Complex Migraines

[Guest]

Hi All,
I'm not sure this is the right place for this but I know some of you suffer migraines and I'm at the end of my tether now. I've suffered migraines since I was 15, so 27 years now. I always get visual disturbance and sometimes weakness and numbness in my right arm occasionally aphasia with confusion. Last Thursday afternoon I was at work when the aura started but the blank spot was bigger & more central than normal, within half an hour I became so unwell I couldn't work and I didn't make any sense so my staff called an ambulance which the phone operator said would be some time. The decision was made by my staff to rush me to the hospital I remember only the odd flashback about this whole incident until I was taken to a ward.
In A & E I'm told I had right arm paralysis aphasia confusion total memory loss as in when I could talk I didn't know my name or age etc, I couldn't stand and was barely conscious. I spent five nights in hospital having MRIs CTs XRays bloods multiple consultations etc. I was told possible mini stroke as many symptoms have gone now but I still feel slightly not all there & dizzy like I'm drunk. The neurologist has stopped the asprin now as he says it was a very severe complex migraine, he's prescribed me topomax and told me to come to his migraine clinic in a month or so when I've built up the dose.
I had bad migraines before but never at this level, has anyone else had this, does it really sound like migraine, I thought I was about to die before I lost conscious and the whole time in hospital I've been waiting to have the stroke confirmed, never thought it could be anything else. Really shook me up and now I'm really scared of it happening again or worse. Any opinions or advice appreciated especially if anyone has had similar & are there any migraine forums where I can find more advice.
Many Thanks, Richie.

 

[Richie Rich]

Hi All,
I'm not sure this is the right place for this but I know some of you suffer migraines and I'm at the end of my tether now. I've suffered migraines since I was 15, so 27 years now. I always get visual disturbance and sometimes weakness and numbness in my right arm occasionally aphasia with confusion. Last Thursday afternoon I was at work when the aura started but the blank spot was bigger & more central than normal, within half an hour I became so unwell I couldn't work and I didn't make any sense so my staff called an ambulance which the phone operator said would be some time. The decision was made by my staff to rush me to the hospital I remember only the odd flashback about this whole incident until I was taken to a ward.
In A & E I'm told I had right arm paralysis aphasia confusion total memory loss as in when I could talk I didn't know my name or age etc, I couldn't stand and was barely conscious. I spent five nights in hospital having MRIs CTs XRays bloods multiple consultations etc. I was told possible mini stroke as many symptoms have gone now but I still feel slightly not all there & dizzy like I'm drunk. The neurologist has stopped the asprin now as he says it was a very severe complex migraine, he's prescribed me topomax and told me to come to his migraine clinic in a month or so when I've built up the dose.
I had bad migraines before but never at this level, has anyone else had this, does it really sound like migraine, I thought I was about to die before I lost conscious and the whole time in hospital I've been waiting to have the stroke confirmed, never thought it could be anything else. Really shook me up and now I'm really scared of it happening again or worse. Any opinions or advice appreciated especially if anyone has had similar & are there any migraine forums where I can find more advice.
Many Thanks, Richie.

Sorry forgot to login

 

[Freddie]

I'm sorry I can't help you, I can only suggest that you talk you your cardiologist before you stop taking aspirin.
My neurologist also told me to stop taking aspirin and when I told my cardiologist he told me, "neurologists don't understand how aspirin works....carry on taking it"

I've come to learn to ask the doctor who prescribed me any medication before another doctor tells me to discontinue it.
Good Luck

 

[yotphix]

I can sympathize, though I've never had anything quite so dramatic as that. I've had visual migraines since I was 16 or 17, though thankfully only actual headaches a few times in my life. In summer of 2014 though, I took a ride to a stroke centre in an ambulance when, in the shower at 5:30 in the morning, I suddenly couldn't find vertical. I had to drop to the floor and crawl to my wife's bedside to tell her something was wrong, and when I tried to speak, the whole left side of my face was frozen, including that half of my tongue. It was disconcerting, to say the least, and she, wisely called 911. I was disoriented, dizzy, and weak. I did manage to walk sort of sideways with support to the gurney, but by the time I got to the hospital, I was feeling much better.
The stroke team did all of there testing, and concluded that stroke (especially because I was anticoagulated with warfarin and in range, AND taking 81mg aspirin daily) was unlikely. The proposed complex migraine, and told me all sorts of tales about people presenting with as dire sets of symptoms as you describe and more. They sent me to Neurology, who, in consultation with my cardiologist, agreed that I seemed fine, and should consider it a migraine. They also all asked me to ride the ambulance to hospital again if I experienced the same or similar symptoms!
Best of luck with it, I hope it just becomes an interesting anecdote for you, and that you can move on without fear.

