Just wondering whether anyone has had any success with starting the birth control pill or equivalent in order to get rid of hormonal escalations in symptoms.
I had 24/7 symptoms which have improved significantly since starting Lyrica about 2months ago, but i’m still battling with “mini-relapses” - a worsening of symptoms which occur like clockwork with ovulation, and then for the eight days pre-menstrually.
I’m pretty much up as high as I think I’ll be able to get on the Lyrica due to side effects, so my options are to either add on another migraine drug to the Lyrica, or do something to stop my hormonal fluctuations such as go on the birth control pill (which I came off seven years ago when I first got this illness due to it’s possible contribution to migraine).
Nothing I’ve read really seems to support the use of contraceptive pills for migraine, but having worked my way through a reasonable list of migraine meds before the Lyrica I’m not particularly keen on that option either - though on that subject has anyone added anything to Lyrica successfully?
…this thing remains so totally confusing - always the fear that making the wrong decision can set you back hugely
Dizziblonde - wow at last I meet someone else on Lyrica - can I ask if you’ve put any weight on? I seem to have gained a stone in a couple of weeks! I started it it December and I have seen an improvement except for just before I come on my period! Yesterday was awful for me! I was thinking of going to my GP to see if there’s anything they can do or test for? Have you already done this?
I still building up to the dose Dr Silver wanted ie. 150mg twice a day - next Tuesday is the day I go to the full dose.
I be intested to know anything you’ve come across re hormones and what can be done.
Take care, Tracey
I don’t take Lyrica, but I have taken the contraceptive pill, and I have taken it twice during my life and both times had to stop taking it as it made my migraines much worse. It was the withdrawal week when I wasn’t taking it that was the problem. My doctor suggested that I run 2 or 3 packets back to back, so I had fewer withdrawal periods during a year, but to be honest there was never a suitable time in my diary when I could afford to have a 3-day long migraine with excruciating pain/sickness! Also while I was on the Pill, I found my triptans stopped working, so once I had a migraine I couldn’t get rid of it. My vestibular migraines also started when I was taking this, so I don’t know if that was coincidence or a cause.
But to be honest, I have also heard that the Pill can make some women’s migraines better, so I guess it’s one of the many things that sometimes makes people worse, and sometimes helps them a lot.
Thanks Beechleaf, do you have any idea if the pill you took was combined (eostrogen and progesterone) or progesterone only?. I was advised by my GP that I’d need the latter if I decided to try it due to the increased stroke risk with migraine and the combined pill. Experiences seem so varied and stories like yours really do put me off trying it again, but then I think back to the year before the “big crash” of continuous symptoms, and I was getting headaches and such severe fatigue that I was needing time off from work every month without fail. It’s such a quandry.
Tracey, weight wise I suspect I have piled it on - haven’t actually dared weigh myself of late but the trousers are certainly getting a lot too tight, and the muffin tops, well, they ain’t pretty ;-(. To be honest I’ve had weight battles since this relapse started in the summer as I was initially on pizotifen (mmm, pass the cake and then let me sleep) and piled it on, followed by a stint with Topomax which I figured would at least make me skinny and gorgeous - but no, lost not a pound (just felt like hell), and now with this… Lord help me!. Tried various weak attempts at dieting during this process which generally made me feel really dizzy, so have just resolved that getting well is the top priority as at least then I’ll be able to do some exercise and shift some of the spare tyres around my middle with that. Do you manage to exercise at all? I find it really annoying that if I exert myself my pounding heartbeat then transfers itself to my head and makes me really dizzy.
My doc has set the Lyrica upper limit at 300mg twice a day as I was still getting a lot of breakthrough dizziness/headaches at 150mg twice a day. Have pushed it up fairly aggressively to 525mg day but now seem to getting visual problems and ?dizziness as a side effect. Sticking it out until after my period so I can assess more accurately but think I might need to drop the dose a bit if these effects don’t settle.
When are you back to see Dr Silver? I’d be really interested to hear what he had to suggest on this subject as I kind of trust his judgement with this condition as it was him that suggested Lyrica to me initially (he’s sadly not my doc but he was kind enough to talk to me on the phone a few times). I’ve sadly not come across anything solid really - everything I find that is positive seems to have a negative equal and opposite. Sigh!
