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Old 12-22-2003, 06:19 PM   #1
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Does nerve pain get worse without treatment?

I had surgery and eight weeks later (around the first of June) I experienced aching all the time and burning a couple times a week in my face. As the weeks went by the burning became worse and more frequent each week, until I told my surgeon "I think I am experiencing nerve pain in October." I had been complaining since June about my pain. He put me on Neurontin. I am taking 900 mg three times a day. I experienced minimal relief with that dose. I went to a neurologist a week ago and he added Keppra 500 mg twice a day. I am a little better, but I still having burning in my face all the time. The burning is just not as severe. I feel as if my pain got much worse over the months not being treated. Does anyone know if nerve pain gets worse if not treated aggressively at the beginning stages? Does nerve pain from surgery get any better? My neurologist told me that nerves repair at a millimeter a day. I think he is suggesting that my pain might get better. Any insight, suggestions or thoughts appreciated.

 
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Old 01-23-2004, 06:05 PM   #2
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Re: Does nerve pain get worse without treatment?

Quote:
Originally Posted by Michelle W
I had surgery and eight weeks later (around the first of June) I experienced aching all the time and burning a couple times a week in my face. As the weeks went by the burning became worse and more frequent each week, until I told my surgeon "I think I am experiencing nerve pain in October." I had been complaining since June about my pain. He put me on Neurontin. I am taking 900 mg three times a day. I experienced minimal relief with that dose. I went to a neurologist a week ago and he added Keppra 500 mg twice a day. I am a little better, but I still having burning in my face all the time. The burning is just not as severe. I feel as if my pain got much worse over the months not being treated. Does anyone know if nerve pain gets worse if not treated aggressively at the beginning stages? Does nerve pain from surgery get any better? My neurologist told me that nerves repair at a millimeter a day. I think he is suggesting that my pain might get better. Any insight, suggestions or thoughts appreciated.

HI,
I had neck surgery. The surgery was 5 hours and followed the coratid artery. To remove this birth defect it was lengthy and invasive. I have nerve damage and the nerves have grown together in some locations causing neuromas. They had to be removed. The pain was quieted down by killing some of the nerves totally. The sensation from nerves being dead is not a nice feeling. I have been on many meds and had botox shots to relax muscles in that area.
Pain is terrible and I wish you the best of luck. I am not sure there are to many cures for nerve damage. I am also not sure it will get much better. I am into this for 3 years now.
Good luck........

 
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Old 01-25-2004, 02:44 AM   #3
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Re: Does nerve pain get worse without treatment?

Quote:
Originally Posted by Laura T.
HI,
I had neck surgery. The surgery was 5 hours and followed the coratid artery. To remove this birth defect it was lengthy and invasive. I have nerve damage and the nerves have grown together in some locations causing neuromas. They had to be removed. The pain was quieted down by killing some of the nerves totally. The sensation from nerves being dead is not a nice feeling. I have been on many meds and had botox shots to relax muscles in that area.
Pain is terrible and I wish you the best of luck. I am not sure there are to many cures for nerve damage. I am also not sure it will get much better. I am into this for 3 years now.
Good luck........

Thank you for responding to my question. I really had wondered about it for quite some time, but I havent been back to the neurologist to ask any questions since he prescribed the medications. I doubt I could have my nerves killed since they are in my face. Isn't this one of the most horriable afflections you can imagine? I remember being right out of LPN school and working for a doctor, I had this nice lady patient come into the office. She told me of nerve damage/burning in her face she was experiencing as a result of a root canal. I remember thinking that she is was in one of the most awful situations I had ever heard of, because she told me they could do nothing for her. I guess this was before Neurontin and other medications.

I am sorry to hear you underwent such an awful surgery for a birth defect. I hope your situation eases with time and gets better. I agree about relief since it has been almost one year for me. My surgeon would not give me a percentage guess on if it would get better or not for me. I feel so bad for all of us undergoing these similar situations. Have you found any medications or treatment especially helpful?

Thank you for responding, because your response is the only one I have received.

