My husband was just recently diagnosed with TN (type 1). We're both in our 30's and we're both active and outdoorsy (lots of hiking, mountain biking, backcountry snowboarding, etc.) Needless to say, my husband's diagnosis has been devastating for both of us. His biggest concern isn't living in pain (although the pain is definitely testing him), it's how TN will interfere with our lifestyle. When he was first diagnosed he was prescribed Tegretol, which he said was like having a lobotomy. Then he tried Neurotin, but he experienced the same side effects. He took each one for only a few days declaring that he'd rather be lucid even if it meant he was in pain. He also has a very intellectual job and needs to be fully alert at work.
So, my question is, do you ever adjust to the meds? If so, how long does it take? What side-effects tend to linger?
The fact is anti-convulsant medications are meant to be taken for a length of time and NEED to build up in your system over time.
The initial side affects are exactly as your husband describes…BUT they disappear and your brain returns…as your body adjusts. The constant lobotomy feeling happens when you are on HIGH doses for a length of time.
Many people only try Tegretol or Neurontin for a few days…
Unless there is an allergic reaction, everyone should give their meds a chance to work, my rule of thumb has always been 4-6 weeks IF I’m seeing improvement within 10 days.
I was well managed on only 800mg of Tegretol XR for a few years, working, volunteering, active lifestyle, mom to two kids etc etc…
It took me a few weeks as I increased the meds to feel “back to normal”.
Every time you increase the dose, you also get to experience the side effects, but they do go away, they did for me.
Each one of us is different in how we react to the meds and what works best for us.
I hope your husband is able to find a med ( give it a chance) and find relief of his pain.
(((( hugs )))) , Mimi
I am so sorry that you are finding these meds so debilitating. I have benn off work since the end of November 2012 due to side effects from meds. I am an Educational Assistant in the largest high school in our province and need to be sharp. For some of us the side effects will plague us for the entire time we take them. I am presently taking 5mg of Baclofen twice a day as well as 400mg of Tegretol slow release twice a day. Not a lot but still enough to render me unable to work. I pray that you find a medication and dosage that will allow you to continue with life the way you know it.
My husband was taking very low doses of the meds - only 100 mg of Tegretol and 300 mg of Neurotin. The Neurotin literally made him pass out during the day and I had a really hard time waking him up, even after 3 hours of sleep. Both drugs made him dizzy and he'd walk around like a drunken sailor. His short term memory was horrible - he'd ask me the same question over and over, forgetting that he had asked it.
Could he be allergic to anti-convulsants? Are some people just unable to tolerate any anti-convulsant at any dose?
Melanie,
The very first time I was put on Tegretol I was not myself for a week, extra tired, dopey, dizzy, confused, short term memory issues…but as time went by my body and mind adjusted…
Usually relief on Tegretol can be found between 600 mg and 800 mg on average. That being said, we all react differently to the meds.
I would highly recommend him giving the Tegretol another shot, for at least 3 weeks, allergies to all meds are possible. Definitely read up on side effects and allergy symptoms so that you’re aware.
I tried Neurontin twice and it didn’t work for me, the side effects weren’t tolerable. Many people here use Neurontin successfully though.
Reassure your husband that he needs to give the anti- convulsants a chance to build in his system, the side effects should dissipate, if not or if he develops an allergic reaction you’ll know and then can change to a different med. Pain relief can be found with minimal impact on your life, mind at low doses.
As I mentioned at 800 mg my mind was clear, and I was fully functioning.
I’m on 1600mg now and take 2 other meds and my pain is resistant to meds and my mental clarity is out the window…I’m having mvd surgery next week to find relief as well as reduce the meds.
Many people find relief on the meds and after sometime are able to wean off meds and experience remissions…I had an 8 year remission!
Positive thoughts to you and your husband!
Mimi
I know the frustration of medication adjustment, too. I'm a real lightweight with meds. I was prescribed Tegretol at 200mg twice a day. The pharmacist strongly encouraged me to start with a half dose and work my way up (and not to drive the first week either).
So, at a 100mg twice a day it made me dopey and tired the first week. It did help give me relief with the pain that I couldn't escape with ibuprofen. However, when I'm having a little extra trouble, I do supplement the Tegretol with ibuprofen and very thankful it gives me relief. Perhaps he could try 50mg twice a day and build up.
