Hello! I am brand new here....stumbled across this support & informational group by accident! I am a 40yr old RN dx with TN about 4yrs ago. I am used to helping others & struggle at times to reach out to others about this condition. I go to a fabulous Neurologist/Pain Management MD who has saved my life. Tried several different medications....including Trileptal (severe skin reaction requiring Prenisone to get rid of). Currently on Gabapentin which I have gradually increased to 900mg 3x's/day (2,700mg). I have even gotten to 3,200mg daily after I was diagnosed with shingles on the OPPOSITE side as my TN (not sure if that was a blessing or a curse) this past Christmas. I also take Oxycodone 5mg twice a day . However, during my shingles course, I bumped up my Gabapentin and Oxycodone to help with the pain. For the past 6 months I have noticed my hair falling out. I had a beautiful little girl 15 months ago (Yes...I am 40yrs!! The meds must have been working..LOL). I wasn't on the Neurontin then and have gradually been building up my dosage after breastfeeding (about 11months). Strangely, the hair on my right scalp (where my TN is located) is about half the thickness as the left side! I am getting frantic. Have switched shampoo's, talked with the MD's I work with who all attributed it to post partum changes, been taking a B Complex vitamin twice daily, increased my water intake, gotten a different haircut, and now, recently,tried Women's Rogaine (don't laugh!). I have several almost bald spots on the right side of my head! Above all, my post-herpatic shingles pain is getting on my nerves (no pun intended) this week with the weather changes. Any thoughts?? I've reached a plateau on the Neurontin and don't want to keep increasing the dosage. I am almost out of my Oxycodone. I know not to stop either med cold turkey, but with my hair falling out (Noticably, I might add), I am feeling desperate. Please....does anyone have any thoughts or ideas?
Hi, I ran across ur post this morning!! Funny because I am also 40 an RN and was diagnosed 4 years ago…its crazy who we meet on here. I don’t have any advice on the hair loss but, I think you need to add a couple other meds to ur combo…the best combination is an antiseizure(which u are on), a muscle relaxer like baclofen, and a antidepressant like cymbalta…I take trileptal 1800mg/day, baclofen 30mg/dayand cymbalta 60.mg/day. It is the best combination I have ever been on!! I function great…the only side effect I notice is some problems finding the word I want to say, and a little short term memory problems( I write everything down at work). I work in a pediatric ICU…Hope this advice helps with the pain at least…and I hope u find the solution to the hair loss!! Keep fighting!!
Thanks Lisa (my twin sister's name......to add another coincidence!!). I am going to call my doctor today just to give her a FYI. At the very least, pehaps she will order some blood work (thyroid studies, perhaps?). I've been extremely stressed after I developed the facial shingles....worried about the pain....but not wanting to make a big fuss over it. I tried Cymbalta 2 years ago and I had weird thoughts on that. I work in Medical Imaging assisiting MD's with bx of liver, lung, bone for cancer. It's rewarding to concentrate on another person for a day & remind myself things can be worse. I had a bad day yesterday and that's how I stumbled on this site. Glad to meet you and thanks for responding to my post! God Bless!!
Lisa26 said:
Hi, I ran across ur post this morning!! Funny because I am also 40 an RN and was diagnosed 4 years ago..its crazy who we meet on here. I don't have any advice on the hair loss but, I think you need to add a couple other meds to ur combo..the best combination is an antiseizure(which u are on), a muscle relaxer like baclofen, and a antidepressant like cymbalta..I take trileptal 1800mg/day, baclofen 30mg/dayand cymbalta 60.mg/day. It is the best combination I have ever been on!! I function great...the only side effect I notice is some problems finding the word I want to say, and a little short term memory problems( I write everything down at work). I work in a pediatric ICU..Hope this advice helps with the pain at least..and I hope u find the solution to the hair loss!! Keep fighting!!
Hi, I too am losing my hair but I am on Tegritol. My first TN attack was in Dec 11 but I noticed my hair loss in October 11 before taking any medication. I have had a lot of other symptoms come up recently that are not TN related so I am being tested for other illnesses. Hormones/Thyroid are the first thing I would think of, but stress can also be a cause. My doctor is also sending me to a dermatologist. It is freaking me out too, which does not help the stress factor. I hope you find answers.