Hello everyone, since my frontal lobe left side surgery back in 2011 I''ve always suffered from headaches. They started me on all sorts of medication which helped but after a year I was still getting the headaches. It is coming upto 2years now and I'm still having really bad headaches, my doctors and consultants keep on saying take paracetamol 4 times a day but they don't work. Because of my disabilities and I'm a right-sided hemiplegi also I'm on Keppra for my epilepsy does anybody else suffer from really bad headaches. I'm wondering if any of you out there have any ideas or medication you take for the headaches apart from paracetamol. I'm a believer in positive mental attitude, any ideas or comments will be gratefully received.
Hi Darren,
Have u had an MRI? I too had headaches really bad, but before they found anything wrong, and I kept going to the doctors and they just kept sending me away telling me to take stronger panadol orbit might be my spine or neck and to go to physio. No one bothered to do a scan on my brain 
If u haven’t had an MRI, I’d be demanding one or a least a CT scan just to make sure.
Kind regards, Zoe 
Hello Zoe, how are you today? It's very windy here in England, I can't have a MRI scan because they clipped my AVM which are made of metal so they could move during the MRI. Seeing my doctor next week going to ask about a CT Scan, waiting for one of them on my right shoulder. If you don't mind me asking have you had AVM surgery or any form of treatment maybe we could share our headache and AVM stories. Do you have tingling in your face sometimes ? My AVM bleed my best option was surgery in which I'm very grateful because it saved my life, yes understand there will side effects also I'm lefted with weakness on my right-side. I have physio once a week, next session is tomorrow, do you have physio? Thank you for your reply Zoe. :)
Hi Darren I found out about my avm from daily headaches. After dealing with them for a yr where nothing took the pain fully away I went to my primary dr. They thought it was migrains and after telling them that light, sounds etc didnt bother me they finally did an mri. Thats how the bomb of an avm was dropped in my lab. That was December 2006 to this day after 2 emblozations and 2 gamma knife treatments my headaches are HORRIBLE!!! Before I could live my life work and for the most part "ignore" the headaches. Since the treatments I cant ignore the slightest headache anymore. My dr has me on topamax 100mg during the day and 150mg at night. Its sort of working. My hardest time of the year is November to April when the weather here in the US my area that is is snowny windy and very cold. It really messes with head. On the days where my head to horrible I take pain medicine called vicodine and that helps a lot! I have now heard that that botox injections along the hair line. Or I have recently heard from a fellow avm friend that magenisum levels can play a big role in headaches. She just started taking magenisum supplements. Perhaps one of these options is worth you looking into? I know come October I will start looking into something besides topamax because it isnt doing enough to keep my headaches under control. Best of luck to you I hope you get some relief because I know exactly how you feel :(
Hello Darren--
I am sorry to hear of your chronic pain and suffering--I just set up a GROUP that addresses OTC meds vs. prescribed meds to see what has worked or not worked for members on this website. I do not have any comments as of yet, but I was told that it can take a while to get a group going because there are so many. I hope to find helpful information for everyone!
I have suffered with chronic migraines since I was 4 years old--45 years now. For the last 3 years, I have endured 5+ migraines per week for over a year, and now 4 or more days with severe migraines and intense accompanying symptoms--I have tried so many meds, and none seem to truly work for all of the symptoms. I am seeking a doctor now to find something that at least helps me manage the pain because it is so excruciating!!
I wish that all of us could find a med that relaxes the mind and body, alleviates the pain, has no side effects, and helps us deal with those around us that we love--my AVM has changed my personality at times, I get very irritable, mood swings, no work, and taken away much of my hobbies and other things I enjoy--I know that it has for so many here also. My wife, family and I seek God's healing--even one good day here and there is a true blessing!! We seek healing and a higher quality of life every single day.
