Hello everyone I thought I’d introduce myself properly and say how glad I am that I found this forum!
I’m Hayley a 33 year old Midwife, I live in Kent and fortunate to work at my local NHS trust- Medway Hospital.
I was seen by Dr Surenthiran purely by coincidence, on 7th Nov 2019 and diagnosed with migraine variant balance disorder.
I was a little shocked as I went into the appointment thinking I would be told that all my systems relate to a heart condition I have - POTs (postural orthorstatic tachycardia syndrome) in short when I stand blood pools in my legs and my heart rate increases so compensate sometimes my resting heart rate can be 140-160bpm.
For this reason I find it very hard to tolerate exercise but have recently bought a mini bike that I can lay on the couch and use.
Dr Surenthiran commenced Pizotifen for me and I started at 0.5mg
Increased on 14th Nov to 1g
Increased again to 1.5g on 21st Nov which is where he has told me to remain.
At first I thought I had responded well to the treatment as the fogginess and ear fullness had subsided, however it came back with a vengeance and I am now in the middle of a horrible episode of vertigo, nausea, and constant ear pressure.
Side effects for me have been drowsiness, slow gut, and weight gain, already I have gained 7lb since starting the meds yet I have honestly never eaten so healthily following Dr S MAV diet.
I managed to speak to Dr S’ secretary today Yasmin, who took all my details and I requested to change medication. Initially Dr S had suggested Gabapentin if I don’t tolerate the side effects of Pizotifen however I am wondering if topiramte may be better for me, as someone who is already overweight and suffer with Hyperhidrosis (increased sweating) I feel it could benefit me in more ways than one. However yasmin advises she would discuss with Dr S and get back to me in the next couple of days. - fingers crossed
So that’s me, if anyone has any tips/ advice I’d be grateful as it’s a minefield atm.
Don’t take Pizotifen myself but what you are experiencing is typical of many of the drugs used. The weight gain is more specific to Pizotifen although other drugs are very similar. Pizotifen is notorious for weight gain. All antidepressants cause increase in symptoms on start up and each and every increase. As an example I was once told to take Citalopram and told to expect to feel worse for at least three weeks before I’d start to feel better. Best way to minimise side effects is to increase slow and low. If you only started on Pizotifen on 7th November and are already taking 1.5mg you are probably increasing far too quickly. Best to start on 0.5mg for several weeks or until symptoms settle then go up to 1.00mg and repeat. Might be best to drop back one level until symptoms settle now. Suggest you use Search facility to check out any queries you have. @sputnik2 or @janb are two members here who have personal experience of Pizotifen. You could PM them if neither pick up on your post over the week-end. Pizotifen can help you. It’s the only oral preventative actually designed for migraine. All the preventatives produce side effects and most MAVers are highly med sensitive anyway so don’t imagine you’ve drawn the short straw. Unfortunately such side effects are typical for many MAV patients. Helen http://www.nhsgrampian.org/nhsgrampian/GJF_general_new.jsp;jsessionid=EC93B5680DCEC97447BC36F0D7A36B5C?pContentID=4492&p_applic=CCC&pElementID=578&pMenuID=464&p_service=Content.show&
Dr S gave me the increment titration, I’ve just followed his advice.
The hard thing is the vertigo and ear symptoms have gone, which is amazing, I just can’t handle the weight gain and drowsiness, I’m not someone that can afford to put on weight and I have struggled to loose it for years.
I’d really like to know if anyone stopped pizotifen for these reasons and how they were if they changed to Gabapentin.
Dr S did say if the side effects are troublesome he will change me to Gabapentin.
These are the only two options he gave me, I have a heart condition so maybe why he didn’t recommend propranolol
Hi, I take pizotifen under Dr S. I’ve just gone up to 4mg but it has taken me just over a year to build up to that. Have you to stick on 3 tabs a day or are you going up further? I was told after 1mg to stick with each increment (1 tablet increase) for at least 8 to 12 weeks so my body could get used to the dose and see if that was teh therapeutic dose for me. Do you take all 3 tablets at night? If you split the dose to two at night and one in the morning it might not make you so drowsy at night.
As to the slow gut, it is an issue but I had a worse time on that front a low dose of amitriptyline. I’m taking magnesium and b2 tablets (as advised by Dr S) and that has helped my gut motility somewhat. I’ve gone up a dress size from 12/14 to a sixteen but I’ve decided to live with that. You won’t be on the pills for ever.
