Seizures v. Complicated Migraines
July 15, 2008
In June 2005, I was under the care of Dr. Headupmyarse. After my MRI showed only one white spot, my TEE was normal the doc decided I was having seizures even though my EEG was normal. Depakote was the drug of choice. To say I do not like Depakote is a huge understatement. Depakote turned me in to a zombie. A zombie that still had all the symptoms I started with: incoordination, vertigo, trouble walking, loss of sensation, severe tiredness, etc. The incoordination, loss of sensation and trouble walking affected mostly my right side with some left side involvement.
After several months on Depakote without any change, Dr. Headupmyarse decided to do another MRI. This time he felt that I did sound like a case of primary progressive multiple sclerosis. So this time I had a brain and c-spine MRI. By now you can guess the results-except for a small white spot, normal.
Dr. Headupmyarse decided instead of seizures as Depakote should keep them under control, I must have complicated or ocular or basilar migraines. Weening off Depakote and onto Topamax (liked even less than Depakote) took about six more weeks. By this time it is October and we are getting upset with this neurologist. He seemed close his eyes, open the big book of neurology, and stab at a disease with his index finger. Some type of migraine du jour.
I went from feeling like a zombie to a deep dark place on Topamax. And no, I was not any better off. My symptoms kept progressing and we were now worried. Dr. Headupmyarse certainly lived up to this name.
All the while, my pcp kept thinking I had multiple sclerosis. Finally, during the first week of December I suffered pain and extreme stiff in my right leg. My pcp reexamined me, and again thought it looked like MS. So, I asked if he could recommend another neurlogist. He did and I had an appointment in mid-January.
I went to a well respected clinic in an adjoining state. It took about an hour drive, but at this point hubby and I would drive a day if needed. Armed with my pcp’s notes, Dr. Headupmyarse’s notes, and MRIs I met Dr. Corporation. She spent about an hour and a half with us. She took my entire story asked many questions then reviewed my notes and MRIs.
Her recommendation was do a seven day EEG to rule out seizures, migraines, etc. Also have brain, c-spine, t-spine and lumbar MRIs. Add to that about 50 different blood tests. “In cases like this, it sometimes takes months before we can nail down a diagnosis, but we’ll get there.” Those were her exact words. HOPE. She gave us hope. So, why do I call her Dr. Corporation. Keep reading, you’ll see.
For the next six weeks I went through tests and waited for early March 2006. I knew Dr. Corporation would help me, help us. She seemed so kind. By this time, my right leg was stiff like a cement pillar, my left leg was only slightly better. I kept dragging my toes as I made my way. My legs felt as heavy as cement pillars as well. I would say “as I walked” but by this time on one could really call it walking. Severe vertigo made it impossible for me to drive. Sometimes all I could do was sit on my couch. My hands were losing sensation like my legs and incoordination had spread to the hands as well. I still felt very, very tired.
On the drive to my follow-up appointment with Dr. Corporation hubby and I spoke about the real possibility that I had multiple sclerosis like my two sisters. One sister was already diagnosed with MS when I started with my issues. She was on Copaxone and doing pretty well. My other sister went to her pcp and told him about some cognitive issues she was having along with her history over the past seven years of repeatedly being down with “unknown viruses” for a couple of months a time before recovering. After blood work and brain MRI, she was diagnosed with relapsing remitting multiple sclerosis like my other sister.
Hubby reminded my that although my pcp thinks MS, I was very different than my sisters. They had distinct relapses then recovery. I continually slid downwards with worsening of symptoms a few new ones. I knew Dr. Corporation would help; she seemed like she cared, wanted to help, knew how to help.
In Dr. Corporation’s empty waiting room we sat for almost an hour before being quickly (quick was not easy for me) ushered into an exam room. Dr. Corporation opened the door and without even closing the door she told me my tests were all negative. There was nothing else she could do. THAT WAS IT! FIVE SECONDS AT BEST! Then she turned to leave.
“Wait!” hubby pleaded. She slowly returned to the room. I wanted to know if I could get off Topamax if my EEG was normal. I could. There must be something wrong with me, look at me. You said you could help, may take awhile. “I was wrong.” That was her response.
I have since found out that this “well respected clinic” had a great track record treating MS patients because they accept or treat only those patients that can be successfully treated. She was just following Corporate Policy hence Dr. Corporation.
Hopeless. That is all I felt. Hopeless.
TIAs v. Seizures
July 13, 2008
In June 2005 after a hospitalization for episodes, from which I never fully recovered, of slurred speech, incoordination, vertigo, trouble walking, loss of sensation, etc. See previous posts. I followed up with the attending neurologist I saw in the hospital. After my MRI showed a small white spot and Dr. Headupmyarse (a complement really) decided that the MRI was normal, really. He scheduled me for a TEE (tran-esophageal echo) to rule out TIAs (Transient Ischemic Attacks or mini-strokes). He also scheduled me for a vascular ultrasound to look for stenosis in the carotid artery, assuring me that both tests would be normal. See, even after an EEG showed no seizure activity whatsoever-I mean nil, none, zero, NO ACTIVITY-Dr. Headupmyarse felt I was experiencing seizures.
