Sorry, I havent been so active on this site lately. Hope you all are keeping well.
Wondering if anyone have any advice for me - I had headaches all my life, in fact my AVM was discovered by one incidence of strange headache in 2011. I had Gamma knife and a follow-up angiogram in late 2015. I have never felt full of energy (since GK treatment) and always wondered and admired people who are active and cheerful all the time! I had an odd occurence of a bad headache episode up to 3 months ago but life has changed since, I now have everyday (almost!) headaches and feel extremely tired.
My neuro have signed me off after successfull results of Angiogram so my GP is not keen in doing any more scans. He just thinks these are migranes but they feel very weird, no particular pattern - sometimes from the front, or the back, sometimes shooting pains and its the side one which worries me most (I remember having these headaches when I had brain swelling)…one part of me wants to push for a scan for the peace of my mind but other says just calm down and move on with your life…and try some migrane medication(which I’m very skeptical about as I didnt have a good experience in the past)
In fact re medication, I have a very strong view that I can bear headaches but not the side effects of these medication as I tried a few in the past(topamax being the 1st one) and it just made me not function (or malfunction) and with other side effects which just feels weird.
Any advice anyone has?? I shouldn’t be suspecting brain swelling or something equivalent to that BUT who knows what else is going on inside? GK left my AVM scarred and I have read that in some cases brain doesn’t accept dead mass inside the brain?? Any experience or suggestions?
Hi Ky, This sure sounds familiar to me. I have been living with almost constant headaches since my rupture in Dec 2013, And yes tiredness most of the time, For me here is what I did :
1: Get more sleep - Going to bed early every night - This sucks but it does help.
2: Ask my doctor (GP) to be referred to a headache clinic (I’m UK Based - Scotland so not sure if you have this option) - They prescribed to me Migraine preventatives called propranolol and I take 2 x Codeine based pain killers first thing in the morning every morning this is when my headaches are worse and these 2 help me get my day started.
3: Try keep calm and relaxed as much as possible and try not let my heart rate get high as these are things that will not help headaches.
4: Limit Alcohol intake - Limit not cut out - I like to have a beer every now and then but these days its not worth having a hangover on top of a “normal headache” lol !.
I hope this little message can help you a little. Take care and note that the propranolol was the only thing here that helped and made the headaches more bearable, The didn’t go away but I can operate fine with the help of that med. Thanks.
Thanks Martin for the tips, I did go on propanolol as well but have to admit I’m not liking the side effects, it gave me weird chest pain and lot more drowsiness/tiredness feeling. I’m getting out of breath very quickly. My GP asked me to take it for a month and its the 9th day and so far my experience is it’s not working for me. I’m in Dublin and have to ask for a headache clinic if it exists here. I took Codeine too for pain killers but i couldnt bear the side effects. I’m ok with Paracetamol’s as such but I feel by taking these pain killers is there anything which I’m not listening??
As far getting more sleep is concerned, I sleep for good 8-9 hours on an average and sometimes upto 10 hours on the weekend and I don’t take alchohal either (my husband says I need to start taking it )
Thank you Martin, those are wonderful tips though, i could help myself by staying calm which I have to admit I don’t - its not in my blood (lol!!)
I’ll keep taking propranolol and see if it makes any difference to me. Glad that it worked for you. Good luck!
I am lucky to not get headaches really (only one ten years ago at the time of the bleed), but I deal with tiredness everyday. However, while I perceive the feeling as “tiredness,” the correct term is fatigue. I, too, get 8-10 hours of sleep every night, but what a lot of people don’t realize is that sleeping does not necessarily fix fatigue. I remember when I started integrating back into doing school work, my teacher asked if I took a nap, not realizing that I wasn’t “sleepy”-tired. Most mornings, I actually wake up tired, but it is just mental fatigue.
I think the key is to be preventative rather than reactive to fatigue. Identify triggers and try to limit them in your life. For me, loud noises, light shows (e.g. strobe lights), or changes in routine (even transitioning from winter to spring) increase my fatigue. I try to avoid triggers as much as possible, or if I am going to be exposed to them, I schedule a few days off. (E.g. I went to a concert on a Friday night because I knew I could have lots of down-time on the weekend.) Stick to a structured routine as much as possible (maybe use an agenda so that you know what your week might look like). That way you can mentally prepare for events in advance and you might not be as run down when they happen.
