Back from Boston.

[michelleric]

Well I ended my trip early today, the TN pain is excruciating.  Today is day 4 of the TN(ear, scalp and face), and it is getting worse and worse and worse. This "might" be the worst ever, which believe me, is saying lots. I flew home full of pain meds, and here I am. My neuro faxed me pain RX by FedEx. I cant keep doing this. The pain is too much,

I see a headache specialist next week, and then the pain management doc in 2 weeks. I need to do whatever it takes at this point. This is not a quality life at this point. At least the house is quiet and my family wont be home until next week, so gives me some time to hopefully get through this episode, again.

Just *****. I am so frustrated, angry, sad, shooting throbbing pain, too much. This TN is now coming about every 4-5 weeks, and lasts about 2 weeks. At some point I think it will be continous until the nerves just die. Bring it on already.

Thanks for lsiteing to me vent, just cant explain this to anyone who understands this. I dont mind the limping, the falling,numbness, vision loss, the whatever(s), but this pain is just really getting to me already. I know it can always be worse, but really I think I am close to the bottom of handling this.

Enough already I say...
Michelle

[michelleric]

Just an update. The pain is more tolerable at the moment. I cant decide if it is better, or I am just so drugged up from the drugs that I dont care about the pain, or it is really better. Either way I am doing better.

Good thing I am home and have no where to be. This post just took me quite a long time to write and write it so it is ledgible and understandable. I feel a bit like I am drunk dialing without the drink.

have a good weekend   Michelle  
thanks again to all u wonderufl people

[steph74]

Michelle,  I'm really glad you got some relief.  When I went to the ER they gave me a rx for percocet, too.  I actually thought it helped a reasonable amount--took the edge off and my brain could still function.  (Heck, I could drive fine on percocet, *not fine* in pain!)

I just posted about my 3 hour visit to the neurosurgeon today.  I'm glad I waited because the consult really confirmed my feeling that I want to go to a pain management doctor before considering any surgical/radiation procedures.

Hope you continue to get some relief.

Stephanie

[rendean]

SO glad you are getting some relief!! Check out Steph74's post on TN and ON. Good info.

Take care and get some rest!

Hugs!
Ren

[michelleric]

Thank you to all my wonderful friends here. I dont know what I would do without this forum, truly.

UPS came and brought the scripts. Somehow in my MS mind, I thought they were bringing me the actual meds...Took all I had to get dressed and finding my keys was a bigger issue than I thought was possible. (they ended up in the car, I never have done that, guess coming home from the Kennel last night with my dog, the keys were not on my mind. Nothing was except the pain.)

I had to go to 3 pharmacies until I found one that had the meds I needed  in stock. Not and easy task. I ran into a neighbor, not good. I didn't want anyone to know I was back, just wanted some privacy. I was crying at that point, think it was after leaving pharmacy 2, I was a bit rude, but it was apparent I wasn't feeling well.

Anyway, I took one of them, didn't do anything. I waited about 45 minutes then took the next one, and now I am doing significantly better. Thank God.  I am a bit confused on how to take them, but one says take 3 times a day, and the other says take 4 times a day as needed. They are Oxycontin and Percocet.

Anyway, I am now a bit more back to the land of living. Still in pain but definitely more tolerable. Thank you, thank you and thank you...
Michelle

[rendean]

I was talking to Michele and UPS just delivered her meds!!!!!!!!!!!!!!

Ren

[lovemy6monkeys]

Oh Michelle, lots of gentle ((hugs)) for you. I hope you get relief soon!
~Jess

[Mike_Shuswap]

hang in there Michelle!

I`m a fellow TN sufferer, although I`ve never had it go on and on like you. I can only immagine the pain you are going through. My heart goes out to you.

I hope by now UPS has delivered your meds and you are finding some relief.

rest well

Mike

[Lulu54]

Turn off the Fed Ex cloud and start rooting for UPS to come.  
She did call CC to confirm that they had been sent and now it is a waiting game. They say they were sent by UPS, overnight.

