Migraine talk.

Considering this is a migraine forum, we don't do an awful lot of it do we?

I am counting myself very lucky, my migraines have (dare I say!) all but disappeared. For the time being anyway. I still have the almost daily headaches but I still think of myself as one of the lucky ones.

How is everyone else doing?

I have my 6 monthly medication review on Tuesday, it'll be interesting to see if the doctor says anything because I'm finally seeing my regular doctor again as the last months has been full of doctors appointments due to non migraine related things so I have seen any doctor available (with mixed results!!).

Tomorrow I am attempting to start learning to drive for the second time after a 5 year hiatus, I'm excited and anxious because it'll be the first time I've gotten behind the wheel since my migraines got worse 3 years ago and I am not a very relaxed driver so it'll be interesting to see if this sets my head off at all or if my treatment is working as well as it seems to be (1 migraine every week at the moment down from 6 a week).

Best of luck on the driving, Natt! That is my grand plan if my migraines ever get more under control - at the moment I have far too many bad days to cope with learning to drive again (I was learning years ago but had to stop, due to getting RSI in my wrists from work!)

Not great here. I'm a slave to my hormones, and they make my migraines bad almost all the month round. Plus my periods are gradually becoming more frequent (with age). AAARGH - can't believe how many more years I'm likely to have of the things (periods, I mean)!

One piece of hopefully positive news is that I had a dodgy tooth that was extra sensitive, and triggering migraines (much to my dentist's disbelief). I thought I was going to have to have it removed, but the dentist has redone the filling, with an extra protective layer at the base, and... so far much less of a problem, which I'm thrilled about.

Oh, and the other positive thing is that, if I drink decaff tea on my 'good' days, I can see off a migraine with a strong cup of tea if I drink it immediately that the migraine starts! If only I had more good days, this would be a really amazing remedy. As it is, it's incredibly useful though.

Driving was successful!! The instructor was lovely and I only have a bit of a niggly headache from the fact it was so warm and bright, which can't be complained about really!!

That's a great achievement! Hope it continues for you.

It's difficult witsy. No one comes any more, so I don't bother to post links etc. no disrespect but I have been having a really tough time since the Botox went wring last July. I'm happy to keep the forum going, but it seems most people find it easier or preferable to go to Facebook

Myself I get locked out of here half the time. It seems to be a bit incompatible with iPad. But I do check in when I can

I am now living on triptans. Botox was,the last thing for me.
I have take 10 so far this month. I'm far from happy,about that.
But between the waking migraine and tmj. All I can think a out is getting out if pain.

My grand daughters christening Sunday. Been unable to. Go anywhere for weeks so not confident ill make it.

Well done on driving natt. I have my RAV sitting outside, driven it once this year, a whole mile

Sorry to hear you're having such a rough spell. I totally know what you mean about having no option other than the tripans - I've had 3 days on the trot with them (thanks to the usual period nonsense).

It's such a shame people don't come on here, as I really don't like using Facebook groups much.

I ended with 10 triptans in a row. I have no idea why I flared so badly.
I hate to take them, but I prefer to stay alive.

Urgh, what a nightmare for you. Really hope you're through it now.

I struggle with triptan rebound migraines and keeping the balance so much. I'm currently paying the price for the amount I ended up taking during my period. But what's the alternative?

I have no alternative. But what is Triptan rebound. How do you know please ?

It's just that the more triptans I take, the more migraines I get (they are exactly the same as my normal migraines). I was the same with codeine, so no longer take that, but obviously have to take something when it's really bad.

Interesting Sarah. I was told rebound causes interim headaches and they have to be different to your normal pain to be rebound.

I took 22 after the Botox made me bad.
But next month took 15.

Was told no rebound.

Wish they'd make up their bloody minds.

How strange. I've never heard that said about rebound migraines. They are exactly the same.

I just wish I could find a solution that doesn't give me rebound attacks.

Actually you are to first and only person I've known say that. On the group and previously on here, everyone has said they are different. They are rebound headaches, rather than migraines.
Are you sure you don't just have a lot of migraines. ???

Seriously though, if they'd make up their minds....I mean even doctors can't decide, then you and I wouldn't be pondering over it and thereby less stress.

We aren't treated well considering our suffering are we ??

This is very weird, as I've never heard anyone say they are any different! And I don't even understand why they ought to be different. Especially since there are people who think headaches and migraines are all fundamentally the same, just different in their intensity. All my migraines are centred from the one place, just near my eye. My TMJ pain is on the other side of my head.

edit: I should add that I rarely get migraines with aura anymore, just the 'common' sort without aura.

I do indeed get a lot of migraines, but the frequency goes right up if I have a period of a few days where I have to take a lot of triptans, and then comes back down again if I manage to ride it out for a bit (or at least have a few clear days without them). So yes, I definitely get rebound attacks.

I got myself into a nightmarish cycle of rebound attacks quite a few years ago, when I was taking 6 Nurofen Plus tablets a day just to keep going. When I cut them out gradually, it was difficult, but I did benefit from it. Again the rebound migraines were all the same though.

