New here. So tired and depressed on tegretol. I’m not even myself anymore.
I don’t understand why I can’t push myself anymore. I’m done. Worn out. So, so tired. I’m not even teaching because I don’t have the strength anymore. The pain is blocked from the tegretol although I get pressure - does anyone else feel pressure in the sinus area? I have pressure in my jaw also and my ears pop alot. Some shooting pain still comes through in my ear but it isn’t severe. I just am so tired and depressed. So hard to talk and smile - makes pressure in my face. I have an appt. with a surgeon on the 19th to discuss options. I just lay and cry because I’m so sick of being tired. The tired spells hit many times a day. They are overwhelming. But then they leave for awhile and I am still tired but not as severe. Does anyone have this same feeling? Why is this happening? Is it the tegretol or the TN?
Dear Jamie Leigh,
It’s great that you’ve come here to discuss what you’re going through - please remember, you are not alone - everyone here understands what you’re going through - and the gamut of emotions we experience are virtually the same for all of us! What’s important is your recognition and being able to verbalise how you feel - this, you have done for us here and I congratulate you on that! It’s a big step for many of us.
The fact that your medication (tegretol) is helping you is wonderful, I’m not sure what dose you’re taking, and I am NOT a medically trained person by any means, but we all act differently to different meds. If you feel that the meds may be making things worse for you in general, please do contact the prescribing doctor to discuss further options.
You are relativly new to TN and I’m sory to hear it’s struck you so badly early on. Were you experiencing TN for long before the Dr’s were able to accurately diagnose you?
As for the “spells” as you name them yes - I too experience pain on such a level and more - pain wipes me out, yet the pain prevents sleep - all in all, this causes us stress - and unofficically, it’s my view that stress may be a trigger.
It may not help a lot - but try laying a heat pack just around the back of your neck, as it may trigger more pain placed on the face directly, phone your neurologist / gp for a consult on the meds - sometimes it takes 2 different meds or more in combination to achieve a pain free status for a while, and yes - the side effects of some meds are prominent in some people more than others.
I am always exhausted after the TN monster attacks, my bodies way of providing me releif. I may sleep one night, but miss the next being awake all night with repetitive and constant attacks, only for morning to arrive and pain disappear.
I too am unabe to work presently, so I try to find relaxing hobbies / music to listen to that relaxes you etc., these things, can help lower your stress and maybe calm the nerves down as well.
Make sure you follow all your doctors instructions precisely regarding timing to take your meds and what to avoid while you’re taking them.
If you’ve any detailed questions - please feel free to private message me here on site! I’m always happy to talk things over with friends here on LWTN!
Best wishes Jamie Leigh, I hope you can help sort through this - and REMEMBER! You are never alone when you have an attack - log in, maybe someones in chat - and you can share a laugh and a chat with someone here. Tongiht / this morning I cannot - it’s after 4 am now - so I need some sleep -)
All my best wishes to you Jamie Leigh!
Cheers ~ Kerry xx
Jamie,
First of all welcome. This site has been tremendous in helping me find out more what TN & treatments do. I’m sorry to hear how you’re feeling, & about your career. TN takes so much out of you, & the medicine makes you feel so incredibly exhausted. The doctors told me to get my thyorid checked, it was fine. It’s the meds. I kept thinking that I had the worst sinus headaches, but they weren’t migraines they were in the nose area. I have called many times to the Gamma Knife center, leaving tear filled messages because I couln’t stand it. A lot of people here on the site have the same side effects, & frustration. I hope you have a good visit w/ the surgeon, that he is compassionate, & knowledgable.
My doctor cut back on my tegretol and I’m not feeling quite as sick. He said I am ultra sensitive to it. So far, not extra pain. I have a friend who thinks my problem is not so much physical, but emotional, because of some of the stress I’ve been under for the past year. This makes me feel even worse. She’s not trying to be unsupportive but it makes me feel like more of a failure.
Jamie,
I think everything is connected. The stress for me I believe is the culprit, but you can’t avoid stress. At least not in this economy. You are an incredibly strong person, & from your blog posts that I’ve read, it shows you are serious about getting treatment. Sometimes, I just want to sit on the floor & go to sleep at work, because I’m nauseous & exhausted. But, then I remember all of you on here & I keep going. We are all strong warriors fighting this pain, and not giving up. I hope you have a wonderful day.
Hi Jamie,
Tegretol was my main med for eight years. It made me tired. I had MVD in May 2009 and am not on any meds now and am pain free. I can remember very clearly the sinus and allergy problems and the doctors saying it had nothing to do with TN. Every winter if the left side of nose got a nose bleed the TN would always get worse.
As far a your friend saying this is emotional, well after so much pain it is emotional, BUT , it is a physical problem. I had two artery compressions and two veins interferring in the nerve.
Good luck and do your research well before making your decision after the surgeon appointment.
Connie
Hi Connie,
Thanks for writing and I’m so glad you are pain free.
Did you stay on the tegretol all of the time or did you have remissions? How do you know if you are in remission if you are on the tegretol?
Thanks,
jamie
Hi Jamie,
Your symptoms sound just like mine. So tired and sick feeling, pressure on your face (mine is the left side too), pressure in your sinus (doctors kept diagnosing me with sinusitis because they didn’t know what it was at first), no strength and loosing energy to get going a little more each day, tire spells that make my eyes close uncontrollably at work, can’t talk to much or smile-causes tension and shooting pains from my ear/temple area, eating and breathing cold air is also triggers for me. TN SUCKSso much! The difference I see is I am not on tegretol, I take tons of tramacet and loads of gabapentine a day.
I hope your pain gets easier to deal with and you feel better soon.
Amber
Hi Jamie
I was on Tegretol from the beginning - eight years. I never went completely off. I tried at the beginning to go off when the pain was gone for three months - pain came back immediately once I stopped taking Tegretol. They kept me on a low maintenance dose that steadily increased over the eight years as the pain became worse. At the end I was on Tegretol, Baclofen and Lyrica and the pain was still breaking thru. Over the years, I would have remissions for awhile and then pain for awhile until the pain would not go away. I was at the end of being able to take Tegretol. That is when I had the MVD and am very happy that I finally made a decision to do something about this besides the meds.
Hope this helps.
Connie