Hello!
It started in September where i’d go numb to my fingers all the way to my feet (this only happened on the affected side of my AVM, right side). I went to the ER and they couldn’t find anything, I thought my AVM came back, but that’s not the case (thankfully). This has been happening for months now, it started to happen more frequently now and I just want answers.
Do I have a pinched nerve? Or is my arm not moving enough, and why would it cause my whole right side to go numb. Doesn’t make sense!
If any of you have experienced this and can help, please let me know! Thank you.
That’s what I thought. I’m not a doctor. I’ve read about migraine aura and they can cover all sorts of things. One of the possible aura effects is paraesthesia; and things like scotomas (which I had for a while) run typically for 20 minutes before resolving.
So… ask the doctor if it could just be migraine aura.
The book I’ve read is very suspicious of aura that don’t transgress from one hemisphere to the other – that there is something less benign driving the migraine-like symptoms – but then we know you’ve got/had an AVM and you’ve had interventions, so there’s plenty of fiddling around with stuff in your brain for something to be triggering migraine-like symptoms.
I think you nailed it. I’ve never heard about “migraine-like paraesthesia aura”. I looked it up and can cause vomiting & confusion (which I thought were only signs I was anxious/nervous). This didn’t happen before through, I mean I had migraines yes, and a whole lot of headaches, but episode like these weren’t happening.
My understanding is that aura are harbingers of a migraine, so typically occur as a warning sign of migraine onset. The effects of migraine are astoundingly broad. So nausea, vomiting, flashing lights, even things like fear or dread!
I think the fact it was followed by a headache makes it more likely it was aura but migraine is so broad that you don’t actually have to progress from aura to migraine headache. It’s just so different in different people.
But remember, I know nothing. It’s something to talk with your doc about rather than rely on me. The book I read is called Migraine by Oliver Sacks (he of Awakenings fame). I think it’s fascinating but I lent my copy out and then haven’t had it back.
I too have had issues with tingles in my hands and feet. I’ve also had those tingles just on one side (I thought I was having a stroke) but the medicos couldn’t find any issue. It was explained to me that taken in isolation thoughts of a stroke with the tingling is not uncommon, but due to my brain issues and the surgeries, it was more likely a ‘side effect’ of the surgeries. Those micro-fine neurocircuitries have been disturbed, that can send misfires through our entire bodily systems.
I have to agree with DickD in regard to ‘migraine-like paraesthesia aura’. Within the ‘Migraine World’ they commonly talk of ‘prodrome’ and ‘postdrome’ symptoms. Prodrome being before the actual migraine attack, postdrome being after. One of the more common prodromes for some people is that their vision can be affected prior, often giving them a warning a migraine is coming. But by no means are these prodromes only visual, in fact ANY regular pre migraine symptoms can be considered ‘Prodromes’. These prodromes can occur hours before the actual event (and hours after too). ‘Dromes’ aren’t necessarily physical either, they can present psychologically and emotionally too. Some people can rage, some can burst into tears. And then for some people there’s no ‘drome’ at all. When a migraine hits it’s like a bolt of lightning out of the blue.
During my ‘Migraine Investigations’ it was suggested that my issue maybe related to the change in blood flow after surgery. Due to this I was trialled on all sorts of blood pressure meds and epilepsy meds, but unfortunately, these did not have the desired effect. There is also a nasal spray which, for some people who get prodromes, or pre warning of an attack, can administer to help reduce the severity or shorten its length. It would be well worth asking your neuro about such treatments and their appropriateness for your use. Some people report a miraculous relief but please be aware this is NOT always the case (In other words, they didn’t benefit me). There are also other migraine treatments such as a drug class known as triptans which have also shown to be beneficial for some.
Part of the problem with migraines is that the triggers and their effects can be VERY individual and so can their treatment. Finding your specific ‘key’ (what works for you) can be very illusive but is well worth hunting for as along the way you may find other management tools to assist.
Best of luck with it all and I hope, wish, beg that you find your ‘key’.
I get spells where it feels like my stroke/hemorrhage is back
I’ve had a solid handful by now - first one really bugged me out, so I ran into ER - they ran me through the MRI faster than a McD’s drive through. And - found nothing
The best way the staff could explain it, it was caused by CNS damage from my hemorrhage. They said it can be onset by just about anything(stress, dehydration, over working, etc.)
After that release from ER I can clearly recall two more solid ones - my right side would go numb, leg & arm - no major head pain, just semi light throbs all over the place around the area where the hemorrhage occurred.
