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Frequency of vestibular migraine

Hi there, I am just wondering if anyone else is having vestibular migraines very frequently. I have one every 3 days sometimes every other day. Sometimes, by the time I have recovered from one I go right into another one. These are becoming quite unbearable. It seems as though I have gone 3 months with maybe 2 good days total. My migraines manifest as a feeling like I am going to faint, nausea, and non-spinning dizziness.

I’m not going to lie, I am having a really hard time coping with the relentlessness of these. I am on my 4th week of sertraline and I felt pretty good the second week then increased my dosage and I feel the worst I have ever felt now.

Does anyone have any advice as far as coping mechanisms or perhaps experience with sertraline? Thanks in advance.

I can’t speak to Sertaline, though I can say you can generally expect symptoms to be worse in the first two weeks of increasing a dosage of any MAV med. A good rule here is to increase low and slow. It takes weeks or months to get to an effective dose and then a good while longer to be able to judge the effects. Sometimes it’s worth going up. Others it worth ramping slowly back down and trying something else. MAVericks tend to be very med sensitive so the schedules pushed by the neurologist or drug companies are often too aggressive for us.

Episode frequency varies. Some of us are episodic, like you seem to be. Others are 24/7 and have been for years. It’s usually a mark of progress to go from chronic back down to episodic or from full on vestibular migraines down to classic (non-dizzy all the time) migraines. In the early weeks, months, sometimes years those good days are elusive. They get more frequent and much better overall as you slowly hone in on the medication or lifestyle changes that work for you. I’ve personally run the gamut of meds and it took a couple of years to settle in on a treatment protocol that gave me decent quality of life. It takes a lot of patience and fortitude.

I’d suggest a keyword search on any and all issues you can think of here. The wikis and posts are a vast wealth of information and experience.

You’l get there. Educate yourself as much as you can, experiment and you’ll find your way back to a better place.

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Thanks for the reply. I should add, I am 24/7 with constant symptoms. However, they get really intense every 3 days, like want to go to the ER intense. I am trying to stick it out with the sertraline for now. The side effects are amplifying everything. I am a little discouraged that if I can’t even handle the side effects from this, how will ever try something like nort.
I will continue to read through the forums here to gain as much knowledge as I can. Thanks again!

Yup, I had that for a phase. I stopped it with Amitriptyline. The 24/7 stuff continued, but I didn’t get the intense crazy migraines any more.

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dang, how long did that phase last for you? Its been 3 months strong for me.

It was so long ago hard to recall, but the difference was dramatic. Have you tried Amitriptyline? If you aren’t getting the reduction in migraines like you hoped, discuss changing the med I suggest.

I am taking sertraline right now. I do have Nortriptyline sitting in my cupboard. I was too chicken to take it. I had taken an SSRI in the past and so I knew what to expect. The nort scared me a lot. My symptoms of VM are so severe, I am barely maintaining consciousness when they occur, that I didn’t know if I could handle nort. I stay at home with my daughter and do not have a lot of wiggle room for severe side effects. Although, if the sertraline does not work, I will no doubt have to try to the nort.

Of those two drugs, Nort is the bunny rabbit, being ‘just’ a tricyclic.

If Nort doesn’t work, then try Amitriptyline, it’s the stronger of the two (but again, Ami is a lot easier to deal with than an SSRI).

You definitely want to get out of this phase! Good luck. I’ve been there and it’s awful. My heart goes out to you.

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Hi @cate

Sorry to hear you are suffering. I’m very similar to you in that I have 24/7 symptoms which have been ongoing for almost 16 months. Whilst that sounds bad, I have made some progress since being really poorly in the Autumn of 2018. I have been doing a lot to monitor my triggers and from that, I can tell my really bad flare ups appear to be from fluctuating hormones, barometic pressure, allergies, stress and - to a lesser extent - diet.

I have installed the Migraine Buddy app on my phone and that is a really useful way of recording attacks and getting an idea of what might be causing them. In a typical month, I seem to have a pattern of between 7-10 days of baseline 24/7 symptoms where I can function at around 80%. For the remainder of the month, my symptoms really ramp up and I’m then in a pattern of symptoms lasting on average for 19 hours. I get a short break and then another comes along for about the same time. When this happens, I feel I only really function at about 50% due to the head pressure, awful bouncing floor feeling and mini vertigo spins (made worse by visual stimuli). For me, the only real relief I get is when I’m travelling in a car, bus, train, etc. Being in motion seems to help.

Med wise, I’m quite sensitive so I’m cautiously on 10mg Amitriptyline which I take daily at night. I believe it gives me some relief and a better night’s sleep for sure. If I happen to get pain with my migraine (and that’s rare) then I take paracetamol and that definitely helps and occasionally lessens the spinning sensation. I was trialling acupuncture before the Covid-19 pandemic took off and I believe that was lessening the head pressure as well as the terrible anxiety I’ve developed from having this condition. I’ve found that reducing the head pressure reduces the vertigo sensations. I’m hoping to resume acupuncture once it’s safe to do so.

I hope this helps you in some way and that you find some relief for your symptoms soon. This is a great site and has some wonderful tips to help you cope. It has been a lifesaver for me.

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Thank you for the reply. I had seen that app before. I think I will give it a try! Your daily dealings with this seem to be the same as mine as far as frequency. Tbh if I could just get rid of the feeling like I am going to faint sensation I know I could function way better. I have even questioned whether or not this is POTS or VM because of that particular sensation. Thanks for the advice!

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People reporting POTS comorbidity on here is quite common. There’s likely to be some kind of relationship between the two conditions I expect.

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I am in exactly your position. Have been battling this for over 18 months now. Things are slowly getting a little better. Always get increased symptoms for a week or two going up or coming off medications. Hope you get success with your preventive.

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Hi I’m in your position to and started nortriptyline and have been on it 2 months on 10 mg then up to 20 now on 25 it has helped me as I was bedbound now I’m up and about still get dizzy but at the start I was fainting spinning non stop for seven months my anxiety was through the roof I was falling over with no balance and it frightened the hell out of me I had really bad stress I find this medication is helping me I’m not better right away but I’m better then I was so give it a try I’m trying to go up slowly but the going faint really scared me as it would even happen lying down or stood up I saw ent who said they think vestibular migraines and to try medication for 3 months and go to 40 mg which I’m trying but get panicked over the effects coz I’m not sure if it’s the tablets or the migraine vertigo iv tried finding all about it for help there some great forums like health unlocked

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I have it chronically, so my symptoms are 24/7. It is hard to cope. But I would say around the 1 year mark for me I started to accept my situation and try to focus on what I can do. The thing about vestibular migraine is that you will get better over time and you will learn to live with it, trust me. I do not have experience with ssri, but finding a good neurologist or nuerotologist is good. They will help you on your path to recovery. I have not tried sertrline. I take 1.5 mg of klonopin daily and that has given me some parts of my life back. The klonopin helps with the dizziness, but my severe agoraphobia and panic disorder is far less now. I can go out and do things because of this drug. Now, I do not feel anywhere close to normal, but I do not get panic attacks anymore. And I can leave my house like a normal being.

Good luck!

Mike

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How was going on the nortriptyline initially? Were the side effects pretty bad? My problem is I have a 4 year old and I am a stay at home mom so my biggest concern is the nort making everything worse, even if its for 2 weeks etc. I can’t just be fainting or falling asleep with my child in the home. I couldn’t even titrate up to 25 mg of sertraline bc the side effects were so bad.