Confused after seeing dr matharu

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Hi everyone well as I've talked about on a previous post I saw prof zak who said I didn't have trigeminal neuralgia well I recieved her letter a week before I was due to see her (not her fault..admin) in her letter she had put trigeminal neuropathic pain with some symptoms of SUNCT/SUNA but because my sinuses get congested and runny on both sides I don't fit criteria so I was feeling very frustrated as she wanted me to go to group psychology meetings but no other treatment options? So in my desperation I payed to go private to see Dr Matharu saw him last Thursday and have come away a bit miffed he said he doesn't no for sure what I have but that I don't have tn he thinks I have either facial migraines..newly persistent daily headaches or hemocrania continua?? He said I've got to stop 3 of my meds continue to see prof zak till my appointment on the nhs with him comes through which could be up to a year and to tell prof zak that he disagrees with her diagnosis of trigeminal neurapathic pain??? Omg I think I've completely confused things! So saw prof zak was completely honest told her I'd seen him etc she said each consultant is guna say you have whatever area they specialise in which I agree! I asked her about nerve blocks or sphenopalatine gangling blocks she said I can see her and her neuro dr chong in a joint clinic as it's not 100% sure what I have she also has given me indomethacin to try for month which will rule out if I have hemocrania continua. So that's what's been happening...I feel completely confused as I still think I have tn what on earth am I to do????

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  • Posted

    Hi,I'm in the same situation as you.i have tried everything I know of.and the pain is getting worst no matter what I do.iv had this pain for 3 years now EVERYday.what systoms do you get?.mine is down both sides of my face and at the back of mouth gums..like a constant headache,burning,swelling

    Thanks

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    • Posted

      Hi am so sorry your having all this stress my symptoms are congested runny nose with burning throbbing tingling sensation through sinuses and roof of mouth..my two front teeth are super sensation. My whole head and face throbs. When in a flare right side of face tingles burns and I get sharp shoots of pain through jaw mouth and ear it's an absolute nightmare. Who do you see? What is your story? I'm in my 4th year with this and I can't take much more. I'm having a ct scan done of sinuses and back of skull to look for something called sluders neuralgia..bone spurs can dig in to a nerve in your nose and cause alot of the symptoms I have so just to rule it out. I'm also seeing a neurosurgeon in 9 days see what he says. I'm so sorry your suffering so much..here if you need a chat xx

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    • Posted

      Im in the same boat as you. can not take much more..I struggle to talk to anyone now it's that painfull.its all I can think about,this horrible pain. iv seen all the doctors,Mir,ultra sound on face. Botox,wisdom teeth out. meds. nothing has helped,..and when I ask my normal gp for help. they just give me a different medicine. the only time the pain goes for me is when I goes to sleep. painkillers bring it from a 10 to a 8.i hate my life at the moment. because f...ing pain holding me back from my sports and traveling I want to do

      I hope you find a cure,thank you for reply.and I'm here too if u need to chat

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    • Posted

      Have you had a firm diagnosis from a neurologyst. What did they call your pain.     With you getting pain down both sides of your face at the same time it must be awful. Do you get strikes like bolts of lightning.     I was told last week when I was in Mr Matharu's clinic that there is a nerve block available and although it may last only a month it can give things a chance to calm down or give you relief to discuss what the next plan is.  Can you eat, take your meds and drink, clean your teeth or visit the dentist.   Try sleeping well propped up and on your back.   Dose any foods or smells set it of.    Have you had any relief from taking drugs.     I only have experience of drugs that are used for help with TN and SUNA. It's not easy to understand. I try to diagnose what's happening to me everyday and I can't understand things and it is so hard to try and describe what is happening and what you feel.   Well as you know you just can't.        Do keep a pain diary / journal. That's a must.  Write in it your feelings, worry so, pain score anything that comes in your head and give the diary a name, I call mine Buddy you can then relate to something and the best is they listen to you and don't interrupt you and you can tell them anything you want.    Think about it !

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  • Posted

    I also saw Prof Zak and then DR Matharu and prior to this I had been diagnosed with TN.    I had my pain diagnosed as TN around 2005 and it was a few years after that I saw Prof Zak and DR Matharu. I have now been diagnosed with a rare condition called SUNA for short, (short lasting unilateral neuralgia form headaches with Autotomic Symptoms )   I have terriable trouble trying to get my head around all of this, it was hard enough trying to understand TN.       I am trying to find someone else with SUNA or a support group but I am not having any luck.  Most GP and Dentists have never heard of it, there is no information about it.  Morphine dose not help the pain, it could make it worse.  It's a nightmare.   To have another sufferer to talk to would be very helpful for me and them. 

    I understand what you mean about you not knowing what's going on.  

    What meds are you coming of.      Do you have Migraine headaches.     I was diagnosed with Migraine headaches but not flashing lights and being in a dark room and feeling sick type.     Keep me posted and I am here if you want to chat.    

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