If they are on Facebook get them to join the UK Migraine Support page as there are so many suggestions on there and it really helped me. There is also the Migraine Support Charity and their website is also a great source.Hi, I asked my relative, here's their reply;
I've tried Botox, and I've tried Ajovy (which is similar to Aimovig) which was the injection I had bad side effects from, so I've declined to try others that work the same way! Keep em coming lol
So the search continues! Thanks for all your suggestions Margaretta and TwitTwoo, I am sure there is something that can help
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My migraines have got more frequent over the last few months and I'm not sure why. I started a new job a few months ago but it's the same amount of screen time and less stress than the previous one so don't think it's that. I take sumitriptan to prevent them and it does seem to work if I have advance warning but it makes my body feel like lead and makes me so tired. Sometimes I don't get any warning and sumitriptan doesn't seem to have any effect then. I've started using Migraine Buddy as someone suggested but I can't see any triggers or trends.
Takes time, be patient.
Using a diary helps. I discovered that I get migraines when I don't drink coffee in the afternoon. The last attacks have all occurred then. I don't drink much coffee, one cup in the morning and one in the afternoon, but that's obviously extremely important for me to avoid migraine attacks.
Oh that's bizarre! I'm still going with it but can't see any patterns still. I've had three this week though which I have not appreciated
Did anyone panic that it was something more serious than just a migraine? Currently had two migraines in the past two weeks, one lasted a full week and the other 3 days 
you can get your eyes tested which can show if there are any issuesDid anyone panic that it was something more serious than just a migraine? Currently had two migraines in the past two weeks, one lasted a full week and the other 3 days
I did the first time I had one. My parents called the doctor out .Did anyone panic that it was something more serious than just a migraine? Currently had two migraines in the past two weeks, one lasted a full week and the other 3 days
Currently in this boat - had an MRI yesterday as I get something very similar to cluster headaches (as in how quick they are) but with the full on pain of a migraine in the right side of my head. I get these around 10-20 times a day, and on the worst days I get a bright red ear too! Also started to get nose bleeds out of my right nostril, pain in my neck / shoulder blades, and blurry vision with extreme fatigue even if I sleep for 10+ hours!Did anyone panic that it was something more serious than just a migraine? Currently had two migraines in the past two weeks, one lasted a full week and the other 3 days
I'm hoping they can work out what it is as it's now affecting my career, and being 25 I also want to start thinking of a little bub
I find it hard to not focus on it as you read things on the internet, but I also don't know any of my family history as I'm adopted and no longer have contact with my biological parents (ones dead, the other is an asshole)
Fingers crossed all comes back okay! Keep us posted. How long until you get your results?Currently in this boat - had an MRI yesterday as I get something very similar to cluster headaches (as in how quick they are) but with the full on pain of a migraine in the right side of my head. I get these around 10-20 times a day, and on the worst days I get a bright red ear too! Also started to get nose bleeds out of my right nostril, pain in my neck / shoulder blades, and blurry vision with extreme fatigue even if I sleep for 10+ hours!
I'm hoping they can work out what it is as it's now affecting my career, and being 25 I also want to start thinking of a little bub
I find it hard to not focus on it as you read things on the internet, but I also don't know any of my family history as I'm adopted and no longer have contact with my biological parents (ones dead, the other is an asshole)
Thank you, me too! I never really worry about my health but this is stressing me out
I believe 2-4 weeks xI am really struggling now. I’m now on to week 5 of my headaches. Over the last 5 weeks I’ve had naproxen, zomitriptan, rizatriptan and propranolol all which have done nothing. I had another appointment with the emergency gp on Monday who prescribed me co-codomal. This takes the edge off the pain but it’s still there.
My symptoms have been getting worse as pain is now worse when I lie down, it’s waking me up during the night and this morning I took a funny turn. I went to the bathroom and I was so off balance I thought I was going to collapse. The whole room was spinning and I also had two experiences where my eyes went black and I couldn’t see then the vision came back. I ended up phoning 111 and they didn’t think I needed to visit A&E (which is fair) and she said I just need to speak to my gp again.
I have a follow up appointment tomorrow but I just feel like I’m not getting anywhere and I’m not being taken seriously. I asked to be referred and the doctor on Monday said he doesn’t think I need to see a neurologist and they just need to manage my pain. I have a constant ringing in my ear and I also have a twitchy eye. Can anyone help or give some advice? I am reaching the end of my tether! I haven’t been able to leave my bed all week!
My symptoms have been getting worse as pain is now worse when I lie down, it’s waking me up during the night and this morning I took a funny turn. I went to the bathroom and I was so off balance I thought I was going to collapse. The whole room was spinning and I also had two experiences where my eyes went black and I couldn’t see then the vision came back. I ended up phoning 111 and they didn’t think I needed to visit A&E (which is fair) and she said I just need to speak to my gp again.
