Exhaustion comorbid with pain

Hi, everyone. I hope you're all having a pain-free day!

I have been experiencing something I'm confused about, and I'm hoping you lovely kindred souls can help me figure it out.

I have days when I have pain, and I'm able to function. I take a tramadol and on occasion a vicodin, and I wear an ice pack on my head. And I can get a lot done.

Other days, though, I get a wave of exhaustion and wooziness along with the pain. On those days, if I take a vicodin (and sometimes even if I don't), I will sleep most of the day.

The exhaustion isn't coming from the pain; it's along side it. Do any of you experience this?

Also, my pain is usually in my right ear, jaw, and cheek. It often feels like it might if you had a pebble in your shoe and it had been rubbing, or if you had had a splinter for a while ... kind of burning, but like there's an external source causing it. My ear usually has a stabbing pain. Do any of you experience this?

One final question ... I'm having jaw soreness on the other side. It's just light, like the muscles are a little tired. Does this sound like it could be TMJ disorder?

Thanks ahead of time, everyone. I could really use your input.

Beth

Hi Beth, yes, I have had exhaustion with the pain. It often seems to go hand in hand for me. I was having the stabbing headaches which seem to have greatly been controlled with a low dose of Nortriptyline. It has been quite a blessing.

Hi Beth. In the nearly 20 years I've been talking with thousands of chronic face pain patients, I've heard the combination of symptoms you describe fairly often. The exhaustion could be cycling through as a side effect of meds or sleep disturbance. With the powerful meds you're on, both are possibilities. And the pain in your ear could be another form of neuralgia called "geniculate" or "nervus intermedius" neuralgia. At a distance, it's difficult to know with precision. A properly trained neurologist should be able to do a differential diagnosis.

As for the jaw soreness, several factors could be involved. Many pain patients clench their teeth, and thus tire the jaw muscles. Alternately, it's possible that you're having precursor symptoms of an emergence of the same form of pain on both sides. Bilateral TN is quite a bit more common than most published sources indicate. TMJ should be considered a distant third possibility, because its symptoms are so diverse and imprecise. A lot of dentists diagnose TMJ when they don't know enough about chronic neurological pain.

I hate to be the bearer of potentially bad news. But these alternate explanations for your symptoms need to be discussed with a medical professional.

Go in Peace and Power

Red Lawhern, Ph.D.

Moderator and Resident Research Analyst

I've heard of using nortriptyline and amitriptyline. I take Zoloft for depression/ anxiety, so I wonder if I could take one of those, or if I'd have to go off the Zoloft? I really need to find a doctor who understand this damned disease.

shadow2 said:

Hi Beth, yes, I have had exhaustion with the pain. It often seems to go hand in hand for me. I was having the stabbing headaches which seem to have greatly been controlled with a low dose of Nortriptyline. It has been quite a blessing.

Red, thank you for the thoughtful reply. My husband was thrilled that you, with so much experience, took the time to respond. I told him this is how the forum works, and he learned what a blessing it is to be able to communicate with others who know and understand.

Well, I have to say that I had to take the night to process what you wrote. I want so badly to believe that this is TMJ, but I agree that I'm probably developing bilateral TN. And I've suspected for a while that I have geniculate neuralgia. This is all so scary, since I don't have insurance, and I am constantly thinking that I can't trust these doctors to give me an accurate diagnosis.

What I really need to do is to apply for (and get) disability, and then go out of state to Boston, Baltimore, or even Pittsburgh. I guess it's time to really take this seriously

Thanks again for responding, Red.

Beth


Richard A. "Red" Lawhern said:

Hi Beth. In the nearly 20 years I've been talking with thousands of chronic face pain patients, I've heard the combination of symptoms you describe fairly often. The exhaustion could be cycling through as a side effect of meds or sleep disturbance. With the powerful meds you're on, both are possibilities. And the pain in your ear could be another form of neuralgia called "geniculate" or "nervus intermedius" neuralgia. At a distance, it's difficult to know with precision. A properly trained neurologist should be able to do a differential diagnosis.

