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Newbie - silent migraine,ms or other????

Hi everyone, new to all this,not even sure if I’m posting in the right place. Anyway I haven’t been diagnosed with ms, although I have had loads of symptoms,like many others on here. I have read that there are lots of neurological problems that have similiar symptoms to ms and this is why it can be hard to diagnose and why it takes along time (very frustrating) I have had 2 episodes both lasting months on end, one 3yrs ago, nearly symptom free for almost a year and then started again afew months back. Both times doctors thought it was TIA, but both times after tests got told it wasn’t that (phew). Was told by a neuro 3yrs ago that he thought it was silent migraine (not sure any type of migraine lasts for months on end) I am now at a different hospital, and have been seen by a consultant,after seeing me twice he has referred me to another consultant for a second opinion as he is quite certain not a stroke, but still not sure what could be causing symptoms. I suppose my question is,has anybody else been diagnosed with silent migraine and later told it was ms or some other problem.

Hi Nat,

Welcome, just a possibility look at this http://www.hughes-syndrome.org/

George

i have never really properly investigated my migraines but have basically diagnosed myself with silent migraines for years. Also ihave them very rarely, just once or twice a year. But when they come they are crazy. Its just like having a stroke, My vision gets totaly cracked up, lightening bolts, disjointed , like looking through a kaleidascope, one side goes numb, tingling and the aphasia ( can speak properly) but if i take a paracetamol its all gone within an hour and NO headsche! so i guess this is silent. Its a very frightening experience even though its mow familiar to me. i didnt really associate it with MS though. Iam not diagnosed btw. I am not sure if any pf this is helpful or not. best Caro

Thanks George, I have never heard of that,however it did say it’s quite new. Had a quick look, and no wonder it makes it hard to diagnose anything,when so many things have similiar or the same sorts of symptoms. I was put on clopidogrel,like asprin (blood thinner) as my consultant wanted to make sure I wasn’t getting any clots. I have had a good M.O.T. MRI scans, ct scan, neck scan, heart scan, blood tests (awaiting results,one was lupus. Was told if tested positive I’d get a call) Just gets really frustrating when you have symptoms,and no-one really understands how you feel inside,because outside you look fine. Keeping plodding,the tiredness is what gets me most.

Nat :slight_smile:

Hi Caro, thanks for the reply. In my late teens had really bad migraines,due to the contraceptive pill. Got funny vision,followed by the most awful headpain. I would sleep it off in a darkened room and apart from feeling groggy the next day would be fine.Wouldn’t then get another for awhile. Came off the pill and they stopped.However 3 years ago I woke in the early hours with pins n needles in whole of right side,could have cut me in half. Sent to hospital suspected TIA. Other symptoms were:

Dizzyness/lightheaded

Rightsided weakness,arm and leg

Fatigue

Blurred vision

Sudden hearing loss in left ear (still have this,no improvement)

Normal scans,told it was silent migraine,put on amitriptylene. After months of being on this,didn’t know if they were still working or if my symptoms had changed or improved so came off them,and was ok ish,much better than before. Nearly a year of symptom free and no meds,on the jogger,came off after 10 mins as I couldn’t run,right sided weakness again and symptoms as before, no blurred vision., but now get pain,mostly in right leg and arm. Frustrating and knackered,just managing to go to work.

Sorry for the long reply. Just good to talk with people who understand where your coming from.

1 Like

i also had very bad migraines WITH pain in my teens just like your description followed by symptoms without headache later so i know what you are talking about. I looked up Hughes but it doesnt fit for me in many other trhings. have you had a MRI or/and a lumbar puncture recently? that would tell more of course. im typing from my phone which i hate so thats is why i am brief now but will write more on this tomorrow. it would be interesting to know of you had other symptoms? best, C

Caro, I have quite recently had an MRI,which was clear,no lumbar puncture. This time my symptoms are fatigue which is always there,but worse in the afternoon. I have plenty of sleep and sleep well,but always wake up shattered. Right arm and leg have pains (not all the time) and this can go into my fingers. I have brain fog and forgetfuness. Weakness in right arm and leg,poured boiling water over left hand when pouring a cup of tea. Both times it’s happened I have had to have 6 weeks off work, as I can’t function properly. Just about get through the working day and then collapse some days when I get in,hard with 3 kids. But just figure you have to not give in to these things and keep trying,but easier said than done.

Look forward to hearing from you tomorrow

Nat

Hi guys x

I get Acephalgic Migraines - sounds like the same thing?

