Much better day today. No storm and slept beautifully last night.
Im so glad your feeling better today sounds like your doctor is confident the embolism was a success, still takes time to recover and adjust. It must bring on mixed feelings after such a long build up until reaching the point of having your embolisation done I can imagine. I hope you continue to feel better and better each day
HELP PLEASE!! Really been struggling lately with severe, on going persistent head pain, what are some of my avmer’s doing or using to help with this issue?? I know I’m not the only one, any feed back would be helpful, thanks for reading,
Try to see a specialist ASAP to scan your head/ check on you if you are able, to get peace of mind and make sure everything is okay. Then to look over medication options, hopefully others on the group will give some ideas of ones to bring up when you see your specialist for discussion.
As for me: I am on topiramate 50mg, been 2 weeks so far or more, no migraines so far. I mean I still get pressure head and neck pains, but thats nothing to a migraine (had them before this meds too). Could be an option?
Not had any funny symptoms other than not the same appetite (though still enjoy food and flavour). Good for my waist line so im not complaining.
Best regards and wishes,
Please let us know how you get on - I know I am long due a proper update post!
Hello @corrine and all of us who suffer from Migraines as well -
For me mine got worse after my 1st stroke and after my 1st embolism.
I now get 30 shots in my head of botox every 3 months.
Its in the forehead eyebrows, all around the skull and occipital lobes also the area for me like if I was wearing a head band and in the jaw area.
It takes about 2 weeks to kick in and wears off about 2 weeks short of when the FDA approves you to get -but per my Stanford Pain Neuro she says studies are going on to see if they can give it sooner. Which is funny cause if I want for wrinkles no one seems to care.
Also after years of not trying medical marijuana I finally started 2 years ago. I do liquids and gummies and topicals. The topical oil really helps and liquid better than the zofran anti barf meds and I never feel high.
I also take the medical marijuana at night cause since the stroke I have sleep issues and they have gummies with Indica that make you sleep without feeling like a zoombie the next am. I also have CBD gummies for the day that help with pain all over my body and head that dont make me out of it. These are life savers.
Lately I have been having cyclic vomiting which I think is related to some other health issue I have called Ehlers Danlos and none of my anti barf meds were working and I get a tension headache with it. - Went to my dispensery and they suggested another liquid which has been helping - I do have an appt with my pain neuro and my stroke neuro and my heart doctor to see what the heck this new constant vomitting thing is.
Oh and even my medical marijuana doctor is a neuro - she said opiates dont work and thats why people get addicted. They just made me barf which my stanford neuros said I dont have opiate receptors.
Some hints my pain neuro said to help reduce our head aches are
- go to bed and get up at the same time - keep a schedule
- eat protein for breakfast lunch and dinner
- drink plenty of water throughout the day
- stay away from food triggers like mine are mushrooms cheese processed foods,red wine
I also take a celebrex every day , a slow release magnesium, coconut oil, and found some Nuun hydration tablets that have electrolytes that dissolve in water.
lastly there is a newer migraine med called Frova - I switch between that and Maxalt -
also if you can get a pain dr ir pain clinic they can do infusions when the migraines are really bad. but you cant take the migraine meds for 24 hrs or maybe its 48hrs prior to treatment so I have never gone but I plan to next time cause the last two weeks before I can get my botox shots I am mostly in bed with migraines so I plan to just go and try it to see if it helps. I am not sure what is in the infusion but I know it has some magnesium.
I have also tried trigger shots but they did not work at all and I felt like I was having a heart attack.
Eating sunflower seeds also seems to help me
Hey guys thanks for sharing your experiences. I have been dealing with my avm stuff for 18yrs. Ive had embolizations, radiation, brain surgery, and a stroke; Ive had something like 15-20 total bleeds (no exaggeration). Ive been through the pantheon of medications- i have taken every med mentioned here (i think) with little to no help. Most of them make me just stupid and unable to think correctly, and personally, id rather deal with the pain than some of the medication side effects. I am currently going thru my 3rd run of trying various medications and none are working and I am at my wits end yet again…
I am glad to read a couple posts referring to the use of medical marijuana. I have known for years that when I have used it that it helps me better than any Rx i have taken-and i have lost count. My problem is I live in Indiana, a very backwards state, and it is still very illegal here, even though just 30 miles west of me in Illinois and 100 miles north in Michigan or 150 miles east in Ohio it is legal! It baffles me. Its extremely upsetting to me based upon my geographic location I am unable to use something I know helps me exponentially better than any prescription I have ever used. Problem is it is illegal here! Over the last few months I have been strongly considering moving the 30 miles west so I can see if a daily, legal use of marijuana would finally get me the relief I have been seeking for 18yrs. sooo THANK YOU to those of you posting about your experiences with it. Upon reading them I have decided I need to move, and SOON, and hopefully with a daily -legal- medication I will finally be able to move on with life; I feel like for the past 5 yrs since my avm brain surgery removal I have been walking in quicksand.
Again THANKS to those of you posting about it. And to everyone here- Good Luck with each of your individual situations. We are all in this together! And as bad as it seems there is always light at the end of the tunnel- even if we are still to far away to see it. I love you all for we share something most people cannot even comprehend.
I am very sorry for the lack of reply, I could have sworn I did reply… but looks like I didnt.
I am currently on Topiramate (Topamax), and although I don’t like some of the side effects, I am migraine free at the moment. I do however still have pressure headaches and neck pains most days, but they are manageable for me. If this medication fails me (wouldn’t be suprised with my luck with medications), I will keep botox in mind as an alternative solution.
Oh medical marijuana- if only that were a thing here in the UK! They sound like a great alternative to sleeping pills and I’ve really been holding off asking of sleeping pills. Terrified of becoming reliant.
As for your neuros advice. I definently need to sort out my sleep schedule. Protein is another one I have been on and off on. I bought protein shake to make it easier which I havent touched - time to start. Everyone here seems to promote coconut oil for health, I need to finally get a tub!
Thankyou for all your advice Angela, I really do appreciate it all alot. the first of my embolisations is coming up January 26th so hopefully soon get some pressure relief
Hugs and Love,
@followsblindly So sorry its not legal
Have you tried CBD oil from Hemp? You can order it and its legal I am on a closed facebook group called CBD Oil Users Group and even though I have a medical Marijuana card can get CBD oil with THC I am thinking about trying some of the ones people in FB group are raving about.
Its sad that its not legal everywhere
To everyone who is stuck in this situation,
Please try Botox!!
I started getting Botox injections for my migraines in December of ‘17 and it’s the best thing that could’ve ever happened to me.
I used to suffer from daily, debilitating migraines, sometimes lasting for weeks, and felt like giving up. After several trial and error medications and neurologists, my primary physician recommended Botox.
Let me tell you, please consider it. If anyone has any questions please feel free to ask me!
You are not alone. Still trying to find away to stop my headaches