I hope that you receive some helpful information and that you get relief as soon as possible. Please take care and look forward to hearing from you again--
Hi Darren, yea the weather here isn’t very nice, it’s raining but it’s still very warm. I had surgery to take my AVM out and it also saved my life, and my unborn babies. I had a bleed and I had to wait for the swelling to go down it took 10days, then a 14hour surgery. I spent a month in hospital and then after that 3months in rehab, after that I had my baby boy. I haven’t been told to do things by a physio or anyone but i just do things myself to try and build strength. I just want to k ow if my head feeling dizzy 24/7 will go away over time. My eye still isn’t 100%, but is like to feel normal one day, well the “new normal” I watched a show the other day and this soldier lost his legs and he said his had to learn the “new normal” and that’s what we have to do. I find this site great to vent and find out other people’s experiences.
I found an old blog you might find interesting…http://www.avmsurvivors.org/profiles/blogs/migraine-1
Hello Zoe, reading your story, to through everything then give birth to your little baby boy, you sound like a true fighter, you go girl! I''ve just had physio today and have new exercises to do to strengthen my right hip before my botox injection in my right calf muscle on the 13th March. When I walk I'm using the side of my foot not the heel so the injection will hopefully help release my muscle and help me walk alittle better. I''ve been watching a programme over here called the " brain doctors" and people talk about being a new person afterwards, I can relate to that. I talked about being a new person in my neuropsychology sessions saying the old Darren is now gone "but some of my characteries are still there," just learning to live with the new ones is the key. It's really cold here today in England I live in the South West, it must be nice living in Australia having the sun all the time. Haha. Yes I agree this site is really goog because you can speak to people who understand what you are going through, everyday can be different. Again, thank you for your reply Zoe speak soon.
Hi Andrea, I''ve been reading your reply and yes I do notcie when the weather changes my headaches change. I'm seeing my doctor next week I will ask him about topamax. Your are right headaches do get you down especially if you have them all the time. Because of what happen to me I'm left with disabilities and the physiotherapists are injecting with botox in my right calf muscle to help me walk alittle better that is on the 13th March. I take Keppra for my epilepsy 750mg twice a day at 9am then again at 9pm, but I wish there was a drug I could take once a day and sort out all the headaches and pain , wishful thinking hey!. Magenisum supplements is another thing I haven't heard about I''ll ask about that too. Thank you for your reply Andrea it's been helpful keep on smiling we''ve come to far to give in, this site is really helping I'm so glad I came across it. My AVM surgery was in 2011 learning to live with the new me it's hard BUT I''ll never give in. Anyway how are you feeling today ? I need to used to the time difference it's 1:30 in the afternoon over here in England, speak soon :).
Hello Raveon, I know how you feel I to have mood swings, my personality can change, I'm still off work and have lots of physio. I see a neuropsychologist which helps sometimes you need to talk to other people rather than family members I find it helps. The people on this site are really nice and helpful because they know what your going through and understand everyday can be different. I'm sure we will find the end of the tunnel we just need to keep on fighting, I will gladly speak to you again we need to keep on smiling :).
Well yesterday (friday february 22nd) I was in bed ALL day with a horrible headache it really sucked as usually. The worst part was my husband was changed to 2nd shift at work which is 2pm to 10:30 pm and doesnt get home till 11pm. There for I couldnt get the pain meds because it was just me and my son home and I wont use the medicine unless another adult is in the house. So he just lays with me while I sleep and cry in pain :(. It was another cold and snowy day so that could have been why who knows, theres just no answers. Wish there was 1 magic pill that would be amazing!!! Hope you get some answers when you go to the dr. I also take keppra 500mg twice a day plus. So Im on a few seziure meds to do different things haha life is grand :) I have been pretty lucky with my avm no major things to speak of but Im def not the old me and I miss that but this is my new life and Im just happy to be here and to be alive! Hopefully we both get some headache relief SOON =)
Hello Andrea how are you feeling,? I haven't been online for a while had physio and doctors etc. Sorry to hear you were in bed all day on the 22nd February I know how you feel when you have a really bad headache you feel like doing nothing. My doctor has given me Paramax to try for my headaches I pick them up today. How do you find the Keppra does your mood change ? Yes I wish there was a magic pill to take away the pain, but us AVM' ers are a strong bunch together as group we stand, share our stories and help another we shall. ! Stay strong (I know it's hard) but we have family and friends to help us aswel. It's sunny here in England but cold, speak soon ;)
Hi Darren, I have had headaches since my surgery in 2000 I never had them prior. I also have vision issues (flashing in the eyes that don't stop)and small tremors. They have me on Topamax and clonazepam, prior to that they have had me on Keppra but since that didn't work they switched it up. Like you I am unable to have MRI's and always have CT's, however, CT's were unable to tell them anything about my headaches they were only able to find the real cause of my headaches after doing an EEG and realizing the area the surgery was perfomed in still to this day has not calmed down. So after they have completed your CT if they find nothing suggest that they do and EEG.
