Thanks Tiffanie,
It does seem they are related and I imagine many people will fit certain characteristics of both SUNCT and TN, since both conditions can present in different ways.
Right now its midnight here and it is SO BAD, constant burning pain that will not stopped, with a nice series of sudden stabbing pains every minute or so. I've taken Lamictal, Lacosamide (Vimpat brand name for US people) and tramadol, for some reason it is managing to break through all that today. No idea how I'm going to sleep, until recently this was not an issue
I've been told about MVD and other surgical options, if it carries on progressing this badly I'm going to have to consider them. Thing is, if the severity stayed at one level and I had to control it with different meds, that would be fine, its just every month it is exponentially more severe and shows no sign of stopping. Don't know if anyone else has had this problem, where it started mildly and gets worse over time?
hi,
my daughter was diagnosed with TN by the local hospital and given Tegretol (carbamazepine) and Gabapentin.,which seem to keep the pain under control.When she had her first bad pain,she had a redness /rash on her face and neck -and her lips and face were quite swollen(think "trout pout" from botox-gone-wrong).I had the presence of mind to take a photo and later, when she saw a neurologist, he said it looked like an allergic reaction and mentioned SUNA/SUNCT.She also has always had itchy,irritated eyes,and I've always got cotton wool pads which i moisten at least once a day for her to wipe her eyes.She has hay fever,and a weird "red ear /red cheek reaction in the early evening ,usually when eating dinner,I wonder if all these things are related? I did wonder if she has more histamine in her system, which could cause all these problems.She has not been hospitalised since the first time she had agonising pain,and i'm told she can take these epilepsy drugs ad-infinitum,which is ok,so long as they continue to work, i suppose.She has a few hormone imbalances,caused by problems with her hypothalamus,and scoliosis/kyphosis-which i initially suspected of causing her face pain.She used to have lots of headaches when she was little.I don't know if she's grown out of these,or the face pain made her think twice about complaining of a mere headache.The hospital initially diagnosed TN because morphine didn't help with the pain at all,but the anti-seizure drugs did.
It could be a reaction to the Tegretol and changing to Topamax should be suggested to reduce the rash. Harmful rashes are one of the side effects of Tegretol, I know that all medication has side effects but not to be worse than the illness.
hi Ciaran, my daughter has no rash from the tegretol-it seems to suit her(makes her more drowsy than normal,maybe.)
The rash and swelling of the lips and cheek happened when she had her first bout of really bad sharp pain and wasn't on any meds for it.She got meds a while later when admitted to A+E,and the pain subsided overnight.The reason why we took her to hospital was because she had not eaten for days and eventually,drinking through a straw was becoming too painful-i was afraid she'd become severely dehydrated (it was summer).The GP made a house call and within 20 mins ,she was on her way to our local hospital who admitted her overnight and gave her gabapentin ,tegretol and acyclovir(because they thought it was herpes simplex,chickenpox virus -related).She's been on the anti-seizures ever since,and fingers crossed, has not had such bad pain since.Her face is still tender sometimes-and she often fears another attack.Then i "up" the meds for a few days and all seems well.For now,anyway.
X Beth
Hi Beth,
I understand the frustration of the the condition because the pain is severe and fear of the pain can be worse than the pain itself. Exploring ways to reducing the severity and cycle of pain takes time. I have been suffering from SUNCT/SUNA for over 6 years now .
One of the things that may be an additional symptom of a TN condition is swelling of the temple and worsening of eczema from the ear to the eye. Red blotchy skin. I'm not sure if any of these have anything to do with you daughters condition, but I had something similar.
I found that taking MORE EPA ( A fish oil tablet) for skin helped balance my skin and reduce the sever facial rash.
Like everything else we are looking for answers, maybe someone has the right one.
Ciaran
Hey All — after reading Ciaran's reply, I thought I'd also add in the suggestion for Beth about anti-inflammatory foods (which is more omegas and such, exactly what Ciaran is talking about) + might help to softly wipe/cleanse with jojoba oil over the eczema, blotchy, red and dry spots. It's totally gentle and can also be applied right over the eyelids too. Jojoba oil specifically mimics your facial skin's own sebum — which is why it's so great to use on the skin.
I just thought I'd add that in. It's inexpensive and very soothing. I'm so very sorry your daughter as joined us on this facial pain journey but has a wonderful, caring mother like you!! Hugs, Jessica
thanks for your valuable input,Ciaran and JessicaG !
