I have read some of your stories and thought I would join in with all of you to hopefully get some answers.
Our daughter last year was complaining of ear pain and symptoms of vertigo. She was prescribed, meglazine, valium, vicodin, nasacourt and claritin. After those did not work, she was told that she had allergies and to stay on sudafed and nasacourt. After that did not work the doctor gave her antibiotics, at least 3 different times. After 6 months of this we were referred to an ENT specialist. We saw two of those and then we were referred to a Neurologist. The Neurologist last month diagnosed her with TN. He put her on Carbatrol. She was mush, literally. They changed her medicine to Lyrica. She is still having alot of pain and her Dad and I feel helpless. Please, can anyone tell us any information that we have not done for our daughter? She seems so young to have this.
Thank you soooo much for responding! Yes, they had her taking sudafed at one time. Our general practioner thought that she had sinusitis and/or allergies. We did have an MRI taken with and without contrast. The neurologist called and said that the MRI looked fine. We do have a follow up appointment with him on May 8th. She is taking Lyrica right now and I just feel so bad for her because she is still having pain. The Lyrica does not make her as “out of it” as the Carbatrol did, but she still has the pain. She takes vicodin sometimes more than twice a day at 500 mg. a dose. And sometimes all the vicodin does is just put her to sleep then she wakes up with pain again. The pain is a constant dull pain, which she says that she has actually gotten use to, it’s the intense sharp pain that comes on during the hearing of different sounds or wind, etc.
We did hop from Carbatrol to Lyrica and had no idea that there was a problem with doing that until Natalie got a really bad headache and I started looking online again and found out that you have to be gradual when changing. When she was taking the Carbatrol she said she felt like she was drunk or having small symptoms of vertigo.
Thank you so much for your input and valuable information. I will start keeping a journal on paper. I have been keeping it all in my head, but with everything that has been going on…it is a good idea to keep a journal on paper. Thank you so much!
Thank you so much for your information. It truly helps to talk with people about TN and to know that we are not alone.
This certainly has been difficult for our whole family. We just felt so helpless and at times we were so frustrated because no one seemed to really know what to do. We are a very close family and we try and find humor in most things, so we are keeping our household as normal as we can. I will make sure and try to keep her stress levels low, as low as I can for a 16 year old. hahaha I will let the high school know about what’s going on with her and if she is having any problems in class, I will definately talk with her teachers. She will be a Senior this coming year, so we will really focus on making it as stress free as we can.
Is there a difference between a regular contrast and a high contrast MRI? She did have an MRI, they said, with contrast and without contrast. Is that the same thing as “high” constrast?
I am responding because your daughter’s symptoms were exactly like mine when I was first diagnosed. You are your daughter’s best advocate. We get desperate looking for a “cure”, not realizing we’re just making things worse (like from side effects). I’ve been down that road and have found, at least for me, that staying functional and eliminating stress is the best medicine. Be aware of what each drug is doing to her, and ask the Dr. to take her off things that make life worse. Even though I still have pain, I handle it better with non-drug therapies. Being drugged all the time was robbing me of life and causing severe depression - making the pain worse. With both of my flare ups, I have gotten better within a couple of weeks of the start of summer break. (Keeping busy with pleasurable activities and no school stress). This most recent flare has actually become more tolerable now that I am off Fentonyl and reduced my oxcarbomezapine (with my Dr’s OK). I do have bad days or hours, but I handle them with pacing, hot packs, a little rest, meditation, staying active with pleasurable activities, and a single dose or two of short-acting pain killers (darvocet-N). Oh yes…and avoiding triggers that make the pain and sensations worse.
I wish the best for you all!
PK
Lots of info, but I’ve gone from 2 or 3 functional hours per day to 10 or more.
I have been offline because I recently went back to work so just saw your post. I am so sorry about your daughter but glad you found this site. It will be a good place even for you to go when you feel helpless and need a virtual shoulder. Did you notice under Groups on the task bar above that there is a group for TN sufferers in their 20s? I would think you could get some advice from them, even though she isn’t that old. I think she is the youngest on the sight.
Good luck to you and here’s hoping she has some pain free days.
I’ve been offline also. I had MVD surgery on the 27th. But I just didn’t get on line much the week before.
To confirm my initial diagnosis, the neuro tried me on Lyrica. It didn’t work and swelling of feet and legs. She changed me to Tegretol and I had almost total relief in a day. I had to increase some but within a week I was under control. But I did have a contrast MRI at the beginning and it was negative. And with your daughter being so young, I would think the doctors would have ordered that test.
