Crippling headaches since 2018–potential causes?

Symptoms & Treatment
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Hi,

(sorry for the long rant TL;DR: could alcohol and/or caffeine be the reason I’ve had chronic headaches since 2018, or is it more likely that the culprit are my two 2018 concussions paired with my 2014 moderate TBI? Also, why does vitamin B2 no longer work to prevent them??)

I had a right subthalamic intracranial hemorrhage in 2014 that caused 2 brain AVMs to rupture. That’s when doctors also discovered a third, intact AVM. I had hemiballismus for about a year, but after intense physio, occupational and speech therapy, I made an almost complete recovery. My two ruptured AVMs no longer show up in MRIs—they’ve completely healed—and my intact one shows no sign of growth. For these reasons, my neurosurgeon doesn’t take my complaints seriously. I had two concussions in 2018, and ever since, I’ve had daily crippling headaches. Vitamin B2 used to help, but it no longer does, so I’ve stopped taking it. 2018 was also the year I started drinking alcohol (because it was the year I turned 18 and my previous neurosurgeon told me I was “completely fine,” giving me the green light to resume normal activities, including taking Advils and consuming alcohol). I think coffee makes my headaches worse, so I should stop drinking coffee, but could alcohol be a culprit? I know people with brain AVMs really shouldn’t drink alcohol, but my neurosurgeons never told me anything about my condition. Last time I saw my current one, he spent 5 minutes going over my last MRI scan and told me I’m “perfectly fine.” I was so frustrated because there was absolutely no follow-up to the list of concerns I had last time I saw him, which included really bad balance issues that I think keep getting worse?? I tried telling him about my headaches when he VERY CASUALLY told me “yeah so your brain AVM has a 0,5% chance of rupturing, in which case you should go to the ER right away,” and I had to ask him how I would know. Of course, he said “you’d have a really bad headache.” Maybe I wasn’t making myself clear when I told him “I ALWAYS have a headache” because he completely brushed my comment away and showed me my MRI scan again to prove that I’m “perfectly fine” and “have nothing to worry about.” I was never told what could increase the chances of my AVM rupturing because he said I shouldn’t prevent myself from doing any activity that I would normally do.

Sorry for the rant, maybe I never should have googled my condition because nearly every source says that the percentage of AVM ruptures is 1-2% PER YEAR, and I wasn’t told that the likelihood increase with age. I mean, I guess I always had a feeling that doctors were hiding something from me and since I’m otherwise “young and healthy,” I’m never taken seriously. People don’t expect able-passing individuals to have a fucking brain AVM, I guess. You should have seen the looks of surprise on the faces of the doctors who gave me a neuropsych eval when they read about my academic achievements in my file. They concluded that I have a very mild neurocognitive impairment, but you wouldn’t be able to tell by looking at the work I do with my student newspaper. I’ve learned to live with my word recall difficulties and my short term memory loss, but I just wish doctors didn’t automatically assume I’m fine simply because I appear to be.

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Hey Sope,
Firstly, Welcome to Ben’s Friends. There’s lots of good, knowledgeable people here.
Secondly, don’t be too worried about the rant (Well, I wasn’t :wink: ) we all need to let it out and who better to let it out with than people who have been there, Us. If you don’t let it out the pressure of it all can build and build, becoming explosive. And that’s no good for anyone.

Now, I must say you are not the first and you won’t be the last to be told “The scan’s OK, so you’re OK”, despite your symptoms telling you otherwise. A lot of medicos concentrate much more on the scans than patient reports. I’ve found this to be the case especially for those of us with past neurological histories ie neurosurgeries, AVM’s, aneurysms, haemorrhages etc. And as for headaches, as one Dr said to me ‘Well, everybody gets headaches…’ I wanted to cause the man some serious injury at the very second he said that. Some of them really have no clue just how bad BAD can be.

You ask about ‘Potential Causes’ and the honest answer is a list longer than your arm. There is no one single cause, there is no single trigger and because of this there is no one single answer and no single cure. OHH MAN, don’t I wish there was, I’d give my right arm for a cure. But, alas, I haven’t found one yet. Could it be caffeine? Yes. Could it be alcohol? Yes. Could it be the haemorrhage? Yes. Could it be the AVM’s? Yes. medication? Yes. And could it be a combination of each and every one of these?? YES. I’ve also found that environmental things can have an impact such as bright sunlight or loud noises or too much activity etc can all be triggers. I’ve often explained it like this:

"Dr’s like the simplest theory A+B=C. So Symptom A + Symptom B = Diagnosis C. But for me that’s way too simple, it’s more like A+B-C/DxE√F… And every one of them is variable. I just never know what today will present.

