Acromegaly and headaches: how do you cope?

@StacieMx Hello StacieMx, thank you for opening this discussion. I'm sorry to hear you're having so much pain, let me tag some members who can share their experience and advice with you.

Hello everyone, how are you today?  Do you or have you had headaches due to your acromegaly? What have you done to treat them? Feel free to share any advice or experiences you may have, we're all here to help one another!
@Ange7219‍ @sarahy‍ @Singlemumof5‍ @epain10‍ @Rosaleen1‍ @Waddington‍ @Bigjohn34‍ @Cora35‍ @sisi21‍ @ReprievedSoul‍ @Taylor16‍ @Mrskg74‍ @Mummyb‍ @jonjon‍ @Peterell‍ @Tracytjp‍ @Dottie1‍ @jecky710‍ @SteveA‍ 

Take care,
Courtney

@StacieMx Oh yes, the headaches are awful. My doctor gave me topiramate for them and it took a few weeks to take effect but after it really helped. Hope it gets better for you!

Hi

I'm on here really because my mum has had this for nearly 40 years. She complains about headaches but this has only been a more recent thing and wondered whether anyone with headaches are post or pre op. Thank you for your help. 

Hi

I'm on here really because my mum has had this for nearly 40 years. She complains about headaches but this has only been a more recent thing and wondered whether anyone with headaches are post or pre op. Thank you for your help. 

@ClareL I'm still pre-op, but I'd also love to hear from anyone about their experiences post-op. I'm hoping that with surgery these will go away.

I had my tumor surgery in December 2019, new years eve ironically!

I still get the head aches but they are much less often - i used to have them daily, i used to vomit the pain was so acute and I couldnt sleep for the pain. 

But now I get a few a month often when I am overtired but most days I am pain free. The pressure feeling is gone completely,  now its more of a bruise ache often kept at bay with paracetamol. 

Try and stay positive,  the surgery and recovery is all worth it to finally feel human and energetic again 

Claire xx

@clairethecatlady Thank you for replying! You give me hope. I'm waiting to see my specialist so I can get slated for surgery! xx

Thats great, i really hope you get your surgery soon. If you need anything please feel happy to ask, if I can help i will xx

@StacieMx‍ @Cora35‍ hello! I had surgery about 6 weeks ago. I used to suffer with quite severe chronic headache (usually worst in the morning and slowly improve through the day). Since my surgery, these have drastically improved and actually I have now probably had a headache free week for the first time in a long time! 

Happy to answer any specific post-op questions. Fire away!

Hi. Yes I also had a 3cm piturity tumour causing acromegaly. When diagnosed I was having severe head pain. When I bent my head down. Couldn’t get out of bed in the mornings with the pain. Ended up with my boss allowing me to wait each morning till the pain eased before going into work each day. After surgery the severe pains went away. Was replaced with daily headaches but nothing like the pains before removal. I hope your journey going forward will reduce your headaches also. I’m now back to having the head pains again and am on monthly injections to try to stop tumour realeasing growth hormones as they can’t safely take all the tumour away.