Another emergency room visit. :(

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Hello all. These emergency room visits are getting really old. Had an attack worse than any I've had yet. Lasted about 6 1/2 hours solid pain. 3 Vicodin didn't do anything this time. That in itself scared me. This time the ER doc prescribed Tramadol and Naproxen. Did see some relief but actually not sure if just the pain episode was on the way out or not. Either way, I was feeling relief late last night. Woke up though very groggy and VERY sick to my stomach. I had eaten a couple pieces of plain bread when I took the pills since I really didn't feel like eating anything when in pain.

My question for anyone out there that might be taking the same meds, will it happen everytime like that, the horrible sick feeling and the zombie-like feeling as well? My first neurology appt. is tomorrow morning early and he may switch everything anyway. And one other question, the ER doc that recently diagnosed TN for me only started me on 100 mg of Neurontin....could that be the reason I'm still having such terrible episodes? I've noticed alot of people take at least 300 mg. I know its different for each person but I'm just scared since nothing seems to be working for long. Truly hoping this neurologist is a good one and can just wave his magic wand and I'll seem normal again. Not this anxiety ridden and scared person I've seem to become lately. :(

Sending out smiles to everyone and hoping all are well!

Thanks,

Victoria

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Oh, you poor thing! I'm so sorry that you had another attack. I really hope that you find this neurologist you are about to see to be knowledgeable about TN. I am not surprised that 100mg of Gabapentin did not prevent another attack. It is a really low dose. I imagine your new neuro will adjust that dosage or change the medication altogether. Don't be nervous. It's going to be okay.

I've never heard of this neuro. But have you ever been to vitals.com? I check it before choosing a doctor. It's free. Not all docs have been reviewed, but many have. Look up his profile.

Good luck! Feel better. And, let us know how your appt goes.

Christi

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i take tramadol on a regular basis. it makes me tired and will sleep for a little bit then i'm able to be up and about and actually do some school work. it only gives me a quessy stomach when i don't eat with it. i keep a stock of cereal and crackers, things i can eat dry and can suck on them so that they dissolve in my mouth. hope this helps you some.

praying for you!

melissa

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Hello and thanks Christi and Melissa for the info! Went to my first appt. this morning and feeling better just from going. And yes, Dr. Khan said the same thing about the 100 mg of Neurontin. Wrote me out a prescription to get started immediately on 300 mg. He said we will start with that and see how it does for a month and may need to up it, maybe not. I feel better just knowing he was knowledgeable about it all! I'm scheduled for an MRI but not really sure what that will show. He also said to keep taking the Tramadol when I need it and yes, I will definitely eat something with it. lol Don't want to go through that again with the horrible weak and sick feeling!

But today, finally out and about with a good feeling and finally even ate some real food! lol Thanks so much for your concern, both of you. Really means alot and made me smile! : )

Hope this finds you both well and both of you have a wonderful weekend!

Victoria : )

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Oh, good! All good news, and your spirits are up! I'm glad you posted. I was thinking about you today, and wondering how your appt went. Keep smilin'!

Christi

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You are such a sweetie Christi and I thank you! : ) Made me kind of teary but I'm smiling too, if that makes sense. Just knowing that you are out there and others on this site that understand and we can all connect with makes me feel not so alone! Its a beautiful sunny day here finally and that helps me to feel even more optimistic.....truly hope you are having the same kind of day! : )

Keep in touch and hugs to you!

Victoria : )

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Hi, Victoria! I was just wondering how you are making out with the increased dose of Gabapentin. Are you feeling less pain? Are you on the other side of your "zombie" period?

Christi

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Hi Christi! : ) Thanks so much for asking, so sweet of you. I did great Friday and Saturday but a pretty severe pain episode hit Sunday morning. :( Didn't last long, about an hour but pain enough to make me cry at different times and be very upset that it happened again. Thank goodness for Tramadol! And no, still was a zombie later Sunday but it stopped the pain and I'll take being one anytime. ; )

I'm not sure why the attack came on but maybe the 300 mg just takes awhile to build up. I'll definitely be watching it this week and writing down any episodes to see if I need to go up in mg though.

But anyway, how are you doing yourself? Are you pain-free and are any drugs affecting you? And just simply, how are you? : ) You are just the sweetest and I really hope all is well with you Christi! Write anytime of course!

Hugs,

Victoria

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Hi, Victoria! I hope this note finds you on a pain-free day! It has been my experience that it takes a few days to gain relief with each increase of Gabapentin. It seems to need time to build up in my system. And, keep in mind that 300mg is still a low dose.

I am happy to report that I have achieved relief since my increase to 900mg, maybe a week or so ago. A few days back, I actually had myself talked out of the TN dx! That bout of denial lasted right up until I experienced some minor breakthrough pain. : ) I am still feeling discomfort around the time for my next dose.

I am planning on joining The Wellness Center at City Hospital on Friday. it is a state-of-the-art gym run by the hospital. I really need to drop some weight. Years of meds for seizures, Lupus, and now THIS, have put on the pounds. My fear is that exercise is going to cause pain. Sometimes, the vibrations of being in the car cause pain, so I'm a little concerned about the increase in heart rate and blood pressure in combination with movement. I'm definitely going to avoid the treadmill. I'll be looking to use machines that provide smooth, fluid movements.

