Greetings from the antipodes

View previous topic View next topic Go down

Greetings from the antipodes

Post by pīwakawaka on Sun Mar 11, 2012 11:13 pm

Where do I start about my migraine history? I'd like to start at the beginning, but I'm not sure where that is as I've had a few major changes in the way my migraines manifest themselves over the approximately 50 years I can recollect having them.

I first recall having what were probably classic migraines without aura in my early teens, although I probably had them earlier as I don't recall thinking I had some new illness. I suspect they had just become much more frequent and lasted much longer than previously. Migraines were very common in females on my mother's side of the family so it was simply accepted that what I had was migraines (although there is no recorded history of migraine in male family members. By the time I was 14 I was getting migraines once or twice a month and the headache would last between 4 hours and a day. The headache would be accompanied by extreme nausea and vomiting and also photophobia and phonophobia.

This pattern continued into my late twenties when the severity of the headaches became less and the nausea became almost non-existent and the photophobia and phonophobia became marginally less severe. The frequency of the migraines increased to at least weekly, but the duration was normally 6 hours or less and seldom completely debilitating. The biggest inconvenience was that it was difficult identify the difference between the onset of a migraine and a headache as I no longer got the nausea as a warning of a migraine.

Then in my early forties the symptoms gradually started to change again. Although I had been having minor visual disturbances previously, they started to get more pronounced. Objects would disappear from view and I would see what I can only describe as raindrops distorting my vision. I would sometimes have a premonition of an upcoming migraine up to a day before the the aura would appear. The intensity of the migraines also began to increase and with it came increasing degrees of of confusion and clumsiness. I also came increasingly aware that I was missing blocks of time over the past 2 decades.

I was just about to reach 50 when there was another major change. I became very tired and exhausted, developed a tremor on my right hand and a general weakness on my right side. All movement became slow and deliberate and I had trouble walking in a straight line. I was unable to work for 4 months and every test the medical fraternity threw at me turned up negative. I eventually returned to work for a few hours each day and then a few weeks later I had a severe migraine attack - so severe that I have no recollection of it. A work colleague found me shaking violently, unable to stand or talk coherently and rushed me to a nearby accident and emergency centre. There I was diagnosed as having a severe migraine attack and they gave me an Imigran injection. I was back to almost normal within half an hour although I have no recollection of the entire day. However, the next few days I felt better than I had in years, and when I told my GP that a few days later, he wondered whether my problem over the previous months might have been some type of migraine. He put me on Sandomigran. The symptoms I had been having disappeared, I felt on top of the world and I returned to full time work.

Within the next 12 months I had left my job of 33 years, started my own business and felt I had extra confidence and stamina and migraines were under control. I also also started gaining weight. Unfortunately, what I thought was a new confidence and assertiveness, others perceived as aggressiveness. In a matter of 2 years I had changed from being a gentle, thoughtful lanky guy into an aggressive, impulsive fatty. Finally my wife put her foot down and declared it was either her or the medication - I could have one or the other, but not both. At the time I was ready to choose the meds, but other family members finally convinced me to at least try giving them up for a little while. Thankfully I did and within a few weeks I recognised that what I had thought was being assertive was being aggressive and obnoxious. I still cringe at some of the things I said and did during that time. One of the worst was was spending my life's savings on a business that was doomed from the start. I was the only person not able to see at the time. Once I was off the medication, it wasn't long before I realised I was pouring money into a bottomless hole. Apparently aggression and a false sense of well being is a rare but documented side effect of Sandomigran.

Over the next few years the migraines became more frequent and the symptoms displays during each attack became more variable and extreme and every medication tried either didn't work, or the side effects were so severe that I wasn't been able to continue with them. Over the last five or so years the symptoms have remain much the same. In some ways I'm more fortunate than many other members of this forum in that after a severe migraine attack I have little or no recollection of it, and for that I'm grateful.

These days I get migraines from daily to weekly and they can last from a few hours to days. Severity can be from minor (light, sound and movement is unpleasant, staggering gait and getting tongue tied) to severe (violent shaking, drooling, stroke-like symptoms, and fugue-like states - I have been found staggering about not knowing my name or address over 10 kilometres from home).

So that's where I am now. The only medication that works well I'm not prepared to take as it turns me into a monster. Currently I take Cafergot as an abortive although I am severely restricted on how many I can take per week and it is only about 50% successful - about the same as taking a home brew of aspirin, paracetamol and caffeine. I take life one day at a time and am grateful for each day I can see a rainbow or enjoy the laughter of a child or the affectionate hug of my wife of over 40 years.

May the rest of the day be kind to you.
avatar
pīwakawaka

Posts : 272
Join date : 2012-03-11
Age : 68
Location : New Zealand

http://anotherspectrum.wordpress.com/

Back to top Go down

Re: Greetings from the antipodes

Post by Tee on Sun Mar 11, 2012 11:58 pm

Hello and welcome... our first member from down under x

That was in fact a very nice story - You certainly have been through the mill; but you sound like you have reached that acceptance stage......... but I am sorry to read that the medication messed you up so much... the side effects of these drugs can be so horrid.

