I had GK last year and as a complication had swelling earlier this yr, was on Steroids for a few weeks but doing ok since then except that now I have constant headaches and the intensity of these headaches is gone up as well....so had a MRI and 'nothing sinister' is what i have been told in the MRI report which is a good news so now on Topamax since last one week for migrane prevention. Hopefully it should work but I have started noticing that when I get anxious or angry I have this weird tingling feeling in my head for a few seconds, it goes on if I continue to be anxious/angry but it disappears as soon as I calms down. You could call it pins and neeedles too sometimes...Its more in right/back side of my head(my AVM is left frontal).
I observed it a few times before as well when I was on steroids but it's quite noticeable now in last few days, I was having so many side effects of steroids that this came very last on my list to even mention to the doctors. I go back to my neurologist in Aug so wondering if anyone here have experienced it.
It does help Macker, thank you so much for your reply.
They have reduced on its own since I posted this discussion. Im now in 6th week of topamax and on 50mg/day, Headaches seems to be calming down too since about last 3-4 days so im hoping that it has to be topamax which is working on me but I have to wait for few more days to know for sure.
I was wondering if anyone else was experiencing this. I had a crainiotomy April 9th! I have been having similar pains in my head. My pain seems to be focused along the surgical scar and sometimes in the back of my head above my neck. Although my AVM was located in the left frontal lobe. I was told that the pains may be the healing process where the bone is begining to fuse. I am scheduled to see a headache specialist this week. I hope they can do something to resolve the issue!
I have been on the Topomax regimen since my gamma knife in February of this year, along with 2 rounds of steroids. I had a grand mal seizure in May. I have constant migraines that do not go away or decrease. I get the tingling sensations with or without anger or feelings of anxiousness. I also get sharp/stabbing pains at times. They both radiate from my avm location, left occipitemporal (back of my head) all the way to the front of my cheek bones. I get eyegraines, eye twitching - especially in my right eye. So, with that said, I'm on my second round of steroids due to the twitching and the migraines not going away, but now I can't sleep at night. Sigh....I go back in 2 months to follow up with this. But on 8/14 I go for my 6 month mri on the gamma knife surgery, so we'll see what happens with my surgeons.
Reading your post made me think I was reading my own at first. How many mg/day are you on the steroids? I have taken steroids SEVERAL times since GK. I actually just started this morning b/c of more swelling. I'm only taking 2mg/day, I was taking 16 mg/day at one point. I started feeling tingling in my left hand and foot and my dr. had me on Topamax for quite a while, but they quit working. Idk if its normal to feel that, but I know I did.
I was having major headaches (thats what made me think I was swelling again) but today it isn't too bad. Hjopefully they will start to subside.
I had GK in Jan I also have the sensation of what I refer to as tremors in my head.. I get a sensation of heaviness and then it comes on. I experience them for only a few seconds for up to a minute and then it passes. Sometimes it comes and goes throughout the day and other day nothing. My neurosurgeon and neuro havent' put me on steroids or seizure meds and I just got the wonderful news that my 6 month mri showed the avm shrinking slightly at this time! I have read posts that say our brains go haywire when the avm is shrinking....so here's hope for all of us!
I had CyberKnife surgery in June of this year and have similar weird feelings, I only know how to describe it as "strange". I have noticed I can trigger that feeling with rapid eye movement so I wondered if it is "pre-seizure activity". I discussed it with my doctor and he didn't seem too concerned. I have had the constant headaches since January of this year, that is how my AVM was diagnosed. It is actually a relief to see so many others experience the "tingling" as well, I think if you haven't experienced it it is hard to understand. Sending prayers for you Ky.
I was doing that a lot but now I hardly ever feel it. It was kinda like the feeling that you get when you get a chill and shiver all over except it was just on the left side of my head. Weird feeling. Started after I had my first embolization.
Hi Zilly, From your description: "I get the tingling sensations with or without anger or feelings of anxiousness. I also get sharp/stabbing pains at times. They both radiate from my avm location, left occipitemporal (back of my head) all the way to the front of my cheek bones."
I would strongly encourage you discuss the ?possibilities? of these sensations being what is know as central pain syndrome, CPS w/ your neuro drs. http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm
Best wishes.