What if one just has to manage?

Hello friends,

It seems that most here are a candidate for, are considering, or have already undergone at least one MVD, Gamma Knife, or some type of surgical correction.

Aside from one other member, who I have not heard much from is the people like me, who have been given no hope of such things by their Neurologists. Mine has referred me to a head pain specialist, whatever that is. Even my Pain Management doc said to me verbatim, "I will be treating your pain for the rest of your life". At the time, I dismissed his comments as a way of collecting $80 or more a month from me for his practice indefinitely. However, after some study on the subject, I am beginning to think that he was speaking the truth.

I began with, and have only had ATN symptoms for years, since '03. It began on my right side, then moved to the left, as well. They became too severe to bear in November of '09, so I sought out a Pain Clinic, with only a suspicion of what my diagnosis would be. Without telling the doctor my suspicion, he diagnosed me that very visit.

Only now am I beginning to have the twinges which lead up to a shock like quality, bilaterally, possibly a pre-cursor of things to come. But, I hope not. It worsens with varying factors, but between doses of pain meds, my pain level can reach as much as a solid 8, I believe. The pain is of a severe crushing pressure, burning, stinging, throbbing quality in both sides of my face. My lower teeth throb. My jaws ache like crazy. My cheeks, tongue and palate, both upper and lower burn. Sometimes, even my lips hurt. Talking is difficult at times. If I eat, I know approx. 20 mins. later, I am going to be in the midst of a major flair up, which is going to make me wish I hadn't. I suppose I should also mention that I have moderate Scoliosis of the cervical spine, one bulging disc and several arthritic ones.

I have bought the book, "Striking Back", but I don't know that it was really written for ATN sufferers. I haven't run across any literature which is.

So . . . . pain management for the remainder of my life, I suppose, is what I am looking at? I wonder if there is anyone else on this site. who has had to wrap their head around this fact, who has any advice for me, as I am told by a credible source that surgery would not only probably not work, but may make my pain worse. If this sounds anything like you, I wonder if you have developed coping skills. I wonder if anyone has been prescribed a long acting medication, so that they do not spend their life clock watching, as I do, between doses of relief.

All of my life, and whenever I began posting to this site, I have been a fairly positive person. But, doctors don't like to deal with people like me, people with chronic pain which is non-fatal. I see a psychiatrist who doesn't understand why I am not being treated with stronger, longer acting pain medications. I asked her if one could maintain a career if treated as such. She replied, "well, I'll tell you that one of my patients is on very strong pain medication and is also the C.E.O. of a fairly large company", which was encouraging. But, because Type I TN seems to be more responsive to anti-convulsants and surgery, I get lumped in with the rest of the TN patients, when my case, as it is with other ATN sufferers, is not the same.

I want my life back so badly. I want to be a better Mom, housekeeper, an employee and to want to do things with my fiance. We are relatively young still, in our late 30s'. I am losing my ummph, and though I try to count my blessings, this feels like a slow march towards darkness.

Has anyone come down to a life of pain management? What has worked for you? Is there any quality of life left to be had? Are there any ATN patients, like me, of you who are well maintained on medications? Or is there a procedure I am overlooking which may help?

Any advice would be much appreciated.

Stef

P.S. I would try Yoga, but only for the psychological benefits. If it helped, great, but the pain is so severe, I am pretty sure it is beyond techniques like that. In fact, it is beyond Hydrocodone 10 mg. 6 daily now, which I was almost maintained on for quite awhile, as I am on a higher dosage of meds now. They are the only relief I've found which lasts for any amount of time. Reiki is great, but I cannot walk around with my head glued to my fiance's chest.

Ive had 2 mvds still pain takin3 percocet and 2 nucynta a day topamx stopped the painbuy made me very depressed and unbelievable crying spells so Im weaning off of tha for the 2nd or 3rd time....hopefully the new neurologist Im going to see can help and have an open mind with combining the opiods or I wouldnt have hope

8 years in pain

just my 2 cents haha

If I am understand you correctly, June, yes, 8 yrs. in pain here too. Without opoids for me, I see no hope. Really and truly. I wonder what nucynta is. Oxycodone is currently saving my life, but I only get 4 a day pain free bursts, and I think your 2 cents is more like “thanks a million”. I’m not alone.

