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

[bensmith]

So far my cfs is only very severe mental limitations and severe physical limitations. Thankfully i can still talk etc.

Unfortunately i am developing tn/on which was been described as the worst pain known to medicine. I figured many of you also have extreme pain, so i wanted to ask if this worsened your cfs? As your not able rest any longer?

Frustrating as i was kind of getting a bit better i think, and the tools they use to manage the disease would not be open to me(distraction, standing, surgery.)

 

[Pyrrhus]

I assume that "TN" stands for trigeminal neuralgia, and "ON" stands for "optic neuralgia"?

If so, you may want to edit the thread title to make that clear...

Both of those suck big time!

 

[bensmith]

@Pyrrhus done.

Ikr! I was finally maybe seeing some improvement after 4 months or 5 months from ldn.

I felt so fortunate to not have pain, so its a blow. I fear itll zap all my energy not sleeping and dealing with pain. Esp with what these people on the forums are talking about it sounds terrible! One lady said its worse than child birth! Mine seems to be both type one and two.

They have surgery but i wonder if mine isnt viral. Plus not sure if severe people can do surgery?

Cant make food cant imagine surgery lol.

 

[xebex]

Oh man one thing after the other! One thought, Are you titrating your LDN? You may have missed your sweet spot and find that if you go back down to the last dosage you were in before this pain it will get better. Of course it might be nothing to do with the LDN but may be worth a try.

 

[bensmith]

Ldn seems to be making me a bit better. Even so as i titrate. Think thats still good.

@xebex Ikr! I mean what the absolute fuck lol. I am sort of in shock. They say its the worst pain known to man. It sounds really scary hearing these people talk about it. But ironically my main fear still cfs! Im aftaid itll veggie me and kill me honestly. That level of pain i mean i cant imagine with severe cfs.

I guess you can still take opiates even on ldn so hopefullu that jelp but i hate opiates theybmake me crqzy! I took some gabapentin but it made me drowsy a bit. Im blocked from many other nerv drugs because of my hppd(tripping disorder.)
Most people seem to say anythint short of surgery is pretty terrible.

Just have to wait and see but im very anxious. I was hoping somehody else that is or was severe could let me know how severe pain effected their cfs. I am already in mild pain and its notntjer bad but its pretty frustratint.

Could cfs just mimic all the same sympotoms?

 

[xebex]

I don’t suffer severe pain but I am in constant chronic pain daily and I do believe the pain triggers my nervous system into crashing, but I dont get PEM from it, (I get PEM from over exertion) but my brain just shuts down and I have what I call a sleep attack, these can last for 7 hours where I lie in bed feeling semi comatose unable to actually sleep but unable to wake up either.

 

[hmnr asg]

I also have TN. I have the classic shocks and the TN type 2. It started out of nowhere in 2015 when I was five years into my CFS.
Please dont read the forums. I stopped reading them because it was very depressing, lots of suicides and people who were at the ends of their wits. At least with CFS you can just chill and stay in bed until they figure out a cure, but with TN every moment can be pure hell.
I am lucky that the shocks have stopped now after taling lyrica. But I deal with the constant dull pain which would be a 10/10 pain for most people who havent experienced the shocks (the shocks are 100/10).

You might have TN2 and not TN1 if you dont have shocks. Anyways if you really have TN you should be on some kind of medication. The doctor put me on cymbalta and lyrica for TN. If you start experiencing the shocks then you should take the gold standard treatment which is carbamazepine (or one of its close cousins).

Anyways, you are catastrophizing now. Stop reading the forums at the moment. Your pain might not get worse, or it might go away on its own. TN pain can range from mild to ... well, you know, you read the forums.

 

[bensmith]

@xebex so sorry mate that sounds crappy! I have experienced something similar but bot from pain. Hope you find something or itnchills our, ive never really had too much pain before. Glad of it lol

@hmnr asg i cant believe im saying this but yes i know wjsr you mean exaxtly. Ar leart with cfs( and im severe for christ sakes) you can as you say just kind of wait for something better. With this...im truly in shock. I cant believe there is anotjer person with it on here. Is yours nerv pressing on the thing or something else? Do you have other pain? I have other pain im praying it just seems similar. But inhave all the classic signs.

sadly incant take that : (. Thats why im so afraid kind of. At least its unlikely. I have hppd and from thebforums its a no no drug. Increases disassociation. I need that one too because i think inhave both t1/2! The fucking luck of life man : (

Have no idea if this is related but my tn seemed to have started as ive come out of a nearlyb6 month crash.

I know exaxtly wjat uou mean about normal 10/10 etc. i think i hace fucking both!!! Argh! Ive had two “im going tomfucking die” moements. And a constant “mild” pain lately. The im going tondie moments are prob mild too lol. Like from others describe. I was actuallybscreaming like a dog. Neger done thst before with pain.

Maybe its jot that i hope but inhave all thrnsymptoms and it matches perfectly : (. Like perfectly. Pretty terrified.

I need to keep the forums going until i at least figure out all the stuff. Like ldn usage etc. why would people kill themsevles with the surgery it seems to work. Thats sad. I am freaking you are right. But dude come thebfucnon. Lol. And what the hell am i going to do if it gets bad like these peiole say.