Within a few days I arrived at the cardiac suite of my local hospital for my tests. Luckily, I was scheduled for back to back tests. First was the vascular ultrasound. This is exactly what it sounds like. They gooped up my neck and with their magic ultrasound wand began imaging my carotid arteries on either side of my neck. This was easy as pie. About thirty minutes or so later I was back in the waiting room. I had twenty or so minutes to fill while waiting for the TEE.
The waiting room housed about twenty chairs of which eighteen were filled. I sat next to an elderly gentleman. No sooner did my butt hit the seat and he began telling me all about his wife. She was in the exam room right then and he was worried. This guy looked about 80 years old. I was pretty worried about my test; I did not want to have TIAs. Listening to this gentleman speak so lovingly about his wife, seeing the worry on his face and in his eyes really kept my mind off me. He obviously needed to speak to someone and I was glad to be that person.
The time flew by and my name was called by the nurse. Wishing the man and his wife well, I took a deep breath and followed the nurse into the exam room. The room was furnished with a hospital bed, a wall of cabients, and a machine upon which sat a monitor. I changed as the nurse explained the procedure. In my hand the nurse put in an IV into which she would administer a sedative, the doc would spray my throat with an anesthetic to numb it. Finally, the doc positions a flexible tube with a transducer on the end into my esophagus. The transducer is positioned in the esophagus just behind the heart. The TEE looks for any defect in the heart or strokes as a result of blood clots.
Guess what!? Both tests were normal. Yeehaw! Dr. Headupmyarse decided it was seizures, so I got Depakote. Now we, me and hubby, felt somewhat uncomforable with the diagnosis. Now you’re thinking if the ultrasound and TEE were normal ruling out stenosis and TIAs then why didn’t a normal EEG rule out seizures. We had the same question. Dr. Headupmyarse had an answer. Sometimes seizure activity does not show up on an EEG, espcially a sleep deprived EEG in which the patient does not fall asleep. That’s me.
We were told by the EEG tech that sometimes docs like to do another EEG or possible a three, five, or seven day EEG to be sure about seizures. But not Dr. Headupmyarse. Oh no, he was so sure that additional EEGs were unnecessary and would delay treatment. There was the rub. We could insist (and my hubby did try to insist) on additional EEGs, but did we really want to delay treatment. He told us that if the brain continues to have seizures for too long then seizures would become permanent. That was the key. He said you needed to be medicated now or face permanent seizures. Pretty scary stuff. Now we know pretty incorrect stuff as well. Dr. Headupmyarse just wanted me medicated, nice quick and easy. Collect his pay without much work. Once you’re on Depakote you can’t just stop it. Nice. So now Dr. Headupmyarse would get quick easy RECURRING payments. Sweet racket he ran. At that point I just wanted it to be something correctable, fixable, a return to normal even though deep down I knew and hubby knew that wasn’t the case.
I was going to be different for him. I was never a by the book person. In fact, most of the time I abhor “by the book”.
Hospitalization
July 11, 2008
So, there I was in the hospital. I landed there after several episodes of severe vertigo, slurred speech, incoordination, trouble walking (like my legs no longer communicated with my brain), extreme fatigue. Hubby brought me into the ER of my local hospital.
When the triage nurse brought me in to get the particulars of my case it was clear something was wrong. I could understand the nurse’s questions but took awhile to find the words, then slurred as I answered. Immediately, I was given a room in the ER. Docs came in, ordered heart monitor, oxygen sensor on my finger. You know the routine. Once the docs found out there was a family history of heart problems (I was 37 years old at the time-only a few years younger than my dad’s first heart attack), a nitro pill was stuck under my tongue.
What a picture: me laying in a hospital bed with wires from my chest and fingers connected to beeping machines on the wall, blood pressure cuff automatically taking readings every few minutes, hubby and son (one on each side of the bed) holding my hands. I think they were holding my hand out of worry themselves more than me. I knew something was seriously wrong before this point, I knew the moment I “shut down” (see previous post:Back to the beginning). This was just the beginning of the rest of my life, just not in the way you normally think of it.
After my heart proved strong and healthy (knew it wasn’t my heart-it felt deeper than that-a permanent change). Docs decided to keep me overnight for observation. Something didn’t add up to them. Not a stroke as I seemed to recover almost completely.
The next morning the attending pcp went over the plan. I was to have an MRI and/or CT scan, follow up with the attending neurologist and then discharged. I’ll call the neurologist Dr. Headupmyarse. I didn’t think of him like this at first but by the end of six months Headupmyarse is the nicest name I can think of.
Without even seeing or talking to me, Dr. Headupmyarse ordered only an MRI without constrast. I had only a brain MRI. I say only because I continue to have brain, c-spine, t-spine, and lumbar MRIs. Anyway, this was my first foray into MRIs. I hate tight spaces to begin with. Yes, I did squeeze the panic bulb. Several times. But I got through it and so did the techs.
