To want to cry from constant migraines?

[britespark1]

Been suffering for around 2 years now since I turned 40. Came on out of the blue, ended up in A&E back then as the initial pain was horrendous, I couldn’t see, couldn’t walk. CAT scan showed an arachnoid cyst/large fluid filled space, nothing to worry about. Various meds tried, previously on Amitriptyline which worked great for a few months then randomly stopped just before Christmas and now I’m on Candesartan. Min dose of 8mg worked for a few weeks then stopped, so a week ago it was upped by my Dr to 16mg. Previously seen by an appallingly arrogant neurologist who begrudgingly arranged an MRI, again nothing on there to worry about and basically said he didn’t understand why I had been referred.

Half term has been hard work, this is the worst I’ve felt for ages and I feel like I’m constantly pretending to be ok. Rizatriptan not working (neither did Sumatriptan before that), Migraleve not working, dispersible aspirin taking the smallest edge off. 4Head stick and tiger balm help for a while. Been sat crying in the dark room that has made no difference either.

I’m back at the doctors Monday for blood tests so obviously I’ll be speaking to them then but for now a just feel so shit. Sorry for the essay

I know this isn't going to help, as none of you will be able to persuade your GPs to test for this, but I have to contribute my son's experience.

He picked up a parasite when travelling. We have a lovely GP who took it seriously, and tried all the recommended anti-parasitics to get rid of it.

He had blinding migraines that started soon after he got home with the bug, and every time he had the medicine, they would stop for about a month.

Then they would start up again. Barely a clear week between them.

Finally, we saw a doctor who treated him off script. No one knows the point in the parasites life cycle where it is killed by the drugs, so he was on large doses for 6 weeks. It's a bit like washing hair for nits 2 weeks apart, in case some have hatched!

Finally got rid of the parasites, and has not had a migraine since. He had them 2-4 times a month for 2 years. Stopped stone dead half way through the 6 week treatment.

Do you have any other symptoms, when not in a migraine? Nausea? Rash? Gut? Just thought I'd ask.

Good luck with all the sensible posts on here, sound a lot more reasonable than mine

I feel for you op, I've always suffered since a teen, maybe 1 a year, manageable with paracetamol etc, in 2019 I got one for 2 solid weeks and since then they have been constant, my record is 19 in a month, I get the hemiplegic type, stroke like symptoms, unable to speak, walk, forget my own name etc

I've tried propranalol , candersartan, Amitriptyline, topirimate, nortriptyline as preventatives and rizatriptan, sumatriptan and zolmitriptan, I've also tried acupuncture, reflexology, changing my diet, exercising, changing my job, cutting caffeine, cutting sugar, everything! I also take magnesium, b2 and Co Enzyme Q10 I am not sure if this helps but it's not caused me any harm 😊

I hope you find something that works for you, I am currently still in search of my magic medication combo

I'm also taking the anti-seizure meds (Topiramate) - although admittedly I only take 1 tablet per day and it should be 2. It has mostly worked to stop (or reduce the severity of) the attacks. I also take Migraleve.

Im so sorry OP, migraines are the worst.

Are you on any other medication? My auntie suffered terribly (needing morphine) then turned out she had a side effect to medication she was on for something else and weirdly no one had realised… sounds silly as it wasn’t new meds but just in case…

I started migraines at puberty, have had them sporadically since including breastfeeding but am expecting the menopause is going to be fun…

Cefaly worked for me.I was referred to the Botox clinic but no longer have migraines using the Cefaly this was recommended from the neurologist.Magnesium can help.Good luck.

Can you get a referral to a Botox clinic they really do help

Hello, sorry about your migraines, they are truly awful. Have you been to your optician recently? My teenage DD suffered for years with migraines. He noticed her eye nerves were swollen and sent her to a&e. They initially dismissed us but we finally were taken seriously and they discovered she has Idiopathic Intercranial Hypertension. Basically too much spinal fluid which puts pressure on her brain and eyes. She needs occasional lumbar punctures and takes medication every day. Still gets headaches unfortunately but not as bad as they were.

DC2 tried propanolol, zolmitriptan and sumotriptan for their migraines - none of them really did that much. What did help at that point was a cold gel pack over the top of their head, along with complete silence, a dark room and sleep. They stil affected them for at least 24 hours though.
What they've found really helps, purely by chance, is Anadin Extra.
It's a case of trial and error, and also persistence on your part, sadly. You might need to try several different medications to find the one that suits you.

[quote britespark1]@KissedintheDark what are the beta blockers called please?[/quote]
Propranolol, op.

Hi , I'm 34 now and have suffered since I was 13 . I get them most days usually I can tone the attack down with an injection , (triptans ) other times there's no stopping them , I have excruciating pain in my head , neck and shoulders and will be pacing around , wailing in pain etc ,.scorching hot showers because that pain takes away from the other pain for a while . Sometimes I will sit in the shower for hours at a time.

