Down the Rabbit Hole

Hello all

This will be a long read so let me say first that I am very grateful for this site and all the information available, it’s been an invaluable resource. It’s also helped me come to terms with what’s happening and helped me feel less alone. So thank you from the bottom of my heart!

I’m new to the diagnosis of VM via my Neurologist.

This all started for me July 2016 after two operations and a week stay in hospital (including fighting an infection, I was considered septic at this point), though I’m unsure if this is the cause or a coincidence. I had intermittent dizzy spells which were alarming and left me feeling confused and ‘distant’ – I put this down the low blood pressure as my BP tends to sit lower than average.

I battled with what I thought was low BP for almost two years with GP appointments and many blood tests (all were tested fine). I was told there is no way to medicate low BP and to drink more/consume more salt. So I did that, I must have been the hydrated person on this planet over the last 2 years but it didn’t help.

Fast forward to May 2018 and I attend a GP appointment with a list of symptoms. I expressed that if I had just turned up with the symptom of dizziness it would have been completely inaccurate. He patiently listened to my symptoms as follows:

    1. Lightheaded/dizziness
    1. Blurred vision
    1. Hard to concentrate on conversation/noise unbearable
    1. Speech becomes garbled/stutter (note: I never previously had a stutter and can usually communicate fine)
    1. Feel like I’m moving/shaking like there is a vibration running through me, sometimes to the rhythm of my heartbeat
    1. Head pressure, sometimes progresses to a headache but not a thundering typical migraine headache
    1. Tinnitus (I’ve had this for years)
    1. Feel feint and confused
    1. Feeling like my brain is switching on/off as though I’m about to black out. (This is while at my worst)

My GP expressed he felt these were symptoms of either a migraine or possible small seizures and referred me to a Neurologist. The appointment wait time was 3 months.

9th Aug 2018 - Neuro appointment. He almost immediately diagnosed me with acephalgic migraines (I have no thundering headaches just intense pressure) and explained that they can cause almost any symptom, he also explained that migraines can cause the Autonomic Nervous System to respond in a strange way which is possibly why my BP lowered further than usual during an ‘attack’.

The migraines up until this point followed a very certain pattern. I would have an attack and then it would take me around 2 weeks to fully recover, and the circle repeats. I told the Neurologist that when I didn’t have a migraine I was perfectly fine, but I don’t think I had fully considered what was happening, towards the end of those 2 weeks I would be feeling much better but not altogether 100%, unlike 2 years ago this wasn’t episodes anymore.

July 28th 2018 I had a bad attack which was fueled by anxiety and a panic attack. This started constant ‘dizziness’ (et al), when I had my appointment with the Neurologist I was still ‘recovering’ from that so I didn’t really think much of it. But it hasn’t got any better.

Since then the VM had become much worse, I have the above symptoms and a constant rocking/swaying feeling which wouldn’t go away. It caused intense sickness and I was bedbound for a while.

The Neurologist Prescribed me Topiramate (1 25mg twice a day) I took one days’ worth and had a horrible reaction. Not only were my feet and hands in constant pins and needles, my anxiety was the worst I’ve ever felt, I couldn’t stop shaking all night. The worst reaction was the feeling of pressure in my head/behind my eyes, almost the same as when you put a BP cuff around your arm and inflate it, your hand may feel ‘full’ and ‘swollen’, this is almost exactly how my head felt. I sat on the bedroom floor rocking back and forth with my head in my hands hoping I wasn’t going to die. Though I’m sure the anxiety fed that response. Safe to say I didn’t take anymore! The side effects wore off after 5days, all of the above and complete lack of appetite, as well as an inability to taste any form of Fizz in drinks, which frankly had me rolling around laughing, so there’s that.

After this I did a whole host of research which lead to this forum which has been a fantastic resource!

I again went back to my GP as I’m unable to see my Neuro for another 6months now (gulp). I asked for Amitriptyline as I have read wonderful things about it helping VM sufferers. GP expressed that she too suffers from migraines and once tried Topiramate and understood the side effects, she agreed to trial me on Ami though she expressed that it wouldn’t do much for the dizziness. She also prescribed me Cinnarzine for sickness.

However…

10mg of Amitriptyline dulled the ‘rocking’ sensation though I was still aware of it, after 2 days I upped my dose to 20mg (as prescribed) and thankfully the rocking stopped, I only feel it if I concentrate very hard, and even then its only when I’m at my worst.

