Worst isn't over, after all. Damn.

[[sl...]]

I'm close to 14 months off.  What a horrible trip this continues to be.  I really thought that this time the very worst was over.  I spent the last 5 weeks with better nightly symptoms.  Sure, the burning and heart issues haven't decreased, but my sleep issues went from terrifying to a tolerable version of BAD.  I barely cried.  I was out enjoying time with family.  I was making plans for my future!  Something I had not done in over a year. 

 

Things are slipping downhill again with last night being the worst in many weeks.  Constant electric jolts making my heart race and absolutely terrible nausea from it.  I woke after an hour of sleep and my eyes had severe flashing lights and other disturbances.  It was giving me the illusion that the chair in the room was a person inching towards me.  Sounds nuts, I know.  I was also having severe itching skin- never had that before!  Everywhere!  My right eye has been twitching nonstop for a week now And my brain is on fire.  So fatigued.  Why me?!! Why any of us?! 

 

I just needed to vent.  I'm not even sure what to ask anymore.  Seems that every question has been answered; yet, I'm still reaching out for... I don't know what.  Maybe someone can point me in the direction of the oasis.  My camel is dead and I've got about 2 drops left in the canteen.

[[Ia...]]

It should go quick.... youve been off for a while so I imagine a quick wave..... atleast you know what your body is capable of in healing.  Good days your way!

[[Be...]]

Buddy

 

I have flashing lights too. But they are a lot less.

 

You need more time. It will get better and better with time, time, and more time

 

 

[[sl...]]

I hope so benzo.  Its easy to believe TIME will heal when symptoms are manageable.  When in crisis mode, I just want to jump out of myself no matter what might heal me.

 

Oddly, the flashing lights are worse than they ever were.  This symptom isn't a problem though (except when it makes chairs look like people and I freak out!).  I would just like to understand all of these symptoms.  Are the flashing lights some sort of seizure?

 

How is sleep going for you?

[[Fl...]]

Hello everyone. Have not been on here for a few weeks as I have been feeling better. From June through middle of September I was dealing with random stabbing pains and my heart would race and felt extreme terror. I had insomnia and was feeling like driving myself to the hospital daily. Now at around 14 months, my al over body pain is intensifying while everything else i mentioned has gone away, minus a little insomnia from time to time. The a heat muscles and stabbing pains, with twitching all over is mostly new, did not have it in acute. Can only assume it is my body adjusting to not being on a powerful muscle relaxer. My waves are shorter lived than ever. Still not healed though I am healing, we all are. I think what gets us the most this far out is having felt somewhat healed and then go have a wave open on us knowing what it was like to have some peace back just to again be dealing with symptoms.

[[Si...]]

Hi sMT!

 

I was very very up and down near the end. It happened to me a few times where I would feel better for a month or two and then get hit again. Everything just finally cleared up really fast between months 18 and 19. I still have a few minor waves here and there and occasionally get some minor stuff, but nothing at all like it was. I'm now approaching the 30 month mark. My guess, from my experience, is that a lot of up and down may be a good sign you are nearing the end. It's almost tougher though when you have a glimpse of feeling better for a short while. That gives you a chance to compare. I do hope the next 3 or 4 months is a big leap forward for you.

[[Bh...]]

I'm having the same experience at 11 months. I feel decent for a week and then I'm completely off. My itching came back too. I'm not even eating high-histamine foods. It doesn't make any sense.

 

I still have the silly one good, one bad day cycle.  My bad days aren't as horrible anymore.  They are dictated by early awakenings in the morning...more erratic sleep. Then I'm just really tired the next day....cog fog is worse. My good days are pretty awesome...still have too much glutamate on these days though. The funny part about this is that I get the same amount of sleep almost every night...my awakenings are what differ.

 

I don't understand how your brain can get the neurotransmitters right one day, and not the next. It's very frustrating.

 

You will get better soon.  You are closer than I am.  Hang in there!!! 

[[si...]]

Sleepless, we jumped on the same day almost 14 months ago. I am also at a loss for words about this experience. Maybe the ups and downs are a good sign. At least it is better than where we started.

Give it time and pray for the end.

 

[[sl...]]

Hey siggy,

 

Thanks buddy, I appreciate having you around here to knock some hope back into me.  My fingers and toes are crossed that this is an up and down swing in things towards normalcy.  I hope the last bits of your wd are fading away. 

 

Florida and silver,

 

Hop in next to me for this stretch of the ride.  I hear the roller coaster does a few loops and sidewinders this far out.  Hopefully if we puke our guts out, we can laugh about it at the end.

 

Bhealthy,

 

Looks like you graduated to the kiddy-ride.  At 11 months, you are doing great!