ongoing TN since sept 17

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Hi I've had TN diagosed sept 17 following intense headaches & burning pain (like shingles) randomly over scalp, facial bones, neck & left shoulder. I am on tegretol which gives moderate reflief, but makes me so tired & kind of foggy. I read somewhere that doctor should refer patients for mri after 6mths if symptoms still present - anyone else heard this? my main troublesome symptoms are really random intense headaches that last days & bad pain in my right shoulder particularly (like shingles burning pain not an ache) & i also get random "flashes" of pain in bones in faces, jaw, scalp, back of neck (not aches, like flashing stabbing or burning). I dont want to remain on tegretol long term because of the way it make me feel. Can anyone give me any advice, experience, or suggest what to do? Any comments, info welcomed. Thankyou x

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  • Posted

    Hi there

    I don't know if I can give any specific advice but would make the following observations. You seem to have a wide range of reactions in different parts of your head region, which is not common, although not impossible, with typical TN. If medication fails to deal with the pain, eventually a referral to a neurosurgeon is recommended; not necessarily to offer an operation but at least to review your particular case and the medication you're on. If this does not help secure some degree of relief for you then an operation might be the answer. At this point, an MRI scan would be definitely be done. An MRI could be done earlier if it was impossible to pin down the cause of your pain which seems to be widespread. It's a tough one but hang in there with tegretol if you can because, in spite of the side effects some experience, it gives pain relief to a lot of TN sufferers. Trust your medical team but also keep abreast of the literature, so you're in a position to challenge decisions. 'Knowledge is power' definitely applies to TN management!

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    • Posted

      Hi Colin. thanks for taking the time to reply. my main issue is i want to find a solution to stop the TN  so i can come off the carbamazapine. i am on quite a few meds for other conditions several of them are on the anti cholinergic burden scale(this means long term use of meds on this list can cause cognitive impairment/poss demntia in later life) which worries me. by solution i mean if they could find a damaged nerve or blood vessel putting pressure on a nerve it could be rectified surgically thus removing the need for carbamazapine.  I am seeing my doc tomorrow purely to discuss the TN & whether it's time for a neurology referral/mri to check for this. I dont want to remain on yet another med(carbamazapine) long term with bad side effects. if you think of anything else please dont hesitate to reply, you are right in saying "knowledge is power". thanks again x

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    • Posted

      Hi looloo

      I totally understand. The only thing I can add relates to a referral I attended last Monday at The London Hospital for Neurology and Neurosurgery. They made it clear that an operation was normally only done after exploring all possible options with medication because surgery is not without risks itself! If you read some recent posts on this site from other sufferers, you'll find some harrowing tales of unsatisfactory surgical intervention. But I get where you're coming from. I fitted after using carbamazepine and was rushed off to hospital. The explanation for this remains unclear - low sodium ion levels was one idea but others were suggested, too. 🤔 TN ain't for the faint-hearted, that's for sure!

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  • Posted

    I began with this last August.Iam 68 years old. Head pain at first. Then sensitive teeth. Now constant pain in upper and lower teeth. I had the upper teeth removed., out of desperation. Now, Iam sorry I did.  Also two lower teeth removed. Dentist said nothing was wrong with the teeth. She was right. Have had MRI, ct scan, X-rays... Can't find anything. Someone is missing something!!  Iam in such pain everyday!!  On Gabapentine, not doing too much good, but provides some relief. I find these Drs., want to keep sending me in circles. I have little faith in these people as time goes on.

        Iam sorry for your pain. If your med., provides some relief stay with it for now. I've never heard of two MRI. , but it seems when these neurologist and Drs., order a test they only ask radiologist to look for one thing.How crazy is that?? It will take forever to find the problem at this rate!!  

        Best of luck to you, keep hope.  Janice 91400

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    • Posted

      I sent you a message earlier but you haven't got it yet. Turmeric is a spice you can buy in a gel cap at any pharmacy. I take 800 mg in the am. It takes pain away for 12-14 hrs.  At night I take my prescribed med, Carbamazapine, I sleep through the side effects

      Avoid sugar, tomato;s anything with acid! Let me know if this helps. God's Blessings to you!

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    • Posted

      thankyou Vicki for taking the time to reply. I have an appt with my doc tomorrow purely to review the TN. I do not want to stay on carbamazapine forever more (see my reply to colin) due to its side effects. I will ask my doc about turmeric. thanks again x
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    • Posted

      Hi Janice. thankyou for taking the time to reply. I dont want to remain on drugs with bad side effects daily & long term so would hope my doc will refer me for mri or to neurology now. I am seeing him tomorrow to review the TN. I'd rather they find a damaged nerve or blood vessel putting pressure on a nerve as that can be rectified surgically, rather than stay on meds. x

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    • Posted

      I agree with you, I hope they find an answer. In my case, after all the tests nothing has been found. The pain remains. The side effects of the gabepentine leave me with no quality of life. I keep hoping for an answer.  My very best to you. Keep me posted. Janice.
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    • Posted

      I feel the same. Bad side effects on these drugs. I've had MRI, ct scan, and multiple X-rays. Nothing found. I'm losing hope. Drs. and Dentist say it's TN. Neurologist says it's not. A confusing situation. I'm 68 years old, don't have the strength to deal with this uncertainty.

