Hey its Amy
 

(((Ginny)))
 

Hi Amy,

Nice to see here. Sorry to hear that you're in such pain. We love your rants. Despite the fact that you're in so much pain. I wish you were back here in better shape, however we will take you as you are. As always! Trigeminal neuralgia is known as one of the most painful things you could ever experience.

There is a new Alzheimer's drug that is being used to treat major depressive disorders. It is called namenda. Using it for a depressive disorders is an off service way to use it. This drug has had good use what alzheimers patients. There are some studies that have found that they treat depressive disorders very well. There are also the standard medley of drugs. I myself have just started increasing my Nortriptyline, due to increasing depression myself.

I can certainly relate to the wanting to die. I have had many of these episodes over the last couple of months. However I have not had that horrific pain of the trigeminal neuralgia.

Thank God for your family and the psychiatrist to have kept you with us.

If you need information on the namenda please let me know. I would be more than happy to look it up for you and send you the articles.

So good to talk to again.

Love and hugs,:hug:
Victoria

Hi Amy!!

How awful - I'm going to go read about this condition - I know nothing about it. But I'm sorry that you are hurting on top of the severe depression. There have been days recently that I have wished I could "check-in and check out" but I have no one to look after my Mom. You are lucky to have a family to look out for (and vice-versa).

I hope a med change will help you. I'll keep you in my prayers.
:hug:
Anne

Thanks guys
 

I need the support. I dont have dragon anymore not that I could get it to work right!!! Cant talk with kids everywhere. They are the ones I worry about not me...seeing mom go through all this crap. Im just tired after 3yrs. I am blessed I know..kinda hard to see though.

My Rsd has also raised its ugly head and crawling in my hole is not working so Im doing something about it...Waiting until my doctors think Ive waited long enough. I thought staying off the computer would help me. In a way it hurt me. Im isolated during the day, my mom has my dad and his problems plus hers...

The family is tired too and I can tell...but supportive. Since I couldnt and wouldnt eat due to my tongue swellin up and the pain I got dehydrated and I had seizures. So I have a ton of extra stuff now going on making the doctors scratch their heads. Finally one actually touched and examined me and I got hit with it..... this suicide pain dx where you go a week with no sleep...NONE and then dropping from exhaustion. You pray for it to end and it doesn't. Then finally after keeping your hair from touching your face, not wanting to shower cause you know it will set it off , you cant even let your kids kiss that side of your face it finally slows down and you can see light

Thats the only way I can describe it. Some of these meds Im on make my vision blur so I cant read or watch tv not that I can pay attention..I never understood how some of you could go days without sleep. you hear ringing in you ear and your eardrum vibrates, your balance is gone and any minute you think you will fall..that the pain takes over and consumes you...I pray Im not scaring anyone else..but this is my experience and no one elses...I have to do something no matter how much it hurts or I will be consumed....I know the RSD had something to do with this and I remember one of my Neurologists that did an EMG on me said my 5th cranial nerve was slow...that was 2yrs ago...but the dentists always ignored me when I told them I had RSD...I haven't had an attack of RSD in over 6 months.

Im sick of it....just sick....ok enough venting...I pray no one else goes through this and if you have I feel ya now!!!
Its so frustrating...just frustrating. I would love to reconnect with you all..send me your numbers. My computer crashed 6 months ago and I lost them all. I can talk now without pain; for now...better than I can type.

Thanks again so much for your support guys..I miss you all...I'll keep in touch...

Vic- I'll keep the drug in mind but with me having reaction after reaction Im sticking to golden oldies I know have not caused bad problems in me...

Ocgirl- yes it is trigeminal neuralgia its horrible just horrible..

ginny, i am so sorry...i also do not know about this dx but it sounds very horrible.

(((((ginny))))))

Hi Ginny, have you checked our TN forum here?
http://neurotalk.psychcentral.com/forumdisplay.php?f=26
They might have some info links or new discussions about treatments there.
Kimmydawn- our forum admin has TN also.

But nerve pain is nerve pain,:( no matter where it rears it's ugly head.
It sounds like you are between a rock and a hard place with the med sensitivities at the moment.

we have a Depression forum too -
http://neurotalk.psychcentral.com/forumdisplay.php?f=37

After reading a lot about TN, and, with the info. my neighbor gave me about her TN which resolved, they all tout the praises of Neurontin.

I have never taken neurontin.

After the Lyrica problem, should I be scared to take Neurontin for weight gain or screwing up the diabetes situation even more? Liver?

Has anyone here really gotten a LOT of relief from Neurontin?

Amy, I wonder if you should try Neurontin on another quick trial basis right away to see if it relieves these horrific symptoms right now.

Amy,
My heart just aches for your pain. The pain sucks the strength from you everyday before you even start. I can add you to my prayers, and pray for a medication you can tolerate.

I hate feeling helpless to help others.
Did you happen to try plain Asprin, a coated one maybe? I found sometimes that the simple things like that can offset and help focus.
My hugs and love,
di

No doctor will prescribe a thing right now...
 

Not until I am stable mentally they say...well if it werent for the pain I wouldnt be mental...so I wait..No I gained weight on Neurontin and my hubby said it makes me a zombie..but I dont care about zombie I need relief...thanks for your prayers and I will keep in touch...Been up all night trying to sleep..now for the bath.

Thank you Di but asa is not recomended for me I have had kidney problems from too much ibuprofen...but when its bad I take one anyway. As long as I dont gulp them Im ok I think...

i occaisionally get numb side of face and ringy ear, and post surgery had some SCM pain and headaches, but generally no, i do not have facial pain. The headaches and SCM pain resolves with cranio-sacral work.

face pain
 

I get numb and tingling on that side of my face and I also get pressure behind the eye causing migraines....occipital nerve compression at the top of neck...muscles pulling there ...tight...hard....compression...pain.....also ear and sometimes deafness....