After a relatively pain free 4 years with a few periods of increased pain that came rapidly under control, my pain increased suddenly in Oct and I wasn’t able to control it. Nartotics and a max increase in Neurontin over time (I had changed from Tegretol about 2 yrs ago), I still was not under control. I had extreme screaming bouts of pain. But then I started ganglion nerve blocks and that helped. But I decided on the MVD surgery. I had another contrast MRI that was negative. But the doc found a vein wrapped around the nerve. And although I still have face pain, it appears to have improved on Monday. So I am optimistic.
Also try Vit B. My neuro, the pain center surgeron and the neurosurgeon have all told me to take Vit B. And rest is extremely important. I can tell a big difference when I am tired.
And I can’t imagine having one’s child suffer. When I got this, I started praying for uninsured and those poor everywhere you may be suffering. Again I am sorry she is going through this and I’m sorry you as parents have to watch that.
Thank you all for your very infomative and caring responses. Thank you so much for your thoughts & prayers. My daughters name is Natalie.
We had a set back with the Lyrica. The Lyrica was making her symptoms of pain worse. Natalie had never really had headaches before and now with Lyrica she was having migraines. Her Neurologist said to take her off of Lyrica and he would prescribe Trilepital. So we were slowly weaning Natalie off of Lyrica last week, when on Saturday she got the flu. With a temperature of 102 and aches & pains, we treated as a regular flu. (plenty of rest, fluids and ibuprofen) Sunday was a cough, by night time it had went into her ears. At 6 a.m. on Monday morning we are taking her to emergency to be told she has an ear infection behind her eardrum. She was in severe pain at this point and the doctor gave her Zithromax antibiotic (250 mg.), Dilaudid for pain (2 mg.) and Ibuprofen. At 3 p.m. in the afternoon her ear was draining liquid that was with blood. I called the doctor and they said there was nothing that they could actually due because her eardrum had burst and she was already on medication for the infection. At 6 a.m. this morning (Tuesday) we took Natalie back to emergency because there was still more blood and fluid coming out. She is to stay on the Zithromax, Ibuprofen, and now has antibiotic drops (10 ml) of Cortisporin and (10 ml) of Antipyrine & Benzocaine for the pain too. She is also taking 500 mg. of Vicodin about every 4 to 6 hours.
I HAVE SERIOUSLY NEVER SEEN SO MUCH MEDICINE IN A HOUSE AT ONE TIME IN MY LIFE!!!
Oh, and here’s the kicker…I had a hysterectomy on Tuesday and I think I am going to go crazy! Oh,…and did I mention that our 12 year old daughter Allison has Viral Laryngitis with a croupy cough and fever!
In about a week I should be feeling better to get around and do more advocating for Natalie, like getting a copy of her MRI with the results, asking about who to take Natalie to that is close to Northern California that is a top specialist of TN, etc. I know that I am just starting this war, but I will not stop until Natalie has relief.
I feel for your daughter. I have been dealing with this since 2007 and even had surgery in 2008.
I was pain free for one year an now its back. All I can say is stay on top of your doctors, look up every medication they give her, ask all the question you can and everything she can not dealwith the pain, take her to the ER and show them, tell them make them listen so that she can be heard and get the real help she needs.
Best of luck to her and you. I know that this effects the whole family and she suffers the most.
GO BE WITH YOU.
I’m so sorry about Natalie. I wouldn’t wish for anyone to have TN. She is so young and I do hope she finds her comfort zone amidst the pain. I truly believe that it is up to the TN sufferer what works best for her after trials and errors. You have to take lyrica awhile for it to work. I had headaches when I started taking lyrica and after awhile, it worked for me. Other meds are way too strong that it feels like you just had a lobotomy. Lyrica is taken by fibromyalgia patients and for some reason, doctors say, it works for TN sufferers. The aura of the pain is still felt but at least I can keep it in check. When Lyrica doesn’t work anymore and I am having a severe headache, I take my migraine pills, imigran. Neurontins, I found out thru the internet are also used for bi-polars and that’s probably why I find it too strong for me. I hope Natalie finds her cocktails so she can function in life.