I have been to many neurologist , rheumatologist , muscular specialist , you name it , physios etc . There are no answers to mine .

Things that can help if I get warnings are ...

1. full fat coke with paracetamol & ibuprofen. ( I will also take my injection)

1. Putting my head in freezing cold water and my feet in hot water at the same time.

3) diazapam to relax my muscles 4) making myself be sick usually really helps.

I feel.your pain literally, mines ruined my life I have a 6 year old and since he was a baby I have had to drop him off at my mums for days at a time as I cannot see or speak due to migraines .

You need to really push it . I am due to have Botox injections soon and try a new medication as I'm classed as chronic .

Do you get warnings at all? My biggest one is yawning the day before usually I will yawn non stop I can be talking to people and physically cannot stop yawning , most people think of flashing lights etc but there's lots of rarer ones , I also get really moody and short.

Sorry for such an essay ! Xx

Tramadol ,co -codamol all increased the pain for me . Morphine just made me unwel and couldn't look after my son.

Also oxygen helps slightly if it's not severe. You can get this prescribed depending on severity xx

For those that take topitamate...was it prescribed by a GP or neuro?

I really feel for you. Migraines are awful and miserable.

Massive sympathy- I used to get migraines, had my daith pierced as I felt like all I had to lose was £15 - and haven't had once since. I have had a couple of mild headaches when I would have had a migraine, so I don't know if the effect will last forever. But honestly compared to the pain of a migraine, I'd get pierced every month if I had to.

You poor thing, my mum used to suffer terribly. The doctor referred her to the migraine clinic in London dnd she takes inderal nightly. She doesn’t drink but avoids chocolate, coffee at night and cheese as they are her triggers. Sending a hug op

Propranolol worked really well for me for about 6 years until I hit the menopause. I'm now trying topiramate and HRT to see if it helps.

I’m a migraine sufferer. After some trial and error (including Gabapentin which helped the migraines but had side effects) I have 30mg Amitriptyline at night as a prevention and sumitriptan when they come on, I usually have Coke (coca-cola not the hard stuff!) when they come on and stick on cooling gel pads. Another tip is to warm your feet as you cool your head, diverts the blood flow away from your head. I got my daith pierced, I don’t think it made any difference to me.
I definitely find I get more when I’m working or after I’m working, I tend to have less caffeine on a work day, I wonder if that’s a trigger. I’m reading Heal your headache, will see if it helps.

My GP prescribed Topiramate.

I had dreadful migraines from my late teens to my menopause. As well as the pain, I would vomit continuously for hours, which made it impossible to keep any oral medication down, so I was prescribed an anti-emetic suppository. Then I could at least take pain relief.

Acupuncture made a huge difference and reduced the incidence to approx one a week instead of 3-4 a week. Identifying my triggers (fluorescent light, some smells, esp paint & paraffin, getting very tired and going too long without eating) helped me reduce them further, as did a medication called Topiramate.

Oddly, after being virtually migraine-free for approx 15 years, I've recently started getting visual migraines. I get the aura, but no pain, nausea or vomitting. Definitely migraines, though, as sumatriptan makes it stop.

@Housechaos

For those that take topitamate...was it prescribed by a GP or neuro?

I really feel for you. Migraines are awful and miserable.

The GP prescribed it for me.

Have you tried Relpax? It changed my life. Good luck with finding a solution. Migraines are the pits and you have my full sympathy xx

Please find a gp with an interest or at least knowledge about peri menopause, I always got a three day migraine along with my period, zomig rapidmelt was the only thing that helped, a few years ago the migraines increased, was getting them without a period and they were lasting longer, my doctor just I creased the zomig, she didn't believe in HRT when I asked about it (getting other symptoms by then), eventually after far too many years suffering I seen a different doctor, started HRT and haven't had a migraine since, I feel like my life has been handed back to me at last.

I had five years of utter misery with migraines was prescribed Propanol it’s been a godsend, hope you get sorted soon.

I also only had 1 migraine while I was pregnant.. and only a few since (9 months).

Totally feel for you, OP. So sorry it's happening. I woke up with one today, but lucky enough that sumatriptan still works for me (maramig stopped after about 5 years). Got an ice pack (to numb it, then put a hand over to warm up again)? Eat stodgy food? Just a few things that sometimes work for me... sometimes don't!
Hope you manage to get some rest!

My daughter gets really bad migraines.
She cannot take some of the more usual meds because of another condition, so the neurologist suggested Greater Occipital Nerve block injections in the back of the head. Shes just had a second round of these, you have to have them every so often, but they really seem to help.

Cefaly helped me