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Post  Johnfd on Thu Mar 04, 2010 12:38 pm

Hi, I discovered this forum the other day and thought I'd fit in. Well I've registered now, so thought I'd better introduce myself.

I'm John and live in the UK. I won't give all the details of what my migraines are like or what meds I've tried as that's really boring and you will have heard loads of similar stories before. I'm 52 and have had migraines with aura since my late teens. About 10 years ago these developed into chronic migraine and I've had daily migraine on waking or migraine type headaches for the last 8 years or so. Ho hum. Nothing much has helped in the past but I'm going through the prickly hands and feet stages of starting to use Topiramate. I tried it once before without success but apparently we didn't give it long enough so here's hoping this time.

Anyway, there's much more to me than a chronic illness. I'm married with three grown up kids, a biker into classic bikes who likes to be outdoors whenever he can.

I'm not able to work at the moment (since December) and I'm really bored so I'll try to visit the board often.

Try and make the best of every day.

John
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Post  alli on Thu Mar 04, 2010 12:55 pm

Welcome to the forum. We are always happy to see new people although I am so sorry that you had to find us. Chronic migraines are a bummer. I hope Topamax works. The side effects usually clear up after a couple of months. Drop by and chat whenever you feel like it. We have a miscellaneous forum where we post non-migraine related stuff. Lots of fum people there and we try to keep the spirit going when the pain gets to be a bit much.

Alli
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Post  AuntieBubbs on Thu Mar 04, 2010 1:01 pm

Welcome to the board! Alli said it all so well Smile I'll just add my sincere greetings and salutations Very Happy

We do like to hear about various medications people are on, particularly what combinations are working for our friends across the pond. Smile We have a few of your countrymen and women here on the board who will have more to say on that topic, I'm sure.
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Post  Almostangela on Thu Mar 04, 2010 1:01 pm

Welcome John

Sounds like you fit in and glad to know a little about you. I've been on Topomax for a year and a half and doing okay. Not a cure but better than nothing for me.

Angela
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Post  pen on Thu Mar 04, 2010 1:07 pm

Hi John,

Welcome, I am in the UK too. Most of the people on here are in America/Canada, but makes no difference, we are all here to deal with the beast.

I wonder, are you a member of MAA over here. They are very supportive and their facebook page or web site are worth a look.
Don't be shy to share your experiences, we have all done it and had the odd rant. Many of us will have had the same expereinces.
It is good to be among people who understand.

I too have 3 grown kids, and some grandkids. It hurts that I cant be a proper grandma to them.
As for work....had to stop that in 1992. 'Tis boring isnt it....
Anyway John welcome....
cheers

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Post  LG on Thu Mar 04, 2010 1:15 pm

Hi John,

Welcome aboard! My husband and I share your passion for MCing, its nice to see a fellow rider on the forums. I am trying to learn on his HD sportster as he has been playing around on his hayabusa as of late. Smile I find that riding on the back during a migraine attack is one of the more soothing activities I can do. The cold wind on my face reallllly dulls the pain. Only on the 'busa though and you gotta go slow. The pipes are nice and quiet which is lovely but the faster you go the more you strain your neck with that full face helmet so you end up worse than you started off. We've experimented LOL.

I'm also starting my ventures on topamax. I have been on it for about 4 months now. I am taking 200mgs a day and still going up as needed. I am one of the people who are lucky to notice most of the side effects diminishing after 2/3 months. I do find it to be a big help, but not a cure as Angela said(well put!). I am thankful for my neurologist who works with me to keep my pain levels under control for my frequent migraines. They are really insane sometimes!

Hope we can offer some support and knowledge to you, I know that this forum has helped me manage my life in many many ways so maybe we can return the favor to you Smile
LG
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Post  Johnfd on Thu Mar 04, 2010 1:48 pm

Thanks for the warm welcome everyone.

Hopefully the Topiramate will do the trick and things will get more bearable.

I enjoy my job as a senior social worker but had to take an 8-month break once before about 5 years ago. I was told then that I would never go back to work but did so and, despite the daily headaches, and with the support/collusion of my manager, managed to keep going. Unfortunately she has retired now and the game is up. I've been told to stay off until I'm right as I can't keep going sick for a couple of days at a time. Well, we all know what the situation is likely to be there.

I've just taken out a free trial membership of the MAA, Pen. I was wondering about their enhanced membership. Is it worth it?

Lovegia, I've got a couple of old Moto Guzzis. Despite the noise they make, they don't trigger migraines but sadly they aren't cures either. If they were, perhaps I could get a new one out of our wonderful National Health Service! I discovered a couple of years ago that they would fix my arm after I went down a Welsh mountain side but they refused to look at the bike!