I can't help but think the docs just know very little about the mechanism of migraines. If they don't know that, it doesn't give me a whole lot of confidence on a treatment.

I can't find the comments on the FB group Sarah, very few of us seem to have the problem...which figures when they are saying 2/5 %.

But if Natt comes in here, she may recall the discussion..
They are medication overuse headaches,or rebound headaches, migraine doesn't figure in the name...

My neuro was very specific to me that these were interim headaches, not extra migraines.

I agree I don't think they really know what they are talking about.
They can't even agree with each other, what hope is there for us to understand..

Found a PDF

[You must be registered and logged in to see this link.]

That was a depressing read. It suggests we have to give up absolutely all medication for 6 months. It just can't be done.

I don't really understand what they are suggesting either. If the pain was a headache with a migraine superimposed on the top, as they seem to suggest, then... it's a migraine, surely?

My head hurts too much for all this!

I know. Actually there is quite a lot on here if you search.
I just read stuff going back to 2011

Here is a piece I posted from Peter Goadsby. "God"

How can we distinguish MOH from other headaches and Migraines? Differentiating between a tension-type headache, for example, and MOH can be difficult. There are, however, some very discernable differences between MOH and a Migraine attack. Migraine pain is worsened by activity; MOH tends not to be. MOH is also missing other Migraine symptoms such as nausea, vomiting, phonophobia
(sensitivity to sound), photophobia (sensitivity to light), hot flashes, chills, dizziness, and so
on. According to Goadsby, et al, withdrawal symptoms usually last two to 10 days. Those symptoms may include: withdrawal headache, vomiting, arterial hypotension,
tachycardia, sleep disturbances, restlessness, anxiety, nervousness. Other experts in the field
have written that it can take weeks, a month, or even longer to end the MOH. Cycle.

I can't even begin to relate to that. I get the same nausea etc as I do when a migraine gets out of control.

We're all different, I guess, which only makes it more complicated!

My problem with reduction is that I've never been able to withdraw from everything completely. I've withdrawn caffeine and ibuprofen completely, but could never stop the triptans, just try to restrict their use as best I can.

If you get the same symptoms with your considered MOH headaches then according to Goadsby and Andy dowson, and others, these are not rebound. You are, like myself getting a hell of a lot of migraine

I don't take anything else for my head but triptans.
Without them I'd be dead. I can't cope with them pain.

I take anadin extra if I get headache if im sick...I don't get headaches other times. I also try them sometimes for the myofascial pain /tmj. Not great, but help a bit sometimes.

I have been told by my neuro and 2 GPS, and the pain clinic, despite the amount of triptans I take, I'm not rebounding. It's all migraine

It's interesting you've been told otherwise. Everyone else I've encountered has said the rebound heads are quite different.

It's so wrong we are left to have these discussions because they don't really know. We deserve better. X

I've always been left to figure out the whole rebound thing myself. No-one even mentioned it years ago when I was taking 6 Nurofen Plus a day. No-one even asked me how many I was taking. I think doctors are at least a little more clued up now than they were.

I often wonder what would have happened if someone had told me about medication overuse all those years ago - maybe the migraines wouldn't have got so out of control, as they definitely increased in intensity the more I took, as well as frequency. Still, without a time machine, there's not much point in thinking along those lines, I guess!

I can only go by my own experiences though, in that, if I take too many triptans I get significantly more migraines as a result. This can't be a coincedence. So, for me, triptans are a bit dangerous (but necessary), and my rebound attacks are the same as my migraines (and therefore not easy to differentiate between, but it's enough for me to know that if I can have a bit of a break from the triptans the migraines do ease a bit).

It's interesting to hear that you have some degree of success with triptans for the TMJ pain. For me, the TMJ pain on my left side doesn't respond to triptans at all, but once it moves over to the migraine location (which it often does), then I can take a frovatriptan and stand some chance of shifting it.

Sarah. I'm sorry I don't know what I put. But triptans don't do anything for my tmj. However tmj can cause migraines. It can be the sole cause and its not a well known fact. So the frova hits the migraine regardless of the cause. But no help with the tmj pain itself. Hope that's clearer than whatever I put before.

Regarding the triptans. It's logical for me that I take more triptans because I have more migraines. If I get a break I don't get less migraines. I am having less, so take less frova.

I just had to take 10 consecutive ones. But I never considered that was rebound because of what I've been told about them being different and these were my usual migraines. After the 10 days I just went back to my every other day with occasional 2 day break.

For me, they are all migraines. I've been told I don't rebound, and thank god because I really need the triptans.

Doesn't sound as if its much different for you. And as you say, if you can have a bit of a break from triptans you get less migraines....maybe like myself, you get the break because your migraine eases a little and not the other way around. Either way, if you need them, you need them
I've been told just take them...so I do ,

Now where is everyone else in here ?????

I think you meant the anadin extra helps with the TMJ, Pen. I think that's where Sarah got confused

The sun has come out here more in recent days and all it's doing is reminding me why I prefer winter. On a positive note, I found out my friend had pinched my sunglasses so I now have them back which means I can survive the summer a little easier at least!