Hello. I can’t believe it took me 3 years to search for a support group, when some of you find this place immediately after discovering your AVM! I’m appreciating your stories.
I’d like to introduce myself. In March 2022, I unexpectedly suffered a stroke due to a ruptured AVM in my right cerebellum. I went to an excellent neurosurgery center, where the AVM was resected during a craniotomy. I’m now considered “cured.”
Since then, I’ve been really grateful for how much my baseline fitness and relative youth have helped my recovery. I will say that I recently have realized that the “full recovery” I was promised is not the “full recovery” I was expecting. I know this is a factor in my struggle with how to define my health. And the times when my symptoms are worse, I feel like I’m regressing, and like I’ve wasted the various therapies I’ve had. But overall, I continue to improve, little by little.
I have recently found acupuncture to be a huge help with my fatigue. I finished my first course of acupuncture a little over a month ago, and I hope the benefits will last another month or two!
I have a couple questions, though maybe they have already been answered somewhere.
Do any other women feel their symptoms worsen in the premenstrual part of their cycle?
Is it common for AVM survivors to get headaches after light/moderate exercise?
Hello!
I also had a rupture two years ago from an AVM in my right cerebellum.
I’m finding your questions very interesting as I had the same ones too!
Every month 2-3 days before my period I get some kind of headaches that the pain starts from my back,through my neck and reflects the pain at the lower back of my head,I only noticed them after my rupture.
As for the exercise,I only do walking as I’m in my radiation treatment period and have to be careful, but same pain as I described before happens when I’m very tired or worked a lot etc…
Welcome to the family… I can only comment on headaches and exercise as a male and will say if it is intense it may cause it but over time you’ll improve… God bless!
Hello, @bettybo! Thank you for your reply! It means a lot to see that someone else in almost the same situation has had some of the same questions. I have nerve pain at the base of my spine that has decreased from 10/10 at the onset to 1/10, and oftentimes 0/10. But in the days before my period, it usually flares up. My general pain gets worse during this time, but the “butt pain” is what I find most noticeable.
As far as exercising, I have probably been overly cautious, but a light workout on the elliptical machine gave me a headache a few months after my surgery, so I stopped working out at all until a few weeks ago. I walked on my treadmill for 1 hour 10 minutes, and I had a pretty bad headache for about a week afterwards! Last Monday I tried again, but for 10 minutes. I did have a headache the next day, but I’m pretty sure it was for other reasons. But this is why I’m curious about other people’s experiences!
It makes sense that your pain worsens when you are really tired. All my symptoms get worse when I’m too tired: pains, balance issues, right hand/arm weakness, vision problems.
I didn’t know radiation was a treatment option for AVMs before reading some of the messages here. I hope it is working well for you!
Hello @Adrian1! Thank you for your message. I have been a little too ambitious in my exercise attempts, and then I get rattled when they backfire on me. But I will take heart from your words and keep trying!
The thing I’ve picked up, partly from another Ben’s Friends brain injury forum, is Hydration, Hydration, Hydration! I believe that we are more tolerant to dehydration prior to a bleed – less tolerant post bleed – so maybe pay a little attention to good hydration pre-, inter- and post activity and see if that makes any difference.
I found activity to be definitely weirding shortly after my embolization (though I’ve never had a bleed but I feel that my “plumbing” got reworked extensively by my op). I remember playing badminton with my son very soon post op and it was definitely too much too soon. And I went back to the gym 5 months post op: it felt good but I was dizzy I can’t remember how many weeks afterwards and I feel that probably again I was jumping back in too quick. So some of it might depend on how quick you’re jumping back into life but see if good hydration makes a difference.
After bothering myself with restarting too quickly, I took it much more steadily.
Thank you,I hope it works too!Here in Greece they prefer radiation over craniotomy so there’s less risk,but there’s more risk of rupture during the ‘healing’ time…
The good about my headaches is that with paracetamol they pass,so I’m pain free with painkillers.Does it work with yours too?
Hi @DickD ! Thank you for sharing your own experience and what you’ve learned from others. Now that I think of it, I am more prone to headaches when dehydrated than I was before the bleed.
Truly, everything is affected.
I will pay more attention to hydration during exercise. And I hope a slow buildup will work for me, as it has in other areas of life.
It’s so interesting to learn why different approaches are used in different countries. I had an embolization first, to make the resection safer. Maybe this combination is preferred in the US, when possible. I don’t know. But it seems like any treatment or non-treatment comes with challenges.
That’s great that paracetamol gets rid of your headaches! I’m on a low dose of topiramate to help prevent migraines, which helps some. Acupuncture has helped some. And acetaminophen (same as paracetamol, right?) helps some. Using all 3 regularly has gotten me close to being headache-free, but I’m on a break from acupuncture until I can afford it again.
@Kacey Welcome to the group. I had a stroke before I got my avm. My stroke was rare blood clot stroke that put me in a come. Prior to that I got migraines and post they got worse, The Drs always thought they were due my periods. Post stroke I was put on compounding progesterone which stopped my periods which were constant due to the blood thinners. I still take it even though I went through early menopause because it also helps with me endometriosis pain. After my stroke my Stroke dr who heads the stroke dept at Stanford sent me to the pain dept at Stanford where I see the head of that dept.Its pretty common to get more pain before our period. I just read a article that magnesium can help with head pain but it can take a month to help
Here are some foods managing chronic pain, including:
Pumpkin seeds
Leafy greens
Avocados
Cashews
Dark chocolate
Bananas
Not all magnesium is the same either Magnesium glycinate is gentle and I get mine from Seeking health which is made in the USA
Angela
Hello @Angela4 ! Thank you for your reply. That information about the potential benefits of magnesium on improving headaches is so interesting. I’m going to consume more of those foods and see how it helps!
Also, thank you for sharing your experience of headaches in relation to periods and hormones. You’ve given me more food for thought that I hope will help lead to a better understanding of myself.
I so appreciate everyone who’s commented here. I hope I can add some value to this nice group.
I have nerve pain at the base of my spine that has decreased from 10/10 at the onset to 1/10, and oftentimes 0/10. But in the days before my period, it usually flares up. My general pain gets worse during this time, but the “butt pain” is what I find most noticeable.
But I will take heart from your words and keep trying! 