updates please....

[Nik-key]

Hi old friends and new .....

I just do not have the strength to look through all these posts.

I would like to hear what has been going on with you, life...new treatments, surgeries etc etc. If you wouldn't mind could you post a bit so I can catch up on all of you. Thanks!! Nikki

PS, I wonder, would it be possible to have a sticky where we could all post "our stories"? It would be helpful for new members I would think.

[crysopac]

good idea about the sticky. sort of a short of like an introduction to each of us so new members can get to know us.

As for us and new treatments, nothing horrible new here as far as that goes. Unless you count that I am hitting the chocolate in order to deal with crab butt one and two over here. We are however doing new things around the house. Yup Yup we sure are. We are now officially doing chores. (never mind the fact that they were suppose to be doing them for the last year) They discovered that daddy will pay them with real money. He is such a sucker. Anyway. I hope all is well with you.

bless you
Crystalina:D

[baywatcher]

Well, Nikki, as you can see, I'm still here. And my tn goes along as it has for years - I realize how lucky I am in that respect. Trileptal is working well for me and controls all but the rare lightning bolt spike. I do still adjust the level of meds when I suspect/know that stress is affecting the pain. Of course I have accumulated the stinging and burning and weird feelings, and I don't think they're very well managed by any meds so I just ride along. Ear is still a big problem, pain and lots of it inside and out. An eye spike will still put me in a moment of terror but it passes.

I suffer a lot from polymyalgia rheumatica which came on overnight and shows no signs of diminishing (it's supposed to!). Been on prednisone for several years now with associated side effects. Since I have arthritis - apparently some osteoarthritis (age and a history of hard toting of heavy packs and heavy gardening work probably contributing factors) and now it seems we're talking rheumatoid as well. So may be headed for a very strong immunosuppressant which is not so hot. (Both parents died rather young of bone marrow diseases and this would be a scary step for me I think.) But what the hey, eagles still hover over me and flowers still bloom and I am just about as happy as a pig in clover most of the time.

Thanks for asking; I also like to know how everyone's doing and what they're filling their busy lives with. Love to you, Nancy

[saraiderin]

I have asked that I be allowed to travel for my MVD and am on the last push with my doctors and the hospital I get my care at. Things are going to get really ugly here soon but, I am not willing to settle for anything less than the best care possible. Sarah

[allih]

I'm still taking Neurontin for bilateral Type II TN. The good thing is that I am finally able to cut back on the dosage. And I might even be going into remission as the pain seems to be letting up.

Other than that things are the same. Fibromyalgia and migraines are still a problem but it is soon to be warmer and some of this may improve. Also still looking for a Neurologist that knows something about this AND who is on my insurance. That is much harder than it seems.

Alli

[bilateral]

Hi Nikki,

I have had bilateral classic TN for the last 4 years. I have not had any remissions. I take a high dosage of tegretol and keep hoping for the best that TN won't get worse.
I have not had any surgeries.

I also had cancer three years ago.

Take care,

Anne

[Nik-key]

Thank you all for posting, its good to put a history to the names.

Nancy, I of course know yours, but what is this polymyalgia rheumatica?
Is it anything like rheumatoid arthritis? Sorry to hear you are still suffering, but as always, your attitude is an inspiration! love ya

Crystalina, Chocolate is always good :D

Anne, seems you have had more than your share, so sorry to hear this.
Does the tegretol keep your TN at bay? It is the only thing that ever brought me relief, but sadly I had a deathly allergic reaction to it after about 3 weeks.


Alli, fibromyalgia and migraines are enough to deal with on their own, I do hope you are going into a remission!! :)


Sarah , good for you!! Don't settle, you go girl! I still believe that knowledge is POWER, and we are the ulitmate - single most important facet in getting the help we need and deserve.

I look forward to hearing from the rest of you :) Nikki

[bilateral]

Hi Nikki,

In answer to your question: I still have breakthrough pain but it's manageable for now.
I am glad that you are back on the forum again! I hope you will stay around?

Take care,

Anne

[Nik-key]

Anne I am very glad to hear your break through pain is managable now, that is no small feat! I always plan to stick around, but then life tends to throw me a curve ball I can't seem to catch and I find I stop posting for awhile, but I just like a bad penny, I always show up again :D

[bilateral]

Hi Nikki,

That is just as well!
There are a lot of people who posted over the last few years who have disappeared and have not come back again. It's a shame really. You get to know them a bit and then they leave without coming back from time to time.
I know some people need to do this, perhaps because they are no longer in pain and don't want to be reminded of all the pain they went through, a pain that might or might not come back. I understand that people want to move on.
Others perhaps disappear for other reasons.
But it's always nice when people return too.

