I hate the waiting game

General General TN & GPN (Old Site)
1

I have been pain free since December 27th --- AMEN! However, I did not realize how much anxiety I am under until just the other day. I am just waiting for the next attack. I realized my mom is too. She keeps telling me, "don't eat this or don't do that..." All things that can cause a trigger for me.

Also, while we don't have traditional stress in our home right now, my sister and her 3 kids are here. 2 of them under 3. So there is a lot of crying and loudness going on. I am just not use to that. My daughter is 13, so those days are long over. I don't mind it, but I can feel myself tensing up by evening time.

So here I wait, wondering if I might be pain free, or if the next one is just waiting around the corner.

I read stories of people that are in pain every day and I feel so bad for them. I should not feel so sorry for myself because my pain is nothing like that.

2

Lisa,

Mine was a ten day journey from (expletive deleted) to medication.

In January 2007, my Dentist of 20 years prodded, poked w/needle, and had me stand on this scan thing, Speculated Bell's Palsy, referred me to an Oral Surgeon.

I laughed, I cried with the Oral Surgeon, because he did a bunch of something to ME that had HIM give ME a same day appointment with a Neurologist.

And then my new best specialist friends did the best they could.

That little area just above my right lip still grabs my attention.

I have never been troubled with constant pain.

Understanding that pain is pain, and this one is different.

Talking anxiety, I trust that you don't eat your family! bob

3

So understand this…I am always telling my husband I feel like I am just waiting for the next attack. I have so much anxiety because of this…hate this aspect of the disease…wishing you a pain free day. Jen!

4

Hi, Lisa—

I am glad to hear you've been pain free since 12.27!!! When I had the first remission at about 11 mo./3 week I was feeling much of what you have described as waiting for the next attack. It was almost like I found myself "missing" the excruciating stabbing that I had become used to. I was not missing the pain like I'd miss my best friend, but it had been eating up so much of my thought life as well as eaten into my ability to tend to my " to-do" list (such a hard hand to have been dealt being a type A personality, business owner, etc., etc.).

During the first remission, my little ones were 2 & 3. So I used my time to pour into them (play, cook and read with them) and enjoy their little angel time ;-). I also spent my time talking (gently whispering, really) with my pre-teen. Then there is the hub, I'd say out loud to him AND others what a great hubby I have. Simply enjoyed my time (but it felt strange because my mind REMEMBERED the attacks and would tense up waiting for them)....so much so that when it did return (of course, I was without meds by now), I dropped to my knees in pain. I cried a LOT because of the physical pain but also because the loss this disease brought was so drastic. It took a week or so to build back up to the HUGE amount of Tegritol (something I weaned off of and then back on to). It took a while to control the pain and then Tegritol stopped working, and so the story goes…

I pray your remission sticks for a good long time and as you become used to your pain-free life again that you'll find a new, refreshing joy in your days! Currently, I experience remission windows using Botox for migraine (side effect is that it works for TN too!) and a combo of low amounts of different meds (usually rotating meds works the best for me).

Remission is such a beautiful word. I believe we will see longer and longer remissions for this disease during our lifetime. I have a sense that science will stumble onto a way for us to experience remission from this, one day :-)

Have an awesome weekend!

Sincerely,

LyndaS

5

Lisa we are a little alike. I also began with Classic TN in May this year, medication got it under control. I now have Atypical or Neuropathy. I can live with this as it is nothing like the pain of the classic TN.

I am trying to get life back to normal, yesterday I met friends for a long walk, wrapped up well. After the walk they went to the pub, I came home as my teeth were hurting, jaw hurting, felt tiered and unwell and went to bed with a heat pad. Cancelled our trip to the cinema that night. But the classic TN did not start again. What a relief.

I will no longer go for long walks this winter, short walks yes, but not long walks, too much for me. I had the fear this morning that the Atypical would worsen as I know so many are in so much pain with this condition, but thankfully all feels well again.

I am returning to work this month, again, i will have to discover what i can and cannot do, and how to try to manage it.

We are so lucky compared to others who have no restbite, we need to be thankful, and learn enjoy life again without putting ourselves at risk of evoking an other attack this we can only do by trial and error and some common sense.

On the subject of the children being there,although it is a pressure, at least you know that your TN is standing up to the strain.

Also I was superstitious, a feeling of I need to worry, otherwise it may come back, and this is too good to be true, how long will it last?

It is natural to be on your guard but the longer your remission lasts the easier you will find it to let your defences down in fear of another attack.

When you get the opportunity try to relax, allow your mind and body to relax and thank your body and anyone else you care to mention for being pain free.

