I hope everyone is doing as well as can be. Please accept my apologies as I think I may have posted something about seizures years back. I have an AVM in the right temporal lobe that ruptured in 2013 and in the last years or so, after the birth of my children, we found that I get microbleeds.
I had 2 neurosurgeons. Both very good and one who has a lot more experience. My primary neurosurgeon suggested embolization after the second angio, due to the microbleeds, and I finally gave in but Covid happened and took that as a sign to leave things as is. The other Neuro had advised against it as my symptom is only pain, irrespective of severity. However, he did mention that if I had seizures, then heād probably look at radiation. My primary Neuro passed away over a year ago and his wife refused to give me my medical file, later claiming it was lost perhaps and couldnāt be found. I reached out to the medical council here in South Africa but nothing came of it.
Recently Iāve noticed changes in myself. Some of it may be due to stress and other medical issues potentially (will know within the next month), but Iāve noticed there are times when I sometimes canāt recall things said/done from a short term memory perspective. Iām tired a lot as well and my insomnia is either out of control, or times where Iām oversleeping, basically, sleep patterns are completely off.
However, something struck me as odd recently and havenāt had a chance to get to the Neuro as heās not locally based, but will be making a trip soon hopefully. I havenāt had a seizure in the traditional sense of the word. I have noticed at times trembling in my hand or leg on my right hand side, which I chalked up to perhaps too many meds that day. Iāve also felt trembles inside my body. As if my body is the outer shell and still but the insides are āshakyā. This happened just once or twice at most. Iāve also noticed (not at the time but retrospectively) there have been times that I may have āzoned outā and then suddenly awake and realize whatās happening around me. Probably lasted less than a minute, but I did read somewhere that there are seizures that present itself in this way, where itās like youāre in a trance but donāt know it until āyou come toā.
I have the usual symptoms (pain is constant), such as hearing blood flow throughout my body, tinnitus, beating/throbbing feeling in my ear (either side, but predominantly on the right side).
If anyoneās experienced anything like this, Iād love to hear your experiences.
Thank you for reading this if you made it to the end of this long post.
I hear you! I canāt say I have any symptoms these days, as I had an operation in 2017 to close off my AVM with an embolization procedure.
How long is it since you had a scan of your AVM? Iām thinking it would be good to start with the new neuro that you have in mind and if it has been a long time since any scans were done, it probably is best to just have new scans done. These things do change a bit over time, so knowing what is the case rather than what was the case is probably most important.
I donāt have any first hand experience of seizures or even of much in the way of migraine but from reading a book called Migraine some time ago, the symptoms you describe do sound like they are in those kind of areas: they might be migraine-like or they may be more seizure-like or a bit of a mix, so getting checked out seems like a good plan.
Hello, Suraya! Some of those symptoms sound a lot like my auras (zoning out, memory issues, and sudden fatigue). I have intense focal seizures, but Iāve recently learned that migraine seizures can show similar symptoms. Hope you find some answers soon!
I have had similar symptoms of āzoning outā, memory issues etc over the years and have had multi checks with EEGās and so on but nothing conclusive has came backā¦ during those times I was concerned I realised I had been super stressed and had lack of sleep with newborns.
I put it down to this, as lack of sleep and stress affects everybody, so imagine what it does to us who have had any brain trauma.
If concerned I would ask for checks from your Neuro to help but would also try my hardest to minimise stress and get better sleepā¦ God bless!
Sounds a bit similar to me at the moment. I didnāt think much of it - but, yes - I feel a tad too forgetful at times, along with zoning out. I also have been getting what Iād call trembling in my hands, it comes & goes.
Out of nowhere Iāll feel something similar to if I havenāt eaten all day. But, I make sure to eat all day & drink plenty of fluids.
Iām used to dealing with all of this now, but it just slows me down & just sets me back.
Thank you for replying, guidance and info below. My last cerebral angio was in 2019, and whilst the AVM hadnāt grown, there are some new feeding vessels and supposedly venous hypertension (think we spoke about this previously, and itās apparently the pressure in the vessels that are high).