I also had the visual auras followed by blinding headache as a teenager - they stopped when I got pregnant with my son

Then a couple of years ago I started having the ones without the headache - they usually last dead on 20 mins for the aura to clear … and sometimes I get the right sided numbness and tingling with it xx

I’ve been tentatively looking at Hemiplegic Migraine - looks like a lot of the MS symptoms fit with that too x

I’m keeping an open mind xxxxjenxxxx

Hi Jen, not heard of those sorts of migraines, will google tomorrow, as really too tired now to look. What sort of aura do you get, don’t think I have any. All the symptoms I’ve had and still have,last for months on end. Can migraines last this long??? Just have to play the waiting game I suppose.

Thanks for the reply

Nat x

Hi Nat, and welcome :slight_smile:

I saw a migraine specialist last year and, since he wasn’t in a rush, we had a chat about different types and treatments. One of the things he mentioned was that some people can get migraines that last for weeks on end. I didn’t dwell on it since it wasn’t relevant to me, but I definitely remember it and that he said that it’s often necessary for them to have intravenous sodium valproate to stop them. He mentioned other treatments too, but I can’t remember the details. Anyway, the important parts of that is that migraines can last a long time (although I think it’s rare) and that there is a treatment for it.

I’m not sure that someone who gets these long-lasting migraine would get them so infrequently mind you. And I don’t know if migraine can cause permanent symptoms like your hearing loss. Migraine can cause brain lesions which implies it’s possible, but that’s only speculation on my part.

I guess what I would do if I were you is to try and get a referral to a really good migraine specialist. (If you are anywhere in / near London, send me a pm and I’ll let you know the name of the bloke I saw at Charing Cross hospital - he was lovely and, more importantly, excellent.) Getting migraine well and truly investigated and either ruled in or ruled out might get you closer to a diagnosis.

Good luck!

Karen x

Hi Nat x

My aura starts with feeling really weird, slurring and mixing my words up - then comes a big blind spot - both eyes.

There is always a tiny shimmering colurful light - like a prism - to the side of the blind spot - this just seems to grow and expand into a rathr pretty jagged, flashing, colourful ‘arc’ - it totally fills my vision!

If it wasn’t so horrible and scary it would be beautiful!!!

After 30 mins it just goes - but it leaves me feeling like I’ve drunk a bottle of vodka with a hangover from hell for days!

Sometimes I get the numbness one side of my face and down my side - this also eases after an hour or so.

Once they start I have to lie down wherever I am and they can come in twos or threes - one after the other

Like I said when I was a teenager the aura was always followed by the worst headache you can imagine and vomitting.

I must say over the years I have had really bad, severe headaches - perhaps with the flu or whatever - but nothing is like a true migraine headache - with one of those I just used to want to die!!

Thank God I don’t get the headache with them any more - in fact I haven’t had the aura for about 2 years now - touch wood they only lasted about a year this time.

What I’m trying to say is they are pretty powerful things - so nothing would surprise me re them lasting a long time - the only thing I would say is - because they are so distinctive - I think I would know if they were lasting weeks - there is always a clear beginning and a clear end.

I have lots of lesions in my frontal lobe - I think these could well be caused by the migraines - although nobody has said it to me.

16 years ago I had an EEG - the test where they put all those electrodes on your head - that makes your hair look like Worzel Gummages!

Halfway through, the man doing the test suddenly said to me “ah! you get migraines” I said yes but I haven’t had them since I was a teenager and asked him how he knew. He said that there is a particular ‘wave’ or pattern that sometimes shows up on the test - he said it is right near where the ‘wave’ is for diagnosing epilepsy.

He said that not all migraineurs have the wave - but when he sees it he knows that the person being tested will most cetainly have the aura & headache type ones!

Interesting! The brain is a funny old thing xxxjenxxxx

Hi Nat,

my symptoms are simular to yours, but the mirror your symptoms, all my weakness pins and needles, cold and hot patches are on the left side and my hearing loss and tinnitus is in my right ear. I too get dizzness and balance problems and shooting pains up both fingers upto my elbows and in both big toes. I have no diagnosis. I do take Warefaren to keep my blood thin as initially they thought it is to do with small strokes.

Hello everyone

I’m a newbie to the forum and would like to introduce myself. I’m Hayley and have recently been diagnosed with MS. My symptoms started in beginning of May last year. They are unsure which type at the moment, but is starting to lean towards Primary Progressive. Feeling very frustrated with my neurologist - I feel like I’ve been left in limbo. Not on any DMD’s yet! Waiting to see another neurologist at another local hospital for 2nd opinion.

Hello everyone

I’m a newbie to the forum and would like to introduce myself. I’m Hayley and have recently been diagnosed with MS. My symptoms started in beginning of May last year. They are unsure which type at the moment, but is starting to lean towards Primary Progressive. Feeling very frustrated with my neurologist - I feel like I’ve been left in limbo. Not on any DMD’s yet! Waiting to see another neurologist at another local hospital for 2nd opinion.

