My TN came back the first week of January, and hasn't stopped yet. In fact it is at anywhere from a 8 to a 10+ or beyond. I am sitting in a hospital bed as I write due to hyponatremia, low sodium blood level at 128. Someone mentioned something about what is needed for proper nerve functioning. What was that? My syptoms were dizziness, sleeping for almost 3 days straight, complete confusion, foggy, disoriented, and cramping which I thought were flu syptoms (the symptoms gradually became worse to this degree which put me in the ER by my own decision or fear because doctors weren't on listening to me, again. My TN increased in pain as the above symptoms increased to this current condition. I had a change in meds to help the TN which made the Hyponatremia worse. Anyone else have this happen?
Didn’t your doctor monitor you?
Will ER give you a lidocaine patch you can cut up and put on face? worked better on my pain than dillaudid narcotic!
Keep us posted!
My neurologist advised that low sodium levels could result from Trileptal and I have to do periodic blood work to make sure this does not become a problem. Are you on meds that could have caused this? I asked him if there was anything I could do to prevent or mitigate this problem and he said no, adding salt to your diet will not make any difference. I have heard that drinking too much fluid will dilute the sodium in your system but I lean more toward not drinking enough fluids so I wasn't too worried about that. I hope you are home from the hospital by now and that your are feeling more stable. You are in my thoughts. -Laura
I have no idea what is causing this but wishing you well, and hope it is easily correctable.
The doctors found that I have Hyponatremia (low blood sodium level 135-145 normal; mine was 127) treated with sodium IV solution. This condition is potentially fatal, however treatment is successful if provided early enough. Also, the recovery period needs monitoring. Hyponatremia is fluid at the molecular level and effects the brain which causes symptoms of confusion, dizzy, bouncing/blurred vision, weakness, severe sleepiness, seizure, and coma. I was symptomatic of all except the seizure and coma. It is highly likely from the Trileptal, no other causes are determined and I did not have this before the Trileptal, it was given to me as a new med as an attempt to get the severe TN attack under control. I am still on the Trileptal...great docs...sarcasm...my neurologist is to see me right away in the office to determine other meds. They are scheduling me in early April...I told them absolutely not. Long story but she (neurologist) had me get a blood test a week before my hospital stay...level was 131. She said it is a little low so just need to monitor it...don't drink water use other such as Gatorade, anything with sodium in it and to put lots of salt on my food. I should have been hospitalized at that time since I was so symptomatic even then. Anyway, I went to ER again last Thursday, 24 hours after discharged, for mild symptoms but level was at 135. doctors concerned because so low on normal range and high potential for drop again. Don't want me on Trileptal so neurologist is supposed to change med...still home waiting to see what is going to happen next...hyponatremia is such a dangerous condition that i don't know if symptoms are from recovering, typical recovery period, or teetering on another crash. I am trying to find another neurologist but the group that she is in is the same group that all the others are in and won't except me as a transfer patient.
hope seeker said:
My neurologist advised that low sodium levels could result from Trileptal and I have to do periodic blood work to make sure this does not become a problem. Are you on meds that could have caused this? I asked him if there was anything I could do to prevent or mitigate this problem and he said no, adding salt to your diet will not make any difference. I have heard that drinking too much fluid will dilute the sodium in your system but I lean more toward not drinking enough fluids so I wasn't too worried about that. I hope you are home from the hospital by now and that your are feeling more stable. You are in my thoughts. -Laura
Can you look at a neuro further away?.. Somebody competent?
Exactly what I am trying to do...and wow are you right 'COMPETENT!' She is putting my life in danger not to mention keeping me in excruciating pain. Ironically working on the computer/deskwork/etc. causes severe extra pain on top of the excruciating pain. In tears all evening, not able to eat or speak...which will bring the low sodium level problem back. Lost in my mind...feeling as though I'm losing control of all of this pain and not having a doctor who will listen to me. I don't know how I would manage at all if it wasn't for this group.
I haven't been on the forum for ages but saw your post and felt so bad or you.
I was just in the ER a month ago for Hyponatremia. I was suddenly very tired and ended up sleeping all day and that night I woke having to use the bathroom. I bounced off all the walls getting there and when I got up I knew I would not make it back to bed.I thought I had the flu. I yelled for my daughter and asked her to get me back to bed and I guess I passed out. I woke and she had me under the arms holding me up. I told her to not hold me so hard it was hurting and she said I had passed out. I still don't remember. Her boyfriend called an ambulance.
Neuro said it was the Tegratol. So I am going off of it. Since then my numbers have stayed up mostly but I have had days with low numbers. I have found that the low number days are the ones I did not drink enough. Drinking is very important!. I vomit if I drink water so I drink herb tea all day with some honey. I have read that you need carbs for the sodium to regulate properly so I have started eating them a bit more.
I have a lot of sympathy for your pain as I am sure we all do. I can't eat when it happens to me. I use baby foods and warmed applesauce. Mashed bananas if I can, mashed sweet potato etc.
I have been to point of suicide a lot since I have been off the forum. Struggling with that as I have two kids (early 20's).
They freak out if I try to talk about it so I don't anymore. I am much better now as the Tegratol was helping at 600mg a day. I am terrified of switching to another med but I hate living with the daily battle of low sodium.