I have a follow up appointment tomorrow but I just feel like I’m not getting anywhere and I’m not being taken seriously. I asked to be referred and the doctor on Monday said he doesn’t think I need to see a neurologist and they just need to manage my pain. I have a constant ringing in my ear and I also have a twitchy eye. Can anyone help or give some advice? I am reaching the end of my tether! I haven’t been able to leave my bed all week!
id make an appointment at the opticians and have an oct scan that can show some issues,also too many medications can cause the headaches too which is annoying.
same sort of thing happened to me and an eye test flagged it.
x x
what did the eye test flag up? X
raised intercranial pressure Would have been fine if my gp had taken my worries seriously
Has the GP discussed prescribing a preventative medication such as Amitriptyline? If they aren't prepared to do that then you're well within your rights to request that they refer you for an appointment with a Neurologist who will. You might need to get a second opinion from a different doctor though. I'd argue that is impacting your life to such an extent that 'managing your pain' isn't cutting it!
Sorry you're having a bad time. I hope the pain lifts soon.
ooh this is a good point. i'm on amitriptyline for chronic pain, had my dose upped from 25 to 35mg to help with insomnia a month ago. haven't had to order my usual naratriptan on this months prescription but i hadn't made the link until now. tbh if i was in your position @toffeejelly i'd be asking for an MRI if all the meds you've tried aren't doing much. how are your sinuses?
(think it's finally kicking in for my sleep too but i noticed the dry mouth creeping back in after a week or so, if you are prescribed it it's worth persevering)
Sorry you’re in so much distress. As someone else commented that sounds like a concoction of medicines and they might be working against each other (especially as you subsequently mention amytripline too).
Ensure you are taking no nsaids (paracetamol, ibruprofen etc) as these can trigger migraines if taken too often.
Some natural things which could help are ensuring you are not dehydrated drink at least 2 litres of water a day, a daily magnesium supplement and taking 400 mg of riboflavin pure B2 a day. https://medlineplus.gov/druginfo/na...oflavin by,pain experienced during a migraine.
I would also push your GP for a referral to a specialist NHS migraine clinic. Research where the clinics are and the name of the consultant and put it in front of your GP. Charities like the Migraine Trust have advice about getting referrals. https://migrainetrust.org/live-with...linic?,healthcare professional within the NHS.
100%. It took seven years for me to be referred to a neurologist for my migraines - I hadn't been aware it was a thing and was only flagged up by an Urgent Care doctor who pulled up my records when I attended for out of control vomiting in association with a migraine (my usual prochlorperizine had for some reason not worked and they injected me an anti emetic instead). She looked at my records and was shocked I hadn't been referred to neurology, said it was a must.
The NICE guidelines explicitly say you should be referred to neurology in certain circumstances:
- Seek advice/refer to neurology (with urgency depending on the clinical situation) if:
- A complication of migraine has developed.
- Atypical symptoms (such as motor weakness or poor balance) are present.
- The diagnosis is uncertain.
- Optimal treatment in primary care does not adequately control the symptoms
Scenario: Adults | Management | Migraine | CKS | NICE
O would print this out and present it with your demand for a referral and perhaps mention you will put in a complaint if they refuse to refer you despite you meeting the NICE recommendations for such. Ask for a different doctor if possible.
GPs are such a crapshoot. Some are great, some are actually quite disinterested and robotic in my view, and have little interest in thinking outside a lazy knee jerk set of responses.
Just here for a self-indulgent moan really.
I am coming up to 21 years with my cluster headaches and really I wish they could F off. After a horrific bout in 2019 that left me unable to teach (I now volunteer 5 days which means when they are bad it doesn’t matter if I need to be at home). I feel completely at their beck and call. I have oxygen and Gammacore but that basically means I’m not screaming like I used to, but I’m still in pain. Anytime anything is stressful, or the weather changes, or it’s hot, or…I’m hit. I’ve had a crappy morning with house stuff abnd I have to go out to get my mother a present but I just can’t. She told me I had a low pain threshold the other day because I always seem to have headaches so now I feel even more tit.
Wallowing session over.
I am coming up to 21 years with my cluster headaches and really I wish they could F off. After a horrific bout in 2019 that left me unable to teach (I now volunteer 5 days which means when they are bad it doesn’t matter if I need to be at home). I feel completely at their beck and call. I have oxygen and Gammacore but that basically means I’m not screaming like I used to, but I’m still in pain. Anytime anything is stressful, or the weather changes, or it’s hot, or…I’m hit. I’ve had a crappy morning with house stuff abnd I have to go out to get my mother a present but I just can’t. She told me I had a low pain threshold the other day because I always seem to have headaches so now I feel even more tit.
Wallowing session over.
@LifeOfMog did you get your results?