Migraine Advice

[Chickenandgravy]

I suffered terribly, triptans were the only thing that helped I honestly had 3 a week. I cut out wheat for something else (skin related) and I honestly get one migraine every 3 months if that! Obviously I had an intolerance I didn't know about but I just got fobbed off all the time and I lost out on so many years being in bed with the pain

 

[SamKe]

I’ve had migraines for a long time,tried lots of medication and was on Botox for a few years which worked.I’m currently injecting myself monthly with ajovy which worked but I feel it’s stopped working as well so I’m going to try and get back on Botox,

 

[Blanche Hunt]

I’ve had migraines for a long time,tried lots of medication and was on Botox for a few years which worked.I’m currently injecting myself monthly with ajovy which worked but I feel it’s stopped working as well so I’m going to try and get back on Botox,

Is it via your doctor you get the Botox or just through a practitioner? I’m so tempted to get this done just to try and see if it works.

 

[SamKe]

Is it via your doctor you get the Botox or just through a practitioner? I’m so tempted to get this done just to try and see if it works.

i was referred to a neurologist after I’d tried lots of medication, the headache specialist injects the Botox in the fore head,shoulders and back of the head.
it’s worth asking for a referral and doing a headache diary (the neurologist always asks for one )

 

[Blanche Hunt]

i was referred to a neurologist after I’d tried lots of medication, the headache specialist injects the Botox in the fore head,shoulders and back of the head.
it’s worth asking for a referral and doing a headache diary (the neurologist always asks for one )

Thank you so much. I’m going to try and have an appt with my GP soon to review my migraines and I’ll ask - I don’t hold much hope as a referral to anyone is like gold dust with our surgery.

 

[Snippysnips]

I got my daith pierced, for me it sorta limited the amount of migraines I got, I'd be getting them monthly an now I can go a few months without one but it didn't stop them fully, it didn't quite work with the headaches either as I still get those

The one time things actually cleared up for me was when I did a 100 day challange where I cut out chocolate, biscuits, cakes, crisps, take aways, fizzy juice, ice cream of all kinds, I done it cold turkey as well an honestly the first week I could have ripped my hair out with cravings but once the cravings left I was actually surprised at how clear my head become, I'd use nuts like almonds if I did get a craving, am back to eating it all now an the headaches are back, I wonder if anyone else is more food related with headaches as it seems maybe I am, nothing else changed when I done that, still kept my sleeping the same an what I did during the day the same, so I think maybe the sugar is what goes for me an the caffeine in the chocolate

 

[LennyBriscoe]

I’ve had a lot of different things over the years. My migraines were worse when I was a kid but I’ve had preventative medicines, stuff you dissolve on your tongue (used to come in a blue box, can’t remember the name of them). I am prescribed Sumatriptan and they work if I take them with two paracetamol at the same time.

 

[Peggy5]

mine fills my whole face with an acid like feeling - sometimes can't even drink through a straw. i used to get really bad nasal burning as an aura (??) but now that happens randomly with no migraine after. i can physically feel the pain move to the other side of my head when I lie on one side too which is maybe weird idk and if it's just around my eye sockets the sensation gets 'trapped' by the bridge of my nose??

Ahhh I’ve never heard anyone describe their migraine like this! This is exactly what I experience towards the end of my migraine it feels like it’s kind of coming down my nose?! So weird.

Mine are 100% menstrual migraines, I kept a diary for 18 months before I finally went to the GP. I was prescribed sumatriptans but they made me feel even more unwell than the migraine itself.

I do feel like mine have improved slightly since we’ve come out of lockdown (as in, they “only” last 1-2 days instead of 8 days per month, and they feel more manageable).

I should add I’ve only suffered like this since the birth of my daughter 4 years ago, previous to becoming pregnant I’d always been on a combined pill and suffered a migraine maybe once a year. Unfortunately I’m not able to go back onto the pill for health reasons

I’d like to look into getting Botox, I can’t imagine my gp referring me though it’s a battle just to get a telephone call with them!

 

[Blanche Hunt]

What are the side affects to the sumatriptans? Do they leave you feeling drowsy?

