where did my life go?

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where did my life go?

Post by onandoffagain on Thu Mar 22, 2012 1:20 am

Really feeling rubbish today. I was diagnosed with HM several years ago and had several big but well spaced attacks over the years but recently they have increased in severety and frequency. Neurologist has tried various treatments and changed my diagnosis, latest being migraine with prolonged Aura, most last for at least 73 hours if not 5 - 6 days, the physical aura lasts for 4 - 6 weeks (im currently on week 6) Ive been off work for 6 weeks, not driving, cant cook, walking with a crutch, tremors in hands, constant visual aura all day everyday. Next neurology appointment April 26th. Every light source splits into glitter. surely that can't be migraine? I mean you can't have a migraine 24 hours a day 7 days a week for 3 months? can you? I just don't understand why they are getting so much worse. I don't get nausea, i don't even always get a headache. I i am so worried about trying to explain the symptoms to my neurologist because its impossible to work out where one symptom finishes and one begins. I have kept a diary for months but its just a mess. I feel useless, my husband is having to work full time, look after the kids, do the house work etc, i'm used to being busy, running around, looking glamorous, now i just sit on the sofa looking and feeling like crap.

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Re: where did my life go?

Post by Tee on Thu Mar 22, 2012 8:10 am

Oh sweetie - I TOTALY understand where you are coming from and yes that can be migraine - I wonder if you have had a big HM?

I was aura 24/7 for 3 years!!!! Before I got the dignosis.... They kept telling me I had had a stroke and I would get better....

My official diagnosis is Chronic Hemplegic Migraine with persistent aura..... I wish I had the answer for you - but I will say take it slow, one day at a time.... and some days hour by hour - try not to feel guilty - your hubby is going to have to take over for a while you need to rest and heal.........

Did anything happen to trigger this???? What preventative are you on?

And have you tried any relaxation stuff - Indian Massage, meditatioin etc

BIG BIG BIG HUGS - I have been there and it is not funxxx


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Re: where did my life go?

Post by Tee on Thu Mar 22, 2012 8:13 am

Oh I will add - when you see the doc - as for Botox - there are still a few trails going on x

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Re: where did my life go?

Post by onandoffagain on Thu Mar 22, 2012 8:22 am

my triggers are seemingly totally to do with light at the moment. I wear polarised tinted glasses all the time, my eyes become over stimulated very easily by any amount of glare, moving images, pattern, anything interesting and colorful which sets the migraines off, which then produces visual aura, which re stimulates the visual brain bit and on and on and on, that my theory anyway. Im on amitryptylin 80mg and topiramate which i've just got up to 100mg....sorry just had a laughing fit. im trying to talk to my husband but i keep getting stuck on one word like a stuck record and we both fall over laughing. I'm glad we can find it amusing. xx

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Re: where did my life go?

Post by Tee on Thu Mar 22, 2012 7:54 pm

Very Happy Bless you - I love how we go through this and can still laugh Smile

Have you tried meditation hun - you might be able to switch the neurons from firing.....

This one is not too bad - do not have it on loud though -

https://www.youtube.com/watch?v=OoM57Z8dRUY&list=PL279C87D86B0EEA44&index=1&feature=plpp_video

This is a powerful one - but takes a while to do and may be to advanced if you are just starting...

https://www.youtube.com/watch?v=lP8YoYWL_rE&list=PL279C87D86B0EEA44&index=5&feature=plpp_video

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Re: where did my life go?

Post by Sarah on Fri Mar 23, 2012 2:35 am

No advice to give, but just to say that I can totally relate to the feeling of wondering where my life went, and the frustration that I can't be myself and the way I feel most comfortable and confident.

Really hoping things will improve for you soon. xxx
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Re: where did my life go?

Post by Kala on Fri Mar 23, 2012 7:10 am

I too suffer from chronic hemiplegic migraine. I live with high pain levels 24/7 and some level of hemiplegia from total paralysis down my left side to just a mild weakness but I know it's there! I can totally empathise too with regards to "where has my life gone". I've been off work with a severe exacerbation of my HM since the beginning of January and my employer visited me at home this afternoon to discuss my situation. It's highly likely I'll now lose my job. It doesn't seem to matter how hard we all try to live with this debilitating illness it still has the control.
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Re: where did my life go?

Post by h.tomlinson on Thu Apr 12, 2012 7:38 pm

God I was just thinking the same thing 'where did I go' I have suffered from chronic migraine for about 8 yrs now, constant pain 6/10 and above. I use to be an active person, working, gym - running etc, social life, now I just drag my self to work 3 mornings a week (can't work full time any more and this is the least I can do and still pay the mortgage) then spend the rest of the time recovering from work, sleeping, resting, takings pills.
I have given up on thinking I will ge better now but I just can't think this will be my life Crying or Very sad My neurologist has tried me on everything and seems to have given up on me...just keeps giving me botox and one different pill after another. Only hope now is the optical nerve operation thingy but funding can be difficult and I have no time scale for it.
Just so hard to get up every morning.....my husband is great but sometimes he disappears to the pub when I really need him - ie walk the dogs to stop them naging me so I can sleep. I know he can't begin to understand the pain and he needs his life but it somehow makes things harder.

