For a while I've been having these strange episodes, which seem neurological. I've mainly been a 'pain lymie' though I have a lot of fatigue and neuropathy, and some mild cognitive problems, too.
I tried to pin down what the episodes are like the last time I had one, and this is what I came up with. I don't know how else to describe it:
I feel like I repeatedly lose consciousness for a tiny fraction of a second and when I 'come to' everything has shifted a fraction of an inch. I don't fall down or anything, I can be walking along, though I'll tend to drift.
At the same time this 'shifting' happens, I have short bursts of sound inside my head like the noise a computer monitor makes when you turn it off...like an electrical "sching" sound. A few times I had a really loud one just as I was falling asleep.
I get an increase in nerve pain and tingling, and the ringing in my ears is worse. I also notice that I have jerking of my limbs when I'm close to falling asleep, which I don't have other times.
I generally feel weird the whole time I'm in an episode, need to sleep a lot and find living my life more difficult. The 'shifting' sensation and sound come on on their own, but I can also trigger it by looking out of the corner of my eyes, turning my head, and moving around generally.
The last episode lasted for four days. They can come on partway through a day, or I can wake up with it. Then, one day I'll wake up and it's over.
My LLMD ordered a 'sleep deprived EEG' and said the results show 'abnormalities consistent with inflammation of the brain.' Because I have been sleeping so badly for so long, I also had a sleep study done but don't have results back yet.
LLMD says EEG indicates I need to go back on IV again, but this time wants to first address mercury, parasites, and adrenal imbalance so that it has a better chance of working.
I've already done two rounds of IV (got c. diff colitis this last time) and many orals in the past five years. I'm not sure I have it in me to go back on IV again -- the constant dr. appts., insurance fights, more debt, being sick(er) and missing more work, and just plain having my mediport accessed, not being able to shower, and giving myself the darned things every day. Honestly, I'm just having a hard time keeping up my optimism at this point.
I would really appreciate any feedback you have on the above, including if these 'episodes' sound familiar to anyone and if more IV sounds like a good idea in my situation.
Posted by sometimesdilly (Member # 9982) on :
i had phase 6 months or so again that was a faint echo of what you're describing, and usually confined to late evening or just before bed.
i didn't hear noise; what i experienced was flashes of light, sometimes very intricate patterns of light. intense myoclonic jerks always followed, and often, a whole body sensation i'd be hard put to describe, though for sure it was not painful- more like like a warm glow of light flooding my body.
i do have encephalitis, so i imagine swelling was doing particulalry funky things for that while.
has your llmd suggested any meds to increase bloodflow? i think heparin seems to have helped many here.
good luck- dilly
Posted by sfcharm (Member # 9392) on :
I can absolutely relate to your posts about the electrical shocky noise right before you drift off to sleep. It's like a zinger ZZZZZZZZZZZZ sound in your head just as your trying to sleep.
I have had the limb jerking on and off for two years. My limbs have done things like my hand would turn completely around without me being able to control it.
My myoclonic jerks have gotten so bad at times it's hard to describe them.
I would be laying down at night ready to drift off and my back would arch like a mad cat and lift off the bed and within seconds I'd be thrown back onto my bed.
If I try telling people this they think I'm looking for a spot in the next Excorcist audition.
I took orals for one year and in July I started IV Rocephin. I wish I could say that I notice a big difference but it's only two months this week. I have not had an episode of limb jerks but I have had and almost every night do have the electrical ZZZZZZZZZZZZZZ zap feeling in my head.
I expect to do the IV for six months to a year. I have a groshong catheter in my chest. I take baths and wash my hair in the tub right under the faucet. There is no worry about getting anything wet.
I find it much easier than taking the orals but I felt better on the orals. With the IV I have had diarrhea for the last three weeks and now am on cholestyramine hoping to bind myself a bit.
Not sure this helps, sounds like you could tell me a thing or two.
Hope it does help.
Posted by Michelle M (Member # 7200) on :
I'm so sorry you're not doing better after such a long period of intense treatment.
I can relate somewhat; I have "flashes" of perhaps only a few seconds or so of being somewhere else and seem to lose all awareness of the present. Then I'm back, orienting (more or less) again. I can't imagine having this for days! It's almost like going to sleep really briefly or something. However, there is no sound or increased pain.
If you can't do IV, I would consider a serious course of doxy/flagyl/tini or a similar brain penetrator.
I would consider HBO treatment. Yeah that's expensive, but sometimes has dramatic results.
I don't know your status on babesia treatment but it could be a big player.
I would add to Dilly's post: My LLMD has me take COQ10 regularly and Gingko Biloba -- both are cheap and easy to find and regular use will help with perfusion. Every little bit helps.
Lastly, have you considered somehow taking off work? That is a hard thing to do. However, constantly pushing yourself and not resting can't be helping. Maybe a medical leave, to see whether rest and lowered stress would precipitate healing? Brain injury requires rest, of that there is no doubt.
All the best,
Posted by monkeyshines (Member # 6406) on :
"Lastly, have you considered somehow taking off work? That is a hard thing to do. However, constantly pushing yourself and not resting can't be helping. Maybe a medical leave, to see whether rest and lowered stress would precipitate healing? Brain injury requires rest, of that there is no doubt. "
Michelle, you sound like my mom But seriously, it's something that I struggle with every day. I wish the right thing to do was clear to me. It almost seems like I'm waiting for a sign, but that would pretty much have to be something really bad happening