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AVM Survivors Network

Hello, my name is Harry

#1

Hi all, :slight_smile:

I thought as I’m new to the community I’d say hello and talk a bit about myself, whilst also asking for some advice

My name’s Harry, 31, and I was found to have a grade 2 AVM in the right occipital area of my brain around 2 years ago. This was when I went to the GP after I suddenly started getting migraines lasting days at a time every few weeks. Before this, I very rarely ever suffered from a headache, and never a migraine before. The neurologist offered an MRI just in case, based on the uniform nature of my aura, always losing vision progressively from left to right, every time.

Last June I underwent stereotactic radiotherapy at Sheffield Hallamshire, and am now just waiting for the 2 & 3 year MRI dates to see what the progress is.

Now for the advice request.
I recently have requested to change neurologist, as I moved from Bristol to Reading, and I now have to wait until August to have my checkup appointment which was due in December, leaving me with some unanswered questions.
Initially when diagnosed I asked my GP, and my neurologist, about my sessions at the gym, both of whom said not to worry about it and to continue as normal. Since reading these forums I can see that a lot of people are advised the opposite - I guess this is due to increased blood pressure?
Recently I have been struggling with my sessions at the gym triggering my aura and migraines, but still have been advised by my neurologist that this should improve over time and not to be concerned (I emailed him in November about this but received a fairly short response to a concise but lengthy email).
I’d really hate to stop going to the gym, as I’ve been working incredibly hard over the last few years to go from skinny to fit, and it’s played a vital role in helping with staving away depression.

I’d really appreciate any insight any of you have into this, especially if there’s anything specific to the location of my AVM, or any reasoning a neurologist may have said that I should continue to work out.

Thanks,
Harry M

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#2

Hey Harry,
Moving to Reading, with your neuro being in the north, wouldn’t London be closer?? Would you be able to possibly get a referral to a neurology department in London. Considering you are having symptoms, I would be suggesting you may want to be having a follow up ASAP, even if it is only to be told all is OK and it’s ‘recovery pains’.

I completely understand your gym playing a vital role but if it’s triggering symptoms, then I’d be looking for a follow up elsewhere. Even if you showed up at A&E with a migraine, with your history, they would at the very least do a scan to check. This may well put your immediate concerns at rest. If the A&E was in a London Hospital with a neurology department, they may possibly make a referral to their own neuro team. Might be worth a try.

Merl from the Moderator Support Team

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#3

A quick hello and welcome! I don;t have too much to add in the way of advice but have had Gamma Knife back in November 2016. Recently advised that my AVM obliterated. I would certainly dot he follow up with neuro, and I hear you on the gym associated to well being. I was allowed, post bleed, to walk only. So I started walking! After about 2 months or so I could bike, light jog and light weights, no straining. Once I had gamma I got the do whatever you want word so I started going much harder, as my body would allow. I did have to back off for sure but slowly, and that was the key -slowly, kept at it. It took a lot of time. Take Care, John.

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#4

Harry,

The main thing is no straining. It’s a good thing to keep fit (so they tell me :wink: ) but that’s different from pushing weights. I’d say keep it really sensible (much less than you’d like) like John says but play the longer game. Tortoise rather than hare.

Gamma knife works really gradually, so nothing is fixed yet and you don’t want to be putting pressure in places where you want the gamma to close it off. It’s going to take you maybe 2 years to get to sealing it off, not 8 or 9 months.

Very best wishes

Richard

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#5

Coming at this from a migraine prespective:

One theory is that exercise-induced migraines might be due to what is essentially pressure going from your chest to your brain via your venous (vein) system.

Considering your AVM history I would have to assume this is a very bad thing to have happening/be doing. Migraine people are told if exercise brings on a headache it is important to see your doctor so more dangerous issues such as subarachnoid hemorrhage and vessel dissection can be ruled out. You already know you have this!

I understand about being fit and all that but you have to be careful as well. I’m not sure your concerns are being taken seriously enough. After 30+ years of migraines I know it’s often hard to get “headaches” taken seriously, even with a serious history like yours.

Now, you can do things to help avoid triggering a workout headache, assuming it’s not because of pressure in the veins:

Eat – at least an hour and a half before exercising, leaving time for your body to digest the food – this will avoid a low blood sugar level which can trigger a migraine*. You could also take glucose sweets to maintain blood glucose levels prior to exercising. Drink – fluids before, during and after exercise. You may want to have a snack while working out as well.

azurelle

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#6

Hi Harry, I was diagnosed with an AVM and Aneurysm last June, after a tonic clonic seizure. I am awaiting Gamma Knife. Having been a Fighter in MMA, Kickboxing, boxing and Judo, the gym has been my life. I went from fighting to teaching, but the gym remained a constant factor. After my seizure and starting my recovery, not being able to go to the gym, hit me really hard. Then using my Knowledge and help from my physio, I started training again. You just have to keep it slow and light, keep the weight light, steady with the cardio. Inform people around you in the gym that you have a medical problem. I find doing a little is better than doing none. I actually live in the Reading area and find the whole training, being at the gym really helpful. Good luck mate, hope you sort it out…
Mick

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#7

I have to wonder why so many AVMs are found in June. Mine was, as well.

