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Posted 2/22/2013 10:47 PM (GMT 0)
Hello fellow pain sufferers,

I have a neuralgia-type pain in my face and have recently been having rather concerning, often quite intense muscle spasms while a jolt of pain shoots up my face. It is the sinus/trigeminal area of the face.

I've had small signs of this here and there over the past few months but this aspect has got a lot worse lately. They just won't stop today, every 15-20 minutes for hours now there are a few spasms and pain flashes. Just taken 900mg of Gabapentin, higher than my normal 600mg dose, which I hope will calm it down.

Should I be concerned about this?

Its certainly indicative of 'Trigeminal Neuralgia' which is what I suspect my face pain is.

Am hoping to see a neurologist again and get an MRI soon, it is really starting to worry me.

Post Edited (holydiver) : 2/22/2013 3:50:45 PM (GMT-7)

Posted 2/22/2013 11:03 PM (GMT 0)
Hi there...

Sorry to hear you are still having issues with the neuralgia...

I would think that they could prescribe an actual muscle relaxer to help and take as needed. I think you are not in the US but the ones available here that you can ask about and see if you all have is Flexeril, Robaxin, Skelaxin, Baclofen, or Zanaflex. I rotate through 3 of these every few years and just like your nerve pain med (Gaba), these meds are specific to muscle spasms so it's good to have a med that targets a specfic symptom.

Just be careful with the Gabapentin as I think you are on the max dosage for the day which is 3600mg already, correct? (I think I read that on a previous post)..So just make sure your Dr. knows if you are raising the dosage.

I hope that you can get in to see the Neurologist soon...Can you contact them after hours and will they call in a medication for you? This is what you can try and see if they will do this for a muscle relaxer...

Keep us posted..
Posted 2/22/2013 11:12 PM (GMT 0)
Thanks for the idea, I will mention a muscle relaxer to the doctor next time I see them. Haven't got the neurologist on call sadly, only saw him once and the pain was much less severe then so it was assumed it would go away with time. Its just getting worse though, despite ever higher doses of meds, so am asking for a referral again this week.

Am on 1800mg/day of Gabapentin (600 3x daily) at the moment, my first post is a bit ambiguous hah, I just took 900mg this evening instead of 600mg since it is very bad tonight. Can feel it kicking in now and calming it down a bit, may consider trying this dose all day.

Kind of concerned this pain will never go away.
Posted 2/22/2013 11:44 PM (GMT 0)
Ahh..thanks for sharing more..I must have been reading too quickly and it was someone else's post about the max dosage for Gabapentin. So you do have room to go up on that one if it helps.

That is too bad about not having a Dr. to call. Do you not even have a regular primary type Dr. who oversees your entire care?

It is really hard when we have health issues that are not easily "fixed" like a broken bone....This is why some years into my surgeries and such, I went ahead and stayed on an extra 6 months with the counselor I was seeing for my divorce. I needed to work out all the anger, sadness, frustration, and all the varied emotions that come from living with chronic pain.

I still have my "moments" when I let myself have a pity party....and then I go back to trying and using my faith to see what is my "new" purpose in life. It definitely takes some mental adjustments...

I will still hope and pray they can find out what is going on with you and treat it!!!
Posted 2/22/2013 11:45 PM (GMT 0)
I have muscle spasms due to having my TMJs replaced. In addition to meds, my dr does Botox injections as well. I just got 3 down each side last week. I'm always going to have spasms, but the injections help make them manageable. Trigeminal nerve blocks have also been helpful.
Posted 2/23/2013 12:39 AM (GMT 0)
I am on the max dosage for Gaba (1200mg 3x day) and it helps a little but I have had injections done and they seem to help for a little while at least.
Posted 2/23/2013 12:55 AM (GMT 0)
I do think Holydiver that you should try to see a neurologist, or at least some type of doctor about your problem with spasms. There are allot of things that could be causing this, but you definitely  need to get it checked out!

I have had problems with muscle spasms for quite awhile now, I get them every where, hands, feet, neck, back and legs both thighs and calfs, they were terrible, the muscle would actually knot up, and it hurt so bad. I had tried many different typse of anti spasmodics, it wasn't till I got put on Baclofen that I finally got relief, and it was slow going at that, as my PM doctor had to slowly increase the dosage till it finally became effective. I take 30 mg every 8 hours. and for the most part have had very good luck with it!

