The Vestibular Migraine Community

Pregabalin


#1

Hello this is my first post. I suffered for just over 2 years now although my initial attack only lasted for seconds followed by a period of 9 months with some symptoms but not much else then it came back with a vengeance with 3 severe attacks over a 3 month period . The last of which put me in bed for 2 weeks unable to walk or stand basically just concentrating on not vomitting.
I decided enough and forced myself to get out of the house and face the world which was a weird experience at first.
I went to Harley Street and got an inconclusive diagnosis after which I had VRT which helped a little.
Finally last October I was diagnosed with vestibular migraine at the Royal National Throat Nose and Ear hospital however although improved I had not really recovered so I done more research and made an appointment to see Dr SURENTHIRAN who prescribed me pregabalin which I think is helping slightly, which brings me to my question has anyone had any success with pregabalin?


#2

Hi,
I keep saying I’m about to start this, which I am , but I’ve had a lot on recently and have been waiting for the time when I’ll be able to take time to deal with any side effects/teething problems if they occur (otherwise known as procrastinating due to worry).

Can you tell me what dose you’re on and how you feel it’s benefiting you? Any side effects so far?

I’m looking for success stories with this drug too.


#3

Hello KitKat

I am currently working my way up to 225mg pregabalin a day the improvements I have noticed are subtle.
For example I used to get a throbbing sensation in my neck that seems to have gone, also when I first lay down every night I would get a falling sensation and when lying down if I tilted my head to the left I would get a dizzy feeling both of which seem to have resolved.
I still have moments of unsteadiness here and there and some fullness in my ear , as well as headaches but although I am by no means recovered fully I hold down a full time job and I’m reasonably optimistic.
I don’t know which country your in and whether or not you ''ve heard of Dr SURENTHIRAN but he is adamant I can make a full recovery and go back to having a normal life to the extent of a normal diet and no medication.
He told me that the medication is just plasters and when the wound heals you remove the plasters he said although it’s difficult to predict a timeline he reckons 6 months on his MAV diet and getting the dosage right and I should be fine.
Another thing he told me when I feel better don’t make the mistake of thinking I’m cured in his opinion the next couple of months when you reach this stage is critical , so then no overdoing things stick with the diet and the pregabalin. Then your brainstem will heal itself , your balance system will reset itself and your out of the woods.
So fingers crossed I hope you found this helpful.


#4

Hello KitKat

I forgot I haven’t really experienced any side effects apart from maybe feeling a little bit more tired than usual.


#5

Hi Reggie,
Sorry it’s taken me a few days to reply to you. Your experience on pregabalin so far sounds really encouraging. It sounds like you have some similar symptoms to me - I get that sensation in my neck and also the falling feeling lying down and the dizziness when tilting my head to the left in bed. I also get the headaches and fullness in my ears, so our experiences sound very much parallel.
Dr Surenthiran is actually my doctor too and I think he’s really great, but it’s been a while since I saw him (due for a review in the summer). He also said some really positive things to me about making a full recovery and getting back to a life without a special diet or meds. To me, that’s what recovery means; I don’t want some half life in which I’m always modifying everything and thinking about this. Sometimes I forget those positive words though when my symptoms are bad, For a variety of reasons, I elected to delay medication and try just the diet and VRT exercises first. I’ve had some improvement, but not enough to work full time or really have good quality of life so I know the tablets have to be the next stage in my recovery.
Thank you so much for your reply which has made me feel much more positive about taking this next step and for reminding me of Dr S’s very positive outlook.


#6

Absolutely agree that the meds are plasters and something underneath needs to heal! :slight_smile:


#7

Hello Kat
My turn for a soliciting a bit of advice.
You said you just stuck with VRT and the diet .
How do you do the diet ? I’m eating this natures finest maple sunrise cereal for breakfast It’s gluten and wheat free but I’m not sure about some of the ingredients.
Mostly I eat food made from raw ingredients but It’s difficult at five in the morning .
What do you eat for breakfast? Do you have any other dietary tips ? Although Dr S recommends this diet there are no specifics so I would appreciate anyone’s input really.

