I have Trigeminal Neuralgia or I thought I did after seeing several Doctors and being diagnosed with it. Then I went to the UCLH and was re diagnosed by Mr Matharu, has anybody else seen him and been diagnosed with SUNA. I am in the middle of a flare up and although I have had it from about 2004 I am all on edge and frightened as its pattern has changed. Anybody else feeling like this at the moment as I could do with a pain buddy. Now 2700 Gabapentine a day, 300 Carbamazepine, 500 Lamotridgene. I can think ok and function ok but like everybody else it's the fear. I have heard about a very exspensive honey called something like Hana ! anybody use it with the B12. I also have to sleep sitting up in bed so I don't get much sleep as if I lay flatter as you go to get up you get a strike. Can anyone chat
Hi Angie
I can't speak to SUNA (just looked it up for the first actually) but my TN has changed symptom wise quite a bit in three years. The medication I was using is becoming much less effective and the search continues.
I was on Carbamazepine and now I have low sodium levels in the blood so dropping the dosage looking for improvement. Gabpentine (Lyrica(?)) also less effective so the two main sources of relief are in trouble.
Now the medicos tell me there are issues with the Parotid gland as part of the mix as well. They tried to get some cells with a fine biopsy needle and achieved not enough cells for an acurate diagnosis, and an infected wound source, and a swollen left cheek which has made the whole face more sensitive.
Next try in a week with a REAL core sample size (that is if they can keep me strapped down long enough).
Seems choosing just where the nerves are causing the issues is a real lottery. Most issues seem to be lower on the head and this is right up at the ear level.
I am having enough trouble getting medicos with experience with TN without changing the diagnosis at this stage of the game.!!!
Sorry I can't offer any type of knowledge on SUNA and for getting off topic with my issues but I will watch here to see what I can learn, Problem then is the direct injection to the brain to try and to keep the info where I can find it again.
GOOD LUCK
Hi,
I looked into a variety of possibilities for the pain I had been experiencing on and off over the last 10 years or so, and initially decided that it was probably Cluster headaches. I thought this because I had suffered with Migraines over the left side of my head since teenage years and the current pains I get were (and are) focussed in my left eye. The pains seemed to fit best with CH. But then SUNA also seemed possible. I got nowhere with my previous GP so changed surgeries (many other issues not being addressed too). Needless to say my other issues got sorted out and I am now on appropriate medications for them. But the eye pain had been put on the back burner as the other problems were more important to me at the time. However, in the last year and a half I noticed that the eye pain I had been getting changed. I had also noticed stabbing pain/electric shock like pains and tingling/numbness over other parts of my head and face (worse on the left). So a visit to the doc and description of the pain and hey-presto TN. I had actually ruled this out initially as most of the literature says that TN is most likely to occur in the mandibular or maxilliary branch. My pain was, at first, confined to eye. It soon spread elsewhere, my teeth felt as if they were on fire and my jaw had been punched repeatedly.
I am now on Carbamazepine and have had the Amitriptyline dose increased (I take that for the other health problems) and so far there is an improvement. When the pain flares up in my eye it only lasts for about a day whereas before it would last for 6 - 7 days relentlessly. It does still wake me up but now if I get the medications right it is less prolonged and for the most part less severe.
I can sympathise with your being frightened as the pain from TN is evil. But there is hope. There are many options once drugs have become ineffective. SUNA too has options for treatment. Research as much as you can and, as I now do following another forum member's comment, set your alarm and take your medications on the dot. It does help.
Personally I think there is little difference in the descriptions of the various atypical headaches such as CH, SUNA etc. They do just seem to be a variation upon a theme and all are excruiatingly painful and on a par with TN in that regard. Fortunately there is a great deal of research being done into these types of pain irrespective of their cause. There is light at the end of the tunnel (even if it does make the pain worse, at first!!)
Best wishes.
Excruciatingly, tut!
Hello what is UCHL? Sorry if I'm being dim! Also I've never heard of SUNA could you tell me more please. It was my previous Dr who diagnosed TN but then I didn't have a flare up for years. My current GP hasn't a clue if it is TN but says it is congruent with the symptoms of TN. I'm waiting to see a Neurologist, but am interested in hearing more about Mr Martharu. When the pain is quiet you live in fear that something will trigger it again!
I believe UCLH is the name of a hospital in California. SUNA is Sudden Unilateral .... I forget the rest! But it is descriptive of a specific type of headache. Search this website and you can find out more.
Best wishes.
