Migraine Advice

[Nelly's mum]

That sounds like either Basilar or Hemiplegic migraines. I have the former but fortunately it is very well controlled these days.
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My neurologist prescribed me a low dose of amitriptyline which has been brilliant. I take rizatriptan for acute attacks which isn'trecommended for my type of migraine but I found sumatriptan did something weird to me.

I think topirimate (sp?) was the other potential preventative option but the side effects sounded brutal so I'm glad I managed to avoid it.

Hi TwitTwoo ! Thanks for your reply, I passed your info on to my relative, they've already tried these meds so the search continues to find something that helps, or even better, stops the attacks.
When it's happening 2-3x a week it is taking over my relative's life, I just feel there must be something that can help

 

[SamKe]

Did you have it done at a piercing parlour?

yes cause I wanted it done but my neurologist told me it was all rubbish so told me not to bother. I did it thinking I could prove him wrong.

So interested in this ear piercing thing!! Never heard about that.

Botox i had in my forehead for cosmetic reaaons...still had mild headaches. Not sure where the botox should be injected for migraines specifically?

One thing that REALLY changed things was a tooth guard. Fitted by my dentist. I used to wake up with AWFUL headaches that lasted all day. Reduced significantly since the toothguard its unreal. Anadin Extra also helps and tons of water.

I had the Botox in forehead,back of head and shoulders by the nhs headache clinic

 

[Dancing_in_the_dark]

Sorry to hear that.
How are you coming off it?
With any of these meds you need to taper off gradually, you can’t just stop, your body has to adjust.

So cut down the dose gradually.
if you’re on 100 mg, go down to 75 mg for around a week, then down to 50 mg, then down to 25 mg or alternate days. In my experience it takes 4-6 weeks to come off meds like this successfully with low side effects.

Yes I’m slowly tapering following the neurologists advice it’s just horrible. I think it’s being made worse by the fact when I got the prescription it was also a different brand to normal and I’ve found changing brands affects me. I know that sounds silly but with some meds if you get it made by a different company it can affect you slightly different. Im just feeling shitty and sorry for myself right now it’s only like 4 more days to go before I finish them

 

[toffeejelly]

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)

Fingers crossed all comes back okay! Keep us posted. How long until you get your results?

 

[uncleted]

Your brain also needs rest and recovery after a migraine, your serotonin and dopamine receptors are going haywire. I get very weird symptoms during prodrome like yawning and stuttering or slurring speech, feeling irritated, sad and anxious. Then the confusion sets in and I’m almost relieved when I get the migraine because I feel like I’m literally going crazy. Sumatriptan made my arms and chest heavy, with tingly fingers and toes. It’s a strange condition for sure

here’s my treatment plan/timeline if anyone’s interested or helps:

2019: start getting what I think are sinus headaches around my eyes and head. Go to an otolaryngologist for possible sinus surgery. I’m also dizzy. She finds no blockages and refers me to a neurologist.
Start triptans and amitryptline. Amitrypline gives me horrible dreams and nightsweats, no relief.

late 2019: move onto topomax (topiramate)my headache days increase from episodic migraine to chronic- 15-20a days per month. Topomax decreases my migraine days but the side effects were too much to tolerate.
move onto 120mg of Propranolol, this works for me but not completely.

2020: finally approved for Botox. Some improvement with propranolol but not enough. While waiting for insurance, I do an elimination diet. In reintroducing gluten, I find that it increases my migraines and the pain severity. I’ve cut this permanently.

2020-21: go through 3 rounds of Botox every 3 months, get my life back. Almost migraine free. Cut the propranolol.