Thanks


#8

Hi again Reggie,
I’d love to help, because your response to me about the tablets was so encouraging, but I’m worried I may not be the right person to ask, simply because it sounds as if you’re already being more strict with your diet than I am.
For me, it’s been more about eliminating what definitely (in retrospect) I think were triggers: caffeine and chocolate (I’d been a bit sceptical about whether the latter really affected me, but I lapsed over Easter and I think the cumulative effect of that then made me feel terrible). You’ll obviously have Dr S’s list too, so I’ve also eliminated citrus and as many foods with MSG as I’ve been able to easily avoid (if you’re eating mostly raw you’re clearly already doing this). I’ve pretty much had to give up all alcohol (not just red wine) because it seems to excite my brain and make it buzz, which I hate.
So, regarding breakfast, I haven’t gone gluten or wheat free (I just have the kind of stuff I had before - porridge or different kinds of muesli or granola), even though, for reasons beyond MAV, I’ve often thought I should and maybe will soon. Just to get the right info you’re looking for, maybe start another thread about this issue to see what others do, as I could use that kind of advice too. I’m quite new to these boards also but think I’ve seen other threads on diet with good advice.
I suppose because I haven’t yet been as totally strict as others, it’s difficult to tell how much my fairly limited changes in diet have altered my MAV. As I said, I’ve had some improvement (eg I can now read and use a pc again whereas I could hardly do these at the beginning) but how much of that was a ‘time heals’ thing is difficult to say.


#9

Hello Kat

It sounds like I’m a lot further down the line than you .
I’ve been back at work since August and I have been back driving an articulated lorry since January.
When and where did you get diagnosed ?
Did you have all the testing?
Caloric, VNG etc


#10

I had a one off episode of quite acute dizziness at the end of 2015. It lasted half an hour and was very unnerving, but that was the end of it (or so I thought). I saw a GP at the time who vaguely mentioned things like labyrinthitis and BPPV, but as it seemed to be a one off it was left at that. However, at the end of March 2016, I had a few episodes of what at the time I’d have called ‘lightheadedness’ or dizziness, and within days I realised that I had a feeling of motion all the time, particularly when I closed my eyes.
There followed a lot of back and forth to GPs, no one really knowing what it was or what to do.As I think you said you did, I started my own research, as things were rapidly getting worse and I didn’t feel I could go on without some answers. That was how I found Dr Surenthiran, asked my GP for an NHS referral, and was seen by him in July 2016 and diagnosed with MAV.
I assume my prior history of migraines played a part in my diagnosis, as did my symptoms which obviously he (unlike the GPs) must be used to hearing about. As has probably been your experience too, Dr S doesn’t do any physical tests; he just diagnosed me from our consultation.
I have never seen an ENT specialist (that’s where maybe I’d get the tests you mentioned?). One GP felt I should get an MRI just to be sure (as I was - and still pretty much am - getting daily headaches, though not migraines as such), and that was clear. She also spoke about it perhaps being useful for me to see someone at ENT, but when she read Dr S’s letter she said we should maybe leave that for now so as not to confuse matters.
Could you tell me a bit about the tests you’re talking about? Did you have them and feel they were of any use? It’s really great to hear that you’ve progressed so far in being able to get back to work etc. I have probably delayed my own progress by resisting meds, but, as I said, there were a few reasons why I did that, although at this point those seem less important than just getting properly well again.


