Bad migraines

[Doey1962]

Hello everyone, I hope you are all staying safe and well. Just wondering if anyone is suffering from very bad migraines, I am getting them on an average of 2 a week, some lasting a couple of days, and the sickness is awful, I seem to just get rid of one and bang, I wake up early hours being sick with a terrific headache.

[diane46]

I was getting them all the time so bad I couldn’t lift my head flashing lights in my eyes but my gp put me on amitriptyline 75ml at night you can start low has 25ml and go up it’s really worked for me I can’t tell you when I last had a migraine and I was having at least two to three a week

[Doey1962 in reply to diane46]

A big thank you Diane

[CJT37]

Yes I’m getting migraines all the tome

[heatherevans28]

Yes I have always suffered with terrible headaches but had a sudden onset of visual migraines last September. I lose vision on my right side completely and then it slowly returns with visual disturbance and the headache. They last days. When it first happened my doctor sent me straight to the eye hospital because I couldn't see at all, so they did lots of tests which all showed it was 'just' a migraine.

I've recently had an MRI to rule out any underlying causes and am now waiting to see the neurologist for medication recommendations. Have you had any tests done or seen a neurologist? If not, I would ask your rheumatologist to refer you. x

[Jumper99]

I have APS as well as a lupus-like illness. Migraine is a common symptom of APS. When I was first diagnosed I was getting awful migraine and had been for some time. No being sick luckily but eyesight problems, terrible pain, couldn’t stand light or noise and completely out of it. Just lay on the bed all day. At the worst, I had bad migraine symptoms for 5 days a week. So I really sympathise with you.

Nothing helped even after diagnosis and treatment with warfarin etc until a neurologist put me on amitriptyline. I was started on 10mg a day for 10days then increased to 20mg for 10 days and was told to keep raising the dose every 10 days until it worked with a maximum dosage of 50mg. As soon as I got to 30mg my migraine pain disappeared. I’ve been taking it for over 15 years now. Very occasionally I will feel like I’ve got a migraine with no pain but that’s all I get now mostly.

I’ve known a couple of APS sufferers who have been very sensitive to amitriptyline and one used to take just 5mg a day. Even on 10mg she would just sleep all day. So we found it best to start at the low end of dosage and work upwards.

I hope you can find something to help

Judi

[Jmiller623]

I’ve had migraines all my life since puberty.

Things that work for me - triptans (I use naratriptan, longer acting than imitrex) for abortive therapy, beta blocker and aspirin has helped prevent them.

I’ve never tried any of the TCAs or anticonvulsants like lamictal or topamax. I don’t need anymore sedation. I fight to keep my head up on my shoulders as is.

One thing I did notice is they lessened quite a bit after stopping birth control, so that might be worth exploring as well if you’re on it.

[Doey1962]

Thank you for your reply, but I had a hysterectomy at the age of 32 lol, I have had migraine like you since puberty, but these are much more often, some weeks every day, but on an average of twice a week, I am very sick, and they can last day's, for example I was very bad from early hours Monday morning until this morning, I can now feel one starting again, they never seem too end,

[rlupus]

Hi yes me to I was put on amitriptyline 125mg and it has really helped I still get q a month but so much better.

Speak to your gp or consultant see if they can help you .

Stay safe .

[kareng74]

I was getting migraines, was hospitalised with one that lasted 3 weeks solid, I couldn't eat, drink, lift my head from the pillow. I have been on propanolol since and have not had any. Tried to reduce the propanolol recently and got a headache so increased my dosage again and all good. Amitryptaline was horrible for me with the side effects. Hope you get it sorted 🙂

[Doey1962]

Thank you, if I don't get on with it, I will suggest Propranolol, so thank you for that, they are driving me nuts

[LittleSteve]

Hi. Sorry you are suffering. Docs tried me on lots of different drugs without success and eventually put me on Botox injections. Have about 30 injections all over head and shoulders every three months. Doesnt stop the migraines but lessened the frequency by about 4 days a month. Not working so well now and consultant says may try me on new drug that has jus been approved for people that have tried everything else. Guess I'm trying to say there is always something else to try if something doesn't work for you. Big hugs everyone.

[Doey1962]

Thank you I really appreciate all the replies,