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How I finally cured my Atypical TN2 pain


#21

TN2much,

TN1, TN2, TN12b or whatever are just observations of symptom patterns possibly in conjunction with imaging, so on that basis someone could be positive that they have TN2, as a result of ‘diagnostic’ criteria, yet it is not a diagnosis in the sense it states a definitive cause, just a description of symptoms. Vascular compression on imaging is no proof of cause for TN1.

In your case, do you know what causes, aggravates yours, and what have you tried outside of meds? Sorry if you have stated previously.


#22

Can you tell me if you still take this and how your pain is currently. Would love an update, and I am so happy for you! May try this!


#23

Hi Janice,
Although my pain was lessened, I still had bad flares that would come and
go. Also, if I didnt take all my meds the pain would come back. So my
quest to get rid of all my pain continured.

Long story short: I ended up having something called Sluders neuralgia
(contact point headache). I had to have sinus surgery and that cured it.
and I am happy to report I am now pain free and off all my meds.

Unfortunately, I had to figure all this out for myself. None of my doctors
could, they just wanted to keep throwing pills at me. I read about contact
point headaches and I went to my ENT to ask him to check my sinuses to see
if that could be the problem. He looked into my nose and said “everything
looks good!”. I asked for a CT scan, just to be sure. When the CT scan
came back, he could then see the contact point deep within my sinus. I had
surgery to correct it (septoplasty, turbinate reduction, maxillary
antrostomy and septal spur removal). I am now pain free and thank the Lord
all the time. Best wishes to you.

Heres a link about Sluders neuralgia


#24

Dear samirish,thank you so much for your posting above and I am so happy for you that you now have no pain.My path through this with the medics echoes yours! As well as being my best advocate.My pain is also similar…my nose is so painful as well as the teeth on the right side,all the symptoms listed on the site etc! Now I need to go back to my doctor…I’m in the UK so NHS ( long wait.)Let us see but thank you again.


#25

Sorry you are in the worst of it. I took a 5 day course of steroids for ATN and it really helped cool it out.


#26

Wow did they really! Fabulous for you though and I’m pleased for you! What steroids did you take and now do you have pain? Did your doctor think to do it or did you research the use of steroids.Thanks for posting…I look forward to your reply!


#27

My doctor gave me a 5 day pack where you take several and keep decreasing. It really worked. But not permanently. It worked for weeks. You cannot take steroids for a long period of time. It has serious health consequences if taken for months.

I used for my wedding and honeymoon without problem.


#28

Thanks for reply…how is your pain now? Are you on any medication? Best Wishes!


#29

My pain is back and at times last month very bad but mostly a few electric stabs and long burns and stings. I take Triliptal and Ltruca and A muscle relaxer. I hate these like everyone and they never seem to really work or work for like a whole year.

But in a crisis predizone does do it so ask. It’s nice you replied. Hoping for a good day for both of us. So far mine is!


#30

Thanks Jean_Marie,yes I will go ask my Dr.for predizone to use when in dire pain,thanks! I really do need something like that especially as I travel long plane journeys and the stress etc can really bring on the pain.I have atypical so no burning shocks.Im sorry you have been suffering.I had a not too good day today but tomorrow will be better as I have decreed it!!!And I agree with you re the medications!


#31

Can you tell me how you went about finding a doctor who will treat this condition with Botox?


#32

Thank you all. I am new to my diagnosis. Using cyclobenzaprine (muscle relaxant) helps relieve acute symptoms. I am seeing a chiropractic neurologist in Delray Beach FL three times a week. Treatments are helping(laser, neuro exercises to redirect messages brain is getting, gentle cervical adjustment). Primary care physician insists I see a neurologist so that’s next. Taking 100mg of generic Tegretol twice a day since I couldn’t tolerate side effects
at 200 mg.


#33

I truly Believe this is what I have. I have had 10 surgeries including brain surgery for TN2. But I believe this is my problem and I am on many medications including narcotics and nothing helps my pain and I need to find a doctor that will help me. Do you know of any ENTs? I’m in Ohio but I am willing to travel anywhere.