I have had 6 neurosurgeries and also have shunt (a plastic tube) to drain the CSF from my skull, my last major neurosurgery was in 2013 and I’ve been a seesaw of symptoms ever since. I don’t get headaches, I get bolts of agony sent from the gates of hell. I had a nurse ask me to rate my pain out of 10, I said 15 ‘Ohh, it can’t be that bad’ she says. They really have no clue. I have a good friend who told me the worst pain in the world is a toothache. Give me a toothache any day compared to THIS. But then I thought, if the worst pain he’s ever had is a tooth ache then that’s as far as his pain measure can comprehend. Also, if you hurt your arm, it affects your arm. When it’s your head it affects EVERYTHING. Some people will never understand this.

I’d been having odd symptoms for many years before a true diagnosis was made. Then they operated and I was given the ‘All fixed’ speech, only it wasn’t fixed and 3 months later I was back having further surgery and again I was told all fixed. Something wasn’t right and I queried the medicos, they didn’t like me questioning them at all, so I went looking for my own answers. I went to more dr’s than I care to remember and ended up with more diagnosis than I can count on my fingers (and toes). I exhausted every avenue open to me,tried every suggested treatment therapy and/or opinion. If there was an answer I wanted it, but I still haven’t found my ‘Key’. I too have been given all of the percentages, been told all of the theories from their textbooks. The problem is I’m not in their textbooks. I don’t fit their theories, so now what? And they have no answers.

I have learnt that I have to manage all of this for me and the reality I’m ‘trying’ to manage around, not their books nor their theories. I have a few ‘management tools’ I try to use. Firstly is a change in activity. If I’m outside it might be bright sunlight. Go inside. If I’m doing something physical it might be too much, so I’ll change my activity. I have some medications, some lesser, some stronger. I’ll start with the lesser, if they don’t work, I’ll take something stronger. If nothing is knocking the headache, I need a bed in a dark, quiet room. These are some of my management tools, but it has taken me years of trial and error (and error) to work out what works best for me and over time you too will work out what works best for you.

Look, others are going to have views and opinions. This includes everybody from the medicos to friends and family but to be rather blunt, this is about you, not them. None of them can feel your pain, none of them know your symptoms and as much as they may all think they know…They don’t.
That line of “Ohh but you look fine…” if they could only see, I have this man with a sledgehammer trying to bash his way out of my skull, but I look fine?? I must be a damn good actor then.

We know this because we’ve lived it too, so come talk to us.

Merl from the Modsupport Team

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Thank you for sharing your story, that sounds terrifying! I’m really lucky to not have needed any surgeries, but I can relate to the medical gaslighting. Headaches truly do affect everything and I am aware of my light sensitivity (I wear sunglasses indoors when the lighting is too bright, which is kinda annoying, and I have been told that can actually increase my light sensitivity in the long run, but we make do). I guess looking at statistics can’t really tell us much since they don’t account for individual differences, and I’m not sure if I would want to know if I really had an 80% chance of dying before the age of 40, as so many sources claim. I would like to know if there’s anything I can do to prevent my AVM from rupturing but at the same time, I don’t want to waste time worrying about that. I tried emailing my neurosurgeon’s office concerning my headaches, but they ghosted me. I’ll just keep managing the way I always have :upside_down_face:

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Hi Sope, no worries on the rant, most of us do it! I had a bleed back in 2016, when I found out I had an AVM and what one was. I’ve had gamma knife since since then and it’s now obliterated. A few deficits form the bleed but not “visible” and I am adept at hiding them. Mine are mostly associated to speech and a bit of aphasia, but just about gone. It does show up once in a while.

Most people don’t understand what they can’t see, or haven’t experienced. I think of saying I was tired during my recovery and friends saying they were tired to. They didn’t understand the whole new realm of fatigue I was experiencing! I have had some headache issues in the past, and often for me it was due to hydration issues. More precisely getting dehydrated. When I paid more attention to water and I take sport electrolytes regularly, it has helped a lot. Alcohol and caffeine contribute to dehydration, and for me impact blood pressure, which is connected to higher risk in brain things!

I don’t want to suggest that your headaches may be related to what I think was causing mine, it is a complex world and only want to pass along my experience. There is no straight lines in the brain! We have some members who battle with headaches extensively and I will leave up to them to join in the conversation. Take Care, John.

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Thank you for sharing your experience! I actually have low blood pressure, and I know my blood pressure drops when I’m dehydrated, which can worsen my headaches, so that’s a very good point.

