Hi I’m Sanya I’m new here just joined today and really looking for some support. I’m really struggling with this condition it’s been just over a year. Does anyone else feel like they will go crazy? When my dizziness hits my fight/flight is crazy never experienced anything like this before 
I just want my life back, currently on pizotifen 4 weeks no improvement
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A very warm welcome to the forum, @Sanya! 
Everyone here is really friendly and eager to help. I’m sorry you’ve had such a difficult year—you don’t have to face it alone, and you’re welcome to share how you’re feeling, ask questions, or simply have a vent.
If you haven’t already, please take a little time to read these:
Welcome Topic — an introduction to the community and helpful resources:
Posting guidelines — to help you get started:
There’s no pressure to take everything in at once. We’re glad you found us, even though we wish dizziness hadn’t been the reason! 
Thank you so much, really grateful to be here. My main question would be what have others found the medication which has helped the most to get this under control and has anyone managed to drive with this? I’m really upset about not being able to drive
@Sanya, losing the freedom to drive is genuinely upsetting—it’s not “just” driving, it’s your independence. Yes, people here have reported getting back to driving after their symptoms improved, although everyone’s recovery is different.
On medication: there isn’t one reliable “best” medicine for everyone, and forum experiences can’t tell us which will suit you. A few examples I found:
- Pizotifen: @Lorri reported less constant dizziness and starting to drive again around five weeks into treatment, alongside vestibular rehabilitation. In a later update, they described improvement as gradual over several months.
Starting Pizotifen - #4 by Lorri - Pizotifen plus propranolol: @beechleaf described much less false movement and sensitivity to motion, and being able to manage most everyday activities again.
Dr Ron Granot - my appt today - #40 by beechleaf - Gabapentin: @liv85 said it helped them work and function with far less discomfort, after trying other medicines. That’s an individual success story, not evidence that it’s the best option overall.
Starting Pizotifen - #2 by liv85
Four weeks without improvement doesn’t necessarily mean pizotifen has failed, particularly if you’re still gradually increasing it. Preventive medicines often need several weeks to months, including time at a suitable tolerated dose. Ask your prescriber what counts as a fair trial for you, and don’t change or stop it on your own.
For driving, please don’t push through dizziness or use a drive to test whether you’re better. Avoid driving if dizziness, visual disturbance, disorientation, unpredictable attacks or medication-related sleepiness could affect your control. Discuss returning safely with your clinician and check your local licensing rules. Someone else’s return at five weeks isn’t a deadline for you—but it is a reason for hope.
What dose of pizotifen are you taking, and have you been on that dose for the whole four weeks?
Thank you so much that’s really helpful. I’ve been on the full 3 a day dose 0.5mg each for two weeks now, so there’s still hope even though there’s no improvement now? The other thing which bothers me is my hunger is very strong, I’ve been trying to control it bug I’m constantly hungry after starting pizotifen and after increasing the dose its worse, I had so much food after my dinner today that I nearly threw up but I kept still feeling hungry its crazy! How long do you think I should given pizotifen before requesting a change?
@Sanya, yes—there’s still a chance it could help. Two weeks at your prescribed target dose of 1.5 mg daily is generally too soon to declare it unsuccessful. But the hunger you describe sounds really distressing, and you don’t have to endure intolerable side effects just to complete a trial.
How long to give it? Migraine preventives are commonly assessed after around 8–12 weeks at a suitable, tolerated dose, although your prescriber may choose a different timeframe for pizotifen. That isn’t a requirement to keep taking it regardless of side effects.
Because you’re eating to the point of nearly vomiting yet still feeling hungry, contact your prescriber this week rather than waiting another couple of months. Explain how much the hunger worsened after the increase. They can help decide whether to continue, adjust the treatment or switch. Don’t increase, reduce or stop it abruptly without their guidance.
Increased appetite and weight gain are recognised pizotifen side effects—not a failure of willpower. They ease for some people, but not everyone:
- @Lorri reported that the hunger gradually settled after about a month, with improvement in dizziness developing over several months:
Starting Pizotifen - #14 by Lorri - @Jojo65 described appetite that remained difficult to control:
https://mvertigo.org/t/slug/16253/46
Those are individual experiences, not a prediction of what will happen for you.
While waiting for advice, regular meals and planned snacks containing protein and fibre may help; avoid skipping meals to “make up” for eating more. If you feel physically overfull or nauseated, pause rather than trying to satisfy the hunger by continuing to eat.
My bottom line: it’s early to judge the benefit, but it’s not too early to request a medication review. You could say: “I’ve had two weeks at 1.5 mg with no improvement yet, and the appetite increase is making me eat until I feel sick. What trial length and side-effect plan do you recommend?”
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Hi Sanya. I’m sorry you’re suffering but I’m glad you found us.
Like most things, it will be a try and see what medications/therapies work best for you. The only thing that helped with my vertigo was taking Amitriptyline daily. I still do but sometimes it can break through, but thankfully not as often.
