I know reading up on the symptoms of APS that problems with balance seem to be an issue. Can anyone who experienced it share how they felt. Mine came on literally overnight. I had a migraine one day, the next I started feeling off when I walked.
Its really hard to explain to anyone unfamiliar with the sensation but its not dizziness or vertigo, there's no spinning either of myself or the evironment. Its just a constant sensation when being upright or walking off not being right, of a sensation of being a bit tipsy, or swaying. Almost like I'm too aware of my own motion.
Mine has got better, when it started just over 2 years ago it was very incapacitating, but its never gone away and I'm very aware of it. I've seen a neurologist, ENT and had sessions with vestibular physiotherapist for rehab and nothing has helped. I was interested in whether anyone else had experienced this?
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Sparklingsunshine
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Sorry to hear of your balance issue. Interesting to hear that this is an APS symptom. I'm experiencing this periodically too. It's a bit disconcerting to momentarily lose control of staying upright. I'm surprised to have this problem as I've been doing balance exercises for a long time and can manage them well, yet occasionally lose my balance, or walk a bit precariously, as you say, a bit like being tipsy!!I would be interested in more info about this and how best to manage it as well.
My balance varies, 1 day I'm OK another I'm 'off' I do pilates classes and she works on balance, when I have a 'wobble ' I've put it down to 'age' so hearing APS could be a reason (which I have, ) explains that might be the reason.
thank you for your wonderful description of that sensation. it took me months and many doctor visits to finally get me to the vestibular therapist that helped me. it sounds like you've been that route and it hasn't helped. i'm sorry for that and wish you the best.
it is so important to be able to describe these experiences so the problem gets addressed. many appointments later, i finally got help from an audiologist. after thoroughly probing it as an ear problem, he took one look at how i walked and sent me to the vestibular therapist who was able to help me. i know that if i had been able to describe the experience as well as you have, it would have saved steps along the journey. i want you to know that i will be including your description of this very puzzling symptom in a consultation with a new neurologist i am seeing tomorrow.
this is not to say that it never happens anymore. it has decreased in severity and i know the steps to take when it feels worse. i'm glad that you too have been able to see improvement in this symptom over time. i know that it is very disorienting and just takes up too much space in one's head. i hope that you find a solution that brings you further down the path.
The problem is doctors always assume you are dizzy and I've never had dizziness with this. I have experienced occasional dizziness in the past, usually when standing up too quickly or if I've turned round too much.
I'm always careful to emphasise that when I'm laying down or sitting I'm fine. Its when I'm on my feet that the problem starts. I know the difference between being unbalanced and being dizzy. My husband had labrynthitis a few years ago and was very dizzy and nauseous, so much so he could barely move. I've never experienced that.
I've been tested for Menieres, BPPV, BP changes. I have no hearing loss or issues with my ears. Eventually they settled on vestibular migraine but I've never accepted it. VM tends to be episodic not constant and people often experience nausea, aura, tinnitus, dizziness. I go get migraine but I've had them since 16 and never had any dizziness or balance issues. It seems to me they took the fact I get migraine, plus balance issues and made 5.
Additionally I tried 7 anti migraine meds and none worked. If it truly was VM I'd expect at least some improvement from one of them. It wasnt until someone on my thyroid forum mentioned APS that it rang some bells.
oh my-no one can say you didn't do your leg work with this! i wish you all the best in finding someone to help with this symptom. it is bizarre and weird, and so much worse when you can't describe it in a way that makes sense. your experience has helped me quite a lot and i am so grateful. i hope something equally helpful finds its way to you.
Thank you, here's hoping. I'm a pretty proactive person lol and something of a rebel so not in the habit of just accepting whatever doctors tell me as though its a prouncement from the Almighty 😀. I question everything.
I have bad days of dizziness, always have had for years, but now mine is a bit confused with the TBI I had, however I have more good days than bad. If it were to be unmanageable I would go to the GP. MaryF
Unfortunately I feel I've exhausted their care. They seem to agree with the Neurologist that its vestibular migraine. I spent nearly a year on low dose Venlafaxine, which did nothing for the balance issues. It did make me nauseous every day for 5 months however. I weaned myself off it as it wasnt helping. Venlafaxine was the 7th anti migraine medication I'd tried.