Heheheh loved the reply !, I agree with your husband lol, but if the propanol doesn’t work there are alternatives of the same type of medicine and it’s designed to keep heart rate and blood pressure low so I can see how this would make you feel more tired , hope you find a solution take care
I can say since 2011 after surgery I still get headaches and a lot of tiredness daily… I’ve just learned to live with it and rest when I have my really bad days! I can confirm that generally when I’m stressed I feel my worst so trying to calm down is a good idea… if your wanting piece of mind and it requires a scan then definitely DO IT… I’ve been in this same position & it’s made me feel so much more better & confident after getting results everything is ok… God bless!
I’m not sure if you’re on any seizure meds but drowsiness is the number 1 side effect of all of them. I’ve been on a couple that made me sleep 15 hours a day.
Since I was a young girl I can remember having chronic headaches and at the same time tiderdness. I was diagnosed with Right Frontal AVM in April 2015 and it was surgically removed January 2016. So about 1 month after surgery I was overjoyded when I had about 2 months thereafter without headaches (the neuros said removing the avm will stop/improve the headaches). I was so thankfull, unfortunately that didnt last very long. So on this past Wednesday I went for my annual check and MRI confirmed that AVM is 100% gone!! Yeah!!! BUT I am still suffering with the same headaches all over again.So now I have to go back 10 May to see the Neuro with my MRI. My headaches are also all over the place… Front, back, sides, sometimes stabbing pains etc. I have to drink 3 x paintablets just to brake it. But I dont like pills (was on chronic epilepsy treatment since age 9), so I just try to deal with it daily. Consuming alcohol for me however worsens it after only a couple off sips. Personally I believe that my tiredness is due my headaches. And I can relate to not having the energy and liveliness of my hubby, my kids and my friends. l dont have any proper advise for you, but I am also looking for answers which I truly hope I will get soon. I will let you know if I do find answers. People dont understand, and I feel your pain! You know your body, just listen to it and if you require peace of mind, go for the scan!! God Bless!!
Hello! I also have headaches constantly after Gamma Knife and in no certain order or pattern. They can vary day to day. I had my GK in 2012, after that I was put on different migraine medications and became very ill so my gp took me off of everything stating I was overmedicated. I now see a pain management doctor to receive hydrocodone to help with my headaches. When they come on I usually lay down with a heating pad on my back and a ice pack under my head or wherever I need to place it, put a pillow under my knees and relax. I also am usually very fatigued regardless of how much sleep I get. I think that I wouldn’t be having these issues had I not had the GK, but when I found out about my AVM the doctors had me scared to death and rushed me into it. It didn’t resolve my AVM either and I refuse to do another round of GK. So I do what I can to take it easy and try to stay positive and not stress about things that I cannot change. I wish you the best and hope that you find relief. I noticed one reply was cannabis and that certainly is a great option if you have access to medicinal marijuana where they can find you a strain or edible that will help with your symptoms. Best wishes to you!
I’ve had migraines since I was 10 and have been getting headaches that are all over for a number of weeks, probably months if I think about it. I was dx with an AVM recently and have wondered about its impact on me. Headaches, pain, etc. Def find these headaches are very different than the migraines I’ve had for 40 yrs.
When I think back over the years of the many headaches and a vertigo attack I should have been diagnosed many years ago but I did not persue it. Had no idea that years later I would be facing brain surgery.
I started having headaches then migraines from the age of 13 until about age 55. My primary Dr. put me on 25 mg. of Amitriptyline (Elavil) and I haven’t had a migraine since. I’ve had headaches, but no migraines. Elavil works as migraine preventative and as a mild sedative which helps you sleep through the night. My AVM was diagnosed in late 2014 and headaches and tiredness became my new norm. I was given 2 Extra Strength Tylenols every four hours for pain. I had GK in April 2015, and my Neuro increased the Elavil from 25 mg. to 35 mg. in an effort to reduce my dependence on Tylenol, and it worked. When I do have a headache, I can usually get by on 1-Tylenol. The tiredness is still an issue. One lap around the Mall and I’m done for the day. My legs start to ache and my feet feel as if I’m wearing cement shoes. It is so hard to find the right combination of meds for our headaches. However, we can’t give up. If we do, the dam AVM wins and we are not going to let that happen! I wish you all the best.
and I don’t take alchohal either (my husband says I need to start taking it 
)