 

[Richie Rich]

I'm sorry I can't help you, I can only suggest that you talk you your cardiologist before you stop taking aspirin.
My neurologist also told me to stop taking aspirin and when I told my cardiologist he told me, "neurologists don't understand how aspirin works....carry on taking it"

I've come to learn to ask the doctor who prescribed me any medication before another doctor tells me to discontinue it.
Good Luck

Thanks Freddie, I'd love to speak to my cardiologist but as an NHS UK patient it's not that simple as I need a GP referral which can take months. I've asked my GPs opinion but he's told me to do as I'm told. He wants to look at the notes from the hospital before over ruling the neurologist but he hasn't got them yet, so I have to wait until Monday. I've stopped the asprin but I've got a box at home & am tempted to take no notice, can it harm?

 

[Richie Rich]

I can sympathize, though I've never had anything quite so dramatic as that. I've had visual migraines since I was 16 or 17, though thankfully only actual headaches a few times in my life. In summer of 2014 though, I took a ride to a stroke centre in an ambulance when, in the shower at 5:30 in the morning, I suddenly couldn't find vertical. I had to drop to the floor and crawl to my wife's bedside to tell her something was wrong, and when I tried to speak, the whole left side of my face was frozen, including that half of my tongue. It was disconcerting, to say the least, and she, wisely called 911. I was disoriented, dizzy, and weak. I did manage to walk sort of sideways with support to the gurney, but by the time I got to the hospital, I was feeling much better.
The stroke team did all of there testing, and concluded that stroke (especially because I was anticoagulated with warfarin and in range, AND taking 81mg aspirin daily) was unlikely. The proposed complex migraine, and told me all sorts of tales about people presenting with as dire sets of symptoms as you describe and more. They sent me to Neurology, who, in consultation with my cardiologist, agreed that I seemed fine, and should consider it a migraine. They also all asked me to ride the ambulance to hospital again if I experienced the same or similar symptoms!
Best of luck with it, I hope it just becomes an interesting anecdote for you, and that you can move on without fear.

Thanks Yotphix,
That sounds as scarey as what I went through, I would just put it down to complex migraine but I still feel so bad a week later I'm wondering if there is more to it. I feel like I'm drunk all the time my memory is really bad I can't concentrate and my legs ache really bad like I've been for a long run. I tried to go to work yesterday but only lasted half the day & was sent home. I went in again this morning but really struggled to focus on work then I became slightly confused,not like before but enough to concern work colleagues who said I was white as a sheet & looked similar to last week when I was hospitalised, I was sent home after an hour & went straight to bed. When I woke up felt much better but the vertigo & brain fog are still there. I think I may ask my GP to see a cardiologist incase it has something to do with my leaky aortic valve, bit scared now.

 

[cldlhd]

I've had the aura with migraine since I was around 12. I would get a couple a year and occasionally I would get numbness in one hand or my lips or tongue. Post surgery I get the aura a couple days a week but thankfully no subsequent migraine. My cardiologist likes the 81mg daily aspirin although my surgeon says it's unnecessary. Did the neurologist explain why he wants you to stop taking it? I've wondered if it has any connection to the more frequent auras I've been getting, always looking to eliminate a possible trigger. A couple months for a referral is too long for something that serious. Isn't there any way to message the cardiologist with a question? The cardiologist I see is part of the same medical group as my GP and they have a webpage where you can message anyone of your doctor's with a question and they usually get back to you within a couple days. I'm in the US so I know it's a totally different system with each having their own plusses and minuses ,but that's too long to wait.

 

[Richie Rich]

I've had the aura with migraine since I was around 12. I would get a couple a year and occasionally I would get numbness in one hand or my lips or tongue. Post surgery I get the aura a couple days a week but thankfully no subsequent migraine. My cardiologist likes the 81mg daily aspirin although my surgeon says it's unnecessary. Did the neurologist explain why he wants you to stop taking it? I've wondered if it has any connection to the more frequent auras I've been getting, always looking to eliminate a possible trigger. A couple months for a referral is too long for something that serious. Isn't there any way to message the cardiologist with a question? The cardiologist I see is part of the same medical group as my GP and they have a webpage where you can message anyone of your doctor's with a question and they usually get back to you within a couple days. I'm in the US so I know it's a totally different system with each having their own plusses and minuses ,but that's too long to wait.

The neurologist said my CT & MRI were both clean no sign of stroke or TIA & that I was put on asprin as I was being treated for suspected TIA or stroke. The other doctors didn't quite put it like that though, they seemed to think what I suffered was so severe that asprin would be wise regardless. No cardiologist has ever advised I take asprin before. The neurologist did say what I suffered was so extreme it could trigger a stroke if I had another that bad so that's why he put me on Topomax, I'm wondering if they can interfere or if like you say asprin is a trigger. I may have an email for my cardiologist somewhere I will give it a go as I saw my GP earlier & he says do what the neurologist tells me as he knows best apparently.
Thanks, Richie.

 

[cldlhd]

It can be confusing when different doctors have conflicting opinions. Best of luck and keep us posted.