Ok, so I just checked and UCLH is University College London Hospital! Not California, whoops!! CH is Cluster headache. SUNA is short lasting unilateral neuralgiform headache! There's some excellent information on this website. X
Thank you so much Susan. I must admit I did wonder if it was an American Uni Hospital. I have been meaning to research SUNA this evening, but didn't get time, but do not feel it applies to me anyway. Thanks for the info though! X
Hi Angie, I know exactly what you mean when you say that you live in fear of the next episode happening. I've been having acupuncture for the last couple of months following a particularly severe flare up, and thankfully it all quietened down, until last night. Went to bed and thought I'd lie flat instead of my usual 2 pillows. Big mistake. I felt a faint twinge almost immediately, then another. By then it was too late. A full on episode came on, popped more lyrica and trileptal, then more. Then another huge episode. I ended sitting up for most of the rest of the night. Ok again today but very tired. It was very cold last night, so maybe that was part of it. I live in Victoria, Oz. By the way, the honey is called Manuka. I haven't used the honey or the B12. It is a terrible thing we have, but how wonderful to be able to chat with others who understand what we go through. Best of luck. Patricia
Okay, Mr Matharu. He is a Consultant that has done a lot of research at the UCLH. If you look him up you will see he has done a lot of research arch and he has written a lot of medical papers. SO, I asked my GP for a referral to Profesor Zack she is the Medical Consultant for TNA. UK and she is at The Dental clinic at London. I saw her and she walked with me to. The UCLH to see MrMatharu because she said that there was more than TN going on, That's how I got with him. He also cares for a cluster Headaches. Have to go now. Sorry will try and continue tonight." Take Care
Thank you that is really interesting. I will do some research of my own now you have explained. That is really kind. I want to see a specialist that really understands TN and can help! Thank you Angie for taking the time to explain this, it means a lot x
Hi I am in the middle of a flare up now. You are on medication I have not tried. How long do you have to wait for them to kick in the ones I am on can take 3 days or more which is no heLp when you are in so much pain. Still waiting for the DR to decide about giving me B12 injections.
I am afraid to say there is no instant pain relief. My GP has prescribed me a morphine based drug to take when the pain becomes unbearable! Sorry to hear you are in pain you have my full sympathy!! Take care x
Hi I did try to get back yo you but we had a massive storm and it knocked our electric out so I lost all my notes to you.,,
where do you live. I'm in Cambridgeshire so I have a trip to London it is usually a days job to go to the UCLH. My DR or going to contact them for me tomorrow. I was supposed to go on holiday on Monday but my Husband said its best that we give it a miss. I feel so disappointed as I had so much trouble trying to find a hotel and it is a special year as my husband and I have special birthdays this year. I know it's best to cancel as if you are ill it's best to be at home I think. Do you avoid any types of food, I avoid loads.
I was given morphine and MR Matharu said that I was to come of it as it will make the head pain worse. I was taking the morphine for my back and he said that I would have to decide which pain I could cope with , worse head pain or back pain. Aparently us poor sufferers should take no opioids.
my GP was amazed. Did your Consultent say anything about it or have you not seen him yet. Do you think morphine helps, let me know. Have a good night.
We have just had the storm and it flooded the dinning room. I live right across the other side of the country from you on the Herefordshire / Gloucestershire. I can't eat chewy foods and can't load my fork with food as I can't open my mouth very wide. I can only eat on the right side of my mouth.
That is a real shame about your holiday! We went to Crete in May as we needed a break, as we'd just lost our dog. We thought the heat may help with the pain, but it didn't! Also I had to sit on the plane with a scarf wrapped around my head as the AC made the pains worse! I enjoyed the break and change of scenery but it was a very low key holiday as I felt poorly with the pain and the medication. It does affect my husbands life very much too!
I haven't seen the Neurologist yet and my GP has confessed he knows nothing about TN. So that is interesting about the opiates. I haven't needed to use it yet, as he prescribed to use only when I next experience a head splitting attack. I now have bad lower back pain, but my Bowen therapist has said this is due to my jaw problems. When the jaw is out of alignment it puts the whole body out of alignment. There is just so much to learn and consider. Night night x
I also have dogs and although my husband walks them now as I am on crutches due to lack of balance and back problems I can't imagin life without a dog. I have 2 Rough Collies like lassie. They know when I am suffering . You must of been very sad due to the loss of your dog.
No dinner tonight every time I put the teaspoon in my mouth it did not like it due to the pain. Back to soup and yogurt although if I leave breakfast till about 9-30 I can manage porridge. Then mornings are my best time.
good night
I have very similar issues.
Left side of my mouth in completely numb. This varies from minor to massive and the left top lip feels like the dentist has gone mad with the needle.
I can only chew on the right side of my jaw and have issues with quite a few different foods as well. Just can't get them where I can chew them.
Food often remains between jaw and cheek on right side. Very sensitive to salt but no issues with hot (as in chilli etc)
I am told what ever they try the numbness with never be reversed.
I am in Cornwall about as far as I can get from good treatment however I have my GP well trained now.
OK..that is my tuppence worth!
Ray
Hi Angie, While I'm good, I take 125mg Trileptal and 75mg Lyrica 4 times a day. I set the alarm for when I'm asleep. If I have a bad flare up I up the Trileptal by another 450mg and another 75mg Lyrica. That usually does the trick. It works quite quickly, usually 30 min to an hour. If still not working, I might try more Trileptal. Then sleep!