Since I was about 17/18 I had constant headaches and thyroid problems and my health declined and then I had a stroke! and at 20 it was discovered. But now since it has gone I am 24 this year it has left me with a long recovery process… I wonder Ive spent most of my early- becoming a young woman time being ill from this thing it sucks and now it’s gone it’s given me one hell of a brain injury and difficulties…
Did the AVM change you physically/ your health before it was found?or did it come out of nowhere?as I have heard that alot of people don’t have any symptoms?
1 Like
Jessica,
This is a great question! It’ll be interesting to see different people’s experiences on this.
Mine is unruptured and untreated so far but I have pulsatile tinnitus, dizziness and if I’m not careful headaches – or what I describe as the edge of a headache, one I can feel about there but I perhaps keep it at bay. I’m having a less good day today, as it happens, but among this community I am very early in my experience.
My doctor sent me in to A&E/ the ER in November and one of the questions the person I saw there asked was “has he stopped doing anything, recognising anything, forgetting, behaving differently?” and I was slightly annoyed he asked my wife (not me). But if I had stopped recognising something, it would probably be her that noticed, not me.
So, for a brain AVM, I’m sure it is possible to develop deficits before anyone considers / finds an AVM though it is I think a bleed that is more likely to, more significantly have any impact.
Great question!
Richard
My AVM came out of nowhere. I had just turned 10 years old when it ruptured. Didn’t have any health problems until that one day when it ruptured. I’m in great health now main problem is short term memory but it’s not near as bad as when this all started back in 2000. It was a long ride from the year 2000 to 2003 with 4 surgeries and a lot of recovery. Things are a lot better now just take your time and work hard you will do fine.
In retrospect, it did. MS crossed my mind but I couldn’t tell you why. Older and wiser, it was more like dystonia. I had a summer of bad headaches when I was about 12 or 13. A few other things but that’s along those lines.
Hi Jessica,
I have an avm in my brain stem and I’m told is somewhat rare. It is inoperable due to the location. I did have symptoms for about 20 years . I had severe headaches and dizziness once or twice a year since my late teens and doctors just thought I had migraines. Until last year when I had a big bleed and lost feeling in my left leg and right side of my face, lost some vision and my equilibrium. Then they found my avm and told me my previous symptoms were probably very small bleeds. All I can say is stay positive. I fought my way through and I’m about 90% “normal”. Let me know if you have any other questions you think I could help with.
20 years that is a very long time- it sounds like you have done really well. Its strange
how AVM’s can affect you before-hand
Hi Jessica, my AVM was a total surprise, no symptoms that I knew of at the time. Since my bleed at 48, I’ve had a lot of time to think, I wonder if some pulsatile tinnitus may not have been caused, and that I still experience. I guess I’ll find out once gamma knife does its thing on the next year or two…waiting patiently! I’d be guessing but I would think in many case these things cause some problems that are chalked up to a variety of potential causes. Great post, stay strong!
Hi. I just saw your post. You are not alone. I suffered when I was 7-8 years old with horrible headaches, blind spots in my vision and a bruit in my ear. I called the bruit the little thing in my ear that made noise. My mother said I was faking, and then I had a hemhorrage a month later and was in a coma for a rnumber of days. I lost the left vision in both eyes, and was forever changed from a happy kid to this me - sometimes ok, cry often, think people do not like me (as if I am a mind reader) and felt like an alien. Still do a little. It has gotten better (not the vision) but I don’t feel like an alien anymore. This was 56 years ago, and I am lucky and glad I got this much better… beans
I had headackes for more than 5 years and i always use painkillers. Headache was only on my right side and i went many doctors for my ears and dentist as it might be bruxism but there was not a cure. Then i had a seizure 10 days ago and i learned i have an AVM. I am 30 by the way.
Hi Jessica, my AVM certainly did affect me, I had symptoms from the age of 8- this was when I had my first migraine with aura. My Mum was very frightened by it because I was so young and took me to the GP who explained it as approaching puberty. This diagnosis was a bit silly really- I ended up being a very late to that party and still with the mind bending headaches. Looking back further though I remember being aware of a bruit from about the age of 5- or soldiers marching in my head was how I described it to my Dad this often happened on hot days. The thing with it any time I had an awful migraine different GPs said we’ll follow this up further and then I didn’t have any problems for a six month or longer period. We also moved about quite a lot. As I got older my migraines were blamed on the pill so I changed this a few times but I also have endometriosis and a while after that was diagnosed with IBS- they all have overlapping symptoms and now I am going through premature menopause. I am going to be 37 in a couple of weeks and this section of the journey really began shortly after I turned 34.
