Hello it’s Chloe here . I have been out of the loop for awhile I have been doing great a year after embolization and 7 plus months after a small dose of radiation. Question has anyone had a symptom of your head feeling full upon standing not all the time but some times . And feeling like a thumping and my ears feel plugged . It goes away and I almost think it’s my BP because it’s on the low side or if I don’t eat enough. But as always I go to the worst case thinking my AVM has returned. Has anyone had this I has it before I knew about the avm but I heard more of a swishing I don’t hear that now . Any feed back would be great .
Thank you 
Hi @Chloe
I have Ehlers Danlos, which also sometimes comes with a form of dysautonomia, there are many different types but I believe all come with low bp, my sister also has it but hers is called POTs, more serious, but we both take midodrine to make our bp be like a reg person and she has to take a long release propanol.
Not many drs sadly know about it and some infact don’t believe in it! Stanford has an entire Dept dedicated to with neurologists called the autonomic Dept. There are 3 tests they do 1) tilt table test 2) sweat test ( apparently I don’t sweat enough) 3) is a breathing test
Here is a good source Dysautonomia International: For Patients
Now you don’t have to have Ehlers Danlos to have it.
Another thing we have that gives that full head feeling is Ménière’s
A good ENT came properly diagnose you and probably that is the easiest after you make sure you don’t have another AVM to verify.
How I control it is staying away from regular salt . Turns out I am super allergic to iodine due to my shellfish allergy. So I only have Celtic sea salt or Himalayan salt.
It taste so much better too. I always hated salt before , guess my taste buds were protecting me.
Also the swishing sounds like when we first discovered my DAVF AVM @DickD - and mine was retrograde taking the blood flow going backwards….prior to that what caused it was 5 blood clots in my brain and my head did feel like a sinus infection on my brain as it got worse .
You need a MRV to see blood clots in your brain.
I ended up having a massive stroke and going into a coma.
I had brain damage and was paralyzed. Then about 3 months I felt weird and I think that’s when my transverse sinus vein collapsed, then my body tried to fix it growing a complex DAVF. Which I still have.
Please contact your team and have them do both an MRA and MRV.
Oops sorry I thought you said you do hear swishing …thank goodness…
Keep us posted
Hugs
Angela
1 Like
Hi Chloe, did you consider the possibility of a little swelling from the radiation? Mine showed up about 6 months or so after gamma knife, didn’t need medication but some thickness and ice pick headaches. John
1 Like
I did just have an mri in august and there was no swelling. I have always had this but before my avm was discovered I heard switching now I don’t anymore.
I honestly get this more when I’m hungry or my blood sugar is low . And I also have low BP . Someone said I could have blood clots but I have always had this I just used to heard the swishing pre avm and now I don’t it’s just pressure. I honestly think it’s something with my ears they feel plugged.
Hey Chloe,
Yes, I too have/had that ‘head feeling full’ sensation, with the thumping/ear issues post-surgery, although mine wasn’t embolization but rather craniotomy. They did scans after the operation, telling me all is OK, but WOW. I’m almost 10yrs on from my last surgery and still today I often go to stand up, I get this pounding, then light-headedness and often have to brace myself from falling. I saw all sorts of specialists but with no real answers. Lots of ‘…it could be ‘X’ or it could be ‘Y’…’ but nothing definitive. The closest I came to an answer, if you can call it that, was from a Dr who said to me ‘Well, you’ve had brain surgery… …What did you expect?’ I didn’t expect THIS.
I now consider it to simply be one of those things I have to manage around. Some days it’s minimal, but then some days it’s overwhelming. I have found that if I over do it today, I can be awfully symptomatic tomorrow (I consider this as self-inflicted. My fault. And I can accept it a bit more). I ask myself those questions, have I eaten? have I taken medication? Is it environmental/weather related? If the answer is yes, I can be a little more accepting. But when there seems to be no attributable cause I tend to get REALLY frustrated with myself ie Why can’t I?