 

[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

 

[Into_the_tunnel]

What are the side affects to the sumatriptans? Do they leave you feeling drowsy?

I had no side effects to the pills or nasal sprays (but they did nothing to ease the pain). The injection made my heart race and then I felt drowsy.

But, like with anything it is so individual. I can cope with topiramate but others on here hated it (vice versa for the tricyclic).

Hope you find relief.

 

[Peggy5]

What are the side affects to the sumatriptans? Do they leave you feeling drowsy?

Yeah, around 20 mins after taking them I’d get extremely drowsy and have to nap for a few hours. Then I generally felt really nauseous and dosile

 

[Giggling Squid]

What are the side affects to the sumatriptans? Do they leave you feeling drowsy?

I feel a little spaced out for a few hours but not even close to the migraine they stop

 

[knivesnflowers]

thinking about it more idk if the meds even make me drowsy or i just got into a subconscious routine of napping bc then i wasn't in pain?? and if the pain is over my eye sockets the only thing i can do is close them ig lol

Ahhh I’ve never heard anyone describe their migraine like this! This is exactly what I experience towards the end of my migraine it feels like it’s kind of coming down my nose?! So weird.

yep to the pain coming down my nose too! more recently it's starting at my hairline instead of just my eyes too - it feels like someone is pulling the skin on my face so tight and then the burning comes after. best way i can describe it is that acidic squeaky feeling in your mouth when you can taste the bile after being sick, but literally inside the face muscles?? very weird and i've not heard anyone else have it either!

 

[GiftedNotFree]

I’ve suffered with migraines since puberty (I’m 31 now). They are debilitating. I’ve found no solutions for stopping one before it starts — if I feel it coming on, it’s coming no matter what I do. I’m not on any form of birth control and coming off those has improved them slightly. Solidarity to all of you fellow sufferers! There’s a long way to go in terms of people / medical professionals truly understanding migraines and how to help treat them.

 

[StrawberryAscot]

I have had migraines with aura since childhood, and have tried every treatment except a piercing. The blood pressure meds were dumped after I kept falling to the ground after waking up in the morning and getting hurt. The only difference on Amytriptaline was the negative side effects. Botox was a nightmare, but I also have EDS and I think paralyzing my neck muscles might have made things more unstable causing more pain. My sister used to work for a Neurologist and swore Botox was a miracle cure for patients.

Zomig is the only oral triptan that has an effect on me, but it only works if I take it the instant my aura arrives (I usually lose my vision for 30-45 min) to abort the migraine. If I don't have an aura, or don't take the meds in time, an injectable triptan is my only option. It has worked most times to relieve the pain. The addition of Zofran to control the nausea was a game changer.

The most effective preventive by far is diet. Preservatives and artificial sweetnors are clear triggers for me. Eating only fresh unprocessed foods made a huge difference. Also avoiding flashing or fluorescent lights. Since I had to stop working my migraines have been much better, but I am concerned that when I go back and have little control over my environment I'll start getting trapped in parking lots again, unable to see while I wait for the aura to pass.

One last thing for those new to migraines. I was warned by my neurologists from day one about taking hormonal birth control, as people who have migraines with aura are prone to blood clots/stroke.

 

[TwooTwooTwitTwitTwoo]

Yeah, around 20 mins after taking them I’d get extremely drowsy and have to nap for a few hours. Then I generally felt really nauseous and dosile

I have a similar problem with Sumatriptan but don't have the same reaction to Rizatriptan. It's odd really because rizatriptan isn't recommended for my type of migraine.

 

[uncleted]

I have a similar problem with Sumatriptan but don't have the same reaction to Rizatriptan. It's odd really because rizatriptan isn't recommended for my type of migraine.

I’ve just found this thread after almost derailing another from going on about migraine advice. In Ireland we have a rake of influencers saying they have a migraine while happily dancing about on their stories..even recommending Sumpatriptan as an OTC remedy..

