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Hi Newbie here

Post by metallichick on Sat Oct 08, 2011 12:58 pm

Hi everyone my name is mandi i'm 44 with two grown up children and recently became a nanny. I wasn't a huge migraine suffer, just the odd one occassionally throughout my adult years until 23rd July 2010!!!

The day before it all began on 22nd my husband was doing a tattoo on my butt, unfortunately half way through i began to get shooting pains up the back of my head the pain was unbearable so he had to stop. The rest of the day continued as normal and i went to bed. The next morning i woke up with a terrible headache and pain in my ears and jaw, as the morning went on the headache turnt into a migraine Sad So off to bed i went & stayed there for the rest of the day!

I won't bored you with the long drawn out story but continue the rest in brief..... My migraine continued, still with ear and jaw pain.... Off the A&E i went, they said it was a dental problem, off to the dentist i went they said it wasn't a dental problem, visits to my GP back to A&E, pain killer after pain killer....this went on for weeks. I was eventually diagnosed with TMJ (Temperolmandibular joint disorder) months went past the problem got now better, my depression kicked in and was off work with so much pain including photophobia & phonophobia. I asked for a second opinion at another hospital as i wasn't convinced this was diagnosed correctly, neither did my GP nor my dentist... New hospital, new tests and refered to a neurologist....

Now to cut a very long story short it turns out i was misdiagnosed i infact have chronic migraine... This migraine has continued for 15 months solid without a single day break, i have lost my job on medical grounds and unable to get any benefits as ESA & DLA don't see that i have a problem, don't sleep (hense blogging at this hour of the morning) and have no quality of life!!!!

So there's me in a nut shell....
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metallichick

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Re: Hi Newbie here

Post by Tee on Sat Oct 08, 2011 10:58 pm

Good afternoon Mandi and welcome to the group Smile

I am so sorry you have been through a rough time..............mis diagnosis sadly is quite common grrrrr

Interesting story though not heard of a tattoo as a trigger - maybe a number of things there - allergic reaction, hit a nerve or just the stress- have you had one before?

There are a number of things which sprang to mind as I read your post .............. from what you have said it sounds like you have chronic classical migraine as you mention aura. These links may help. Knowing your type of migraine kind of help not only with treatment but just giving it a name seems to help people.

http://migrainetalk.forumotion.co.uk/t185-types-of-migraine
http://migrainetalk.forumotion.co.uk/t250-types-of-aura

I assume you are seeing a 'headache' neurologist?

http://migrainetalk.forumotion.co.uk/t95-neurological-departments-in-nhs-hospitals
http://migrainetalk.forumotion.co.uk/t96-migraine-clinics-in-the-uk

If not then that is the first thing to get sorted. The lists above give details on the hospitals and clinics in the UK.

This type of migraine is beyond a GP or normal neurologist.

As you are at chronic stage, you need to be on a preventative medication / treatment - of which there are many...... have you tried anything yet?

http://migrainetalk.forumotion.co.uk/f3-medication-and-treatments

And finally you ARE entitled to incapacity benefit and if you need personal care and help, to DLA as well. Migraine is listed.

http://migrainetalk.forumotion.co.uk/f16-benefits-legal-insurance

Are you still getting the jaw pain? That is a known trigger.

Sleep is a common problem too - and if you can crack that you will feel better - easier said than done - I used Amitriptyline in the early days to help with sleep. I lost the ability to stay asleep for years:( But this drug helped me learn again Smile

Sorry if you already know any of this - but if you have any questions please do shout...... we have loads of info to help across the forum, but please just add other threads if you cannot find anything- please do ask the silly questions - we are all in the same boat.

Whilst there is no cure for migraine, you can get better management - in time.....

Tee x

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I love you “Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship.” Buddha[/color][/i]
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Re: Hi Newbie here

Post by metallichick on Sun Oct 09, 2011 11:30 am

Hi Tee

Thank you for your welcome & reply Smile

Just to answer a couple of your questions, firstly the tattoo... Yes i do have other tattoos but this was the first one my husband had done on me. He feels so guilty about my migraine as it began the following day but as you say and i have told him on a number of occasions it could just have been a coincidence, it maybe a reaction to the inks...although my consultant does seem to think that it maybe due to hitting a nerve Shocked

I am now seeing a specialist migraine consultant at the Luton & Dunstable Hospital, Bedfordshire. I have been on so many different medications, Co-Codamol, Amitripyline, Diazepam, Pregabalin, Elipmin Chrono and Carbamazipine all at maximum dose and not one has helped in the slightest Sad I'm now on Pizotifen and waiting for an appointment for a Nerve blocker injection into my head. That will be done at the Royal Free Hospital in London, i must say I'm not looking forward to it but I'll try anything to stop this pain?! Has anyone on here had this, did it help?

