[nemsmom]

So yesterday I had jaw pain that eventually became pain in my cheek. Then my wonderful eye pain joined the party. Then my pressure affected headache came back. It got so bad I couldn't talk or even think.

My bp was 152/105 (it's normally 110/80) it was horrible. I couldn't even put my kids down for bed, my husband had to do it. I felt horrible when I heard them ask for Mommy to sing them a song.

Well this morning the pain was a little better but still there. So I made an emergency dentist appointment to make sure it wasn't something that needed taken care of instead of landing me in the ER this weekend. So I went, I was almost hoping it would be a cavity, sad as that is. At least then it could be fixed and the pain would go away. But noooo, that would be too easy.

The dentist says no, nothing dental causing it. I emailed my neuro to see what he will say. I imagine the same thing he always does, there's really nothing we can do.

I just want to scream! I can't handle this every night. It is building to that same point again tonight. I just don't know what to do.

I am on gababpentin and I hate it! It makes me so dizzy I can't walk so I can only take it at night. The only other pain me I'm on is Elavil and it is great for my headaches, but it's not touching this.

I just want to be able to make this stop, sleeping it off isn't even possible because I can't sleep through it!

Okay, thanks for letting me whine. Back to dealing with it.

[Erin524]

There are other medications for neuropathic pain.

You can always call your doctor and tell him that the neurontin (gabapentin) isnt working and ask if there's something else he can suggest.

[nemsmom]

Originally Posted by Erin524

There are other medications for neuropathic pain.

You can always call your doctor and tell him that the neurontin (gabapentin) isnt working and ask if there's something else he can suggest.

I actually told him I want to be taken off the Gabapentin on the phone and asked him how he wants me to step down off of it. He told me we will talk about that at my next visit. I am very aggravated with this doctor and ready to switch doctors.

Thanks for the advise.

[Dejibo]

I simply cant stand nuerontin, it makes me feel like I am walking thru water, and all off balance. I had to stop it. There are other meds available, and I hope you speak to your MD about changing.

dental type pain is the worst!

[Erin524]

Originally Posted by nemsmom

I actually told him I want to be taken off the Gabapentin on the phone and asked him how he wants me to step down off of it. He told me we will talk about that at my next visit. I am very aggravated with this doctor and ready to switch doctors.

Thanks for the advise.

When's your next appointment?

You know your doctor works for you, you can always call him back, and tell him (again) that you want to quit the gabapentin and you'd really like some advice how to stop taking it. It's not your fault that you cant tolerate it.

Tell him you cannot tolerate it and you want to step down off of it correctly so that you dont cause yourself any problems.

My neuro used to tell me to wait till my next appointment when I'd call with problems like that...until he realized that I dont see doctors as all-knowing-deities like some people do and that I'd do whatever I want to anyways. (this is what happens when you're raised by a nurse and your aunt and uncle are nurses too. You learn from the nurses that doctors are just human and that patients have rights.)

Patients have rights. I learned about those in a medical ethics class that I took in school a few years back. http://patients.about.com/od/patient...entsrights.htm

[NurseNancy]

dear mom,

i'm sorry you're going thru all this.
i had a thought as i was reading your post.

maybe you could try a massage. and your dh could be taught massage of the neck, face, jaw etc. if you get on it quick enuf it might be enuf to stop the pain in it's tracks, or at least stop the headache.

and, maybe your dr could refer you to a PT who does that kind of work. another idea is to contact your local rehab hospital. maybe they have a therapist that will meet your needs. your pcp can give an Rx if your neuro won't.

please keep us posted.

[nemsmom]

Thanks again, yes I know my doctor works for me and I believe I have had enough! I will give him one more shot. If he doesn't take care of this fast I will be switching back to my old neuro. I never wanted to transfer from her care but she felt my case is too complicated for her, but I'm sure would take me back if she knew what was going on.

I have a call in to the nurse so we will see what happens.

You know I'm sure my hubby would be all over the massage if we can find out how. He feels so bad that right now there is nothing he can do. I always feel so bad for him because I can see how helpless he feels about all of this.

As for PT we have one physical therapist in the area and anyone else would be at least two hours away, as are most of my doctors. My PCP is only forty five minutes away.

Okay time to go do preschool work with my son, he really wants to color circles! Nothing quite makes you smile like watching kids have fun!

Thanks again everyone.

[SallyC]

(((((nemsmon)))))...I'm so glad that something can make your face smile, today.

I sure hope you find relief for the pain, so that you may sleep at night. Why is our pain always worse at night..

[nemsmom]

Originally Posted by SallyC

(((((nemsmon)))))...I'm so glad that something can make your face smile, today.

I sure hope you find relief for the pain, so that you may sleep at night. Why is our pain always worse at night..

Unfortunately my symptoms are all worse at night, or any time I'm tired.

I called the doc yesterday, they told me to take 300mg of Gabapentin in the morning. I told them no way on that one! So for last night they had me up the Gabapentin to 1200mg instead of 900mg then call them today to let them know how it went.

I called and left a message this morning but haven't heard back yet. It didn't help, no way I would never have guessed. You think when you tell them that the medication is not touching the pain they could figure that out. Apparently not!

So the other thing they want me to try is upping the Elavil. That is probably what they'll have me do tonight. But they said if we can't get this figured out by phone I will have to come in. Oh yay a two hour trip one way that I have to find someone to take me. That person also has to watch my son while I'm in there. Someone has to take my daughter when she gets out of kindergarten because there is no way I would be able to get back in time.

The other option is a new (to me) medicine (can't remember the name) but it is likely to have the same side effects and the nurse seemed very reluctant to put me on it.

Oh yeah and I woke up in pain at 3am, luckily I was so tired I fell back to sleep in about a half hour.

But on a positive note, I did get up and make waffles with strawberry sauce, bacon and eggs this morning for everyone. Oh and it's Friday so we get to sleep in for the next two days.

I do love that if I ever need a smile my kids are very good at making me smile. My hubby knows how to make me laugh, even when I hurt so bad I want to scream.

I think tonight is leftover night.

Thanks for the support everyone, hopefully we will get this figured out soon!

[Erin524]

Gabapentin never really worked for me (and it makes my feet swell), and Elavil (amitriptyline) made me feel really really strange. The Elavil was almost as horrible as the Gabapentin, I'd taken Elavil for about a month (it was Rx for my insomnia) and when I quit it, I actually had withdrawal symptoms. Probably shouldnt have quit it cold turkey. Why it was Rx-ed for insomnia I'll never know. I thought it was a mood elevator.

I finally got my neuro to give me Lyrica a couple of weeks ago. He gave me about a month or more's worth of samples, since it's an expensive medication, at least with my insurance.

So far, I've been taking it for just under a week, and no problems yet. I woke up with vertigo this morning, but I dont know if it's the MS, the Lyrica, or the fact that I dont sleep that triggered the vertigo. (I'm thinking it's the MS/and or the not sleeping that caused it)

Is Lyrica the medication that you couldnt remember the name of?