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:
- Blurred vision
- Hard to concentrate on conversation/noise unbearable
- Speech becomes garbled/stutter (note: I never previously had a stutter and can usually communicate fine)
- Feel like I’m moving/shaking like there is a vibration running through me, sometimes to the rhythm of my heartbeat
- Head pressure, sometimes progresses to a headache but not a thundering typical migraine headache
- Tinnitus (I’ve had this for years)
- Feel feint and confused
- 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.
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.
- 31yrold female
- fairly good health
- Sleep well
- Issues with anxiety in past now under control
- 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??
- 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
- 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.