I’m so filled with joy that the rocking has stopped, it’s massively helped with the nausea, I no longer have to take sickness tablets.

My current main problem is the constant dizziness, swimmy head and fatigue (head pressure and tinnitus included). It’s been less than a week since I started taking Ami, I’m hoping to increase the dose again to 30mg and keep going until the dizziness stops. If it does.

I work from home, I have a very creatively fulfilling job but I’m unable to do work for any length of time. I find my vision won’t stay still for long enough to read or involve myself in any detail. I’m also very tired all the time. It’s very frustrating.

The first week I after the Neuro appointment I was filled with health anxiety which I’m sure made things worse. I have come to accept this may now be a chronic condition I have to live with, I just hope I can control these symptoms enough to live a semi normal life. I get very sad when I think about the time frame needed to settle VM. It seems such a waste of time when I could be living and enjoying life. I’m not one to sit around or take naps, my life has been turned on its head in recent months, I feel so lazy but I do understand I need time to heal. It’s very exasperating.

If you’ve made it this far well done, my heads a bit kilter right now, I hope it all made sense.

I’d be interested in using the personal diary part of this forum, if I ever manage to beat this beast then I hope this information can be in some way useful to someone.

Extra notes:

  • 31yrold female
  • fairly good health
  • Sleep well
  • Issues with anxiety in past now under control

Possible triggers:

  • Caffeine tends to trigger an attack which takes around 2 days to settle.
  • Alcohol… Yikes.
  • I have an inkling over ripe bananas do the same??

Medication:

  • Sumatiptan - did nothing at all.
  • Cinnarzine - helped the motion sickness but made me sleepy
  • Topiramate - made me feel like I was dying lol
  • Amitriptaline – Seems to be helping the rocking/swaying at 20mg

Exercise:

  • I have been scared to go back to the gym, I was a gym enthusiast previously. I’m hoping Ami will help me get back there. I’m trying to eat well and careful not to gain weight as I’ve read Ami can contribute to an increased appetite.
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Welcome aboard/oh no not another one :slightly_smiling_face:

Exactly what I created it for, please do.

Isn’t this thing ridiculous?

I found Ami very helpful, I hope you find it helpful too. I found weight gain an issue, especially after I gave up running to see if that would help (I got very much better after I did, but this could be confirmation bias and I could have been getting better anyway).

Your comment about Caffeine is very timely :slight_smile: as I had a relapse this week from OD’ing on it (but I mean OD’ing!)

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Welcome @WhiteRabbit (love your name),

It seems that if Ami controlled your rocking, it might help you control the rest in a few weeks. Meds take time.

I am curious about your rocking versus dizziness versus swimming head. I would say mine is rocking (I have been dealing with that since January, now a little better because of effexor), I don’t really have dizziness or spinning vertigo, but would think swimming head was similar to rocking.

Related to tiredness, I felt super tired at the beginning, it was like I could not do anything. Migraine seems to be tiring on the whole system. When I get overloaded, I get super tired still.

Maybe you can start walking and then move into more intense exercise.

All the best, we are all here together.

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Thank you! :blush:

About the weight gain, can you isolate why this happened? Was it an increase of appetite, water weight, or simply a more sedentary lifestyle after you stopped running?

Oops! lol kicking the caffeine habit has been a challenge I must say. I’m sure some of my fatigue is contributed from the caffeine detox, not that I drank much, 2 cups max a day

Thank you! :rabbit2:

Lets hope so! I do understand its early days yet but I’m trying to remain positive

Defining is difficult but ill try

The onset of an attack nearly always begins with dizziness/light headedness, that feeling of one too many drinks (or fully drunk, can’t walk in a straight line, if it’s a bad one). If you turn your head side to side it will feel as though your vision is ‘trailing’ somewhat. I also consider this a swimmy head as it feels like my vision is swimming around.

I have had attacks of full vertigo (room spinning) but that didn’t last very long and it’s happened so rarely I’m not convinced it’s a part of my VM at all.

While the above the very annoying and I can’t seem to do anything other than lay down, when I do lay down it tends to settle the dizzy head somewhat and Im ok until I start moving around again. However the rocking/swaying feeling is new this last month, it’s a feeling of being on a rocking boat constantly, like my body is moving back and forth or in circles and no matter what I do I can’t make it stop, even laying down doesn’t help, the motion continues. This caused horrific motion sickness, but like I said the Ami seems to have helped stop that.

