Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

3 week migraine

27 replies

Lkakpk · 15/01/2022 18:53

So I’ve been diagnosed chronic migraine but I always wonder if it’s REALLY chronic migraine as I have spells literally aw severe as the first day that last weeks upon weeks . My longest was probably 6 weeks and I cried daily . Currently week 3 of an awful spell with blurred vision ( eye test ok ) . My worry is it has features of iih - more painful lying down and whooshing in ears but neuro is adamant it is chronic migraine and I don’t fit criteria of iih . I’ve also had suspicious optic nerves but have reviewing last years scans my nerves are just naturally tilted and crowned particularly on one side .
Does anybody else have these spells ? Constant throbbing with ice pick headaches throughout day too ? At end of my tether and waiting a nerve block

OP posts:
Original poster
Lkakpk · 15/01/2022 21:24

Bump

OP posts:
Santahasjoinedww · 15/01/2022 21:31

What 'self help' things have you tried aside from medication?
And what meds?
For me I use Imigran nasal sprays. Naked in a cold bedroom but under a duvet. With a first aid cold pack over the worst area. And try and sleep. Or at least relax knowing no dh /dc will be knocking..
Cream crackers with proper butter.
Few squares of chocolate.
Red apples.
Cheese..
All food items show some respite from the pain.

SilverHairedCat · 15/01/2022 21:39

What meds have you taken?

Original poster
Lkakpk · 15/01/2022 21:41

@Santahasjoinedww hi !
Wow I’ve tried a lot ! Proprananol , topamax amytripline candersatan . Just started on magnesium . Issue I have is I’m in due ttc again so can’t try another preventative at the minute .
Maxalt melts help when I have what I call a classic migraine - ie aura followed by headache .
These long lasting ones though nothing helps , tried cool patches , plenty of water , even bit of caffeine . Nothing touches it . It’s like my body gets into a cycle and it just breaks when it breaks if that makes sense . Pain is constant

OP posts:
SilverHairedCat · 15/01/2022 21:53

You might need a different triptan. Frovatriptan is excellent for longer migraines as it is in thy system for longer. Also a different preparation like a nasal spray.

Anti sickness meds will also help you get the benefit of any treatment you try to take during an attack as the gastric system goes into stasis.

I also have chronicle migraine and none of the new treatments are apparently used if you're TTC like the CGRP injections, Botox etc. I had to promise not to TTC and use contraception (not an issue, DH is infertile).

My record was a 4wk attack. Apparently its called intractable migraine. You might want to contact the OOH GP to ask for alternative meds.

Santahasjoinedww · 15/01/2022 21:53

Imigran do tablets which didn't work like the nasal sprays. Ask GP to try them!! I have had them for 35 years! They work for me unlike anything else I have tried!!
And the proper activated cold packs are nothing like a small cool pack-can buy in bulk online or from Boots.

Original poster
Lkakpk · 15/01/2022 22:32

Hi ,
How often do you have them ? It’s awful isn’t it !

OP posts:
Original poster
Lkakpk · 15/01/2022 22:33

Tried the Meds but will definitely try the cool packs Thankyou

OP posts:
userxx · 15/01/2022 22:39

@Santahasjoinedww

What 'self help' things have you tried aside from medication? And what meds? For me I use Imigran nasal sprays. Naked in a cold bedroom but under a duvet. With a first aid cold pack over the worst area. And try and sleep. Or at least relax knowing no dh /dc will be knocking.. Cream crackers with proper butter. Few squares of chocolate. Red apples. Cheese.. All food items show some respite from the pain.

I tried the nasal spray for the first time last night, game changer! I also eat my way through a migraine before the pain gets too severe anything carby and high fat.

Kitkat151 · 15/01/2022 22:45

My daughter has opthalmoplegic migraines.....affecting her 3rd cranial nerve ....these headaches used to last around 3to 5 weeks when she had them....she would have double vision then her eye lid would drop and close for several days.....she tried all the usual preventatives ....she was on the migraine pathway at our neurological hospital.....she tried acupuncture with little affect and has now been having Botox for 2 years which has made a real difference......she very rarely gets a migraine now and when she does she goes straight to our local a&e and has IV paracetamol infusion....IV saline and O2 therapy and IM antiemetic and a couple of hours later she feels much better.....her neurologist says if the Botox stops working she can try the new self injection which is only needed once a month, for people with episodic and chronic migraine

userxx · 15/01/2022 22:51

@Kitkat151 I can't even begin to imagine how horrific that must be, a 3 day migraine depresses me.

zoomies2021 · 15/01/2022 22:53

I have iih - optic nerves no longer swollen but I still get headaches so not sure. I know it is a defining symptom but many people seem to have the headaches when the nerves aren't swollen. Pulsatile tinnitus is another symptom - again defining I think. Means nothing though if the doctor won't consider it. If you have the money I would recommend going private - they have a bit more time (same doctors of course) and might be willing to try stuff?