Take care,

Anne

[saraiderin]

chocolate is a trigger for my restless legs syndrome and I have had to cut it way back. Boy do I miss it.

[KIMMERS]

Nikki? Is this Nikki from a long long time ago? The one in love with her dogs? If this is you, WOW great to have you back!!!

Kim

[ToTs11]

Hi Nikki,
Not much to tell from me, I'm much the same, bilateral TN, no remission in just over 5 years, no surgery, still on the meds.
Still helping out the TNA-UK.

I did go and visit Nancy last summer in Maine, Jean also came to visit whilst there and we had a fantastic time.
It took my breath away to see the wildlife there ( I saw so many eagles, a black bear and whales and porcupines and......) and the beauty surrounding us was amazing.

And that's about my news.

lovely to see you back,
we missed you.

Lots of Love.. Tracy x

[Pennyann]

I am new. I had MVD on the left 12 years ago. I also had some pain on the right but it wasn't as debilitating as the left. Before the surgery I had tried different meds with really bad side effects and no relief. I had both sharp shooting episodes and constant burning episodes. I had a great 10 years but about 2 years ago it started creeping up on me again.
In April it was enough to make me finally see the doctor. I have an appointment with a neurologist in June. I am on Neurontin. Either it or chopping off my hair made the burning pain go away. This time the right side is almost as bad as the left with the exception that the right never really had the constant burning pain. All in all it isn't as bad as the first time around. I called that drop to your knees in agony pain. This has only gotten as bad as grab your head and swear up a storm in public pain. ;)

[Nik-key]

LOL yep the same Nikki....AND STILL in love with my dogs!!! :D
Great to hear from you too!!!

Nikki? Is this Nikki from a long long time ago? The one in love with her dogs? If this is you, WOW great to have you back!!!

Kim

[Nik-key]

Hi Nikki,
Not much to tell from me, I'm much the same, bilateral TN, no remission in just over 5 years, no surgery, still on the meds.
Still helping out the TNA-UK.

I did go and visit Nancy last summer in Maine, Jean also came to visit whilst there and we had a fantastic time.
It took my breath away to see the wildlife there ( I saw so many eagles, a black bear and whales and porcupines and......) and the beauty surrounding us was amazing.

And that's about my news.

lovely to see you back,
we missed you.

Lots of Love.. Tracy x

Oh that is fantastic!!! I so wish I had known! I am in New Hampshire, would have loved to have met you and Nancy!!! I have met jean already :) Of course with Lynn, I most likely wouldn't have been able to anyways, so I wont beat myself up for being away so long. I agree its just beautiful in this neck of the woods...but the winters:eek: bluck could do without those, and this last one was just reidiculous!!

Sorry to hear you haven't had a remission, but I was glad to hear you haven't had the surgeries. I do know they help so many...but I think with folks like you and I, with bilateral and complications....they only make one worse....well I know they made me worse :(

Great to hear from you!

[bilateral]

Hi Nikki,

Have you read any articles on surgeries making bilateral patients worse or is it a gutfeeling you have, based on the fact that the chances of a successful outcome are reduced for bilateral patients, plus of course your own personal experiences.

Take care,

Anne

[Nik-key]

Hi Anne, I use to have just tons and tons of information bookmarked ...but my computer crashed:eek: and I haven't to date had the energy to do the massive amount of research I use to do.

I did read articles that said just as atypical TN is harder to treat so is bilateral TN. Most information one finds on bilateral TN also includes MS, making it difficult to do a lot of research on it.

Every doctor I have seen has also said bilateral TN is harder to treat as well. Just an interesting tidbit, my left sided pain only started after my MVD on the right side. Strangly I am not the only one this has happened to:eek: Though such is the case with TN, there is no "good" explanation of why that is.

[bilateral]

Hi Nikki,

I am not surprised that you don't have the energy to do all the research. You have a lot on your plate.

I know that bilateral is harder to treat: I think it is in part because the chances of the MVDs being successful on both sides are less that they are on just one side.

I started with TN on the left side ( about 4 years ago) - three months later it started on the other as well!!
No signs of MS.

Take care,

Anne

[Nik-key]

Anne,

Oy, sorry to hear you too have bilateral TN. Seriously, isn't one side bad enough:eek: Just curious. Do you find you have classic (typical, type 1) TN on both sides? Or does one side tend to be more atypical?
Hope you have a good one , Nikki

[bilateral]

Hi Nikki,

Both sides are typical ( classic) TN.

At first the GP would not believe me, saying that it was very rare. But if something is rare, it means somebody has to have it....:-((

Take care,

Anne