I may try going back to the gym next week and keep it very low impact, Ill update with any progress :blush:

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Amitriptyline calms you down a lot … I mean you only have to reflect how you feel in the morning, right? I suspect this means your brain might be burning less calories (and your brain is a surprisingly big % consumer)

Yes, and the lack of running surely had an impact.

Completely agree with this limit based on being fine for months, then having 3 one aftenoon!

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great the rocking is gone, it is my main symptom and i cant stand it, but does not cause nause.
i had the drunk feeling as well but that is gone for the most part.

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Hi White Rabbit

Looks like you quickly got a handle on the beast that’s MAV. well done. It’s something many struggle with, must grasping the concept. After all when you first to it, it does seem very strange, an entirely new concept.

That’s typical MAV. You react to motion, environment or self. In this case turning your head.

There are two types of full vertigo - true vertigo. Vertigo is always rotary. Either the environment spinning or you feeling you are spinning yourself maybe even internally rather than visibly, ‘’Dizziness’ doesn’t generally cause nausea. Vertigo normally does unless you are medicated maybe. Are you sure the ‘rocking’ you describe isn’t rotary just maybe a gentler version of the previous sensation. The neuro-otologist who diagnosed me told me not alit but he did say ‘migraine causes vertigo’. All this just out of interest. If it’s a symptom caused by the migraine the preventatives will eventually stop it.

With regard to weight gain @turnitaround’s right I’m sure. I don’t know about Amitriptyline but most drugs list weight gain as side effect. Some drugs actually do change metabolism. I take a betablocker, Propranolol, and is one. They say you put on 7lbs quickly and I did after stable weight for years and it won’t shift.

Good luck with your journey. Helen

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Regarding bananas… Yes, they’re a definite trigger because they contain tyramine.

A few months ago, some of us put together some Wiki pages and included information and links that we had found in our research. I posted several things in the Diet Wiki, which you can find here:

Scroll down to my post and then go to the “Yes List” and “No List” images. Then just below that there is a link for a “Tyramine-safe food list.”

Tyramines are compounds produced by the breakdown of an amino acid called tyrosine. Basically in some foods, the tyramine levels build up as the food ages. So a ripe banana contains more tyramine than a greener banana. Aged foods containe more tyramines than fresh foods.

For some people, tyramines are a migraine trigger. That’s why you’ll frequently see things like aged cheese and red wine on lists as possible triggers.

I have a friend who says that bananas are a major trigger for her.

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My apologies for the delayed response :slightly_smiling_face:

Ill consider this the lesser of two evils. I can always lose weight when I gain control again. For now I’ll be careful. Ill track progress it might be useful to others in time.

I think acceptance is important with health related complications, I don’t see how anxiously overthinking will help. That being said, I’m not all rainbows and cupcakes, I’ve spent the last 2 years struggling to see a silver lining until this recent diagnosis.

No the rocking was definitely a back and forth ‘rocking’ or ‘swaying’ (sometimes side to side) very much like being on a rocking boat. I struggle with motion sickness at the best of times and this constant feeling of back/forth left me very unsettled to say the least.

This is very interesting, I knew that over ripe banana made me much worse! So I wasn’t going crazy after all! lol

Thank you everyone, you’re all very kind :blush:

Not sure still about the ‘rocking’. I’m medicated and was 24/7 dizzy (rotary vertigo - self motion. Me with illusion of movement, not the room appearing to move) for over three years before meds started to control it and then my vertigo went to backwards and forwards like on a ship, and then lessened and lessened to sort of floaty/waiving and then stopped. With me I’m convinced my rocking was a halfway between but we are all different and I appreciate that there are some who only ‘rock’ and according to Dr Hain are treated quite differently with drugs.

The ‘banana’ thing. A lot of the Avoid foods on the Migraine Diet also appear on any low tyramine diet sheet which I think is more than coincidence. Helen

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I think it takes a while for the Ami to truly build up in your system and work . It took me about 3 months building up slowly to 30mg to get much relief. It didn’t stop the dizziness as a t that time chronic migraine head pain was my biggest problem but I think that while I was on it the fact that it zonked me out allowed me to rest up and it was the extra deep sleep that actually helped my headaches lessen.