#34

Karen, I have ATN as well, have had it for over 10 years and I love my neurologist, who I’ve been seeing for at least 16 years because of neurologically complicated migraines. She’s in Columbus, Ohio – which isn’t terribly close but isn’t terribly far from you.

Ann McLean, DO
(614) ■■■■■■■■

I have found her to be an outstanding listener, open to suggestions, willing to try things, and generally exceptionally “tuned in” to her patients. Even better, in my opinion, she became a neurologist because she has migraines. She gets pain.

You may feel free to tell the office I sent you, I have sent you my name privately.


#36

Did they work?
Desperation here.
Going back over all the posts and seeing if I missed something.


#37

No, it didn’t work. My TN has gotten better on its own, thankfully. One
thing I realized is I get the episodes in the fall and the spring when
seasonal allergies are prevalent. I started nasal lavage (Netti Pot) and
that seems to help more than anything. One year ago I had a Speno Cath
procedure done wherein they numb the nerve with Lidocaine. That helped
too.


#38

Ok
Thanks for getting back.
Good suggestion about the Neti pot


#39

I have botox done every three months too. I was referred to a different neurologist that administers it by my regular neurologist. His insistance was that I had migraines and that’s how he requested the procedure from my insurance company. I’d previously gone to a dermatologist but he coded it for trigeminal neuralgia. Insurance declined because it was considered experimental. It’s all about how you code it with insurance! the death panels will kill us all.


#40

I have worked in USA health/prescription insurance industry for 25 years. First, there’s no such thing as a death panel. Second, there is a difference between health INSURANCE and health CARE. You should consider health insurance the way you consider car insurance, it helps defray the cost of covered items, ti does not cover every single thing that happens to your car or is needed by your car. Health insurance functions the same way. Third, everything has to be coded correctly as a type of checks-and-balances, it’s not just about the money, it’s about quality, effectiveness, and safety of care.

The medical/health field is incredibly complicated and, unfortunately, someone had to be last in their medical class. Your doctor could be the one who got his license to practice with a C- minus grade average.The billing practices and coverage practices are there partially to protect you from your own doctor.

As an example: I had a doctor’s office send in prior authorizations to begin treating type one diabetes with growth hormones. There is no study on record to substantiate this care, not even experimental, and no care record of what would happen if growth hormones were injected into a child who was developing normally, so coverage was denied. I had another doctor routinely prescribing viagra for sinus infections. I’m pretty sure we’ve all seen the commercials and we all know what the “little blue pill” is for, which would be nothing whatsoever to do with your sinuses, or anything about the waist for that matter. Coverage denied.

Before you complain about your insurance be sure you look at the whole picture. In your case egoiste, why was a dermatologist diagnosing TN in the first place? That’s not remotely his field, which kinda makes my point about someone having to be last in the medical class.

Overall the insurance company wants you to be healthy. The healthier you are the less they have to spend on you, more profit for them, less expense for you. Health and prescription insurance is going to prefer preventative care over acute care every time and they’re going to be leery of experimental treatments because they don’t want to make you worse experimenting on you when you’re already having issues. You can always appeal care and insurance tends to be very reasonable about customizing a plan for you but is has to be reasonable, too, with some medical foundation.


#41

oh! the dermatologist didn’t diagnose me. I already had a diagnosis. I happened to be there because I was scared from a big mole I have feeling harder and larger than I was used to and I asked him about botox treatment while I was there. he’d never heard of botox for trigeminal neuralgia and looked at me like I was crazy lol. a few days later his office called me back saying he’d found a “protocol” for it. I called insurance asking why it was turned down and they said it was because the doctor didn’t submit enough background research on the protocol. I reckon if there was enough research, it might be approved. but this week I went to a neurosurgeon and he recommended MVD right off to bat. he wasn’t even interested much in my prescription regimen. didn’t even have a recommended change. he did seem to be surprised I hand’t tried or was on nortryptaline. I might ask for it in the meantime before I decided on a hole in my head lol. he gave me the secondary less invasive option of a peripheral neural stimulator.
sigh.