My name is Kim and my daughter Ali was diagnosed with TN in January 2009 she was in so much pain right away. The medication would only work for a day or two and then the pain would come right back. We would up the medication and add more and she would just stay asleep all day or be in pain. We had to remove her from school and she stayed home all the time. We decided after seeing many doctors that we would like to have the MVD done. My husband and I started talking with Pediatric Neurologist and we could not find anyone who could help us in our state. All the adult Neurosurgeons would not help a child. I searched and then I found Dr. Benjamin Carson at Johns Hopkins in Baltimore MD. He looked over her records and scans and said he could fix her. We traveled to Maryland in March 2009 and she had her surgery done on the 24th. When she woke up in the PICU she was pain FREE and has been ever since then. She is back to school, dancing, and being a teenage girl. She is 14 now and loving life. We still worry that it will come back but we are just so happy that she is healthy and happy today
Please contact me, I would love to talk with you. I have met some other wonderful women who also have children with TN. One of the girls was 8 and the other is 3.
Hi Cindy im 24yr and i was told i have TN when i was 22 yr i also remember the same pain when i was 15 or 16 i use to think it was a bad head ach and when i moved my head or would touch my face i would get the pain untill i was told i have Tn i thought they were bad head achs,i was told i was to young to have Tn but i dont think the doctors understand Tn fully and think that only over 50s have it lol tell her to hang in there we are here to help.my mum is beside herself tryn to help me so is my fiance they get so mad at the doctors coz they dont seem to care or know how to help me its hard to see my family see me go thru this and be helpless to help me but all u can do is be there for her and support her,im open to caht to her if it makes her feel beta sumone close to her age also has it and that she dose not feel alone,there are many thing that can help with the pain such as heat packs alot of ppl find this helps alot to take the edge off i also have it deep in my ear and this really helps anyway takecare .
Mina xx
Thank you so much for everyone responding! Sorry that I have not been on here for some time. Natalie is a Senior in highschool and is living life the best she knows how at this time. The doctors have prescribed only Percocet for the pain at this time. She has pain on a daily basis, but some days are more severe than others. She has not done well at all with Lyrica or any of the other medicines. After two and a half years, she has been on quite a few meds! We have a doctors appointment in San Francisco this next week with a new doctor and we are hoping for more answers. Natalie plans on graduating with her class in June and is looking forward to becoming a Registered Nurse. The only thing that I and her Dad can do at this point, is keep pushing forward to help Natalie in everyway possible and to let her know that she is not alone. We will update everyone after the doctor appt. next week. In the meantime, I hope that all of you stay happy and take care! Cindy
Hi! I’m trying to remain positive amidst always feeling like I’m sleeping or yawning my life away. I’m currently on trileptal, cymbalta, and lyrica. The addition of lyrica to the cymbalta and trileptal has made a difference in managing my pain. The longer I’m on a medication the more my body gets used to the side effects. Lyrica is definitely a sleepy drug (according to the neurologist). I take my heaviest dosages in the evening. I am a teacher and need to be functioning as much as possible during the school day. Talk to the school asap about a 504 plan. Your daughter deserves accomidations to get her through this time of adjustment without it affecting her education any more than it has to. A 504 can be put in place with a medical diagnosis. She can have extended time, shortened assignments, take state tests over several days, breaks when needed, etc. While protecting her health-wise, don’t overlook protecting her educational future as well. You may have already looked into this, but a lot of times we, as parents don’t think about all of the secondary issues when we are just trying to make it through the day.
Best wishes,
Robyn
Cindy Davy said:
Hi Ro,
Thank you soooo much for responding! Yes, they had her taking sudafed at one time. Our general practioner thought that she had sinusitis and/or allergies. We did have an MRI taken with and without contrast. The neurologist called and said that the MRI looked fine. We do have a follow up appointment with him on May 8th. She is taking Lyrica right now and I just feel so bad for her because she is still having pain. The Lyrica does not make her as “out of it” as the Carbatrol did, but she still has the pain. She takes vicodin sometimes more than twice a day at 500 mg. a dose. And sometimes all the vicodin does is just put her to sleep then she wakes up with pain again. The pain is a constant dull pain, which she says that she has actually gotten use to, it’s the intense sharp pain that comes on during the hearing of different sounds or wind, etc.
We did hop from Carbatrol to Lyrica and had no idea that there was a problem with doing that until Natalie got a really bad headache and I started looking online again and found out that you have to be gradual when changing. When she was taking the Carbatrol she said she felt like she was drunk or having small symptoms of vertigo.
Thank you so much for your input and valuable information. I will start keeping a journal on paper. I have been keeping it all in my head, but with everything that has been going on…it is a good idea to keep a journal on paper. Thank you so much!