Your story (in the pattern) sounds very much like my own - its sounds like you have Hemplegic Migraine now - have you had this diagnosed?

I am a HMer and it is not a nice form of migraine at all - there are a lot of people on here with it..... I had a massive one 6 yrs ago and only this year am I managing to get some life back - its a long story and its been a long journey of learning how to control it.

What other preventative mediation have you tried? Do you know your tiggers?

Tee x

PS Its a gift to see that rainbow and feel that hug............. its the one thing that this illness can give you - it slows you down to a point where you appreciate what's going on around you xx

_________________
I love you “Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship.” Buddha[/color][/i]
avatar
Tee
Admin

Posts : 1887
Join date : 2011-04-14
Age : 47
Location : Whitstable, Kent

http://migrainetalk.forumotion.co.uk

Back to top Go down

Re: Greetings from the antipodes

Post by pīwakawaka on Mon Mar 12, 2012 12:08 pm

Thank you for the warm welcome.

Yes, medications can be nasty. I liked the attitude of my previous GP: "all medicines are poisons, but some have good side effects". I think this is so true. I believe I have tried every medication available under our health system, both preventative and abortive. They either were ineffective or the side effects were in the "stop taking this medicine if...." category. The few that were effective and with non-serious side effects such as Maxalt Melt (rizatriptan) became less effective as time went on, until it wasn't worth taking them, or I suffered rebound headaches as I approached the maximum recommended dose.

The best diagnosis so far has been "Atypical migraine", which seems to mean that my symptoms don't match any of the standard categories closely enough to fit. The neurologists I have seen under the public health system have been quite open in stating I'm an unusual case, but there's little that can be done inside the system.

I have seen one highly regarded neurologist privately at the cost of over 2 weeks wages per consultation and he was less then helpful. For example he insisted that auras NEVER lasted more than 15 minutes even when I insisted mine were often more than 2 hours. He said that memory loss was not possible during migraines unless it was a TGA, which is extremely rare, seldom occurs more than once or twice to an individual and typically lasts less than 5 minutes. At one consultation he suddenly ordered my wife and brother from the consulting room for no apparent reason. This added to my stress level as I was suffering a really painful attack prior to the 3-hour journey to see him, and had been a drooling zombie for most of the trip. On reading his case notes which we got several months later, he had decided to expel them as he thought their presence was making me agitated. He had made no attempt to ascertain if I was having, or recently had a migraine.

I don't know how the public health system works in the UK, but here, to be seen by a specialist means you need to be put on a waiting list first. To get on to the waiting list you need to earn a certain number of "points". The number of points determines the urgency. If you don't have enough points so that you need be seen within 6 months, then you can't even get on the waiting list. You are simply referred back to your GP who is supposed to monitor your condition and make another referral if your condition changes. So the only time I have been able to see a neurologist (I don't think there are any migraine specialists in NZ) has been when there has been significant changes in my symptoms. Previous changes have been when the system allowed 12-month waiting lists and I would fall into the 6-12 months category. Now that the maximum waiting time is 6 months I wonder if I would qualify at all.

So the only time I get to see any one other than my GP is after an acute incident where my symptoms are very stroke-like and I've been rushed to hospital. Even then I'm unlikely to get more than one follow up before being referred back to my GP. I've even had an MRI scan dome privately a few years ago when I finally admitted to myself that I was loosing large blocks of time. But at roughly 3 months wages for a scan, going private is way too expensive.

No good looking at private health insurance as even when I did have it, migraine was excluded as it was a "pre-existing condition".

After 50 years we still haven't been able to identify any food triggers except possibly red wine. But as I don't like red wine, that is not a problem. I do know that my migraines are more frequent in summer I detest the harsh summer light here in NZ and stay indoors as much as possible in Summer. Winter on the other hand I love. I find storms exhilarating and like nothing better than to go outside for a walk during a good storm - especially if there's lightning. When I was younger I would go bare footed but I'm a bit more sensible these days Smile . I've just recently discovered that changes in barometric pressure can be a trigger so I'm about to start tracking that to see if it has any relationship with my migraines.

I have identified one trigger that is guaranteed to cause a migraine. Supermarkets have warm toned (slightly red) fluorescent lights over their meat displays. If I look at the displays, even for a few seconds, an aura appears and I feel I am separating from my body. It's definitely the lights and not the produce as only occurs where the warm lighting is. One supermarket has the same lighting over the salmon display in the fish section and I get the same effect there. Our local butcher uses standard fluorescent lighting and I'm not affected there. I've also noticed that other strong coloured fluorescent lighting can induce the same effect, but it requires a longer exposure.

I have always accepted that migraines "just happen" and have got on with life the best I can. However, those I love have a harder time living with it than I do, especially over the last 10 years. My wife, especially, gets very stressed out and even angry at times. It's been hard on her since she had to become the primary breadwinner at the age of 50. One of the reasons I went searching for support groups is to try and find ways of helping her cope better with me.
avatar
pīwakawaka

Posts : 272
Join date : 2012-03-11
Age : 68
Location : New Zealand

http://anotherspectrum.wordpress.com/

Back to top Go down

Re: Greetings from the antipodes

Post by Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum