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7 months in and very glad I found you all

Hi all, I’ll go by Don here

My story so far sounds pretty similar to a few others, but reading all of your experiences have helped me tremendously, so I want to pay that forward with a post of my own.

I am an early 20s male college student with no known health issues whatsoever. At the time that my symptoms started I had never been in better shape, happier, or healthier feeling in my life. I started having issues with what I now believe to be MAV/VM starting in September 2018.

For about two weeks I had horrible daily stomach aches. I think I had a very low fever during this time as well and felt somewhat flu-like, so the running theory is I had some kind of virus. In that time I had the worst headache of my life, with a very traditional migraine pain pattern, that completely cleared in a few hours. Once the stomach pain started to subside, I woke up spinning one morning and have not really stopped since. I was bed-ridden with vertigo for an additional two weeks, and made the decision to withdraw from school temporarily as I had fallen too far behind to recover.

I moved back in with my parents under the impression I was suffering from a virus and vestibular neuritis and would just need time to recover. The vertigo calmed down for a about a month, but I was left with intense brain fog, fatigue, a mild but strange headache-y feeling behind my eyes, and low-grade dizziness. After that month, more symptoms and much stronger dizziness came, and have stayed.

Now I am dizzy, motion sick, foggy-brained, and headache-y to some degree constantly. It fluctuates, but never goes away entirely. I have much worse episodes at least monthly, which keep me down in bed for a week or two. Recently, I have been having smaller episodes which only last a few hours. During these episodes I am light, noise, and very motion sensitive. Less frequently during the episodes I experience nystagma and the alarming “magneto head” feeling I’ve only seen described here. Outside of the more distinct episodes I experience strange visual disturbances, I perceive motion in stationary objects, and have frequent headaches.

I was first diagnosed with MAV/VM by a headache specialist in december 2018, and have since gotten the same diagnosis from a neurologist and two ENTs. I’ve tried numerous drugs with no luck so far. With input from multiple doctors and resounding reassurance from this forum, I will soon be trying venlafaxine.

I am still slightly hesitant with my MAV diagnosis because I don’t seem to fit the bill when it comes to migraine history. Maybe someone here can shed some personal experience on the subject. My family has a very limited history of migraines, and as far as I know I don’t have a history of migraines at all. I can think of maybe 3 times in my life where I’ve had a headache I would describe as a migraine. I could also treat my body terribly (from a migraineur’s perspective at least) and never have an issue. i.e Non-existent sleep schedule, putting back booze and coffee like there’s no tomorrow, inconsistent meals, maintaining high stress levels and putting 60+ hours/week towards my studies, etc.

However I have struggled with very frequent “normal” headaches and neck/shoulder pain for my whole life. I’ve also had two periods in my life where I would have a horrible headache every single day for around a month. These periods came and went with no apparent reason. With what I’ve learned over the last few months, I’m now questioning if these headaches are “normal” or not.

Regardless, seeing people’s experiences here and comparing them to mine is too convincing, and I am all in on a MAV/VM treatment plan. This site has filled me with hope again, and I am very happy that I found you all.

Don

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Hi and welcome. We aren’t doctors but from your script I’d say it’s all just typical MAV/VM, even the horrible daily stomach pains could be Abdominal Migraine.

Three times is more than enough. Two more at least!

Still if you can live with the diagnosis from all those varied specialist and tackle the preventatives. I wouldn’t worry about past history too much now just concentrate on trying to get The Beast under control which seems to be what you are doing, Helen

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Welcome Don, let’s help you get out of this mess!

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Welcome Don, you have found the place where you can just be you. We all are in the same boat with varying degrees of symptoms, some greater, some lesser and even some you’ve probably never heard of or experienced. MAV is a very difficult thing to diagnose since there are such varied experiences, so that you have firm diagnosis’s from different doctors is amazing! So many here wait years and some a decade for a firm diagnosis. I have had headaches for what seem like my whole life, but migraine was not what I felt I had experienced prior. My dad has had headaches for his whole life, with the added bonus of scent sensitivity. Other than those connections, I have none in my family either. In retrospect now knowing so much more about the condition, I realize it’s not about the headache. Many here do not have any head pain, just pressure, dizziness, brain fog (& the list goes on). The name Vestibular “Migraine” is sometimes deceiving. Again, welcome to the forum… you are not alone in this!

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Another welcome. Hope your new meds will help. I would strongly recommend cutting out the caffeine and booze (stick to vodka if you must drink). These two were defiinitely very helpful to me, as is keeping to a sleep routine (no more long lie ins or late nights)

There is absolutely no migraine or even headache history in my family (my parents and both sets of grandparents never had headaches or bought pain meds) yet I have MAV (misdiagnosed for years as Menieres and then Endolymphatic hydrops) and my teenage son (but not my older daughters) started having occular migraines in September. So, although there is often a strong genetic element it doesn’t appear to be so in my case but could be argued that my son has inherited it from me (sob!) it has to start with someone. Also, I’d be patient with the meds they often take a few months to start kicking in.

Well done getting such a fast diagnosis, my specialist reckons the faster you are diagnosed and treated the easier, quicker it is to treat and the more likely you can heal.

All the best

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Thank you all for the warm welcomes and words of wisdom. I count myself quite lucky for getting a diagnosis and finding this site so relatively quickly, that seems to be the exception rather than the rule.

I didn’t mention in the original post but I’ve also started diet and lifestyle changes that are recommended here and by my doctors, not just med trials. I’ve been drinking coffee daily for years, so quitting caffeine isn’t fun but I won’t miss anything else terribly.

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As for medications, I’ve been on 50mg lamotrigine for 2-3 months with no clear relief from symptoms. Has anyone here had any luck with it before? I have not even seen it mentioned yet. I’m just curious is all.

My neurologist (who had me on the lamotrigine but was considering amitriptyline and venlafaxine) was not overly confident in a migraine diagnosis so she referred me to an ENT for a second opinion (which took months to get into, uhg!). The ENT was a lot more confident in a migraine diagnosis and said that he has had more success with venlafaxine, and didn’t even really list lamotrigine as an option he would prescribe. They now both agree venlafaxine is the best option which is why I’m switching. Multiple doctors have expressed that anxiety could at least be playing some part for me due to strong family history, so that’s another reason.

Initially I was given verapamil and then nimodipine, but both made me feel awful and I could not stay on them longer than a few days.

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DizzyDon, I take lamotrigine for seizure control. I’m not aware of its making any difference to my vestibular migraines. It’s hard to be sure because I was taking it well before this new world of MAV.

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Hey Don, welcome!

I was hesitant too for a whole year. But the doctors cannot find anything else wrong with me. Once I started to see the neck/back pain, mood swings, tingly/foggy head, and mild off balance feelings from earlier years I started to connect the dots.

Same as me. My sister gets migraines occasionally, but I don’t know of anyone in my family, even cousins/aunts/uncles that get them. And yes, when I first saw a neurologist he asked me if I ever get painful headaches and I said “nope”. Then he asked “what happens then when you are at your worst?” and I answered “well I just can’t do much but lie down and put an ice pack on my head”. And he says “but it doesn’t hurt?” and I said “no, its just debilitating head pressure and and can’t think straight, but not all that painful”. I’ve never had visual aura, or any ice pick in my head. But have a tingling nose pressure or forehead pressure for a good part of each day for the past 10 years. Of course it used to be so mild I never really understood what it was or that it could be a problem.

Same as me. But I was super robust as you described yourself until my late 20s when I developed neck/shoulder pain. I did physical therapy a lot, I exercised a lot, and these things helped, but nothing was really fixed. And I was always super irritable, anxious, itchy, and hot feeling when the neck/back really acted up. Started having problems at the base of my skull in my late 20s, suddenly lost hearing in my left ear in my early 30s (but no dizziness), then more back issues down into the thorasic spine in my mid-30s, and now all the way down to my lumbar in my late-30s. An MRI confirms nothing is wrong with the spine itself, it’s nearly perfect. So it really bothered me knowing something was wrong and it was getting worse but I didn’t know what or how to fix it. So, you think you got MS or something but nope. Well, then everything snowballed out of control and I got massive head pressure, insomnia, severe anxiety, dizziness and finally got diagnosed with a migraine thingy. :weary:

I think the term migraine is unfortunate. I wish our illness didn’t use that term sometimes because it confuses people, maybe “neurological dizziness” would be better? But also there may be actual problems with the inner ear that we just can’t see with today’s tech and we are simply having migraines along with an inner ear issue. But if I were to bet on it, I would say it was mostly migraine (neurological) activity in my case.

Anyways, sorry for my long post, but you are incredibly lucky to find out what is wrong with you at such and early age! You will rebound quickly. Just gotta find the right mix of treatments and take it much more easy with life. Aside from taking life slower, my best treatments have been Amitriptyline, CBD oil, and the Cefaly device.

Erik

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No apologies necessary, thank you for your reply it was very helpful.