Iāve scheduled a MRI in about a monthās time and the Neuro will get the results and take it from there. What weād learned was this was what was causing microbleeds.
The information you provided regarding migraines is really helpful. Iāve been having migraines and tension headaches for over a couple decades now, sometimes with aura (in my case itās āseeing starsā) and what youāve said below is something I definitely need to ask my doc about. On a lighter note, over 2 decades of MRIs & CTs for migraines, the AVM never showed up until 12 years ago!
Thank you Richard. Youāve given me some very insightful info to pursue with my doc.
Sounds like we have exactly the same symptoms! Honestly, I do skip meals here and there as life takes over, but not too often as I end up with migraines.
I understand how you must feel with respect to feeling or rather, literally being slowed down. Iāve noticed my energy levels are not the same. Previously, I could take my meds, manage my pain and continue with my day, but the fatigue has become a lot more evident. Doc chalks it up to to chronic pain, but still difficult to accept when you feel like everything is changing in spite of living with this and being ok with it.
@DickD replied with some insightful info regarding migraines (which I have for over a couple decades now) and itās something I will bring up at my next scan and check up.
Holding thumbs that nothing changes for you with regards to having seizures. If you donāt mind me asking, is your AVM located in a part of the brain thatās responsible for long or short term memory? Mine is right temporal lobe, which is responsible for short term memory but my doc said it was in a non eloquent area. Hereās the kicker though, what I tend to forget, sometimes comes back at the most unexpected times. Iām hoping itās just stress (please donāt take this the wrong way, but perhaps it may be for you too which to me is better than having this progress). Iām not sure if you get migraines, but @DickD insight was very helpful to me.
Thank you for sharing your experience as well. Youāre spot on about stress, lack of sleep, etc. and Iām hoping itās just that (Iām a chronic insomniac). The last couple months I found I sleep every second day
I have an MRI scheduled and will speak to my doc, but thank you for telling me about the EEG. I think I need to bring it up when I have my next consult and take it from there.
Thank you for reaching out and sharing your symptoms. As youāll see in my replies, Iāve been getting migraines and tension headaches for over 2 decades. Migraines with aura sometimes, but my aura was āseeing starsā or peripheral to partial loss of sight for a few minutes at most.
I would be surprised at this point if the way the migraine with aura has changed for me (everything has changed when it comes down to the AVM so far). Everyone whoās replied have given me a lot to ask my doc at my next scan and visit, and Iām adding this to my list of questions.
The only way I wonāt get an answer is if the docs donāt have one
Iām someone who wants answers even if I donāt like what I hear, because Iād rather know and face it head on than bury my head in the sand (this can be read as the control freak I am )
Forgive my blathering, but I add to my stress as Iām always thinking of kids who are young, and have started to try to understand what I have and why Iām sometimes not functional, and theyāre handling it well as I did not want to lie to them nor scare them. And theyāre very much like meā¦ when you have the info, itās easier to accept.
Just a little comment on this. I think depending on how deeply you skip meals, I think any normal person can end up with a headache. Omitting hydration is probably the quickest route to a headache for anyone!
However, I am convinced my wife is borderline diabetic: in years gone by, we would go out shopping on a Saturday and focus too much on going to the places we wanted to visit than on eating or drinking, having probably got up a little later on a Saturday as well, and what we found was that if we didnāt keep her suitably fed and watered, she would go into migraine pretty regularly. So, for the past few decades we have made sure to eat and drink while we are out and about and she almost never has a migraine these days / in the last 20 years.
Migraine is more common in women and also more common from puberty on. I donāt want to say we are both post menopausal these days but we are also both post menopausal (from an age point of view!) so that may be a factor these days for us. My wife doesnāt have an AVM: itās me with the AVM.
Which would somewhat explain why I have terrible facial recognition. I canāt remember peopleās faces I have seen just a few hours ago. Unless they have something really unique, like tattoos or something. Or, I see them multiple times.
@Suraya no problem at all & hope it all works outā¦ definitely look at options on how to improve your sleep and get at least 7hrs a nightā¦ God bless!