#11

Hello Kat

My Gp was utterly useless so I saw a Dr Gerald Brookes at the Harley Street Ent clinic .
He was the Emeritus consultant Neuro otologist at Queens Square until 2010.
He told me to make a definitive diagnosis I would need certain tests done which in the private sector would cost £4000.
He wrote to my gp with his recommendations which my gp did not like and resisted referring me .I moved heaven and earth to finally get referred , first they sent me to a local ent which I told them was a waste of time but they didn’t listen, but to be fair the Ent referred me straight on to the Royal National Throat Nose and Ear hospital where I saw a Dr Nandi.
I had these tests done I can’t remember if it’s VNG or ENG but I was put in a darkened room and strapped into a seat with a pair of goggles similar to VR Goggles first there was a red dot I had to follow with my eyes without moving my head then there was a strobing skyline and I had to look straight ahead after that the room went completely black and the chair starting spinning one way then the other.
Next was the caloric test where you had the goggles on but now lying down looking straight up while they jetted warm water Into my ears.
I also had pure tone audiometery which is like multiple hearing tests and I had another thing similar but with a clicking noise.
I then saw the Doctor who then diagnosed me .
However I wasn’t happy with his treatment plan which I thought wasn’t very proactive or aggressive and I wasn’t improving so I went to see Dr SURENTHIRAN privately and he took me on the NHS and I saw him again in March and that’s me about up to date.


#12

God, Reggie…those tests sound like torture…I’m not sure if those would have yielded anything positive for me or sent me completely over the edge…spinning in a black room? Water in my ears??! What was the conclusion re your results from all of that?
Like a number of people posting here, I do feel a link with the ears (I’d had a bad ear infection at one point before all this started, but probably at least a year before it hit, so I don’t know if that could have been a trigger in any way). I get a feeling of fullness in my ears, which I think we’ve mentioned already…it’s like a build up of pressure rather than feeling like it’s liquid or anything. As I said in another thread that I started today, I’ve also experienced songs sounding out of tune occasionally if I’m having a really bad day of symptoms. I don’t know if that’s something other people with MAV get or not (I’ve not noticed any hearing loss as such). When I’m lying down and getting the spinning, often it seems like it’s emanating from my ears, but at the same I’ve also felt it in my stomach (as if I was on a swing or rollercoaster) and also more generally in my head, sometimes as a feeling of falling or, possibly most horrible at all, a jolt of sudden motion.
Part of me would quite like to see what an ENT specialist (a good one :wink:) would say to all my symptoms. That said, it takes quite a lot for me to put all of my faith in one doctor (I’m one of those people who questions and researches everything) but Dr S has seemed so confident in his diagnosis that I’m taking it that it is correct and going from there. Although no one in my real life really understands or can empathise with what I’m experiencing, there seems to be quite a lot of overlap between my symptoms and those of others (yourself included) here. As Dr S said though, everyone is different and this can present in a number of different ways.


#13

Hello Kat

As I understand it the point of most of these tests was to measure the response of my eyes hence the goggles which were linked to a computer.
This in turn led them to rule out menieres and other inner ear related disorders because someone I know who had vestibular neuritis puked up everywhere when they had the caloric test and yet apart from feeling a bit weird the warm water didn’t trouble me.
I was told I had a slight disbalance but within the normal range and the fact that I get slight visual disturbances clinched it for them that I had vestibular migraine.
I have only ever had four bouts of acute rotational vertigo where everything was spinning and none since March 2016.
For me everything stems from my neck or the base of my skull which makes me believe the diagnosis is right. I do suffer from mild tinnitus at times and I do get fullness in my ear but as I had this explained to me the migraines interfere with the signals sent around your brain including to the vestibular system
and when I had my worst attack which was on Good Friday 2016 my head was absolutely throbbing.
Have you been sent for Cognitive behavioural therapy? I had six sessions at the Royal National Throat Nose and Ear hospital in the audio vestibular department so the therapist has an understanding of what your going through.
Talking to her helped a little it teaches you not to panic too much when something feels a bit off.
I feel everything was brought on by stress I had a particularly stressful time when moving house and I am by nature quite highly strung.
I’d always take on too much and lived my life at a hundred miles an hour and something just snapped.
To make things more stressful while I was going through the worst of it and in a very dark place my wife was pregnant with our first child, then my wife’s mother died when she was seven months pregnant which I think has hampered my recovery a bit.


