Chronic Migraine.

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Chronic Migraine.

Post by Katie on Fri Jun 10, 2011 5:17 pm

Chronic migraine is migraine headache for 15 or more days per month that is not caused by medication overuse. It can be a bit of a b to treat and does have the potential to become the headache that ate my life. Scream

Thought it might be useful to have a thread for those trying to keep the drug, work and REST balance going to have a life.
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Re: Chronic Migraine.

Post by Sheena Hulston on Fri Jun 10, 2011 9:37 pm

I love it
its the headache that ate my life and most of my brain girl!!!!
I would be happy with ONLY 15 days a month!!!! : Bad day

Sheena x
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Re: Chronic Migraine.

Post by Sheena Hulston on Fri Jun 10, 2011 9:46 pm

On a more sober note I have just doubled up on a spag bog and chilli
sauce, bought a load of mince made a big batch too freeze so on the bad days I can chill knowing the sprogs can be fed.
I part cook jacket potatoes as well as I can fill them with cheese and beans. They freeze great drop them in micro then.
It all adds to relaxed times if I cant do it!!
I do ironing as it happens and put a wash on every night then at some point someone can hang it up in the day for me.
Well regimented our lives are now.
I wish I could work though! Sad
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Re: Chronic Migraine.

Post by Sarah on Fri Jun 10, 2011 10:34 pm

*Raises hand*

I often wonder how you mums cope, as just looking after myself and a few pets is hard enough. In the days when I was working, cleaning etc just didn't get done - I'd get home from work, slump, then slump all weekend.

The biggest thing I find is that on a rare good day the last thing I want to be doing is cleaning and the boring stuff that has built up while I've been too ill to do it!

Oh and the fact that I can never pre-arrange anything, as I never know what I'll be like on the day.
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Re: Chronic Migraine.

Post by Tee on Fri Jun 10, 2011 10:59 pm

I am in fact daily if you count the aura - my headache comes and goes but the aura has not gone for one whole day in 5 years Sad I have not been capable of work for the 5 years. If I over do I - I get worse....

But, I think the big thing for me was that once I had given in to the fact that I had gone chronic things got a little better. (I say that with ease but it took me almost 3 years to get to that point)

But I no longer stress about the little things and some may say not even the big things! lol

I used to be the most organised stressed person in the world - in fact I did it as a job - I was a project manager for a massive firm of accountants and handled big buck projects with big teams - we now plod along at a nice slow pace and things get done when they 'need' to be done. If I need a nap and the dishes are not done - they wait!

I have four kids all under 10 and we do plan, but on the understanding that if I am not good, it will happen another day (of course if its very important then the Triptans come out in force) but they have lived with this for 5 years - so its the norm now...... My 'penny drop moment' was when one very good doctor said to me....'Tracey, its better to have a ill mum than no mum at all"

So I no longer feel guilty, I no longer apologise, this is how it is and if the other people cannot get their heads round it - Tough!!

I must admit I do not do this alone - I have an amazing husband and without him I would not be where I am today Smile

We wash everyday and now use a tumble dryer all the time. The ironing piles up and bits get done as and when (if I am honest thats when the kids run out of clothes lol) The freezer has ready made meals in for the days when we just need to eat! I have a cleaner who comes once a week, who tackles the worse of the stuff. And I try to clean only one room a day and if I am too bad - that waits until the next day. I do not panic about the odd mark on walls any more. The garden - well the grass is neat and I am good at growing weeds Smile
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Re: Chronic Migraine.

Post by Sarah on Fri Jun 10, 2011 11:08 pm

I've changed a lot too, and can relate a lot to what you say, Tee. I was very successful in my job, and pushed myself through my migraines for years. I was absolutely determined not to give in to them, and that if I gave up work, that's what I'd be doing.

I eventually decided that this attitude wasn't doing me any favours, and I was in fact punishing my body. Whilst I would love to be able to work again, and very much miss parts of it, I don't regret my decision at all and never have.
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Re: Chronic Migraine.