I’ll keep looking and will let you know if I come across anything useful,
Can you tell me your primary mav complaints? I just wonder why dr. Silver chose lyrica? I need to listen to his talk again.
My MAV complaints really covered the whole range, headaches, neck pain, allodynia, face pain, all manner of odd feelings of pressure and movement in my head - brain turning in head, rythmic pulsing in head, crazily heavy head. Plus visual disturbances (blurring, swimming, “raining” etc), dizziness and vertigo (walking along and then stop but the world carries on, roll over in bed and the world tips etc). You name it really
I’m afraid I can’t say why Dr Silver chose that drug - he didn’t give his reasons and as we only spoke n the phone he was unable to prescribe it for me. Not sure you’ll find answers to that on his talk either. My NHS neurologist then dismissed it totally when I asked for it and said that it wasn’t effective, however when the topomax that she’d prescribed not only didn’t work, but made me ill, I paid privately to see someone else that I’d met at the migraine action event a few months back.
His viewpoint on my symptoms was interesting in that he describes them as “central sensitivity as a result of a headache disorder”. His view is that migraine was the trigger for hugely sensitised nervous system which was now the primary issue for me, and that the drugs that would be most effective would be drugs used for neuropathic pain (eg pregabalin). He thought the topomax that I was on at the time (and not getting on with) was an excellent drug for headache, but would be virtually ineffective against all of my other (and at this point much more bothersome) symptoms.
I did see really fast results with this even on a low dose other than the occasional short period of “crash and burn”. It’s just this hideous pre-menstrual period which is proving really stubborn, and now because of that I’m pushing the drugs up into the zone where I’m getting side effects too.
Why is nothing ever straightforwards
Hope you’re still managing ok
I took a combined pill. I have to say it was brilliant for sorting out my period problems. I was really quite sad to come off of it, but my migraines got so bad I didn’t really have any option.
I’m on pizotifen at the mo, but trying to reduce it as I have been at the cakes too
Dizziblonde - before this started I was really fit! Running, gym, loads of walking (lake district etc) - anything really and I did it about 5 times a week! This started in April 2010 and since then I’m a couch-potato - I try to do some walking, but it’s more like an old lady shuffling along! After I’ve done a short walk ( 3 miles) I’m wiped out for the day! Some days when I feel good I still think ‘if I feel like this tomorrow I’ll do a jog’ - but then I never feel good the next day!
I’m not sure if I see Dr Silver again - he seemed positive the Lyrica would work, and he’s told me to give it 4 months and then write to him and let him know if it’s worked. I do seem to have improved - the dose he wants me on is 150mg twice a day and next week I’ll reach that. I saw him in December, so it’ll be March before I can contact him again
I’m planning on speaking to my Gp this week to see if there’s anything that can be done about the really bad times I have around my period.
Best wishes to evryone x
Wow Tracey I sure can relate withe the exercise part!! Are you having a lot of side effects for the Lyrica?
Jolivew - to be honest the only side effect I have is that I seem to be growing - and not vertically!!! I do hope that at some point I can exercise again and I used to love it!
Take care x
I am about 99.9% sure that starting the birth control pill is what caused this mess for me in the first place. After stopping the pill to go on fertility treatments, and now being pregnant and due next month, my MAV has improved drastically. I will never ever go on the birth control pill again.
However, I will also say that I have PCOS and do not ovulate on my own (hence the fertility treatments). So I did not get the monthly hormonal fluctuations that most women get.
Hmm, and it’s those fluctuations that are my biggest enemy. It seems like pregnancy is the best state to be in with this condition - though it’s a bit of a drastic treatment plan lol
All of your bad experiences with the contraceptive pill are exactly what I’m scared of, though I do wonder whether this is all linked to the oestrogen in the combined pill and whether the mini pill would be any “safer”. Also wondering about the mirena? Anyone tried it with this condition?
I’m just at my wits end, trying desperately to return to work but it’s like one week I can be fine and then the next I’m a wreck. It’s so hard to make any plans re increasing hours etc with these fluctuations.
How does everyone else manage? Are you working through this Tracey?
Cassada - congratulations on your pregnancy
Dizziblonde - I’ve heard progesterone only contraceptives are much better if you have migraine although I’ve never tried myself. I have a couple of friends using the mirena coil and they both absolutely love it (no periods at all and no side effects).