I have an issue with my ICP levels (Intracranial Pressures) often to the point it feels like my eyeballs are going to explode from my skull. Chronic bad. I’ve turned up at hospital, thinking there’s an issue, only for them to do a scan and send me home saying they couldn’t see anything wrong. But I think it’s pretty normal for us to automatically go to the worst case scenario, especially when we’ve already had THAT experience.
Merl from the Modsupport Team
1 Like
I had an embolisation for a DAVF (straight shunt AVM), connecting into my right transverse sinus back in 2017. I’d say the embolisation was much more disturbing than I expected. Having righted all of the pressures – low pressure in my various major sinuses and high pressure in whichever artery had been previously gushing into the TVS – I got similar feelings of oddness in the head, I’d say mostly when walking or being driven (or driving).
It took ages for that to fade. In fact, I went backwards more than once and had some further scans to see if all was ok… it was.
I also had the “swishing” as you call it, at least I had “pulsatile tinnitus”, which in my case was like a “whoosh” or “busshh” sound, once a second – in line with my heartbeat. This was the sound of the rough flow of high pressure blood squirting through the AVM and into my transverse sinuses, then flooding in all directions, including through my sigmoid sinuses, which pass the ears. This ceased with the op, though I suddenly could hear a strong, healthy pulse presumably as I was intensely listening to the sounds in my head but also (I ascribed it to) the nice new high pressures being maintained in an artery previously not getting the flow it should.
So I hope you might be similar and have a similar explanation.
Best wishes,
Richard
2 Likes
Thank you yes that’s exactly what it is a pounding feeling and my ears feel full. And then it slowly goes away . I feel
So much better reading these because I get very nervous ,
Before they found the avm inheard the swishing noise now I just feel
The pounding . I guess we could say this is positive maybe . I’m going for another a angio in February or March. So that will tell me is it’s gone fingers crossed. Thank you all so much this group always helps me through all this crazy stuff that comes up .
I’m so
Thankful for all of you
1 Like
Yes, I’d forgotten about the ears feeling full feeling. Everything you say matches how I was post op. You’re still quite early post op. Do any follow ups that you have and ask questions of them as to what to expect / any concerns. I had a few sessions of significant dizziness, the first at about 6 months post op and was rescanned – MRI and angiogram – and was told nothing to worry about.
If you get anything that is sudden or significant, I would always avocate going to the doc or the emergency department, depending on how severe, but what you’re currently describing sounds like the same stuff I went through and there were no concerns.
Hope this helps,
Richard
3 Likes
I think we all do Chloe, well, I certainly did. Initially every ache, every pain and I was thinking ‘Is this it?’ It was like walking on egg shells, just waiting for the next one to break. But over time we learn what side effects are ‘Normal’ (as if any of it is normal) and which side effects are an ‘ACT NOW’ sign. And over time you too will learn your signs.
I think everybody’s ‘Act Now’ signs are fairly unique to the individual, for some it can be a headache. I get BAD headaches every day, if I was to go to emergency every time I got a bad headache, I might as well setup permanent residence in the emergency bay.
But I must also agree with Richard ‘If you get anything that is sudden or significant, I would always advocate going to the doc or the emergency department’
And…, hey, it’s not ‘…crazy stuff that comes up…’, it’s our reality. The number of "what if…?’ questions I had was endless. Crazy is letting those thoughts run wild (I let mine run away with me for a while, I needed answers, had no one to ask and I went down some nasty dark holes), don’t do that. Use the resources you have, ask us. We know because we’ve lived it too.
Merl from the Modsupport Team
1 Like
Yes it has helped alot . Like I said I had it before my avm was found but I heard swishing and now pressure in ears and head . Otherwise I feel great . I had a cat scan in may and all seemed good . I keep forgetting it has only been about a little over a year since my embolization. And 8 months since radiation. So my brain has a lot to go through still .
3 Likes