ATN (TYPE II TN) and burning chest pain

1

Hey group,

I think the progression of my disease/condition is really quite unique and rare but I wanted to ask around in the group if anyone else has had such a progression.

Ive had the 24/7 10/10 constant burning pain in my cheek for 4 years now but 6 months ago I began to notice that I wasnt just able to not sleep on the left side of my face but also the left side of my chest. If i tried to sleep on the left side of my chest it would burn a little like a stitch or something. I found this odd and put it down to maybe a strain or something. BUT it didnt go away and its to the point now where that pain is in that entire muscle on the front of my chest... It stings when I massage it with my thumb and I cant sleep it at all now... within about 30 seconds the pain is unbareable(cbb looking up the spelling of this word atm).

The chest pain for me is now to the point if I dont give it some serious exercise, such as swim 30 laps at the pool or do a gym program with a lot of upper body work I wont be able to sleep till 4 or 5 am. So exercise has had to become a major part of my regime.

I did see a neuro yesterday and they said that if I did have something like MS, which they are almost certain I dont have since I have no lesions etc, that I would be placed on the same medications im on at the moment anyway. This was very disheartening ! Neurologists appointments can really get you down sometimes when you dont get the response you were hoping for. I thought my chest pain may have been a clue to the progression of my condition and I now think that maybe I dont "JUST" have ATN but some other autoimmune disease or something as well and that there may be some medications I could be taking to slow down the progression of this beast.

Has anyone else gotten chest pain ? after some time of ATN ... type II 2 TN

Thanks :-)

2

Actually Luke, I’ve not only had chest pain, but severe pain in my arm and hand - all on my prominent ATN side and occasionally on both sides, just like my ATN. I had to talk myself out of going to the ER, just in case I was really having a heart attack. It was rather frightening since there’s no one here with me to notice if I hit the floor. It finally eased up after three days.

The pain in my arm started first, then the hand and then the chest. Don’t know but believe it’s just the nerves going haywire. Will be calling the neurologist and telling them to document it in my record so it’s addressed at my next appointment.

Hope your pain is easing up. Best wishes.

3

Hi Luke,

I do not have the same exact symptomology as you do but I do have a burning chest pain. I have ATN on the left side and my chest pain is also on the left side. I have a burning pain that shoots to the near middle where the breast bone is and it stops.

I have Fibromyalgia in addition to ATN and TN (on the right side). My rheumatologist told me that she believes the chest pain is a response of the Fibromyalgia to the ATN. I have been to the Cardiologist and had all the tests done, wore a monitor for 30 days, and everything. Heart is all good! This is why my Rheumatologist feels that it is from the combination of the ATN and Fibromyalgia. That may be something for you to check into.

When it first occurred I thought I had a heart attack. I was terrified. My new problem is tremors. I have been have tremors in both upper extremities with the added bonus of dropping things. I know that MS can also coincide with TN patients; however, Lou Gherig's Disease (ALS) runs in my family too. I am going to see the doctor about this in the next week.

It just seems that ever since I was diagnosed with Trigeminal Neuralgia, I keep getting new diagnosis. It is so frustrating as I am sure you know.

Best Wishes,

LaLa

4

Wow, Luke.

I am sorry to hear about your new symptom, and I wish I useful information.

I know that TN patients seem to be more susceptible to other types of other types of peripheral neuropathy. One article on this which I found a bit disturbing on the topic of peripheral neuropathy, yet interesting: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001619/

Of course, we here cannot be certain that this burning chest pain is neuropathy. Yes, Neurologist appointments can get you down. They have never offered any solutions to me. They tell me that I do not have M.S., because they see no lesions, yet I have burning sensations in running to one of my toes in the morning, and it is so bad that I crawl out of bed in severe pain. Also, I have sensations in my feet, at times, after being at rest as if I have stepped on broken glass, a burning sensation, and it is so severe that I have to get up. Once I walk a bit, it subsides. I have not pursued hounding my physicians to find reasoning for this yet.

Your chest pain, though, is in an area of your body which would seem to be much more alarming to me.

I am going to take a cue from you about exercise. Gloria has been hounding me to get more.

Promise us that you will work closely with your Neurologists, although they bring you down, to make sure that they pin down a reason for this pain, if you can. I do not mean to be an alarmist, but I am concerned. Do not let them brush you off if you have questions. We know that they do not like what they don't understand. Like I always say, do not let your pain be dismissed. In this case, it may be a warning sign of something which needs close attention, on the other hand, it may not be serious at all. Whatever the reason, if it is causing you to have to struggle this hard in your day to day life, it requires prompt and thorough attention!

Be authoritative if you have to! Make sure that you have your physician's undivided attention on this matter!

That's just my input, for what it's worth.

Take care, and wishing you informed and effective care and superior pain relief, and a more definitive diagnosis regarding your new symptom, if possible, my friend!