2022: relapse due to insurance and missing 3 Botox treatments. 2 hospital visits due tostatus migraneous. I am admitted to a top headache center now if I need infusions so don’t need to go to ER. And back on track for Botox, back on propranolol and trying monthly injection (Ajovy) to bring me back to baseline.

what works for me:
Botox, Midol (US) and pamprin (US) these are period OTC meds but they work better than NSAIDs for me.
Also when bad vomiting spells occur, I find relief from epsom salt baths and alternating hot and cold water for relief.
I take 500mg of Magnesium Citrate per day. CBD and CBN gummies, some THC edibles help my anxiety during an attack. I also do therapy to manage during the pain; I had a tendency to want to fight it and it made it worse.
I am having a bad cycle right now of status migranous (irretractible migraine) and my neuro gave me olanzepine, an antipsychotic used to slow brain activity in those experiencing mania. It worked! Usually I need a steroid pack and multiple IV treatments to kill an attack this long.

hope this helps x i know this is

definitely get symptoms but it's mainly a lot of pressure in my head i guess? generally feeling shit and then an extension of any of my usual chronic pain / chronic fatigue symptoms. basically an okay day becomes a bad one in the space of minutes / hours and then i'm in bed for x amount of days until the rebound/lingering headache is my new normal and fades (this can take weeks if i'm just generally stressed out, but it's the same feeling as a new attack so i'm always second guessing if it's a fresh cycle or i'm just in a constant state of tensing my face muscles). also sometimes get gastrointestinal pains or cramps etc but the only consistent thing i can think of is the head pressure and then that *is* the migraine i'll experience, just gradually builds to 100% intensity.

the head pressure is a weird one though because it's temples, forehead, eye sockets, nose bridge, jaw, behind my ears when it gets to 100% but i know a migraine is starting bc it feels like i'm clenching, furrowing my brow or focussing my eyes even though i'm not. like i'll stretch my face out, squeeze my eyes open and shut, can feel my skin moving but my bones (this doesn't sound medically accurate but it's beneath the skin) still have the same tension. they almost feel dense? i've described it before as my skin shrinking but it's actually more of the inside pushing out and my skin can't expand.

100000% relate to the brain fog / disconnected feelings, irritability and confusion but again that happens anyway with the pain and cfs so i've never put that down to migraines, v interesting that both could be a factor. i also get yellow spots when looking at stark white sometimes (imagine printer ink splodges on a piece of plastic, like a slightly transparent colour tint) but this isn't when i'm having an attack.

I could have written this, your symptoms are almost identical to mine. I see a maxiofacial surgeon actually, who specializes in facial migraine. I just got lucky that that otolaryngologist knew him and he was on the floor below. It makes me believe that some of this an inflammatory reaction, especially with the swelling around the face. My eye will sometimes droop, if migraine is on that side. Have you tried cutting out certain foods or an antinflamitory diet? I know it’s awful having to suffer with migraine let alone cut out foods you enjoy. The only sense I can make of the gluten reacting to me is that I have a celiac intolerance and it causes inflammation, triggering the migraine reaction. That’s a wild guess though

 

[getmeoutofhere]

I used to get them when I was a teenager. Cheese and dark chocolate were to be avoided completely. Whenever I had them I used to make myself sick (weirdly it seemed to ease the pressure in my head. I wouldn’t recommend it obviously) then lie in a dark room with a cold wet flannel over my forehead - as you can tell I’m not doctor

Not had them for years though so not sure if I grew out of them or going on the pill or something helped

 

[bcfc999]

Yes my auras are like @uncleted has described! I've always had them whenever I've had a migraine but usually the headache comes first, then weird hyperawareness of my arms (don't know if this is a common thing cos I know it sounds mad), then fizzy vision that's kind of hard to describe. I've felt a bit stupid all day too, not really able to concentrate.

 

[margaretta]

I 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!

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.

 

[Melian]

I've seen various GPs and neurologists over the years and they've not been that helpful. As I cant take beta blockers, there isn't much I can take.

I was put on topiramate. It worked but some of the side effects were unbearable. I'm now (I've not come across anyone else who's had this) slightly deaf because of it.

I currently take pregabilin. It works but I hate the hunger and weight gain.

I've had to cut cheese out of my diet as this is a trigger. As are my periods. I've also been put on the pill which helps. (a 5 day period was a 5 day migraine. I'm only getting them at the start for one day)

 

[Misssj80]

Have suffered since I was 9, although GP told my mum I was too young for migraines (?), am now 41 and don't get them as often as I did and in my early 20's was on beta blockers as was getting one daily. The only things I find that help are a cool shower/bath, and trying to sleep.

