I was wondering if anyone else has experienced what seems to be my daily life? I am okish in the mornings and as long as I take my meds as soon as I wake up I’m only at about a 3 on the pain scale until around 1pm then it starts to worsen:( and by 3pm I’m more around a 6 or 7 on pain. It’s exhausting ESP trying to work, be a wife, and a mommy! Does anyone else have these kinda episodes??
Yes I agree with this. I get up and only about a 2 but by 7 to 8 o'clock at night I am at a 9 to 10 even after taking the meds all day as I was told to. Then it takes me 3 hours to sit quiet and not move for about 3 hours just to go to bed. My sister told me to get a journal and write down everydays activities, by doing this you can figure out what triggers what pains and how to prepare for each event that may set the pains off. It has helped me allot.
Thanks Dee, I’m without a doubt going to do that.
I am glad and hope it works for you. I know that by doing this I found the days my pain is higher when I don't drink enough water and don't eat enough foods with proteins. I am never hungry so I just keep going till the pain just knocks me down so I have to make a conscious decision everyday that it is meal time or I can go straight through and not eat which is the worse thing to do. I did not realize this till I started to keep me a journal so I love my journal and it has helped me go 20 days pain free at one time, before a set back but I will get there again. Praying for you.
Barbie,
How and when do you take your meds? This can impact how your day is…
When I was only dealing with my right side TN1, my pain was controlled on 800mg slow release Tegretol. I would take 2-200mg tabs in the morning and 2-200mg tabs in the evening.
When my left sided TN2 worsened, I was taking 3 different meds and they were taken 3 times a day. 830am, 12:30pm and 6:30pm.
If you’re only taking your meds twice a day, you might want to discuss with your doctor changing when you take them.
Just a thought.
A pain journal is a great idea. By doing this I found a few triggers that helped me avoid them.
Mimi
Dee, it’s exciting to hear you had a good period;) I do think my pain might be worse on days I’m really stressed out as well. I started my journal yesterday and I have looked back over the last week of notes in my phone where I have noted the pain and what it feels like. I go to the neurosurgeon tomorrow;) I’m praying for a date to have the decompression surgery soon!
Mimi,
I am on gabapantin I take 4 300mg pills 4 times daily along with Tylenol or Percocet depending on if I can push thru the pain. The dr upped me to this dosage 2 months ago hoping we would get things back under control with meds but no luck so far. I did tegretol for a small period of time but unfortunately it actually made me have seizures! Then we went to trileptol and the same thing happened! Then we started the gabapantin and I finally got some relief! The pain became tolerable for a period of time and now this monster is back with a vengeance! You said you found triggers you hadn’t seen, may I ask what some of them are? I do know brushing my teeth, putting on my makeup sometimes, chewing, and sounds kick my tail… ESP certain sounds! Do you ever have problems with sounds? Thanks for the support! Prayers for you
Sugar was a culprit I found…I generally don’t take in a lot of sugar but if I had something with high sugar like a donut or glass of juice or coke it would set me off.
I had a problem with sounds called hyperacusis which didn’t affect my TN but was not fun, it came along with vertigo, side effects from my Tegretol.
Other triggers were talking, chewing, washing face, drinking…
My right side has been well managed it was my left side which came out of remission (TN2) and progressively got worse. It eventually was TN2 and TN1. It became resistant to meds and so I had an mvd on April 9th.
I have been TN pain free, although I am still on Tegretol as I still have TN on my right side. I was able to get rid of two meds though, Baclofen and Dilantin.
If you’re not getting adequate pain coverage, you need to advocate for yourself and look into other med options. Having pain coverage is so important. When I had exhausted all med options, with no relief, that’s when I started researching my options.
I hope you’re able to find relief soon, ((( hugs ))), Mimi
Thanks Mimi,
I actually have an apt with the neurosurgeon tomorrow to hopefully set up a date to have the MVD surgery ASAP… I have taken other meds as well, from anticonvulsants to antidepressants to anti infflamitorys, to narcotics… I’m so exhausted and praying hard we get a date tomorrow! I have TN1 and TN2 as well. My left side is a billion times worse than my right… I’m hoping to get the left side done;)
I know you are wanting to have allot of relief quick, please do allot of research about the surgery before you do, I still am looking for the positives of it other than a brief period of relief. My Neuro put me on Neurotin with the tegretol and that is where I received the relief. Just pray and research take care.
Barbie,
I can tell you that I made a very informed decision, lots of research here as well as other research sites. I personally chose mvd because I didn’t want to do anything destructive to my Trigeminal nerve. None of my mris showed compression ( I’ve had tn since 2002).
Although mvd is a serious surgery, I chose a very experienced surgeon, who has performed over 700 MVDs. My surgery lasted 3 hours and my ns found 3 compressions, 2 small blood vessels on top of the nerve and one large vessel rarely placed beneath my nerve.
I have had no complications and am so grateful that I’m on the road to recovery with no TN pain.
It’s such a personal decision, good luck with your appt. tomorrow.
I hope you leave with hope for the future.
Mimi xx
Thank you Mimi!!xxx
I did, for a week one time. I would be up for hours when it was bedtime having horrible attacks and just crying and rocking. Went back to the doc and got an increase in meds. That did the trick for me.