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Scared Stiff

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#1 Sun, 29/03/2015 - 11:56
MissKittyB
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Scared Stiff

Hi everyone.
I am new to the forum having just had a diagnosis of CH. This has come as a shock and a relief as over the last 10 years I have been diagnosed with migraine, transformed migraine ,Trigemnial Neuralgia and Chronic Migraine and tried every medication under the sun. Its only now that I realise how clearly my symptoms match CH. I have a great GP who has put me on Verapamil, is trying to get oxygen and getting me re-referred back to Neurology.
 
The reason that I am scared stiff is that I am facing 'absence management' at work. I have had months and months off in the last 2 years and patience is wearing thin. This time last year I had almost 5 months off – neurology had diagnosed 'Chronic Migraine' at the time and I was put on all the super strong migraine drugs- none of which really helped and to be honest left me unable to function or find my backside using both hands! A GP report was commissioned, I contacted Fit for Work who did a reasonable adjustments assessment, my employers dismissed 90% of the adjustments as unreasonable and I finally came out of what I now know to be a bout, and had no option but to return to work. One of the adjustments (a mid-week break) was withdrawn a few weeks ago due to a change in the office opening hours. I was given the option of keeping the hours with a substantial drop in pay, or having to work extra time at weekends which was not acceptable.
 
I have been struggling to keep things together since last July and have had short periods off. However last month I was completely poleaxed and had 2 weeks off and at this point my GP said it was likely to be CH rather than migraine and that a completely different treatment plan is required.
 
I'm back at work, struggling through a fog of medication and shadows and now have to face absence management this week.
I dont know where to turn. There is no union presence and as I'm full time worker I cant get to CAB. I admit my record is poor but I dont know what I can say or do to turn it around. My only thought is that as I have now been diagnosed with a different condition, they should be getting a further GP report before I get the chop. And should I say that I need more time to allow for the new meds to take effect.
Basically I suppose what it comes down to is, what options do I have if  reasonable adjustments havent brought about the miraculous improvement that  my employers were expecting? I suspect the answer is 'very few'.
 
 

MissKittyB.

Sun, 29/03/2015 - 12:54
Harrietjt
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Joined: 22/10/2014 - 12:47

Can I ask what percentage of days of the year you are affected by CH? If you suffer on more than 50% of the days it is worth applying for PIP.

Harriet

Sun, 29/03/2015 - 15:17
ElizabethK
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Joined: 26/02/2014 - 14:26

So sorry to hear about what you are going through. Please contact Neurosupport tomorrow morning on tel:0151 298 2999. Neurosupport have been set up to support anyone with a neurological condition with work and benefits problems. You also may find it helpful to give our Helpline a call too 01646 651979 Please let us know how you get on?

take care

Liz

Sun, 29/03/2015 - 21:48
darren h
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Joined: 20/03/2015 - 11:43

hi kitty, sorry to hear your story similar to mine except your boss, now youve found ouch your life will get much better i promice, it wont be easy just better you see, your on the rite meds now i hope, so be strong your helth and happyness isnt worth that job im sure, stress has triggerd more than a few of my attacks you could be the same, have a heart to heart with a frend that knows you and talk about it or reach out to us cluster heads weve bin there and willing to listern, the ouch team will give you the best advise, so chin up your not on your own, dh :)

Mon, 30/03/2015 - 09:51 (Reply to #4)
ElmaA
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Joined: 26/02/2014 - 14:55

Hello kitty,

i echo all DARRENs kind and warm words to you

sorry you are going through a bad time,, not easy but pray it will all work out well for you,

you will get good advice from all at ouch.x

ELMA .

Mon, 30/03/2015 - 14:43
JasonClark83
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Joined: 28/10/2014 - 13:02

Hi kitty,

Can you email me at rights@ouchuk.org

I am the HR and employment specialist for ouch

Mon, 30/03/2015 - 21:28
gerrybackontrack
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Joined: 16/12/2014 - 20:25

Hi Katti, give me a call on 07947249533 see if I can help

 

Gerry back on track

Tue, 31/03/2015 - 08:00 (Reply to #7)
MissKittyB
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Joined: 29/03/2015 - 10:59

Hello,

To be honest right now I have some level of 'headache' on every single day. Are these the shadows?  I had three weeks of absolute agony, which has now subsided and left me with ice picks most of the day every day. 

 

MissKittyB.

Tue, 31/03/2015 - 08:09
MissKittyB
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Thank you everyone. I've never used a forum before so aploogies if I post things in the wrong place, or three times!

I'm a bit foggy today with a 2am squirt og Zolmitriptan, Thankfully it got there in time but I'm exhausted. Just icepicks now.

Got to go to work now..I dont know how I manage.

MissKittyB.

Thu, 02/04/2015 - 13:39
☽Ţ ҉ĥϋηϠ₡яღ☯ॐ€ðяئॐ
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Joined: 26/03/2015 - 14:36

it's ok we're all new once , and lots of us know what it's like to have to muscle through them

i just hope the journey to the diagnosis didnt cost any teeth and unnecessary root canals..

wishing you some respite, relief and portable hi flow oxygen and a successful result from Neurosupport

 

 

Thu, 02/04/2015 - 17:00 (Reply to #10)
MissKittyB
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Thank you so much.

Oh yes, I'm afraid teeth have already been sacrificed to The Beast. |(

On the bright side, it saves a little on toothpaste bills.

 

MissKittyB.

Thu, 02/04/2015 - 21:03
☽Ţ ҉ĥϋηϠ₡яღ☯ॐ€ðяئॐ
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aye that lol  and a few others are now easier to reach for a more thorough shining :]

aint that the toof ..

hehe , its good to see you also got the humour as one of the "getting thru tools"

I learned that as priceless from all ex army friends bless em

*sends hugs*

did you manage to initiate a call back from nuerosup ok?

 

 

 

Fri, 03/04/2015 - 08:45 (Reply to #12)
MissKittyB
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Hehehe. Gallows humour eh? All the dancing and pacing over the last 4 weeks, coupled with loss of appetite allso means that pounds have been shed and I will be a size zero by May day.:bigsmile:

Yes I have been in touch with both Gerry and Jason and received some helpful advice. As a result my  work prospects- although far from ideal- do not look quite as bleak as they did earlier in the week, which is a relief.

I cant fathom your username. Are you the "Artist Formerly Known as..."? It does look like "Thundermouse " to me. I hope it is, as thats reeeaaallly cool!   8)

 

MissKittyB.

Fri, 03/04/2015 - 18:17
☽Ţ ҉ĥϋηϠ₡яღ☯ॐ€ðяئॐ
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Joined: 26/03/2015 - 14:36

good stuffs , i dont know what it is but maybe it's because of full moon?

things just got a little better in my neck of the woods also today and i managed to get my left leg back from paralasys finally .. (get hemiplegics too - mainly from avoidance of sleep into decadence from fear of being smashed awaken by the beast)

hehe it can be thundermouse if you like Smile

and i wish i could play purple rain on the guitar aye!

thunderhorse though is what it really is... and nice to digitally meet you Smile

the thunderous headaches are definitely larger than mice though ,

larger than horses come to think of it, mind.

I hope the last few days were more on the up for everyone else too.

Sat, 04/04/2015 - 09:24 (Reply to #14)
MissKittyB
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Thunder horse..? AH! I see it now :bigsmile:  

The CH is clearly affecting my mental and visual capacity hahaha!

V pleased to make your virtual accquaintance too.

MissKittyB.

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