Interestingly, I've found that sunlight flickering through trees at the side of the road when I drive can bring on a migraine. However this doesn't happen when I'm on the 'bike. I can only think it's to do with the wrap around effect of the helmet. I might have to get some little sides put on my glasses for in the car.

Thanks again for the welcome. I'm sure I will be sharing my experiences with you and am so pleased to have found this resource.

I'm going to try to watch some tv now as I haven't done anything for the last couple of days. Guess why? I'm just starting the "head-full-of-water" and "wading-through-treacle" stage. I'll look in again later.

John.
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Post  LizzieB on Thu Mar 04, 2010 2:09 pm

John, welcome and so sorry you've had the need to find the forum but glad you did Smile

Good luck with the Topiramate. Hopefully persevering this time will bring benefits. It seems to be helping a lot of people. It's about the only thing I haven't tried for various reasons . . yet.

I've belonged to MA for a number of years. I've got enhanced membership as it enables you to join the forums and also get advice from the experts, who are actually very good. However, they changed their website a year or so ago and since then, the forum hasn't been very active. Which is why I found this lovely forum.

I'm a similar age and have had migraines since a teenager. In the last few years, they've evolved into daily migraines and I'm not coping too well at the moment. I've just started another anti-convulsive preventative but the migraines seem even worse at the moment. I too love the outdoors, we have loads of lovely walks around here but don't feel much like getting out at the moment. But things have got to get better some time, haven't they Smile

Liz
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Post  HeelerLady on Thu Mar 04, 2010 2:28 pm

Hi John,

Just adding my welcome. I hope you are able to find something to help you - I'm coming up on 9 months of daily M and I can't imagine what years is like. I had sporadic bouts before this but not for more than a day (wishful thinking now). But am in "guinea pig" trials and past topamax (lasted a whole 10 days and boy was it interesting). Just hoping for a day of relief at this point or at least to make the symptoms mild enough to ignore (ha ha ha).

But glad you are joining our group. It has been so helpful for me to just be with others that get it and may have ideas on things that never occurred to me. Well, I'm still at work and trying to dig out...you work from home a few days and things pile up. At least I was still able to work. Smile

Becky

P.S. - is treacle molasses? I'm in the US and that term is completely foreign to me. scratch
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Post  pen on Thu Mar 04, 2010 3:21 pm

Hi John,

Yes i do think its worth the enhanced membership.
See how you go with the trial.
This forum is a great place, but there are a lot of differences in medications given
and the names of them, also of course we dont rely on insurance, we have the good ole NHS.
So MA helps from and English point of view.
It is true the forum is less active on there, but it is easier to use than the old one.
Not that you would know there was one.. Very Happy
I have found them very supportive and have called them many times.
They have a panel of doctors who are supportive as well.
If we could just get the forum shifting a bit....
Hope to see you there..

P

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Post  pen on Thu Mar 04, 2010 3:24 pm


Becky

P.S. - is treacle molasses? I'm in the US and that term is completely foreign to me. scratch
It is pretty close Becky, but we can get molasses too.

Treacle or black treacle and molasses as it is know in the USA are essentially the same thing. It is the syrup obtained at a stage of extraction from raw sugar cane. The dark syrup left at the end of the extraction process, after all the sugar has been taken out is called molasses in Britain and Black strap in the US.
Golden Syrup, a product little known in America is a light golden mixture patented by sugar refiners Tate and Lyle. It is a highly concentrated solution of sucrose, invert sugar ( a mix of fructose and glucose) and some added non sugars which give it is distinct flavour.
Treacle is a dark sweet syrup made during the process of refining sugar. All these products are used extensively in baking and confectionery, cakes puddings etc. Molasses, Black Strap and Treacle add colour as well as flavour to anything to which they might be added.

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Post  sherri b on Thu Mar 04, 2010 4:55 pm

Welcome,

There is a wealth of information on here. Hope you find some good stuff on here
Sherri B!
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Post  tecky on Thu Mar 04, 2010 7:20 pm

Welcome!!

The support and friendship on this forum are priceless. It's so nice to interact with people who understand exactly what you're dealing with in suffering with chronic migraine and all the symptoms.

Take care,

Becky flower
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Post  Cindy*W on Thu Mar 04, 2010 8:57 pm

John,

I just wanted to say Hello and welcome.

Sorry we meet under these circumstances, but let me tell you that the people here are the best and most knowledgable people you will ever meet.

