I urgently need your advice folks. I’ve been diagnosed with PPMS since June last year and downwards progress has been slow but steady with walkin ability slowly getting worse. We’ve managed to cope with this b****y condition so far but now I’m really worried that this current phase will not ease off…
For the past few weeks I have had a constant humming/buzzing in my head and for the past 36 hours my world is spinning. So much so I had to call our GP practice for help. I am staggering all over the place. My balance is completely shot. It seems its my head that is spinning and not the room. My oh is so worried. I hate causing him even more worry as he does so much for me already. I have lain in bed except for going to the loo. Every time I move my head it seems to make the dizziness worse. I am typing this much slwer than normal - oooops I mean slower than normal. I don’t feel nauseous or sickly and my thought processes are normal. As normal for me that is! The practice nurse visited in the afternoon and prescribed prochlorperazine buccal. This seemed to lessen the spinnin but its still very much alive and kicking!
I wondered if this could be part of my MS as we’ve tried to eliminate other known causes. Has anyone else experienced this or know anything about it as a symptom of MS?? I’d be very grateful for any responses.
I had that back in 2013 when I was diagnosed I had it for a week then the constant nagging headache the docter gave me two or three differant meds witch did nothing the the headache went hypo got to see docter who sent me to hospital with a
Suspected anureism after numerous mri and ct scans they put me on a anti convulsing witch helped refer me to neurology
After more tests they base me three days with of steroids win final got the better of it the neuro came to see me while I was having lunch on the last day and slipped into the conversation that I had ms ,I was in denial for more than a year .
Sorry for talking rubbish Annie occasionally when I have a bad day it comes on but doesn’t last long I take pregabalon for
It ,it’s seemingly caused by damaged nerves at the back of my head ,hope you get it sorted soon
For your comment. No, you’re not talking rubbish - so don’t worry. I am able to understand what you mean about the dizziness and naggin headache. I’m already on pregabalin so perhaps it not quite the same as your wee self.
I just hope this goes away on its own because right now this is so debilitating as I’m so unsteady on my already poor walking because of weak muscles and tightness in my legs.
Further to what I said a while back my pregabalin prescription changed from lyrica to generic pregabalin within a few days off starting it I was back to where I started those years ago after words with gp I got back to lyrica now all well again so iether they gave me a placebo or the generic pregabalin works in a differant way I notice other meds are seldom the same brand twice running.
Thank you for directing me to the article which I have just now read and printed off as a copy. I really was not aware of this blooming symptom till now. Or maybe I ignored it in others’ story’s. The article is helpful in explaining that dizziness is a common symptom of our condition.
I just hope that this will be a spell rather than permanent. I aim to read a bit more about coping strategies and take it from there - whatever it will decide it will be!!
Hi Bonnie Annie, I go through periods of horrendous spinning dizziness.
Believe it or not the best thing I’ve found that helps is root ginger (available in supermarkets).
Cut a bit about the size of your thumb. Peel it and cut it into chunks. Put in cup with tea bag but then leave it in the cup when you remove tea bag. I usually have 2 or 3 cups of tea with the same ginger.
It really does help. Worth a try!
One other thing, it freezes very well and thaws out quickly.
Thanks very much for your suggestion. As I usually have root ginger in the fridge for curries, etc and we love ginger I will certainly try this to ease those pesky circles in my head which are so disabling.
My dizziness has eased a fair bit now since Friday but I am left with more tottery walking. So onwards and upwards!!
It is so relieving to hear that others have the same symptoms although I wouldn’t wish it on anyone if you know what I mean. Symptoms are very personal to each of us with this MS world.
I honestly don’t know what I’d do without the folks (Anthony, Hillybilly, etal) who use this forum and the others related to MS. An anxious wreck maybe!
You might find drinking more water will help - and also take magnesium. This is what l do when it happens to me. l keep off all the prescription meds and take only vits and minerals.
But l do know that if l get the ringing in my ears - it is because l need more water and magnesium. l have low blood pressure which makes the symptoms worse. But a good drink of water usually sorts it out. l try to drink at least 2 litres daily. Tea/coffee and other caffeine or alcohol drinks do not rehydrate - they do the opposite and are diuretic.