Thank goodness I have a wonderful family doc. She knows quite a bit about TN and is quite concerned about the low sodium and so I am going weekly for blood test as well as getting other test done. We are waiting to see if it is the Tegratol for sure.
I am going to post again in the next day or so. Right now I have one eye watering pretty bad and can't see very well. :( This usually means I will have a severe pain attack in the next day or so. I am down to 400mg Tegratol now and it is all starting to come back.
Big hug to you and get some Oragel PM (Walmart) and put it all over your gums and a bit on a Q tip and you can put it up your nose a bit. Don't go too far! A hot cloth or a rice bag warmed in the microwave on you face helps a lot too. I sip warm drinks and hold it in my mouth for a bit. Emla cream to rub on you face.
thank you Charlie. It is terrible trying to relieve pain and worry about/deal with this hyponatremia...I never know what is typical reactions and which ones are hyponatremia related. My neurologist isn't concerned and 'scolded' me for indicating that I didn't want to continue with Trileptal since it causing hyponatremia...her response was "you had it but you don't anymore." I don't know what to do with this pain. I understand your thoughts of suicide, I was at my doctors office yesterday crying uncontrollably feeling trapped, hopeless, and 'claustiphobic' unable to stop or even subside the pain. I don't entertain the thought of suicide at all because of all those things I love in life...I have a 17yo son who has no one else but me (his father left), and a 29yo daughter who is disabled...living with another family (called LifeSharing) so they care for her. My last hope is surgery that won't kill me...but leave me 'somewhat' disabled. I have a call in to the neurosurgeon at Pittsburg UMPC who, last year, gave me the not-so-good news of the high risks involved. I need to know what those options were...I was in such denial and shock that I really don't remember all that he told me.
Again, thank you so much for the reply. I will try the possible pain relief 'solutions' as well. I have one suggestion for you, which 'at times' seems to work, at least to take the edge off...it's a topical compound that is prescribed by a neuro or family doctor. It is specially formulated to each individual. It is from DermaTran. You rub it on your face in the area of pain or and then some.
Your 'exciting' food diet sounds just like mine.
Take care and hugs to you as well. Somehow we can do this...don't know how yet, grasping at all possiblilities and finding some consistent triggers...difficult part is getting a doctor who believes me...not dismiss me.
Take care and hugs to you as well
Prudence
charlie said:
I haven't been on the forum for ages but saw your post and felt so bad or you.
I was just in the ER a month ago for Hyponatremia. I was suddenly very tired and ended up sleeping all day and that night I woke having to use the bathroom. I bounced off all the walls getting there and when I got up I knew I would not make it back to bed.I thought I had the flu. I yelled for my daughter and asked her to get me back to bed and I guess I passed out. I woke and she had me under the arms holding me up. I told her to not hold me so hard it was hurting and she said I had passed out. I still don't remember. Her boyfriend called an ambulance.
Neuro said it was the Tegratol. So I am going off of it. Since then my numbers have stayed up mostly but I have had days with low numbers. I have found that the low number days are the ones I did not drink enough. Drinking is very important!. I vomit if I drink water so I drink herb tea all day with some honey. I have read that you need carbs for the sodium to regulate properly so I have started eating them a bit more.
I have a lot of sympathy for your pain as I am sure we all do. I can't eat when it happens to me. I use baby foods and warmed applesauce. Mashed bananas if I can, mashed sweet potato etc.
I have been to point of suicide a lot since I have been off the forum. Struggling with that as I have two kids (early 20's).
They freak out if I try to talk about it so I don't anymore. I am much better now as the Tegratol was helping at 600mg a day. I am terrified of switching to another med but I hate living with the daily battle of low sodium.
Thank goodness I have a wonderful family doc. She knows quite a bit about TN and is quite concerned about the low sodium and so I am going weekly for blood test as well as getting other test done. We are waiting to see if it is the Tegratol for sure.
I am going to post again in the next day or so. Right now I have one eye watering pretty bad and can't see very well. :( This usually means I will have a severe pain attack in the next day or so. I am down to 400mg Tegratol now and it is all starting to come back.
Big hug to you and get some Oragel PM (Walmart) and put it all over your gums and a bit on a Q tip and you can put it up your nose a bit. Don't go too far! A hot cloth or a rice bag warmed in the microwave on you face helps a lot too. I sip warm drinks and hold it in my mouth for a bit. Emla cream to rub on you face.
Geez, I always mess up when I try to post. :( I'll try again.
I was wondering how you are doing?
My low sodium problem continued even as I went off Tegratol. My family doc was concerned and continued to investigate. Turns out that I have cancer. I surely hope it is nothing like that for you! trust your feelings and continue to push whoever you need to, family doc or Neuro or whatever. No one knows our body like we do and no one will fight for us like we can.
Please let us know how you are doing.
I was admitted to hospital via e.r in march also. My sodium was 121. I was immediately put on fluid restrictions of 800 mls every 24 hours. My fluid bounced back in a day. I am on 800 mgs of Carbamazepine a day
Carbamazepine can cause the low sodium. I was taking 600mg. keep checking your sodium for a while to make sure it stays up.