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#8

Hi Harry. I’m afraid this is one area where, in my experience different people (including neurologists) give different opinions. Personally I have been told that exercise if okay but over-exertion especially straining (as with doing weights) isn’t. Also when I had my children I did so by C-Section as my doctors were worried about the effect of labour and pushing on my AVM.

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#9

Hi guys,
Thank you all very much for all the replies, I’ll try reply to all of you here;

Thanks Merl, just to clarify my neurologist was in Bristol, I just had the gamma ray surgery in Sheffield. I’ve started the process of getting referred to my nearest hospital (Royal Berkshire), so hopefully that’ll make things a bit easier :slight_smile:

Thanks John, happy for you that you recently got the all clear! When diagnosed mine hadn’t bled, so maybe that’s partly why I was told I could still do the gym, but as you say I think I need to take things really easy in there, which is a shame, I was pushing myself a lot, even if I was holding back a bit because of the possibility it would trigger. The last two sessions I had both triggered migraines and I had barely gotten started though. Great work keeping that steady and strong mindset and taking your time, I hope I can keep as clear minded as you.

Hi Richard, haha yeah it will be quite a lot less than I’d like, but I guess it just has to be done, so yes, tortoise mindset incoming lol.
In regards to the pressure I have been putting on it, do you think there could be a chance it would be hindering the work the gamma knife is doing? I did ask my neuro about this in the email I sent off, but as I mentioned before I got a fairly short reply which didn’t really specifically answer the question.
Thanks

Hi Azurelle, this is great advice, and I completely agree, warming up is also really key to help prevent workout headaches. Unfortunately I’ve been doing all of this so I think it must be AVM related. Yes, I do wonder whether my neuro was taking my concerns seriously, hoping that my new neurologist will be a little more thorough with my queries, but we shall see. Sorry to hear that you’ve had trouble with people taking your health seriously, I’ve actually been quite fortunate on that front with work, friends and family.

Hi Mick, thanks for the advice, it’s good to hear that someone who was so active and involved in physical fitness and training still managed to keep that aspect, even if you did have to switch it up a little. I bet that really hit you hard, well done for keeping at it, I guess if your aneurysm was last June it’s something you’re still working through?
Letting people at the gym know about it is a really good point, I’ll make sure I have that conversation.

Must be the weather! :stuck_out_tongue: I think I found out about mine around then too, I remember it being sunny after the MRI at least, think that was end of Spring.

Hi Lulu, yeah that’s what my research (and now this thread) has been showing me, it’s a shame really because I’m sure I told my neurologist that I was lifting weights. I never thought it could affect childbirth before, but that completely makes sense, that’s a lot of work :smile:

Given what some of you have said here I think I’ll visit my GP, or see if I can get into contact with my new neurologist, and see if they can push for an MRI to make sure everything is okay up there. I didn’t realise that a migraine could cause enough concern to have a scan, I’ve had quite a lot from gym sessions. I’ve currently stopped going for the time being. I think I’ll take a little break before going back, but just do some light maintenance, no heavy lifting or strenuous workouts, but that’s going to be a challenge for me. I think I’ve found something I can replace it with outside of work, which should also help with the mental health side of things.

Thanks again to all of you for your replies and advice :blush:
Hope you have a good day all

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#10

Thank goodness you can have an MRI. My surgery was done in 1973, metal clips up there. No MRI’s for me.
Going to the gym is good for lots of things-keeping your blood pressure down.
Let us know how iit turns out, okay?

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#11

No idea really, so “yes”!

I have a dural arteriovenous fistula and one of the theories behind those is that they are acquired or developed rather than congenital, and we know AVMs if not 101% closed off can re-form. But the cause of DAVFs is thought to be overdoing it one way or another, e.g. a blood clot or narrowing of a vessel somehow being the stimulus for the AVF to form, or straining or high blood pressure or something.

So… I’ve no idea but personally, I’d cut out any straining immediately and just keep “fit” rather than “built”. If you’re 30, exercise as 50, something like that. I do think the gamma works over such a long period (and I don’t understand how it works) that so long as you’ve not encouraged your AVM to grow into spaces that were not zapped, the zapping will still get all of it.

I’m 50, so I’m busy exercising like a 70 year old… a very sedentary 70 year old!! :rofl:

Honestly, that would not be good for me, but I did notch it down to pretend I was 60.

There’s no point in racing now and spoiling 2 or 3 year’s waiting by not going fixed. But not keeping moderately fit wouldn’t be good for you, either.

Somewhere is the right balance.

Richard

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