Amitriptyline for migraines in the body??

[Theosmum]

Hi, I've been assumed by a neurologist that I have migraines in the left side of body, symptoms include pins and needles, weakfeeling in leg and arm, numbness etc and have been prescribed amitriptyline since January, follow up appointment is beginning of March with a diary I've had to keep. For a while I thought they were working to even having no symptoms days, where as before id fill a page with a day worth of symptoms. Well slowly the pages are filling back up. Also the past 3 days I've been getting a burning rash on my face and neck that last a few hours. I know that this is a side effect and should see a doctor but with my follow up being less than a week away I'm thinking ride out? Also has anyone got success stories with migraines with aura or hemeplegic (Think that's how it's spelt)

[lupus-support1 Administrator]

The word hemiplegic means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. ... The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent.

Go to your GP immediately with these new symptoms. You need to be fully evaluated. Try & take a picture of the rash.

With good wishes,

Ros

[Theosmum in reply to lupus-support1]

When I get my symptoms a headache never follows and I get weakness but feel more weak than i actually am eg can still walk and carry things I'm just very aware of my leg and arm and I have symptoms all day every day but worse on a night. Currently waiting for a doctor to ring back. Thank you for replying!

[MaryF Administrator]

Hi, I always photograph any symptoms I have that are suitable for a photo, rashes or changes in skin colour are always good ones to do. I presume you have had the test for Hughes Syndrome/APS? Keeping a list of your history and symptoms in bullet points is always a good idea. Many on here also have Hemiplegic Migraines, some find they improve on the correct medication and management of their Hughes Syndrome/APS. If your symptoms are worsening and you are getting new worrying things happening, I would ask to see your GP in advance of that appointment, it all gets documented, or ring 111 if your surgery is not open.

I enclose this paper for you: amjmed.com/article/S0002-93...

MaryF

[Theosmum in reply to MaryF]

Hi, hope no tests for anything just described my symptoms and had a check for my reflexes. I've took photos and waiting for a doctor to ring back. Thanks for the reply!

[MaryF Administrator in reply to Theosmum]

Here are the three tests needed: ghic.world/hughes-syndrome/..., usually the GP will do two sets 12 weeks apart, and a good idea if they are testing you for lots of things to do your Folate, Ferritin, D and B12, best of luck. MaryF

[Theosmum in reply to MaryF]

Yes my b12 was low I've had 3 injections to see if my body will hold the boost of the vitamin, back to see the gp end of March to talk about it. My gp just rang back and suggested to stop taking them and take pictures to show my neurologist and also see if my original symptoms get worse without taking the amitriptyline.

I'll suggest these tests with my neurologist, thanks!!

[amy1808]

Hi , I have exactly the same thing . My. Neurologist changed me to nortriptyline . When I took more than 30mg of amitriptyline I couldn’t breathe 😱. I have been so much better on the new ones . Although having a flare at the moment and I’m on day two of all symptoms coming back 🤬. The huge problem is Hemiplegic migraine have the same naff symptoms of APS which I also have .

[Theosmum in reply to amy1808]

Did you have a nightmare even getting to see a neurologist? My doctor sent me for xrays and had multiple blood tests all coming back clear (not sure what they tested for) I've had symptoms for years and my gp told me to not come back and see how I get on!! After seeing him for months and months I went to see a different gp who straight away referred me to a neurologist. Sometimes when im at work it's a nightmare I 'hurt ' so much but can't really call it hurting cos it's so hard to explain I just call ut a 'dead leg' or a 'dead arm'.

[amy1808 in reply to Theosmum]

Hi , I don’t get any pain, it’s like my arm and leg is made out of rubber just no strength in them yet if they say grip something it’s really strong , weird .

I had private , nhs , private again and none had a clue what was wrong . I eventually went to guys in London to see on of Prof Hughes team , they said I must be under one roof so all consultants and access all my notes . I eventually got to see neurologist at Salford , after 40min interrogation he said your very complicated and there’s a lot going on but I know what’s wrong with you !!!!! He prescribed Amitriptyline and with in 48 hours there was a massive difference , I still have off days but nothing like I used to have , I used to dread waking up 🙁, this past 3 days has knocked me for 6 as I haven’t had a bad day for over 12 months . I’m just preying it settles down now and quick x

[amy1808 in reply to amy1808]

Forgot to say I had MRI’s , bloods , echocardiogram, lung function , ECG’s the lot , only thing they found was a leaky heart valve!!

[Theosmum in reply to amy1808]

God, you have had a nightmare! My neurologist is in Sheffield which is ideal as I'm from Doncaster so really easy. My tablets worked for a while but my symptoms came creeping back while still on them but after getting a rash an out of hours doctor told me stop taking them. Seeing the neurologist Thursday I'm quite excited and going to offer to pay for an me if he doesn't offer one cos I want 100% confirmation it's these hemeplegic or whatever migraines and nothing else going on. Fingers crossed you stay symptom free!! X