I have adjusted without any obvious side effects. Once I was pain-free I would test the waters and wean myself off them and that would last for months. Pain forced me back on meds last June and don't see it changing anytime soon but I am able to work and function on a relatively normal level. Currently on meds for shingles so my system is a little wigged out from that so a little off my game right now.
It is frustrating to have your lifestyle interrupted particularly when you are used to being outside. As time has went along, I'm very guarded about being outdoors as the cold air or wind can irritate my face and its not worth it anymore. So looking forward to warmer days ahead!
It's great that you are trying to be informed and understand what he is going through! Kudos to you! = )
Melanie said:
Thanks for the info!
My husband was taking very low doses of the meds - only 100 mg of Tegretol and 300 mg of Neurotin. The Neurotin literally made him pass out during the day and I had a really hard time waking him up, even after 3 hours of sleep. Both drugs made him dizzy and he'd walk around like a drunken sailor. His short term memory was horrible - he'd ask me the same question over and over, forgetting that he had asked it.
Could he be allergic to anti-convulsants? Are some people just unable to tolerate any anti-convulsant at any dose?
Agree with the above. Your husband really needs to medicate for several weeks.he may say now that he would sooner have the pain than the s/e's, but a few years of pain is a different matter. He may need to take a work sick break to acclimate.
I agree about Tegretol being like a lobotomy! I would have to think REALLY hard to get an answer to any question anyone would ask me and it was so frustrating! Neurontin did hardly anything for me at all ... I finally found relief with Epilim/sodium valproate/valproic acid (why can't we all stick to one name worldwide!) and to be honest it didn't take long. It just depends on the person I think as to what works and how quickly you can acclimatise to the side effects. Usually the side effects calm down, I wouldn't have any hasty decisions as you could miss living virtually pain-free with minimal side effects by prematurely stopping medication.
Thank you so much for the all replies. My husband isn't the type to reach out for support - I am so grateful that I can reach out on his behalf. My heart really goes out to those of you who are dealing with the pain of TN.
We have another appointment with the neurologist today and during the appointment I'll mention giving the meds another try. He has the next 3 days off from work, so that should give him at least some time to adjust before he has to go back to the office. And his boss is very sympathetic - I'm sure it won't be the end of the world if he has a couple off weeks while he adjusts to the meds.
I was prescribed 100 mg chewable tablets. It took about a week or two as we worked our way up to 800 mg. I was convinced my body would never adjust but it did. I was initially dizzy and felt out of it, forgetting things and putting my keys in the freezer. I am now functioning quite well on the dosage. Good luck and I hope he finds something that will allow him to regain his active lifestyle. As a runner I was very frustrated in the beginning. I was also able to run again but not in the cold. Best wishes
I have been on Tegretol 7 1/2 months..........I have been on 1200mg for 4 of those. I am still tired, still forgetful, etc..... I guess I am used to it except I hate being tired! But it is keeping my pain at bay so I am happy. I have an office manager job and I do EVERYTHING since it's a small business. Yes, I screw up sometimes, but that's ok. I would rather be pain-free. I drink lots of coffee. I find that if I am doing PHYSICAL work and moving around a lot, it helps. But unfortunately, my job is SITTING all day. Good luck!
Good morning, i sympathize with your husband, I am newly diagnosed and was worried about the side effects too .. I have been on carbamazine and the side effects ( loss of memory, mobility etc ), I experimented and now take them in the morning when I get to the office ( rather than at night ),and this seems to work for me, as I fight through the side effects at work .. I am not so sharp at making decisions, but i find keeping busy works for me... I think he should give the meds another try ;-) have a positive day...T
I think everyone is different. I have never gotten used to the medication. I still feel like a zombie after a year and a half. The problem is that when the pain is very bad you have to give in to it as it can be unbearable. I'd take crack if I thought it would work. Good luck!
Before my MVD I was taking high doses of both neurotin and tegretaol at the same time. The side effects for me were pretty bad in that basic reasoning was difficult, if not impossible at times. I struggled to carry out routine tasks and keep up with conversations. However, such was the pain, I would have doubled the doses if necessary. Regards
I am feeling so nauseous on tegretol, just 200 mg three times a day. I don't know if I can continue with it. It does not block out all the pain either.