Hello! My name is Kallen, and I am a 25 year old woman. I had what I always thought were panic attacks. It wasn’t until bringing it up around a doctor (my OBGYN of all people), that i was informed it could possibly be focal seizures.
Usually, how an episode starts is I will get a tight feeling in my chest and begin to have a scary deja vue feeling. I will begin to sweat and sometimes I will shiver all over. Suddenly, nothing will feel real, and if someone talks to me it sounds like jibberish. I cannot read or write or listen to anything. It feels like my mind is just way too overwhelmed to understand any language. The attack lasts anywhere from 30 seconds to maybe 2.5 minutes. Not super long. Usually, i can hide in the corner for the bit, or my boyfriend will hug me until it’s over.
So, I went to my GP to bring up my concerns and got sent to 3 different specialists (cardiologist, endocrinologist, and neurologist).
I went to the neurologist. When explaining everything and my frustration, I was told… it’s probably a panic attack. But she said it was also likely it could be a focal seizure, so I got an EEG and MRI.
I got a call a few days later telling me my follow-up appointment had been bumped up. I was told I had an AVM in my left temporal lobe and was sent to a random neurosurgeon. I was in shock and scared and so unsure what to do. I saw said neurosurgeon with my mother and partner and left feeling confused and frustrated and neglected. I decided to get a second opinion at Emory University here in Atlanta and was set up with an amazing neurosurgeon (Dr. Howard). He told me he believed I had actually been misdiagnosed. So, I had an angiogram, which proved my AVM was actually a CCM! My neurologist and first neurosurgeon were wrong! I am now looking into LITT. I’ve been browsing the internet a lot, which brought me here. I hope to find others with similar experiences and some support through this scary time.
TLDR: Found out my panic attacks were actually seizures. Got an MRI and was misdiagnosed with an AVM (It is actually a CCM). I’m about to go through LITT and looking for some support through online communities.
Hi Kallen! Welcome to AVM survivors forum. Your story is so similar to my son’s Daniel. We always thought he suffered from panic attacks and never crossed our minds that he actually had an AVM until he had a full seizure during dinner. So so scary. So thankful that you didn’t get an actual full blown seizure and got help before it happening. You’re already on Keppra to prevent. You made me research your condition Cavernous Malformation CCM. You also made me research the treatment Laser Interstitial Thermal Therapy LITT as they are new to me. Early research tells me you are at less risk of hemorrhaging as your condition is slow blood flow than AVM with fast blood flow. Treatments are different as my son had Embolization, Failed Craniotomy and Gamma Knife radiation. He’s doing much better now and he is also your age at 24. I will continue researching your condition so I don’t say the wrong thing / misinformed thing. Just wanted you to know that are with you as we all know the feeling of early diagnosis. Yes we were all afraid in the beginning and so confused as to the process toward treatment but things do get better over time. We are about one year and a half from my son’s diagnosis and things are better now. We’ll be in touch with you as you move forward. Blessings! Huerta family
Can I just say that we have at least a handful of @BrainCCM members here, so you are not alone! While this place is called AVMsurvivors (and this is greatly our focus) in truth, we welcome people with a number of vascular anomalies and so CCM members and others are very much welcome!
Actually very nice to know that I was not the only one misdiagnosed with panic attacks at first! It makes me so happy to hear that Daniel is doing much better! Thank you for welcoming me into the community even though my condition is similar, but also very different.
Thank you so much for welcoming me into your community. There isn’t a lot pertaining to CCMs specifically out there besides one small subreddit, so it does mean a lot.
But there’s about 20 of you so far. Every time I find someone a bit unique like you, I like to get you to club together a bit because you deserve community.
Hey there! Welcome to the forum.
The symptoms you described so well definitely read like focal seizures, both aware and impaired unaware.
I’m very sorry to hear about your misdiagnoses, but very glad you found a great provider to address the real physiology of what’s happening and where.
I have resulting epilepsy with many focal seizures due to scarring of a resected AVM site.
They are mostly under control with the help of meds.
Your descriptions of the deja vu feeling is very common as what’s called an “aura” before a seizure occurs. You may already know this though.
It’s certainly a decision for you and your medical team, but has Dr. Howard recommended any prophylactic measures like anti-seizure drugs? They may help with the seizures, if they in fact are ones.
For me, this approach also helps with the fear associated with knowing I could have a seizure.
There’s an awful cycle of anxiety that can cause seizures themselves, and then worrying or being anxious causes more of them, making some progressively worse.
