Good Morning..
I was diagnosed with TN two weeks ago on my left side, I have been taking the carbamazine & that has helped. The last two days have had earache in my right ear and have had sensitive to touch scalp to the right side quite painful & feels like pins & needles .. is it normal to get it so quick on the right hand side & would it normally affect the head ?
I guess it's here we go again .. have a great day
Hi Teri sorry cant help with your question I have only been suffering with this about six weeks and started on the same meds as you a month ago I am on 200mg at night and 100mg in the morning just started the am dose this week as I could get no let up during the day. My symptoms are mostly left sided with some jangling occasionally on the right. Hope your having a good day Karen xx
Hi karen thanks for the reply .. I have made an apt to see the doc this afternoon, I am sure he will just say up the meds, but to be honest I am fed up walking around like a zombie, and not sure if my family can take much more of my "fluffy head" ;-)
its just i can't touch the right hand side of my head right now ( it hurts ) .. anyway, apart from that , today is a good day !
How are you coping with the pain & meds etc karen ?
wI just lost my reply.....once more better since taking the morning dose I was getting no relief at all from about midday, so an improvement. I am a bit concerned about a rash on one of my arms and some mouth ulcers but it doesnt look bad enough to be serious....doomed if we do and doomed if we dont. Good luck with the gp hope it goes well xx Karen
Well Teri, I will throw this out for whatever its worth. I'm currently being treated for shingles on my face, opposite side of my TN. So in researching shingles, it discussed people who have pain with no breakthrough to the skin but many people will suffer the pain you describe before it erupts. So...don't know if that would be a possibility or not.
If you aren't already journaling your symptoms, it may help when visiting with your health care professionals especially when we have 'fluffy heads"..lol, it can be easy to forget.
Sorry for your additional trouble...hope the doctor visit will help.
laura, Good morning & thanks for the reply .. the doctor thinks maybe I "could" have shingles, the pain on my scalp is symptomatic of shingles, but I have no rash yet .. so have to wait & see .. if the rash appears I have tablets ready & waiting .. if it doesn't then I am back at the doctors on Monday.. Oh happy day's .. have a positive weekend Laura ;-)
If the pills are an antiviral you may want to start them unless the doctor has advised otherwise. Catching it early can lessen the severity of the event. From my reading, it sounded like some people do not get a breakthrough...so might be something to consider.
I was given a steroid cream, antiviral and antibiotic. I have discontinued the antibiotic due to itching all over but I got treatment within 72 hours of the first appearance of it (which was exactly a week ago to the hour!) so I believe that has minimized the spread for me.
Hang in there! = )
Hi Teri
I am left-side TN2 and have a lot of scalp pain at the back of my head and sometimes strange sensory things going on on the right side too. Mine started with earache and it continues to ache more days than others even though I take 3,300 gabapentin and have recently added trileptal and nortriptyline for burning. My scalp is very sensitive to touch, or sometimes even a single hair! and especially to cold and even air currents in a house. There is a convergence of trigeminal signals and cervical signals (c2-3 innervate back of head) And not all docs seem to know this. I don’t have shingles. I am slowly, slowly, slowly adjusting to my altered brain state from the meds but I don’t like it. However, I like the pain less…
Wishing you the best on this TN journey.
Bellalarke
Hi Teri,
First let me say we are all here for you as a sounding board. All have and some continue to go thru what you are experiencing. It depends have you discussed this with your doctor he can try to answer those questions. You can still have shingles with no rash so I have read on line. Its tough enough to have TN on one side , I understand I also have bilateral TN thT came 13 months after MVD on the left. i sleep with a heating pad wrapped around my head every nite now since Nov 2012, same sx’s as you describe, diagnosed with right sided TN in Jan 2013 Your doctor will be able to better answer that question for you. Keep us posted and hang in there Teri
My Best
Hi Teri,
I have the ear pain and sensitive scalp but all on the same side. Once in awhile, I get stuff on the right side but I wonder if it is in my head (get it?) or just referred pain? As far as the foggy head, my neurologist went through a ton of medications before finding the cocktail that made me the least foggy. I am still "stupid" and sleep every afternoon like a brick but I have figured out the timing to have it not affect my family quite as badly. I cook dinner in the mornings and just do the last bit in the evenings. . lots of crock pot foods. I even take regular recipes and adapt them to the crockpot. I get as much done as possible before lunch time. It isn't much because I am so much slower and my brain isn't what it was, but we have adjusted. But in the past, I was hammered. Just push back with your doc and try other meds. I switched from carbamazepine to oxcarbazepine and am doing better. I take that with another med which I don't like but my doc is reluctant to take me off of it because I have been through them all. When I was on Neurontin, I couldn't even drive I was so out of it but some people do really well with it. Just know you are in the driver's seat! Good luck to you. I am so sorry you are having to go through this but so glad you found this community.
Hi Teri,
I have pain very similar to yours. TN2 mainly on the left side, but also on the right side. Before I found a medication that helps, I had scalp pain also. It was like pins and needles and a crawling sensation all over my head. My head was sore to touch and even putting my head on the pillow hurt. I also had a constant crushing feeling on my head and face.
Sounds awful, but I am now on a combination of meds that have helped. I take 50mg of amitriypiline and 600mg morning and night of trileptal. I am able to work four days a week in an admin job, but I do have to check everything I do to make sure I haven't made mistakes and I also keep a note of all small jobs to make sure I don't forget to do them.
I'm sure you will find something that helps you soon,
Anne
Good morning ALL and thank you for the replies .. the sensitivity on my scalp is not so bad today, no rash has appeared, so I am thinking MAYBE IT'S NOT SHINGLES .. I will go back to the doctors tomorrow and see what he thinks .. you know when you are in so much pain you tend to forget when all this started, how it started, and more importantly when will the Day arrive when you not feeling so spaced out, and look in the mirror and think you can see yourself once more ... That's my goal.. have a lovely Sunday all ...
guess what ... I have a rash but it's all over, so I doubt if it's shingles , i have been on that carbamazine for 2 weeks now, so was wondering could it be a reaction to that ? I am getting bored with this now ;-)
Teri, to be on the safe side you need to have the rash checked out. Mention Steven -Johnson Syndrome to the medical professorial that checks you. Much better safe than sorry. Glad it's not shingles.
Hi Teri, Jackie is right. Call your doctor about that rash it could be something more serious or maybe too much sun. Stay out of the sun and give your doctor a buzz.