In 2014 I went to my GP a lot because I knew my body well enough to know something was really not right- I had been to an Accupuncturist as an alternative to the GP and they hadn’t really wanted to treat me when they examined me because they said something wasn’t right and I needed to go to the doctor. I had hangover symptoms a lot- this was around March then I had extremely erratic but heavy periods this lasted through to August but I was coming to the end of a 10 month film job- very very long days and drives. Through August I was so tired and super light sensitive. I then started to be concerned I was having an ectopic pregnancy/ cyst from endometriosis because I was in so much pain and rationalised that this was the cause as this had happened before and the symptoms were the same for me. I saw my Gynaecologist as a private patient in October who established I was not pregnant and had problems with abdominal inflammation. I was horribly tired, I had never been so tired and could not really understand it as it was like nothing I had ever known and no amount of sleep could solve it. My partner fitted black out blinds for the light sensitivity in our bedroom. I then went to see a nutritionist while I waited to see my Gynaecologist again, they suggested that I did an adrenal stress test and a saliva hormone test. I did this. By now this was early December 2014, I was due to have a Pelvic MRI and bloods to determine what the inflammation was and the pain. I remember really looking forward to the Christmas break to be able to rest then I had a terrible sight affected migraine that laid me out for two days then my period came. Towards the end of that, two days before the Christmas break at about 2pm I was in town shopping for work I was getting fabric samples and trying to get back to the studio to meet my colleague before a production meeting. After deciding to skip lunch I remember going into a tailors on Savile Row to ask to see their fabric stock…I remember then after I started speaking to the sales assistant thinking wow your voice is weird Laura and I remember putting my hands up to the light and saying out loud " wow look at these hands, they’re so big hands as big as spades, do excuse me, I’ve never seen such big hands"… then luckily he didn’t have to reply to that. I had my first grand mal seizure in the shop and woke up apparently 20 minutes later with a chewed tongue and a London Ambulance person asking me my name, the date and taking me to Guys and St Thomas’s in Westminster. I had a second seizure later that afternoon/ evening at home after discharge trying to select something to eat with my two brothers. They got me to hospital and there I had an MRI scan where the AVM was found. It was explained to me then and since that hormone fluctuation in my case has probably affected my AVM, I was on the 4th day of my period. Nobody has said anything definitive about this or put it in my notes but it has been said verbally. The hormone test done by the nutritionist put my hormone levels at those of someone entering menopause and when I showed this to my Gynaecologist he referred me for tests whose results confirm this. Looking back at the things I learnt were the headache and period diary I kept in the years before were invaluable in the months after diagnosis. Also my instinct to use different therapies to manage was also helpful- even if it helped with my anxiety levels. I also have learnt that being persistent and questioning with health professionals works although some do not especially like it and having a wide range of reading material is good. I read Nature, New Scientist, Scientific American reports I could find from the BMA and the Lancet. I also read and listened to anything I could find via the BBC so that I had information I could compare and contrast from sources that Doctors read and would understand. For the time up until I was treated I noted everyday in my phone what painkillers I took and for the time after surgery for about a year. This meant I did not go to A&E or to the G.Ps with vagueries, it also meant that my partner could tell them if I was incapacitated what medication I had taken. The thing that I learnt is that I had overlap in my symptoms and it was confusing to pick apart for the people treating me but I had to be an active participant and treatment had to be done with me not to me for the best outcomes.
Hi Jessica,
Yes, this sure is a good question.
My AVM symptoms came when I was older in life.
I was home from work one day, with what I thought was
the flu. There were severe stomach problems, and headaches,
and when I went to see my doctor, he was too busy to see me
and I got a nurse practitioner. I was given an IV while there,
and then sent home. That seemed to do the trick, and I was better,
and went back to work. But every two or three weeks I would get these
strange headaches, to sleep seemed to be the only way to end them.
This went on for a year, and then I had my AVM cerebral bleed that
came very close to killing me. After I barely lived through all that,
the headaches never returned. I know it was connected, and that
it should have been caught when I had the first headache problems.
I hope this helps someone else.
Hi Jessica,
Before I was treated and found out about my AVM, I had a lot of dizziness, headaches, and sometimes my vision wavered.
I too believe I always had this whoosh sound in my ear, but didn’t think anything of it. I guess because I didn’t think it wasn’t supposed to be there. I remember having “sick headaches” as my mother said. Get irritable, couldn’t tolerate any noise or lights. Then I would throw up. It seems like when I threw up it relieved some sort of pressure. Then I would sleep. I also remember sitting in my desk at school and feeling like I was falling out of the chair or like I was going to the right side. I also used to get extremely dizzy when I got up from bed. I ran right into a wall one time, because I couldn’t see. My vision went completely out. When I got older I was always so tired. I went from one doctor to the next trying to see why I was always so tired. First I went to a GP. He referred me to a sleep disorder doctor, who referred me to a hematologist, who referred me to a cardiologist. My ferritin was extremely low, had to get an iron transfusion. That was probably caused from giving blood every 8 weeks. Seemed to fix the problem for a while. But I was still so tired. I knew something was wrong with me but I just did not know what. I started to have severe headaches almost on a daily basis. One of my co-workers told me one day, “It’s not normal to feel that way. You need to get yourself checked out.” Had no idea what the real problem was until I had a grand mal seizure at work one day. They took a CT and MRI and discovered it. I don’t know which I was more. Scared or relieved that I finally knew was going on so that they could fix it. Pretty much all the severe symptoms that I was having is a thing of the past. I feel so much better now.