 
Old 01-25-2004, 08:23 AM   #4
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Re: Does nerve pain get worse without treatment?

Michelle, I also suffer from facial nerve pain from a nerve damaged during dental work. I am not sure if the nerves heal but my neurologist also makes comments that allude to the nerve healing someday but that it takes a long time. He is also heavily into the theory that the nerves are misfiring and that can be stopped with the use of certain drugs that affect our neurotransmitters. Neurontin is his favorite for that. He believes serotonin helps Neurontin do its job. Serotonin is produced while sleeping. He has added low dosages of serotonin producing medications to the Neurontin - Lorazapan at night and Lexapro in the morning ... I hate to take them but am giving this a try. I have gotten over my resistance to meds and have put myself into the hands of the medical professionals at this point. I am to early into the new drugs to know if it helps but will keep you posted. Good luck to you.

 
Old 01-25-2004, 03:14 PM   #5
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Re: Does nerve pain get worse without treatment?

Thanks for responding Ann123 to my post. I am sorry you are experiencing pain from dental surgery. I wondered what kind of procedure you had done? I underwent bilateral arthroplasty for TMJD. I clench/grind my teeth at night. I had stretched out the ligament attached to the articular disc. I had to have the ligament cut and pinned in place. An incision was made right in the front crease of my ear. It is visible to me, because I know there was no crease in that area but invisible to others. Sorry to go on about my ordeal. I have been thinking about trying Lexypro. My neurologist offered to take it. I was afraid of the serotonin adrenalin affect. I thought maybe it might make me grind my teeth at night. It is a listed side effect. Although, side effects are suppose to be rare with this medication. It is suppose to be one of cleanest medications now. Please do keep me posted.

Thanks for your input!
Sincerely,
Michelle

 
Old 01-25-2004, 08:54 PM   #6
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Re: Does nerve pain get worse without treatment?

Quote:
Originally Posted by Michelle W
Thanks for responding Ann123 to my post. I am sorry you are experiencing pain from dental surgery. I wondered what kind of procedure you had done? I underwent bilateral arthroplasty for TMJD. I clench/grind my teeth at night. I had stretched out the ligament attached to the articular disc. I had to have the ligament cut and pinned in place. An incision was made right in the front crease of my ear. It is visible to me, because I know there was no crease in that area but invisible to others. Sorry to go on about my ordeal. I have been thinking about trying Lexypro. My neurologist offered to take it. I was afraid of the serotonin adrenalin affect. I thought maybe it might make me grind my teeth at night. It is a listed side effect. Although, side effects are suppose to be rare with this medication. It is suppose to be one of cleanest medications now. Please do keep me posted.

Thanks for your input!
Sincerely,
Michelle
Hi Michelle, Ann and Laura,

I too suffer from facial neuropathy. Mine started as a porcelain veneer on my front tooth, followed by severe pain, 2 root canals, an apicoectomy, an extraction, finally diagnosed with osteomyelitis (a jawbone and marrow infection), was on IV abx for 11 weeks with 2 debridements (scraping of bone and removing dead tissue/bone) went through Hyperbaric Oxygen Therapy. I have been done with this for about 8 months. Except the HBO ended 2 months ago. It has been "deduced" that I am suffering with neuropathy due to the infection, trauma and surgeries. I thank g-d I beat the infection, it never spread or became systemic, causing horrible illnesses and possible death. So, with that said, I am lucky. BUT, I have pain every day. Neurologists do tell me that this takes a long time to heal that sometimes there is damage to the nerves and to the sheath (myelin - that is a protective covering on the nerve) - and yes, it grows so slowly, but it does grow. I think that facial pain is maddening. I meditate, am starting yoga, get massages since pain refers to my neck, head and shoulders. I am also giving a LOT of consideration to the glutine removal from my diet. I don't know much about nerve blocks, and will research more. I am on Lexapro and Ativan and will be adding Neurontin to help get rid of this pain. Sometimes our brains become "wired" an actual chemical change in the brain, that sends pain signals. I think that it is NOT in the mind, however, I think the mind CAN do miraculous things, especially when the body is in top form. I hope to continue our correspondence. All of you are very special people,

Trying...
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Old 01-26-2004, 07:36 AM   #7
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Re: Does nerve pain get worse without treatment?

