The Migraine Associated Vertigo Community
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Hi! New here. Struggling with anxiety, feeling alone.

Hi everyone,

Let me introduce myself, my name is Nicky and I’m a 26 y/o female living in Australia. Ever since I was a child I’ve had relatively severe motion sickness (swings, cars, boats etc.), as well as the occasional ear infection.

In 2010, I fell ill for a week. I felt as though I had this uncomfortable and extremely frustrating shaking feeling in my head, like someone / something was shaking my brain. During this period I was unable to focus / concentrate and found that the shaking became too intense to deal with when I tried to look at my computer, phone, books or in mirrors…so I avoided doing these things for the full week. I went to the doctor and got told that I had a sinus infection. I had had a cold during the previous week, so I accepted this diagnosis.

Fast forward to 2017 and I’ve been having these same symptoms, lasting 1-2 weeks a few times a year and missing a decent amount of work. During this time I started to notice that the feelings I was getting didn’t seem to be associated with any other sinus symptoms whatsoever. My aunt had also passed away from brain cancer, and for this reason my mum decided to take me to hospital for an MRI, once I was there the doctor confirmed that he thought I had migraines and that “aspirin would do the trick”. However, I already knew from experience that no painkillers had any impact whatsoever on the migraines that I was getting as I wasn’t experiencing any pain and I also knew that my symptoms were dissimilar to everything I read online re: migraines. I still accepted because I knew that there could be atypical migraines, but had no idea where to find out any information about them and I couldn’t find anything that fit my symptoms online (I wasn’t good at describing them).

In 2018 everything began to change. My episodes were suddenly preceded by an aura! The symptoms were as follows -

  1. Blurred vision
  2. Heavy eyes
  3. Disassociation
  4. Mild tunnel vision
  5. Nausea
  6. Intense dizziness

After the aura finished the nausea and dizziness would continue, and the shaking feeling in my head would begin. These new and more intense episodes are lasting anywhere from 1 week to 2 months…and counting, as I’m currently still battling with one. I’m now been put on indefinite leave at work.

A few months ago I began seeing a neurologist who prescribed me propranolol (although I can’t take a high dose due to having low BP), sertraline (for mild situation depression) & ativan (such a life saver for anxiety / panic attacks but I’m careful not to use this too often). I know that I do not have the traditional vertigo (yet) associated with Vestibular Migraines but after finally typing in a keyword on Google that brought me to a vestibular migraine forum I felt as though my symptoms were more aligned with this condition then anything else I’d ever come across. My neurologist agreed and he sent me to a vestibular physio who confirmed that this was definitely the case.

My anxiety is through the roof because I’ve always tried to convince myself that this is something I’m just going to have to deal with for a couple of weeks a couple times a year, but now I feel like my quality of life could plummet. I joined this forum to try and find some relief but I’m finding myself getting extremely emotional reading everyone’s posts (have decided to stop reading for now). My heart goes out to all the people who are suffering daily. The last two months of my life have been horrific and reading some of the things that others have gone through brings me to tears.

This has been a long post, I know, I’m sorry haha. To finish things off I have a question -
Does anyone else have similar symptoms to me, or even different symptoms, that have NOT progressed into something chronic? I know that this forum is for chronic suffers but I don’t know if there is a forum for people who don’t suffer chronically…in fact, from what I’ve been reading on the internet it seems like everyone who gets vestibular migraines has them chronically, which is really scary thing to read but I’m not sure if it is accurate (hopefully not).

Thank you for reading.

Hi Nicky, welcome to the forum. I totally see where you’re coming from when you say reading the posts from the chronic sufferers makes you scared & cry. I’m the same, I still feel hugely triggered when I read about people having MAV for years. Although I’m unfortunately a chronic case now (11 months), I have two friends who have had on and off vestibular migraines and are doing really well, they’ve never progressed to chronic. I’d say get as educated as possible about migraine (I recommend “The Migraine Brain” book) and do what you can to change your lifestyle, avoid eating trigger foods, and take a preventative med. propranolol is a good one although for MAV there seem to be more success stories with antidepressants such as Amitriptyline and nortriptyline.
Although migraine is a neurological condition we can’t get rid of, there are things we can do to control it and live a better life with it.

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Hi, and very welcome. As you state if you have extreme health anxiety you are probably better off away from all health boards. However here we are a cheery supportive lot so we might prove the exception. There are very few forums around and none to my knowledge specifically for non chronic sufferers. We are not solely for ‘chronic sufferers’ at all. Don’t get that impression. We welcome all dizziness/vertigo sufferers irrespective of cause of current condition status, Originally created for ‘Vestibular Migraine’ folk by my understanding more than a decade ago we now have all sorts. And a few who still don’t know what they have and are therefore ‘unclassified’. Treatment’s often much the same as are many symptoms and support as much needed for all. Vertigo or indeed any firm of dizziness can be very debilitating and scary and is best understood by another sufferer. Indeed rarely understood by anybody who hasn’t actually experienced it first hand themselves IMHO.

