Last trip 16 years ago

[nikkirae]

Hoping someone may help me...  From the age of 15 to 20, I tripped perhaps 30 times (one hit each time).  After my last trip, the only side effect that lingered was tracers.  These have faded and I only notice them at night when I am really tired.  I dealt with them and had no other ill effects...

 

Now skip to 11 years later...  My first symptom was a spinal cord lesion causing numbness from the chest down - resolved after taking IV steroids.  Over the past five years, I have had a wide range of neuro symptoms - each lasting up to a few hours or a few months then mostly resolving - including various visual disturbances, migraines (some with pain no aura, some with aura only), numbness around my eye after general anesthisia, numbness in my back after an epideral, 4 hours of stroke-like symptoms (ruled not a stroke but possibly a siezure or migraine), word substitution, mental blocks where I cannot remember or think things through, absentmindedness, cognitive dysfunction.  My last episode lasted 5 weeks and included fever (100.4 - 101.4), headaches, vertigo, mental blocks, absentmindedness, visual disturbances, possible seizure activity. 

 

Tests that have come back positive include MRI showing spinal cord lesion, spinal tap that showed inflammation of the brain and OG Bands (proof that episodes of inflammation originated in the brain), a slightly abnormal EEG (possible seizure activity), blood work showing I have an autoimmune disease.

 

My doctor suspects it is neuropsychiatric lupus.  I also just started seeing a therapist who says she thinks my acid use could be causing my symptoms.  I don't believe that after all these years of being fine, I would all of a sudden start having complications.  After my last trip, I had no cognitive or neurological symptoms - went on to graduate college (3.85 with a double major in psych and sociology), overcame the depression that led to my drug use in the first place, stayed drug free and only drank alcohol in moderation (even gave this up 6 years ago - before my neuro symptoms).  I am leary about bringing this up to my doctors because I don't want them to get side tracked if it isn't a feasible explanation.  But if it is the cause, what can even be done about it?  I can't go on with all these issues and I am hoping the therapist is just reaching.  Does anyone have any experience with this?  To be fine for over a decade then all of a sudden start having problems?

 

I'm sorry this is so long but I would appreciate any responses.

[onedayillsailagain]

Certain diseases may lie dormant for years (like Lyme) before being triggered by another event. There's no plausible reason why this couldn't be the case with HPPD.
That said though, it seems like you have had quite a medical history there. IV steroids could have lead to some of your symptoms. Anesthesia is sometimes done (in concurrence) with anti-cholinergics, which are known to exhibit HPPD-like symptoms. Scopolamine seems to be popular, but should rather be avoided at all costs.

What medications are you currently on? These could also be contributing to your symptoms.
Along with your Encephalitis I'd say it be a good idea to rule out TBE. Lupus seems to be one of those things that doctors bring up when they've no clue what you have.

Anyway, knowing your current medication would help in helping you.

All the best.

[disguyhere]

there's also something in the line of lupus that is somewhat rarer but with immune system and neurological impacts that can make hppd symptoms worse, or even emulate their impact.

 

Anti Phospholipid Syndrome, or APLS. 

 

It's kind of an all encompassing immune disorder, hard to diagnose without specific tests. Lupus can be a symptom of APLS. Same goes for aenimia, mild to severe schizophrenic episodes, minor but frequent localized strokes and heart attacks, incidents where healthy cells are mistakenly attacked by the immune system causing frequent illness, stomach problems, nerve system problems (including muscle twitches, bloodflow issues, and random pains).. it goes on.. my grandfather died after a 3 year run with at least 50+ "micro" heart attacks. Just kept collapsing but the doctors couldnt figure out why. They only found out after he passed that he had APLS, not that they couldve changed anything, but iron supplements may have extended his life a little longer. Found out a year later my mom had it, and then 2 years later I did as well. The genetic bitchslap of fate :\ .. 

 

anyways the point of that is to concur with oneday.. Rule out or address the impact from any other physical disorder. If there are things you can address medically get them addressed, and if there is anything lingering after that is addressed then and the symptoms are in line with hppd, then you see if theres anything that works for that for you. 

 

hopefully you fair better then me on that front, and dont wind up on a steady diet of pills that seem to do nothing anymore but prolong the inevitable. 

[nikkirae]

^{Thank you for your responses.  I have only been taking synthroid for hypothyroid long term; have had 3 days of IV steroids back in 2008 for the transverse myelitis and 3 days in 2010 for numbness around my eyes.  I am negative for lyme disease and apls. They have done a lot of blood tests and everything is coming back negative except for a positive ANA.  Aside from the numbness, I did not have any other symptoms occur around the anesthesia.  I am about to start plaquenil and low dose steroids to see if that helps.  I want to start taking something because it is hard to function as I've been but I want to make sure I am on the right track as well.} 

 

^{From what I am reading, HPPD is persistent.  Mine come and go and they vary in types of visual effects - I have had black spots, floaters, white pinpoints of light.  The visuals have not been really bad and are more of an annoyance to me.  I have spent some time reading about HPPD and it doesn't sound like what I have but I just wanted to check if anyone else has had similar symptoms in addition to the HPPD.  Thank you again for your help.  I have two little boys and getting my head straight is important to the life I can offer them, and correct diagnosis is the key} 

 

 

^{(Edited to change font)}

[disguyhere]

glad to hear the negative on the apls... having it guarantees a lifetime of suckage.. :\ i hope you figure out what's going on and are able to treat it. Good luck to you.

 

 

<editted> .. sorry for the moment of pessimism there.. doesn't necessarily guarantee a lifetime of suckage... just a good deal of it :\ .. just realized how negative that came out