So as a day goes this was one of the worst

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after being beat down by cold and wind, and rain for days it got too much. I have pain meds at home and even they wereen't helping so I went to the Veterans Affairs hospital since I'm retired Navy as a first resort. I'm not racist but if you vcan pronounce one of the people who works there last name I'll dole out cash. It's like they discriminate against hiring Americans. Which wouldn't be something to complain about except they don't know their ass from a hole in the wall. The first doctor I ever saw there brought in a book and looked up TN in front of me. So much for instilling confidence. So he says I'll give you Ultram, it's a great painkiller for this. Oh, this is after a quick attack that caused me to bite through my cheek and blood was everywhere. Now I've had this for 14 years and know this is bullshit and call him on it. I asked why don't you just prescribe some air or some tic tacs. It's not like I care anymore about pissing off the VA health care system, they are worthless. I feel sorry for out veterans. If even one gets treated like me and I'm sure they do then it is so sad. The second doctor is trying to proclaim to be a TN expert because he apparently read some article on rhitzotomy. He's like that's your only option. I told him he was full of shit and would bet everything I have my knowledge of TN outweighs his ten fold. His knowledge did not go beyond rhitzotomy but he was such a cocky piece of shit I wanted to strangle him and I called him on it. I asked if you're such an expert on this rare disease why are you not working for a place that makes a difference instead of a Roanoke ER. No answer naturally, he just walked out and it's good he did.

They said if you want help go to an ER if you need help all the while I'm sitting there thinking I'm in one. But for the sake of not having violence break out I leave and go to a real hospital. One with all American(again not racist, just an observation) doctors who what do you know. They sit down and take time to see what's going on with you and while they didn't get me pain free which is really an impossibility anyways they got me a whole lot better than I was. If I had got it earlier it might not have been so bad but after 2 shots of dilaudid and one of valium plus stuff to keep me from getting sick it brought it down quite a bit. The nurse when administering the dilaudid asked why I started crying. I said it upsets me that it takes something like this to make my day not suck which is true. It is relieving but upsetting at the same time. I'd just rather have a normal life where this wasn't even an issue. It days like this that make you wonder, why do I keep fighting this. BUt I do, and I will.

So now I'm home, It's 3 in the morning. My pain is somewhat back but not as bad as it was, and my cheek is bitten through. What a night. My faith in health care is diminished even more than before and that's saying a lot. I need sleep although I know I won't get it. To bad in Virginia if you smoke pot you are the equivalent of a child rapist. How dare you smoke such a horrible drug? They way over react to such things here. It's like they don't realize I'd probably get it if I lived anywhere other than this hell hole. Sorry, done ranting. Hope everyone else is well. Good night.

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Matthew,

I am sorry you are having such a rough time. I know some days are worse than others and I wish there was an explanation for why. Have you considered another MVD? I noticed it has been a long time since your last MvD? Can you remember if it helped at all?

I try to look at my pain by weeks. Was this a better week than the last several? It is very difficult and I know you are having worse pain than I have had for some time. Keep trying different meds or try the same med you tried awhile back. Maybe it will help this time.

I pray for all of us with this condition and for all of those who are out there suffering who don’t have anyone in their lives who understand. I hope you get better and tomorrow is a better day.

Liz

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Hi Matthew,

Yeah, this can really suck, right? I'm sorry you are going through this and feeling so angry. Its hard when people dont understand. Have you tried seeing a therapist- it can do wonders. I go every week, and am able to vent and gain strength. Also, what medicines are you taking? Sometimes they cause agitation and can really mess up your balance. I'm on Cymbalta now which helps the TN and depression/ anxiety. I also take ativan for anxiety, which helps reduce the pain, ironically. It wouldn't hurt to see a TN specialist in the area to review your meds and also see a psychiatrist (who knows prfessionaly what the meds do to your mental health). I do this, and it extremely helpful. Also, its great to have these dr's becuase they can help add to any disability claims.

Take Care!

