SO.... if you don't want to read about me on my current soap box then please... don't continue to read.
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| Pynki in the Brain 05-07-2007 |
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For some who don't know, I had a 2.8x3.2cm meningioma brain tumor (named Pynki) removed from the right front lobe of my brain back on May 30th, 2007. I spent the first year in lots of pain due to nerve damage, lots of memory and retention issues and I gained 40 pounds between diagnosis and 1 month post surgery. (2 months.) The second year started to get better... took some time, lost a tiny bit of the weight but still having memory and retention issues. Year three... I thought things were going to get back to "normal" and I would have my at least some part of my old life back... work etc. NOT
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| 24 hour post op, looked better here than I did 2 days later! |
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| 2010 MRI |
So, my newest problem originated back last year mid spring … which is why we had the MRI and EEG done. When the MRI showed clear and I got the EEG results as “seizure like activity”. I bailed and ran scared I guess you could say. Between finances and fear did not follow up with Neuro. Over the next months it was pretty mild and employment was my focus. I got a part time job at Home Depot but then they kept putting me out in the 100+ temps every day and that seemed to aggravate things some. I blamed the weather and job and stress. I ended that job after several attempts to fix the problem. Later I obtained a temporary job as a “parts clerk” that was a full time position. I really enjoyed the job but the episodes were still around. When that job abruptly ended the episodes seemed to increase in frequency (not really intensity tho). I blamed the stress. I eventually went to the Doc (primary care), explained things and well… was put on anti-anxiety meds. This helped part of the problem… the anxiety that was a result of the actual problem come to find out. Gee… you’d think after a life time of this crap I’d be used to it.
So the anxiety meds treated the “problems getting a deep breath” which in turn took care of the chest pain that was caused by my trying to breathe which I guess was caused by my panic from the other symptoms. The original symptoms being my lips turning purple, a strange and sometimes painful sensation across the front part of the top of my head, my speech slurring, my words becoming garbled and mixed up, loss of mental focus, and pain in the sides of my neck and or in the insides of my forearms, like the veins were being squeezed tightly.
Recently these episodes began to increase in frequency and intensity, so I made an appointment with my Neurologist and finally followed up on the EEG. We discussed what was going on, and the possibility that it was partial seizure activity that was in part a cause of these symptoms. However, he did not feel that it was the cause of the pain in my neck and arms. BUT first things first I guess.
SO… started me on Lamictal XR (05-26-2011). I am all for getting these episodes under control and if medication is the answer then I will concede. HOWEVER, after starting the low dose of the titration kit and being on it for a week, the seizures started to increase in frequency and intensity, then the evening of day 10 the chills started, the next day (Day 11) same thing but also had what I call the nods, not being tired but nodding off briefly,yet having no reason to be tired, (ie: blood pressure fine, blood sugar fine) and started to have more headaches and started having joint and muscle pain. During that day I was wearing a jacket in an 81° house and still feeling cold.
Day 12… same things but muscle pain and joint pain increase and the headaches really got bad. During these three days I still had the increased episodes that were fairly intense. (partly causing the bad headaches I think.) I ended up taking the clonazepam because I started having some anxiety and recognized the breathing issues. Also on Day 12 I called Neurologist office in the morning to express my concern at these symptoms as side effects from the medication, left message. The assistant returned my call and got the info and relayed to the doctor. I called back at 3pm to see if there was an answer yet but the doctor was running behind and would get back to me asap. At 5:30 the assistant called again with a request that I see my primary physician about these symptoms because the Neuro doc didn’t think they were caused by the medication and wanted to rule out infection, but wanted me to continue the medication. I at that time didn’t feel like everything was communicated to the Neuro so I reiterated the increase in the episodes etc. She then got back with the doctor and called me back saying that the Neuro said to stop the medication and make a follow-up appointment to discuss further medication options and that since I was unwilling to see a primary physician to rule out infection etc that was all they could do. I never refused to see my primary physician, I just felt like there had been miscommunication. UGH! Okay so I did not take the dose on the evening of day 12 (06-07-2011).
Day 13: So now I have an appointment set with my primary physician to rule out any underlying possible problems etc that could cause the symptoms. I am also waiting to hear from Neuro to schedule the follow-up appointment for change in medication. This is really quite annoying by the way. I really would have preferred to speak to the Neuro doc directly so that EVERYTHING was relayed correctly instead of being accused of refusing to do as requested. UGH. This morning I started off with episodes and chills, joint and muscle aches and a mild headache. It's mid-day now, the chills have mellowed a little but not gone. (Hmmm... but that can't be... the meds aren't the cause???!!!.... OMG!) My head is killing me tho... and the episodes are constant. I keep calling them episodes because they don't feel like seizure but then again I'm comparing them to the seizures I had earlier in life that were caused by the tumor itself.... so there would be a difference. :D
Okay... for now I'll stop ranting!
