I am a 47 year old woman, and I had an aneurysm clipping operation 3 years ago (NOT after a rupture), and am still having a few ongoing problems, and want to know if they are fairly normal. I also had a TBI the year before they discovered the aneurysm (that's how they discovered it), so that seems to be adding to the confusion.
I'm not getting answers from my Neurosurgeon or Neurologist - I suspect it may be either because it's difficult to separate the symptoms from the TBI and the aneurysm surgery, or perhaps because I live in New Zealand, and therefore the specialists here don't see as many cases as in larger countries.
The two main things I am concerned about are:
1. Fatigue - I have not yet been able to return to any kind of work, due to massive fatigue. I have sought advice about managing it, however I am still very restricted by the amount of sleep I need to function anywhere close to normally.
2. Seizures - I suffer from what my Neurologist calls "Pseudo-Seizures", on average about once per week. This is very concerning to me, especially because I have injured myself on several occasions. My GP has prescribed several different anti-seizure drug, on the recommendation of my Neurologist, however nothing has helped.
Has anyone had similar experiences to me, and if so, what has been your long term outcome?
Your seizure activity and getting this situation under control i'd think is pretty important , considering that you've experienced injuries already--does your Neuroligist know that the medications they've prescribed you really aren't helping? are you on other medications as well, such as for blood pressure, etc.?
And have you had your blood checked recently to make sure you've got the right amounts of red blood cells verses white blood cells, etc., and that you're not anemic? Anemia can really fatigue the hell out of you, so it might be worth looking into if you haven't done so already.. Even the seizure drugs can wipe you out, so maybe the meds have something to do with the ongoing fatigue..
I've experienced seizure activity but only while in the hospital or in an ambulance, and they let up after treatment each time...Sure would be nice if this was easy and clear cut, but it surely isn't. Hope you're able to nail the doctors down to get some answers though, as it sounds like you're in a holding pattern and are not 'living' life right now, and that is no good. Hope you get lots of other members responses on this, Peace,
What do you feel and what happens during these pseudo seizures? I am so sorry you are experiencing issues, it all so complicated. Do you have headaches as well?
Hi Victoria...it is good to see a post and update from you. I wish I could be of help...I was coiled, but wanted to stop by and say "Hello"...~ Colleen
Thanks Janet. You're right - I AM in a "holding pattern" right now, and it sucks!!! I have another appointment with my Neurologist on the 28th, so will be pushing for answers. I have always had a high white blood cell count, possibly due to kidney issues (I've had one removed due to multiple infection), but the fatigue has only been since my surgery. GP has checked me for anaenmia, and all normal there. Onwards and upwards, hopefully!
I'm not sure about the seizures, but I definitely know they get worse with stress/tiredness - under a lot of stress right now with family issues, and I had multiple seizures last night :(
Victoria.....I can say that the Fatigue is normal....it took me a good year to stop all of the naps...as for the seizures....I have no idea.....I was put on anti seizure meds for two months....I lost a patch of hair because of them but I have not been on them ever since.....my brain aneurysm was in 2009 and it ruptured, now I have coils and a stent. The only residual effects that I have now are numbness from my knees down and short term memory loss.
I was just diagnosed with complex partial seizures with impairment of consciousness.. I am confused as to why they would say yours are "Pseudo Seizures". They aren't sure but think that I may have been getting them shortly before I had my brain aneurysm clipping. I pray that they get yours under control soon. I was put on Lamictal and just started taking it yesterday. I have not experienced any injuries from mine. I do still have fatigue, but I have some heart issues too that could be causing that.
My annie was clipped 6 months ago, and the fatigue is just starting to lift, but it's not gone. Unfortunately, a small percentage of survivors carry the fatigue with them indefinitely. However, given your seizure situation, that could be a factor as well.
Either way, you deserve some answers, and I hope you can find some relief.
I really like this article; it gives you a list of what to cover with your doctor, and what to ask about. Be easy on yourself when you're tired; I give my body pep talks before I take a nap, LOL!
I do have the ftigue from a rupture and rest is very important. if you aint getting help find another neurologist. I been going on 5 yrs out and have some balance issues and understanding sometimes.
Reg gives some good practical information you can sink your teeth into. Although I've had no seizure issues since a SAH, 2nd aneurysm clipped, and hydrocephalus shunt, 4 years later the fatigue remains the biggest issue. Allowing sleep to be an important "indulgence" is important. For me, it's not an indulgence, but absolutely necessary for proper functioning, appropriate emotional responses, etc. I try to get 8-10 hours every night; ignore the impulse to see yourself as lazy. I also have to agree with Reg that keeping stress to a minimum has the greatest beneficial effect, and gives many great suggestions. I also use marijuana (in various un-smoked forms), and highly recommend it against stress, headaches and any nausea. You might want to look into the effects of marijuana on seizures - I'm pretty sure there's quite a bit of research on the subject.