Can't stand the pain

[steph74]

I've emailed my doctor's office, but I'm feeling pretty sick with the pain from TN and occipital neuralgia right now.  It hurts to move my head at all--great big shock sensations and little bitty burning ones.  Baseball bats pounding on my head and electrical wires taped to my cheek...  Teeth hurting, muscle pain in my back from the pain in my head...

I'm taking 100 mg Lyrica 3X/day.  I don't think I can go that much higher on this, or whether it would make much of  a dent in the pain.

I also can't focus on my work at all like this.  It's so hard to do anything when you feel like this.

I guess there's not much of a question here, just a moan.  Unless anyone has an idea on how to stop this.

Stephanie

[Nancy T]

Frank's suggestion about a pain clinic sounds good. Sounds like you need a pain SPECIALIST.

I just accompanied my mom to a pain-management clinic (she has bad fibro) and was very impressed with the total-patient, comprehensive approach and knowledge of meds and other things. It was a nurse practitioner specializing in pain, and she took more than an hour talking with my mom.

Aren't Lyrica and gabapentin essentially the same thing? This NP said they were--that they called Lyrica "son of gabapentin."

Have they considered decompression surgery? Or does that not work for MS patients?

Hope you get some relief from the increased dose and can work with your doctor to get better control over your pain. Good luck to you!

Nancy

[Csativa]

Hi Stephanie,

I'm so sorry you are having such a difficult time. It's good to hear that you are getting some relief right now, although it is brief as you say.  It's easy for me to say, but please try not to loose ho[e.  There are many meds out there.  

I am not trying to be a dark cloud, but I have been dealing with chronic pain for many years.  It has taken quite some time to get to a point where right now doctors have found the right combination of drugs that bring some relief.  The problem for many chronic pain sufferers is having to come to grips with the fact that we will always have to deal with a certain level of pain; even with medication.

Have you discussed attending a pain clinic with your GP/neuro?  I have had very good success with the one I go to.  My doctors all support this and admit that pain specialists can many times do a better job at controling pain.

At times like this, I realize there is little comfort in saying you are not alone, but you are not and with some persistence you and your doctors can find the right combination of medication.  My thoughts and prayers are with you.

Frank  

[steph74]

Thank you all for your sympathy.  It's nice to know someone knows and understands!

I added the 300 mg of gabapentin in the afternoon and at bedtime.  Now 300 mg of lyrica and 600 mg of gabapentin/day.  I was pretty tired last night!  It did take the edge off, hopefully over a few days it will improve even more.

My dr always says to "increase my meds until you get through this period" but I never seem to get past "this period."  I just seem to need to increase my dosage and I've never been successful in cutting it back!  Every time I try the pain comes back.  I've had TN since Feb of 09 and I'm afraid it's permanent, although the meds do seem to help, I know there's a limit to how high I can go with them and I'm afraid I'm going to max out the dosages and then what???

[supermum_ms]

[[[[[[[[[[[[[[[[[[[[[[[HUGS]]]]]]]]]]]]]]]]]]

Take care!

JJ

[michelleric]

I am so sorry you are having so much pain.  I can totally relate to you. If the gabapentin doesn't help, call your neuro for something else. Life is too hard to deal with when the pain is so intense.  There are other meds you can try.

Thinking of you,
Michelle

[slightlybroken]

It made me dizzy when I had to up it as well. It does take a while to get use to, but if it at least helps with the pain, do try to stick with it. It might take a few days to get the full effect as well. Try to stay as cool as possible..okay. The heat is definately not gonna help the situation. I keep my fingers crossed and I hope you'll get some relief soon. Follow Ess advice too if things keep progressing.

Take Care

[steph74]

Thanks, both of you.  

My neuro said to add 300 mg of gabapentin at night and another 300 mg during the day, if needed.  Gabapentin tends to make me dizzier than pregabalin, but I'll hopefully get used to that soon.  I took one a while ago and it's taken the edge off the pain, but it's certainly not gone.

She suggested the sx could be worse from the heat we were having, and it did start to get worse at that time, but it continued to get worse through the weekend and this week, after the weather had cooled off.

Who knows why...

Hopefully it feels a *bit* better before 5:30, when my older girls have their swim meet.  I could hardly cheer for them on Saturday because my head and face were hurting so badly.

[essdipity]

Hi. If you're at the point of not being able to stand the pain, it's time to up the ante. Don't email your doctor, call. And if you don't get a reasonable response, go to an ER.

I know that's a lot of hassle, but still, you will be on record with this. I think with some neuros it becomes a matter of 'white noise'---X number of people complaining about Y issue during a typical day, so you need to 'break through' and convey your message, loud and clear. Keep doing this until you get some help.

I know you're not the kind of patient who screams at every hangnail, and your neuro should know that too. If he/she doesn't, it's time to turn up the volume. Please keep us informed on this. I feel bad for you and hope that things change *immediately*.

ess

[slightlybroken]

I'm sorry your feeling so bad right now. I just wanted to pop in and tell you I was thinking of you an I hope your doctors will get back with you soon.