Just a little update from me

Was having lots of worrisome symptoms this past year alone, after 6 years of nothing. Anyways just had my angiogram and results showed I’m still AVM free :muscle:t3::brain: and my two fusiform aneurysms post no threat I will seek a second opinion this September if the symptoms continue by then, but if they don’t, I will accept this Dr’s diagnosis of scar tissue causing a havock.
My symptoms have been vision problems, seizures not being controlled (we had to add a new medication and that seemed to work but now my normal anti seizure is that of an OD doseand not by my weight which sucks but it is what it is and what worked with my body :confused: ) oh and my debilitating headaches are back. Tachycardia that I feebut it doesn’t reflect on a monitor so it feels like I am going crazy. But like if you watch me walk to lets say one room to another you see me lose my breath. I have low blood pressure by the way sooo funfun but everything came back perfect on my angiogram so for now until my 2nd opinion we sigh in relief sorry for not having posted in a while!! But im still around :slight_smile:

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Hey Teiry,
Merl from Modsupport here. Yea, it’s been a while but it’s good to see you back.

Having uncontrolled intermittent symptoms is never nice. Just when you think you’ve got it under some sort of control, that’s when they raise their ugly head. Trying to get the medicos to comprehend, they often look at me with that glazed look. And the headaches. I don’t get headaches, everybody gets headaches, Nahh, I get explosions of agony sent from the gates of hell, trying to burst through my forehead. Like someone shooting a bolt from the back of my skull out through my eyeballs. Intense. “Oh it can’t be THAT bad” says nursey. No clue.

Same. On occasions my ticker (heart) runs off to it’s own beat, like a bad pop song. I saw a cardiologist who gave me a heart monitor for a week. I returned to see him, he plugged the device in to his computer and said “Nope, it’s all good”. I said to him “Well, that’s odd 'cos I’m having symptoms right NOW” He jumped out of his chaired, wired me up to his machine and sure enough, there it was beat, beat, skip, beat, skip, skip, beat, beat, beat, skip… It was all over the place.

He gave me some medications which have settled it somewhat, but if I miss a dose OMG, it’s all over the place. I haven’t seen a cardiologist in many, many years and I think it’s about time I did a follow up. Sometimes I think when ‘brains’ are added to our symptom list it’s not a case of symptom A plus B plus C… but rather A multiplied by B multiplied by C… On there own A, B and C can be seen as manageable on their own, add the brain and the whole equation doesn’t work anymore.

I had to keep a diary for 6mths of symptoms, intensity, time, activity, weather, environment etc, etc so the medicos could find a pattern. There was no pattern. There were no obvious triggers. It was BANG and I’ve got a headache and they couldn’t/I couldn’t figure out why. I’ve trialled all sorts of treatments and alternative therapies. Seen all sorts of specialists. The closest I came to an ‘answer’ (if you can call it that) was from an ophthalmologist “well, you’ve had brain surgery… …what did you expect???..” Well, I didn’t expect THIS

And hey, You’re not crazy or you’re just as crazy as the rest of us :rofl:

Scar tissue was identified as a possible cause here too. I was told they could go in and remove it but in the process cause more scar tissue. Seemed a little self defeating to me.

Merl from the Modsupport Team

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Hi!

The tachycardia, low blood pressure, out of breath could be your heart as described above Tachycardia is a fast hear rate, atrial fibrillation is skipping beats but there’s also atrial flutter (feel like palpitations).

I have a pelvic avm and I developed atrial fibrillation and tachycardia as a result. I had a monitor twice last year that came back negative. I have always had low blood pressure. To recognise atrial fibrillation, just put your finger on your pulse : if it’s a regular thump, you’re good. If it’s got some pauses, extra beats etc it’s A-fib. The problem is you can be in A-fib for 1 hour and then nothing for 3 months so it’s difficult to catch. My cardiologist said I must have had A-fib episodes for a while but it only got caught when I found myself in A&E with it. There are watches and cardiac monitors you can buy, but this may be a bit premature and constant monitoring can cause more harm than good.

Got nothing for the headaches, so many causes…. And, as Merl said, you did have brain surgery ! :rofl:

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Good to see you post here & that your angiogram came back all perfect… I find stress does a lot of mysterious things to my body & the trauma of dealing with my AVM in the past never goes away… but I remain grateful to be here today knowing how easy any one of us could go the complete opposite with these things… hope you get better & sought that heart concern out… God bless!

Thank you for the replies you guys!! It for sure put a smile on my face :slight_smile: And you are so right! We did gi through brain surgery lol As for my heart Nathalie omgosh do they check that all the time trying to find something (to my fear oh lord please no more) :pray:t3: God is big and nothing yet but they always check just in case :’) afterall and that AVM wiring is connected to our hearts so the poor guys takes a good beating lol :cry: but whatever they look for I luckily pass, phew!! In the meantime I remain the nutjob lmao!! Until my 2nd opinion angiogram in September :brain::muscle:t3: no worries I will roam around and won’t be a stranger :slight_smile:

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