November 20, 2012,
J.C. asks from Tyler, TX on December 13, 2011
Strange Dream-like Episodes, Chronic Joint Pain and Memory Loss. Help!
My episodes started just days after I had a maxillofacial surgery done to correct a jaw problem 12 years ago. In the last few years, I've found my episodes to be more cyclical, coming on every 3 weeks or so. They come on suddenly beginning in the morning or even in my sleep (it will wake me up) and then I know it will be an episode day. I'll have several, even up to maybe 10 that day. The next day usually comes with some anxiety, feeling that it's going to happen again. But it generally only happens once or twice in the couple of days following that initial episode day. I call these aftershocks. The episodes are as though suddenly dreaming while conscious. My mind suddenly goes to a strange, yet familiar dream-like state for just a few moments. There's a sort déjà vu feeling. It's a feeling of almost intense familiarity that only seems to make sense while I'm in that brief state. Theres almost a feeling of revelation in it. It isn't scary while it's happening. As odd as it sounds, it's almost feels like a window to another reality or consciousness for that moment. I'm sure it's nothing so grand, and I'm pretty sure even while it's happening that the visual aspect wouldn't make much sense to my "conscious" self, but there's an indescribable feeling that comes with. I've had the feeling of finding some sort of key to great understanding. I've even had a sensation of seeing and understanding death. I don't truly remember it, and the feeling/sensation is gone just as quickly as it came on, but I am sometimes left with an "imprint" of what I just experienced. Not so much a memory, but just a vague idea of what I saw and "understood" in those few moments as I desperately try to hold on to it and remember what I'm experiencing. Just as i'm trying to process and hold on to some piece of what I'm seeing and experiencing, it vanishes, leaving me "foggy" and unable to process virtually any information for several moments. I'm aware of where I am and what's going on the whole time, but for the life of me, I can't get out two words to respond to anyone until my brain has this moment to "reboot". I know who's around me, i know what's going on, I just can't process words or speech. I am unable to communicate for several seconds. I often get flushed and suddenly sweaty at that point. It lasts only a minute, but my silence and slight perspiration are generally the only clues to others that anything just happened to me. I maintain muscle control and motor skills just fine during these episodes, though I may feel a bit weak, but it's just as if the dream center of my brain is suddenly cued or stimulated. While the episode/experience itself is generally not scary, the aftermath can be. It leaves me with some anxiety and sometimes a bit of fear. But give me a half hour, I might not be thinking about it all. It's not a panic attack and I've never thought of it as a seizure, as I understand them. But now, reading some of these answers it seems a strong possibility.
I've been tested my numerous doctors. A neurologist and even an allergist. No one can tell me anything. At best I feel like they've humored me. I should also mention I've experienced some memory issues beginning at the same time. I have holes in my memory sometimes. Sometimes someone will say "hey, you remember when...?" and I'll have no idea. What's stranger, is that I might think about it the next day and suddenly I do remember. One more thing: and it might be totally unrelated (but I doubt it, as it started shortly after that surgery as well), but I have chronic knee pain. Both my knees ache moste of the time, sometimes a lot more than others, but it's always both and always symmetrical. It's not any one isolated spot, it's the whole knee area. Its a strange dull ache, sort of like a pressure. In the last few years it's been my lower back and hips as well. Again, I've been to the rheumatologist, the chiropractor, the neurologist and had the blood tests and X-rays. Everything says I'm tip-top. There's no damage or inflammation. All outside indications are that I'm young (33 now) and in terrific shape and health. And yet I deal with these "episodes" that I still struggle with to even describe, my lower body aches like I imagine a 90yo would feel like, and I struggle to remember someone's name even 1 minute after they tell me. I may well have three separate problems going on, but they all started after that jaw surgery on Christmas eve of 1999. No one has given me a clue as to what might be wrong with me and it scares me. It scares my wife and my kids don't even know yet. It's so frustrating to try to explain all over again to te next doctor and then to have them ask the same questions and then just humor me as though it's all in my head. I've spent my entire adult life like this and it is a tremendous burden.
Can anyone else relate or shed some light on what this is? Any help or input is appreciated. Thank you!
So What Happened?™
So, indeed, earlier this year I was diagnosed with Temporal Lobe Epilepsy. I've been experiencing Simple and Complex Partial Seizures all along. Shortly after that diagnosis, I discovered that I also have low testosterone. The doctors dismiss it, but I've read that it can be a long-term side effect of epilepsy. Personally, there's not a doubt in my mind. And as for the chronic pain, it continues to get worse and I still don't have an answer. After a rheumatologist, blood tests, xrays and eventually an MRI, I'm told everything looks fine and don't know what to tell me. They also dismiss that it's related. Given the nature of the pain, I have no doubt that it's neurological. I've recently been reading about Restless Leg Syndrome and I see a lot of similarities. That's my next investigation. So all in all, I'm getting successful treatment for the seizures, and my low T is being treated, but with disappointing results thus far. My pain and stiffness makes me miserable and so very tired, but I'm determined to find the answer.