#14

Thank you so much for sharing all of that, Reggie. I think it’s good you got to eliminate the inner ear disorders, whereas I still have people asking me if it could be that (because everyone knows someone who knows someone who…etc) and I probably would have liked to have that entirely ruled out.
My ‘vertigo’ always feels like it’s inside me rather than that the world is spinning. When I’m having a bad day, things can feel on different levels though…like my depth perception and spatial awareness can go off. So walking across the kitchen can feel like I’m on a rocking boat, or I’ll be sitting on the sofa and it will feel like it’s dipping in the middle when I know it isn’t.
I feel a link to my neck and the base of my head too. Looking back, there were probably warning signs that something was going to hit. I’d been getting a lot of headaches and pain in my neck and shoulders etc which I put down to stress. Like you, I had had a lot of stress before all this too, including a relocation which I regretted and relationship problems because of that etc. I knew I felt awful but didn’t know what to do…and then things got worse obviously…
I’m on a waiting list for CBT atm. I do think I need it beause of the stress and anxiety and yes, panic, that can come from this condition. It’s so alienating too - people think i’m OK because I kind of look OK (I really don’t…I look shattered) and because they can’t see anything wrong and because Im’ trying to keep things ticking over, they’ve no idea of the symptoms I deal with every single day (because they are always there, even on a better day). That’s why this forum is so helpful as at least I know there are other people feelig similarly, even though I wouldn’t wish it on anyone and really it’s a club none of us want to belong to,


#15

Hmmmm … I think the whole ‘story’ about migraine being the cause is a load of baloney. It’s called ‘MAV’ because of the constellation of symptoms. Migraine is secondary imho, a reaction to an underlying sensory issue and the meds help by reducing the sensor imbalance and or inhibit the migraine mechanism. Yes of course diet helps because it helps prevent the neurological issues, but I believe these are secondary. The diet may also play a role in minimising inner ear pressure (Hydrops). The idea that the migraine ‘simulates’ all the same symptoms as menieres (except profound hearing loss) seems very far fetched!

We can’t know for sure because the technology simply isn’t there yet. Its ridiculous they can’t even tell us what a vertigo attack is! My bet it’s exactly the same mechanism as in Menieres but in Menieres something additional is happening. Some recent research suggests a genetic weakness is the cause of the progressive hearing loss which explains why Hydrops is more common than profound hearing loss.

However Japan has just developed a test for perilymph fluid and I think we could be on the cusp of a revolution. I expect they will find perilymph in the middle ear space after vertigo attacks (and for those with a PLF). This makes complete logical sense: surely the ear would have evolved a way to expel surplus pressure via the inner ear windows rather than self destruct ? After all it has a perfect waste pipe - the eustachian tube allows it to be drained away. Also they are the only membrane where one side is low pressure air!! This seems too compelling for me. This also might explain some feelings of fullness: perhaps if the inner ear windows break regularly enough dried blood can temporarily block the eustachian and allow the perilymph to build up between vertigo attacks. And one more thing: the ‘weakness by design’ of the inner ear windows may explain why they are easy to injure with external pressure or trauma (violent coughing, sneezing, barotrauma, you name it) and probably exolains the existence of PLF.

In closing I think MAV will turn out to be a form of Hydrops but one where profound hearing loss is not a feature and probably for the simple reason that the inner ear windows have generally evolved to be weaker than the labyrinth membranes to minimise damage. Unfortunately they are still strong enough to allow pressure to build up and cause tinnitus and vestibular issues. Thus MAV is probably about some issue with pressure regulation in the ear. If this settles down that might explain why many get remission.


