Strange symptoms with ATN

Dansend · 08-07-2012, 02:01 PM

Quote:

Originally Posted by BethO2L

Welcome,, even though it's under these circumstances..

I have been a support group leader for many years and no one has ever described their TN the same way as I do mine...it may be that you really are having fairly "normal" ATN symptoms but how you perceive the pain and describe it may just be different than how others do.

I am not saying that your pain is any less or any less difficult to deal with,,I'm just saying that I would not loose too much sleep over your perception of it,,I would be more concerned about getting the pain manageable.

Most people with TN end up taking a "cocktail" of meds to control it,, especially as the disorder progresses.. I think that since you are taking Neurontin that adding Lyrica may be a good option to try and control the more Atypical pain....

Also,, are you taking Neurontin or are you taking the generic form??? I have found that with ALL my TN related meds,,I must take the real med not the generic...I find that the generic form of these meds do not work well for me...so keep that in mind.

I do take Neurontin and Lyrica together, which is unusual but for me they are very effective together,,so it may be something to consider. The best advise is to talk to your MD and see what he suggests...if you are tolerating the Neurontin well you can easily add to that dose. Raising it to 3600mg is well within "safe" ranges (I have been up to 6000mg but I don't suggest it!!!).
Another thing to consider is that Neurontin wears off more quickly that Tegretol...so perhaps breaking up your dose to 4 times a day instead of 3 might help.... It is very common for TN patients to change their med schedules to fit what works for them..so even if you stay at 2700mg daily if you break it up into smaller doses more frequently that could help give you better pain coverage...

Hope some of that helps...again,, I think your description of your TN is not that uncommon it's just not exactly how everyone else describes it...but then again no one describes it exactly the same way...

Good Luck and hope the pain becomes more manageable.....Beth

Thanks Beth, the advice helps a lot. This has been very frustrating to this point but I am learning to cope. I am on the generic form of Neurontin and it has made a difference. I just don't think I am taking enough and I'll have that discussion with the Neurologist soon. It's just 300mgs 3 times a day.

I am managing the pain as it is at a tolerable level, it's now trying to also manage the associated sensations. They actually seem to be on a schedule moreso than me.

Again, thanks for your post.

Dan

BethO2L · 08-08-2012, 02:04 AM

I always assume that people are doing the basics when they post here but I wanted to cover some things that you should keep in mind.

Always make sure to be taking a good B complex vitamin,,invaluable for helping to rebuild the mylean sheath around nerves,,,,a good multi vitamin complex with high levels of selenium,, get lots of sleep even if that means getting some ambien from your MD, it's well worth it,,,avoid stressers,,,get rid of aspartame, MSG, caffeine and as much sugar as possible and if you are a smoker try going to an electronic cigarette they work well and many chronic pain sufferers (like me) are smokers.
And here is one that most people don't know,,get rid of all tooth whitening products,,they can over sensitize the teeth and create all kinds of additional pain....if you are concerned about white teeth use peroxide and baking soda,,it works well

The last one I highly suggest that no one ever does is learn to meditate,,even if it's as simple as learning to regulate your breathing,,it can make an enormous difference in managing pain,,I honestly could not have survived if I did not regularly meditate. It can be as simple as picking up a CD at Barnes & Noble and learning basic breathing control to something that really helps you relax and breath through pain,,I believe it's a must for TN patients.

Good luck,,let me know if I can help with anything and if you need to talk feel free to private message me and we can try and connect sometime,,,,
I hope some of this info helps reduce the pain,,even a little......Beth

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
Strange new and not so new symptoms - help!	Blondi	Multiple Sclerosis	5	04-05-2012 02:31 PM
Strange symptoms please help	thebluerecluse	General Health Conditions & Rare Disorders	8	01-21-2012 05:27 PM
Strange symptoms from an un-likely victim?	hollyflower1207	General Health Conditions & Rare Disorders	1	11-25-2010 12:01 PM
MG and strange symptoms	BARBARA356	Myasthenia Gravis	9	01-12-2010 04:06 PM
Strange new symptoms	msarkie	Multiple Sclerosis	1	02-05-2008 11:05 PM

Site Navigation

NeuroTalk Online Support Groups

Strange symptoms with ATN

NeuroTalk Forums