After 4 years

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After 4 years

Post by Katie on Tue Jun 21, 2011 10:06 pm

Of working with the Headache Clinic to try and get control of b.a. migraine and ECH I have given up. I have had this for decades and its not going to magically get better just because some Dr wants it to. The last neuro clinic they admitted they could not control the migraine although they did still hope to do something about the ECH- buy it a coffee maybe? Freak

Just spoke with a DSS DLA advisor, thankfully I have kept all the hospital letters and indepth diaries. The final straw was it taking over 30mins to make a mug of tea whilst my left eye is not functioning and I have yet another facial pain migraine. I get so many the neuro thinks the only option my nerves have is to focus it in a similar place to the ECH. In honesty if I have to have migraine pain I would prefer to have it towards the back of my head and not down my face and neck as that sets neuropathic pain off. Grr.

At this point I hope to be able to find something part-time but there is no way I could manage a fulltime job if I tried . Been there before and ended up having to repeatedly do medicals. If I get the pace wrong I can set off a stasus migraine and those buggers really hurt.

The good news is social services are comming out to assess my eldest disabled adult sons needs as I am struggling to look after myself let alone him. I could do without his drum and bass at all hours of the day and night when it hurts.

Now all I need to remember is send off for the 12 month pre-payyment cert so I can arrange Eddie Stobbart to deliver another prescription of triptains for me.

Right now I am clutching sumatriptain nasal sprays like they are smarties and I am objecting to being able to physically do so little. Migraine with the pain level of cluster headache as it tries to switch into ECH again is not a bowl of cherrys- its more like the pips.

Will try and get an appointment with the GP tomorrow. Pain is waking me up at night and thats not a good sign.
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Re: After 4 years

Post by whitzendJane on Tue Jun 21, 2011 11:43 pm

Hi

I am so sorry you are having a horrendous time of it. I can feel your utter frustration coming across in bucket loads..and no wonder.

I don't have ECH so can only comment as the bystander with a close friend who is CCH now. I am amazed that she even manages to get out of bed..let alone work. Your sentiments regarding work are admirable but quite rightly you have to be careful about how much you can realistically manage.

I have had status migrainous for nearly 5 years now and sound in a similar frame of mind about it to yourself..if I am understanding you correctly here. I too got to the stage where I knew deep down there wasn't much point in hurling everything at the migs, when I was ready I spoke candidly to my lovely Neuro and he agreed that apart from ONSI (where there were no guarantees at all of any improvement) there wasn't any further option at this point.

I did almost get to dread having to start another treatment, get my hopes up, then deal with the depression and anxiety that followed another 'failure' on my part to respond. I can honestly say I felt a huge relief at deciding to take things no further. I can fully understand this is a very personal choice, but I can also totally understand your feelings about it 'won't magically get better because some doctors wants it to'. I know this is no slurr on the medical profession on your part but I read it as a form of acceptance?? I hope I have read that correctly.

As you say the pain waking you at night is not helping and if you know of something that will help then grab it. Lack of sleep is just nature's way of making everything that bit harder to cope with LMAO.

Is this the normal time of year for your ECH to rear it's ugly head? Do you get any warning or do the CH attacks syptoms and mig symptoms blurr the boundries of being able to abort the attacks?

I understand that the pain level of CH is much higher than migs and would imagine that the grinding monotony of mig attacks is just utterly energy sapping on top of that.

You are coping much better than you are giving yourself credit for and I do hope they can help with the ECH and get that more controlled for you. Do you have contact with 'OUCH' at all too? As for everything else..you are up 'doing' stuff to manage your illness the best you can..sometimes until the dust settles for a while that is all we can do.

I truly hope things ease for you soon.

Gentle hugs

Jane
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Re: After 4 years

Post by Katie on Wed Jun 22, 2011 11:52 pm

I now have Tramadol to take the edge off the worst bits of pain. Saw a locum covering for my GP but had the sense to take all the neurology letters I have with me---and my diary. That meant I was not treated like someone who gets the occasional once every year very bad headache and had a GP who went through the books and notes with a lot more care.
I need to use O2 more often so will call the home oxygen team for more cuddly cyclinders. Somehow sounding like Darth Vader in bed at night is not quite how I envisaged my boudior!
Ran through the tramadol and when to use. Been advised to hit the bugger with the max dose of all the drugs [except for the triptains will stick to Rizatriptain as it lasts longer than sumatriptain although sumatriptain kicks in quicker] I can use the max NSAIDS and add in paracetomol.
Going to simply stick with a low does of tramadol for today and see how it hits me as I have not tried it before. If that is not enough will add in more things starting with NSAIDs first. I am also calling the Headache Clinic. This one has teeth and cannot make its mind up if it wants to switch into ECH or carry on as migraine. Blarrgg.