Hope to see you here often.

Cindy
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Post  Ivy on Fri Mar 05, 2010 1:08 am

Welcome John!
Don't be afraid to bother with symptoms and cures you have tried. Any newby brings something new and lessons to learn. It's never boring to read other sufferers's stories.

Have a nice day
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Post  Johnfd on Fri Mar 05, 2010 5:37 am

Thanks again for the welcome everyone. Somehow I lost my post from last night.

Substitute wading-through-mud for wading-through-treacle.

Pen and Liz, I've had an email from Stella at MA with a screen shot of the forum page which doesn't look very active but I think I'll join anyway. It's not as though it's a huge cost.

Sorry to hear you're having daily migraines too Liz. I tried Epilim (sodium valporate?) some 5 years ago which made me feel very dizzy which itself gave me migraines. That side effect also made it difficult for me to go out which meant it would have had to give a massive improvement to be worthwhile.

Although I've been around long enough not to expect a cure, I'm hoping for a noticeable improvement. So far nothing has had any impact as a preventative. For over 4 years I have taken 150mg of amitryptiline and all that did was make me put on 2 stone, slow me down and make me hot and sweaty. Reaching the top dose coincided with a good 3 week period although after that things went back to how they were. My doctor persuaded me that there had been an improvement and I stuck with it. I have to be fair and say that there have been odd spells of a month or two where I have had a bit of respite. In December after work told me to go and get sorted out I insisted in coming of the stuff and, well I never, the migraines stayed absolutely the same. At least now I feel a bit more alive.

I suppose what I'm saying is that there may not be a cure and I may have a full blown migraine lasting 2 days or so at least once a week with other migraine headaches around those but it's no good if the meds make the rest of your life rotten. Currently, apart from the pins and needles, I’m having some problems with motivating myself to do anything.

It occurs to me that my description of migraine and migraine type headache might not be the same as yours. So here I go, doing what I said I wouldn’t.

I get some advanced warning of a migraine that comes on during the day. However these are now very rare for me. My family notice that I become very irritable and I have uncontrollable yawning fits. Then the aura phase comes. Generally this involves seeing little things moving in my field of vision. There become more and more of these until I can’t see anything accept out of the corner of my eye. Not a good time to be walking the cliff path. There is also a taste in my mouth a bit like when you’ve just been to the dentist.

Migraines for me are a left-sided headache which begins behind the eye. This is an intense pain which runs from behind the left eye around to somewhere in front of the left ear. It expands to cover the left side of the head and more but remains concentrated here. There is a crushing feeling but throbbing at the same time. The throbbing is accompanied by a thump throughout my head which is not too painful but is like a shockwave. The headache is accompanied by nausea, sometimes vomiting, shivering, numb left side of my face or pain in the face, closed left eye, runny nose, dribbling, sometimes (rarely) I am unable to speak properly, usually blurred vision, weak left arm, and (rarely) unable to stand.

It’s after this I have the “wading-through-treacle” day where I can function but everything is really hard work. It’s like spending the whole day with ankle weights on while really worn out. Something else really strange happens. I get this spaced out feeling. For instance, I can go to pick something up and it seems to take forever. I see my arm go out and my fingers close round the object. But you ask anyone else and it’s been normal speed for them.

If I get one of these while I’m out and about – no problem. Elitriptan (Relpax) and metochlopramide to stop me being sick will do the trick in short order.

These days I still get these migraines but I wake up with them. I don’t get the warning signs or aura. They’re just there in the morning or they wake me up at 3am or whatever. The wife says I just shouldn’t go to sleep, ever. Elitriptan doesn’t touch these and they last the full 2 or 3 days and are followed by the day of wading through treacle etc and feeling washed out. Occasionally I’ve been unlucky and it’s just gone on and on.

When I talk about migraine type headaches I mean exactly the same thing but without the accompaniment of face pain, dodgy arm, blurred vision and all the rest. I’ve been told that these are probably still migraines. With these I can get up and about and would go into work although concentration was difficult. I know they’re not tension headaches which we’ve probably all had at some time as what I have are not aches but pains in the left side of the head.

Oh, that's all very heavy in an introduction thread. The sun's shining so I'm going out for a walk this afternoon.

John
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Post  alli on Fri Mar 05, 2010 10:50 am

Your symptoms sound like some of mine. I sometimes get a metallic taste in my mouth that taste like I've been chewing on aluminum foil. I don't get many visual auras anymore but I do get the irritibility, yawning and I also get neck pain prior to an attack.