As you have observed, and of course makes perfect sense, most of the people who hang on here have the condition chronically or other troubles ie med sensitivity that impedes them gaining sufficient improvement to no longer need support and move on with their lives. Some stay just to help others work their way through the MAV Maze. You will find a Success Story section on here. Check it out but alot of people with chronic MAV have passed through here and moved on I assure you. Then there must be many others around the World who have not joined us and posted, just ‘lurk’ and read, and all the others who don’t bother with computer forums and just get a script from their doctors and get on with life. Not everybody who gets vestibular migraines gets them chronically. Of course not. From my own experience and I am not a doctor, I’d say it’s much easier to get under control and less likely to turn chronic provided it is contained by medication whilst still at the episodic stage which you appear to be doing. All I can suggest is that if the low dose of Propranolol doesn’t contain your condition you should ask for another type of preventative in due course. As you are suffering from extreme anxiety it would seem sensible to enquire about an anti-depressant commonly used for migraine prevention such as Amitriptyline or Noritriptyline (well established in low dose for VM, or Venlafaxine a much more modern drug which is now being used. Going down that route may mean one drug would help both the MAV and the anxiety. Meanwhile best try to control the anxiety by accepting that you have this condition and it is likely to remain with you for some time. Perhaps try a migraine diet, restricting caffeine and making lifestyle changes which may help considerably. Anxiety will reduce as you begin to get the condition under control. All the best with your journey. Helen

Hi Nicky and welcome. I’m from Australia too (Ballarat). I’ve had some of the symptoms that you’ve had, including motion sickness from childhood.

I was never chronic exactly, but I have had periods where there have been a lot of acute attacks (three in one week in March this year). I’ve made a fair bit of progress over the last four years, so I would not expect to go into chronic phase. (Well, wobbly baby steps anyway.) Hopefully, you will make good progress too.

It can be daunting reading about other people’s experiences. If you’re not able to do this, then leave it for now. If there are particular topics you are interested in, you can just do a subject search. The forum is still available for you to share if you wish to and ask any questions.

Aspirin? Is he kidding? I’m glad that you’re with a neurologist now and getting more appropriate treatment. Good to have had the MRI too for peace of mind.

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Actually, and I hadn’t thought of it for years, Aspirin was the only drug that helped me when I had ‘sick headaches’ as a young girl. I haven’t experienced migraine headaches as an adult and I know there are many more modern remedies now available as abortives but, as a girl, it was always aspirin for me. Helen

Hi Helen,

Thank you for your detailed response!

I think I’ll continue to browse the forums when I’m in need of specific information e.g. medication advice, however, for now I’ll try to stay away from more detailed posts about people’s journeys just while I work on improving my own mental health :slight_smile:

I’ve actually been prescribed Venlafaxine in the past for anxiety, however, I was just going through a particularly rough period and decided I didn’t actually need it…tappering off it was HORRIBLE, withdrawls unlike any other drug I’ve experienced and I was only on a low dose. However, I was actually considering stopping the Sertraline & Propranolol and trying Venlafaxine again nonetheless as it’d be great to have something that is effective for both the VM and the anxiety. It sounds as though Amitriptyline and Noritriptyline work wonders for some people, but I know a lot of people can’t handle high enough doses to get any noticeable improvement re: anxiety / depression, so I think I’ll leave these ones for now and look into them again if I don’t have success with the Venlafaxine.

I’ve cut out caffeine for the most part, and will do some greater research into migraine diets.

Thanks for all your advice and kind words.

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Hi Lucy,

Thanks for your reply!

I’m going to try and get on top of this now so that it hopefully doesn’t get any worse. I actually have an appointment with my neurologist tomorrow, I think I’m going to let him know that I want to change my med and look into migraine diets etc…it’s all about being future focused :slight_smile: I know I need to be really careful with they way I word things with him though because he likes to link everything back to anxiety, which can get a bit frustrating. The thing is, I know I’m anxious but if it wasn’t for my anxiety leading me to do online research I may have gone another 10 years or more without being diagnosed. Yes, anxiety can be horrible (I’m lucky to have only suffered it mildly up until now), however, in my case it has always helped me get my act together and do what’s best for my health in times when I’ve been neglecting it.

I’m from Melbourne, we’re practically neighbours haha.

Thanks for the advice re: searching for particular topics, I’ll definitely do this.

Yes, I’ve actually been recommended Aspirin quite a few times, specifically to take 900mg a few times a day. As Helen said below, it can actually be helpful for people with the painful headache type of migraine. However, it most definitely wasn’t helpful for me…I cringe thinking about how many Aspirins I’ve taken over the years to no avail.

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It’s good to hear you sounding so motivated.

I used to live in Melbourne until seven years ago. If you ever come to Ballarat and see a middle-aged person staggering down the street, it will probably be me. :wink: (Shouldn’t say that, because the attacks are less frequent these days.)

Gee, I don’t know about MAV stemming from anxiety. I tend to think any anxiety comes from living with the MAV.