Dear Trying,

Thanks so much for sharing your story. I have been wondering if anyone else was suffering from anything similar. Unfortunately the answer is yes. I am so sorry you have been through some much. I hope things continue to get much better for you. The Neurontin has helped a lot with my pain, but I had to add another medication called Keppra. It seems many people are on Lexapro with nerve pain. It must work well. It is something to consider.

I have been wanting to go back to work part-time and wondered if any of you gals are able to work?

Thanks,
Michelle

 
Old 01-26-2004, 07:54 AM   #8
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Re: Does nerve pain get worse without treatment?

Quote:
Originally Posted by Michelle W
Thanks for responding Ann123 to my post. I am sorry you are experiencing pain from dental surgery. I wondered what kind of procedure you had done? I underwent bilateral arthroplasty for TMJD. I clench/grind my teeth at night. I had stretched out the ligament attached to the articular disc. I had to have the ligament cut and pinned in place. An incision was made right in the front crease of my ear. It is visible to me, because I know there was no crease in that area but invisible to others. Sorry to go on about my ordeal. I have been thinking about trying Lexypro. My neurologist offered to take it. I was afraid of the serotonin adrenalin affect. I thought maybe it might make me grind my teeth at night. It is a listed side effect. Although, side effects are suppose to be rare with this medication. It is suppose to be one of cleanest medications now. Please do keep me posted.

Thanks for your input!
Sincerely,
Michelle
Hi Michelle, I had root canal, then extraction. The doctor shot the anesthetic directly into my nerve -not a good thing. I do clench/grind at night - which started after the procedures. I have tried a lower TMJ splint for 3 months - since my pain is largely in my lower teeth that did not feel good and I gave up on that. I now wear an upper night guard at night. I have read that TMJD and trigeminal nerve pain are often co-existing conditions. The trigeminal neuralgia came first for me -one of responses to it was to begin clenching. I now also have a popping jaw and neck/shoulder pain. My TMJD is believed to be muscular and I haven't had much luck with treating that. My neurologists recognizes that I have it and said on my next visit he was hoping to be able to prescribe massage therapy - I asked why he was waiting and he said it wouldn't do me any good yet until the muscles loosened up some more. sounded odd to me but he's the doc. Are you doing anything to treat the TMJD anymore?


I asked when I started the Lorazapam (Ativan) at night a couple of months ago if it would increase the clenching-he said no that it might even help. It puts me into such a deep sleep I have no idea if I am clenching now. I don't wake up any sorer though. I am also concerned about that listed as a side effect of the Lexapro which I just started in the mornings 4 days ago. But I am a clencher anyway and I am hoping that if these drugs help relieve pain/tension/anxiety maybe it will help with the clenching. So far, beating the clenching has proven to be a tough task. Do you clench/grind now? So far I have tolerated the Lexapro fine- was very drowsy the first day and a little digestive issues but hoping that will pass. I think I actually feel a little better already. How is the Neurontin working for you? I have been on it about 6 months - and am very confused about whether it works. It has never relieved the pain entirely. And I still get bad flare-ups. The doctor just keeps upping the doses saying my pain cycles are peaking (usually before my periods) and he needs to get it high enough to reach the peaks. I hate all these drugs and it took me a long time to give in and start taking them. I worry about addiction, side effects, etc. However, I also worry about what untreated unrelenting chronic pain will do to me. Sorry this got so long. Good luck to you with your treatment - I hope you find the proper treatment soon -it sounds like you have been through a lot and I sympathize. I will keep you posted on how the Lexapro works for me, take care.

 
Old 01-26-2004, 08:54 AM   #9
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Re: Does nerve pain get worse without treatment?

[QUOTE=tryingtofeelgood]Hi Michelle, Ann and Laura,


Hi Trying, yes I have read your story on the dental board. I am so sorry that you have been through so much. I was hoping all the ostemylitis treatments would be the end or your ordeal.