I found my cure (saved my life- quality wise) and a lot of support on forums. So many women suffer from migraines.
I was diagnosed with chronic migraine in 2019. I had just moved abroad and constantly had what I thought were sinus headaches in Ireland. They started out as episodic, then turned chronic. They didn’t feel like a headache, in fact I went to the ER because my whole right side of body went numb. Speech was slurring, dizziness. Overheard nurses saying I was suspected to be having a stroke. Got referred to a neurologist but was in complete denial. I didn’t really have pain, it wasn’t a headache just tons of pressure in my eye/upper head area. I got a personal referral for a forum, to an amazing neurologist in the US city I now live in. I felt as if no one understood me, he told me they’d eventually turn worse and they did. He’s published online in medical journals for facial migraine, chronic migraine. I want to share my med regime as I was messed around by the system for so long!

We started medication, ended up on;
1) Triptans: sumatriptan, I had the exact same symptoms you’re describing above. Chest pain, sore throat, intense head pain (irony), and palpitations. Rizatriptan did work for me but literally made me stupid the next day, I actually sat at work clicking around the screen the next day (no joke) triptans don’t seem to work for most on the various forums I’ve been on. Wish I’d known that.


2) tricyclic antidepressant route (amitryptiline, nortrypiline) gave me sweats, nightmares, and low mood.
3) topiramate (worked for me! I could now take triptans and get rid of my migraine but the side effects were insane. I had intrusive thoughts, developed social anxiety, word recall - could not remember words like green for example but could fully describe it like “the colour of the forest.” Couldn’t count anymore..and after I stopped the med I had vision problems, could see double of an object but as if it had a shadow. I found this was typical of 50% of those taking it. (Heard Depokote was worse in forum but helpful too. Massive weight gain)
4) propranolol (beta blocker) this decreased my frequency and also helped with some social anxiety I had. I still take it.
5) after failing all of these (as ordered by the American insurance system it meant I was now eligible for Botox) It took 3 rounds (and 9 months but they slowly decreased in frequency and severity) I was just going on work disability at the time as well.

that’s the insurance system here and had I known that I could just stop taking some of these meds that effectively gave me worse issues, I would have been better a bit sooner. I literally thought I was crazy, I had no one to talk to. I get severe confusion and disorientation, anxiety and depression before I get a migraine. It’s my prodrome phase. I’ve been the ER 6 times for irretractible migraine (one lasting 72h or more)
I spent months obsessively googling “triggers” what I’ve learned is, triggers are as unique as your fingerprint. I beat myself down further by not allowing myself chocolate, wine, cheese. I gave all 3 up…for a year. Literally my 4 favourite fecking things and nothing changed! I think it’s total misinformation that certain things cause them.
My Botox had been delayed 4 months due to supply issues, I get it every 3 months. So back with migraines but they’re way less severe. I was up for 2 days straight with one this week.
The internet is full of so much misinformation about migraine.
Because there is little research on it. It primarily affects women. Research shows those with chronic migraine have psychiatric illnesses or other comorbidities such as asthma, fibromyalgia or insomnia etc. So our symptoms were dismissed as psychosomatic.
In the US there are half as many people suffering from arthiritis, but more cures and awareness. This because it primarily affects white men, those in power and (let’s face it) much more likely to complain!!!

TL; DR (too long don’t read) I had chronic migraine for over a year and thought I was going insane, often felt suicidal, and spent days in bed in dark room with nothing to do but google and go onto forums to research this disease. I found a similar post to this on a forum and it saved my life.
If you’re suffering right now you’re not alone.
Also edit; I’m having a 4 day very mild (no vomiting, nausea, little pain but enough to make me miserable) so please excuse any spelling errors.

 

[Melian]

What are the side affects to the sumatriptans? Do they leave you feeling drowsy?

I was given a nasal spray which kept giving me nasal / sinus infections. I don't have a good sense of smell (this was way before covid; so it's not that) now.

 

[Meldrumlurker]

I have suffered with migraine with aura since having severe pre eclampsia with a twin pregnancy. The only thing that works for me is rizatriptan (for anyone that sumatriptan doesn't work for, I would urge you to ask for this, it's more expensive so drs are reluctant to prescribe but the side effects are much better). The other thing I've found that helps is a balm.feom an online company called Herbs on the Hill - I was extremely sceptical and of course it doesn't get rid of migraine symptoms, but whether it's in my head or not, I don't care! It definitely helps and I can't recommend it enough