It sounds like you're staying strong! Hang in there!

Stef

5

It could be anxiety attacks. It kinda burns then tightens then as you take a deeps breath it tightens more then goes away. Yours may be worse. That's how mine are. I have had them often especially before I was on and during Zoloft. There was a time I thought I was having a heart attack and went to the hospital. It was anxiety. Bad juju. Anxiety is. Now that I have been on Effexor I do not get them anymore. I even got them as a child. If this IS what they are for you they sound pretty intense. Best wishes Luke. I hope you get better soon. Min

6

Thanks everyone, I sometimes forget how supportive our little group is ! :-)

@Gloria, what I didnt mention is yes my left arm has felt numb now for almost a year... and I do get pain in both of my hands. I've also woken in the night thinking I was having a heart attack. I think the neuralgia might be spreading in our cases.

@LaLa- yes my burning pain stops at the breast bone as well which I kept thinking about how strange that is, but anatomically it makes sense as the nerves in that area dont cross over the middle ? They branch out from near our neck right ? so it would suffice to say that 1-2 or of them are now being damaged as well.Like maybe the sheath of the nerve is getting damaged due to our condition like the trigeminal nerve may have been.

@Steph- Thanks for your support ! friend :-) ... and thanks for the article. The neuro appointment I had 2 days ago she did mention that this could be more peripheral neuropathy. But the solutions never seem to come from them ! They come from here or us doing our own research !

I am worried about the chest pain, and at this stage it only appears to be in the muscle/tissue outside of my ribcage, so if there is any good news for me there is that. Steph I wanted to ask around about the chest pain as it has been scaring me a little these past few weeks and I was relieved to find im not alone, but ! I also have a lot of other peripheral symptoms I didnt mention which I have been getting checked out by Dr's for the past for months now... including my skin used to just be numb around my trigeminal nerve area but that spread down my neck, down my left arm and down the left side of my chest, my hands and feet sting sometimes and a general aching/stinging in arms and legs. So your leg pain doesn't surprise me as Ive experienced similar things myself and at this stage no Dr Ive told knows what it is !Exercise is amazing for our condition, I swear by it ! and have been on a program for 6 months now. When you exercise you release your bodies natural pain killers plus endorphins so you feel really good after it :-) you should talk to your pain management officer about it, They should have already suggested it to you in the first place !

@hey min :-), I m pretty sure its not anxiety because Ive got all these other pains and numbness through out my body which I hadnt mentioned as I as just checking to see if anyone else was getting a burning chest just on one side. Plus with the growing area of numbness down my left arm and chest it almost certainly something else.

So at this stage Im not sure what is going on, but I have a series of neuro appointments coming up to investigate it all. Even though everyone on here said the nerve mapping was a waist of time, Ill still have the test done as Id like to see the results and it was a part of the neuro appointment 1st week of march.

7

Hi, Luke,

I would concur with others who have suggested that you may be dealing with some type of systemic neuropathy in addition to and different from your trigeminal pain. Your symptoms don't seem to line up well with anxiety. If you also experience shortness of breath of deeply penetrating pain then it's time to get yourself to an ER, of course. Meantime be aware that symptoms such as you mention can overlap quite a number of medical disorders, some of which can be subtle and difficult to diagnose. Even cases of MS may require a couple of years to resolve sufficiently that a neurologist will confirm a diagnosis.

One other stray thought: have you been checked out for Lupus or other auto-immune disorders? That classification of disease can cause wide-spread and shifting symptoms, some of which are similar to what you report?

Regards and best,

Red

8

Thanks for going through the thread richard, I just realised how lengthy my replies were!

I will bring up some of your points in the continuing dialogue with my Doctors, thank you. For now all I can do is continue with my regime, until my next appointments.

9

i have vocal cord dysfunction ant it gives me shortness of breath, palpitations, but i have scar tissue and reflux. acid reflux which is pretty common feels like heartburn to some. It can even affect the nasal cavity. I wore a holter for 2 weeksto check my heart because i felt like i was having a heart attack. This was diagnosed by my ent. I had no idea that neck scar tissue by the esophagus could cause tightness on the right side of my abdomen.

You said your nerve pain is in the cheek area and so is mine. just one of my areas. I have pressure on the infra-orbital nerve. Do you have a diagnosis other thanATN?

I also have neuropathy from my shouders to arms to hands but again that stems from spinal assessory nerves. Nerve root pain can travel. like pinched nerves.

It could be simply from compression. In my case they blame irritated nerve roots by the cervical spine. Wouldnt an emg help to evaluate this. Feel better. We all overlap so much. Gloria and I have the same symptoms. I wish I could exercise. I am always wiped out.

10

Has anyone here started with Classic TN for it then to develop into ATN? If so did you Classic TN stop for good? My ATN began just a few months after the Classic TN.