Several hours late Dr. Headupmyarse came in to exam me. He slowly took down my story, painfully slow, but hey that’s a good thing, right. Then he examined me. Follow the finger upon which I noticed and informed him that I was experiencing double vision. Then came the pin test. Basically, the doc bends an ordinary safety pin and pokes you like you’re a human pin cushion. My right side in general felt the poke but it felt dull, not sharp. My right leg from the knee down felt nothing. I mean NOTHING! I watched the pin go in, felt nothing, saw look on hubby and son. Wow! That’s weird and not in a good way. Dr. Headupmyarse didn’t really seem to show anything. The test continued. He took the end of his metal handled reflex hammer and ran it up the soles of my feet. NOTHING! No response, felt nothing.
My son, whose favorite past time was trying to tickle my feet without getting kicked in the process. Kicking was an involuntary response when my feet were tickled. My son pushed past Dr. Headupmyarse and tried unsuccessfully to tickle me. He looked from me to his dad as my hubby explained to the doc how ticklish my feet used to be. Again no response from Dr. Headupmyarse. Finally, he went to exam my MRI.
Good news! My MRI was clear except for one small white spot which was nothing to worry about. So what was wrong? Well, Dr. Headupmyarse decided and the way he explained it seem to make sense to us that it was probably seizures or TIAs. TIAs are small strokes that leave no permanent damage, but can lead to a massive stroke. His treatment plan called for me to go home and on Monday (it was currently Sunday) his office would call with an appointment for a TEE (trans-esophageal echocardiogram) which would rule out TIAs. No EEG because several days before this hospitalization I had an EEG which, you guessed it, was normal- No signs of any seizure activity.
I went home. My hubby, my son, and I drove home in silence. We figured it had to be TIAs becasue the EEG was normal. And yes, I did go home and research TIAs and TEE on the internet. Bad move, but I needed to because that was all I could do until the next day. TIAs certainly were a permanent change, but after reading about them I didn’t really think I fit the description completely. Although later I met a doc who told me sometimes diseases don’t read the textbooks and act differently or Atypically-sound familiar.
Back to the beginning
July 9, 2008
So, in previous “The Beginning” post I spoke about the very beginning when I first noticed something was wrong, but not quite ready to go to a doctor. The saga continues.
In addition to my legs not working right, etc, I felt very tired. My hikes became shorter, I traversed easier trails because I would lose my breath, I felt tired, very tired. I would even say fatigued. Then several times heading home with my dogs I passed out while walking. Opening one eye I spied a sloppy, drippy pink tongue lapping my face. Then a petite bubble gum tongue. Then a sloppy, drippy tongue. My lab, followed by my dachshund, lab, dachshund. You get the picture.
During a family vacation to Maine, I passed out while we were exploring a jetty. That was when I told my hubby about the times with my dog. That Monday I went into my pcp’s office. Well, being in an office with about twelve other docs, I actually saw a physician assistant. He did a few tests: follow the finger, lay down take BP (blood pressure), stand up take BP. All seemed fine. I told him about losing my breath while hiking, that I felt tired. He set me up with an EEG and a halter monitor to check my heart over three days.
I followed up with my actual pcp. The results were normal, of course. My pcp, I’ll call him Dr. Callous. Dr. Callous told me I just needed to get in shape, more exercise. Granted I was not a skinny minnie, but I was not overweight. In fact, I told him theses events were happening while hiking, that I actually had to REDUCE the intensity and length of these hikes. While grabbing the door knob, he nodded that patronizing nod and left. Moronic callous idiot.
Several weeks later I landed in the hospital. On a family drive through the country I passed out behind the wheel. YES, BEHIND THE WHEEL WITH MY HUBBY AND MY SON IN THE CAR. I know, scary right. Well, we took off the top to our Jeep Wrangler Unlimited and hopped in for a Friday night joy ride on some pretty small back roads. I drove. I love that Jeep. And we drove. After about two hours we pulled into a dirt parking lot of a small ice cream stand.
The great thing about Jeeps is that owners form a bond, a brotherhood so to speak. There is the Jeep wave as you pass another on the road. Or, as we experienced at that ice cream stand another family of Wrangler owners came over to chit chat. It was a nice hour or so just passing the time.
Dusk set in and we took off for home. With the top down and the heat blasting we made our way on these back roads. I was driving into the setting sun for awhile. Then on a road meant for one car, literally, I felt my system shut down. That is the best way I can describe it. It is like someone hit the “restart” button on my computer.
I immediately pulled over put the car in park, just as I went out. Faded to black. Faded to black in a weird way. From my peripheral to my center I felt everything shut down. Then just as quickly everything came back. Everything you say, yes that is how it felt. My vision, sense of feeling, heart, consciousness. SCARY!
Scary not just for me but for my family as well. Being about and hour and a half away from any civilization my hubby helped me into the back while he took over the driving duties. Not to scare our son, my hubby and I downplayed the situation. But, by the time we got home I was beginning to feel better; although, extremely weak. EXTREMELY WEAK.
No, I did not go to the hospital then. But over the course of the next week and a half I had similar experiences. Including slurred speech, numbness, incoordination. Basically, everything but the passing out part. During the third episode hubby drove me to the hospital. Enough is Enough he said.
This is where the story gets interesting.
Atypical Multiple Sclerosis 