Thanks for all the replys, really interesting to read. Jen your right the brain is a funny old thing, I don’t get a beginning and an end, I used to before years ago with the headache migraine.similiar to you,shimmering light etc, not anymore very strange. Went from being fine to not being,symptoms lasting for months on end,then they mostly went and now they are back. Would be great if would could just see what goes on inside our bodies.

Karen, ive seen your repies on lots of peoples posts and you are very knowledgeable about lots of things, do you research or do you specialise or do you have a medical job,(sorry just wondering,or my nosyness) Have you been diagnosed with ms??? Thanks for your reply, unfortunately no where near London

Medion has anyone suggested to you what it could be that’s causing your problems??? My symptoms are very much a mirror image to yours I was getting dizzyness but for now this seems to have passed,although in it’s place I get lots of pain,felt like i’d been hit in the jaw last night,and had pains in the back of my neck,some pins and needles too.

Hi Hayley, good to hear from you. How did you get diagnosed and what symptoms do you have.

Thanks again to you all,good to hear from people in the same or similiar boat

Nat

when you say weakness and fatigue what exactly do you mean? Do you mean a general feeling of permanent exhaustion or do you also mean that specific body party arent as strong as they were and does this change throughout the day?

Since my migraines are so rare Ive never really treated them but I have researched a bit and I think one of the more resent treaments are triptanes which are supposed to reduce occurance. Mybe you could ask your Dr. and see what they say. If there arent too many side effects you could try and if you respond then I guess its likely it is a form of migraine. I think its more of a chronic treatment so might not work immediately.

My migraines are actally very scary and stroke like so I know what you feel like since you describe something similar.

As I understand a clear MRI doesnt 100% rule ms out and lesions cn appear later. But I think a clear lumbar puncture doenst rule out ms either 100%.

But perhaps you should first try all migraine treatments and see how that works.

Re weakness I have this problem with my left arm that it keeps feeling weak. i can do stuff with it but the energy quickly wears out - but I think by definition thats fatigue not actualy weakness because I do have strength jsut not for long. i have this reoccuring (throughout the day) shaky, vinrating feeling in that arm too which sorts of reaches into my back where it feels like a burning sensation. Odd!

But hope you are feeling better today - take one day at a time (as my dad always advises me about everything in life:-) )

hi,

no formal diagnosis yet, its been happening since 2006 on off, each time I have an eposode it leaves something permanent behined. I have a heart problem which was thought to be releasing clots, migraine auro without headache was mentioned too and also pinch nerves or I was told it could be a combination of them all. My MRI are all clear of lesions

I did a PhD in neuroscience and used MRI to do my research so know a bit about MRI and the brain. My department have been good enough to let me keep my library privileges even though I am now retired (because of MS), so I am able to keep up to date as well as study whatever else I want.

I was diagnosed with MS in 1998 after ~18 months in limbo.

Kx

Hi Nat F

Thank you for the welcome. I’ll try and keep my story brief. Beginning of May last year, out of the blue, I felt a sudden ‘draining’ sensation down the side of my face that left numbness down my left cheek, inside my mouth and tongue but just on the left side. This lasted for a few days then it went. Straight after that, the centre of my vision in my right eye suddenly became blurry (remained that way ever since). I saw the optician first, they said ‘your eyes are fine’, then I saw my GP, who referred me to a neurologist. He sent me for an MRI, didn’t go until August. The days before I went for my MRI, a whole load of neurological symptoms just came from nowhere!; sudden weakness down my right arm, more numbness down both sides of my face and neck, flashing lights, felt dippy and ‘fuzzy’ constantly, felt ‘weird’ sensations going on inside my head and sudden bouts of vertigo etc.

I didn’t need to wait long before I received a letter telling me that I need to go back for the results. The neurologist showed me the MRI (it was amazing looking at your brain) there was approximately half a dozen lesions dotted here and there; each roughly the size of a 5 pence piece. He didn’t diagnose me there and then but said that this was looking like MS but wanted to rule out vascular problems first. They came back all clear. My symptoms continued, I had the 3 day course of steroids in November. Then I had a couple of episodes of ‘tonic spasms’ (very nasty) about a week later. Saw neurologist again in December and then he confirmed diagnosis.

I saw the MS nurse in January, and she told me that I have RRMS because ‘I’ve only had 2 relapses written in my notes’. I walked away from the appointment thinking ‘that’s not right, I can think of at least 8 relapses off the top of my head, with only 1 remission’.

I’ve since seen the Occupational Health Doctor, and they were horrified that I’m not yet on DMD’s and believes I’ve been mis diagnosed with the type of MS. So I’m waiting to hear from another neurologist for a 2nd opinion.

Sorry, it’s long winded. :frowning:

Hi Haylebob!! welcome xxxx

If I were you I would start a new thread of your own xxx just cut and past your post above into it - so everyone can see it xxxjenxxx