Is it normal to have massive headaches for most mornings and to have them resolve by about noon after an embolization? This is how I feel every day, and my second embo was almost 3 weeks ago. I need another one in a few weeks. Should I expect the pain to be just as bad and last just as long? Should I expect this headache pain to be chronic?
No, I don’t think it’s normal / to be expected. The fact that you say you’re still due a further embolization suggests to me that your headaches might be related to whatever is still to do.
I do know that some people have chronic headaches after an operation but at this stage, I’d be positive.
Hoping the best,
I had them ️ And it turned out that thanks to the embolization I formed two small aneurysms because the blood that used to feed the avm went that way and since that vein wall was weak well yup small aneurysms so in the meantime they are getting monitored every time I go for my angiogram. If they grow even just a little bit, they will embolize them too. So that could be the case, but I hope not. But prior to the angiogram, my neurosurgeon reassured me that it’s normal to still get headaches back then so just call your doctors and ask them. They will either reassure you or ask you to come in.
A couple of things my doctor told me. He said that when you do embolizations, especially that impact the brain and blood flow in the brain, it takes a while - quite often up to 6 to 9 months for the blood to “learn” a new route. So he said to expect the headaches to continue but gradually lessen over time. He also said that it is not uncommon for what is essentially a controlled traumatic brain injury to cause what he called atypical complex migraines. He’s working on getting me in to a neurologist (he’s a neurosurgeon) to analyze things that way and see if the headaches can be lessened that way. Unfortunately, it’s 3 months until I can get in to see one.
I was advised to keep a headache journal - write down when and what you’re doing, eating and things like that - which might help you understand what cause them. I’ve done that so far and I’ve learned that noise, the grocery store, being active, too much time in the car, being warm - all have an impact.
You mentioned that you have them in the morning - have you tried to sleep with your head elevated? It has just now been 3 nights in a row that I’ve been able to sleep laying down. Prior to that, a night here and there but most of the time I had to be in the recliner with my head elevated.
Hope this helps. Keep in touch,
I agree with Tom, the idea of elevating your head – sleeping with several pillows – might take away the morning headaches. I had to sleep in that way until my embolization.
I’m hoping when you’ve had your second embo, it might not need the elevation.
Good to hear you’re having another go at sleeping flat!
This is from a migraine prespective as I’ve had nuerologically complicated migraines for 30 years… try a NSAID to help with the headache/migraine. Because you’ve had a controlled traumatic brain injury and vessel and whatnot are rerouting I would said odds are extremely high that you have swelling going on in there. Swelling = Headache. So, rather than pain meds, try anti-inflammatory and see how that goes.
Absolutely keep a headache journal! It will help you avoid current triggers like bright or flashing lights. I assume you won’t need the journal after about a year as you finish healing, but every little bit will help right now.
Also, if warmth bothers you and makes the migraine worse try ice on the back of your neck to ease the pain. Keep your house cool, especially at night when you’re trying to sleep. Avoid getting too hot when you sleep!
One of the biggest tricks to headaches is to hit them hard and fast when they start. Don’t wait to see how bad it’s going to get and if you “need” medication. As soon as you even think you’re getting a headache take action. I think this is particularly important in this case because I do believe these types of headaches are from swelling – you want to get that swelling under control and keep it under control. Not only will you heal faster overall, but you’ll feel better, too.
Feel free to PM me with migraine/headache questions.
Thanks - I’m on 5 nights out of the last 4 months - but I’ll take it.
The other thing - as I’m feeling it today - is that too much activity one day makes me more miserable the next day. Yesterday I was busy with things around the house - spraying to keep the outdoor spiders outdoors, fixing the broken AC (heat index is currently 98degrees F) and I couldn’t get to sleep until about 1:00 this morning and my head has been achy going on painful all day today and kind of spacey too. I’m finding with activity - whether it be physical or noise or visual - even if I make it through that day, I’ll pay for it the next day.
A - interesting about NSAIDs - I had been on heavy doses of ibuprofen (800 mg 4 times a day) and switched to naproxen - but I’ve had more than one doctor/NP tell me that NSAIDS can actually cause rebound headaches if you get on a cycle. Get a headache, take pain meds, makes it better, but when it wears off, another one comes sooner. I’m hoping the neurologist can help with that. More when I know more.
I’ve been told NSAIDs are contraindicated in my case due to bleeding risk. I’m curious as to why your providers have not provided the same advice.
Also, a neurologist has been involved in my care plan from the beginning of my DAVF diagnosis. Is that not the norm where you are from? Just curious about the differences in treatment teams in different areas. I’ve also had consults with neurosurgeons and radiation oncologists. Not sure if this is the norm but I am definitely appreciating my team after reading the experiences of others. God Bless,
Hmmm… I don’t know. Here, the neurosurgeons are the ones who deal with AVMs and strokes and such. I kind of get the impression that the AVM expert is saying, “I don’t know what’s up with the headaches, let’s get a headache guy in…”
Azurelle talked about NSAIDs in an earlier post, which I hid for a while as I clarified the advice in her post. The conclusion of the chat we had offline was that NSAIDs are often a no no for AVM patients, especially if you’re still at risk of a bleed as a bleed with thinned blood would do more damage / take longer to clot, so you definitely need to take doctor’s advice on whether NSAIDs are appropriate for you.
I’ve unhidden the earlier post.
In the conversation that Tom & I had offline, Tom indicated that the risk of the NSAID messing something up for him was lower risk than all the other things he’s got going on, so to give it a go.
But you really need tailored advice on NSAIDs for you before you try.
Hope this helps,
Hello everyone! We have a new member, Katielee (@Katielee) who is concerned about headaches, and who might be interested in this thread.
You can click on @Katielee to see her profile and learn a bit about her!
Seenie from ModSupport
@TJ127 one anti inflammatory that works for me is Celebrex I am now on 200 mg 2x a day but I usually forget my am dose. I also take a muscle relaxer at night either Flexirl or Tizanidine.