As of 1:30 today the scripts were still not there and Michelle is still suffering, badly.

We talked a bit - she is such a trooper. If it were me I would be curled up in a ball in a corner someplace, screaming.


I'm sure she will be checking in here later today.

-Lu

[rendean]

{{{{Michele}}}}

I am so sorry to hear of another relapse. Funny, yesterday you were on my mind all day and left you a brief message. Now, I know why I couldn't get you off my mind.

I know your pain and I know how disabling it can be. I've had to cut back on my Trileptal due to a blood dyscrasia and now have daily pain. However, my pain is nothing compared to yours and am so sorry you are in misery.

Someone recently told me about radiation to help TN and its success. I haven't researched it but perhaps you could talk to the doc about it. It beats surgery and it's side effects.

Instead of a rain dance, I'm doing a FedEx dance.

I hope the new meds work for you!!!

{{{Lots of gentle hugs}}}

Ren

[sllowe]

Damn Chelle, it's back w/a vengence - I'm so sorry!

Two weeks must feel like forever - any chance of getting in w/the pain doc sooner? On cancellation?

ttys,
Shell

[steph74]

Go FedEx truck, GO!

[michelleric]

Thanks for all of you being here. Well I am at the window, which my computer looks out too, waiting for the Fed Ex truck.  Just wanted to say thanks for being here to help me get through the night. It will be good to sleep again as well once the pain gets under control.
Michelle

[steph74]

Michelle,  I feel your pain, so to speak.  I posted a week and a half ago about my unfortunate trip to the ER with the worst TN pain of my life.  It was worse than the 5 day spinal headache after my LP, worse than 3 natural childbirths, I rated it a 9 and the nurses and dr pretty much acted like I was drug seeking.  I was doing all the deep breathing/relaxation I could to get through it and when the dr touched my face I burst into tears.  

I asked my neuro if I should see a pain specialist.  She wanted me to go back to the neurosurgeon first.  I'm going this morning to placate my neuro, but honestly, the surgical options don't sound all that reliable.  Plus, I have bilateral TN *and* occipital neuralgia on both sides!!  What are they going to do, make my entire head numb?  (That's assuming surgery could work and didn't cause worse pain!)  But I'm hoping the surgeon will agree to send me to a pain specialist.

I think I'm lucky that the *excrutiating* pain didn't last as long as what you're experiencing.  It's funny because when it's not absolutely horrible, it's still pretty painful, and I take like a handful of lyrica and gabapentin every day (not literally, but fairly large doses) and it still hurts, but at least it's not the completely incapacitating pain.  I really wish my neuro or neurosurgeon could have seen me then.

And with all this (plus other notable clinical signs), I still can't get DMD because my MRI is clear.  So, we "watch and wait" as my pain gets worse and worse...  But hey, who cares if it might get so bad that I can't care for my children or work any more??  Don't worry about that, they say, it hasn't happened yet.  

Sorry, hearing about your experience just brought this all to the front for me, too.  I'm usually pretty stoic about my own pain, but I hate hearing about others in pain, so I guess my own feelings just bubbled forth, too.  But I am so sorry you're having so much pain.  Please let me know what the pain specialist says.

Regarding meds and the ER: When I went to the ER in a cab, they refused to treat me until I had someone come to pick me up.  So I had to call my husband to have someone sit with the kids (who were luckily in bed at that point) to come get me.  So frustrating.  About steroids, though, my neuro does sometimes order a monthly dose of 1 gm IV solumedrol (the nurse comes to my house to do it).  It might help calm your episodes a bit.  I stopped doing it because the  steroid side effects were getting to me, but I think they'd be worth it at this point for me, at least.

Gentle pats on your arm or back coming from me (when my pain is really bad, even a hug is painful!)  Praying you get some relief soon!!

