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Unsteady, Weakness, Numbness - My story!


#1

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:

  1. Back on the meds – which I’ll increase to 240 MG per day (previous dose).
  2. 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.
  3. Start taking Magnesium and CoQ10 supplements.
  4. 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.
  5. Get better at managing stress – through CBT/therapy etc.
  6. See Dr Surenthiren and hopefully find a better course of preventative action.
  7. 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!

Thank you.


#2

Well, if your written text is anything to go by. You are not going mad. A more sane, together body (apart from me!) who’s suffered this dratted afflication for so long, would be impossible to find). Congratulations- what’s yr secret?

I LOVE your post. Impressive. So well written and concise. Good good synopsis I would like to - stuff down the throat - oh! sorry, got a bit carried away there - distribute to all the medical people who refuse to believe in MAV and/or those who write it off as ‘insignificant’. I’d make it compulsory reading for all UK ENT consultants, and probably then wake them up in the middle of the night to take a test in it, just to make sure they’d taken it on board. Resentful, me? No. Who dared to suggest…

Sorry you have had to come here but Welcome to my World. I’ve been in it even longer than you. We have so much in common. Mine kicked in earlier, in 2003. We are both taking PP. You are lucky to be able to get to DR S, he’s The Expert in UK from what I have seen. I would be so very interested to know what he suggests to you. You seem to have it all pretty much sewn up already. Guessing previous exp. and the internet plus your obvious natural good sense got you there. Amazing, we MAVers have to be our own advocates totally. There’s virtually no other help for it. Don’t really know why the UK bothers part training so many medical folk.

Cannot really add much to yr own self prescribed plan of action. Looks good to me. I think sometimes the timing of various interventions can be crucial. Take yr printed out list with you to Dr S for comment. I’m no medical person but I’d imagine the alcohol will have to go.

Looking forward to yr next instalment. May seem perverse but it quite cheered me up to find yr post this morning. Not a good day with me today. I’ve got what I call ‘concrete’ knees today. It feels as if my balance is being run from my knees and they are filled with setting concrete and don’t have their usual flexibility to bend as I walk. This is a newish sensation to me, just the last couple of months on and off - ah, the continuing joys of MAV, eh.


#3

Well, I’m always sorry to see a new member here, but at the same time glad that you found us and especially glad that you found Dr. S’s name from the recommendations here and that you have an appointment with him!

  1. Print your entire post, take that with you to Dr. S., and ask him to read it when you first go in to see him. It is very complete and well-written and the reason I suggest this is that it is SO easy to go into a doctor’s office and forget to tell them this or that. You will be providing him with a complete, easy-to-read summary that he can then keep and add to your file in his office.

  2. Early in your post, you describe “unsteadiness.” But it’s not until the very end that you describe it as “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…” If that describes your unsteadiness going all the way back to 2007, put that in at the beginning (of the document you print and take to Dr. S.) That will give him a better idea of what you have been experiencing since the beginning. (I admit that when I first read your post I wasn’t at all sure that what you described as “unsteadiness” was what others here have experienced. But your more-detailed statement near the end definitely does describe what many other MAV sufferers have.)

  3. It’s interesting that you’re starting to experiment with diet and you’re seeing some results. Check out my post in this thread: https://www.mvertigo.org/t/diet/14992 This is one of our “Wiki” threads, which many of us helped build. Look at my post in that thread. I included a number of different “migraine diets” that I had found from reputable sources on the Internet. Some of them are much more extensive than Dr. S’s list. And some list foods that fall into one of two categories: “tyramines,” or “histamines.” Who knows, you may be sensitive to foods that fall into one of those categories. Something to experiment with.

Good luck with the appointment and be sure to let us all know what he says. There are many people on this forum who have been fortunate to see Dr. S. and they have all had good things to say about him!


#5

Hello.

Really appreciate your incredibly kind words, I’m sorry you’re not having a good day (I feel your pain!) but am glad you enjoyed my post:) I also get a strange sensation in my knees at times, more so they make me feel like they’ll give way! Completely agree that a lot of ENTs (and Neuros) are oblivious to the connection between migraine, balance, weakness etc. I’ve been told a number of times that there’s nothing wrong with me - so clearly I’m just imagining the symptoms right!?

What dosage of PP are you on ? And what were your first symptoms in 2003 ?