Post by Tee on Fri Jun 10, 2011 11:22 pm

Good for you Sarah - it takes a brave person to admit to that and to let it go.

I would love to go back to work and one day I may - but right now I need to get better and have some kind of life with the kids. so things have to be calm and stress free. Not that it is all the time with 4 kids in house lol - but i try
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so glad I have found this site

Post by h.tomlinson on Sat Jun 11, 2011 2:27 am

so good to read about other people with chronic migraine (not that I wish it on anyone) I too wish is was only 15 days a mth! I am every minute every day going on 7 yrs now. I have been on every drug known to man with all the side effects. I am currently on botox and there is hope....it has brought me down from an average of 8 to a 3.5/4. Unfortunately is does not last too long with me - should last 3-4 mths I get about 10 weeks on 165ml before it starts to wear off. I don't get my next dose until early july so am starting to feel rubbish again. I must say the swinging from low pain to high pain is probably more depressing than constaint pain as you just get use to having some form of life back and it is snatched away again. I have been reading about the migraine clinic in london that does research...anyone tried it?
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Re: Chronic Migraine.

Post by Sheena Hulston on Sat Jun 11, 2011 2:52 am

Hello h tomlinson do introduce yourself on members stories. Its where most of us kick this off.
Tee who founded the site has just started on botox and I know will love to have a chat to you

HI from us all x
Sheena

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Re: Chronic Migraine.

Post by Tee on Sat Jun 11, 2011 3:13 am

Hello there H.Tomlinson and welcome:)

Sorry you have had this for so long Sad

Pleased to read that the Botox has reduced the severity. Smile Where do you have it done? And how much do you have? As Sheena says, I had my first set of 31 injections a few weeks ago, I am not sure I can say yet if its working (I bent my head back a few days ago and kicked off a big HM - duh - So I am still getting over that)

I do think some of the crew have used the London Pain Clinic and will be able to answer that question for you. I do know they have a good reputation with hormonal migraine. Which hospital are you with now?

Tee
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botox

Post by h.tomlinson on Sat Jun 11, 2011 9:54 pm

I have my botox at hope in salford. My last lot of injections was 165 units approx 40 inections ( don't count - ouch!) head,neck and shoulders. This was the first time I has it in my neck and shoulders and I too made the mistake of bending my head back for too long (gardening...got so excitied I could do it I over did it!) and spent 2 days paying for it. Although I feel my neck is tighter I try to have regular massages and the girl that does them says I amy much better - no more rods in my neck. My problem with the botox is is doesn't last as long as it should. so I am afraid he will stop it as it is expensive, plus I have 2 mths of much better days (but still not great) and then it all goes wrong again and I am miserable.

I am at the stage sarah was while working....I push myself to go every day but I know it is making me worse...just can't afford to give up. Very glad I don't have kids! don't know how you would do that.
x
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Re: Chronic Migraine.

Post by Tee on Sun Jun 12, 2011 12:44 am

I am so sorry the Botox is not working the correct length for you - can they give you it more often - since is is working?

There is a thread for benefits on here - http://migrainetalk.forumotion.co.uk/f16-benefits-legal-insurance
it might be worth asking what everyone gets, as it might mean you could go part time and cut the stress down a little. I was lucky enough too have income protection insurance which covered half my salary, but I also get incapacity benefit - I have not gone for DLA but I do know a few that have.

My big wish is to go back to work, but I cannot even imagine doing the train journey, Shocked let alone the hours sat at a desk thinking.
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Re: Chronic Migraine.

Post by Katie on Fri Jun 17, 2011 11:34 pm

Right as I seem to be heading into bloody awful run of migraine just before the ECH starts up again.

These are some of the things I have found helpful to try and keep life and soul together with a family of four kids and furry pets.