I am on Max dose neurontin.....I didn't gain weight and it has helped me as I didn't like Lyrica side effects....

I have also incresed my nortriptyline.....a depression med Amy.....and it is also a nerve pain med ...another one to think about...but go slowly....

take care all
lvoe and hugs,
Victoria:hug:

So Good to Hear from You, Amy!
 

and i am sorry you are having such difficulties right now.

my TOS is so long-standing, i have almost every sx in the book, including the TN ones plaguing you this minute. i feel for you.

you were very brave to go through detox the way you did and to step off all of the pain meds. very few of us are able to do that, amy... and you did so with courage and grace. i know how hard that was, believe me.

please stay close. we need you here. you have been missed! we will support you in any way that we can - you know that - and you bring so much to the forum, amy. with your inimitable style, girl! - there's just no one like ya!;)

know that you are loved beyond measure, and this will all be OK. what with your medical background, and your "inside" TOS experience - i don't have to tell you patience is a virtue when it comes to adding back meds to see if one might bring you some relief now from this new and alarming set of sx you are unfortunately experiencing-:(.

personally, i have had great luck with namenda, which is being used off-label as a tx for both nerve pain and for depression. but i would take my hydrocollator and my coldpacks over the meds, any day!:p

i still take (half my former dose of) topomax, but have been able to discontinue my A/D altogether.

but the meds are just one piece of the equation. you need loving support from people who understand the predicament you find yourself in (i call it "t.h.e. TOS mess"). unhappily, we've got more than a few here!!!

many TOS armz around you, amy. again, it is so good to see you. i have often thought about you and wondered how you and your young family were faring. thank you so much for checking in - please, please stay with us now that you've found us again?!? we would all love that.:cool:

xo
alison
"Be Brave"

Yes I needed this place
 

Well Alison its been mostly good ok its been pain free for six months and I was even able to work for awhile part time...except depression from isolation..that I have to make myself get out of the house...I used to run all day on meds of course everyone "knew in this small town i hate" that I was on meds...all the surgeries..heck my kids could write a book on TOS...but ultimately it was for them and hubby...and I did feel good for awhile...but honey if you ever get off meds you miss them and the freedom they give you but now I dont miss the 4wrecks in a year...I was just on too many and didnt notice I was too drugged...

I was headed for divorce..but alas reason prevailed and I am getting healthy sorta..still need to quit smoking :eek:.now I have this gorgeous house and still have my maids...hubby wouldnt dare take that away or there would be heck!!! Too bad I have to do laundry..I got 5 acres, a lake I need to enjoy more and a family that has missed me...I got a plane ticket to Las Vegas..I could get as far as there to come see you guys..lol. I had to cancel a trip to see an old friend I hadnt seen in 14yrs due to this dental TN crap!!!! Or yall could all come down to the Ole South and visit Amykins!!!

How is Chloe bean??? April is doing great straight A's in high school now!!! Ted is in the University of Al marching band..yall remember me chaperoning him in high school??? God these kids grow!! Roll Tide!!!!!!!!!!!!
Cameron is doing well still struggles with school but I am right there with him during homework pain depression or not cheering him on...So proud of the kiddos...despite their crazy mama


Im high from no sleep can you tell??? LOL Well off to shower after laundry uggggggg......and then go to a movie and hopefully sleep tonight...love you all too..and god bless the support.

Neurontin
 

In my experience of 10 years with TOS, RSD, Fibro, Reynauds, Scoliosis, on & on. Neurontin is the ONLY medication I can tolerate and it DOES most assuredly help my nerve pain.

Yes, there is weight gain, but not the sugar issue (to the best of my knowledge). It will sap energy, but what else are you doing while having this pain??

I have managed to settle in to a relatively low dose. (600 mg a day). 100mg am, 200mg mid-day, and 300mg at bedtime. This is after many years of trial and error. It is possible to have too much or too little of course. Give it time and your body will adapt and hopefully need less rather than a higher dose.

I have read many posts where some have been prescribed very high levels of Neurontin. I do not know how anyone can function with too much. If the levels are 'right', you will have relief and be able to have at least partial days with some decent quality of life in them.

Neurontin, I understand, does not have an adverse reaction when combined with other medications, which is huge.

In my opinion, Neurontin is worth a try and will not 'hurt' you in the way many other 'nerve pain' medications will.

I deeply hope you all can find relief and a managable level of pain (if we must).

Please ask your physician about Neurontin.

Warmly,
Anne

I also think that sometimes when we're on a lot of meds, whether one med is a bother or not cannot be told, since it may be reacting with others - and/or a later trial at a lower dose would be successful.

I restarted Topomax, but at only 50 mgs. in the AM, and it's been ok. Don't know if it's helping pain, though...

My dilemna
 

I have been on and off Neurontin for the last 4yrs. I have to take medicine for a specific health problem and often Neurontin interferes with the different types of meds that are out there for this problem and I can not take 2 anti seizure meds at once...I just cant...after trial and error I know what meds are important to me for my sanity and health and what has to go...I am so hyper sensitive to meds now. Every one that has been restarted in the last month gives me horrible side effects. I have to be able to drive my children around without fear of a car accident..every day..

It sucks for me but that is the way it is now...like it or not...I go back to my neurologist in a month after I get used to these meds I am on now. I will go up slowly on the meds I am on now and after I did research on TN one is also used to treat it..My family knows me and I changed so much on Neurontin personality wise...I wish I could take it...I really do...

Thank you for the information though...Hopefully an increase in my meds I am on now for depression and mood will help with the pain if they dont...I will rely on the support from my family and this board to get me through the worst days and laugh on the days that are good..Thanks so much for all of your support and advice...