I hope you get to see Doctor soon about your spasms, it really is something that you should not ignore or let go to long. Good Luck to You!

White Beard

Posted 2/23/2013 2:38 AM (GMT 0)
WB,

I get the bad spasms pretty much everywhere too, I'm one big knot 24/7. In my case my body's natural state is spastic so when I get the spasms its like knots on top of knots and then nerves get overactive. Its such a hard pain to deal with...its so many painful sensations it feels like pain overload, especially if more than one part of the body is spasming at once. At least its good to know DD and I arent alone!
---

My best recommendation would be like the rest, get a good muscle relaxer, also, heat may help. No matter how much pain/other medication you take, you'll hurt through it if you dont calm the spasms.
Posted 2/23/2013 3:22 AM (GMT 0)
I also have dry needling done twice a week.
Posted 2/23/2013 8:02 AM (GMT 0)
LexiRae
It is miserable getting those muscle knotting spasms, or Charley horses, especially when you get them in your legs in the middle of the night and they wake you up from a sound sleep! I just wish I knew what caused them! Some doctors think it is from my back, others have said they think I might have MS. At least my PM doc is willing to treat them!

White Beard
Posted 2/23/2013 2:46 PM (GMT 0)
I also get twitches on my other muscles sometimes, on the side of the face, legs, arms etc. Its only minor and occasional and I never thought much of it before. Just hope I don't have some kind of neurological problem underneath, never had a brain scan or anything.

Good to know other people get this, probably nothing to worry about bit still very disconcerting.

Muscle relaxant sounds like a good idea definitely.



update:
900mg Gabapentin successfully calmed things down well last night and the violent twitches/spasms did stop. Made me high as a kite though so I'm unsure about this dose during the day. Taking my normal 600mg throughout today and its not really helping a great deal. Doctor appointment next week for sure.

Post Edited (holydiver) : 2/23/2013 11:20:49 AM (GMT-7)

Posted 2/24/2013 2:08 AM (GMT 0)
At least in my case I know whats causing them!

I just wish it were fixable :(

I'm starting to get them really bad in my feet too now. My back and legs I'm used to (as used to as one can be anyway) but getting them in my feet is newer and harder to deal with!
Posted 2/24/2013 7:47 AM (GMT 0)
I hate getting them in my feet, my toes curl under an it is extremely painful! It is like the arch of your foot just clamps down in its self! I used to get them in my feet allot! Actually for me I think the least painful place to have them is in my hands, I mean it is very uncomfortable, but I get them in the muscle along the outside of my hand going from my little finger toward the wrist. That muscle will tighten up and it makes my hand look distorted. Not comfortable but not near as painfull as it is when I get them in my foot or legs and other places in my body. The Baclofen has really been a Godsend for me! I do hope that they can give you something that will get your spasms under control.

White Beard
Posted 2/24/2013 9:34 PM (GMT 0)
Thanks for the replies guys, good to know I'm not alone!

Still having thuis through my face, its become a common feature now. Just now in fact, the pain starts at the bottom of my cheeks, then kind of flows up the sinus area to the forehead, while the muscles there shake and twitch. It really is unbelievable painful, even with all the meds I'm on which make me into a zombie. I drink so much coffee all day just to be able to function.

Somehow I'm managing to work a mentally intensive job where I have to think on my feet all day, but the pain is getting worse all the time so no idea how long I can continue like this :(

Anyone have any idea what is causing this and what I can do about it? Due to it progressively getting worse, even as I increase the meds to cover it up, I am really worried there is a serious underlying problem.
Posted 2/25/2013 12:11 AM (GMT 0)
You need a muscle relaxer ASAP. You can take as much pain medication as you want but without a muscle relaxer in the mix you really wont get much relief from them.

A lot of people don't realize just how incredibly painful muscle spasms can be unless they've experienced them or know someone who has.

Does applying heat help? Sometimes that can help relax the muscles a bit.