Stef I was also told that surgery would likely make my pain worse and yes I am on the looooooooong term plan. Because of the fluid in my head from my tumor surgery I am not able to do Yoga or other sports or fly . . . but wanted to cause I think it would help. Maybe after my next MRI gives me the all clear I will try again. So far Methadone has been my only help and works better than the opiods did. I can be used long term and is easier on your system. So no MVD for me, to scary to chance the outcome after how far I’ve come.

Tracy,

I hope you don't mind if I cut and paste your comment below on our ATN group. For us last resort, inoperable people, this is very useful information. Thank you for sharing!

Sure but what about all the typo’s :slight_smile:

ps . . . I would give anything to glue my head to some handsome, kind, guys chest. It really does help. For now I have bean bags I heat up :)

Oh, I type-o all of the time, in case you haven’t noticed! What we deal with really does inhibit dating. I would not have even gone out with anyone on the course of meds I am on now. Dating would have seemed like the last thing on my mind. I firmly believe that if I had not been on a course of Methadone in the Summer of '09, that I would have even given my future husband a chance, because I probably would have been at home, on the couch on the computer with a heated rice bag. I use those sometimes. :slight_smile: Big hugs, Tracy! Hang in there. (hey, in defense of bean bags, they have no expectations!)

Hi Stef,

I don't know that I can really offer anything positive. I have suffered from TN for almost eight years now. In terms of TN pain over that time I have been fairly 'lucky' in that the pain has always been there, but really intense pain has been sporadic and usually short lived. However, the last 12 months have been a nightmare. To cut a long story boring, since last May, the frequency and intensity of my pain steadily increased until I was admitted to hospital twice in November. MRI shows I am 'OK'. So I am now on two different types of anti-convulsant medication (high doses), an anti-depressant and some other stuff. I am lucky in that my body and brain appear to cope fairly well with the medication and the only side effect I have is that I get a good night’s sleep (I don't mean to be glib). The regular blood tests that I now need because of the meds might tell a different story at some point in the future. That’s a rough outline of the background to my TN.

When I first came across this site, I had just been released from hospital and I was in a pretty delicate state, both physically and mentally. I was in no pain, but I was terrified, and I mean terrified, that the pain would return. I was afraid to move, go outside etc. All I was doing was spending hours on my computer looking for answers. I was basically afraid to live my live to any semblance of normality. It was a comment on this site that helped me greatly, I can't remember who posted it, can’t even remember the exact words, but it was along the lines of the old saying ‘you die if you worry, you die if you don’t’. At that point I was in serious danger of lying down to TN and that advice really helped. It’s probably easy for me to say that when I’m pain free. I might not be so positive if I was suffering. I have been referred to a neuro- surgeon, but don’t have a date yet. In my current state, I would not agree to any form of surgery if it were offered, but that view might change if my TN flares up again.

I have accepted that there is no cure for my TN, only verious forms of pain relief, and I'll have it for the rest of my life. I have also accepted that high doses of meds are now a normal part of my daily routine. My anti-convulsant medicine is Tegretol and Gabapentin.

Best wishes

Jim

Matt,

Make sure to emphasize in a nice way, when you get in the room with the doctor, the Level of you pain and what hasn't worked. You want your pain "under control", so that you can get back to your life.

Jim,

It is late now that I just looked at your message. There are points you made that I want to address. Look for my "real" reply later.

There is more I want to say to both of you. I will be back for with a better reply to both of you . . . .just dropping a note to say, I'll be back. Pain clinic tomorrow. Need sleep. Hoping for Methadone maintenance tomorrow. It is what my family and I have finally resigned to hoping happens. I am needed, as a mother of two and only child of two living parents who need me, but I've much more to say to you both. Thank you for replying to my post, for starters. . . .

Stef

Drastic, but it is the only thing I have ever tried which allowed me to live a normal life again.