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Hey Sope,
You are an individual with individual circumstances. Statistics are over a whole population, they never take the whole ‘You’ fully into account. I’ve learnt never to take the stats too much to heart. Even medical opinions aren’t a promise, I consider both to be ‘educated guesses’ at best. I too was given such figures, at the time my thought if I got to 30 it would be a damn miracle anyway, and here I am steering down the barrel of 50 :astonished: So yea, don’t be holding stats as a true measure.

I think the best advice is ‘Be aware, not alarmed’. Initially, post surgery every ache, every pain and I was thinking ‘…is this it?’ and the wife was ready to jump in a heartbeat, but over time I have learnt what is normal (as if any of it is normal) and what is a sign of ’ ACT NOW!!!'. What I look for now is more a progression of symptoms. A headache, even a bad headache, that’s normal. One sided tingles in my hands and feet, odd, but not unusual for me. But if those tingles start spreading and I start feeling nausea, bad nausea and a sudden extreme headache, I need to act. These are some of my signs there’s an issue, you too will learn your signs.

Merl from the Modsupport Team

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Why you had 6 surgeries?

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Hey Rafa,

Why? That’s a very good question.
Initially, they did a CT scan (Only major metro facilities had MRI at the time). This showed a mass of fluid, CSF, so they inserted a shunt, a plastic tube, to drain the fluid. I was given the ‘All Fixed’ speech, only it wasn’t. Sure, they had reduced the pressure inside my skull, but they hadn’t established why that pressure was building in the first place. Why wasn’t that fluid naturally draining? Turns out that they found a growth, an astrocytoma, which was putting pressure on the aqueduct, the natural drain, and blocking it off. So, they decided to operate again. It was established that the growth was a bit too close to brain structures I needed, they couldn’t remove it all safely, so, via a craniotomy they reduced some of its mass. And again, I was given that ‘All Fixed’ speech.

My symptoms post craniotomy were crazy. The medicos were making out it was all me ‘It’s got nothing to do with us and what we’ve done. It must just be YOU…’, so I pushed myself to recover, but I pushed too hard, too soon landing back on the operating table as a result.

Then there were issues with the shunt. The shunt is made up of 3 components the tube into the brain, a valve and a tube into the peritoneal (the intestinal cavity). Firstly, the shunt blocked, so they flushed it thinking that this would clear the issue, only it didn’t. When the shunt was initially inserted the ventricles were HUGE, the shunt reversed this, reducing their size but the reduction caused the tip of the shunt to be lodged in the grey matter and the only time it could drain was when the pressure built up to such a point that the tip was clear. So, I was going high pressure to low pressure, high, low, high, low… I was on a seesaw of symptoms. When I was laying down/sleeping the drainage was minimal and the recommendation I was given was ‘Well, don’t laydown for too long…’ :astonished: :roll_eyes: That’s not an answer.
But life goes on.

The shunt tubing is plastic and deteriorates over time and the lower tubing ‘fractured’, it broke and the tubing migrated into my peritoneal cavity. They operated and replaced the broken tube. Then they found that the valve had failed, causing excess drainage and a condition known as ‘Slit Ventricle Syndrome’. The medicos thought maybe I didn’t need the shunt, so they operated, drilled a hole in my forehead and put a pressure gauge inside my skull, turns out I do still need the shunt. They operated again removing the pressure gauge and replaced the entire shunt train, in doing so they have left the former shunt’s brain tube in place, so now there’s 2 tubes in there, one working, one failed. The tube that migrated to my peritoneal was causing it’s own issues, so they also went fishing for that, but that was a simple day surgery procedure.

So, that’s why I’ve had the 6 surgeries.
Merl from the Modsupport Team

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Wow what a story brother

So do you have an AVM residual or not anymore?

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Wanting to bring the conversation back to you, Merl is your man when it comes to TBI. In fact, we have a whole separate community of TBI patients if you ever want to be part of that.

Do I think your headaches could be related to alcohol and caffeine? Maybe. Would you consider it easy enough to have a go? When I was waiting for my embolisation procedure and feeling less week by week, one of the docs in the Emergency Room said to lay off coffee, chocolate, alcohol, smoking and such things and I can say it did take the pressure off – I did feel better – though my AVM dermed like it was developing pretty rapidly so it only felt like a cure for about a month before I was still regressing to less well. But, like I say, I think that’s because my AVM was progressing rather than it being a futile thing to try. Try it if you can. I get that it isn’t always easy.

I’ve stayed off coffee (or caffeine) ever since. I’m sure caffeine doesn’t do us any good. I can honestly say I get almost no headaches these days. Some of those may be attributable to the see saw of caffeine in and out but it won’t be the only thing. I keep myself better hydrated overall than I used to, as well (and dropping the alcohol is good for that as well tbh).

If you can, give it a good go. I think it’s worth it.

Richard