I took some gabapentin and that shit is a pretty gnarly drug imop. Mania a bit, suicide issues. Some good too of course which isngood but kinda yucky.

Im just worried af about everything rigjt now. Like the sexond i feel a bit better after foghting for lontjs to get here and its lime of yeah check thisnout lol. I mean in in shock bro. Can we wven have surgery for thisnwith cfs?

 

[Tammy]

Yes..........I had TN and ON although I didn't know it at the time. I thought I had some serious tooth infections and I begged my Dentist to pull some of my teeth because the pain was so bad. After pulling a couple of teeth at different times my Dentist told me he would not be pulling anymore no matter how much I begged because the teeth that he did pull did not look bad at all. It was then that he mentioned that I may have TN. This pain eventually went away. (Thank God). This type of nerve pain is horrid. It also affected one of my ears.

It is my opinion now that it was internal shingles and that TN is a result of that. Of course you can't see a rash with internal shingles but shingles causes some of the worst nerve pain ever.

 

[bensmith]

@Tammy very sorry my friend! Inhave heard ofmthese kinds of stories. Im sonhappy it went away dormyou! Fingers crossed mine doesnt get as bad fornmanybpeople. Its scaring me crazy!

 

[Pyrrhus]

Most people seem to say anythint short of surgery is pretty terrible.

My sister-in-law had the surgery for TN. It relieved the pain for a couple months, and then the pain returned. Surgery is actually a temporary fix.

I guess you can still take opiates

My sister-in-law took opiates for her TN. At first it helped, then the pain became worse and she ended up addicted to opiates. When she finally quit the opiates, her pain became much less than when she was on the opiates.

I still don't understand why people with trigeminal neuralgia don't try Valtrex. It is well known that both Herpes Simplex Virus (HSV) and Varicella Zoster Virus (VZV) hide out in the trigeminal ganglion, where the pain signals are processed...

 

[bensmith]

@Pyrrhus seems to vary, sorry to hear hers was temporary and thst she has this terrible disease!

@i meant take opites with ldn. People on forum said you get pain relief without euphoria. So not mentally addicted at least. That sucks it became worse i could see it.

Somebody on reddit said there doctor thinks it was that! They took it for a year and half and it worked for some time! Im going to start on valtrex with levine i think because of this info.

 

[Pyrrhus]

So not mentally addicted at least. That sucks it became worse i could see it.

Mental addiction is not the problem with opiates- it's the physical addiction that reduces your pain threshold, that's the real problem...

 

[hmnr asg]

@Pyrrhus there could be many causes for TN: MS, vascular compression, a virus as you suggested, any other factor causing demyelination of nerves or even tumors. So trialing valtrex is probably worth it (I did a course of famvir with no luck in terms of TN pain).
Also there are many procedures for alleviating TN pain, one of them is MVD (Microvascular decompression) which I believe is what your sister-in-law had. The outcomes are highly variable and can range from zero benefits to many years of remission in the pain. I wouldn't call it temporary but you are right that the outcomes are highly variable. Some people easily get upwards of 10 years of pain relief. It has a lot to do with how complicated is the anatomy of the nerve compression and how skilled is the surgeon.

@bensmith I highly recommend this book, it's the definitive guide to TN:

https://smile.amazon.com/Striking-Back-laymans-Guide-Facial/dp/1094722448/

 

[Pyrrhus]

So trialing valtrex is probably worth it (I did a course of famvir with no luck in terms of TN pain).

Thanks for sharing that! I have often wondered about that.

Also there are many procedures for alleviating TN pain, one of them is MVD (Microvascular decompression) which I believe is what your sister-in-law had.

I believe she had the nerve ablation procedure, where they cut the nerve to prevent transmission of pain signals. But the nerves grow back eventually.

I wouldn't call it temporary but you are right that the outcomes are highly variable. Some people easily get upwards of 10 years of pain relief.

That is great to know! (Assuming one is a candidate for the Microvascular Decompression procedure.)

 

[bensmith]

@Pyrrhus mental addiction is a huge problem with opiates. But yes physical addiction/tolerance in thisncontext would be a huge problem too!

@hmnr asg ty. I wonder if i domt have demylination. When inhad post covid incoildnt waln for some time. But if started walking correctly again, prob not that? Not sure.

I wish i had kratom to use, that gave me great nerv relief. Turned my hands and feet blue though and messed with circulation.

 

[hmnr asg]

That is great to know! (Assuming one is a candidate for the Microvascular Decompression procedure.)

Exactly that is the problem. In my case my skull-base MRI showed a clear compression, so I would be a candidate for surgery. But if they dont see a clear compression most surgeons are not willing to open someone up (even if there is compression which is not seen on the MRI).

 

[bensmith]

@hmnr asg does diet play a role for you? My two shocks were when i was eating peanut butter of all things.

You thinking of surgery then?

 

[hmnr asg]

@hmnr asg does diet play a role for you? My two shocks were when i was eating peanut butter of all things.

You thinking of surgery then?

So far im putting up with the pain. I had an appointment with the neural surgeon and he told me to come back when the medication isnt controlling the pain anymore. Im not in a rush to have brain surgery though.
There are days when i dont even feel the pain, some times when its unbearable. I guess i will have to have the surgery at some point

 

[bensmith]

@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.