it so that I can have the scan done privately but paid for by the health system. I've got my fingers crossed that he can do it.

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Re: Where did last week go?

Post by koifish66 on Tue Jun 04, 2013 5:42 am

Did you get the results? I hope every turned out for the best, praying for you and your family, best wishes.

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Re: Where did last week go?

Post by pīwakawaka on Tue Jun 04, 2013 9:53 pm

Hey, this is NZ. Unless a condition is life threatening, there's always a waiting list - even if one goes private. It's just that private waiting lists are generally shorter.


I'm still waiting.....

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Re: Where did last week go?

Post by pīwakawaka on Mon Sep 09, 2013 9:45 am

I thought it was time to update this thread. Still haven't got an appointment for an MRI.

At the time of seeing my GP, I asked about the possibility of there being a psychological factor to the migraines. I asked if it was possible that the memory loss and fugue states could be a "coping mechanism" for dealing with the difficulties that migraines caused. He did didn't think so, and said he would book an MRI.

My doctor must have had a change of mind, as out of the blue I received an appointment from the mental health unit of the regional hospital. The first visit was simply an evaluation study, and on the second visit I saw a Dr G - a psychologist.

The consultation lasted a little over an hour and he picked up on the fact that I become quite hyper, even reckless, on the day before I get a bad migraine. He prescribed clonazepam as it apparently acts as a mood stabiliser and an anticonvulsant.

I saw Dr G 2 weeks later and the dosage was reduced from 0.5mg to 0.25. Although I had had almost no headache, the other migraine symptom had continued much as usual, but I was in an almost constant state of confusion. Also I was having short, but rather frightening hallucinatory experiences. With the new dosage, the head pain returned.

On the third appointment with Dr G, I was apparently having one of my usual episodes. I have no idea how I got there (it's about a 40 minute walk from home to the local clinic), and most of the appointment is a blur. My wife came to pick me up and it was arranged for me to be the subject at one monthly group conference for psychologists.

In mid August I attended the conference. Dr G had discussed my case with the group, then I was interviewed by them. The interview lasted about an hour, perhaps longer. After I left they were to discuss my case. I saw Dr G about a week later, and the conclusion was that I had no psychological problems. I'm not sure if I am relieved or disappointed. I mean, had something been identified, there was a new avenue to explore, which might have lead to a positive form of treatment. On the other hand, being diagnosed with a mental health problem results in being stigmatised in many quarters.

I saw Dr G a week later. One thing he mentioned is that my last MRI, taken about 4 years ago, is not normal. He doesn't know what effect (if any) it might have on my migraines as it's not his field of expertise. However he said he doesn't understand why the neurologist didn't consider the scan unusual.

He has referred me to the neurology department. He mentioned that the hospital is back to their full muster of 3 neurologists. They've been down to just one and sometimes none for much of the last few years.

On Friday I received a notice from the hospital neurology dept. advising me that I have been referred to them, and that although my case is semi urgent they are unable to give me an appointment at this time. I guess the good news is that I'm likely to be seen within 6 months. I'd have been referred back to my GP if that wasn't the case.

One point I have found interesting. There were 23 psychologists at the conference. All from within the hospital's region. Apparently this is less than half of the psychologists in the region. There are only 3 neurologists covering the same region. And they deal mostly with trauma cases and the treatment of head injuries. No wonder we migraineurs get a poor deal!

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Re: Where did last week go?

Post by Sarah on Mon Sep 09, 2013 7:19 pm

How interesting. I think you're right about mental problems causing people to become stigmatised. I'm no expert, but I find that once a mental health problem is diagnosed, it starts being touted as the cause for all symptoms. So in many ways I'm glad they concluded what they did.

I do wish they'd hurry up with this MRI scan, or at least to reconsider the one from 4 years ago. Really hope you get your appointment through asap.
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Re: Where did last week go?

Post by pīwakawaka on Tue Sep 10, 2013 11:20 am

Actually, I don't remember now whether it was to be an MRI or CT scan. However, I think it's irrelevant now. I don't think I'm likely to get either until after I have been seen by a neurologist and they review my case.

I've had several MRIs and CTs over that last 15 years and there has been "no significant changes" over that time. I gather from that that they mean there has been some changes but they don't think it is a factor in my migraines.

I've seen quite a few neurologists over that time, the majority of whom were relieving due to a shortage of neurologists. I often get the feeling that whenever I see one of them, they haven't seen my case records and we start off from scratch each time. Before he/she get familiar with the case, they are gone and replaced with someone new.

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