Pain Free days?

[Mom2boys]

Hi Guys,

Do any of you have pain free days followed by a few days of pain. I have been very successful with managing my pain with trileptal and doxipen. Ill do great for awhile and then have a few days of setback. During the setbacks my mind starts to wander and wonder "is this it?" "is it going to go away again" etc...

I have been dx with more of an atypical vs the typical. My pain lasts all day long on bad days....

does anyone every get pain on the top of there head? I associate it to the feeling of wearing a hair elastic too long. Where it is sensitive to touch.

My "TN" side is my right and my symptoms can change daily and include:

• right top of my head
• tip of my nose
• cheek and sinus (pulsating)
• tooth pain one top
• upper and lower jaw pain
• tingles in and lip chin (numbing or tingling)
• ear
• My eye will feel like its blinking a bit slower or my eyelid will flutter or feel like it is.
• AND NECK! My neck is the real zinger- I know its going to be really bad if Im having a "neck" day



Sometimes I can have a few of these symptoms, all of them or pain free for sure. If I had to choose what works best it is the doxipen. Its a rinse I use on a trouble tooth, crazy really but if I skip a couple of days, I have a bad day for sure.

Now that Ive been Dx for over a year I dont have the life stopping fear I had. I try and relax and know a better day will come. Id be fooling myself if I dont question (after a few bad days in a row) if it will subside again.

Does anyone here have the same typ of symptoms. The floaters? The "atypical" factor I guess :rolleyes:




L.

[southerngirl]

Its seems to be different for each of us, when mine started out I had the eye twitching about 20 yrs ago and the jaw pain but didn't know then what it would turn out to be. Now I have pain in the top of head also sometimes in my ear my sinus acts up and of course the good old nerve pain. So we can't put tn in a box its different for each of us. And the wintertime is the worst for me.
Just try and find the meds that help you the most and hang in there, we're always be there for you when you need to vent.
Catherine

[EE03]

I've been getting the top of the head thing on the right side here lately. Not a headache, but a pain that waxes and wanes, just as the rest of this stuff does!

And the left side has been going crazy for the last 4-5 days, but i'm not surprised as it usually gets worse when stress goes up, and mine has been off the charts here lately! All in all, it has been breakthrough pain. I upped my meds several times for the nightly dose, but its starting to calm down.

As always, just my $.02(I wish they left the cents sign on these keyboards),
E!!!!

[Silver Swan]

Dear EEO3:

Try this: hold down Alt. key while pressing 0162 -- Oh, dear, just tried it and it doesn't work on this Forum program. But try it with your regular e-mail. It works for me. There is a list on the Internet of Keyboard Shortcuts for special characters. Sorry this hasn't answered your problem, but I tried! :p

Shirley H.

[Mom2boys]

Southerngirl-

When you say "nerve pain" do you now, after 20 years, have the zap and shocks of classic TN?

I have been Dx with trigeminal neuropathy due to the success of doxipen. Some say this is pre TN some say I can stay like this forever never advancing to a shock stage. Part of me would like to have an MVD surgery and hope for the best but most of the time I feel my pain is managable on meds. I have been successful at very low doses so I have a lot of room for upping my meds.

Exercise and stress reduction is key for me. I am an Electrical Engineer and mother of two small boys (5 and 3) who are the love of my life, not to mention my dearest husband of 15 years is my rock. I tend to be pretty headstrong so when I do have bad days its hard to stop and redirrect time for me as I know if I want the pain to reduce quicker I need to really focus on my stress and get loads of sleep. As many say TN is our built in stress monitor!

L.

[southerngirl]

no I never had the shock type of tn, acturally I was diagnose with atypical face pain because they said they could not say it was the tn nerve that was the culprit, and the surgeon here would not do any operations because of this. So it was meds for me that was my only help, I was sucidal at the worst point in my life, that was about 3 yrs ago, I have learned when the worst comes that getting in bed and just being very quiet it would help along with my meds. I believe stress and in my case sinus does make it worst, so look for your triggers and try and find answers that help you. I am going to buy a hot tub and sit in that at night I heard that helps destress and also helps you sleep. Also Dr Becker from bioinnovations.net sells a sinus cleanser that I am going to try. So in the end we keep trucking on, trying to find answers that will help us, I hope this helps you
Catherine

[Grant]

As my TN has progressed I have also noticed that the pain level fluctuates wildly. I have classic Type 1 TN with the middle branch on the left being the bad one. I have a few weeks of almost no pain other than when I touch the trigger point (top lip) and then there are times when I go downhill fast, to the point that I get spontaneous zaps all day. This can last for a while, then get better, typically when I increase my dose of Keppra.

Unfortunately, each new attack seems to be getting worse than the one before. From Tuesday until this morning has been dreadful and then amazingly, ALL THE PAIN stopped completely, suddenly, today. This only lasted for about 30 mins before the background zaps started again but it was a great vacation from the pain.

Cheers,

Grant

[baywatcher]

Way back when, I had long breaks between pain episodes. They grew gradually shorter, but the final blow was when they escalated rapidly to non-stop pain. Since then I usually describe my remissions as being about 12 hours - in other words, if I miss one dose of Trileptal I'm in trouble. But as long as I can keep the schedule on track and the dose low enough to leave me room to boost it a little on those bad days of stress or overwork, I can avoid the really severe crash into pain.

Like so much about tn, a lot of our experience is so individual that it would be hard for a newcomer to predict what to expect. But at least I've found the chance to compare my progress with others to be helpful. I'm much less likely to worry or think that my pain is weird - sure enough, someone out there is having the same experience.

But if you have some remissions, don't worry, just enjoy! Nancy

[irishchick]

Hi L., I had what I have since heard termed Pre-TN for about 6 months prior to my first electrical jab. I had a general aching over the face, sometimes quite severe. I was diagnosed fairly early into that, but the neuro didn't explain anything or tell me what I was in for as far as jabbing pain or how to take tegretol. Up until my MVD, I knew when the jabs would hit as the aching would get worse and more frequent. My surgeon said he had never had any other TN patient mention this.

Since the MVD I get occasional sharp pains, but after about 6 months all the aching went away. NO more meds, which thrills me.

Go to the stickies at the top, I had posted a site from Winnipeg on the old forum, and someone has posted it again. It is for cranial centre for nerve disorders CCND, and it describes pre-TN, and has a wonderful tutorial (3-D) about TN. Great site.

I hope you never progress to the sharp pains, but knowlege is power.

Karen