#16

Hello Kat

I think that with regards to everyone knows someone who etc…
There is a lot of misinformation and hearsay.
In my experience your average gp doesn’t have a clue.
My gp diagnosed me with Labyrinthitis without getting out of his seat and did no physical examination whatsoever. Before that he said it was high blood pressure and previous to that low blood pressure so what chance have you got ?
I know it easier said than done because I still have dark days where I feel quite depressed but you have to try and stay as positive as you can don’t start feeling like a victim because that’s when your on a slippery slope . I try to find the success stories rather than getting bogged down with all the negativity.
Have you tried meditation? I know it sounds a bit hippyish but try Headspace you download the app and get a free ten day trial.
One day I had a stinking cold and was feeling a bit wobbly I needed to go out and do some shopping but I really didn’t feel up to it and I
went into a quiet room and I done the eleven and a half minute session which made me feel relaxed enough to get on with my day .
Do you avoid going out and social situations ?Because again this is only my opinion but in my experience now is when you need to be among people most don’t isolate yourself!


#17

Hey Reggie,
Yeah, I’ve definitely been avoiding social situations at times. I’ve been out for something to eat and found that having so much going on around me and the unfamiliar environment made me feel like I was on different levels or couldn’t quite get my bearings and it was unsettling. A couple of times in the very beginning, even reading the menu was difficult because of the dizziness that would cause, so that rather gets things off to a bad start! Things are not just so bad now though and I’ve enjoyed eating out at times again, although I’m probably never as carefree as I used to be.
I don’t even venture into pubs as I’d find not being able to join friends in having a drink annoying. It wasn’t that I was a big drinker before, but I’d find it irritating to sip soft drinks all night and watch people get drunk, so I opt out. It just serves as another reminder that I’m different now and I do find that depressing. Your diet sounds super healthy…do you, or did you, drink alcohol before this hit? I hate having choices taken away from me and sometimes feel this is changing me into a different kind of person so I don’t feel like me anymore.
A friend of mind recommended Headspace but I hadn’t checked it out yet. Now you’ve mentioned it again, and found it useful, I’ll certainly give it a try.


#18

Hello Kat

I won’t lie to you I come from a generation that associates alcohol with fun so much so that when people told me they had been out.
I would ask them if they had a drink and when they told me they hadn’t I would ask them how they could enjoy themselves without getting well oiled.
I’ve only had two beers since August and I won’t lie I really miss it.
On the subject of diet don’t be fooled It’s not that healthy I do permit myself fish and chips, but I do probably five days a week eat food that’s completely homemade lot’s of soups and stews.
Also another problem is I have piled on the weight because I used to be a gym rat but the doctors told me to leave it until signs of getting better so that’s been two years now without really exercising although last summer I was walking ten miles a day or so and lost a couple of stone but since my daughter was born and the pregabalin it’s difficult to find the time for yourself and find the energy.
I’ve just gone up to 225mg a day and I’m hoping that this dose is going to be the one to help me towards a full recovery.
I try my best to stay as close to what used to be normal as possible although having my first child at 45 normal has changed a bit.
I know what you mean though I went to a concert last October and I was looking at everyone having a drink on a Saturday night enjoying themselves and I was thinking how lucky they were not to be afflicted but my therapist told me that kind of thinking was counterproductive.
I suppose if you really want to recover you have to believe it and I won’t lie to you there does seem to be some people on this forum who are quite negative and when you read their posts it’s quite depressing.


#19

Hi All,
I’m new to the message boards-- not even sure how to navigate them. I read all your posts, and was intrigued to read that others have the same awful sensation when lying down. Some days I feel like I’m going crazy, and feel very alone in this struggle. Like many, it started with BPPV, which became more frequent. Then, at some point my life took a drastic turn, and I felt dizzy and “off” all the time. I’ve been to many doctors, all coming to the same conclusion-- MAV. I too had over two hours of testing–rotational chair in the dark (torture); hot and cold water in each ear (produced horrible spinning); nerve testing; hearing test; etc., etc. I haven’t found a medication that works; I’ve tried too many to list. The side effects are worse than the everyday MAV. I am better than I was a year ago–thank god–but want to feel normal again. I mourn the loss of my former self. I live in the U.S., I’m not sure if we have Pregabalin, but will look into it.
Thanks for listening. Sadly, I could go on and on.


#20

Hello

Pregabalin is called Lyrics in the States