As for the jaw soreness, several factors could be involved. Many pain patients clench their teeth, and thus tire the jaw muscles. Alternately, it's possible that you're having precursor symptoms of an emergence of the same form of pain on both sides. Bilateral TN is quite a bit more common than most published sources indicate. TMJ should be considered a distant third possibility, because its symptoms are so diverse and imprecise. A lot of dentists diagnose TMJ when they don't know enough about chronic neurological pain.

I hate to be the bearer of potentially bad news. But these alternate explanations for your symptoms need to be discussed with a medical professional.

Go in Peace and Power

Red Lawhern, Ph.D.

Moderator and Resident Research Analyst

Beth, this is from the drugs interaction checker at drugs.com:

Before taking amitriptyline, tell your doctor if you also use sertraline. You may need dose adjustments or special tests in order to safely take both medications together. This combination may increase the effects of amitriptyline in your body. You should notify your doctor if you have symptoms of sedation, dry mouth, blurred vision, constipation, or urinary retention. You might also have altered consciousness, confusion, poor muscle coordination, abdominal cramping, shivering, pupillary dilation, sweating, high blood pressure, and high heart rate. It is important that you tell your healthcare provider about all other medications that you are using including vitamins and herbs. Do not stop using your medications without first talking to your doctor first.

=================

Regards, Red

Beth said:

I've heard of using nortriptyline and amitriptyline. I take Zoloft for depression/ anxiety, so I wonder if I could take one of those, or if I'd have to go off the Zoloft? I really need to find a doctor who understand this damned disease.

shadow2 said:

Hi Beth, yes, I have had exhaustion with the pain. It often seems to go hand in hand for me. I was having the stabbing headaches which seem to have greatly been controlled with a low dose of Nortriptyline. It has been quite a blessing.

One other thought, Beth: In your home state, your provider options may be limited. But we can do a search on "Top 100 doctors" plus "neurology" plus [State], and see what we turn up. US News and World Reports publishes a survey of top 100 doctors by specialty in each US State, every year. The ratings are established by survey of 50,000+ other doctors, who are asked "if a family member was dealing with Issue X, to whom would you refer them?"

REgards, Red



Beth said:

Red, thank you for the thoughtful reply. My husband was thrilled that you, with so much experience, took the time to respond. I told him this is how the forum works, and he learned what a blessing it is to be able to communicate with others who know and understand.

Well, I have to say that I had to take the night to process what you wrote. I want so badly to believe that this is TMJ, but I agree that I'm probably developing bilateral TN. And I've suspected for a while that I have geniculate neuralgia. This is all so scary, since I don't have insurance, and I am constantly thinking that I can't trust these doctors to give me an accurate diagnosis.

What I really need to do is to apply for (and get) disability, and then go out of state to Boston, Baltimore, or even Pittsburgh. I guess it's time to really take this seriously

Thanks again for responding, Red.

Beth


Richard A. "Red" Lawhern said:

Hi Beth. In the nearly 20 years I've been talking with thousands of chronic face pain patients, I've heard the combination of symptoms you describe fairly often. The exhaustion could be cycling through as a side effect of meds or sleep disturbance. With the powerful meds you're on, both are possibilities. And the pain in your ear could be another form of neuralgia called "geniculate" or "nervus intermedius" neuralgia. At a distance, it's difficult to know with precision. A properly trained neurologist should be able to do a differential diagnosis.

As for the jaw soreness, several factors could be involved. Many pain patients clench their teeth, and thus tire the jaw muscles. Alternately, it's possible that you're having precursor symptoms of an emergence of the same form of pain on both sides. Bilateral TN is quite a bit more common than most published sources indicate. TMJ should be considered a distant third possibility, because its symptoms are so diverse and imprecise. A lot of dentists diagnose TMJ when they don't know enough about chronic neurological pain.

I hate to be the bearer of potentially bad news. But these alternate explanations for your symptoms need to be discussed with a medical professional.

Go in Peace and Power

Red Lawhern, Ph.D.