The really bad ones go from my left eye through the top of my head, it's a dull/sharp pain that is just unending. I lose some motor function on my left side so I drag my leg, stagger and bang into things. The left side of my face goes numb and I slur my words, forget how to speak, and get very disoreinted at times. Then I get what I call the migraine hangover, a day or two of feeling achy, weak and like I have a hangover.

I get little warning on many attacks and most times either wake up with one or it builds slowly through the day until I have a pounding headache with all the other lovely accoutrements.

I'm on a cocktail of meds that have reduced the frequency and duration of attacks but I also have a couple of other pain related issues that trigger migraines and are not as well handled as I would like. Which means more meds.

It definitely a journey trying to find what works best.

Alli
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Post  Johnfd on Fri Mar 05, 2010 1:15 pm

Alli, I'm glad I'm not the only one to be like this but then again I don't wish it on anyone else either. It's a shame we have to go through so much trying to find an answer all the time knowing there might not be one.

John
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Post  LG on Fri Mar 05, 2010 1:23 pm

Johnfd wrote:It's a shame we have to go through so much trying to find an answer all the time knowing there might not be one.

Perfectly said John. Never thought of it this way but it explains a lot of frustration in a very simple way.
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Post  theresae on Sat Mar 06, 2010 1:43 pm

Hi there and welcome, there is alot of support and info on here, so stick with us. x
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Post  Stillhurtin on Sat Mar 06, 2010 4:17 pm

Hey John.
Welcome.
Sorry it took me so long to say hi, I'm usually better but have had a crazy busy couple of weeks. I found your intro to be profound in that you pointed out "there's more to me than my pain" that's a point that is unfortunately not usually part of the introduction. We do learn that about one another over time, it's just that people usually happen upon this site for the first time in a desperate or down time and their intro is quiet dark. Not judging anyone... Trust me, mine was one of them!!! Smile I just wanted to give props to the well rounded intro!

I work in Special Education, as an administrator at a private therapeutic day school for kids with emotional/behavior/learning difficulties ( as well as some other developmental struggles).
I have been on the Social Service field for 13 yrs and have many friends and cohorts who are Counselors/SW/Therapists.

It is definitly a tuff tuff career to juggle with pain, yet also a tuff one to let go of, as it stems from such an inner passion. I just last week almost threw in the towel. Bur I had an amazing breakthrough with a student/family and then a strangely rewarding experience with the owners of my program... And although I am not a strongly faith-based person, I felt that there was a sign that I was not meant to be giving up right now.

My saving grace is the school schedule. Come June I have 5 weeks off then 6 weeks of working only 3 days a week- all at reg pay. So that balances out how much I struggle to maintain attendance and health the rest of the year!!

I am also married with 2 kids... Boys... 3 and almost 6!

Well, once again, welcome, glad to have ya!
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Post  Ruth on Sun Mar 07, 2010 3:54 pm

Hi John,

I'm curious to know where abouts in Wales you are, you don't have to give me the exact location, it's just
that I have a brother in Wales (Brynhoffnant), he moved there from London a couple of years ago, loves it there!
He used to look out onto a six lane highway, now he looks out onto fields with sheep or cows!
We visited him and his family last spring, it's so pretty there and right by the sea. He used to suffer from terrible
migraines but doesn't seem to get them now, just mild headaches.

Welcome to the forum Smile

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Post  Johnfd on Mon Mar 08, 2010 7:41 am

Ruth wrote:Hi John,

I'm curious to know where abouts in Wales you are, you don't have to give me the exact location, it's just
that I have a brother in Wales (Brynhoffnant)Smile

How about that 7 miles! Near New Quay.

John
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Post  Ruth on Wed Mar 10, 2010 7:42 pm

Oh wow, you're really close! We were in New Quay last spring when we visited, had lunch there at a nice restaurant overlooking the sea. If you're ever in Brynhoffnant, I know he'd love to meet you, he's a very friendly person (taking Welsh lessons right now!). If you do want to visit some time, e mail me and I'll give you his address. As I mentioned before, he used to have awful migraines. Do you ever go to the beach at Llangrannog? I love it there, and really enjoyed walking along the cliffs, such a pretty place.

Hope you're not suffering with too many migraines, I have sore eyes (dry eye syndrome) and can't spend too long on the computer checking out all the
posts.

Take care.

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Post  Olee on Sat Mar 13, 2010 7:46 am

Welcome to the group John. I was very interested in reading your take of being a rider and migraine sufferer, since I am planning to buy a motorcycle in the near future myself. Gives me some hope. Again welcome to the group.
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