Another walkabout

Had another of my "walkabouts" yesterday, or perhaps in the early hours of this morning. I was f was found staggering about the streets at around 2 am. My wife wasn't aware I was missing until she got a call from the police letting them know I was being taken to hospital. Wearing a Medic Alert bracelet once again proved its worth as I was unable to give anyone any personal details about myself. I don't know if that was because I didn't remember or did know but couldn't communicate as I don't have any recollection of the incident.

In fact, as seems to be common when I go wandering, I can't recall much at all for several days. I'm pretty sure I can remember Wednesday, but after that there are just fragmentary pieces that I can't put in order or completely understand. Since getting home this evening I have learnt that I had a severe migraine on Thursday and Friday, and unusually for me, spent the entire time in bed. On Saturday, I was more like my usual self when having a bad migraine - uncommunicative and irritable, but went to bead earlier than usual.

The first thing I can clearly remember is climbing off the hospital bed in the emergency department and rolling my forehead on the vinyl flooring as it was the coolest thing I could find. I can also remember the extreme discomfort from the bright lights and noise. The longer I was kept there, the more desperate I was was to escape the light and noise. I tried to explain what I was experiencing, but I wasn't able to do so very well. They wanted to give me painkillers to reduce the pain caused buy the environment on the emergency ward, instead of doing the sensible thing and moving me to a darker and quieter location.

The bright lights and to a lesser degree, the noise made the time at hospital a very unpleasant experience, apart from a few hours mid morning when I was in a location where both were acceptable. Again, every time I mentioned the discomfort the noise and light was causing, the "solution was to give painkillers.

I was given the usual battery of simple cognitive and motor tests on arrival, mid morning and mid afternoon. It was during the usual questions about my date of birth, location, date etc mid afternoon that was surprised to learn that it was Sunday and not Thursday as I had believed. I'm no longer shocked when I discover I have lost some time, but it still comes as a surprise.

As usual, all the tests and CT scan at midday returned "normal". I wonder how many CT scans are safe in a single year? I've had 3 abdominal scans and at least 2 head scans as well as 2 chest X-rays and 2 abdominal X-rays in the last 12 months.

One thing I did realise today, and I'm not sure if I understood this properly before or not, but it is this: For me, light and sound don't cause actual pain in the same way the headache does. But they most certainly cause extreme discomfort. So much so that several times I was preparing to flee as fast as I could to anywhere that was less unpleasant. The urge was so great, that of it wasn't for someone happening to attend to me at the critical moments, I think I would have actually taken flight. I think I now understand why these are called "photophobia" and "phonophobia".

How do others experience light and sound during a migraine. Is it more like an actual pain or does it manifest itself more like a phobia as I experienced?

I've 'absconded' from hospital on a number of occasions because they wouldn't do anything about the noise and light. I have a care plan which states I need a quiet, dark room. My local hospital helped to write the care plan yet they are the only ones who refuse to provide a side room - unless I pay for it!

I'm not sure what I can do to make the hospital staff more aware of how distressing the hustle and bustle of a hospital ward (and especially A&E) is. What with being in a rather confused and distressed state and language skills somewhat reduced, I'm not really in a position to assert my need for quite and dark. Perhaps I should keep a card in my wallet that I could show when needed. Not that it would have done any good in the weekend as I wandered off without wallet or mobile phone - only my Medic Alert bracelet, which I wear at all times.

Maybe we need some 'migraine awareness' cards which we can show people when we're in that state. Like you, I am reduced to speaking in one syllable words, usually mumbled because it hurts to open my mouth and use my voice, or I'm about to throw up everywhere. I tend to shut my eyes and clamp my hands over my ears whilst pacing up and down as that's the best way to cope with the pain.

Oh so sorry to read this - a card is a good idea......... if you remember to carry it with you....... I am sure you can get a bracelet that opens up - so you have the basic SOS stuff on the bracelet and more details on paper on the inside x

Just got back from spending several days in hospital.. This time it was for a rescheduled operation for removal of a kidney stone. Elsewhere in these forums, I described how the operation was cancelled due to the fact that I had a migraines at time of admission.

I went in on Tuesday, the operation was supposed to be that afternoon and discharge was to be Wednesday morning. As fate would have it I once again had a migraine when I arrived at the hospital. Although the surgeon was prepared to carry out the operation, the anaesthetist was not.. I was kept in hospital, as the surgeon didn't have a heavy schedule the next day and it was hoped that either my migraine would disappear, or a different anaesthetist could be found. It turned out to be the latter.

This time I was fortunate that some of the nursing staff understood what a migraine can be, They moved me out of the hustle and bustle of a general ward and put me into a single room. My stress level went down considerably. If it wasn't for the fact that I was woken up every 2 hours to have my blood pressure measured and to be asked on a scale of 1 to 10 what my pain level was, I would have had a good night's sleep. Is there really a need to check blood pressure that often

Unfortunately the next shift wasn't so sympathetic and I was tossed out of the room and place in a very noisy ward with very bright lights on my left and the rising sun on my right, and the rescue helicopter depot right beneath the window.

Another thing I noticed was that many of the staff, both doctors and nurses, seemed to talk much louder when they saw you weren't fully participating in the discussion they were trying to have with you. All they needed was to slow down, not shout. They don't seem to understand that one's ability to process language is reduced considerably during a migraine?

I also remember signing several consent forms without being able to read them and without understanding what they were for. Maybe I'm expecting too much from the medical profession, but I would have thought that if I didn't know which hand to use to write with, I really wasn't in a condition to sign something. I don't know how others feel, but when I don't have a migraine, I am almost embarrassed by the lack of assertiveness I display when I have a migraine. I am far from having an assertive personality, but when I have a migraine, I become fully compliant, but otherwise totally withdrawn. I know that this characteristic is what concerns a number of my wider family.

Oh Piwa I am pleased you finally got the operations done - but the way you where treated is really not right............. do you have a PALS system in Oz - an independent board at the hospital which you could talk to - the only way these so called 'professionals' are going to learn how to treat migraine people is to educate them and I wonder that now you are out of the world of migraine if you could talk to them and explain the effects a migraine has and how they should treat people......... I assume you were alone during all this and did not have any support from family who could argue for you?

I hope you are recovering well - xxx

Tee, I'm on the other side of the Ditch*. NZ is not OZ

Yes I was alone during the time at hospital. My wife is the sole breadwinner and she was unable to take time off work. The hospital is in a different town to where we live. And as it was supposed to be just an overnight stay, we hadn't made any arrangements for anything out of the ordinary.

While I can cope reasonably well on "my own turf" at home, I'm reluctantly beginning to accept that I am not really able to manage by myself when I have a migraine in unfamiliar surroundings.

Thanks for the tip about advocacy. No PALS, but a little research lead to the discovery of the Health and disability Commissioner and the advocacy service. I wasn't aware of its existence. I think it might be helpful in a number of ways and not only to redress the way the hospital dealt with me. I'm thinking along the lines of advocating for a well managed and coordinated approach to managing my migraines instead of the ad hoc uncoordinated approach that currently exists.

* the Ditch as a colloquial expression for the Tasman Sea, separating NZ from Australia