Thanks for responding. Perhaps there’s something in the dehydration and lack of drinking water. I drink plenty fluids over the course fo the day mainly made up from tea and low sugar drinks.
But, Oh dear! I can’t live without me daily tea fix starting with the early morning cuppa made by my OH and rose (red) bush tea in the evenings. Coffee I can live without except when we have visitors when I do the meal and coffee is necessary afterwards! The trouble with drinking extra water would be that I don’t know when my bladder is full and have trained myself to go at least every 4 hours during the day. I worry that I may have “accidents” if my bladder needs more frequent emptying. Something I need to think about now that you have mentioned drinking more fluids/water.
I’m afraid too that I have high blood pressure for which I have taken meds for years. I need pregabalin (Lyrica) for nerve pain and take quinine for cramps. I also take tramadol and paracetamol for pain at night and when necessary at other times. I also suffer from fatique - this affects me all the time. Fighting it is an ongoing battle, sometimes giving into to it and resting up.
I hope I don’t sound as if I’m making excuses, perhaps I am! You’ve given me lots to consider. I’ll take on board what you say and see if it could work for me. Sorry if I’ve given too much info as a response to your advice. Please forgive me. It’s late and sometimes I get a tad hiper when I’m tired. Talking too much.
Hello Anne, ive not felt well myself this week, i think stress always makes anything im suffering worse. For years iv’e had episodes of extreme dizziness and vertigo sometimes with sickness and ringing in my ears. Every ones advice is very good, I hope that you feel better soon.
I was intrigued by a mention of magnesium last month and bought a bottle from Sainsbury’s. When they ran out I didn’t replace them but soon developed agonising leg cramps at night.
I got another bottle three days ago and have the best nights sleep in over a week. For the first two days I took a double dose.
Red Bush tea is great - as it is naturally caffeine free - so do keep drinking it. By drinking more water you will ‘dilute’ your urine - and this means it is less likely to irritate your bladder. And also more water will help train your bladder to hold more.
Too late for me - l lost all control of bladder and bowels when l first started with PPMS - and that is 34yrs ago. l ended up having a SPC - which is a lifestyle changer - rather then a lifestyle clanger!!!
As you have probably read - l do follow the Biotin and VitaminD3 protocol- in huge amounts - and many people on the 'Biotin for Progressive MS ’ have found it has turned around their bladder problems. lf they need a blood test - they have to stop the biotin for a couple of days because it messes up the thyroid results. And in that short time their bladder plays them up - and they can’t wait to get back to it. For most- if that is the only benefit for now - then it is worth taking. Vitamin D3 will lower blood pressure.
Apart from all the vits/minerals l take l also drink Apple Cider vinegar. Tablespoon in a tumbler with cold or hot water and a teaspoon of honey. lt neutralises the ph in your urine - one of many benefits from it.
lf you are able to get into a bath - then put a handful of Epsom Salts [magnesium sulphate] - Magnesium is easily absorbed through the skin - which is why many people prefer using the magnesium oil - as some of the tablets are very laxative. Magnesium Citrate is the one if you are constipated.
l even put Epsom Salts in my ‘hot tub’ - about 5lb - each time we change the water - still use the chlorine tabs but not much of it.
As l have not been able to get into a bath for years - only shower - l was amazed to find l could use the hot tub when we bought one.
So l can now ‘get my leg over’ once again. [Bet that bit if info made your eyes boggle, Marty]
For your understanding comments. The dizzy spell has settled now and I’m almost back to “normal” whatever that may be!
Say hello to Frazer for me. I’ve followed your blog on recent events and as other folks was sooo relieved that he made a full recovery and is back home where he belongs - with you.
Thanks too to all those who took the time to give me advice and understanding. I don’t know where I’d be without this forum. This may be a tad gushy but it is sincere.
I use magnesium spray on my legs if I get too much stiffness
With ataxia & nystagmus I’m quite prone to getting dizzy or just clumsy…my husband had to fetch my glasses from the lawn the other day because I hit my face on the window frame when I was throwing some food out to Cyril (the squirrel). I’m slowly learning to just be more careful - it’s really difficult to suddenly ‘unlearn’ what you’d normally do
It feels like everything is new so my only advice is to go careful, I’m a shockingly bad example of what that is which explains the bruises on my hands, arms, legs etc.