It has been one week since I received a diagnosis of tn. They haven’t yet upped my tegretol though I’ve asked, they just keep upping the narcotics. I know they’re not very strong in terms of what is out there so I don’t worry and do as I’m told. Monday I started feeling feverish. I thought I was just run down and exhausted from everything I’ve been going through…you’ve all been there you know how it goes… but by midnight my temperature was up to 103. I felt like I had the flu and it really hurt to swallow. Yesterday I called the doctor to let them know what was going on and they asked if I could look at my tonsels. Sure enough they were huge and had what I thought was slivers of skin coming off of them. At that, I was told “get your Ass to the emergency room, we will let them know you’re on the way”. The 45 minutes there all I could think was it was sjs from the tegretol. I arrived at the er and within minutes a doctor and nurse were waiting for me. He swabbed my throat and checked my tongue for lesions. He came back a few minutes later and assured me it was only a nasty case of strep throat. I haven’t had strep throat in probably 15 years!! Have any of you guys had the same problem of getting very ill when you usually don’t? Or haven’t in the past? Should I still be on the lookout for more symptoms? This is truly exhausting and my heart goes out to everyone living with tn. on a happier note I suppose, I am not getting about 20 minutes an hour shock free!
Sorry,you should worry and question what you are told
You are the customer -- there are many docs to choose from
Valid reason for not going up on Tegretol yet?
Glad you only had strep
Stress, food, dentistry, sinus infections, soooo many things make this crap worse!
Keep learning for yourself so you can pick your treatments
Get the book
Striking Back by Dr. Ken Casey -- 200+ ideas for medical and natural things that help our TN
Hope you feel better soooooon
I have had more infections during my 7 TN years than the previous 48! I read that infections may be a side effect of Gabapentin. I wonder if another member can add their knowledge of Teg to this thread.
Hope you get better soon!
I’m sorry. It does stink getting sick, and it stinks alot more with Tn. I have always gotten infections and illnesses easily, no matter how much I try to avoid it. Since having TN it gotten worse. A little cold can wipe me out, bring other illnesses, and takes longer to get over now. Last fall I got something that nobody is sure what is was or just the TN or fibromyalgia, or even reaction to my medications that sent me to the er three times with a week long stay in the hospital. Definitely watch your symptoms and call your doctor if they worsen. Generally any chronic illness I think takes a toll on the body’s immune system, which can just make little things such as strep that much worse. I hope you feel better soon. Hugs to you and take care
Praying for you, sickness I am finding out is something that you can not always get ahead of anymore it likes to grab on. I stick to prayer for this even more so now. I could imagine how hard it would be to have the kids at home and everyday challenges. I know it is just me and my husband the challenges are there, it really takes allot out of me when the grandkids are all here. Prayers for you my friend one day at a time life is worth it.
I also have gotten sick during the last 8mo with TN. My PCP said it is to be expected because our bodies are using so much energy emotionally and physically to fight the pain and a lot of us have trouble getting enough sleep. Hang in there…and maybe another opinion is worth looking into… I had one dr finally increase Tegretol and one that put me on Neurontin as well. Some just drag their feet especially when they are NOT the ones in pain. Feel better.
Hi Teran,
You make want to check to see if the tegertol affects your white blood cell count like trileptal does. I am on trileptal and need to be checked since my white blood cell counts will really drop off and I end up getting sick.
Feel better.
Hi Teran,
I was on Tegretol when I was first dx'ed 4 years ago. My Dr explained to me that I would start on a low dose and that it would only increase about every 4-6 weeks because it might take that long to know if it would be effective. I had to have a blood test to set the base levels for liver function and other things. Then I had one very 3 months to compare. I still had breakthrough pain during stressful times. She told me up front that it might somewhat compromise my immune system. And I did take everything that came along! Harder and longer! Even though I was "guarded".
I took it for a 1.5 years and finally had a nice remission. when the pain returned, I tried Gabapentin which did not seem to have such side effects. Now I am on Trileptal and it seemed to be effective much sooner than the Tegretol was. But nothing was said about blood work so I made another PCP appointment today. (PMS changed me from Gab and would like to confirm with PCP that I am doing everything I need to).
I have learned a lot more from this very awesome group of people than I ever did any where else. Everyone's experience is so different and so are their Drs.....there are many, many options. Have hope that you will find what works for you and sometimes it just takes time.
Hope you feel better soon!
Sara