Speaking of hospitals... When you went to the ER, did you use the new hospital? If yes, is it all that they said it would be? My MIL lives on the memory care unit of Loyalton. I accompanied her to the ER at the old facility last year. It was overcrowded and it smelled funny. The doctor seemed pretty good, though.

Wishing you a great day...

Christi

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Omg Christi, what you have gone through....sending you a hug! But I am so glad to know you have gone through a week without pain at your last note! Sadly, I haven't been that lucky. Since last Friday when my doctor upped me to 300mg, I have had 3 pretty severe episodes. They have been every other day and not sure why.

I have called the doctor twice and each time I have to go through some bitchy lady. Yesterday she told me that it takes about 2 weeks for the increase of Gabapentin to get into my system and when I called today requesting to talk this time to the doctor himself, she said he was out of the office and that she would 'try' to get him to call me tomorrow. (He leaves to go out of the country for 3 weeks after tomorrow!) He had told me himself, at my appt., that if I have any problems to call and let him know. But how do I let him know if this woman isn't allowing it?? Geesh. Obviously she doesn't know much about TN and the excruciating pain!

Brings me to another question that you might be able to answer. I have Tramadol to take on an 'as needed' basis. The attacks come on very fast and Tramadol will take whatever time to start working. Can Tramadol be taken on a regular basis like every six hours whether needed or not and maybe help head off some of the pain? Scrolling down through these reply messages, I saw that Melissa had said she takes it on a regular basis but not sure what she meant. Would be nice to know if it could help alleviate some of this....especially if its going to happen every other day! :(

Today, when the pain hit, of course I was in tears. Its so odd, I'm not a crier but when the episodes come on, tears just start to fall from the intense pain. I hate it. This is all such a nightmare Christi! I know I shouldn't be complaining. I'm just feeling pretty worthless right now and I hate that too! To have this whole thing just start happening out of the blue and then the cost of all the emergency room visits, meds, doctor visit, etc and with no health insurance! Oh and I got the call that they had a place for me to go get the MRI done but wanted to give me the price first. $1800!! And they want half up front! Guess whats not getting done anytime soon. Again, such a nightmare and no end in sight. I think thats the worst part of this whole thing. It will never go away, we just live day to day with the anxiety of when the pain will come on. :( Getting so hard to plan anything....

Anyway! (Please forgive me for my rant just now.) On your question about the hospital....yes, each emergency room visit, I was at the new hospital. Very, very nice considering the old hospital. This new facility was definitely needed. And I'm not sure if it was just that I got lucky the 3 times I had to go in, I hardly had a wait to get in. The most I sat there was maybe 10 mins. before I went into a room. It was never like that at the old place. But hopefully you'll never have to see it for yourself. : )

Goodness Christi, I am going to stop this rambling for now. Hope the reading of this 'book' finds you still pain free and doing something you enjoy! And smiling! : ) Talk to you soon....

Victoria

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Well just wanted to update. After the 3 vicious episodes last week, my doctor upped my Gabapentin to 600 mg on Friday. Had a pain free weekend except for Sunday afternoon/evening. But the pain had changed a bit with it. It was still very intense but it didn't make me cry this time. And when I had an episode the next day, (yesterday), it was the same, intense but no crying. Could it be that the pain is getting a tiny bit easier to take because of the increase in Gabapentin? I thought upping the medicine would just keep the episodes from occuring so much.

Anyway, I'm keeping my fingers crossed either way. : ) And after my last post where I was feeling pretty angry, I thought I should come back and update and in a better mood. : )

Hope all are doing well! And Christi, hoping you are still pain free!

Victoria

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Hi Victoria,

Im glad to see you are doing better, sometimes the Gabapentin takes a while to work. I took it for about six months and it didn't work very well for me but seems to work well for so many others. You are right about the episodes being toned down a bit for now, you may see a decrease in them all together soon. Keep up the good fight and stay positive.

Take care,

Tracy

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Hi Tracy and thanks! I definitely am trying to stay positive but sometimes the anxiety pushs that down. I truly hope that this Gabapentin is doing the job but I'm so sorry it didn't work for you! Do the doctors have you on something else and is it working? I hope so! It seems like, in this day and age, that there should be some fool-proof medicine or an easy fix at least for this problem. Its not like its a new disease. No one should have to go through this kind of pain, ever. :(

Anyway, thanks again for writing. It definitely cheers me up to know there are friends like you and everyone else I've talked to on here. Gives me a smile each time and that helps alot. : )

Hugs,

Victoria

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Hi Victoria,

I take 10 mg methadone 3 x and 20 mg cipralex. I also use homopathic meds. My pain is constant and sporatic except for the first 30 minuites when I wake up. Sleeping is my favorite thing to do but ofter I am help hostage in the play room . . . Its difficult to be an active mom and focus past the pain. For now mine is bearable most days. I am inopporable so Im on the long term plan.

take care,

Tracy

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Omg Tracy, I am so sorry to hear what you are going through. I SO wish there was something better out there to help you. To be in constant pain is absolutely horrible and its just not right. Again, this day and age.....! I know what you are saying though about hard to be an active mom. I know when I have an episode, I block everyone out. I feel so bad for my son and daughter. Gives me such a worthless feeling when I can't seem to be the person I was before all this.

But again, I do try to stay positive and I really wish the same for you! Hard to do at times but we must. Another hug for you...and I'm making it a big one.

Victoria