Dizziblonde - I’m still on what we call ‘modified duties’ and working as and when I can - can be a pain if you’ve got stuff booked in as you never know how you’re going to be and if you’ll turn up! Not sure how much longer that can go on for though - when I last spoke to occ health and told them I’d got ‘chronic migraine and migraine associated dizziness’ their response was “is that it” and they said they’d tell HR that I’d be back on full duties in a couple of weeks! I told them not to bother!
We’ve had a lot of changes at work and there seems to be more and more piled on me - I going to speak to my line manager as all the extra pressure isn’t helping - I’m getting really stressed which makes everything worse! I’m mainly working mornings as by mid afternoon I’m totally wipes out! It still feels like a struggle to get through the day at the moment! Are you still working??
Take care x
I forgot to say this before, but I have been on progesterone-only medication (Prometrium) during my fertility treatments, when the fertility drugs weren’t working and I needed something to start a new cycle. I did not have bad MAV while taking that, although it makes you extremely tired (I’d take it right before bed, and it would be like a sleeping pill for me!). So trying a progesterone-only pill might be a good option.
Hi Cassada, thanks for that. Reassuring to know someone who’s taken it without it making their illness worse. I feel like I’m balancing on a knife edge at the moment. Just starting to get life back a little but knowing full well that this is so precarious that one wrong move (or drug) could send me spiralling back to stage 1.
Tracey, wow, that sounds awful. Can you not get your GP to advise them re your capabilities with this illness, or take in your copy of your letter from Dr Silver if you have one?. What job do you do?. And do you know what your company sickness policy say’s you are entitled to? HR are chasing me for a meeting with me and my manager too - it’s enough to send you into a panic that you’re about to be sacked. If I lose my job I lose my flat - it’s really scary!
I’m also on modified duties though have only recently started back after nearly six months off. I’m just doing four half days a week at the moment, though this will be reviewed soon and I’m pretty anxious about them wanting to increase that. I go in late/leave early in order to avoid rush hour on the london underground, and even with that am often totally wiped out by the time I get home and don’t feel up to going out again. It’s weird as I’d got to the stage that I was getting out and about ok, hence starting back to work, but work seems to challenge this condition much more than general bimbling around or socialising and my symptoms have seemed much worse since starting back to work.
My occupational health consultant summed things up quite nicely - he was dictating his report and said my condition had improved enough to resume “normal activities of living” - I interrupted, to say that my current life was nothing like normal, but he laughed and said to think about it in terms of “geriatric domestic!” Hmmm, sounds about my level :lol:
Just remember, the progesterone I took was NOT birth control, but I’d assume that it would be very similar to a progesterone-only birth control pill. I hope you can find some relief soon!
I took progesterone for about a year due to testing low on a hormone panel. Other than getting my period more sporadically, It didn’t affect my mav at all. It did diminish my cramps, which were terrible. That was nice.
Dizziblonde - I’m not sure how much my GP knows about this illness - I still think they think I’ve got a headache - I don’t think anyone understands how debilitating this illness is!
I’ve been to GP this morning as the report had come from Dr Silver and I wanted a copy - his secreatry has included all the info sheets for the GP, but whether they read them I don’t know!
My job is a firefighter! Luckily when this started I’d been put on secondment working in the community so wasn’t actually on the fire engines - however I could be put back on fire engine at a moments notice so have to stay qualified. When this started last year and I was really bad, I lost all my confidence and the thought of going into a fire filled me with horror - I even had a massive panic attack in a lift! Luckily I have improved since then, but am still not able to committ to being on a fire engine - can you imagine if I was at a fire and it came on!
I am definitely worse at work! When I had a week off at Xmas, I had a good week with very limited symptoms, but as soon as I went back - Wham!
In my opinion occ health have been really unsupportive throughout this, so I tend to ignore them now and don’t contact them!
Take care x
Hi Tracey –
Your job sure does sound interesting and full of adrenalin-pumping action. I would feel the same way as you; I couldn’t imagine running into a burning building with symptoms in full swing. I think for me, it would be the crash after the event that would be a potentially rough ride.
There used to be a really nice girl over at the Healthboards named Firechick. I haven’t chatted to her in years now but I remember her MAV started with a BPPV attack (similar story to Cassada). She was a fire fighter. She eventually got the BPPV and MAV under control and was back at work in the end. Can’t recall if she used meds or not.