Sometimes, picking at clothing you’re wearing or having strange mouth movements are indicative of a focal seizure.
A 24 hour EEG with video monitoring can definitely show where the electrical disruption is coming from and at what intensity. It’s done in the hospital where you’re monitored by a medical team. You have a buzzer when you feel off and they come running if not already there!
I wish you peace in your journey and hope your treatment continues to address the CCM as best as possible.
Hello! Yes, i definitely understand the anxiety cycle and how stress can effect my number of seizures. Lately has been rather stressful and I’ve definitely been feeling it! My neurologist put me on a 750mg dose of Keppra. It has helped, but i still have a few small ones here and there. I suspect I might have my dose upped again soon.
Kallen,
I had an AVM back in 2002 on my occipital nerve, no surgery because of its location. Maybe 4 times a year when I’m in bed I’ll have th exact same symptoms you have. It will start with chills, and my legs start to shake. I’m fully aware of what is going on. As a matter of fact I can get up and walk around. It dosn’t last that long.i’m a little tired afterwards and just go to bed. I never heard of ccm and always thought it was a panic attack… I also have a collid cyst I have to keep an eye out on. My feeling on the ccm is this. If it doesn’t effect your life in a negative way and you can live with a little shake rattle and roll then just go with it. It is a little scary for sure. I’m just not interested in taking medications that might do more harm then good. Please keep us posted and I will as well.
In many ways, these things sound like migraine aura – things that can occur in the advent of a migraine. These are just the effects that something going on in our brains has on us. I don’t have migraines, though I had scintillating scotomas (another effect that can herald a migraine) after my embolization and again after an angiogram. My guess is that these things are caused by something going on – whether that be something migraine-like or as a side effect of a seizure.
My scintillating scotomas arrived and resolved within 20 minutes. I believe that is pretty typical of such things but it doesn’t tell us what the underlying mechanism is and whether to do something medical about it.
I have a copy of Migraine by Dr Oliver Sacks – the guy who was the doctor in the film Awakenings. He was a neurologist in the Bronx from the 1960s to perhaps the turn of the century. In it, Sacks describes an incredible breadth of different migraine aura that can occur. He also understands the distinction between seizure and migraine, while the boundary between what happens in migraine and what happens as an adjunct to a seizure is an incredibly grey area to me – from some of the descriptions I’ve read, there’s a fair bit of overlap or similarity at the edges.
So it’s impossible to know which your symptoms are part of and which @Kall6000’s are part of. Sacks also describes “migraine-like” symptoms and took the view in his book that any such migraine symptoms that don’t transit the body from left to right or vice versa are to be considered with some suspicion as not benign migraine but to be migraine-like symptoms provoked by something unusual going on, which would include things like disruption from an AVM or other things.
Based on my reading of Sacks’ book, I think it is possible for these kind of effects to be a part of seizure, a part of [benign] migraine or provoked by one’s brain AVM or CCM (or something else). It has to be for the doctors to advise us on which they believe it to relate to and advise us on any action we might take.
I’ve been watching this thread with a little interest, having read these things in the book.
Definitely sounds like some of my more minor focal seizures! When I was a kid it wouldnt happen super often, and would kinda be like 3 in a day and then not happen again for like a few months. Recently I was getting them much more often. I got put on 750 of Keppra. Still trying to get used to that over a month later.
I’ve been on Keppra for about a month and a half now. Been struggling with the brain fog, but it only seems like the last few days I’ve been rather irritable. Does it take a while to experience “keppra rage”? I guess it could also just be stress finally catching up to me.
Everyone tolerates seizure meds differently.
I only mentioned the rage because it is a known side effect of Keppra.
If things don’t improve with Keppra, it has a newer sister called Briviact. It works the same by targeting the sodium channels associated with seizure activity.
It’s just a little more accurate, newer, and made by the same manufacturer, It’s been a game changer for me, but that is a conversation between you and your doctor if you want to have it. Everyone’s different and has different side effects, especially if you take other seizure meds along with it.
However, I haven’t heard of anyone on forums or from neurologist that it has the same negative effect of irritability and maybe anger.
Hi Karen, always hard to say with these things, but these symptoms sound alot like my wifes optical migrains. Which use to be scary but now she takes this optical migrain pill, maybe lies down for a bit and the symtoms go away. She gets where its hard to see, hard to verbalize words, she does not get the tightness in the chest. We think it is often brought on by stress, bright light or maybe not eating or drinking right. Again hard to say.