HORRIBLE PAIN

[michelleric]

I am scheduled to start IV steroids this afternoon.  I am absolutely excruciating pain with TN since yesterday.  This is the worst episode I have ever had. Even my hair hurts...I should have gone to the ER last night, but decided to wait to go to the infusion center today. Up all night with this severe pain. It is affecting my right side of face (as always), even forehead, ear,scalp and eye...just really bad.

Does anyone know if there is ANY pain med that can help me? I took an extra trileptal yesterday, and will do the same today, but it is not touching the pain.

Do u think I need to call doc this morning, or do they have a "doc on call" at the infusion center? It is an MS center where I will have it done. Just need some relief...
Thanks,
Michelle

[essdipity]

Michelle, I'm so glad your TN is better! From what I've read, IV steroids are the best treatment for this intense pain, especially combined with a short course of narcotics. That seems to be exactly what you did.

If there's a next time, get on it right away. Don't leave any time for it to get worse, as that makes it much harder to control.

Hang in there.

Hugs,
ess

[michelleric]

Thanks again for your comments.  I am SO SO much better. The pain is GONE, and now my face is just sensitive. Yes, the narcotics helped, and I think the steroids have really come in to help with the inflammation in my face.

I am hugely relieved. So hard to get that kind of pain, life can not function properly when the pain overcomes you, I am so grateful I got "fixed up", for the moment anyway.

I am running a fever though, but I think I probably caught my kids cold since my immune system is down. I dont even care, I am just thrilled to be out of that awful pain.

Thanks again,

Michelle

[Karen99]

Narcotics can be a godsend.  Don't hesitate to use them.  The combination of pain and no sleep is awful.    

I pray that you are sleeping and the morning will find you feeling better.

[ShadowsSister]

I forgot to tell you that the Deep Pain is caused by the nerves misfiring and it is the worse pain, it sounds like this is what is going on with you. I saw the list of medications posted earlier, and I tried all of them, Nothing Helped, but it is different for each of us.

My Prayers are with you as well as my Hugs {{{~!~}}}

[ShadowsSister]

Michelle, Sweetie, I would suggest that you find A Good Pain Management Doctor. There are both Good and BAD Ones, The first one I went to was very rough and plain Mean, but the one I found after that one, is so kind and caring, plus he is good.
So I think you need a Good Pain Management Doctor. That is all they do address the pain. I have been seeing Dr. Dahi for over 13 Years, and only recently did we have a problem, but he got to the bottom of it and now is coming up with a new game plan.

So just know there is help out there, but you have to look for it. My Neurologist nor Internist were able to address the pain it was like they couldn't or wouldn't do any thing. They acted like they didn't hear me or something . For the deep bone pain the only thing that has helped has been Morphine.

Pain can wear us down like nothing else, it robs us of energy, being able to sleep or think...So I hope you can find some help.
You are in my Prayers
{{{{~!~}}}} DJ

[PastorDan]

Yeah, what Maggie said!

[LLWB]

I just wanted to say I'm so sorry for your pain. I hope it is better soon. Gentle ((((((hugs))))))). I will pray and ask the Holy Spirit to relieve your pain, and guide your doctors in helping you.

Maggie

[michelleric]

I meant to thank you for the list of meds. I do take Trileptal and doubled it daily the past couple days. It didn't touch the pain though.

I appreciate you taking the time to write the list,

Hugs,
Michelle

[michelleric]

Thanks for your comments. I got a call yesterday morning from home health, and asked if I can come in now to the infusion center. She put me on hold and then came back and said no, they were full.

I hung up, and about 3 minutes later, a nurse from the invfusion center called and told me to come right in. The home health nurse told her I was miserable, and they didn't want that.

I went, in tears, and got all set up. They called the neuro about 3 times while I was there, and she called back within minutes each time. They wanted to put a pain med in the IV, but I drove myself so couldn't do. I think they were contemplating admitting me, the pain is out of control.

Anyway, it was done, and I am still in the same amount of pain, and cant sleep. They told me it could take a couple days for me to feel better. I also left with a narcotic pain med RX.

The home health nurse is coming to my house tomorrow and Sat. ERIN: I am sorry I couldn't meet you tomorrow in the infusion center, I know we both go to the same place. Could have been a "silver lining" in this mess!

Thanks again to all of you, I don't know what I would do without this forum...

Michelle

[Erin0313]

Michelle,

   I am sorry that you are in so much pain. I am starting IV Steroids tomorrow also for Optic Neuritis. It's a long story and you are in pain and my eyes are a mess so maybe another time :)

I hope that the steroids help & you find relief. It would be nice if they are able to give you something to help you sleep also to make the suffering go faster.

I'll be thinking of you while we are hooked to our IV's tomorrow and the next day etc.

Hugs,
Erin :)

[Karen99]

Sorry that you are having so much pain.  I hope your infusion went well and the doc gave you something else/or addition to ease your pain.  Get plenty of rest and take good care of yourself.  

The medications that are listed in my book for trigeminal neuralgia are:
Tegretol
Dilantin
Cytotec
Neurontin
Trileptal
Kappra
Gabitril

[goofysmom1]

I am so sorry to hear that you are in so much pain - I hope that you can reach your doctor or nurse to get something before the weekend.

Gentle hugs,
Chrisy

[Wobbly]

Good luck with the infusion, but call the center and let them know how much pain your in.. do you take any meds at home like Neurontin?  for Neuropathic pain?

take care and let us know how things go

wobbly
dx

[Lulu54]

Michelle,
Its horrible that you're dealing with the TN pain on top of everything else.  Even though your infusion is at the MS center, please call in advance and let them know you are having so much pain.  I'm sure there must be something they will rx for the neuropathic pain.

good luck,
L

[HVAC]

I would call the Doctor ASAP especially since it is nearing the weekend.

Alex