Side effects from AVM treatment

Peripheral vision changes
Sensitivity to light and my hearing
Hair loss
Nausea/ loss of appetite
Headaches more painful and migraines more frequent

My experience so far. I've booked in with the doctor in January to discuss meds for the headaches and migraines as paracetamol and ibuprofen don't touch the pain. Cocodamol helps but not permitted to take for more than three days.
Anyone else experienced similar side effects?
Hannah x

Hi Hannah! My AVM and Aneurysm was obliterated in February, confirmed in November. I do have vision loss in one area in my left eye, and I was sensitive to oncoming headlights and my perception was off a little. It has improved considerably, and I can now drive in the dark. However, I need reading glasses now which I never needed, and my right side hearing rings at times, or just plain pops out (like being in an airplane). This too has improved. I had a loss of appetite, but I think that was more a side affect to the seizure meds, and that is improving as well as I continue to wean off the meds. One day at a time! December 28th will be my one year mark since my emergency hospital stint....I'm grateful it was diagnosed and treated as I am still here. Hope this helps.Happy Holidays!

I remember that shortly after my hemorrhage I had vision changes in my left eye, but it almost fully restored itself. As for headaches, I get them almost every day. There was a period of several weeks where I didn't get a single one, but typically I get them 3-4x a week. It's been a year and a half for me since my AVM. I have pretty much given up on anything but advil. I hope this helps.

My daughter was seen at a headache clinic. Interestingly enough, doctors started with

vitamins. It hasn’t eliminated headaches, but it’s definitely reduced the frequency. Then we have a simple cocktail of meds we use when the pain is nearly unbearable — sprix (nasal toradol and over-the-counter Benadryl). We’ve been on this system since Thanksgiving, and it’s allowed us to avoid emergency room for pain relief since then. … My daughter also got eyes rechecked and now wears glasses full-time. The combination seems to help so far.

Hi Hannah:

I had the exact side effects you describe after my rupture and before my Radiation treatment. After Radiation, most side effects got better, but the daily headaches continued. They were not migraines, but were a dull nagging daily pain. In the hospital they only gave me Tylenol for pain and that did very little. I continued the Tylenol (extra strength) when I got home. I relayed this to my doctor and she did not like the Tylenol thing one bit. I had been on 25 mg. of Elavil (a migraine preventative), for a number of years and it worked. My doctor decided to increase the Elavil from 25 mg to 35 mg and lo and behold, the daily headaches are gone. I occasionally have a headache for which I take one extra strength Tylenol. Some days I need two. The daily headaches are no more.

Thanks Sharon, I've got an appointment with my doctor next week so I may suggest Elavil if that has worked for you. I get a dull ache regularly and am only trying to take pain meds once a day if I can. I got a migraine on Xmas Eve last week. I've also been advised by one of my colleagues that her headaches went away when her wisdom teeth were removed, and I know my left one is very close to a nerve which may contribute to some of the pain I am having so I'm planning on speaking to the dentist about that as well.

Thanks Tina. I've got an appointment with my doctor next week so I'll have to wait and see what they say. Over the counter meds aren't really working apart from cocodamol and I can't take that too regularly. I already wear glasses full-time as I'm short-sighted and have worn then since I was 10. I was only re-examined this year so I can't think that it's the prescription that needs changing.

I haven’t started my GK yet but I get really regular episodes of partial visual loss because it’s in the occipital lobe. They’ve said it’ll likely get worse after embo and GK. hopefully your symptoms should subside soon and you’ll be able to get on with life. Good luck xx

Hello Hannah, I see that you had GammaKnife. I I also had GammaKnife a little over seven years ago for a ruptured AVM in my right parietal/occipital lobe. I had double vision, painful headaches (I was very reliant on percasets, and it did was cause me to sleep all day and night)and my appetite was low. In about a month after my procedure things did get better. My double vision did get better, but since the rupture was on my occipital lobe, and eye nerve was injured, and now I have no peripheral vision in my left eye. I hope that helps, and I wish you the best of luck in your journey.

I have now been prescribed propranolol for the migraines and headaches, 1 month to try it and see if it helps. So far only take one lot of paracetamol today which is positive :) They don't know why I am so tired or why I keep getting headaches and migraines so much, so I've also been put in for some blood tests next week. Hoping that results are positive and I can move forward with this!

Hello Hanc,

I had GK as well, then about 6 months later I began getting no the symptoms that you are currently experiencing. By the time I went to the emergency room I could barely walk or see. After a CT scan I was told that my brain was seriously swollen and was diagnosed as radiation necrosis. After steroid treatment I got better thank God. Hopefully this isn’t ur case, but ensure that your team does a CT or MRI just incase.

I have my review with the doctor booked in for next Wednesday where I will discuss the propranolol tablets they have put me on. I've been on them for about 2 weeks now. I see so much about there being overrun staff at the hospitals I feel like I'd be a burden if I ask for a scan and they'll think I'm being a hypochondriac, but you know your own body don't you?

So my hair is growing back :) I'm so happy! My headaches are still odds and sods, but I've been learning any potential triggers and avoiding those, taking more breaks from looking at the computer at work, attempting to drink more water but it's turned into more mint and fruit teas at the moment! My work has been very supportive throughout my journey so far and I have found this site very valuable in looking at other people's experiences and also giving feedback about my own.
Thank you all x

If hydration seems to work for you and you want to try something different than plain water or fruit and herbal teas, I have some pretty good recipes (very simple ones) to make various kinds of fruit water. One of my favorites is cucumber water - just slice up a cuke, drop the slices into a large pitcher of water and chill for 2 hours. The cucumber gives the water just a hint of flavor.

I'd be happy to send you the rest of the water flavoring ideas if you'd like, just let me know.

HI, Yes I've seen things like that trending on social media to keep fit as well, it gives the water a bit of flavour really. I've tried cucumber water with a hint of mint as well which is different but still nice :) shame there's no gin in it haha!