Where to start!? Firstly, hello … I’m new here and came across this forum last week. I’m not usually one to share my experiences, however, I’m hoping that by doing so I can get to the crux of my health problems, and maybe help others too.
Rather than bore you with my life story, I’ve tried to summarise key points in chronological (and short) order:
2007: Onset of very mild intermittent unsteadiness
2011: Sudden but sharp increase in unsteadiness, accompanied by weakness/areas of numbness in lower extremities (primarily calves and thighs). Symptoms are manageable and I’m prescribed a course of prochlorperazine. MRI, bloods and EMG show no obvious cause for concern, have seen a neurologist who cannot reach a diagnosis.
2012: Unsteadiness continues, weakness in lower extremities seems to go through peaks and troughs, but life goes on and I learn to adapt. Unsteadiness in head seems more of a challenge vs leg weakness during this period.
2013: Unsteadiness and lower extremity weakness/numbness takes a sudden increase around Dec/Jan, walking starts to become a real challenge - especially large public spaces!
2014: Jan/Feb - The above are now accompanied by a dull but constant pain in the back of head/upper neck and a horrible groggy feeling when I wake up, which stays (brain fog?). This is first time I’d experienced head pain, and it would stay for days/weeks on end without respite, started to get really concerned so went back to GP – who diagnoses as stress (I had a very demanding job) and re-prescribes prochlorperazine to ease unsteadiness.
2014: March - I start a new role at a dream company, however, my health is at its lowest. I manage to make it in for 2 days before realising that I need to stop – finding it very hard to walk unaided, legs are incredibly weak, feeling very unsteady and constant dull head pain is making matters worse. Very fortunate that my employer supported me and allowed time off, I request another meeting with a Neurologist and am referred to Professor Kevin Talbot in Oxford.
2014: April - Neuro reassures me that I do not show signs of ALS/MS (which was my biggest fear) and feels there’s a correlation between the unsteadiness, extremity weakness and the headache - which seems to exasperate symptoms. This is the first time I’m told I could have migraine, and am prescribed 80MG x3 per day of Propranolol as a prophylaxis. We do another rounds of bloods and an MRI on brain/spine – all clear.
2014: May to Dec - Propranolol seems to control the headaches, which in turn reduces the extremity weakness and unsteadiness. I’m walking a lot better than I was in Feb, albeit, not as well/freely as I was in 2012/13. I’m now back in work and splitting time between home and the office – again, I’m incredibly lucky to have such a supportive employer. Still not feeling confident enough to walk unaided in large spaces, so use my wheelie laptop bag as support – which gets me from A to B.
2015 – 2017: Continued use of Propranolol has (somewhat) given me part of my life back, headaches are limited and whilst unsteadiness/weakness dips and spikes, the lows are not as bad as early 2014. My leg strength has never fully recovered and mild unsteadiness is with me all the time – I just don’t feel ‘normal’, however, I yet again learn to adapt to the symptoms and continue on. I made a decision to stop Propranolol in Jan 2017 as I had concerns re. hair loss, I felt confident enough to stop so couldn’t have been doing that bad! Btw, going into supermarkets/large spaces, standing in queues and prolonged independent walking is still a problem, as unsteadiness always starts to kick in, so where possible I avoid.
2018: Uh oh …… starting to feel increased weakness in legs again from Dec/Jan. This slowly seems to increase end Feb/March, the unsteadiness is perhaps more a concern than leg weakness. April – Things are really kicking off now, lower extremities feel/numb as weak as they did in March 2014 (if not worse), morning grogginess seems to be coming back - though without any dull head pain (yet) – and unsteadiness is pretty bad. Work is becoming a challenge and I’m not confident walking more than 5-10 paces unaided, even with my laptop wheelie bag! Back to the GP to get another dose of Propranolol at a lower 60MG per day.
May: Things are still bad and I’m hoping the PP alleviates symptoms soon, noticing very slight tightness in the head when waking up. I stumble upon Dr Surenthiren and this forum whilst researching symptoms on line, and arrange a consultation for June. I travelled alone to see my wife (who’s working abroad) and had to attend a wedding (again, alone), both were incredibly difficult and terrifying. I struggled to stay on my feet longer than 1-2 mins, legs were incredibly weak/numb and I felt VERY unsteady when walking – seems I’m more unsteady when turning left than right.
I should add that I do have a couple of health matters that are likely impacting, which are 1) TMJ and 2) areas of muscle wastage in lower extremities and slightly awkward gait due to hip problems, these have been present since birth and were operated on ca. 1991. Point 2 has never been a cause for leg weakness (outside of the already known) or unsteadiness prior to 2012/3. Regarding TMJ, I’ve been grinding my teeth for a number of years and this impacted my bite, my jaw also clicks – and seems to make my symptoms worse! I wear a night guard to protect my teeth, however, have been advised by an orthodontist to seriously consider corrective surgery to push my lower jaw back.
So there you have it – something from the above (or all) is likely contributing to the downfall in my health, more so since 2013. I had no idea that MAV was even a thing until a couple of weeks ago, and feel somewhat reassured that others (sorry guys) experience a lot of the symptoms I do. What’s clear is that I don’t suffer from acute migraines that debilitate me for hours (like a lot of people here), instead, I suffer for days/weeks on end and then improve for periods. I also don’t experience spinning sensations, I just get incredibly unsteady on my feet – being pulled back/down/left/right sensation, as if the floor isn’t firm, struggle to look at the sky/to the side when walking, areas of numbness/tingling on legs during flare ups, have to really focus when taking each step etc. Oh, and before I forget, alcohol seems to help ease symptoms and keeps me steadier when on my feet, not so much at the moment, but usually it helps rather than hinders.
These are the steps I’m taking to improve my current condition:
- Back on the meds – which I’ll increase to 240 MG per day (previous dose).
- Follow Dr Surenthiren’s guidance on diet (I do see noticeable impact when eating dairy, chocolate and even poultry). Have also tried to go gluten free as best as I can.
- Start taking Magnesium and CoQ10 supplements.
- Exercise – I force myself to do a short 15 min walk on most days (in a quiet place) with my dog, I use him as a counterweight to keep my balance (poor guy). I also do a 25 min (reduced from 45 mins since last week) core workout at home 6 days a week.
- Get better at managing stress – through CBT/therapy etc.
- See Dr Surenthiren and hopefully find a better course of preventative action.
- Replace my OTC mouth guard with one that’s professionally fitted (dog ate previous one), as I’m sure the do it yourself one is making me feel worse.
Would really value any thoughts/comments and reassurance that I’m not going mad!