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AVM Survivors Network

My story so far-Updated


#41

Thankyou for the reply, I can’t remember exactly how long I have had this for but it seems to be after the blurry eyes episodes I get hit with vertigo for a few days afterwards. Do you know anything that helps with vertigo symptoms? I really hate the dizzy, unsteady feeling. I hope you’re doing well x


#42

Hi CharlotteLouise 2992, I’ve had two dye angiograms and both were done with light anaesthetic. I had two Bandaids in my groin and one where the embolization was done. There was little discomfort afterwards. I hope it will be the same for you. Even if no anaesthetic is used, local numbing will be done to keep you pain-free. Maybe share your concern with your doctor/surgeon. I find for myself that information eases anxiety. All the very best. Please update us and let us know how you fared.


#43

Sorry! I didn’t answer you. Yes, my doc gave me some prochlorperazine maleate tablets, though I don’t think they really made any difference to me.

How are you doing?


#44

How are things going now, Charlotte? Well, I hope.


#45

Hi @DickD,
I have just been to my GP today and I too have been prescribed prochlorperazine maleate tablets. He wants to me to take them for a week and see if I have any improvement on the vertigo symptoms. He thinks I am suffering with basilar artery migraines, do you know much about these migraines? I hope you’re well


#46

Hi Charlotte!

I know nothing about them. I don’t think the prochlorperazine made any difference for me. I’ll be interested if they make any difference for you / or do not.

In terms of my apparent vertigo, I would say I get a bit when I first get up, perhaps because I tend to get up in the dark and make my way to the bathroom without setting lights on and waking Mrs D, so I have fewer visual clues as to balance. Equally, it feels like a problem when I first wake my brain into action in the day. The time I had a proper vertigo sensation was also immediately upon getting up.

In general, I’m doing fine, thank you. Main complaint at the moment is just normal tinnitus which seems loud but if it just rub my forefinger and thumb gently together near my ear, I can hear the soft sound quite easily, so it cannot really be noisy.

Hope you’re doing well.

Very best wishes

Richard


#47

Hi @DickD,
I have only just started them today but I’ll be sure to let you know how I get on with them. My doctor wants me to take them for a week and if my vertigo symptoms don’t get any better then he thinks these symptoms are related to my avm.
That is good that you have figured out a routine with your symptoms in terms of when to expect them. I still feel like I am learning and things that I have over looked for years are now standing out to me so I am still trying to figure out my own routine. All I do know is I can’t look at something by turning my head to a side, I have to be face on and I am really bad at turning my head to look behind me (reversing in a car is bad!!) these seem to give me my main vertigo symptoms that I have noticed so far but I am going to keep notes and try and work out what is going wrong in my brain. I just want to be a healthy 26 year old again with no worries!
I am glad you are doing well. I don’t experience tinnitus luckily! Have you always suffered with this? X


#48

I’ve had tinnitus for years, since an evening in front of a big speaker at a music venue, but I gained a pulsatile tinnitus from about Sep 2015 which was my DAVF. Post embolization, I’ve got a different set of noises going on but the straight tinnitus seems noisier than pre op and as I say quite noisy recently. The best trick is never to listen to it!

I do find looking from side to side in the car more of a challenge, too. But not something that limits me… yet.