Also get migraines (feel different to pressure headaches) and sumatriptan works for me. When I was TTC I didn't take it but the doctor told me I could if I needed to

Original poster
Lkakpk · 15/01/2022 23:03

Hi @zoomies2021 . When your daughter was bad was the pain 24/7 and did she have blurred vision ? Sounds so similar ! I’ve actually got the monthly injection but can’t take due to ttc shortly . It’s so frustrating . Botox never worked for me but I’m trying my second nerve block soon . It’s just hard to believe its migriaine when they last so long !

OP posts:
Original poster
Lkakpk · 15/01/2022 23:05

@zoomies2021 also on your next thread about iih . Sorry you have that :( that’s my fear . I am actually private but doc says my nerves would be a lot worse and no paplidema . I do have the pulsatile tinnitus when lying down which worries me but seems to be dismissed as migraine still

OP posts:
cushioncovers · 15/01/2022 23:06

Op I feel for you I also suffer from chronic migraines which last for days. I get them weekly and have tried everything.

Kitkat151 · 15/01/2022 23:17

@Lkakpk

Hi *@zoomies2021* . When your daughter was bad was the pain 24/7 and did she have blurred vision ? Sounds so similar ! I’ve actually got the monthly injection but can’t take due to ttc shortly . It’s so frustrating . Botox never worked for me but I’m trying my second nerve block soon . It’s just hard to believe its migriaine when they last so long !
My daughter had pain 24/7 when she was having 3 week episodes.....her migraines got worse in pregnancy and in the first few months after pregnancies.... she’s 27 now and had her last Baby over 3 years ago..... she had nerve blockers but with little effect....shame Botox hasn’t worked for you....hope you something soon that works
Kitkat151 · 15/01/2022 23:18

@cushioncovers

Op I feel for you I also suffer from chronic migraines which last for days. I get them weekly and have tried everything.
Have you been prescribed the new monthly preventative....one self injected jab once a month
Original poster
Lkakpk · 15/01/2022 23:21

@cushioncovers hi , oh it’s awful isn’t it fee for you too :(. How long do your spells typically last?

OP posts:
zoomies2021 · 16/01/2022 00:00

When I have a migraine the tinnitus is worse - this is when the iih is controlled so could all be interlinked. There are iih forums etc (Facebook also) where there are people who have the symptoms but no diagnosis. I can't think of anything that helped iih other than the specific drugs. And of course because I have it I tend to assume it is the cause of all headaches for all people!

Original poster
Lkakpk · 16/01/2022 00:19

@zoomies2021 did you have optic nerve swelling ? I have this fear of having it and it going undiagnosed but I suppose I should trust the specialists . I am not overweight and I don’t have noticeable papiladeama which are both red flags I hear

OP posts:
MoiraNotRuby · 16/01/2022 00:21

There is no scientific evidence for it, but consider getting a daith piercing- its stopped my migraines.

cushioncovers · 16/01/2022 08:09

Kit no I haven't. The gp insisted I try Toprimate first. But it's certainly next on my list to discuss with her. So fed up of all the meds and their side effects. Think I have tried everything in the market now.

SilverHairedCat · 16/01/2022 08:25

@cushioncovers your GP can't prescribe Botox or CGRP injections, only a neurologist can.

cushioncovers · 16/01/2022 10:30

Thank you for that info.

zoomies2021 · 16/01/2022 11:33

I did yes. I also am not overweight - consultant found my case very "interesting" as I didn't fit all the hallmarks. But the thing is now my optic nerves aren't particularly swollen but I still get bad headaches and have pulsatile tinnitus so to my very untrained eyes it does seem
Like "low level" high pressure can cause the headaches but not be enough to cause papilladema (spelling??). Sometimes over lockdowns there were delays in getting the medication and I had to go without for a couple of days - no way near long enough for the nerves to swell again and I felt like I was back under water with loud tinnitus and a bad head. I don't know - not a doctor and don't understand how it all works but there are many people out there who seem to fit the criteria without the optic nerve swelling.