Moderator and Resident Research Analyst

Write, Red. Thanks for this information. It seems to me that I may not want to try nortriptyline or amitriptyline, given the potential for serious side effects. As for the doctors, I’m going to start that search right now.

Beth



Richard A. “Red” Lawhern said:

One other thought, Beth: In your home state, your provider options may be limited. But we can do a search on “Top 100 doctors” plus “neurology” plus [State], and see what we turn up. US News and World Reports publishes a survey of top 100 doctors by specialty in each US State, every year. The ratings are established by survey of 50,000+ other doctors, who are asked "if a family member was dealing with Issue X, to whom would you refer them?"

REgards, Red

I am only an expert in my own pain, and I have only had that for 9 months. I also have found exhaustion to be a common part of my days. I have life long insomnia, so falling in to sleep at work or school was never a problem, I couldn't sleep if I wanted to, but now, I find myself "foggy" mentally and unable to keep my eyes open. I have wondered if it was the medications, or the deep depression that came from Lyrica effects and prolonged pain, or just lack of sleep, or any other number of things. After talking it over with my doctors I am no closer to figuring it out. (though it quickly became apparent that my neurologist would not be able to help me and I am in the search for a new doc) I hope you find good doctors who can figure this out, I agree it is important to talk about it with them.

I also feel some pain in my "good" jaw side, but I have credited it with doing ALL my chewing with that side since this started. If it gets worse or continues too long I may also have to consider other less pleasant possibilities.
In short, you are not alone, and I hope you can find some answers and some peace. :)

Erika

Hi Erika,

I'm sorry you're struggling, too. Carbemazepine is what led me into a dangerous depression; Lyrica just have me a very weird all-over petechia rash (including the soles of my feet). So because my neuro doc tried three meds and they didn't work, he wants me to have surgery. Yeeaahhh. Three meds. I'm not saying I shouldn't have surgery, but he never brought up amitriptyline or lidocaine or anything else. It just struck me as kind of sad.

I'll keep my fingers, toes, and eyes crossed that your TN doesn't travel to the other side if you'll do the same for me. :)

Beth

I have been fighting this condition for over ten years, Tried everything- injections, ablations, MVD on rt side, Gamma knife on left and the crainelplasty and gangliectomy on the rt side for Occipital Neuralgia.

I had tried at least more then ten drugs first-with side effects from a screaming shrew to a drooling idiot walking with a cane and wetting the bed. The surgeries have helped,but the pain still comes back on both sides. And the Occipital pain is slowing driving me crazy. My husband says --it is not a drive-just a putt - to put me over the edge.

I am sick and tired and tired of being sick. But hang in there- get another opinion. Be your own advocate. Keep copies of everything- all the meds, all the procedures.CT's and MRI's etc. and written reports . Even copies of all yout blood work.

Know everything about YOUR health and history. We are all taking different courses. But we all share the pain and understand what you are going through. I can not give you any medical advise-we are all different-but I can give you the support of knowing you are not alone. People here really understand and care about you. All the very best to you as we travel this rockey road together. My love goes out to you--- Colleen



galli said:

I have been fighting this condition for over ten years, Tried everything- injections, ablations, MVD on rt side, Gamma knife on left and the crainelplasty and gangliectomy on the rt side for Occipital Neuralgia.

I had tried at least more then ten drugs first-with side effects from a screaming shrew to a drooling idiot walking with a cane and wetting the bed. The surgeries have helped,but the pain still comes back on both sides. And the Occipital pain is slowing driving me crazy. My husband says --it is not a drive-just a putt - to put me over the edge.

I am sick and tired and tired of being sick. But hang in there- get another opinion. Be your own advocate. Keep copies of everything- all the meds, all the procedures.CT's and MRI's etc. and written reports . Even copies of all yout blood work.

