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Waves of weirdness

Does anyone else get this? I have what I can only term “waves of weirdness” that come over me sometimes. It can feel a little bit like my blood pressure is changing, like when you stand up too quickly. These waves were accompanied by slight speech slurring the last couple of days - thankfully this seems to have abated - but the last few weeks, they seem to go with slight pain sensations in the left side of my face. This is still ongoing and is rather irksome. It’s just strange that these things come and go without any apparent trigger. Does anyone else get similar “waves”?

Hello,

That sounds quite disconcerting-especially because of its random nature. All I can say is that over the last few years, certain symptoms have “visited” and then gone. Tingles in various bits of me, stabbing pains or dizziness have also been rather irksome. I hope your “irks” can disappear as mysteriously as they came.

Best wishes, Steve.

Hi Lapwing, yes I do have something like that and have been having it for some time.

It comes completely unexpected… doesn’t seem to be connected to anything, but I feel a sort of ‘whooosh’ in my head and one side of my face feels strange. I feel sure I am having a stroke. I then feel very weak. I call it ‘meltdown’ although it’s only one kind of meltdown… I do have other types.

I don’t know what causes it but it certainly feels like a sudden drop in blood pressure. I do get the slurred speech with it as well or that thing where you’re talking and it turns into gobbledygook.

If it’s any comfort, I’ve been having these for a few years and have never had a stroke and always made a full recovery.

Pat xx

Hi

I don’t feel like my blood pressure changes, but without warning I feel just as though I have hhit a brick wall, and am left with an unbelievable feeling of weakness, whereby am unable to do anything.

Pats choice of words being meltdown is a perfect description, I assume its another ms thing, and I rest until it passes.

Wishing you all the best.

Pam x

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Pam, yes that’s the other kind of meltdown I get. Read somewhere it described as ‘someone pulled the plug out’… and that’s it isn’t it? Every tiny bit of energy drained from your body.

Found them frightening when I first had them and they still sometimes make me think that I’m dying. All I can do is concentrate on breathing.

There are SO MANY things that we get with MS that you never read about and the neuro’s don’t even seem to know about!!!

Pat xx

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Pat - that’s amazing - it sounds like you have the very same thing! A sort of “woosh” in the head is a great way to describe it! And sometimes it does feel like my energy is disappearing into some kind of vortex around me and being sucked into outer space. Like a passing alien has chosen me to tap into, as an emergency power source to boost their battery packs. Okay, I’m getting carried away now. On the one hand, I am sorry to hear that others have these sensations, but in a way, it is a relief that I’m not the only one. Yes, Pat, you’re right - sometimes I think that MS really needs to be experienced to be understood. Not that I would wish it on anyone.

Anyway, I’m glad we’re battling. It may be a rough ocean, but we’re grand sailors!

Thanks all.

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Yes Pat, that’s it, just as though someone has pulled the plug. Thing I don’t like is not getting any warning at all, scary sometimes.

Its only other people with ms who can possibly understand, so whilst you. Wouldnt wish it on anyone, its a relief that someone knows what you are trying to explain.

Hope you are OK.

Pam x

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I get this too but im still waiting for a diagnosis, its like my head feels as if its caving in on its self and my brain feels like is melting and turning to mush, its so hard to discribe, my mobility isn’t good anyway but when this happens my body feels like its turning to treacle, i get even weaker and everything is so much worse, cognitive , eyes, speech its so weird.

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Hi Pam - it does feel good to be understood at last!

Thank you for your support!

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Hi I’m new to this forum chat but just wanted to say thanks as reading posts here makes so much sense :slight_smile: I have ppms and have roughly had it 16 yrs but only diagnosed in 2005 after many visits to the gp I am very intolerant to medication and even the ms specialist struggled to prescribe anything for me as either it does nothing or I am unable to function, as I have kids this is not great however I recently saw the chronic pain clinic and they prescribed palexia for my pain and it is brilliant although I still suffer spasms and tremors I can cope as pain now minimum, here hoping one day we may see a cure :slight_smile:

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Hi Nikkytam

Welcome to the forum, lots of lovely friendly people here, always willing to listen if you need a rant, or offer advice when they can.

Look forward to seeing you on the boards.

Pam x

Hi Nickytam and a big welcome to the board

I’m so glad you’ve got something for the pain!!!

Glad you found us and hope to get to know you better. This is a very supportive gang! You’ll never have to feel alone with your MS again.

Take care and Happy New Year,

Pat xx

Hi Nickytam,

Welcome to the board, I’m glad the chronic pain clinic were able to help you!

Hope we see you on here again soon.

Best wishes and a Happy New Year

Nina x

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Hi welcome to the forum Nickytam.

there some great peeps on here,always ready to help.

J x

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Pat i have spoke to you before about the meltdowns i get and i put that it was like someone had pulled the plug,mine are very similar to yours, they are not nice at all,and all we can do is wait for them to pass.i just cant function very much at all when they strike,i have to be on my own and lay down in a quiet room,i told my ms specialist and he thought it might be a type of migraine with NO headache, i googled it and must say it does seem like one.i didnt know you could get a migraine with no headache lol we learn somert new every day dont we ?

J x

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That’s interesting Mrs J.

When I was a teenager I regularly had bouts of vomiting all night. No obvious reason. It was years later that someone told me it was probably migraine… called ‘silent migraine’ when there is no pain.

I don’t know what causes the meltdowns but they are very weird and really quite scary.

Pat xx

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yes thats interesting too my mum used to have sickness do’s every so often and 'auras ’ i have always had migraine type auras,flashing lights and half my vision goes sometimes with head pain and sometimes not,and they say the patterns of your migraines can alter with age.

J x

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People keep telling me I’m weird but that’s a different matter!! Physically I feel sometimes like I’ve been winded, breathless,dizzy,disorientated, sickness & urgent need to sit or lie.

Pauline

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