hello all,hope you all had a good christmas.not sure where i am up to or what is happening with this silly illness. been on pregablin (lyrica) for almost 5 weeks. doctor said that it should have kicked in within matter of a week or so but there hasnt been any drastic improvement. over last few days it does seem to have eased, occasional mild pain shooting across my cheek or above eye but no constant ache or severe episodes. could it be the meds taking effect? but woke up at 5am this morning with familiar pain and have suffered all day. it seems worse when have had few days off, makes me feel worse, i start getting my hopes up then its back with avengance. also another gripe (everything annoys me at the mo) had mri 12th december. called docs end of last week no results, called tuesday and they said results just in but doc not checked them yet, please call back later the receptionist said, this was 8.30am, called 11.30, doc not checked them, called at 1.30, doc still not checked them, called at 3.30, docs close at 4pm as was christmas eve, doc has now seen them and asks me to do telephone consultation on monday! why didnt they just book me in for telephone consultation for that afternoon in the 1st place. no idea what my results have shown but doc wants to discuss something, been thinking about it all over christmas. very anxious. do i want it to show something? if there is a blood compression on the nerve and they operate to remove it is that it? will this horrid tn just go away? my docs arent great and just dont fill me with confidence. if nothing shows what happens next? have so many questions. will update on monday and say how my results are.
Hi Borris,
My best advice to you is to read anything and everything on TN.
Keep an open mind and remember that there is a lot of misinformation out there…
Finding a doctor or Neurologist that has experience in TN or is willing to learn AND be supportive is KEY!
Usually when someone presents with suspected TN, a prescription of Tegretol is given as it is still considered the first line of treatment AND most doctors confirm diagnosis of TN by the patients reaction to tegretol.
A visit to a neuro and subsequent MRI to eliminate brain tumours or MS as a possible cause…compressions on the nerve are very difficult to see on MRIs unless they are high resolution even then it can be difficult to find.
I’ve had TN off and on over the course of 11 years and had several MRIs, NONE showed compressions…during my MVD surgery in April my surgeon found 3 compressions.
(I copy pasted this below, a long time ago, I forget from where, but it gives you an idea of known and suspected causes…)
Below is a list of known and suspected causes:
A blood vessel presses against the root of the trigeminal nerve.
Multiple sclerosis - due to demyelinization of the nerve. Trigeminal neuralgia typically appears in the advanced stages of multiple sclerosis.
A tumor presses against the trigeminal nerve. This is a rare cause.
Physical damage to the nerve - this may be the result of injury, a dental or surgical procedure, or infection.
Family history (genes, inherited) - 4.1% of patients with unilateral trigeminal neuralgia (affects just one side of the face) and 17% of those with bilateral trigeminal neuralgia (affects both sides of the face) have close relatives with the disorder. Compared to a 1 in 15,000 risk in the general population, 4.1% and 17% indicate that inheritance is probably a factor.
POSTHERPETIC NEURALGIA
When chickenpox is contracted during childhood, the virus that causes it, herpes zoster, can remain dormant for decades in the nerve bundles near the spine. The virus will sometimes reactivate, causing the condition known as postherpetic neuralgia, or more commonly, shingles.
In cases of postherpetic neuralgia, the reactivated virus travels around the affected nerve, causing pain. The herpes virus can affect the trigeminal nerve, resulting in postherpetic neuralgia, or pain, in the facial areas supplied by the trigeminal nerve.
Definition of AD
http://www.fpa-support.org/2011/01/anesthesia-dolorosa/
All that being said, compressions are a suspected cause, and many people who have an “early” MVD have a better outcome than others who’ve had it longer…also many people with NO TN have been found to have compressions at post mortem autopsies…all in all in my opinion MVD surgery can help and it is the least damaging procedure out of all offered.
No two people experience the same course of disease with TN, we share similarities but that’s all…what works for one doesn’t work for others…
It’s a very frustrating thing.
Truly Boris, the focus is managing the pain, learning everything you can, knowledge is power and it will help you to make informed decisions when you need too concerning your care.
TN isn’t all doom and gloom, many people including myself have had long remissions or success managing the pain with meds or alternative treatments.
I hope your MRI is clear and you’ll be able to experience some relief from your pain soon. (( hugs )) Mimi