Both, lasted well over a week(I’m remembering my last one & it had to be a 3rd strong one) - this was maybe about 3-4 months ago. But, the same thing - it almost felt like when your leg falls asleep - but, lasts for a week+
We have nurse friends and I was getting ready to go ask one for help - but, still decided against it - her & my wife don’t exactly get along too well. But, I used the same technique they use - primary way “they” detect a true stroke is by loss of strength in the effected side - none of the times I lost strength - just had the same dead leg/arm sensation
CNS damage is pretty much the explanation for my occurrences. And, it feels weird - the last one was 3-4 months ago. But, it’s def odd - they told me at Barrow that what I am experiencing is fairly common & is actually light in comparison to other patients.
All of this adds to my constant anxiety that I fight daily. It sure doesn’t feel “normal” for the right side of your body just to feel tingly all the sudden & last for over a week
+1000 on that one, but I’ll tell you one thing Mike… …it’s nice to know I’m not the only one having these oddball ‘what-the-hell’ symptoms. Those tingles scare the bejeezus out of me sometimes, especially when there’s no apparent reason. Sure, if it’s self inflicted ie I’ve overdone it (again) I can sort of justify it to myself, but when it comes out of the blue… GGRrrrrrrrr. My face drops, my eye closes up, my arm tingles, especially my fingers and I look ‘Bloody awful’ or so I’ve been told. The last person who told me that got me on a REAL bad day and my blood instantly boiled “You think it looks bad from your side? You want to come have a look from this side…” with all the venom I can muster. What they can see is a tiny piece of what I’m trying to manage. My wife can read me like a book, if she sees my eye closing up she’s asking about meds, if she sees me rubbing my fingers together she knows it’s numbing and/or tingling. I try to tell her it’s all OK “Well, you don’t usually wink at me like that…” as my eye closes up. Damn it.
I have spoken to the medicos about the ‘tingles’ and was told that it was all post surgery side effects which would eventually settle, but they never fully resolved.
Don’t want to give medical advice as obviously numbness can be very serious
But thought I’d chime in as I occasionally (has happened maybe 20 times in 1.5 years) get numbness on right side and I also can’t swallow or talk and eyes hurt and light is so bright I have to close my eyes
Very frightening. But I believe it’s migraine in my case because I have had angiograms done and everything was still cured
Also it’s happened a few times now without headache which scared me until I found out you can have a migraine without pain but still get all the other symptoms
Hopefully it’s just a migraine and nothing more serious but if super worried, I’d be asking for scans done
I have a lot numbness and tingling- sometimes with migraine, some times just with a small headache, some times no head pain at all - on my affected side. It can be VERY disconcerting, and annoying also. I was told it is neurology in nature, and quite frankly, they’re not sure why it happens. It could be a million different reasons or none. There could have been nerve damage with my craniotomy, or it could be an aura for migraine. It could be vascular or blood pressure changes in my body after the AVM removal. I was told those were the top reasons.
There’s a another thread where we touch on the “numbs” briefly. I needed some help with finding a good neurologist, and the topic was happily hijacked.
Just curious, what kind of test did you have done to rule out other AVMs? I know that the only sure positive way is by an angiogram, as MRIs and CAT scans can sometimes not truly show these. I had the same tingling that you mentioned and googled everything, trying to ensure myself it wasn’t anything serious. Long story I found out via an angiogram that I had a type of AVM called a DAVF. Your symptoms could however be post surgery related as others mentioned. I’m only commenting to give you my story and ensure that you have ruled out all other possibilities.
A DAVF is basically a specific type of AVM. It stands for dural arteriovenous fistula and it means that it is in the Dura Mater meningeal layer (involves arteries or veins in that layer) rather than being deeper into the brain.
The categorisation of how/when to treat a DAVF is different from that of other brain AVMs and is often assessed on the Borden scale rather than the Spetzler-Martin grading. (Other scales are available!)
My AVM was a DAVF in my right occipital and whatever artery was involved was busy discharging into my right transverse sinus. I had an embolisation to glue up the join, which, as far as I can tell, was much more of a “shunt” (a direct connection) than the more typical AVM tangle or “nidus” of vessels.
It is a type of AVM, it stands for Dural arteriovenous Fistula. It is an abnormal connection of vessels in the tissues around the brain in which one or more arteries are directly connected to one or more veins. I had an embolization done with coils to correct mine. I also had an angiogram done 6 months after to confirm mine was gone. Glad to hear you had an angiogram done as well.
I too have been getting a weird sort of sensation occasionally (only started a month ago, but my embolisation was 6 months ago - resulted in a stroke, but they got rid of an aneurysm - GK soon to sort the rest of my AVM). The exact feeling is as if they are shooting dye (like an angiogram) but in my left arm/ear/side/leg)… the flushing feeling. No headaches or pain anywhere at all, and lasts between 15-30 minutes.
I am waiting to hear back from my neurologist to see what she thinks, but after reading through this, I’m thinking maybe just misfires or vascular/blood pressure change? They are super random too - can do an intense workout and nothing, or just sitting down and it happens?! So strange!