I appreciate the feedback from all of you. I'm very grateful.
☆.A. answers from Pittsburgh on December 13, 2011
I am not a doctor, but this sounds a lot like epilepsy to me:
Epilepsy doesn't always "look" like the stereotypical seizures we think identify it.
All the best!
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R.J. answers from Seattle on December 13, 2011
Well... the first bit sounds like my migraines pre and post migraine (aka sans the pain bit). Which is double interesting... since it's been determined that mine are triggered by the ganglia in my neck and then arc across through either my facial or trigeminal nerve (which travel through one's jaw and across one's face), into my brain, triggering the migraine OR from sinus pressure leaning on my facial or trigeminal nerve. Bimonthly massage... to keep my neck from turning into rebar and impinging on the ganglia stops 90% of them. Taking sudafed at the first sign of a migraine when my sinuses are feeling chippy stomps on those ones.
Without massage and sudafed I have anywhere from 2-6 migraines a week.
With them... I go months without them.
I ALSO HAVE TO AGREE with Denise. Sounds like a form of epilepsy as well. Mine is purely vascular (once my facial and trigeminal nerves had had their freakout), but any change in the brain; electrical, chemical, vascular... can have the effects you're talking about.
AND what you're describing can ALSO be a sign of bipolarity.
((AKA 3 examples of vascular, electrical, and chemical)).
The second bit? (About joints) I tore mine up through years of being an athlete... so no help for you there! Mine are a mess, but there is direct cause.
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D.B. answers from Charlotte on December 13, 2011
Did the neurologist do a brain scan while this was going on? You should ask for this. The brain scans last for a good while, so during this, they should be able to see it in the scan.
By the way, did you read Kaylyn's post on Katie's thread? She makes a good point about her pituitary glan. Ask for blood work to check that too.
Ask for this. You really need to get to the bottom of it.
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B.A. answers from Philadelphia on November 20, 2012
I have exactly what you describe and have experienced it since I was in my mid-20's (I'm 45 now). You did a great job of describing the feeling. Here is another link to a site where the description is perfect.
I disagree with whomever said it sounds like epilepsy. I have read extensively about every form of epilespy and there is nothing that matches my symptoms. I have had an EEG and MRI, both were normal.
Since I have an exceptional memory, my doctor suggested I research to see if this might be common in people with an Eidtic memory or Highly Superior Autobiographical Memory.
I have these episodes about twice a year. The little "dream remembering spells" last about 30 seconds, I have about 5 a day for 2-3 days and then the whole episode's over. One thing that is different with me is that I know when it's coming on but I can still talk to someone while its happening. Sometimes a word will trigger the episode and I am sure what I am experiencing are my past dreams. Sometimes they are dreams from the day before and sometimes they are dreams that are years old.
Also, what's different about my episodes is, not only can I have a conversation with someone while they are happening, I am completely aware of my surroundings, I don't get confused and they actually make me feel exhilarated. I never feel nauseous or drained.
I used to try to explain to my ex-husband what it feels like while it was happening but he just thought I was crazy.
I would love to hear any updates from previous posters on this topic.
L.C. answers from Dallas on December 14, 2011
Dr. Tammy Pon in Plano is an amazing doctor and she is a functional Doctor which means she is both western and eastern medicines. She is BRILLIANT and uses supplements etc. to help and she will FIND OUT what is wrong before treating you! Email me if you want her info and also you could try classical homeopathy. I would go the alternative route since the doctors are already writing it off! There is a reason for this happening and it just takes someone who is willing to think "out of the box" to figure it out! Dr. Pon saved my health after going to MANY doctors who couldn't figure things out!!! She is also VERY caring and listens!!!!! She won't give up on you either until she finds what is going on.
C.C. answers from Houston on December 13, 2011
Have you ever thought that maybe you have been reincarnated? Strange set of symptons...I must say. Just print your post out and take it to the doctor with you next time...you did and awesome job of describing.
P.M. answers from Portland on December 13, 2011
I had an acquaintance a long time back who had episodes that sounded much like yours. After much testing and investigation, her doctors more or less assumed it was an unusual and mild presentation of epilepsy. it was enough to keep her from driving, however.
As for the joint pain, that could be completely unrelated, or, if inflammation has anything to do with your episodes, you might get some relief from either one or both by increasing your intake of omega-3 fatty acids. Fish oil is dependable, but I just can't down enough of it to make a difference. But I do well with krill oil – same benefits on much smaller doses. I take up to 6 capsules a day, and notice that when I take it regularly, my joints hurt less. And Omega-3's are known to be beneficial for nerve health.
Wishing you well.