At least the freezer is full and my lot can cook. Clothes are washed and stuff the ironing. May listen to Radio4 iplayer plays and knit to try and distract myself from how ow it is. Would like to watch telly but the light from it hurts far too much at the mo.

If anyone tells me this is just a headache today I may well bean them with the poirtable O2 cyclinder and tell them its just a bump.

Yep pain level at irritable- next step will be whimpering and hoping for death so anything that offers a notch down is welcome. If this does not work will go for another nerve block just so I can sleep.

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Re: After 4 years

Post by whitzendJane on Thu Jun 23, 2011 12:03 am

I wish I had a magic wand for you...thinking of you and hope you can quell that 'beastie' soon..like 'NOW'.

Am thinking 'bugger off' throughts very strongly in the beast's general direction in the hope it takes the hint.

Sounds like you have a plan and now need to sit, knit and avoid anyone too annoying where possible.

Take care and keep in touch if poss.



Hug

Jane
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Re: After 4 years

Post by Sheena Hulston on Thu Jun 23, 2011 12:14 am

Ohhh Blesss Katie feel soo sorry for you been there, done that before I found the meds that worked for me!!!
The stupid idiots saying to me its only a migraine!!! I get them, they said, just go to bed it will be better 2moz!! Yea right! Shove it I used to think , and still do..... they are morons.... I took tramadols and they worked a treat so long as I only took a few a week....popped a pill and relief for a short while...but I think I took 2 at a time...it was a while ago now though. Then I went on something else and they didnt mix so I came off them! But I had a few spare just incase and still used them on the Really bad days....I think we all cheat sometimes.
Hope the knitting works to keep you calm and the pain eases a bit.
Have a slightly pain easier day at least.
Sheena x x
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Re: After 4 years

Post by Tee on Thu Jun 23, 2011 2:02 am

Oh poppet - I am so sorry your having such a horrid time - I do not know that much about ECH but from what I do know it sounds horrendous - as Jane says; its sounds like you have a plan and I wish I had a magic wand to add to it.

Have you ever considered Botox? I have had my first pain AND aura free day this week, the first in 5 years, I have no idea how the Botox is working but it certainly has reduced things.

Hope the knitting is helping - thinking of you - Hug
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Re: After 4 years

Post by Katie on Sat Jun 25, 2011 12:50 am

Managed to speak to the specialist neurology nurse, she has taken my toys away and told me to use my drugs give in and go rest in dark room. It feels very strange taking so many drugs as I try to avoid the risk of rebound headaches. I'm now so knackered I couldn't care less if a pink elephant decides to float on the bed as long as it takes some of the pain. The tramadol is helping but if that doesn't work I can go poke the GP for diazepam-not something I'm keen to take with four kids-on Monday and if that really doesn't work I can go to the hospital.

Been there done that and the idea of being sat in A&E with a bloody awful head has little appeal although I have had nerve blocks done by the neurology team there before and it did mean I could go home and then sleep I'm hoping to avoid it. The plus side was looking like Lady Macbeth minus the make up my sons social worker who could quite believe I could no longer provide the majority of his care. We shall see how this goes but for now I'm on drugs lots and lots of drugs.
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Re: After 4 years

Post by Sheena Hulston on Sat Jun 25, 2011 1:37 am

Ohh Katie
You sound so in need of chill time. I gave up on the glamour bit a long time ago.
I have to face a meal out to night in honour of father in laws birthday and feel sick of thought of it. The others will all be glamed up laughing and drinking and all my old mates will be in this pub....Me dark glasses and jeans who cares I shall have a soak in a cool bath as warmones do me no good now a days attempt to straighten the hair and usually give up half way through, thinking that will do as it strains me.....ohhh I sooooo dooooo NOT WANT TO GO but there you are. I have to. It saves me cooking I suppose
I shall sit there and sip a coke and try to block out the chatter!!!
People will shrug when I say its Migraine that's wrong with me as they usually do and walk off, with my luck the stress will kick off a bad aura before then and now so I will be dragging my leg , dropping my fork and drooling, great!!!
Ohh the joys of living now, we all have them I want to curl up in bed as well switch the lights off and sleep. Somedays I wish the world would go away and leave me alone!
I wish that for you too.
So have a giggle at me tonight trying to eat my food and fending off morons when your tucked up safe and secure with a banging headache at home babes. x x x
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