Sara

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Hey Matthew. I feel very much like you right now. I go to the doctors and no ones knows what the hell is going on. I wished I lived closer to you. If nothing else, I’d take you to the doctor and while you were having pain, I’d chew their ass on your behalf and hold your hand. And if I was having pain, you could chew my docs ass and hold my hand. Take care my TN friend. I will pray for your comfort as we battle thru this damned mess!

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Also, on the TNA site, they have a page that you can print to take to the ER to give to the dr’s. I cant find it b/c the site is updating, but will post it when its available.

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Know how you feel, there is no pain on earth like this. My husband is wonderful, but he can't understand it.He does try.

I had MVD in 2007 after 8 years of pain. Then 2 years pain free, how I loved those years. Then TN returned, but it is different this time. More of a burning aching pain, that flares up into my deaf ear. ( my MVD left me deaf in the left ear ) It drives me mad.

When the pain is bad think I would do anything to get relief.

At least I am 64 now, not a young person. You should be enjoying life.

Margaret

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I had my MVD done at the Portland Oregon VA hospital. Compared notes with others who had their MVD surgery at civilian hospitals and it was decided I by far got the better care. My neurosurgeon was from Brazil and half the nurses that took care of me came from Russia, Ukrane and various places in Africa. Was not as wild about going to the ER for help, but found help when needed. I think what make the world of difference was the fact the VA here is a arm of Oregon Health and Science University (OHSU) OHSU is the leading TN hospital in the Pacfic NorthWest and I beleve it overflowed into the care I got at the VA as many of my doctors came from OHSU. University of Florida, which oversees the VA hospital in Gainsville Florida has a great TN program as well. If you need to stay at the VA, could you possibly travel for care? Just a thought. May not work, but thought I would throw it out there. It is hard when you have to stay with the doctors assigned to you and they are not helping.

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Hi Matthew,

Wow! What an ordeal, man!!!!! I'm so sorry you had such an awful night! Shots of Dilaudid, huh? Well, they give it to cancer patients with intractable pain. They send them home with it! But, our pain is not potentially lethal, unless we make it so, and WE WON'T!!!!

When I am in need of pain medicine, I wish I was a man. I think they will administer it more readily to a guy than a woman. I admire that you let them know that your knowledge on the subject of your disorder is superior to theirs. Mine is superior to any doctor I have seen. They know little of the subject. In fact, I had one pull a manual out in front of me on the subject. She was a wonderful nurse practitioner. But, she lost her job, and I think it is because she was prescribing things that ACTUALLY WORK!!!!! The Pain Management practice she was associated with may be afraid of the DEA. They do pill counts, and drug screening at almost every visit now with both me and my friend who goes for her carpal tunnel, as well as pain associated with an automobile accident.

I have read most of your discussion posts, and I admire your candor on this subject. You do not sugar coat anything. TN in all of it's forms is truly a heinous condition, and you depict it accurately. There are days when one feels like giving up, but have you read some of the success stories?

I want MVD sooooooo badly. In case I haven't told you before, I am Atypical, bilateral and in intractable pain, except for my 15 mg. x4 daily and Diazepam 10 mg. x daily. I take the Gabapentin and Cymbalta which I am prescribed, but I can't tell that they do much. If the MVD doesn't work, I think I will be seeking Methadone maintenance. It is the only thing I have ever tried which allowed me to live the active and inspired life which I lived in my Pre-ATN days. People ask me why I am not high from the Oxys and the Valium all of the time. I don't know. They just don't work that way for me. They just bring me back to normal for a little while, that's all (well, and sometimes make me a bit sleepy, but nothing coffee can't handle).

I am curious why you bit through your cheek. I wonder if the pain causes you involuntary oral movements.

At any rate, you are right about doctors, I suppose, and I do not mean to be negative, but VA or not, they don't seem to get it. With foreigners, it seems as if there is a communication break down. I am not prejudice in the outer world, though.

I certainly hope that this one is a much better evening for you.

Stef