It’s pretty early days for you on pizotifen. Two weeks and already up to 3 tablets, well done, Perhaps if you give it a week of two things will settle. It took me about a week each time I increased before the drowsiness and increased dizziness settled. A poster here Gidablu has taken a combo of pizotifen and gabapentin:
If you search there will be lots of threads about gabapentin.
Several years ago I took the dose of pizotifen you are on straight away (under my GP for migraine headaches) and it really knocked me out. I slept through really loud alarms and missed a school pickup so gave up after a week. So I do understand not wanting to be like a zombie around children) I wish I had stuck it out a bit. I’ve not been too drowsy this time round as I’ve crawled up on dosage like a snail.
If you don’t like the idea of taking gabapentin, I’m sure Dr S would prescribe something else. (He originally prescribed Pregablin for me, suggested a swap to candesartan but after a chat I somehow and still can’t work out how, I ended up on pizotifen).
Yes loads of people quit it due to weight gain. Ask @jojo65, she was getting up in the night on a food forage in the fridge. Not wishing to be bearer of bad news but you could well find Gabapentin also very sedating and nearly all the other chosen drugs cause weight gain too. You can easily Google any one and read the side effects list before embarking. Bear in mind also having such a condition inevitably means you will be too active for a while which doesn’t help with weight gain, BP and other things. The human body is designed to be moving. Most people accept some weight gain if it gives them control over their MSV symptoms and hope to lose it later when more stable. . Much obviously depends on how ill you are in the first place and your individual priorities in life. All a question of ‘swings n roundabouts’ as they say. Some people manage without taking prescription medication at all. Different people react very differently to different drugs. Few experience no side effects. Its much a question of tolerability. All trial n error I’m afraid.
Btw just as conversation I wouldn’t assume Dr S failed to prescribe Propranolol for you because of your heart condition. From all I’ve read it isn’t a drug he prescribes. Every consultant has their favourites and their own reasons behind them no doubt,
Sounds like it could really be the drug for you then really if you can stick with it, Most people on here would be over the moon with such a quick and comprehensive response. People struggle for years to obtain such success levels. As you’ve only just come on board I doubt you’ve yet had time to appreciate how chronic, persistent and difficult to get under control MAV really is. It is after all a neurological condition. It was your consultant I believe who first referred to it as a ‘migraine variant balance disorder’.
He told me to increase each week so I started T 0.5g, then increased to 1g on 14th Nov then 1.5g on 21st Nov. He hasn’t said to increase any further but advised to see my GP if the side effects are too much and he will send him instructions on how to change me onto Gabapentin.
I do feel better but need to not be so drowsy overnight. Dr S advised me to take all 3 at night as I am a midwife and need to be alert for my 12 hour shifts. (When I go back to work!)
I’m not against the idea of Gabapentin I just dont Want to swap out one problem for another.
You’re right, from reading the forums I can see I am very lucky to have had such a quick response with relatively minor side effects.
I just worry About my 1 year old at night as he still wakes every 2-3 hours and I’m near useless. I just about manage to get to his room.
The weight is also a big thing for me, not a question of vanity, I have struggled to control my weight for a number of years and started making progress when I was diagnosed with MVBD. To put on half a stone in 2 weeks when I have honestly eaten so healthy and been really strict with the diet is very disheartening.
I haven’t read a single story where people haven’t piled on the weight.
Gabapentin doesn’t seem to have the same effect from what I’ve read but as I say I don’t want to swap one problem for another when it’s working quite well
I was also diagnosed with Migraine Variant Balance Disorder by Dr S - welcome to the club!
I have been taking Pizotifen since June 2018 and the main side effect has been weight gain - I have put on about a stone but it has been worth it to stop feeling dizzy and all the other horrible effects. I built up to 3x 0.5 mg over three weeks too but my dosage was split over the day. I increased the dose , on Dr S’s instructions, to 4 X 0.5 mg per day taking 2 at night,but am now gradually reducing the dose and am down to X 2 per day.
The tiredness eventually goes as your body gets used to it - I can remember feeling excruciatingly tired for the first 3 months, but that passed.
I haven’t had the same issues with my gut - I am also doing Dr S’s 6 Cs diet which seems to have calmed things down. Plus I eat a lot more fruit - mainly apples and grapes which helps with gut sluggishness. Unfortunately not eating cheese, chocolate and red wine etc hasn’t seemed to control the weight gain , but perhaps I would have gained more weight if I wasn’t also on the diet.
I was off sick from work for 5 months and count myself lucky that I have manged to go back to work without having a relapse, so for me Pizotifen has given me my life back even though I still have constant tinnitus and occasional ear pressure.
