- This topic has 11 replies, 3 voices, and was last updated 8 years ago by
.
-
Posts
-
Mog the Dog here. I just returned from my visit to the neurologist a.k.a. McNeuro’s.
I’m sure you all can relate to the fast food restaurant approach to modern medicine these days: The roped-off path to the reception desk, the 20-something-year-old robotic medical assistants, the open waiting room inside the exam room area where you can hear all of the venting the doctors are doing about their unwieldy patient loads, and then the office visit itself in which you hoped for a gourmet meal and ended up instead with a machine-masticated pasteurized processed meat food product…
The neurologist was the worst listener I have ever encountered. Right after I explained that I experienced phantom sensations of hot/cold on my feet and scalp during the episode, she asked me if I ever had any abnormal sensory experiences in addition to the full head feeling. I got short with her and said, “Like I just told you, I experienced phantom sensations…”. She was staring at her computer the whole time, and she fessed up that she was reading my CT scan while I was talking.
Fortunately, she is going to refer me to the Stanford University Center for Sleep Sciences and Medicine because she suspects a sleep disorder more than epilepsy. She’ll do an EEG and MRI first. Her office staff want to do the EEG in the early morning – the only time of day that I never get the symptoms. I managed to get them to do a 1:00 p.m. appointment, but that was the latest time they would do. So much for trying to order steak and lobster at McDonalds…
MTD
Haha… The Luby’s of medical care. 😉 I was wondering what type of “episodes” you were having when you experienced the phantom pain?
I had a simple partial seizure a couple of weeks ago on the transition from wakefulness to sleep. It started with an agonizing full feeling in my head, progressed to abnormal sensory experiences and abnormal visual thought imagery and then resolved within a minute or two but left me really out of it.
The ER doc ruled out obvious tumors with the CT scan, but I was so out of it that I got dressed and walked out without going over the discharge instructions with the nurse. I also thought it was a good idea to make a 7-mile walk home at 2:00 a.m. after leaving the hospital. I walked 2 miles before spotting a cab at a gas station. The nice cab driver wanted to know all about my ails on the 5-mile drive home and wished me well. I figured it was more fun listening to my EDS adventures than driving drunk people around!
I have not been having normal brain activity during the transition from wakefulness to sleep for quite some time now. Hope to get to the bottom of it with the upcoming EEG and MRI.
MTD
MTD, It’s great that your doctors are ruling out the “regular stuff”. If they make it through their list, and end up befuddled, I’d be interested in digging deeper (if you’re willing!). Many, many of us have weird stuff happening between wakefulness and sleep. I wonder if you ever experienced feeling paralyzed when this happens? Any auditory or visual hallucinations? I had them all! When you mention that fullness in your head, I immediately wonder about high intracranial pressure? Whatever is happening, please know it’s not just you! 😉
Yes, being the logical, analytical “old dog” that I am, I am always interested in delving deeper into what’s going on when the docs come up empty-handed. That’s how I discovered my platelet hyperaggregability problem after a 20-year undiagnosed journey through peripheral vestibular dysfunction Land.
After the UCSF neurotologist told me back in 1998 that chronic, disabling vestibular dysfunction was my cross to bear in life, I proved him wrong by reading his 1500-page textbook in order to know where not to look when I delved into a comprehensive Medline search.
Interestingly, it was the keyword searches “Ehlers Danlos platelet” and then “platelet vertigo” that led the way to learning that my platelets were clumping up and impeding the microcirculation to my inner ear. Plavix and aspirin cleared up all the vestibular symptoms and have kept them away for the most part.
So now with the weird head symptoms much worse, it’s time to return to research Land. I see that a lot has happened there since 1998!
By the way, I mentioned increased intracranial pressure to the Mc-neuro doc, and she instantly dismissed it saying she would have seen evidence of it in my eyes. Rest assured that I am looking for a new neurologist.
Can’t wait to see the results of my upcoming MRI.
MTD
Oh, I forgot to mention that I do experience isolated sleep paralysis and occasional hypnogogic and hypnopompic hallucinations, but they are not even remotely similar to the weird stuff I am experiencing now.
Gotta love someone willing to research their own condition! (birds of a feather…) If you made it through that text book, you *may* be able to make it through my book. lol. In it, you’ll find the references for IIHWOP (Idiopathic Intracranial Hypertension Without Papilledema). Papilledema is the condition your doctor mentions occurring in your eyes in many cases of IIH — but not in most of us! I think this is the major reason this is getting missed, BTW. I hope the book helps! 😉
Yes, I read your updated book a couple of weeks ago, and thank you! thank you! for all of your research and dedication to moving us forward in our understanding of how complex EDS really is.
I did take note of the section on IIHWOP and was thinking about it when the Mcneuro brushed off the idea of increased intracranial pressure.
p.s. Your book was a much finer read than the neurotolgist’s textbook, which I aptly renamed Everything you Never Wanted to Know About Neurotology!
MTD
Awesome! I hate to sound like a commercial, but you *may* be “one of us” and benefit from the discoveries we found. As you read, with connective tissue disorders, we are more prone to suffering from spontaneous spinal leaks after lumbar punctures, so I don’t recommend lumbar punctures just to prove our point. 😉 Instead, you may be able to tell a difference with Diamox (and/or Lasix) which is a safer route to choose. Many of my BIZZARO symptoms disappeared when I lowered my pressure. It is not the end of our symptoms, but likely a necessary first step. OK, I’m preaching to the choir… LOL SO glad to hear the book was a bit easier to digest for you. 😉
Yes, unfortunately, I am living proof that those of us with EDS should forego the lumbar puncture. I had it done at age 17 several years before I was diagnosed with EDS, and I had spinal fluid leakage for several weeks (and the excruciating headaches that went along with it). Never again.
Yes, I read your updated book a couple of weeks ago, and thank you! thank you! for all of your research and dedication to moving us forward in our understanding of how complex EDS really is.
I did take note of the section on IIHWOP and was thinking about it when the Mcneuro brushed off the idea of increased intracranial pressure.
p.s. Your book was a much finer read than the neurotolgist’s textbook, which I aptly renamed Everything you Never Wanted to Know About Neurotology!
MTD
LOL, MTD, I agree, oh and I’ve read a few of those too!
After much thought over the weekend, I cancelled the EEG. I was so horrified with the neurologist’s frighteningly incompetent listening skills that I really want nothing to do with McNeuro’s ever again. In addition, does it make sense to do two EEGs – one in the middle of the day at the neurologist’s office and then one done by a sleep specialist who will do it during the transition from wakefulness to sleep – the only time the symptoms occur? The only way it makes sense is if you are a doctor who is money driven rather than patient driven. She’ll get her profit from the EEG done in her office and then ship me to the sleep specialist. Uhhh, no she won’t.
So, I will get the MRI on the 28th and then take the results to a sleep specialist myself.
When they tell us to be our own best advocates in our medical care, they mean it!
MTD
- You must be logged in to reply to this topic.