Reading through all posts: After... - National Migraine...

National Migraine Centre

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Reading through all posts

babs1234 profile image
11 Replies

After spending hours reading through most posts and comments, I honestly think we are banging our heads against a brick wall ( certainly feels like I am most of the time) there are so many different types of migraine, so many different triggers, so many different drugs, so many different remedies. What helps for one person can give another a very bad reaction. 28 million Americans suffer with migraine and still no one can come up with an answer. I just wish that non- migrainers understood what we are going through and even more employers and the DWP. I was told I didn't fit the criteria for sick pay and to change my job ( I was a carer) I wish I knew what job I could be fit for when most of the week I wake with a migraine. Anyway not giving up will carry on trying this that and anything else anyone suggests. Good luck everyone xxx

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babs1234 profile image
babs1234
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11 Replies

I follows Pins on Pinterest, shows how individual migraines are, different types of migraines and how people cope. It has helped me a lot.

babs1234 profile image
babs1234 in reply to

Do you have the link for this please, thanks x

in reply to babs1234

Type Pinterest in your search engine, Google, and then you have to log in. You can log in using Facebook which is very convenient.

Claudie4 profile image
Claudie4

I think you're onto something there. I am once again awake with my 3:00 a.m. migraine. I have tried everything except botox.

I give up, no one has any answers. Not the Headache Clinic or my GP. Although my GP is more concerned than the Clinic

Good luck to all of us...my shot is kicking in...thank goodness. When I need to I give myself 4mg shots.....and don't need to go to the hospital.

They say I have 2 contributing factors, heriderity on both sides and Epilepsy.

I don't think they really know.

Having cataract surgery and then going to try to go back to work.

Have you tried botox? Depending on where you live, Neurologist Dr Wilkinson is lovely and is the man you need to see to get it on NHS. But you need to fit a certain criteria. Have a migraine at least 15-20 days of the month and have tried at least 3 preventative prescribed drugs. If you need anymore advice, message me! I've had 3 lots now and its made a difference!!

babs1234 profile image
babs1234 in reply to

Hi. Thanks for the inf. Where is Dr wilkinson based? I haven't tried Botox but after the Amitriptilyne I feel very reluctant to try another preventative. I was like someone with dementia for 6 months then the pain started to come through. Dr told me my next option is propanol but I've heard so many negatives stories on that one. Off to the docs this afternoon will definitely mention Botox..thanks again

SouthFloridaLady profile image
SouthFloridaLady

nytimes.com/2015/12/13/opin...

babs1234 profile image
babs1234 in reply to SouthFloridaLady

Thank you for this. It's very interesting and certainly gives us some hope. X

Moon_Struck profile image
Moon_Struck

Hi Babs - totally agree with your post. We are banging our heads against a wall - the scientists still have so much to discover about migraine and the huge variance.

"I wish I knew what job I could be fit for when most of the week I wake with a migraine"

Can certainly agree with you on this. Since migraine returned at age 44 (9 years ago at menopause), it has made my working life beyond difficult. For certain reasons, I haven't worked for quite a few years but now feel unemployable due to the CV gap and with 3 day wipe-out migraines that can come out of nowhere, who on earth would be employ me - unreliable doesn't begin to describe me! I thought care work but what if I get a migraine, I'll be letting down vulnerable people.

Do you work at all Babs?

How do people manage to hold down jobs with migraine - the thought of starting work terrifies me.

Was really hoping your daith piercing would prove successful - has it helped in any way?

x

I must admit amitriptyline did not help me at all and made me far worse. I'm currently on sumatriptan again to see if this will work but as everyone else I'm struggling. the Daith piercing seems a good avenue and I'll be trying it soon. I heard accupuncture is good? I currently have a headband which has magnets inside that helps me a little. As others have said, I wish non-suffers would understand our pain, and the dwp. I have other issues as well and these together cause me to have outbursts of anger and uncontrollable problems. I wish there was a cure as this affects everyone around.

Suludo18 profile image
Suludo18

Just throwing this out there...you said "when you wake with a migraine". If you're waking up with a migraine, could be occipital myalgia, which is causing more a problem for me lately than my classic migraines. Just saying...

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