Unfortunately having EDS means I'm very sensitive to meds and have had a lot of issues with side effects. I dont currently take any meds for migraine and finding effective pain relief for EDS has been a real problem. I find the NHS severely lacking when it comes to complex chronic illnesses.
I feel you. Ive given up and manage myself for my PSA and my Cerebral APS my brain is co stanly worsening and my worst effect is my friends who I think I trying to empathise saying oh yeah we all forget things they don’t realise I don’t remember anything. As to the dizziness I checked my ‘medical notes’ and I reported it to my GP around 24 years ago but it was just dismissed and never treated. Neurology don’t want to see me at all as they say can’t help was referred to Queens Square in London and they dismissed me with well it’s not ‘degenerative’ so not Alzheimer’s or dementia they said do good news but can’t tell me what my mental decline and other neurological issues is due to. The list is endless I now get severe pains along with me ‘whirling round’ so not dizzy and it’s not the room spinning. I think I am just very adaptable and find a way but with my head issues and leg and feet issues I am mainly in a wheelchair so only fall over at home. I truly admire your tenacity and salute you keep on the good fight
Hi I also suffer with balance issues,I myself used to say dizzy to the doctor's but since being diagnosed with APS and hearing people say balance issues now that's what I call it ,I describe it as the ground just moves a little under my feet which straight away makes me anxious,I work in a shop and it's hard because sometimes I feel like I'm wobbly and I have to hold on to the shelves I can't really stand in the one spot for too long it makes me unstable.sometimes if I'm sitting on the couch I get a sudden feeling of like as if everything is draining from my head down and I'm about to fall even though I'm sitting down.Its always really hard to explain.I have more good than bad days too but I have missed a lot of work because of it.waiting to see a neurologist still , waiting over two years now.Hope you get to the bottom of your issues.x
I liken mine to walking on a trampoline or marshmallow floor. Your feet or the floor feel a bit spongy. The technical term is dysequilibrium. Its a weird sensation and hard to explain. APS cause neurological symptoms like brain fog, memory problems, pins and needles, even speech impediments.
Yes , I get a lot of brain fog 🥴it's just a pain in d arse cause ya never know what way you'll be feeling,also when it's near my time of the month im always a lot worse.migraine and balance issues , stomach issues.I was diagnosed after my miscarriage and clits followed that.
You must have a diagnose of APS and if so see a Specialist who knows what APS means of course. We usually have too high INR and very sticky blood that has to be carefully thinned. Read about this illness so you know what APS means. Some of us have triple positivity (three antibodies) and also high titres.
I am sorry but I have not understood if you have got a diagnose of APS? That is of course the number 1 issue. Second is to have a Specialist who works with people with autoimmun illnesses like APS,SLE, Sjögrens, SA etc etc every day. Often it can be a Hematologist or a Neurologic doctor.
Third issue is to learn as much as you can about APS as so very few Doctors know about it.
There are some good books about APS. I have 8 here in Sweden. Bought 10-15 years ago perhaps. Those from prof Graham Huges cost a lot here but that man knows what APS is !!!
Kay Thackray should be possible to buy over there. "Sticky blood explained". She writes about how it is to have this illness. We are all unique and have different symptoms.
She had a lot of neurological symptoms like me. It is also good for relatives (if you get a diagnose) to understand all those wired symptoms you get from so many different parts of your body. So read about it if you get a diagnose.
I believe what you're describing is called disequilibrium, like the feeling that you're falling to one side. I experience this too, and mine will come on suddenly out of nowhere, followed by severe brain fog and a very mild headache. It's gradually getting worse over the last few months and starting to last longer when it happens. I am scheduled for a brain MRI next Friday, and referred to Neurology. Here's hoping for good news. Hoping you find some relief as well!
Balance issues are so frustrating. I have found that mine seem worse when I first wake up or get up in the middle of the night or bend over. My GP told me it was vertigo and it is not vertigo! I recently reduced my blood pressure mediation and it has helped considerably, but I know exactly what you mean. Do you have any blood sugar issues?
Your post could have been written by myself. I have exactly the same issues with balance and even have to hold onto something when looking up or I'd keel over. Difficult to describe, but some days are better than others. I'm safe indoors, but outside a walking stick is useless so a couple of weeks ago I reluctantly bought a three wheeled lightweight rollator. Best thing I ever bought.
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