I agree it is not in my mind - I had rarely even been sick in my life before this began and had no stress/anxiety issues. Thankfully my doctors have not been the type that suggest it is "all in my head". But the theory is that chronic pain can affect our chemical make-up - putting us in a state of adrenaline overload (the classic "flight" response form the caveman days) thus these drugs to fight adrenaline and increase serotonin. And the Neurontin is supposed to stop the misfiring of the nerves. Are the Lexapro and Ativan (Lorazapam) helping you?- how long have you been on them? - that is what I am taking as well. Though I just started the Lexapro. I was on the Neurontin alone first but that isn't enough apparently. How about the massage therapy? I am supposed to be getting a prescription for that soon. My pain also is sometimes in my neck and shoulders though my doctor did not say it was referred, he said it was a separate condition from clenching/and or tension. Do you find anything increases or decreases your pain? Have you tried moist heat? That gluten free diet sounds very difficult. I wonder about that as why would I suddenly become allergic to something right after dental trauma?

I like your comment it has been "deduced" that you have neuropathy. It's like how do they know for sure-that is what is causing me worry sometimes-are they missing something? It's not like they ran any tests to prove it. Yet my neurologist remains absolutely positive this is what it is.

I saw your question on your other posts on websites to get more information.
We can't really list them on this site but searches on trigeminal neuralgia and atypical facial pain should get you started. I will look at my notes and see what helpful things I can convey as I have already researched this a lot.

Take care, keep us posted. This is indeed a strange maddening thing we have and hopefully we can learn from/support each other.

 
Old 01-26-2004, 09:03 AM   #10
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Re: Does nerve pain get worse without treatment?

Quote:
Originally Posted by Michelle W
Dear Trying,

Thanks so much for sharing your story. I have been wondering if anyone else was suffering from anything similar. Unfortunately the answer is yes. I am so sorry you have been through some much. I hope things continue to get much better for you. The Neurontin has helped a lot with my pain, but I had to add another medication called Keppra. It seems many people are on Lexapro with nerve pain. It must work well. It is something to consider.

I have been wanting to go back to work part-time and wondered if any of you gals are able to work?

Thanks,
Michelle
Hi Michelle,

I do work part-time (3 days a week) in accounting. I have had this job for many years and it is not too stressful because I know it so well. And I work with a great group of ladies who I enjoy spending time with. I often find that my job distracts me from thinking about the pain. However, I am usually exhausted at the end of the work day. And my husband works for the same company so I do not have to drive myself to and from work.

 
Old 01-26-2004, 10:23 PM   #11
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Re: Does nerve pain get worse without treatment?

Quote:
Originally Posted by Michelle W
Dear Trying,

Thanks so much for sharing your story. I have been wondering if anyone else was suffering from anything similar. Unfortunately the answer is yes. I am so sorry you have been through some much. I hope things continue to get much better for you. The Neurontin has helped a lot with my pain, but I had to add another medication called Keppra. It seems many people are on Lexapro with nerve pain. It must work well. It is something to consider.

I have been wanting to go back to work part-time and wondered if any of you gals are able to work?

Thanks,
Michelle
Hi Michelle,

Thanks so much for your reply Unfortunately, I have found other people suffering too. I am sorry you have pain in your life. Perhaps it will go away. I believe it can, and hope it gets better for you as well. I was put on Lexapro when I became depressed and anxious. I had an infection eating my jawbone and marrow for 4 months, with nobody able to diagnose it. I am glad to know that Neurontin seems to work for nerve pain too. I did not know that Lexapro worked for that, thanks for the info. I find Ativan helps me too. Pain and anxiety seem to come together sometimes, one comes first and yada yada. Just don't want to be on these meds for too long.

I have not been able to work at all. If you are able, go girl! It will help keep your mind busy. I am at home and healing. I paint and play scrabble - reading is difficult, sometimes anything but sleeping is difficult.

I wish you the best and look forward to continuing talking with you
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Old 01-26-2004, 10:42 PM   #12
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Re: Does nerve pain get worse without treatment?