Stress can make them worse, also, some medications can cause stiff muscles and or muscle spasms.
Posted 2/25/2013 8:39 AM (GMT 0)
Whenever a muscle gets overstretched or torn. Generally people suffer from lower back pain due to muscle spasm. This pain is caused due to the lifting of any heavy objects. If the pain persists for more days then the muscle becomes weak and it starts hurting. Don’t worry I think everything is gonna be fine. Do you experience any side effects?
Posted 2/25/2013 8:36 PM (GMT 0)
Muscle relaxer sounds good, going to get to the doctor this week hopefully. But then its a referral which will take months for an appointment sadly, so will have to tough it out a while longer.

Heat is a good idea too. The spasms come out of nowhere though, can be none for a whole day then suddenly in the evening it starts.

Angelina - what do you mean by side effects? From the medication yes, but they are tolerable.
Posted 2/25/2013 9:12 PM (GMT 0)
You should be able to get a muscle relaxer from your regular doc. They're non narcotic and don't require a speclaist or anything, so you shouldnt need a referral to get one.

A heating pack would work well for that, just have it handy for when they start.
Posted 2/27/2013 6:43 AM (GMT 0)
holydiver it probably would be a good idea to get a referral to a neurologist, and get checked out, to see if the neurologist can find a cause for the spasms. Your PCP can give you the antispasmodic there are a host of different ones available, some work well for one person and not so well on another, but your doctor can at least try you on one to see if it will work. I wish you well on getting them under control. I know even with being on the baclofen, every once in a while I will have problems with the spasm, just as if I wasn't on anything, and then they will go away. But is is allot better since I was put on the baclofen. Good Luck to you and keep us posted on your progress.

White Beard
Posted 3/2/2013 10:19 PM (GMT 0)
you are right White Beard, I've finally made a doctors appointment for this Thursday, so will be asking (deminading?) for a referral to the Neurologist. Appointment will be months away but hopefully I can stress some urgency and they can get one a bit quicker.

Baclofen sounds like a great idea, will be making sure I get a prescription for that

Today it was REALLY bad, was wandering outside for a while and was in a mad trance-like state of mind trying to focus away from it. Took 900mg Gabapentin about an hour ago after I got home and can feel it kicking in so am preparing to be a dribbling mess soon but at least I know it will calm down. Really, really sick of being so high on all these drugs constantly
Posted 3/2/2013 10:27 PM (GMT 0)
Talk to your PCP about the muscle relaxer.

He/She should be able to script you one.

That way you don't have to wait until you get in to see the Neurologist for some relief.

Hopefully you get some relief soon :)
Posted 3/3/2013 8:31 PM (GMT 0)
Thanks LexiRae.

Pain is unreal lately, I've had a bad sinus infection the past few weeks and its somehow made it even worse. The drugs aren't working any more and I'm not sure how much longer I can live like this...

Thanks for all your suggestions people, am going to the doctor on Thursday and am going make sure they order every scan possible of my brain and face to find the cause of this
Posted 3/3/2013 10:03 PM (GMT 0)
I would make a list of everything you want accomplished during this visit so that you dont forget anything and you can make the most out of the time with the doc.

I know sometimes I have things I want to talk about going in and then in the moment I forget and I remember when I get home that I didnt get ALL my answers.
Posted 3/5/2013 9:55 PM (GMT 0)
I've already made a list complete with bullet points hah thanks.

Upped the meds a bit and things are slightly better. Forgot to take my lunchtime dose of Gabapentin though and around 5pm the pain and spasms were insane again. Really hope I can find a cause that can be fixed, so I'm not on these meds the rest of my life.
Posted 3/10/2013 5:42 PM (GMT 0)
update: Went to the doctor which wasn't a great deal of use, didn't seem concerned at all with the muscle spasms. Asked if I was stressed at work??? No I'm stressed due to never ending severe pain. My job is the only thing keeping me from suicidal depression.

I originally stated at the start of the appointment that it had got worse since the recent chronic sinus infection, so she wants me to see an ENT specialist about that first. I said about referring me to neurologist as well but she didn't want to. Kind of got the feeling she thought I was making it up or over playing how bad it was.

Maybe I should self-refer myself to a private one if this is possible. Would be expensive but can't live like this any more, the facial twitching and shaking when the pain is bad is too much. 900mg Gabapentin just about takes the edge off!

Phew, really annoyed with how crap doctors are :(
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