I was told that I could switch to Gabapentin if I had side effects from Pizotifen, but the weight gain for me didn’t start until I increased the dosage to x 4 per day and by then it was obvious that Pizotifen was working. I am impressed that it is working for you already as it took a bit longer for me and I thought I was doing well!
It is very hard when you have a baby to look after as well as MVBD - no wonder you are exhausted if you are getting up 3-4 times per night.
Definitely check out Gabapentin, but if Pizotifen is working already you may not have to stay on it for too long. Plus your body will definitely adjust to it, although if your gut is unhappy and that doesn’t get better maybe Gabapentin will be worth considering. All these decisions to make at a time when our brain is very fragile!
I’m really lucky to have noticed a difference so quickly I appreciate that.
My appointment with Mr S was an appointment my GP arranged ‘just to tick a box so to speak
I have a condition called POTs (postural orthorstatic tachycardia syndrome) pots gives me An increased heart rate on standing, dizziness and syncope episodes and so for years I’ve had dizzy spells and fainting episodes, however the last 18 months or so I have had constant fullness in my ears and a fogginess in my head that I kept Insisting was not POTs related but no one would listen. My GP only arranged the appointment to shut me up I think.
I went in a little naive expecting Dr S to just say it’s down to POTs so it hit me like a ton of bricks to get yet another diagnosis. On top of that I’ve had another medication added in for my POTs only from the 28th October so everything is up in the air
I also have polycystic ovaries and endometriosis. So all these meds that play around with hormones make things even more difficult.
I have stuck to the diet so well, even not having a bday cake on Tuesday for my birthday!
I’ve been off work for 2 months now and I love my job so it’s really horrible but at the moment I just don’t feel I can cope with the pressure and the shifts.
I might give pizotifen another week or 2 and see if it settles the symptoms if not I may ask to try Gabapentin.
Selection of preventatives is virtually always at discretion of the prescribing consultant though later sometimes amended when GP refuses consent. Each consultant seems to favour a selected few chosen medications and rarely uses any others. From those I come across on here I cannot recall yours prescribing topiramate. It seems more popular in the US though one (UK) neurologist I saw loves to use it for MAV. It’s a favourite. However Many won’t prescribe Topiramate in cases where the possible resultant loss of cognitive function (loss of concentration, inability to find words etc) could prove a problem in a work environment.
OMG - you have certainly been through it! One of those would be enough of their own but to have all of them - no wonder you are struggling. Trying to do your job must be very difficult as you need to be feeling on top of things.
I was off sick for 5 months altogether - I am a careers adviser at university and my job involves 1-1 advice & guidance, lectures and a lot of computer work. I couldn’t concentrate on what I was doing and when I saw Dr S he signed me off - thank goodness. I have been back to work for over a year now and things are still okay for me, so hopefully they will be for you too.
Good idea to stay with Pizotifen for just a little longer to give it time to settle down but as you say, you can always try Gabapentin if necessary… I trust Dr S’s judgement so would definitely be guided by him. Fingers crossed! Jan
You’ll need a crystal ball to obtain an answer to that question I’m afraid. Only time will tell. There’s no definitive answer to either part of your question I’m afraid. Varies person to person. There was a young American man on here back along who had a positive response to Topiramate almost immediately and even started a new job (arranged pre-diagnosis) almost immediately. As we’ve heard nothing from him since I guess he’s doing fine. So if you tolerate the drug from takeoff you might be as lucky as he was. Helen
I took topiramate, Coffey. By the time I was finally diagnosed (many years without competent help) my symptoms were completely out of control. It took awhile for the drug to start working, which was what my doc told me to expect. My fall-to-the-ground vertigo stopped after about six weeks. Over many months the dizziness gradually became less intense and less frequent. It didn’t help with other symptoms but I was beyond grateful to be rid of the life-altering vertigo. For me there were side effects – mainly cognitive – but it was worth continuing because the drug was working. After 18 months I was able to titrate off the drug with no problems. I hope it works well for you – it was a lifesaver for me.
Thank you for your reply,
So I’ve been on topiramate for almost 3 weeks,
I started at 25mg once at night for 2 weeks and I am now on 25mg once in the morning and night for 4 weeks before increasing to 50mg twice a day, I’ve had a really bad relapse today, but I’m hoping it’s just an adjustment period and as I titrate the dose up the symptoms will be less. I returned to work
Last week just doing 2 short shifts a week but today had to leave early as I had tinnitus and vertigo so bad I could hardly stand.
Im not due back into work until Xmas day so hopefully I’ll be ok by then otherwise it’ll be another sickness mark against my name