Maybe hesitant isn’t the right word for how I feel, I just want to understand what’s happening and why and for it to make sense. Strong familial history of migraines would just be a massive clue that would help it “make sense” sort of for me. My mother and her mother both get very infrequent migraines with aura. And as I said I’m now wondering if my headaches are rooted in migraines. I realize MAV/VM can be completely detached from any form of a headache, again I’m just looking for patterns and clues and since I do have a history of headaches I think there might be something there is all.

I’ve seen a lot of posts here talking about CBD, I might look into it. I’ve tried the Cefaly device in a headache specialist’s office and it didn’t seem to help, does it have an immediate effect for you or is it more preventative? One time he had me use it I felt drastically different but not exactly better. I’m not even sure how to describe it, I think I felt way less dizzy but my concentration was way off and I had a weird pressure behind my eyes/forehead. I was in a car during that though so who knows. I felt like I was on a trampoline in a few hours so I haven’t rushed back to use it or anything.

Yeah, it seems like migraines are not lamotrigine’s primary use. At least it didn’t give me any side effects while I was giving it a try.

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In the internet there are many papers recommending it for MAV, From memory I think most specifically for the vertigo rather than migraine headaches but don’t quote me there. It doesn’t appear much used in UK so I ceased reading. (checked it out and it is particukarly recommended for ‘migraine with balance issues’ in Exeter Headache Clinic PILs). It’s apparent lack of popularity is because it can cause a very serious skin rash in some it seems. Helen

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You’ll find virtually all drugs used for ‘migraine prevention’ are the same. There’s only one specifically designed as far as I’m aware and that’s Pizotifen. All the rest - including all those you mention above - are being used ‘off label’ for MAV. Some have been used for it so long you’ll find it listed with doses in the accompanying PIL, others not so. Their success for migraine prevention was supposedly discovered by accident. Helen

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Trying it once isn’t going to do much, I’m not sure what the specialist was hoping to achieve with one session. Its only a preventative, although it has an acute setting. So with all preventatives you need to stick with them 2-3months or longer to understand if things are improving. However I’ve noticed pretty good results in a few weeks. Didn’t feel much in the first week.

That can happen with any preventative. Recovery is not easy because you will start to feel different but not necessarily better for a while. In addition, will have side effects that could make you feel like everything is worse. But you need to try to focus on how the head pressure and dizziness is doing and try to forget the rest. As you see an improvement, it gets easier to accept all the side effects, and many side effects will diminish with time.

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He said in a few of his patients with painful migraines that one session would help their pain a lot. I don’t think he was hoping for much, just wanted to try on the off chance a harmless device was the ticket for me. After he said that I’d probably have to use it preventatively for months like you say.

Hi Don,

Thank you for sharing your story.

To have several assessments from different people who come back with the same diagnosis, that is something.

I myself had, what everyone associates to be, migraines when i was in my youngest years at primary school.
I would regularly get sent to the medical room and lay in the quiet and darkened room until my mum picked me up.
I would get home, be sick and have the numbness in my face and hands and even my vision would blur.
I grew out of that but at the age on 13 i developed, what was only diagnosed 3yrs ago to be abdominal migraine.
I have always suffered with cluster headaches, but again was told by the neurologist that they are actually another form of migraine i was suffering with.

They say our bodies change every 7yrs, and with all your hard work and commitment with your studying, maybe that took its toll on you.
I’ve learnt so much over the years how stress affects us in so many different ways. I’m actually fed up with being told ‘it’s stress related’ lol.
I’m in my late 30’s now and only got rid of the spotty stage about 2yrs ago, it’s just frustrating how it’s coming out in other ways now.

I hope you find whatever works for you to help calm your symptoms.

As you’d have already seen from everyones stories, there seems to be so many different things to try but not the same that works for everyone.

Have a good Easter weekend guys :sunglasses:

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I am 3 weeks in taking amitriptyline now at 20mg. That is so true, I feel different but not better, I’m going to stick with it until I see the neurologist again in 6 weeks.

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Got my venlafaxine prescription on tuesday and took my first dose this morning. I’m starting at about 1/3 of a 37.5mg xr capsule

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Hi! How has venlafaxine worked for you ? Thank you!

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Yes Don, like you I treated myself terribly, lots of stress, bad diet, burning the candle at both ends, bad sleep etc and never had a problem. Then a neck injury triggered MAV, MAV can come on out of the blue. Before the neck injury though I was very tired and feeling cruddy, I believe it was lurking behind the scenes all along. Once it’s triggered though it’s hard to get rid of. Amitripyiline has helped me some,but it’s early days. I hope the meds work well for you