Take care. :slight_smile:

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Propranolol is also used to treat Anxiety too. As with most drugs you need to be able to reach and maintain an effectively high dose of whatever to gain control and whereas Venlafaxine, Ami and Nori are antidepressants my understanding from what I‘ve read (no practical exp of any of them) is that the levels prescribed for MAV shouldn’t affect mood. No doubt your neurologist will tell you what to try next when you meet up. Helen

Hi Nicky
Sorry to hear you are a fellow sufferer. I have recently started Venlafaxine and it is having a really positive effect on the symptoms that I have suffered daily for over 2 yrs. Like yourself, I had tried Venlafaxine before and it wasn’t great however that time I was on the immediate release tablet but this time I am taking the EXTENDED RELEASE capsules and I have had zero side effects since starting them in March. They are called Venex XL capsules, the 37.5mg dose contains 3 x 12.5mg pellets - i opened the capsule and started at 12.5mg daily and increased it by 12.5mg daily each week. I am now at 87.5mg and I have felt he least symptomatic since this started in Sept 2016. It has also worked wonders on my anxiety levels. I do know that some people have a problem coming off it and I discuss3d this with my GP - his view is to get better first and when it’s time to come off it we will need to taper slowly. So after 2+ yrs in a dizzy fog, I decided to take the meds and worry about coming off them at a later date.
Hope this helps
Mav

You are very lucky to have these manufactured and available in Ireland. Very natty to have three little pills in a capsule, great idea. @nin told me about them but I don’t think they are universally available. I couldn’t find them in England. There’s alot of Extended Release capsule brands available but they seem to be packed with many tiny beads people tirating have to divide up and count. Maybe the good idea will eventually spread. My GP laughed when I asked about tirating up on Venlafaxine. She said ‘37.5mg is a tiny dose, just take it’. She’s not familiar with med sensitive MAVers! Yet, she did teach me-to tirate up on beta blocker No 2 after I failed No 1. Helen

Hi

I totoally relate to what your saying like you I have had short episodes on and off since I was a kid . Then at 29 it started becoming chronic I don’t know why and this doesn’t mean yours will.

It’s scary to read the internet BUT even so if it becomes chronic please remember chronic migraine has a high success rate of being treated so chronic or not chronic find a good doctor and work on controlling it . That’s all you need to focus on :slight_smile: it’s too overwhelming to take it all and worry about the what if!

I get all your symptoms the dissociation being the worst . However everyone here is so helpful and a lot of people here have successfully got better also remember most people who recover don’t come on to forums xx

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Hi nicky, welcome to the forum, sorry to hear you are a fellow sufferer but you are in good company here with us. I’m in a similar position to @Mav and second her inputs and experience on venlafaxine, I’m currently on 137.5mg,just started today and will move to 150mg in a few weeks. I have to say since going beyond the 112.5mg,i do feel my symptoms coming under more control and I think it may have helped my menstrual migrane this month. I’ve read and heard about withdrawal but I’ll be on this med for a long time so will manage that at a future time by tapering super slowly. Hope you can get a handle soon in your symptoms :crossed_fingers:. Elaine

Hi Welcome. I’m sorry to hear of your suffering. I had been suffering with visual vertigo, dizziness, unsteadiness and light sensitivity for about 18 months daily when I finally saw a neurologist. He started me on Amitripyiline and I’m only on 20mg and after 8.weeks the improvement is amazing, I’m not perfect but I have hope that I can get this under control and have my life back! Throughout this time I went back and forth from despair to worry to despair, struggling through work every day. Every moment was horrible and hard and scary but if nothing else I’ve seen my strength come out and help me, yours will too it’s there when we need it. Wishing you better days ahead.

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Hi Helen
Yes my GP agrees with yours that 37.5mg is a tiny dose…I was nervous of even going up to 75mg but the GP reassured me that even 75mg is a small dose, he said 150mg is prob a medium dose with the max being 225mg and so I have plenty of headroom to increase. That reassurance gave me the confidence to increase again at the weekend and so I took 87.5mg yesterday and plan to stick that for 7 days and further increase as necessary.

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Hi Helen,

I don’t think my last message was very clear, apologies. I know that people take Propranolol for anxiety but unfortunately it has little to no impact on mine. I don’t believe that I am at a dose that is helping much with the VM either, however, I am unable to increase the dosage due to my low BP :frowning: The reason that I want to try Venlafaxine is because I know I can handle a dosage that is effective for anxiety / depression from past experience, and am hoping that it will also help with the VM.

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Thank you so much for sending this through. My appointment is this morning so this is perfect timing! I’m glad to hear that Venlafaxine has been helping you. I hope they have the extended release available here. I remember that last time I took this drug I had brain zaps if I missed my dose by even a few hours :frowning:

I hope that the Venlafaxine continues to improve your symptoms, I’m glad to hear that you’ve reached a dosage that seems to be having a positive impact. Thank you for the well wishes!

I’m so sorry that you dealt with this for 18 months before seeing a neurologist but I’m happy to hear that you’re having some success with Ami, this drug is a lifesaver for so many people suffering from so many different conditions.

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