New to group & Trigeminal Neuralgia
 

Hello everyone.....so happy to have found this group but, so sorry so many are dealing with this.

This all started at the end of May.....had the most horrible pain for 1 week straight (I have a high tolerance to pain but, this was like nothing I had ever experienced before!) nothing gave relief....I did finally lay on ice packs which didn't relieve pain but, got so cold it distracted me a little. The pain was in the base of my skull, up to top of head.....into forehead, down side of nose, into right eye & cheek. It also wrapped around right side of head,,,,above ear & into temple. It was constant throbbing, boring pain....some burning......the pain just took my breath away.

Got to a neurologist and she did MRI/MRA all normal....She said it was Atypical TN & started me on Lryrica 50mg in AM & 100mg PM.....not sure if it is working.....have a couple days with just mild to no pain or shocks and than WHAM!!! I get hit....Doc gave me Cambia (a powedered anti inflammatory) & Relpax for when the attack gets to that 4 to 5ish on the pain scale. I take the two of them and if that doesn't work in an hour or so she gave me dilaudid to take. The Cambia/Relpax combo seems to help.....yesterday was so bad I skipped and went to dilaudid.....I have a very high tolerence to pain meds.... a lot just don't seem to work on me, so i really don't like to use them. After pain med yesterday added the cambia and got a little relief. Today was very bad again....woke up ok (as most mornings ) but, as the day progresses it hits.....

What is so hard to deal with (besides the pain) is you never know when the attack will strike.....I really try not to dwell on it and let it rule me. Had 5 good days in a row and thought WOW the Lyrica must be working.....than Friday it starts with a vengence...... TN is cruel.....we still make plans to go out with friends and live life but, sometimes it is so hard...I try to put on a happy face so, I don't bring everyone else down .....my husband is wonderful and is so understanding.....just taking it day by day.

Finding this group is a gift.....have read quite a few posts and its good to be able to share info and experiences with people who really understand what your going through and feeling......friends and family say they do ( and really mean it) but, unless you have felt the wrath of this illness you realy can't fully understand the pain and how it effects your day to day life.

Look forward to chatting with the group & offering my support to others!

trigeminal
 

[Hello Beth
I know just how you feel as I had Trigemal neuralgia for 5 yrs. before the doctors figured out what it was. Then it was 3 yrs of God awful drugs
until my Dr found a neuro surgen that purformed an operation that put teflon pads between the tri geminal nurve and a vessel that was causeing all my problems(it was called mirovascular decompression surgery).. The minute I awoke from surgery I knew it was all over with and now on to a wonderful life.

Find a good neuro surgen!

read up on any drug they want you to take,you have the right to refuse !

good luck
icvmcjuju

I am so happy that the procedure worked and you are pain free!! Only someone
who has experienced the pain first hand can truly understand. I have to say my doctor has been great....at my first visit she was 95% sure it was TN.....The Lyrica seems to be working for me so far. Attacks not as frequent But, than I can have 5 good days and two days of horrible attacks. I would suggest to anyone to speak to their doctor about the medicince CAMBIA.....it has been a great help!!

I am so sorry if I don't have this reply in the right spot. I'm have just started and how this works is greek to me.I think you're the person that replied to my post about the MD surgery. I was asking about it and you said it worked for you. I wanted to ask if mine could be a-typical because it started out with the lightening bolts about 5 years ago also. Now I still have the bolts when I touch my face or blow my nose etc. It has gone from that to hurting (burning) even after the bolts. I'm not sure if you could have had these symptoms. I'm really leaning toward the MD surgery but read it's works best on the a-typical symptoms. I have an consolation appt and trying to gather up questions I can ask. I know everyone on here would be able to help me out. Thanks again and I'm hoping you could answer some of these questions for me.

I've heard many times that the MVD surgical procedure only tends to work with typical tN and rarely will work with ATN symptoms.

I've also heard that John Hopkins is a very good hospital for the MVD procedure, but of course, there are other excellent places to go.

I developed ATN after dental work. My very painful symptoms are ongoing and so far it looks like they might be permanent. I went to a good neurologist. We tried many prescriptions. Either they didn't work, worked partially or they caused very bad side effects. I now use a compounded cream that I rub on my face where the dental work was done and this has helped me.

There are different procedures out there, but they all have risks associated with them.

As well as here, a very good website to go to is: www.livingwithtn.org. A good book to read is called: "Striking Back"

Wishing you much less pain, very very soon!

I had surgery at John Hopkins for my TN. Ever since than I have been pain free. I totally agree with you John Hopkins is good at treating patient with TN.