[QUOTE=Ann123]
Quote:
Originally Posted by tryingtofeelgood
Hi Michelle, Ann and Laura,


Hi Trying, yes I have read your story on the dental board. I am so sorry that you have been through so much. I was hoping all the ostemylitis treatments would be the end or your ordeal.

I agree it is not in my mind - I had rarely even been sick in my life before this began and had no stress/anxiety issues. Thankfully my doctors have not been the type that suggest it is "all in my head". But the theory is that chronic pain can affect our chemical make-up - putting us in a state of adrenaline overload (the classic "flight" response form the caveman days) thus these drugs to fight adrenaline and increase serotonin. And the Neurontin is supposed to stop the misfiring of the nerves. Are the Lexapro and Ativan (Lorazapam) helping you?- how long have you been on them? - that is what I am taking as well. Though I just started the Lexapro. I was on the Neurontin alone first but that isn't enough apparently. How about the massage therapy? I am supposed to be getting a prescription for that soon. My pain also is sometimes in my neck and shoulders though my doctor did not say it was referred, he said it was a separate condition from clenching/and or tension. Do you find anything increases or decreases your pain? Have you tried moist heat? That gluten free diet sounds very difficult. I wonder about that as why would I suddenly become allergic to something right after dental trauma?

I like your comment it has been "deduced" that you have neuropathy. It's like how do they know for sure-that is what is causing me worry sometimes-are they missing something? It's not like they ran any tests to prove it. Yet my neurologist remains absolutely positive this is what it is.

I saw your question on your other posts on websites to get more information.
We can't really list them on this site but searches on trigeminal neuralgia and atypical facial pain should get you started. I will look at my notes and see what helpful things I can convey as I have already researched this a lot.

Take care, keep us posted. This is indeed a strange maddening thing we have and hopefully we can learn from/support each other.

Hi Ann,

Thanks so much for your kind reply. I was also hoping the osteomyelitis was the end of my ordeal. It was not to be and now it is what it is. It is not good, so I will have to do what I can to help make it better. I have things to do in this lifetime! A lot of things! : ! OK, better now.

Yes, the neurontin is supposed to help with the nerves firing correctly. I did not know about Lexapro as being used for neuropathy. I happen to really like this medication. I have no side effects, well I've put a few pounds on, but I'll take that. The first week I was on it, I had terrible headaches and nausea. Now, nothing. I find myself less depressed and able to shake anxiety and depression quicker -which means less stress and utlimately, less pain. This is a good thing. I have been on it for a year or so now. Ask anything you wish, if you have more questions. I do know the seratonin levels are important - especially when nerves are concerned. The Ativan was prescribed to me 1 year ago when I was unable to take pain meds and having horrible withdrawal from morphine. I've been on it since. It is addictive, and hard to come off of, but I am not addicted- however, i don't intend to come off of it anytime soon, unless Yoga is a miraculous thing - and I can handle the gluten free diet. I wonder if it is for "all" types of neuropathy, particularly facial. I do not clench my teeth any more/less than I did pre-Lexapro. It's a rare thing. I know you are a clencher - I'd still give it a try.

I use moist heat on my neck - never at the site. I don't go near my site - and I think that is the thing that keeps the pain down. That, and not talking, moving my face, wearing a bite plate (bite has shifted from surgeries and bone removal) and smiling. So now people think I am a bit^*, which I am not. I also have no front tooth so public smiling is out of the question anyhow Not really - I'm over it., well sort of.

I too have not been ill before. I wonder if you have a lawsuit going? If OK to ask. I hope to continue our discussions. I appreciate any information you are able to post here. I wish we were able to email with each other. It makes no sense. The moderators must be very afraid of the competition, and they don't need to be. This site is hot - a lot of hits are made here first and people always come back. Anyhow, I wish you peace.

In health, Randi
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Old 01-27-2004, 11:49 AM   #13
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Re: Does nerve pain get worse without treatment?

Thanks so much for sharing your stories. I so have been searching for someone with similar stories. I was beginning to think that I was all alone with my weird story and circumstances.