6

All good tips..... We spent today shopping so that was fun. Though I believe I jinxed myself. Gums are hurting. Not a bad hurt, it's managable, but I am tired and out of sorts. Nothing a good night's sleep will not cure.

elstep, mine is definitely a mixed bag on the type I think.... definitely Atypical, but I do get those shocks when having the boring pain. I do know the gabapentin is controlling it, because I was getting pain every day.... Funny how the minute I go to the doctor to have my medication increased the pain goes away. :) Ain't that life though?

7

Lisa

I know EXACTLY what you're talking about! I keep a notebook where I have made up a pain chart for my mom; how many attacks she gets per day and the severity of the pain as well as the medications she's on in order to determine the best ones and how long she's been feeling a certain way before we make any changes to her medication so I almost never allow myself to be happy in days when she doesnt experience any pain because I always expect it. When she didnt get it during the day I'd expect it in her sleep so I go sleep by her side and it's horrible this constant state of fear of what might happen! But then she doesnt get it for a few weeks and time makes u forget..u get caught up in daily things, she starts laughing again and suddenly we stop waiting for it. I guess just get busy with life and ur mind will do the rest for you :)

Congrats on being pain free :)

<3

8

I too hate the waiting game. Not a good thing for someone who suffers from severe anxiety disorder, bipolar 1, and ADHD as well. I constantly am on the lookout for any signs of a TN attack. When I do believe a TN attack might be eminant I head for the Percocet. Now I wait for my appointment with the neurosurgeon another waiting game. I also wait to see what side effects will occur from all the medications. Maybe this disease should be named trigeminal wait neuralgia or something like that.

9

My husband keeps telling me, start spoiling today by worrying about tomorrow, and there are lots of people on LwTN who would love to have this problem, as they are never without pain

10

I am confused. Some people and literature states that when the pain returns it is worse and the space between remissions gets shorter. Some people and what I have read states the opposite.

I guess this is just another case of everyone is different right?

11

Probably. And I think it probably depends on how you define remission. I would not consider a remission to be pain free for 10 days.... but that is just me. This seems to be a pattern for me.

12

Does it depend if your Classic TN or Atypical?

I will put that up as a question.

13

Hum, not sure.... I think I am Atypical, though I do get the classic TN1 zaps when in pain. It sucks.

14

That it does, Lisa!

After the 2007 MVD, PAIN returned with a vengeance.

After the first 2008 SRS, (radiosurgery) PAIN returned with that same vengeance.

Since the second 2008 SRS, there has been a seemingly greater frequency.

My diagnosis is TN1.

I'll shout, as tolerated;) with LyndaS to science. bob

15

Asmara you mom is soo very lucky to have you. It's wonderful you are keepin track for her and very good for her pain control!!! Peace, Min

Asmara said:

Lisa

I know EXACTLY what you're talking about! I keep a notebook where I have made up a pain chart for my mom; how many attacks she gets per day and the severity of the pain as well as the medications she's on in order to determine the best ones and how long she's been feeling a certain way before we make any changes to her medication so I almost never allow myself to be happy in days when she doesnt experience any pain because I always expect it. When she didnt get it during the day I'd expect it in her sleep so I go sleep by her side and it's horrible this constant state of fear of what might happen! But then she doesnt get it for a few weeks and time makes u forget..u get caught up in daily things, she starts laughing again and suddenly we stop waiting for it. I guess just get busy with life and ur mind will do the rest for you :)

Congrats on being pain free :)

<3

16

I second that Min, such a devoted daughter, I have 2 caring sons, but there not quite that caring! Asmara, I know your Mum is a lot of pain but she is fortunate to have such a lovely daughter looking after her.

17

I think I am about a week with no actual attacks although I keep feeling strange sensations in other areas of my mouth. Sort of like if someone were gently vibrating something sonic elsewhere on my body. Does this make sense to anyone? It isn't constant, just once in a while. I wonder if this means that if I were not taking all the meds then I would be having regular TN zap attacks or if it would be the same strange sensations? Well I certainly am not willing to stop my meds to find out. It's that am I crazy thing in my head again, the acceptance bit you know.

When I was at the neurosurgeon the other day I asked about a sinus/mouth MRI or was it CT? This was suggested by another member here. He said the brain MRI encompassed the sinus. I guess so. (I have had sinus surgery in the past and this was something that was mentioned should be looked into.) As for the mouth, I go to the dentist for a FULL exam this week and I am petrified. I will however ask about the mouth MRI and CT.

Regards,

Phoebe aka Mrs. Allergic to Pain