Buy in bulk where possible.
Stock all your spare space with dry/long life ready for the bad head from hell seige.
Get a large chest freezer if your home has space and use the better days to cook and freeze in large batches. If you have lots of bad days smile and bulk buy in ready food that even a young teenager can cope with reheating. It does not have to be unhealthy- think about pasta with sauces, frozen fish pieces, froze veg. I buy family size containers from poundland and make lasagnas, cottage pies and mousakkas which freeze well and even my youngest can shove one in the oven for tea.

If you have little kids use a better moment or ask your partner to make a packed lunch for them to have out the fridge at lunch time.
Have a container with ready peeled and sliced raw veg or fruit for them to nom on. Keep a tin with special 'you have been good and helpful thank you' treats in like wrapped sweet biscuits, fruit juice or similar bribe.

Keep a special box with moms bad head day toys in - choose things that are kept just for this- bubble blowing is great and normally quiet, maybe a DVD that is loved but kept for special treats, books, ha even a nurses/doctors outfit if you have to. Try and give stars and stickers on a 'you have been a star and helped mom' chart.

NEVER be ashamed to build a network of support and use it. You may feel to ill to go to playgroup but if you have a friend who could take your kid you trust you can use 'You have been so helpful this week I have asked *name* to take you to *activity child loves* as a special reward for being so good'.

The housework really will keep- just make sure the core basics are done by an adult such as the bins taken out, the toilets and sinks cleaned. If you do get DLA consider the advantage of having in a person what does to tackle the heavy housework that no child should have to do.
Be wary- some kids will try and do your job for you so watch out for that happening and let them know you love them enough not to let that happen. Your still their mom and will get in some extra help [somehow]

IF you live on your own be aware that SS have a duty to assess the needs of child carers and disabled parents so haul them in and ask for some help.

Homestart can help beleagured moms of kids under 5- they cannot take the kids out without you but they can play with young kids and give some practical help so you can get some rest.

Its okay to order a takeaway home delivery to feed your kids from time to time- just budget for this as an emergency and save it for the worst of days.

Set yourself one realistic task to complete per day and if you manage more then its a bonus. Its okay to pace yourself- you know if you do too much it really will hurt and you could loose a whole week instead.

If you have a good day do not try and do all the outsatnding housework- try and do something fun for and with the kids or even *shock* your partner.

Make time to communicate with one another even if you end up lying in bed with your head in a bucket whilst you try and tell your kids a bedtime story from memory because you sure will not make sitting on their beds with a book. I found if I was in bed my kids understood I had a bad head better than when I tried lying on the sofa and would be far more co-operative. With young kids just remember they will need to pop in and out to check your still there so try not to shout even when it hurts.

Be creative and think how you can run your home and spend time with your kids from a darkened room.

Let them know it has name- what to do in an emergency and who will look after them if you need to go to hospital and that none of this is their fault.

Anyone else found useful ways to cope with chronic migraine and a tribe of young kids?


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Re: Chronic Migraine.

Post by Sheena Hulston on Sat Jun 18, 2011 1:19 am

Thank god I dont have young ones to look after but I can have between 5 and 7 to feed each night between 5 and 6 o'clock depending on what hours they work and what time they are coming in and going out its a nightmare.
So like you on the good days I bulk cook Usually Chilli , Spag bog, curry and lasagne as these can all be bulk frozen and I can do individual portions as well for the odd stray ones as well.
I do food that I can cook AM as in the afternoon I am usually on the slide down hill. So all food is re heatable.
Yesterday was Quiche I made two so 1 for tea with salad and 1 for them to snack on today.
Jacket potatoes are also great if the oven is on for 4 you may as well fill it up with 10 or more cook them through and freeze them then 10 mins in micro then you can have jacket and cheese, beans , chilli, curry or tuna any of which my deluded lot can do without my help!!!
I have my daughter in law to be, living with us but she works 6 days a week but she does the top floor of the house for me, next floor no one is there at mo. our floor needs done once a week cause dogs sleep in our room so hubby has to carry hoover up for me!! i can manage from there, Shower shine and shower hardly ever needs done!! Cant remember last time I mopped my bathroom floor!!
Two dogs BIG HAIRY DOGS love them but main floor needs hoover every day!!! but lucky if its every second.
and downstairs Oh teenage den!!! I get hubby to yell ...it gets cleaned...washing gets picked up... it gets dirty again...so I dont go in there.
Everyone puts on there own washing I just put ours ON I iron it I enjoy ironing and it calms me down and relaxes me as the room is out the way and quiet everyone hangs out and brings in the washing IF asked so I think im quite lucky really and organised.
souds easy when you type it but today I have emptied the dishwasher!! and sat down !! Bad aura !typed this and thats it.
Need to go to town but just cant do it!! Its only a 5min walk x Will go 2moz.
I do little and often but always AM sleep in afternoon as pills say so, then if it allows I take dogs for a walk with hubby in evening not very far as we let them off the lead and they do there own thing and wear themselves out.
Other tips are Shut your eyes and let it all pass you bye it will get done one day!!
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Re: Chronic Migraine.

