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Head Sensations
Mon, 04/06/2015 - 12:57Hello everyone. Joe, Jazz (since you two are typically helpful) and anyone else. Just got back from the epilepsy doctor, and he thinks that the head sensations that I have tried to describe is scalp/forehead tingling/paresthesia (head tingling and numbness feeling) and tension headaches. I explained that I am feeling like my head is emiting static in pulses, and that the areas behind my ears feel very sore (with tinnitus), along with some other areas of my head feeling like this as well. The issue that I am having is that these headaches persist for longer than 12 hours when they hit, and they hit pretty frequently. Just got the patient summary, and it suggests/notes that I have generalized convulsive epilepsy with VEEG results showing bitemporal hsarp waves (are hsarp waves high sharp waves?). Lastly, it suggests that all of this was potentially triggered by toxic encephalopathy by daily benzo use (either .5 to 1mgs in the am and pm, mostly the former), as I have lower lumbar back issues and only took the larger dose when I felt like I needed it the most. I would have never taken this had I known that the medication was a "tranquilizer." I've had muscle relaxers before, but I thought that this medication was just like one of the simpler muscle relaxers. I was on this because of lower lumbar back issues such as a bulging/herniated disc, degenerative disc disease, and a peneurial cyst (possibly a nerve sheath tumor at the L5-S1 level that is masquerading as a peneurial cyst, aka a Tarlov cyst) I have not taken that stuff since I had those back-to-back-to-back seizures last year. I just got the patient summary via email after the appointment, and I am not satisfied with what it says.
Another issue that I have is that it notes that I have had an MRI, which isn't true, and I just emailed him back regarding this. I only had a CT scan, which was done at the hospital, and I know that MR I studies can reveal a lot of other things which do not show up on a CT scan. Given all of that which I have explained, what do you think I should do here? I believe that I should have an MRI to rule other things out, as I was never taking an excessive amount of medication beforehand, contrary to what the summary says (and yes, I notified the doctor of the discrepancy via email, as his office was very busy). So I never had the MRI which is formally done on folks whom have experienced multiple seizures (especially on the same day), as well as the fact that I never was taking excessive amounts of that benzodiazepine.
Had I known what the report was going to indicate, I would have brought the issues up in person, but was only made aware of it after the fact. But I don't want to wait several months for my next appointment. I emailed him but I doubt that I will get a response back.
And what can you say about the bitemporal hsarp waves (yes, that is the exact spelling)? Because it notes "bi-temporal," it does match the symptoms that I am experiencing in the temple areas (including the areas around the ears), as I had previously explained that I feel like my head is really numb along the sides and part of the top area, and that it "feels like" that the blood vessels in my temple areas are going to pop or rupture. This sucks.
In summary, I personally do not think that my seizure experience is due to adult onset or toxic encephalopathy as the summary suggests...The head sensationns seem like they are pretty serious. I highly think that there is a serious underlying cause here and would welcome your opinion. And yes, I do know that I need to follow-up with these concerns. BTW, I am only taking carbamazepine 200 mgs tabs every 12 hours. Also note that I have sinus tachyardia, and blood pressure is borderline high, although I am otherwise young (36), and have a normal weight/bmi. Sorry about rambling. Thanks.
don't worry I get my letters
Submitted by just_joe on Tue, 2015-04-07 - 13:39
don't worry I get my letters crossed at times. I think most of us can read between the lines.