 

[Into_the_tunnel]

I get cluster headaches. It took a while for them to be diagnosed. I am on topiramate (which did wreck everything for a while, but after 13 years am ok on it). I wouldn’t recommend it though.

I was also given amitriptyline but that was horrendous and I had to come off after 2 weeks. Lots of people swear by it though so maybe ask. Also the combined pill is a definite no. So, if you are on it, it is best to change to the progesterone only one.

I am now on the topiramate, oxygen when the clusters are awful and Gammacore. I have given up my job and volunteer because they are so bad. I wish people could understand migraines more because they aren’t just a headache, they can ruin your life.

 

[knivesnflowers]

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)

 

[knivesnflowers]

Was fine going to work yesterday, but once I got there I had aura without migraine which I didn't know was even a thing? That lasted about an hour as I took sumatriptan straight away. I then had an awful headache all day, felt achey all over and really nauseous. Still haven't recovered I'm now out of sumatriptan but apparently I picked some up from the pharmacy last month as my prescription was collected... God knows where they are but I could do with having them to hand.

(still not got my head around what is / isn't an aura tbh) but this is what was happening to me with sumatriptan! sometimes it didn't work at all for migraines but if it did then i'd usually be left with a lingering headache for a few days which would make another migraine a lot easier to trigger as i was already feeling sensitive. i was probably over cautious with the no more than two in 24hrs but that and nothing else working (except now naratriptan) made them really hard to shift

 

[Shoegal17]

Thanks so much everyone, I always feel better after posting here! Had a chill day yesterday and although I didn't have particularly healthy meals I did get 3 fruit and veg in there. I feel a lot better today. I've made a note of the circumstances around my last few migraines but wonder whether I do need to do a really in depth one like you say... I just know I'd struggle to keep up with it even though I know it's fairly basic. Does everyone else keep diaries?

I think you can get an app called migraine buddy that you can track things on.

 

[Kim Mild]

I used to get aura migraines . The gp gave me some tablets ( it was years ago so can't remember what) but they made me drowsy so they were a last resort.

The gp changed my pill and advised I gave up dairy products. I did and I don't get migraines now so maybe that did the trick .

 

[bcfc999]

Thanks so much everyone, I always feel better after posting here! Had a chill day yesterday and although I didn't have particularly healthy meals I did get 3 fruit and veg in there. I feel a lot better today. I've made a note of the circumstances around my last few migraines but wonder whether I do need to do a really in depth one like you say... I just know I'd struggle to keep up with it even though I know it's fairly basic. Does everyone else keep diaries?

 

[JoeBloggs]

yes cause I wanted it done but my neurologist told me it was all rubbish so told me not to bother. I did it thinking I could prove him wrong.


I had the Botox in forehead,back of head and shoulders by the nhs headache clinic

Ah yeah it’s hit and miss if done by a general piercer. I had it done at a medical clinic that test your pressure spots with acupuncture first then pierce exactly where you need it, it’s much deeper than a standard daith.

 

[toffeejelly]

I 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!

 

[Kim Mild]

I had migraines regularly from my mid teens to mid twenties, then it switched to near-constant headaches. Now I'm back with a weird mix of both, as of about a year ago - I have naproxen for my headaches and sumatriptan for my migraines. Sumatriptan has about a 50:50 success rate for me. My migraines are definitely not as bad as some here - I get an aura, tingly or numb arms and pounding head, nausea sometimes. I can usually sleep it off but had one last night and have had a banging headache all day. I think my triggers are stress, lack of sleep and generally not looking after myself properly. I've been in a bit of a slump the last few months and I know I need to pick myself up but it's a struggle.

I find the aura part worse than the actual headache.
Anyone who experiences an aura migraine has my sympathy.

 

[StrawberryAscot]

I find the aura part worse than the actual headache.
Anyone who experiences an aura migraine has my sympathy.

My visual auras are quite short, but very aggressive. I have been trapped in many a parking lot waiting 30-45 min to pass before regaining my vision (rapidly moving zig-zags with traditional, all vision in my left eye for retinal migraines). If I don't take my rescue med to "abort" the migraine when I have the visual aura, the pain will set in for days and often be completely unresponsive to meds. It took me decades, dozens of RX meds and all my money to figure it out though.