I’ve not been diagnosed (awaiting blood test results) but am currently experiencing a prolonged period of dizziness. I’ve had bouts of dizziness before that have come and gone but this is worse. It’s been over a week now, although the sensation varies from hardly noticeable to ‘stop the world spinning, I’m feeling ill!’
It seems worse when I’m hot e.g. after a shower or washing up in hot water for any length of time. I seem very dizzy also when sleepy, going to the toilet during the night or having just woken up in the morning. Possibly also after eating rather than before - maybe that’s a body temperature thing?
It’s like my eyes aren’t keeping up with my head turning, there’s a small time lag. Nodding seems to cause a worse spin that shaking my head. It’s making me feel really unsteady. I also have tinnitus, which is getting more noticeable.
How do people cope with this? I feel slightly unsteady when walking though nobody has said I’m walking funny, even though it feels like it. The only thing I can think of is to give myself Reiki (it does help lessen the dizziness)…but usually that’s when I have the chance to get some peace and quiet for half an hour. Not often at the moment. What can I do during the day?
I see my GP again in a couple of weeks. He already mentioned the possibility of seeing an ENT specialist about this symptom. At the moment though I’m looking for ways to cope and some reassurance.
Hi Reikiblossom. So sorry to hear that you’re experiencing this. It is absolutely hideous. Before I was officially diagnosed with RR MS, I experienced an episode of this myself. I was prescribed Prochlorperazine Maleate, brand name ‘Buccastem’. It worked brilliantly for me and was a God send, as far as I am concerned. When I was officially diagnosed in June, I mentioned to my MS Nurse the ailments that had befallen me in past years and this is, apparently, a classic MS symptom in some people. Personally, if I developed the condition again, I physically could not/ would not wait two weeks. I would be asking for an urgent appointment and requesting Buccastem. Hope you feel better soon. Would love to know how you get on. Best of luck x
Sorry, Reikiblossom! I forgot to mention that the diagnosis I received at the time was Acute Labrynthitis and so I was prescribed Buccastem. x
Thanks, Tracyann. If it lasts until I see the GP, I’ll be asking for something, even though I’m one of those people who tries desperately not to take even just a paracetamol unless I have to. Luckily, the room isn’t constantly spinning, just a bit floaty, like I’m slightly out of synch with things…but I’m worrying about having another reality-quake. Hate being so dizzy I feel sick. For now, I’m just attempting to take it easy.
Reiki Another of those ‘snap’ moments. That’s how this all started for me and I was given a stemetil (like tracyann) and it did work. Not 100% but it eased the symptoms Worth maybe giving it a go?
I’m yet to be dx, but I have had imbalance (what the ‘experts’ call disequilibrium!) and dizziness on and off in varying degrees for many years. I have been investigated by ENT who confirmed this is not being caused by my ears.
It’s interesting to hear that this can be a recognised MS symptom. I am at the stage now where I can’t stand up without leaning on something, and find it difficult to walk without holding on to someone.
I have loads of other symptoms (tingling/numbness, cognitive issues, shooting pains, heavy unresponsive leg, trembling, twitching etc), but this, along with constant fatigue and a recent onset of blurred vision (confirmed by my optician that this is not being caused by my eyes) are making me more and more convinced I may have MS.
Have my first Neuro appt in 3 weeks following an abnormal brain MRI, so am bracing myself.
Reiki - I really hope your dizziness subsides very soon. It’s not a nice thing to have to live with.
Hi Reikiblossom! When you’re presenting with these symptoms, it’s very difficult to do anything and I admire your reluctance to take medication, unless you really have to. Before all this s$%**, I was exactly the same. My body is a temple and i hate that it is being ravaged by this alien invader. Unfortunately, MS has introduced me to several unwelcome guests; none of which can be effectively removed from the party without a little persuasion. If I can persevere without medication, I will, but sometimes, there is no suitable alternative. Just take things very easy and slowly. Purpledot- I went through exactly the same. I was working at the time and in hindsight must have appeared quite a sight, because I spent all the time clinging to walls, as I attempted to manoeuvre my way around my work place. I don’t ever want to experience it again. Good luck all xx
I’ve had this too and it was awful first time it ever happened it hit me at work and I passed out with it then was signed off work for 3weeks with what I wasttold was labrynthitis but now I wonder. Stemetil did help and you can get buccastem over the counter at a pharmacy if you want to try it otherwise just take things slowly and avoid sudden head movement A xx
Well, I’m still dizzy, despite having been prescribed Betahistine Dihydrochloride…and I’ve nearly finished the box. It is supposed to improve blood flow to the inner ear. After a busy but happy weekend, I hit the middle of this week and started to feel worse again. My bloods all came back clear and I’ve a neuro appointment in November. I’ll persevere with one more lot of BD but I don’t think they’re doing the trick. I try not to move my head around too much or too fast, if possible. At times, I’m unsure of my balance when just standing so find something to lean against. And recently, I always hold onto the bannister when going up and down stairs. Feeling a bit down about not being able to trust my own body. Oh well, next step is an opticians appointment in a few days to check my wobbly eyes. That’s not helping the dizziness.
I was diagnosed with ms last month. I have problems with dizziness/balance so know how you feel. Dont like going out on my own…feel like I’m on board a ship. I’m assuming its something to do with the brain lesions. No medical person as yet suggested any medication. Hope you get sorted. x
Thanks Blossom. Infact, when my GP prescribed it he actually said that Neuro’s don’t think it works (presumably because its a nerve problem rather than a blood flow one). I’ll get a re-prescription once but if it still isn’t helping, back to the GP. Hope you get your sea legs soon, Blossom…or at least find ways to manage it. All the best x
Hi reikiblossom. I was prescribed betahistine when I saw gp with dizziness - exactly as you describe like a time lag in my eyes. It didn’t do anything for me and when I saw neuro he said he wouldn’t have expected it to work. I have lesions on my cerebellum which apparently is the balance centre. My ms nurse recently faxed my gp and asked him to prescribe stemetil (prochlorperazine). I’ve been taking it for a week and can’t say if its helping because I feel absolutely dreadful at the minute. I keep having spells where a cold feeling floods the left side of my body and I feel as if I’m going to pass out (actually I feel as though I’m going to die - it’s hideous). I don’t know if its side effects from the stemetil or from the rebif or gabapentin that I’ve also just started. Hope you get some relief soon. I know how awful it is 
xxx