Intially, I felt my surgeon was blaming me for my circumstances, because I tend to be a high stress person. Now he also agrees it appears to be some kind of nerve damage. It is hard when you have surgery, and it doesn't work out; but then to have your doctor sort of blame you makes it so much worse. I have heard this happening to other people. I don't think this is a rare incident.

Although I hate to hear that you all are having such a hard time, I am glad that you decided to share your pain and suffering with me. It has helped me tremendously- More than you all will ever know.

Ann, please let me know how the Lexapro works, and if it effects your grinding. I am really wanting to try it. My medication I am taking now Abilify which makes me so tired. A few weeks ago I was taking Geodon, which made me nauseated and like I was drunk. I had to go home and pass out from it. It was like I slammed a 12 pack! I got off it.

Thanks.

 
Old 01-27-2004, 07:24 PM   #14
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Re: Does nerve pain get worse without treatment?

Hi Randi,

Hope you are doing okay. I do like the Lexapro so far. (5 days on it)Didn't really think I was depressed; except during PMS. But trips to different doctors, getting your hopes up, then having them be confused and just sending me on to someone else - all that definitely had to cause anxiety. How can dealing with this type of thing not play havoc on ones emotions...hence the Ativan and Lexapro. Both of which I like. Neurontin has proven to be relatively easy to take as well; tiredness at first which passes. I am allergic to ibuprofen and sulfa so not all drugs agree with me - I am glad I found some I can take. Are you planning to start taking something like Neurontin soon? Are you working with a neurologist? Have you had a MRI? Are you taking yoga classes or self taught? I'd like to try that Did you say you also get massage therapy? If so, how do you like that?

My doctor told me to put the moist heat bag right in front of my ear and hold it all along the side of the face to my chin. This is wear the trigeminal nerve runs. It does not make it hurt more for me, it feels good. I use one of those bags with rice you heat in the microwave someone made for me. I agree- mouth movements, talking, smiling etc makes the pain bad. Very hard to avoid these things though. Where exactly is your pain? What does it feel like?

No I do not have a lawsuit going. I've heard it is very difficult. Are you pursuiing that at all?

Scrabble, huh? One of my favorite games.

We will both get better, it will just take time. You have been through more than myself without a doubt, again I am so sorry for all the pain you have endured. Take care of yourself, continue to be strong.
You WILL have a chance to do all those things you still want to do in this lifetime.

Ann

Last edited by Ann123; 01-27-2004 at 07:49 PM.

 
Old 01-27-2004, 07:47 PM   #15
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Re: Does nerve pain get worse without treatment?

Hi Michelle,

Well if it makes you feel any better, I am NOT a high stress person at all and my life was very easy and happy-go-lucky and nerve damage happened to me. It can happen to anybody, stressed or not. But yes I have had one oral surgeon who I didn't like tell me to reduce stress, blah, blah - I told him the only stress I had was this pain and the failures I'd faced in getting helpful treatment. I do find that now that I have the pain stresss aggravates it -but it did not cause it!

As far as being alone in your symptoms - no, not at all, I have found many many people with facial pain, trigeminal nerve pain, etc. There are many stories on the internet. Are you working with a neurologist used to treating this condition? Mine gets most of his referrals from oral surgeons. He has many patients like us.

I like the Lexapro so far - 5 days into it. Think it is helping me feel less pain, but I will give it more time to know for sure. Tired the first day, that was it. I do not think I am clenching more- I am not waking up sorer. I take it in the morning and Ativan at night. I am not familiar with Abilify or Geodon - are they in the same class as Lexapro? If they are then you may have same trouble with Lexapro. I know some people have too much drowsiness and nausea with it. I hope you can tolerate it cuz it seems people who can love it.

I'd like to hear more about the kind of pain you are experiencing if you feel like writing about it. Compare notes type of thing.

It would be so good to hear a recovery story from one of us one day. And it will happen, we just have to be patient and look forward to that day coming. Stay strong.


Take care,
Ann

Last edited by Ann123; 01-27-2004 at 07:49 PM.

 
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