Right complaining over...changes nothing but off my chest.

Some one inspire me, need a reason to keep going I love you
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Re: where did my life go?

Post by onandoffagain on Fri Apr 13, 2012 1:49 am

Sad thank you for your support guys, i'd like to tell you that things are better and give you some inspiration but Unfortunatly my world continues to crumble. I feel very sad today, i have just had to take my much loved but mad lurcher back to be rehomed as we can't cope with his issues on top of my kids issues and my health. My poor husband has enough to deal with. I'm dreading lonely days at home without him, he was a great companion but i Couldlnt walk him any more.

Tomorrow is friday 13 so lets see whether life looks brighter or continues to drag me down. sorry for sounding so despondent )

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Re: where did my life go?

Post by Tee on Fri Apr 13, 2012 8:23 am

It is soooooooo hard to be positive with this all the time - so you are bound to get down once in while............ wish I had a magic wand and could get rid of all this pain once and for all for everyone...

I have had a headache since Friday at a 6+ and aura keeps coming and going.... Botox is wearing off... Sad So today I wrote a list of all the things Chronic Migraine has given me... I was not going to share this, but after reading these posts, I would be interested what you could add to it for you....

I love you I get to see my beautiful family everyday

Smile I get to eat dinner with them every evening

clown It has given me the freedom to let go and not worry the small stuff - so there is paper all over the floor - but hey it was fun making the mess

sunny I have time to smile at the sun (under dark glasses) and smell the roses - I even smile at the rain

cheers I have met some amazing people who suffer and can still smile

jocolor Some of my best friends have come through chronic migraine and some whom I have never even met - yet they are the ones who pick me up when fall

study Instead of running around helping a big international company make money I get to run a forum and help in a much better way

Sleep I get to be a teenager again and sleep all day hee hee

pig I do not give damn what I weight anymore

pirat I do not have to wear a suit or shoes - bare feet is best

Hug

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Re: where did my life go?

Post by onandoffagain on Fri Apr 13, 2012 8:36 am

Awe Tee you have given me my goal. At the moment I am in a phase of counting the things that Migraine has taken from me, which includes my positive outlook. My goal will be to climb back up and get a list of positive things. I think it may take a while x

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Re: where did my life go?

Post by Tee on Fri Apr 13, 2012 8:39 am

Just start with one.............. x

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Re: where did my life go?

Post by pīwakawaka on Fri Apr 13, 2012 8:46 am

I'm with you Tee. I used to work 60+ hours per week and be on call 24/7. Looking back on it now I realise I wasn't working to live, I was living to work. Planning my personal life was next to impossible as call-outs took precedence.

Planning my personal life is still next to impossible as the migraines are so unpredictable, but in between attacks I have time to "smell the roses" - something I didn't have before.

So while I would prefer to be without them, I look a migraines as a "cloud with a silver lining".

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Re: where did my life go?

Post by Sarah on Fri Apr 13, 2012 8:54 am

What a great post, Tee. I definitely find it hard to concentrate on the positive and see the wood for the trees. I really need to work on that more.
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Re: where did my life go?

Post by onandoffagain on Fri Apr 13, 2012 9:03 am

Maybe we should start a joint list where everyone can add something positive too whenever they feel they can, would give a nice reminder to all of us that there as been and will be good days and good things (not that i know how to do that technically speaking......) Idea

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Re: where did my life go?

Post by Sarah on Fri Apr 13, 2012 9:03 am

That sounds useful. Smile
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Re: where did my life go?

Post by Tee on Fri Apr 13, 2012 9:30 am

Not sure its possible in here as you imagine it - but added to this thread for now and I will have a play with a guest book / comment type of thing for the website page - which I am trying to work on......

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Re: where did my life go?

Post by Tee on Fri Apr 13, 2012 9:32 am

Or would you like a fourm section for it - I can do that Smile

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Re: where did my life go?

Post by onandoffagain on Fri Apr 13, 2012 9:43 am

That would be good, shall we try and keep it as one liners so its easy to read and reflect on? Otherwise the power of the list might become diluted in longer posts? what do you think?

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Re: where did my life go?

Post by Tee on Fri Apr 13, 2012 10:13 am

Sounds like a plan - I will do it tomorrow - as guess what I have a headache hee hee - night all xx

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Re: where did my life go?

Post by Tee on Sat Apr 14, 2012 4:33 am

Sorted - there is now a section on the main page - 'Reasons to be cheerful'

I have started the list as promised - but left the section open so you can all also post about positive days/events too Smile

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Re: where did my life go?

Post by h.tomlinson on Sat Apr 14, 2012 7:28 pm

Your right while it is hard to look at the good rather tha the bad It is certainly something I have the time to too....ie. slept for 24 hrs and didn't feel guilty for wasting my life! Going straight to the reasons to be cheerful it Smile
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