#6

Hey Manatee,

Thank you so much for the advice. Regarding the unsteadiness, it certainly wasn’t as bad in 2007 … it almost felt more like the rush you get from standing too fast ? The more intense feelings came on ca. 2011-12, and then accelerated early 2014. I’m going to amend my post slightly and then print it out, I’ve lost count of the number of times I’ve walked out of an appointment then remembered a key detail! I’ll review the link to the diet you’ve mentioned (thanks for sharing) and keep you all updated post my consultation.

Thank you!


#7

Just imagining the symptoms right? If they’d said that to me, I’d feel flattered. I’ve often wondered how people write novels. How on earth did JK Rowling write all those Harry Potter books? I have no imagination whatsoever. I could never have imagined a condition like MAV. IT’S SO WEIRD you couldn’t make it up if you tried. Well I certainly couldn’t. When I first went 24/7 dizzy GP offered me something for ‘anxiety’, said it would make me happier!

I’m on 180mg PP taken 60mg x 3. Not a long acting type.

MAV symptoms morph constantly. In 2003 my very first attack was very short burst of vertigo. The TV appeared to levitate. Only lasted a couple of minutes. It was true vertigo (i now know), either you or the room appears to move. Bouts worsened then it would be true spinning vertigo lasting 24-72 hrs, unable to open yr eyes, unable to walk to bathroom without the aid of the wall, V&D, much like migraine without the headache. Later bouts would keep me in bed (no balance, unable to stand unaided) for usually 8 days by which times I had balance issues between attacks (ie, when the car stopped, I’d feel as if I hadn’t) and bouts gradually included head/ear/pressure, light, smell and sound sensitivies. December 2014 After another bouts I noticed I was 24/7 dizzy.


#8

Tell me about it, when I’ve tried to explain my symptoms to friends, I get a puzzled (almost dismissive) look! Where are you based ? It’s such a shame that the pool of ‘specialists’ is so small - and I’m certainly not counting my chickens re. Dr S, read great things but don’t want to set myself up for (another) fall.


#9

Hi, oh, I think the definition of a long-term MAVer could well be somebody who never bothers to try to explain their condition to anybody who hasn’t had at the very least had a bit if BPPV. It’s a complete waste of valuable breath even to try unless it is essential. Obviously any SO and immediate family needs some sort of understanding. With the rest of the world, try ‘I suffer from a migraine related balance disorder’ or something like that. You can then leg it whilst they look puzzled trying to work it out. Works every time.

Yes, the pool of specialsts in UK is tiny. A puddle rather than a pool but I think, from what I read, DR S is almost the best, if not The Best. Don’t write him off. There’s an article on the Guardian website, under Heath and Wellbeing by Lucy Atkins entitled ‘Spinning out of Control’ you might find interesting.

Laughed at the chicken mention. Read somewhere on line one MAVer said they’d be happy to wear a chicken on their head if it controlled it! I’m in the West County.

Oh, don’t fall whatever you do. Since the MAV kicked in 24/7, I managed to take a dive over a bramble that was posing very effectively as a tripwire and smash my shoulder . NO fun that. They decided to let it heal by immobilisation, using weight of my arm to keep it in place. No plaster. Just had to keep it totally still for 6-12 weeks, they said. Wasn’t even supposed to lie down to sleep. When I told the orthopaedic consultant about the MAV and explained the strap around my neck bearing the weight was causing me to be more unbalanced than ever as it was constantly puling me forwards, he looked completely blankly at me, and, like a stuck record, just kept repeating “that has to stay there immobile for up to 3 months, maybe longer!” So, no falls please. I guess the moral is only to get one illness at a time!


#10

I wouldn’t even put the word “migraine” in there. Just say “I have a balance disorder.” As soon as you say the word “migraine,” that’s all people hear and they say things like, “I get migraines too. Have you tried Excedrin migraine formula? It’s the best!” and then you’re stuck trying to explain that it’s not quite the same thing.

So, for example, I live in Florida so non-Floridians seem to think that we all go to Disney World every weekend. I’ve found that if I say “I have a balance disorder and I can’t ride roller coasters any more because there’s a chance that it will make me permanently dizzy,” that seems to satisfy most people. If they pursue the subject sometimes I’ll add, “And sometimes I feel like I’m riding a roller coaster when I’m just sitting in a chair! I don’t need to go to an amusement park to get that feeling!” Then the subject usually quickly gets changed… :slight_smile:


#11

Hi

(a) you’e not going mad
(b) sounds like classic MAV
© Dr S will get you on the path to recovery.