       

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  • Posted

    I've never used fresh Turmeric I always use gel caps. I'm sure if you go to you tube & type it in you could fine out. 

    A lot of people use it in there cooking. Good idea though!

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    • Posted

      Hi Colin, Janice, Vicki. I saw my doc yesterday about the TN. he wants me to remain on the carbazamine  for now & see him again in a month. I have been suffering a bout of anxiety last 2wks due to work stress which made the TN go from a manageable level of pain on carbamazapine to going right up the scale again with terrible all day neuralgic headaches, left shoulder burning pain (not unlike shingles pain) & random short "attacks" of pain in my facial bone areas & neck (like eye socket, jaw, cheekbones, side of face where ear starts). I asked on here if stress can worsen TN, & asked my doc, both of which were answered yes. my doc increased my anti anxiety med 2wks ago & threw in a very low dose of lorazapem on tuesday which are now thankfully getting a hold of the anxiety, & the TN is slowly calming down to a more manageable level. my doc said if i get a day where i wake up with the intense neuralgic headache & shoulder pain (the worst symptoms for me when flaring) i can take a little more carbamazapine (eg half a tablet) as it does seem to dampen it down a bit - at least i can get to work then & not have to phone in sick. with regard to mri, his view is much like what Colin said; if they did find a trapped nerve or blood vessel putting pressure on a nerve, the surgery is not simple & is risky & can lead to paralysis, so they would only consider it if no meds were working to control pain or if they suspected other disease like MS.

      I am going to order some turmeric i found on the high streets leading chemist's website that has added black pepper as apparently (after i read somewhere) it helps the turmeric absorb better. It's 60 capsules 1 a day, so I'll try the whole course & see if that helps-maybe that may be a way of not having to rely on carbamazapine. trouble with that drug, apart from side effects you cant see, the more i take, the more tired & foggy i feel - not good for work.  I 

      i had a 2.5wk course of prednisolone steroids in december for a mild colitis flare; not only did it calm that down, it also made my TN soooooooooo much better! i got down to 1 carbamazapine tablet a day, but then it gradually worsened again since. i did ask my doc if he would try a 4wk course of steroids to try & clear it again, but he said prescribing protocol on steroids is tight - they only do it for serious illness like bad asthma or colitis flares for example & when there is no other less powerful medicine to use.

      Thankyou all for your help with this issue; if there is ever anything else you think of or have success with, please do chat with me on here.  I will let you know how i get on with the turmeric. I wish you all well, & hope you can manage your pain.x

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    • Posted

      Hi Looloo,

      I'm sorry to hear you going thru all this. I'm glad you found some relief with  the steroids. It's unfortunately most doctors may not see the TN as a serious illness to allow for  ongoing prescription of steroids. I've been able to maintain my pain level at 2 out of 10, since Jan. The intense headache can still come out of nowhere, (sometimes I wake up in the middle of the night with an intense headache above my right eye or top right scalp), but the TN sharp, lightning pain & searing ripping constant pain  have not come up. I stopped taking carbemezapine in Dec or Nov, due to low wbc. My neurologist then prescribed gabapentin, which did nothing for the pain, and only made me groggy, foggy, forgetful and depressed. I stopped taking it after giving it a month. My PC then gave me a prescript for Proponolol 10mg to help control the migraines and headaches, and in effect it has kept the TN attacks at bay. So I've kept up religiously with taking 2 pills twice a day. Now, the pain can come if I'm not aware of my pressure points. I can't stretch my skin or facial or neck muscles too much on my right side or lay on my head for too long on that side. Once I keep away from doing things like that, I'm perfectly fine.

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    • Posted

      Thankyou for your reply Deidra. Sorry to hear your plight with the TN too. I have had the turmeric capsules delivered now so am going to try them for 60 days & see how i get on. take care. xxx

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    • Posted

      Hi Vicki. I've had my turmeric capsules delivered now 1000mg with added black pepper to aid absorption, just hope they dont upset my bowels as i have ibs(d) & colitis. I'm going to try & take it after my evening meal. May i ask you how long it takes to see an effect from the turmeric in terms of pain relief? xx

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    • Posted

      Hi Vicky. i have just started my turmeric capsules a few days ago. can i ask you how long it took before you found any pain relief from them & is there a best time of day to take them?  Thankyou. x

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