A natural remedy that I like to use for my headaches is peppermint oil. You can find peppermint oil at GNC or any natural whole food store. Put a few drops of the oil on your finger and gently rub it into your temples. You can even rub it across back and forth on your forehead. Lay down, close your eyes for about 5 to 10 minutes. This little remedy always makes me feel better. You can store the peppermint oil in the refrigerator. Hope this helps!
i do butterbur and magnesium, and it really helped. Really good studies that B2, magnesium, butterbur, and Q10 help reduce migraines, so you may want to try one or all out.
yoga and meditation of course work to manage stress. my first suggestion is to keep a diary to help you track your triggers for a few weeks. For example, sleep is a huge trigger for me, i had weekend migraines from 'sleeping in', so i had to stop that life-long habit, and i really reduced the weekend morning migraines.
for me, keppra really reduces your B vitmains, so lots of veggies and/or a good B complex is a good start. my neuro said it 'makes sense', but i just crave veggies, and make a veggie smoothy with berries or apples to keep it flavorful. if you do it and you feel better afterwards, you'll know it works for you.
keep the positive, your body thrives on it!
i highly recommend vitamins over meds, you get similar study results but without side effects. at this point, well studied too. here's the specifics from doctor oz, same amounts my neuro recommended. http://www.sharecare.com/question/prevent-headaches
Hi Sharyn,
To my understanding, magnesium poses risks of bleeding. :( So would encourage you check w/ your neuro if it's ok for you. http://www.sharecare.com/question/what-herbs-supplements-interact-magnesium.
Hello, thank you for your reply I have an appointment with my epilepsy consultant on the 8th April so I mention about EEG. Does the Topamax and Clonazepam work for you ? I know everyone is different and medication reacts differently to each individual depending on their circumstances. I have concentration and focus problems which is a side effect from the surgery do you suffer from any of these symptoms?. Again thanks for your reply marine brat .
Hi Sharyn, thanks for the useful information I didn't realise Keppra reduced your B vitamins in your body. I'm new to Keppra only been on it for 7 months now but my consultants are keeping on eye on me. I have an appointment at the hospital on the 8th April so I will mention about the vitamin top up. I keep a diary everyday and have done since my AVM bleed in May 2011, because of my AVM bleed I'm now a right sided hemiplegic. Keeping positive is the key especially when you have to learn how to walk again, also read and write. It's hard I won't lie' but having a Positive Mental Attitude is so important, like you say "your body thrives on it". My physiotherapists and consultants are amazing people plus your own determination helps in so many ways, not forgetting your own family being there when things are hard. I'm going shopping with my wife this week so I will stock up on fruit and veg, I will let you know how I get on :).
Hi Darren, Topamax has helped the best for me so far. The Clonazepam is more for the tremors so I don't take it on a regular basis, but I find that I'm able to relax more when I take it therefore the headache and vision gets better when I do take it. And yes my concentration and focus is not what it use to be. Some people say the concentration and focus will return to normal so hopefully once you get your headaches under control yours will also, the headaches could be a big contributing factor. I hope this helped. My prayers are with you.
Hi marine brat that's interesting about the clonazepam I suffer anxiety attacks so the consultant gave me clobazam to try to see if they help. The clobazam work but I need to take them before bed for two nights afterwards before I stop using them. Like I say I have an appointment on the 8th April so will mention about clonazepam to my Neuro consultant, thank you for your prayers maybe we can become friends and share our stories :)