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, itās been an invaluable resource. Itās also helped me come to terms with whatās happening and helped me feel less alone. So thank you from the bottom of my heart!
Iām 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 Iām unsure if this is the cause or a coincidence. I had intermittent dizzy spells which were alarming and left me feeling confused and ādistantā ā 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 didnāt 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:
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- Lightheaded/dizziness
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- Blurred vision
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- Hard to concentrate on conversation/noise unbearable
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- Speech becomes garbled/stutter (note: I never previously had a stutter and can usually communicate fine)
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- Feel like Iām moving/shaking like there is a vibration running through me, sometimes to the rhythm of my heartbeat
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- Head pressure, sometimes progresses to a headache but not a thundering typical migraine headache
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- Tinnitus (Iāve had this for years)
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- Feel feint and confused
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- Feeling like my brain is switching on/off as though Iām 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 āattackā.
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 didnāt have a migraine I was perfectly fine, but I donāt 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 wasnāt episodes anymore.
July 28th 2018 I had a bad attack which was fueled by anxiety and a panic attack. This started constant ādizzinessā (et al), when I had my appointment with the Neurologist I was still ārecoveringā from that so I didnāt really think much of it. But it hasnāt got any better.
Since then the VM had become much worse, I have the above symptoms and a constant rocking/swaying feeling which wouldnāt 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 daysā worth and had a horrible reaction. Not only were my feet and hands in constant pins and needles, my anxiety was the worst Iāve ever felt, I couldnāt 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 āfullā and āswollenā, 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 wasnāt going to die. Though Iām sure the anxiety fed that response. Safe to say I didnāt 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 thereās 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 Iām 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 wouldnāt do much for the dizziness. She also prescribed me Cinnarzine for sickness.
Howeverā¦
10mg of Amitriptyline dulled the ārockingā 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 Iām at my worst.
Iām so filled with joy that the rocking has stopped, itās 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). Itās been less than a week since I started taking Ami, Iām 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 Iām unable to do work for any length of time. I find my vision wonāt stay still for long enough to read or involve myself in any detail. Iām also very tired all the time. Itās very frustrating.
The first week I after the Neuro appointment I was filled with health anxiety which Iām 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. Iām 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. Itās very exasperating.
If youāve made it this far well done, my heads a bit kilter right now, I hope it all made sense.
Iād 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.
- Alcoholā¦ 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 ā 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. Iām hoping Ami will help me get back there. Iām trying to eat well and careful not to gain weight as Iāve read Ami can contribute to an increased appetite.
as I had a relapse this week from ODāing on it (but I mean ODāing!)
