Trigeminal neuralgia/occipital neuralgia. How did developing extreme pain develop your cfs?

[hmnr asg]

@hmnr asg yes i understand that notion. Glaf you have pain free days. So far its just pretty constant mild and shitty for me. Glad only 2 big flairs. Def effecting my sleep.

Im fucking pissed. Severe cfs now this. In like 6 months. Fuck.

I have CFS since i was 30 (im 40 now), TN and also arthritis in multiple joints (I even had to have hip surgery). I just turned 40 and im falling apart. And before my cfs i used to be super active and super social. Now im just hanging in there, one day at a time.

 

[bensmith]

@hmnr asg my therapist said “youve changed” yesterday, negative connotation. Pissed me off. But yes, i am very similar in my short stint at thisnwar. Healthy and active to just getting by, if even that.

There truly is no other day outside of this one.

Christ this gabapentin is flairing my depression, the pain is pretty bad today, my pem is going. How can life be so shitty.

 

[bensmith]

@hmnr asg @Tammy did developing tn worsen your cfs?

Was agitation a symptom for you? Not sure if med or what but good lord its a thing for me atm.

Also siezures? When im falling asleep my eyes and brain shake. I had myolic jerks before so maybe is that. Weird my eyes shake now. My eye sockets are my worst area.

Starting to feel a lot more flu sick.

 

[raghav]

I had trigeminal neuralgia like symptoms in 1995 which vanished when I corrected my gut motility.

 

[hmnr asg]

@hmnr asg @Tammy did developing tn worsen your cfs?

Was agitation a symptom for you? Not sure if med or what but good lord its a thing for me atm.

Also siezures? When im falling asleep my eyes and brain shake. I had myolic jerks before so maybe is that. Weird my eyes shake now. My eye sockets are my worst area.

Starting to feel a lot more flu sick.

No i didnt have any agitation, just anxiety around the TN. And there was no relationship between the TN and CFS. Except that when i stay too long in bed due to cfs my TN somehow gets worse (maybe because i notice it more, or maybe the neck position causes more pain when im in a laying down position).

Have they ruled MS out for you? MS can cause eye symptoms AND it can cause TN (look up optic neuritis).

 

[bensmith]

@raghav Congrats thoufh that’s impressive. Maybe that can help me i have a bad stomach. Weird !

@hmnr asg i wish it was ms, but i have severe pem esp mentally. At this rate i should just assume i have ms and cfs lol.

Yea me too! Getting out of bed helps. I wish i didn’t need to be in bed.

I think the agitation is the gavapentin, but jeezus i am really keyed up man. Like near manic and agitated as fuck. Not like me. I have been manic a bit here and there befoe ebut not often. Super annoint needint tk relax lol.

Glad to hear it didnt effect it too much at least! Maybe changing some a bit for me. Not too bad yet if it has.

 

[hmnr asg]

@raghav
I think the agitation is the gavapentin, but jeezus i am really keyed up man. Like near manic and agitated as fuck. Not like me. I have been manic a bit here and there befoe ebut not often. Super annoint needint tk relax lol.

Glad to hear it didnt effect it too much at least! Maybe changing some a bit for me. Not too bad yet if it has.

When did you start gabapentin? This is a rare side effect from what I remember, but gabapentin made me extremely agitated and angry. Everyone around me was asking me if i was ok. I stopped gabapentin and changed to lyrica and that was somewhat better for me.

 

[bensmith]

Ok ill try my dads lyrica. This shit has me heated . I’m not aggressive but hot damn.

Also really suicidal.

Only took some one tike a couple days ago.

 

[hmnr asg]

Ok ill try my dads lyrica. This shit has me heated . I’m not aggressive but hot damn.

Also really suicidal.

Only took some one tike a couple days ago.

Please talk to your doctor, these meds are pretty serious and you have to be careful. Mix it with the wrong med and you can be in a heap of trouble.

 

[bensmith]

For sure. Pain in the ass. So fucking sgited lol. Like im about to explode. Plus pem and pain and sll thisnshri insaear to god lol.

Hard to tell even what is happening now.

One last wuestiont did it effect your sleep.

 

[Sophiedw]

but i have severe pem esp mentally. At this rate i should just assume i have ms and cfs lol.

Hey Ben, have you ever tried BCAAs (branched chained amino acids) for PEM? There's a thread on here somewhere of them curing a members PEM and they greatly improved my hypnic jerks and seizures. Worth a shot if you are into trying supplements as don't think they interfere too much with other metabolic processes. As always start with a very small amount tho and build up over days to check if you're going to react poorly. It's easy to get impatient x

 

[bensmith]

@Sophiedw they give me hallucinations(mostly dp/dr). Thanks for the suggestion anyhow!

 

[Hoosierfans]

Hey Ben, have you ever tried BCAAs (branched chained amino acids) for PEM? There's a thread on here somewhere of them curing a members PEM and they greatly improved my hypnic jerks and seizures. Worth a shot if you are into trying supplements as don't think they interfere too much with other metabolic processes. As always start with a very small amount tho and build up over days to check if you're going to react poorly. It's easy to get impatient x

@Sophiedw BCAAS helped your seizures??!! At what dosage? I’ve never heard of them being used for nervous system issues like seizures etc so that is really intriguing!

 

[panckage]

I developed migraines and (tmj or TN/ON) headaches after a dental treatment that ruined my bite. I will refrain from commenting about the care I received.... But!

I wonder if it could be a similar cause for you. That is, a structural change occurring. Probably not dental in your case but if you became bedbound and/or deconditioned maybe that lead to a change in structure that put pressure on the TN nerves