Know everything about YOUR health and history. We are all taking different courses. But we all share the pain and understand what you are going through. I can not give you any medical advise-we are all different-but I can give you the support of knowing you are not alone. People here really understand and care about you. All the very best to you as we travel this rockey road together. My love goes out to you--- Colleen

Hi! Yes I have days where I am just exhausted. Can barely move my arms some days let alone think. I am very fatigued everyday though. I have been struggling with TN for about 2 years now and I am on 7 medications. I’m not sure if the condition causes this, or if it is TN itself. I also experience the pain in my right ear. I am a nursing student and have learned about the trigeminal nerve in various human anatomy classes. This nerve does intertwine to lead into the ear thus causing pain. My doctor aslo told me that the eye pain and ear pain I have are common for TN. I also have tightness on the left side of my face and I personally believe that is due to the fact that my face is trying to compensate for the squinting and tightness caused by pain on the right side.

I am sorry to hear about your pain that you are experiencing, although I am glad to meet someone with VERY similar symptoms. Let me know how you are doing and of other symptoms so we can chat!!

Best wishes,
Emilie

Yes I have the ear pain also. Sometimes it feels like the worst ear ache ever, other times it is a ice pick being shoved into my ear canal or the ear is being ripped off my head. I am bilateral and have ear pain on both sides. I have rubbed my ears raw, from rubbing it after the pain. It comes grows greater in intesity. slow subsides and a few minutes later can start again. Other days it is not my ear but an imaginary toothache.--I am 67and have dentures. there is no tooth or even root there. Have you ever had you nose tingle like pins and needles-that one is really weird,walking around holding the side of your nose. We are all different and all the same. I think only someone who has suffered this pain can really understand. Even more than a Dr. I use Vicodin also- but it does not put me to sleep. Extreme pain for me is relieved by taking my meds and going to sleep in a dark room with a pillow over my head. The sleep is what breaks the cycle. Then I am in control again and can manage my pain. All the very best to you. I hope you find some peace.


Oh, Colleen! Yikes! I'm so sorry you have had no luck getting long-term relief. I fear. I so completely fear doing anything "drastic" like surgery. I'm terrified and even paralyzed by the notion that I could end up worse than I already am. I keep thinking that this is some horrible dream, or something I made up in my subconscious as an attention-getting ploy.

But I wake up every day and have to face it in some form or fashion. Am I going to be in pain? Am I going to be exhausted? Am I going to be fine? My folks want me to come visit "when I'm in remission," but how long will that last? A day? A morning? A month?

Anyway, thank you for the support. Thank you, also, for the advice about tracking everything. Now that I've applied for disability, I guess it's time.

Take care,

Beth

galli said:

I have been fighting this condition for over ten years, Tried everything- injections, ablations, MVD on rt side, Gamma knife on left and the crainelplasty and gangliectomy on the rt side for Occipital Neuralgia.

I had tried at least more then ten drugs first-with side effects from a screaming shrew to a drooling idiot walking with a cane and wetting the bed. The surgeries have helped,but the pain still comes back on both sides. And the Occipital pain is slowing driving me crazy. My husband says --it is not a drive-just a putt - to put me over the edge.

I am sick and tired and tired of being sick. But hang in there- get another opinion. Be your own advocate. Keep copies of everything- all the meds, all the procedures.CT's and MRI's etc. and written reports . Even copies of all yout blood work.

Know everything about YOUR health and history. We are all taking different courses. But we all share the pain and understand what you are going through. I can not give you any medical advise-we are all different-but I can give you the support of knowing you are not alone. People here really understand and care about you. All the very best to you as we travel this rockey road together. My love goes out to you--- Colleen

I can certainly wish and hope for good doctors, treatments and luck for you! It is my pleasure!

Beth said:

Hi Erika,

I'm sorry you're struggling, too. Carbemazepine is what led me into a dangerous depression; Lyrica just have me a very weird all-over petechia rash (including the soles of my feet). So because my neuro doc tried three meds and they didn't work, he wants me to have surgery. Yeeaahhh. Three meds. I'm not saying I shouldn't have surgery, but he never brought up amitriptyline or lidocaine or anything else. It just struck me as kind of sad.

I'll keep my fingers, toes, and eyes crossed that your TN doesn't travel to the other side if you'll do the same for me. :)

Beth