Post by Katie on Wed Sep 07, 2011 11:07 pm

*Joy*

I have just been told I must have six months off by the neurology clinic. Nothing they have tried so far as worked so its time to try s---l----e----e---p inducing drugs therapy in the hope that will reset my silly brain into better behaviour. Not sure I fancy spending six months as a happy smiling snoozy aubergine propped in the corner but the neurologist classed by abilty to function from migraines as severely disabling to the point they have to do something to try and break this. Just hope they manage to get that one through to the DSS. Freak

What a darn shame I do not get a nice swedish home help called Sven as well.
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Re: Chronic Migraine.

Post by Sarah on Wed Sep 07, 2011 11:32 pm

Bloomin' 'eck, that doesn't sound good news for you. Sad Really hope it helps though.
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Re: Chronic Migraine.

Post by whitzendJane on Thu Sep 08, 2011 12:53 am

Although it sounds nice to think about trying to sleep through the pain the reality of putting your whole life on hold is daunting. And like you say getting other members of the family to 'comply' is not a task I would like to take on board either.

My other half has been told that they think he has AUtism..which bit of the spectrum he is on we are still waiting to find out. I do kinda understand how hard it must be to try and 'leave everyone to it' at times like this.

I can see why the neuros have suggested it...and don't laugh at my next suggestion cause I think I already know the answer to it..but is there anyway you could get additional help through social service?

(I can heard the sound of your hollow laughter from here Katie).

I really hope you can break the cycle of this soon.

Take care

JAne
xxx


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Re: Chronic Migraine.

Post by Tee on Thu Sep 08, 2011 7:21 am

wow - sounds daunting.......................BUT its only a few months, and your health is worth that - if this breaks the cycle it will be 6 months well spent!


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Re: Chronic Migraine.

Post by Katie on Sat Sep 24, 2011 10:29 pm

So far...getting just a bit more sleep. When pain wakes me now I KNOW another nasty migraine is about to land. I would like to do a bit more than creep around my home but for now if I can manage to focus for two hours a day- that is doing good. Bad day
My GP sang from the same sheet as the neuro clinic along with the 'You do know this is your last option?' refrain. Ah well give me another week and the thing should swap for ECH which will prove light relief for a few days untill the increased pain level and horners makes me shriek. Uni have granted a medical leave of absence but will let me do a little light research on the few good days I get so I do not become de-skilled.
Just wish there were jobs willing to fit round this but so far I have not really found one.

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Re: Chronic Migraine.

Post by Tee on Sun Sep 25, 2011 7:38 am

Hang in there hun - you are doing really well - give it a few more weeks and it should settle Hug

Please the uni are backing you Smile What are you studying?

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Re: Chronic Migraine.

Post by Katie on Sun Sep 25, 2011 6:47 pm

BA[Hons] Applied Theology & BSc Health & Social Care.
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Re: Chronic Migraine.

Post by Tee on Mon Sep 26, 2011 3:15 am

wow - go girl - hard subjects - I wish you all the luck with those Smile

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