Stephanie

[debtea]

I am so sorry that you are in so much pain and struggling with this!  I just wanted to add my support and send you hugs.  I pray the Fed Ex. gets there early and the pain meds get you back to a place where you can handle everything.
Just know we are all here for you and vent as often as you need!
Feel better...
Debtea

[supermum_ms]

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

jj

[Sparkysarah]

I think you have shared with some of us who have not experienced TN, the intensity and excrutiating pain that you are going through and what a courageous person you are.

There is nothing that any of us can do to take this away when even some of the strongest meds have not helped, but I know I am not alone in hoping and praying for you that you can find somethiing to take you down from the edge of this precipice. I think that only someone who has experienced TN can really understand what you are going through, but I really feel for you and will join with others in sending support love and hugs. Hang in there with this unbearable experience and you will find courage.

Sarah x

[michelleric]

Thank you all.  It is after 3 in the morning. Up, waiting and hoping this vicodin will help. Tomorrow neuro is sending 2 other stronger pain meds  via FedEx to me. I cant drive at this point. I pray it will help.

Jan, I "think" I have tried most meds at this point, although seeing new doc next week to see if anything hasnt been tried yet. I can up my topomax, but neuro doesnt think that will work either, but wont hurt. She seems almost as frustrated as I feel.Thanks for the good thoughts.

DB, I do try to avoid the ER at all costs, but if I cant handle it, I might call a cab and go. It would only be to knock be out with some type of major pain stuff, which might be good. Too bad they dont do house calls.

I have had IV steroids in the past for this, but dont really see them helping, so I dont do them any longer. I have TN so frequently, I would have almost have to have steroids almost every month at this point.

On a scale from 1-10, the pain can be anywhere from a 5 -9.5.  Tonight is about 8.5, I would say.

Lu, thanks for your hugs and I appreciate your concern.

I will be waiting and lookinf out the window for FedEx later today. (as much as I dislike FedEx, since they laid my hubby off, I cant wait to see the truck today.) Glad hubby is not home.

Michelle

[Lulu54]

All I can say is I'm sending you lots of gentle hugs and hope that they can finally get on top of this pain.

-L

[doublevision1]

Michelle, that sounds horrible, it's awful that you're suffering this much for so long now.  I really hope your pain meds arrive quickly and start giving you much needed relief.  I'm sorry you had tro end your holiday early but at this point I'm sure you don't even care about that and just want the pain to be over.  I don't know if you already said whether this is a new attack or a lingering one; wondering if you had iv steroids and if they helped at all?  

You are right, compared to severe chronic pain, most of the other MS symptoms don't seem so bad.  I've not had TN but did have terrible but brief ON pain; morphine administered at the ER got me through the night.  I know that's not an option on a long term basis, but maybe if it get's too much, maybe this is a short term option?   They wouldn't turn anyone away in that much pain without some kind of help, I would hope?

Hoping your meds take the worst edges off quickly.  Will be thinking of you.

[jdarie]

TN pain is considered the worst pain there is. It is called suicide pain for a reason (the severity, not because people do suicide as an out) being electrically shocked in the face by a very large nerve is unbelievable and very frightening, Very. I did not feel human when it happened. My neurologist had had it once and he cried like a baby in public (on a jet) and said he has never felt anything like it. His only happened once, he does not have MS.

What helped me was Tegretol a high dose. they use other anticonvulsives now but whichever one it has to be at the right dose! The Internist I saw kept dinking around with blood levels and all of that, I was still have break through, saw an experience neurologist, she said we take it up until you basically drunk (ataxia) then bring it back down until you no longer feel "drunk" and that is the right dose to get rid of the pain. then after six weeks we brought it down (the dose) the pain was gone. And I stayed on a maintenance dose, until Neurontin came on the market. sometimes  people have to keep switching anticonvulsives but I know the dose is critical. At least from my experinence.

I will be thinking of you!!!

Jan