I read further down and saw that you can’t currently drive. I too had that issue. I couldn’t even walk straight. Physical therapy can be an option potentially to get you back to a level focal point.
I will say when I was really bad, I drank a lot, and I mean, A LOT of water. It seemed to be the only thing to help calm down the vertigo when my meds weren’t working. I take ginger chews as well. Those seem to help as well. I know health issues increase anxiety and I’m right there with you. I wish I had better advice for that aspect of it.
Feel better soon!
Renee
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Thank you so much this is so helpful to know. I will definitely discuss it with my neurologist but I’m so glad to have found this community especially with so many people telling me maybe it’s just anxiety! It’s been so awful living with this
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Hi Renee, thank you so much for sharing your experience. I have been doing physical therapy for at least 8 months now. Which dose of amitriptaline are you taking if you don’t mind me asking? I could only tolerate 10mg but it helped with my motion dizziness I wish I could have tolerated more as I feel it would have helped a lot but unfortunately I had severe palpitations when I tried to increase just to 15mg. I’m still on the 10mg for now but it’s not enough hence had to trial another medication
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Welcome. There are many different drugs, therapies and strategies for managing VM and unfortunately it’s a trial-and-error situation to figure out what works. For me, topiramate (an anti-seizure medication) worked best, but I’ve tried many others that didn’t work. I’ve also done vestibular therapy, vision therapy and made lifestyle changes. Many people have some success with supplements and dietary changes. It’s so upsetting to keep trying new meds, etc. and getting nowhere but don’t give up!
Here are two websites I highly recommend. First is VEDA – a non-profit organization that advocates for people with vestibular disorders. There is a wealth of information on their website. Next is Dr. Timothy Hains Dizziness and Balance website. He is probably the top researcher and practitioner in the US and is highly respected. In particular his page on treatments for VM outlines the medications he prescribes (scroll down on the page). I hope you might find this helpful as you move forward.
There are other good resources available for diets, supplements, etc. so don’t hesitate to come back here with your questions. Many of us have been through it just like you, and have found our way to at least partial stability. You will too!
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Hello!
I started with the same 10 mg dose of Amitriptyline and have been on a 25 mg daily dose for 6 years now. I’m sorry it didn’t work for you. Medication tolerances can be difficult. I don’t tolerate too many myself. My body has gotten very sensitive over the past 15 years.
I’m glad to see you’re doing the physical therapy! I should probably do that but my insurance doesn’t cover it so it’s too expensive for me.
Have you heard about hyperbaric oxygen therapy? That’s more the migraine route as a supplemental therapy but it’s worth looking into. I may even do the same honestly.
Keep us posted!
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Hi Sanya, welcome to the forum. Really sorry to hear you’re struggling with VM, it can be brutal and takes time to go into remission, but it’s possible.
The main thing I’d say - what I learned in my experience, is that the medications do work but they take a long time. To assess if they work I would say 6 months or so on the highest dose the consultant prescribed for you. I went through the process of reaching remission with medication before, on Nortriptyline, Pizotifen and Aimovig combined. It took so long to start seeing improvement but it’s worth staying on the same med if you can tolerate it as it’s the accumulated time on a med that helps to raise your migraine threshold.
The other thing I learned is that rather than changing meds, it’s worth adding in a second preventative if you’re not getting enough relief, I imagine this will be something your consultant will offer you.
You can read my diary of remission (“On this boat diary”) where you can follow the whole process.
Hope you get some relief soon!
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Hi Sanya, I am sorry that you are going through this - you have found a good place for support.
I was prescribed Pizotifen - I went up to taking it 4 times a day before I could start weaning myself off it. I was on it for about 18 months and it took about 3 months before I noticed any improvement. I was off work for 5 months and didn’t drive at all during that period - there was no way that I could even consider getting behind the wheel. Pizotifen worked for me although I have been left with 24/7 tinnitus and I still get head and ear pressure especially when I am tired or there is a change in air pressure. I was also very hungry when I took P. and put on weight during the 18 months I was on it - I think it didn’t help that moving around, or doing any exercise was difficult.
I think you should give Pizotifen a bit longer than the month, but make sure you talk to your neuro about any side effects - e.g. being hungry all the time as he/she might switch you to something else. 
Hi Sanya. Sorry you are dealing with this horrible condition. One of the worst symptoms i had was anxiety. It’s a direct symptom of many vestibular conditions, which is understandable when your body is getting mixed messages and feels like it is constantly moving. I found the anxiety very difficult to deal with, and would odlften have a really intense feeling of wanting to escape but of course you can’t escape your own body lol. When the anxiety hits, try to remind yourself that this condition isn’t dangerous and that you will, in time, eventually feel better with the right treatment. Listen to calming music or do something relaxing when your anxiety is at its worst. Try to distract your brain from thinking about how you feel.
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Thank you so much, did you ever feel like you were going to go crazy or lose your mind. I started feeling like this since I started getting these episodes and it’s so scary and had to be reassured it’s just anxiety
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