Jim,

Wow! Although I did not have surgery, you describe what a lot of my life is like, afraid of the pain, afraid to go out , all of that. You can't get it out of your mind when it's all over your face. I have no insurance, so they do not test my blood for the concentration of meds. I wonder if this is something I should think about.

I will be in chronic pain for the next week because the pain clinic I go to would not replace lost medication. I believe it was stolen. Oxycodone was working for me, to a certain degree, but now, I must wait until the 10th of the month for them to refill the stuff. My youngest daughter turns 8 on the 9th of February. I don't know if I will be up to celebrating with her. Unmedicated my opiates, my Atypical pain is an easy Level 8.

I may be looking at trips to the E.R. in the coming week, for the first time.

Gabapentin, I take that. Neurontin, you know, it does take a little of the edge off, but not extremely discernably. I've had this since 2003, and I don't know what caused it.

From what I read about you, it seems that you are a Type I, or Classic TN sufferer. Are you not a surgical candidate? Maybe you don't like the idea? There are many more options open to Type I symptom sufferers.

I like that quote too, and I needed to ponder that tonight, as I prepare for this week.

Thank you for sharing your story. Wow! I hope you find your own personal miracle, some of us do, but in the meanwhile, it sounds as if you've honed your coping skills.

Stef

Matt,

Pain clinics are the best relief I've found, but WHEW! I found out the hard way today, no matter how undermedicated you feel, stick to their regimen. I was in pain twice more a day than I was medicated for, and on top of that, some of my meds, I believe were stolen. I wrote all of this to Jim below.

I can't say that they are the best places in the world, now that my compassionate practitioner is gone, but they are the best relief I've found for my symptoms, thus far. Everyone else wants to sweep the problem under the rug with, thinking that everyone fits into the same box and will be helped by the same meds and procedures. Real medication for Real Pain, that is a group I am joining. More info to this site on that later . . . .

I will seriously be thinking about you Wednesday. Let us know how it goes, ok?

Stef, I think I know how you are feeling. I suffer from ATN also and I too feel it is more difficult to treat. I have been dealing with full blown ATN for two years now. It gradually came on over about a years time in which I had to quit my job as a respiratory therapist and most days cry in pain untill finally being diagnosed. Then the pain doctor I was sent to immediately sent me to a surgeon for an MVD. I didn’t know any better so I had the surgery. Don’t get me wrong the surgery helps some people but is limited with patients with ATN. I wish they had tried to treat it with drugs first. I think I have almost come to terms that this is the way I will live the rest of my life. It teaches you not to take life for granted and to take one day at a time. I enjoy my family more but I don’t have little ones to take care of any more. That is hard enough when you feel well. I have some better days but the pain is always there. My neuro doctor sent me to a good pain doctor who understands. I am on neuroutin, lyrcia, percocet, ultram, and effexor. I was unable to take alot of the meds for TN due to stomach problems and some of these meds are for fibromyalgia which I also have. My meds may not help you, but when you find the ones that do take them religiously. My pain doc finally got that thru to me. If I can do it so can you. Let me know how you are…:slight_smile:

Hi, Juanita.

I have been meaning to reply to your post for some time now. It has been awhile since I have revisited this post. Full blown ATN. Yep, that’s me too! Red Lawhern posted something on our Atypical Trigeminal Neuralgia page, and if you are not already a member, consider this your formal and cordial invitation, which put the question in my mind as to whether TN can have a hand in causing Fibro and vice versa, if the chronic pain is left untreated. Chronic pain releases chemicals which, if I am understanding correctly, have an impact on and can inflame other parts of the nervous system.

I think I will ask for Lyrica, as opposed to Cymbalta whenever I meet my PM doc in the middle of next month. I have heard that it is very helpful for Neuropathic pain for many. My first choice, I’ve decided, would be to ask her to just go on Methadone maintenance, as it has been the only med I’ve tried since I’ve begun suffering which has allowed me to return to close to my former self. It is long acting and does not cloud my mind as much as it’s opiate cousins. Well, I know. This drug has a lot of drawbacks. I have discussed this with Lily, another member of our group who is on this med.

