Quantcast

AVM Survivors Network

Headaches and Head Pain Every Day


#1

Hello all.

I am still in recovery stage after cyber knife radiation. Almost every day though I have head pain or a head ache. I’m not allowed to take Advil or ibuprofen because they are blood thinners. For the most part I’ve been taking Tylenol every day to help take the edge off but I know the long term effects could really hurt my liver. What do you guys take for the headaches everyday that are safe? Thank you!

Alyssa


#2

Hi Alyssa, I too have daily headaches and my doctors referred me to a headache specialist, When I described the headaches they suggested that these headaches were more like migraines, So I was prescribed propranolol which is a beta blocker type of medicine and regulates heart rate and blood pressure, These have worked in making things better, But obviously I follow my doctors advice on these matters, Thankfully I have no side affects from any of my current medication and still need to take 2 cocodamol(UK Codine based pain killers 30/500) as my headaches seem to be worse first thing in the morning and especially if I haven’t slept well, I would recommend that you drink more water each day (I’m at a gallon a day now) and go to bed early as much as possible sleep is key, I hope this helps a little. Take care.

Martin


#3

I keep a couple of gel ice packs in my freezer and the cold helps. That’s only good if you can take the time to lay down though. I also put one on top of my head when I go to sleep at night. Ebay is a lot cheaper than the drugstore also.


#4

Jason totally agree, I find Ice and cold better than heat, People tend to go one way or another. Good advice and thanks :slight_smile: .


#5

Hi! Not too long after my GK I was on all sorts of different prescriptions for headaches and one to try and prevent migraines. I had been on so much stuff that I was really getting ill. My hair was falling out, whenever I’d eat I’d be running to the bathroom. In just a few months I had lost over 60lbs. My general at the time decided I was over medicated and took me off of everything. My pain doctor had prescribed me Fioricet but would only give me so many a month. After that really wasn’t working, they prescribe me now 10/325 Hydrocodone. It helps immensely as does Xanax. My headaches are also worse in the mornings, but can also last 24/7. Most weeks I’m lucky to have one good day. I also find that an ice pack feels really good against the back of my head.
Best wishes to you. I hope that you can find something that will work for you and make this more tolerable. It’s definitely not easy, but try and stay positive!! :blush::pray:t2:


#6

Hi Alyssa:

For headaches, I was taking 2 extra strength Tylenol every 4 hours. My doctor thought that was too much. For the past 10 years or so, I had been taking one 25 mg. of Elavil (Amitripyline) as a migrane preventative. Since Elavil has worked so well for me my Neurologist told me to cut down to 1 Extra Strength Tylenol, every 4 hours when needed, and she increased my Elavil intake from 25 mg. to 35.mg daily. (Elavil does not come in 35 mg., so I take one 25 mg and one 10 mg, for a total of 35 mg. every night before bed). This combination has worked very well for me. If my pain is really intense during the day, I will take 2 Tylenols. Elavil also has a sedative quality in it and makes for a better nights sleep. Talk to your doctor’s as there are many alternatives to fighting the pain. After my Gamma Knife Radiation procedure, I also had bad headaches for 3 days and finally things seemed to settle down. I pray that you are pain-free soon. Best of luck.


#7

I have tried numerous preventative medications as well as treatment medications. Advil, Tylenol, Tylenol #3, Frova, and Relpax no longer work for me, and I am currently taking hydromorphone 2mg two to four times daily as needed. Hydromorphone, coffee/ espresso, and ice packs on my head, and hot showers are the only things that I have found that work for me to take the severe migraine pain away. All of these are temporary relief, but when I need to be a functioning human being I do what I have to do to accomplish things like cleaning, cooking, and even going out to visit with friends or family. I have also tried Amitriptyline for migraine prevention, but after 2 years it seemed to stop working for me. I am taking propranolol now (10mg twice daily), and hoping it will give some relief as well. Hopefully you will find the right treatment method for you. Take care.


#8

Thank you!


#9

Thank you for the info! Hopefully I can find something


#10

I have a cranial cavernous malformation (low pressure AVM 2.3cm x 1.2cm. I had a bleed about 8.5 yrs ago with light stroke. I’ve had headaches all my life, and after 1998 every minute of everyday. There is 100% risk of complication for surgery. I had my first seizure about 2 years ago. At around 6 yrs after the bleed the pain was worse than ever and I couldn’t function because the pain was so bad. Ive been on morphine daily for about 4 years. Im also on Pregabalin for Glossopharyngeal Neauralgia, and immiprimine. Doses are on the high side. Every specialist I see says they don’t know how I do it. I almost went on full disability about 2.5 yrs ago, but I’ve been hanging on, and am definitely in a better place than I was 2.5 yrs ago. I modified my work days to work 7 hrs, not take a lunch, and go home at 3:30, working 7 hrs a day. I take meds when I wake (I wake with a headache), and then take none while I’m at work. As soon as I get home I take doses 2 & 3 immediately, and try to hold off on the last one for as long as I can. This allows me to function at work and drive. I DO NOT RECOMMEND THIS TO ANYONE!!! By the time Im taking meds right after work, the morning meds are wearing off very quickly, the Pain starts to increase dramatically, and I start getting dope sick, while I wait for the afternoon dose to kick in. Most often, I don’t start feeling relief and a little better by 8 PM or 8:30. This is a daily re-run of a horrible horrible nightmare. The pain never goes 100% away. The docs have told me they can’t make the pain go away completely, only make me feel more comfortable. It does seem its catching up with me and I seem to be sliding down the hill very slowly as pain levels increase, and I get more weerry from daily, continual, very strong drug therapy, strong headache pain, and strong left side nerve pain.

The support from Ben’s sites is the greatest contributer to me being able to keep moving forward. Truly a blessing.

Perhaps my greatest fear is that I’ll have an accident while driving and someone will get hurt. I absolutely do not go out after dark. Ever!

Best wishes to all!!


#11

Ed,

Hi. It sounds like you’re achieving amazing things but really pushing yourself. I know nothing about your meds… would they be unsuitable to try to take at work, to stop you having to last the full 7 hours? That sounds unreasonably tough?

What level of support are you entitled to in Canada to have time out of your working day for meds or otherwise create a sustainable way of working? In the UK, employers are required to allow reasonable adjustments to work patterns, specific equipment or other needs to help people who are classed as having a disability partake as fully as possible in work. (In the UK “disability” can include conditions such as insulin-dependent diabetes, so a bit similar to your need to take time out for meds.)

Cheers

Richard


#12

Oh my it does sound like you’re pushing yourself. Have you seeked any second opinions?


#13

Hi Alyssa .I too have similar problem like yours in temporal lobe and done cyberknife this June and going through severe headache and depression .and have you found the way to deal with it.?


#14

Hi there,

I have yet to find a great cure to the head pain other than steroids and sometimes Tylenol. Icing can temporarily help. Taking a nap will occasionally work for me too since your brain is trying to heal


#15

Do u still have headache.how often is it.?


#16

I still do and they have been getting worse recently actually since I have gotten off the steroids. The headaches are still due to brain swelling from cyber knife radiation. I have them almost every day all day unfortunately =( They do seem to let up though when I do the things I had listed above. My doctor told me if I become symptomatic to take one steroid and that’s it and see if it helps


#17

Same is case with mine About steroids and constant headache for day and night.I am thinking that I am the only person and thanks for response mam…have you got seizure yet.which medication are you on these days.?


#18

I have been on seizure medication ever since they found my AVM. I am on Keppra 1 pill in the morning and 2 pills at night