I’ve been on Pregabalin 450mg and Pizotifen for around 3-4 months now, and I haven’t seen my balance/dizziness really get any better.
I had a review with Dr S this morning, and he seemed quite positive in the fact I had few headaches or ‘up and downs’, even though I explained my rocking and bouncy walking symptoms actually felt worse. He believes that once you get the migraine symptoms under control, the dizziness/balance (as a symptom) then has a chance to correct itself. Its quite confusing to anything I have heard from other Neuros before, especially when you actually feel slightly worse. I kind of expected him to change the medication regime, but he wants me to continue increasing the Pregabalin to 600mg a day. In 10 weeks he may add Topamax.
I feel so skeptical about his approach given that my balance/motion symptoms have stayed the same or gotten worse. I partly think it may be due to the travel nature of my job, which clearly doesn’t help. He didn’t really share much hope of me recovering anytime soon, and said it could take a VERY long time, which having had this for 9 years plus made me feel pretty miserable after the appt.
I’ve been here before, and it does tend to get better somehow. Just so hard to see any real improvement at the moment. And then I start to ask should I quit my job that I love to avoid travel? But would that help in the long run?
So confusing and frustrating, and I’m a ‘veteran’ of this illness. Just hope I’m on the right course with Dr S.
I too am on Pregabalin and Pizotifen, as prescribed by Dr S. The former for a year now and the latter, for 6 weeks. I am on 300mg Pregabalin and 0.5mcgms Pizotifen. Both meds have helped the magnitude of the positional inertia that I feel, but like you, I still have background dizziness. I have few headaches and nausea is gone too.
I also have background dizziness and to be honest, his explanation of getting the brain under control before allowing it to phase out the backgroudn dizziness makes sense to me.
I find that the combination of meds, diet and routine help enormously. I would say the latter is most important to me. If I so much as drive slightly faster to work, or accelerate quickly , I arrive with a whirling head. If I keep things steady and stick to a routine, I have days where I am 95% normal. Sleep and wake up at the same time, watch a prescribed amount of TV, or play Xbox for a set amount of time at a set distance from the TV etc.
Maybe your travelling to different places at different times throws your brain out of a routine? You might travel by different modes of transport, stay at different hotels, get jet lagged through varying timezones etc. Surely it must have some impact on your ability to get better.
Thanks for your replay, and really interesting to hear you are on a similar regime to me provided by Dr S.
I agree, the travel related part of my job does clearly not help, but it’s the one thing (at the moment) that seems to be going well for me.
I’m trying to manage the amount of travel I do, and when I do create strategies to cope (i.e if long haul - arrive a day or 2 before meetings to get good rest and adjust).
I hear you though, it is something I will need to review if its a barrier to ultimately being well.
I’m slightly relieved to see you are making good progress - may I ask did it take some time for Pregabalin to have any effect?
Hi Dizzy,
I found what your doctor told you interesting, about getting the migraine under control and then allowing your brain to work out the dizziness because I believe I may have MAV (was originally diagnosed with Labs) and started the Heal your Headache diet 3 weeks ago. Since starting the diet, my dizzy symptoms have changed and actually gotten worse. Prior to starting this diet, I have had the exact same predictable dizziness for 6 months so my only change has been the diet. I know people say MAV symptoms change over time but I feel it’s too coincidental. I had wondered myself that if I truly have MAV, is changing the diet finally getting my “migraine” under control and now the signals to my brain from the ear are working themselves out in a new way? I am seeing my ENT today and will discuss this with her.
I’m sorry I can’t offer any suggestions, as I’m not on meds at this point.
I to suffer with mav and started to see Dr S in January of this year. I was currently on 40mg of Propranolol and 20mg of Citalapram. Dr S prescribed me Pregabalin and now currently taking 450mg per day. My anxiety has lessoned but my horrible head and eye ms out if sync with brain is still there but I feel it’s stripped it all back to now actually see for what it is. I feel just so ill. I am not back with Dr S until Oct so hopefully see what the next step is? I think adding another med maybe? Any help and advise would be appreciated as I’m at a low again. When minute I’m up and then I’m down…,
It’s just this when moving my head I just feel so washy, it’s real hard to explain. I am doing vrt along side this as well.
Sorry to hear you are taking such a beating - believe me I can sympathise.
If you are in such a bad state, would be it be worth trying to pull your appointment forward? I imagine Dr S will try and increase your Pregabalin.
Often he says a drug is working if your ‘exacerbations’ have decreased (i.e a severe worsening of symptoms from baseline) even though you still feel constantly dizzy.
In my case, savage travel seems to be an ‘exacerbator’ (not even a word), but its not a variable I have a lot of control over at the moment sadly due to my job.
It took a week at 50mg to feel a good effect on my dizziness, but over time, the effect has decreased, even though the dosage has increased. The Pizotifen took about a fortnight for me to see a very good response, unfortunately, I stopped for three weeks and upon restarting, it didn’t have the same effect. I am going to see the Pregabalin + Pizotifen regime through to the end of this year, and then evaluate my progress with Dr S.
I was also taking Citalopram for a while, and that was very good, but there was one strong side effect that a man just can’t tolerate, so I stopped taking it :oops:
