Lots of Pain even with Gabapentin, the pain is worse!

[Rena705]

Hi guys. I know that posting on the weekend is a touch and go thing but I have a couple things that are really scaring me.

I am on 900mg/day Tegretol and I am on 900mg/day of Gabapentin as of yesterday.  I titrated up to this dose in about two weeks at 300mg increments with the final addition of 300mg in the a.m. yesterday.

Felt really foggy and just not right yesterday during the day.  I have been getting the odd terrible pain in my right temple but last night was literally he** and if it's really He** I don't want to go there!!!

I get this pain in my right temple that is like a railroad spike being pounded into my temple and it is excrutiatingly painful like PAIN I HAVE NEVER FELT BEFORE!!!  There is no warning.  There may be a trigger in that when I play with my hair it will strike.  The left side of my scalp above my left temple...it's the weirdest thing...it's like my hair hurts.  When I move the hair my scalp is incredibly painful.  I just had hubby look at my scalp and he said it's not red or anything but it's been painful since yesterday.

I have dealt with that icepick pain from my TN for a long time now but this seems different in that it's the opposite side of the droopy eye and it seriously feels like someone pounds a railroad spike into my head and it lasts for about 30 seconds to a minute until it subsides.  Hubby timed these painful episodes last night and it was happening every 20 minuts or so but so far today I am alright (knock on wood).  

I can't really see the Gabapentin being the cause and if it is the cure is worse than the illness.  It is supposed to stop the ice pick attacks, not causing railroad spike attacks!

This is probably really hard to understand cause I am really not feeling myself and am having a hard time typing in that I have to go back and correct all the time.  This really, really ***** people and I am not sure what to do.  Being that it is Saturday my neuro isn't in his office and sitting in ER screaming every time one of these attacks hits is not my idea of a cure.  I am supposed to have another MRI but haven't gotten the date for it yet but  I have the creepy feeling that my MS is advancing.  Now I really know why they call TN the suicide illness...it truly is HE**!!   I hope that I won't have any more of the railroad spike attacks but it's like I can feel the pain just sittin on the sidelines waiting to attack at any time.  Last night it was when I picked up my Mac and Cheese and nearly dropped it because I got hit hard...not pleasant at all.

Any one have any ideas out there?

Hugs,
REna

[Rena705]

Dear dear Ren!  I have called my doctor and spoken to his nurse and she is going to relay my info to him today.  

It is late in the day and that I because I couldn't stop crying long enough to call her but she will do her best to get back to me today.  I hope that this emotions thing is just a passing thing and I can stay on my meds but perhaps he will know what to do.  After all he is my sweet/hot neuro.

I have stopped the water works for now but time will tell what the rest of the day holds.  I will let you know if I hear anything today or tomorrow.  If it get out of control again this evening I promise you, I will go to the ER.  Actually, if when hubby gets home and I start bawling and he asks me what's wrong and I tell him "sniff sniff nothing" he will probably insist on taking me to the ER or find some of those men in the white coats!

I promise to let you know what the story is ok?  Thanks to you all for your caring and helpful advice!  

Hugs,
Rena

[rendean]

PLEASE, PLEASE call your doctor! There is no reason for you to suffer like this. If he is gone for the day , go to the ER!

They can assess you and probably get in touch with your doc since most doc answer ER pages. I, too, would nix the shower. too dangerous at this point with your pain, etc.

Please go and let us know how things go!

(((Hugs!)))
Ren

[Rena705]

OMG...this is terrible today.  I woke up and didn't want to get out of bed at all and it was 12:30 p.m.  When I did get up I didn't want to do anything and felt really angry at everything (except the dogs of course).  Then I started explaining what happened on the weekend to my sister in law on a facebook message and just started bawling!  I can honestly say I haven't hardly shed a tear (except at a funeral) for about 6 years since I have been on Citalopram and Elavil.

The side effects of this Gabapentin apparently can be thoughts of suicide, changes in behavior, depression, aggravation...sounds familiar doesn't it?  Has anyone else had to deal with this once they reached their prescribed amount?  This is terrible!  Now the flippin pain is gone other than just before I take my next dose but I am going to walk around with mascara running down my face?  I am scared to get in the shower cause that is where I think too much and I know I will be a babbling chunk of jello when I get in there.  I am thinking I better call my doctor eh?  sniff sniff  This is the worst I have felt emotionally in a very, very long time.

Rena

[Mike_Shuswap]

I think giving it 3 months is a good idea, that's a fair trial period. I hope you find it starts working for you.

Mike

[monnie115]

I totally understand. So often I just wish for a *new* brainstem. My husband says I can get one of those at a place called Stepford lol. Anyway, I understand the pain of TN and miss the days when I felt somewhat human. Hang in there...hoping the new icepick pain just goes away.

[candy158]

I'm so sorry Rena, I know that this seems never ending.  I am on 2700 mg. of Gabapentin, and I know that that too isn't enough some days,  

Make sure that you talk to your Dr. and let him know about the pain in your temple.  I get those usually right before I get a migraine, and my eyes see stars?  Did that happen to you?

Hope you are feeling better now,

take care, and HUGS to you,
Candy

[Rena705]

Well this is just STUPID!  Just as STUPID as MS is I suppose!  I was fortunate to only have two railroad spikes in my head yesterday!  It was a very different day than the one before I tell ya!

I am not feeling too bad today and went to a friends last night for dinner and lasted till 1:00 a.m. so I don't think that is too bad!  I am feeling really sleepy today but the pain in finally minimal.  If the severe pain happens again, I will head to ER.  

Thank you to everyone for taking the time to answer my questions.  I am going to be on Gabapentin for 3 months and then we will see if it is really helping me...hope so, don't want other option at all!

Have a great Sunday people and I hope everything goes well for all in the new week!

Lots and Lots of Hugs,
Rena

[maxthecat43]

You never know, this might be serious.  If you are still feeling this way, please go to the ER!

Tammy

[Mike_Shuswap]

Wow! What a shame! Is it possible for Gabapentin to cause this kind of pain? Or is it that the dose is not high enough for you?

Gabapentin keeps my TN pain more or less under control, but your temple pain sounds familiar.

I also get a sharp spike type pain in my temple, but no where near as severe as what you describe. I've always thought this temple pain was some kind of headache, but now I'm wodering if this could be TN.

I gotta agree with Ren, don't suffer all weekend, head to the ER for some help.

Take care

Mike

[meg321]

You are right, but I was only thinking one day.   I say things without thinking at times now.  I take mine for pain and neuropathy stuff.

That reminds me, when I had the "panic attack" this week, I had not had mine for 3 days, the pharmacy didn't fill it on time..just a thought.

Hope you are doing better..

meg

[rendean]

I have TN that is the same as yours. I take Tegretol and gabapentin but sometimes it doesn't work  and I do go to the ER because it ups my BP then they take  me seriously.

I know the exquisite pain only TN can deliver. I wouldn't suffer through the weekend, I would go to the ER as there are other causes  of pain the  temple. Call the neuro in the  Monday morning and make an appt. to see if you are progressing.

I know not cheery news but this is how I handle mine,

Feel Better!!!

Ren

[Rena705]

Thank you Alex...you don't happen to have a spare new, better wired head around do ya?  hehe  I am willing to pay top dollar right now!  hehe

Hugs,
REna

[HVAC]

Rena,
  I am sorry.

Alex

[Rena705]

Hey girl...Tegretol is an anti-seizure medication as is Gabapentin.  It is really dangerous to stop either suddenly as it could cause seizure's that can't be stopped.  I appreciate that you are trying to help but be careful ok?  
My Neuro doesn't answer at all and I really don't want to go to the hospital if I can manage to live through the pain.  This trigeminal neuralgia is part of my MS but others here do have it I believe.  

It just freaks me out that the pain was sooo bad last night and I am taking the gabapentin to supposedly improve the pain...hope it doesn't happen again that's for sure.  

Lots of Hugs,
Rena

[meg321]

Oh, Rena, I am so sorry.  I can almost feel your pain and I hate pain !

I don't know what I can do for you, what is tegretol ?   You could stop taking them for a day or so and see if  you still get the rr spike attacks.
Its worth a try.

Does your Dr. answer on weekends at all?  I guess not, they just say to go to ER.. I thought my MS was progressing and it turned out to be my heart, so you never know.

Keep posting, i will check back and forth..

hugs, meg