Symptoms Ramp before sleep? Wondering if anyone could relate.

[[st...]]

I have might talked about this a couple months ago, but it's still very intense and scary when it arises. Haven't took a benzo since last September and have now tapered down to 100mg a day of Gabapentin the last month. 

There will be these "Storms" that come over my body and brain, but they generally happen more often when I am tired and about to sleep. Sometimes a hypnic jerk will trigger these storms, but I don't even like calling them hypnic jerks because it doesn't fully describe the terror and pain that fills my body when I am "Zapped" back awake. been going on for so long... Usually I'll have to get up and walk around my neighborhood out of fear, or just take deep breaths and try to accept the pain and fight through these storms. 

Just got back MRI results today... nothing abnormal. Which is a relief in a sense but the part that sucks is that there's not really a way to treat me. every doctor I talk to wants to put me on a SSRI or antipsychotic. Alot of these specialist still look at me like im crazy, I'm learning to forgive people when they don't understand. They simply just do not know the extent of some people's suffering. 

- main symptoms is profound fatigue, brain fog. cant play guitar or write songs anymore really.

- intense burning in scalp, pulling, stabbing pain. 

-strange tension in my spinal chord and jaw? thats best I can do to describe that.

- always feeling "hungover" even though I'm months off alcohol now.

- cold "ice cube" nerve pain that shoots indiscriminately throughout my body. feels like when you accidentally burn yourself but it feels "cold" for a second.

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there are endless more, but thats besides the point, just wondering if anyone can relate. because I feel alone in my suffering atleast with my surroundings. 

internet seems to be my only solace and discussing unfortunate set of circumstances. thanks. 

 

edit: I do want to mention I have experienced windows. About for a hour last monday I left the radiology appointment and drove around my town. The sun was out and I could feel spring coming. Took a warm shower and honestly I had thoughts that everything was going to be ok. I felt like I could enjoy playing guitar again or going out. Even though it turned back to shit real quick, Im holding on to it and believing that healing is happening.

 

 

Edited February 29 by [st...]

[[Bu...]]

Hello @[st...],

I really can relate.  My symptoms are almost always worse in the evening and when I lie down to sleep.  My air hunger is awful then.  It's hard to relax and sleep when you are dizzy and  gasping for breath.  And then sometimes, just when I am on the verge of falling asleep, I get a zap and full body jerk.  And then follows some minutes of panic.  I think it's pure adrenaline from the jerk.  Then there is much deep breathing to calm myself or getting up and walking around the apartment or going to the living room to try sleeping on the couch. 

And, no, most people just cannot understand.  Learning to forgive is, I think, a noble and useful skill to come out of all this, though.

I have been off since the end of last August, so we are in a similar time frame.  I had so wished to be one of those that was better at 6 months, but I do have windows too.  I think you're right about holding on to those as proof that we are healing.

[[ns...]]

StarmansuperBB

Hi, sorry your going thru this. 

I was on Gabapentin for yrs for trigeminal neuralgia and sciatica. Gabapentin gave me hyponatremia. This causes an electrolyte imbalance. You should have your sodium checked. 

When my sodium Is low, I have what I would describe as anxiety symptoms, tingling, stinging, muscle spasms, weaknesses, brain fog, fatigue and insomnia if that makes sense, So tired but can't sleep but anxious. Gabapentin is famous for easing nerve pain but when tapering, nerve pain was my experience along with the above mentioned symptoms. 

Once I was finished tapering Gabapentin the symptoms subsided. So hopefully when your finished with the Gabapentin you'll lose most of these symptoms. 

If your in benzo withdrawal from last September's your symptoms could be from that. 

Tapering Gabapentin should be a slow but steady taper. Stepping down from 300 to 200 to 100 and so on. We broke the capsules open and dumped half out for 50mg and 25. 

Take it slow if your going completely off, the last 100 is a little more difficult. 

I had no problem in yrs past going off of it but used it for benzo withdrawal 2 yrs ago for a short time and had to do the slow taper, it wasn't pleasant. 

Every doctor today In my experience wants me on ssri also, it's just they're answer to everything it seems. An er doc said to my husband "why isn't she on an ssri"? Because he told him I was a little sad lately because I missed my grandchildren!

I do forgive them, they just don't understand unless they've been thru it.

I hope your symptoms subside soon, try to change your focus, don't get hyper focused on symptoms because they will dig in and get stronger. 

It's tough I know, I'm one to talk right now, bit I do find it helps to focus in something else and use every opportunity to get out and do some exposure therapy at a store or other public place to keep me balanced, even though it's really hard to do, I still push thru it.

I hope this helps, please be compassionate with yourself. Remind yourself that you are safe, uncomfortable but your ok. You are retraining your brain!

Ok,

Take care

Ns

 

 

[[PE...]]

"always feeling "hungover" even though I'm months off alcohol now."

 

Same here. Worst in the mornings

[[st...]]

23 hours ago, [[n...] said:

StarmansuperBB

Hi, sorry your going thru this. 

I was on Gabapentin for yrs for trigeminal neuralgia and sciatica. Gabapentin gave me hyponatremia. This causes an electrolyte imbalance. You should have your sodium checked. 

When my sodium Is low, I have what I would describe as anxiety symptoms, tingling, stinging, muscle spasms, weaknesses, brain fog, fatigue and insomnia if that makes sense, So tired but can't sleep but anxious. Gabapentin is famous for easing nerve pain but when tapering, nerve pain was my experience along with the above mentioned symptoms. 

Once I was finished tapering Gabapentin the symptoms subsided. So hopefully when your finished with the Gabapentin you'll lose most of these symptoms. 

If your in benzo withdrawal from last September's your symptoms could be from that. 

Tapering Gabapentin should be a slow but steady taper. Stepping down from 300 to 200 to 100 and so on. We broke the capsules open and dumped half out for 50mg and 25. 

Take it slow if your going completely off, the last 100 is a little more difficult. 

I had no problem in yrs past going off of it but used it for benzo withdrawal 2 yrs ago for a short time and had to do the slow taper, it wasn't pleasant. 

Every doctor today In my experience wants me on ssri also, it's just they're answer to everything it seems. An er doc said to my husband "why isn't she on an ssri"? Because he told him I was a little sad lately because I missed my grandchildren!

I do forgive them, they just don't understand unless they've been thru it.

I hope your symptoms subside soon, try to change your focus, don't get hyper focused on symptoms because they will dig in and get stronger. 

It's tough I know, I'm one to talk right now, bit I do find it helps to focus in something else and use every opportunity to get out and do some exposure therapy at a store or other public place to keep me balanced, even though it's really hard to do, I still push thru it.

I hope this helps, please be compassionate with yourself. Remind yourself that you are safe, uncomfortable but your ok. You are retraining your brain!

Ok,

Take care

Ns

Thank you so much Nsindy . A lot of your advice here is very valuable to me. I will take that into consideration when tapering off the gabapentin. I am sorry you’re suffering too . We will get through this. Anyone who is fighting this awful condition has my deepest respect and admiration. Take care 

Edited March 2 by [st...]

[[Re...]]

Yep, I relate. I get worse before bed too it seems. Some people get worse in the day. Everyone is different. Not uncommon.