I explained to my consultant that since he took me off the Amitripyline & Diazepam i hardly sleep at all but unfortunately he isn't happy giving me anything 'addictive' to help. Apparently he is also limited to what medications he can give me due to me being on medication for depression and Oesophagitis. I'm not even allowed to take any kind of analgesia!!!

I have also kept food diaries to see if anything makes it worst but there doesn't seem to be a pattern as it is continuous and never goes away. I would be interested to know how many other people on this site have a continuous migraine? Is this common for it to NEVER go away?

I don't get the jaw pain anymore that seemed to have stopped on its own sometime ago but I still get a lot of pain in my ear, sometimes the ear pain is just as bad as the migraine....

I understand incapacity benefit is no longer? It is now ESA & from what i hear people on IB will eventually move over? I applied for ESA when i lost my job at the NHS and had to attend one of those dreaded medicals but when the report come through it was a load of nonsense half the things i told him was not recorded, I'm now going through an appeal and waiting for a date to attend a tribunal.... Yet more stress! The same with DLA that also got refused, although after speaking to the CAB they were very surprised i had been turned down so I'm also waiting an tribunal date for that too?

As i mentioned above i have no quailty of life and feel that i'm just existing! I hate that i'm stuck in doors everyday when the family are out at work, i have it that i don't work as i worked all my adult life and i hate the fact that i have paid my NI & taxes for all these years and have to fight for a bit of financial help and there is no guarantee that'll win my fight Embarassed

Well enough of the 'I hate......' on the positive side i had a wonderful family that are extremely supportive, although as i said i'm stuck in doors all the time. During the day my husband, children and mum are always ringing me to check i'm ok and my daughter pops home at lunch time to make sure i have something to eat and my poor hubby cooks dinner when he get in. I'm a very lucky lady to have such a wonderful [/color]family..... Hug
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metallichick

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Re: Hi Newbie here

Post by Tee on Sun Oct 09, 2011 9:04 pm

Morning hun

You are not alone -there are a number of us on here who have migraine everyday - I had my BIG HM 5 yrs ago now and in all that time I have had just 3 days with no pain or no aura Sad However, I am a lot better than I was 5 yrs ago. Most of us keep a migraine diary and record the pain levels everyday, so I know I have gone down and like you have been on a lot of the meds.

I am sorry they have taken you off the Amtriptalin - sleep is so important - I would ask about that one again. There is a great thread somewhere on here about tips on getting better sleep - I will try and find it for you.

Re triggers - have a look at this list:

http://migrainetalk.forumotion.co.uk/t330-types-of-triggers

There are loads of things, not just food that contribute. Personally my triggers are over stimuli, so too much noise, light, people, smells, even thinking can do it Sad

A GONB is not as bad as it sounds and some people get some great results from them. I have had 2. The first was great, sadly the second did not do much. Its a simple injection (s) max of 2 in the neck behind the ear and if I am honest the worst bit is when they press to find the right spot.

If this does not work there is also DHE and Botox. Which again people can get good results on - I am currently doing a Botox trail and it is helping.

And yes you are quite right Incapacity is being rolled out - I was not sure of the dates - but a lot have been moved over already. It does seem to be a norm for them to refuse the first time round and sad that we have to fight it - CAB are great and I wish you all the luck in the appeal.

You sound like you have a wonderful family and that my dear is perfect -I could not cope without mine Smile

I am trying to think how I got where I am today (had a 10 yesterday so a little foggy lol) But it was not just one thing:

I realised that I had to change - and I do not sweat the small stuff any more - so there are dishes in the sink - they will be there tomorrow lol I do try to do things, but as soon as I get tired or start to go numb I stop. One great doc told me that pushing it was doing what you did today for one min - you do tomorrow for 2.

Other things where working out the triggers - that takes time - but I no longer go to places that trigger it all off - food is delivered etc

I have also removed all chemicals from house - I have a real problem with an made chemicals and I used to avoid them ie hubby would clean the bathroom, but that was not enough and now the removal from the house is a lot better.

Also I have added in a lot of supplements - there are loads of threads on those and the magnesium defo helped.

I also changed my pillow -a small thing - but I was getting a lot of neck pain and this has helped - I now use a Mediflow water one.

Keeping to regular routine re food and sleep also helps - as boring as it is lol - but sipping meals can trigger it as can lack of sleep.

I wish there was a simple answer to this............... but everyone is different, the trick is to take baby steps and sort one thing out at the time and whilst not giving up the fight - but giving in to it a bit and resting when you need to. It does take time (too much damn time) but you can get better management.

I hope the GONB helps you... do let us know how you get on.

Hug





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