I’m seeing Dr S for the 4th time in a couple of weeks. I first saw him in July last year and i was in a very bad way. he put me on pizotifen and in a fe days i started to see big improvements. the first 50% improvement came quite quickly. i would say I’m at about 70-80% recovered now; i’m currently still on pizotifen and gabapentin too.

i have had leg weakness and ataxia, although mine lasted for bouts of a few hours, not for days or weeks. but that was truly horrible and scary. haven’t really had any of that since i started the meds.

where are you seeing Dr S? Medway hospital, or one of his other clinics? he’s a good guy. take a list of questions to ask him, as you may be a bit overwhelmed in the appointment, especially if he does any tests etc.

re TMJ - people do report a correlation between TMJ and migraine, but which comes first etc, or if they are just unlucky to have both, is hard to say. i don’t know much about TMJ, but the rest of it sounds very familiar to me - other than the timeline. fortunately ive only had this for about 15 months.

good luck!


#12

Hello! Wow, that’s very reassuring and I’m glad to hear that you’re doing much better. Can you tell me a bit more about your condition when you first met Dr S vs now ? And also about some of the initial improvements you saw to hit that first 50%? It’s really encouraging to hear that you’re 70-80% recovered, so many times I’ve said to myself that I would be forever greatful if I could ever get to that level - I’ve accepted that going back to feeling ‘normal’ may never happen! I’m due to meet Dr S in June at his Harley Street clinic.


#13

Hi DizzyD,

Your symptoms are eerily similar to what I experienced 2 years ago, including bruxism, weak knees, unsteady ataxic gait, concern if I’d be able to keep my job (commute to it).
I have mostly recovered since then but not 100%. On occasion cold damp weather, strong wind, gaudy surroundings or witnessing human frailty as seen in cancer centers or nursing homes, can trigger some unsteadiness still.
My progress was possible without meds.
Diet was a tiny component.
LCHF did not really help much because i dealt with bigger issues.
Pre-diabetes was one.
To reverse bruxism I taped my mouth at night, far more effective than mouth guards. I worked on my breathing, made it slower, stopped breathing through mouth, at night especially.
I quit a stressful job and started a more fulfilling, less demanding, lower paying job.
IMO your resting respiratory rate and mental state are far more important than meds and diets.
Try taping your mouth at night to experience immediate diminution of symptoms.
This is a personalized suggestion based upon your symptoms.


#14

Hello. Thanks for the suggestions, completely agree that reduction of stress and better management of mental health makes a huge difference. I’ve not heard of taping the mouth before, so it’s interesting to hear that this worked for you. I try to avoid sleeping on my side to minimise any tension on my jaw. Glad to hear that you’re doing much better !


#15

Hi All,

Short update since my last post. I met Dr S on Monday and we spent over an hour together - he went through my history, symptoms and explained what a migraine associated balance disorder is. He felt that I displayed most of the classic characteristics, and whilst the lower extremities weakness can be attributed to the problems I’ve had since birth, the migraine is likely making it a lot worse. He has put me on 10MG of Nortryptiline (I’ll also continue propranolol for now), asked that I follow the diet and booked me in for a number of balance tests (13 July). It was incredibly reassuring to be told that the symptoms can get better, I’m not losing my mind and most importantly - not being sent home without a diagnosis. I’ve read some very good and mixed reactions to Norti, so I’m keeping my fingers crossed that I don’t react negatively to it. Will let you guys know how I get on after a month or so. Hope you’re all in good health !


#16

Oh, I wish! Good to hear yr update. Glad it went well for you. I read in a Guardian article on line DR S’s Clinic did a study and concluded most patients were 70% better 9 months after appointment. I’ve never had the good fortune to see Dr S but on meds I guess - and my SO confirms it as it must be right - I’m more than 70% better and it’s about a year since I reached the effective drug dose. Trouble is, I’m greedy. I want the rest, that other 30%. And really I’d like it NOW. Guess that goes for us all on mvertigo too. Still reassuring Dr S thinks symptoms do go away. Good luck with the Nori.


#17

I think after 9 months from the start of the acute phase, I’m at about 80%. I’m satisfied with that. I fear the drugs will lose effectiveness over time. I’d rather be mostly better and retain my ability to use low dose meds as long as possible.