11

the fact that you are exercing is great!

Luke said:

Thanks for going through the thread richard, I just realised how lengthy my replies were!

I will bring up some of your points in the continuing dialogue with my Doctors, thank you. For now all I can do is continue with my regime, until my next appointments.

12

ive always had atypical but i am atypical. i find the hot pepper creams work.

elstep said:

Has anyone here started with Classic TN for it then to develop into ATN? If so did you Classic TN stop for good? My ATN began just a few months after the Classic TN.

13

what is body mapping.

elaine48 said:

the fact that you are exercing is great!

Luke said:

Thanks for going through the thread richard, I just realised how lengthy my replies were!

I will bring up some of your points in the continuing dialogue with my Doctors, thank you. For now all I can do is continue with my regime, until my next appointments.

14

wondering if you mind sharing your med regimen. thanks.

La La said:

Hi Luke,

I do not have the same exact symptomology as you do but I do have a burning chest pain. I have ATN on the left side and my chest pain is also on the left side. I have a burning pain that shoots to the near middle where the breast bone is and it stops.

I have Fibromyalgia in addition to ATN and TN (on the right side). My rheumatologist told me that she believes the chest pain is a response of the Fibromyalgia to the ATN. I have been to the Cardiologist and had all the tests done, wore a monitor for 30 days, and everything. Heart is all good! This is why my Rheumatologist feels that it is from the combination of the ATN and Fibromyalgia. That may be something for you to check into.

When it first occurred I thought I had a heart attack. I was terrified. My new problem is tremors. I have been have tremors in both upper extremities with the added bonus of dropping things. I know that MS can also coincide with TN patients; however, Lou Gherig's Disease (ALS) runs in my family too. I am going to see the doctor about this in the next week.

It just seems that ever since I was diagnosed with Trigeminal Neuralgia, I keep getting new diagnosis. It is so frustrating as I am sure you know.

Best Wishes,

LaLa

15

@Elaine I was reffering to my stretching and exercise regime... which I learnt at my pain management course. I do like 45 minutes stretching every day, gym program, swim, run, hydro... etc. I wrote all about it here > http://www.livingwithtn.org/group/atypicaltrigeminalneuralgia/forum/topics/pain-management-clinic-course-for-atn

Also I dont really know what a "nerve mapping" or "nerve conduction" test is yet, as Im not having mine till march. I never mentioned anything called a "body mapping". There is apparently not a lot of faith placed in the test from prominent neurosurgeons though, so Im not holding my breath.

16

Sure thing.

I take:

Baclofen 10MG 3xday

Tegretol 200MG 2xday (carbamazepine)

Methadone 5MG 2xday

Klonopin 20MG 2xday (clonazepam)

Effexor XR 150MG 1xday

Flexiril 5MG every 6h as prn

Norco 7.5/325MG 2xday prn

Ambien 10MG bedtime for sleep

I also take meds for high blood pressure, diabetes, GERD, and allergies.

LaLa



elaine48 said:

wondering if you mind sharing your med regimen. thanks.

La La said:

Hi Luke,

I do not have the same exact symptomology as you do but I do have a burning chest pain. I have ATN on the left side and my chest pain is also on the left side. I have a burning pain that shoots to the near middle where the breast bone is and it stops.

I have Fibromyalgia in addition to ATN and TN (on the right side). My rheumatologist told me that she believes the chest pain is a response of the Fibromyalgia to the ATN. I have been to the Cardiologist and had all the tests done, wore a monitor for 30 days, and everything. Heart is all good! This is why my Rheumatologist feels that it is from the combination of the ATN and Fibromyalgia. That may be something for you to check into.

When it first occurred I thought I had a heart attack. I was terrified. My new problem is tremors. I have been have tremors in both upper extremities with the added bonus of dropping things. I know that MS can also coincide with TN patients; however, Lou Gherig's Disease (ALS) runs in my family too. I am going to see the doctor about this in the next week.

It just seems that ever since I was diagnosed with Trigeminal Neuralgia, I keep getting new diagnosis. It is so frustrating as I am sure you know.

Best Wishes,

LaLa

17

have you been checked for auto immune. i had this in ny. i had low b12 and had injections. even with it up, i had pain. never found anything immune. what do you do for pain.

18

luke i have chest pain and believe it or not alot is comining or iniated by the ear traveling around to the jaw and nape and down. I adont know if the face surgeon damaged the spinal acessory nerves or multiple peripheral nerves are involved or neuromas. i dont know how this would show up on.. my cheek and upper lid is a trigger. heat removes my pain, releases fluid, and with less pressure it will stop. you cant see peripheral nerves. when the all clump together on my cheek and im in the cold it triggers burning.

can you have more than one thing going on as i do.

im typ2 with neuropathy.