I wish that it had taught me to live life one day at a time. You sound so strong because, whenever the Roxicodone wears off, is to hurt and miss out on my daughters growing up. I simply cannot respond to them the same when the pain is severe. I try, but they can tell something is off. I get discouraged and just go back to hoping for a “fix”. I think I know what the closest thing to a “fix” to this problem is. My Dad, says he is going to need me around. I am the only Grandchild on both sides. I don’t want to let anyone down because of my chronic pain. My Dad is against using narcotics for pain, choosing to treat almost every condition holistically. But, he concurs that Methadone seems like the way to go for me. He says he needs me back up to full speed. I don’t wan

oops, I got cut off. I was saying that I didn't want to let anyone down, I am the only Grandchild on both sides w/ two kids to raise. I can't fall.

You seem kind and strong. If you have time, Juanita, write to me and let me know how you have been.

Hugs,

Stef

http://www.healthcentral.com/chronic-pain/coping-279488-5_2.html

http://www.healthcentral.com/chronic-pain/coping-279488-5.html

I'm not an addict. I'm tired of lifesaving medications being denied to Chronic Pain Patients. In fact, I'm angry.

Stef, I am more than angry for you.

Without the help of my medical professionals I wouldn't be able to cope and so I decided you need to move to BC and see my group of doctors that would be more than happy to help you. They know that low dose methadone can help and is the easiest on you long term, they also know that another fast active helper for break through pain can be included because I have opted to keep the 24x7 dose low enough to cope with life and I cannot tell what so ever I am on it, at all, except less burning pain. Why can they not do their jobs, you are a mother and want to be their for your family, not all drugged up, do they want to force you to be that way? Im not understanding why. I have had so much help and they check on me and care so much about my case. You need to get "new" help but I'm not sure how. I feel for you and would help if I could. On the other hand I am at the end of my rope with my x trying to start problems with me every chance he gets, I can't stop defending myself to him and not sure why I feel I have to or why I choose to waste any energy on him. He likes it and does it on purpose and with a smirk I wish I could remove from his face in my own way. So that's my current struggle. I wish he was suffering and not me, how could someone be so shallow and self centered to not be their for their wife of fifteen years in their time of need and only care about themselves. At least I have the support from his own family who is also overdisappointed in his actions for the last decade. Man I wasted so much time. I'm gonna get though this and so will you. I will pray for more help to come your way and strength to continue to be the best you can. xox

Tracy

Hello, Tracy,

You really are such a kind person. I appreciate that very much. You go through so much and still have time to care for others.

(laughs)

I've joked before that it would be nice if I COULD move to BC because of this.

Your ex sounds like a very weak and selfish man. I wish that you weren't going through this. If people could know what we feel, perhaps they would have an entire new perspective on life. Maybe that is why, even though TN and ATN patients get their dander up at one another at times, and I don't like it because I saw it a couple of times, not happening to me personally, but happening, I wrote a discussion about it. It rambled because my daughter was trying to get me to take her somewhere whilst I was trying to finish it, and my fiance was siding with her. I digress.

Ok! You SHOULD NOT DEAL W/ THIS . It is bad for you! I know it is hard, when you are tied to people. The in-laws from my widowed marriage were sort of giving me a fairly hard time for awhile, after a wonderful 21 yr. friendship. I guess they just couldn't handle seeing that I had moved on and was happy with someone else. I guess it was hard for them and they took it out on me. My eldest daughter will have nothing to do with them now because of this. I do not like it. It breaks their heart. They have lost a son and a Grandaughter, and there is nothing I can do about it! But, they put me through a lot emotional problems for awhile. They got tired of my condition, even though my mother-in-law is a chronic back patient on so many medications that she barely knows the names of others sometimes, and my Father-In-Law has two daughters who are estranged because of his cold treatment of them in favor of his two sons, well one son now, who wanted me OUT of the family! I think the kicker was that almost 5 yrs. after my hubby's death, my little girl pic was right up there beside his in their house. Well, my bro-in-law,