Got to say that my girl has sp: needs and can become anxious at times, but the pain of TN beats anything she or I have seen before(And she has had major spinal surgery many times).My best friend came over when my girl was in pain-and friend left in tears(she's a mum of 6 and was always there when her daughters were giving birth and had never been upset like that before.)
I shall buy some omega fish oils and try the jojoba oil too-she does have a rash from her ear(sometimes inside it too) to her eye and across the temple, but it's on the other side of her face to the red ear/cheek and TN pain.That's what made the original docs diagnose post-herpetic TN from chickenpox exposure.
It's a horrible ,horrible thing to watch someone you love in such agony,and I'm so glad there is this site which offers support,practical help and so many lovely people ,such as yourselves,who really know how bad it can be.
Thanks again
Beth
Unsure: Something to keep mind is that nothing showed up on my MRI but since I wasn't responding to any medication and I was having unlivable pain, the surgeon decided to go in without it. He was surprised with what he found but had no problem taking care of the problem. Because he had to handle my nerve so much, he decided to pinch off my trigeminal nerve so I wouldn't wake up in more pain than when I went into surgery. I don't have any feeling on the right side of my face now and it does cause some problems (especially with my eye) but I'm not sure what choice the surgeon would have had besides putting me in a medical coma until the nerve settled down and I'm not even sure that would have been an option. Just keep in mind that if nothing shows up on the MRI it doesn't mean there is nothing there.
Unsure said:
Pls: interesting that you mention about the blood vessel. One thing dr matharu wants me to have is an MRI of my trigeminal nerve in order to look for exactly what you describe. I am having this, however to save money I am having it on government health care so there is a long waiting list. I was told that it can cause sunct in exactly he same way it causes TN.
Maur: you misunderstand, sorry if my post wasnt clear. The anti-epileptic drugs work very well and have basically saved my life so far. Luckily I respond well to them with not too many side effects compared to others. It is just that the condition is so severe now that they are not fully controlling it any more. I have missed doses of lamotrigine before and the pain that comes on is beyond words. I would be unable to function at all without them.
I was up until 3am last night so work is going to be a struggle on 3 hours sleep today. As ever thanks for the supportive words everyone.
Thanks PLS, I'll keep that in mind. I am eventually having a scan of the trigeminal nerve and I REALLY hope they find that blood vessel thing there so they can fix it and remove the problem.
I'm at the max dose of my med Lacosamide (brand name Vimpat for US people) now and it is not working. I thought it was for a bit but its 10pm and the burning pain is becoming ever more intense as per usual. Going to be a lack of sleep tonight, again. Got tramadol to take the edge off but I really don't like taking it
I want to increase lamotrigine, but the side effects are too much going towards 400mg.
Am likely going to schedule another appointment with Dr Matharu and see what else is available. Perhaps I need to discuss surgical options as well, because it just keeps on getting worse. If it stayed at one level and I had to try different meds then that would be ok, but I know eventually it will be too severe to be controlled by any meds and then what happens? Not a nice thought for the future.
Hi I also see Mr Matharu in London at the UCLH. I have had it for about 9years it was originally diagnosed as TN. I do have triggers with SUNA just like with TN. I am on a cocktail of Gabapentine, Tegratol and Lamotridgene I still get flare ups and I get into a panic and want to scream and shout but of cause I can’t move my head or mouth for fear that it might strike or that it has strived and not let go in which case tears just poor down my face you know what I mean but I must say that thanks to Mary I have found you and I am glad that I have found somebody else with it and I mean that in a kind way. How do you get on with Mr Matharu and his nurses. I am not due to go back until October.
What foods have you cut back on or given up. Do you drink. I’d love to ask you so many things as there is so little info on SUNA.
Keep in touch if you can
Be Strong
angiegirl
Unsure said:
Thanks for the replies all of you, its good to feel welcome and I will try to contribute as best I can in the coming months.
dodo: if you have red eye, tears, etc it may indeed be SUNCT. I was told that TN does not have these autonomic symptoms. The background pressure/aching pain is constant, 24/7, sometimes a bit worse or better but is never gone. Then there are short (1-2 seconds) extreme stab/electric shock pains which occur anywhere from 10 to 100s of times a day (usually in clusters of 10-20 at a time).
jessicag: My pains often feel like a severe pressure and aching type feeling, like my eye is about to pop out. And if you have no triggers as well, SUNCT could perhaps be possible. I didn’t realize until I saw this real expert in these conditions recently how closely related it is to TN. by the way anyone in the UK should consider going to him he does private appointments in London - Dr Manjit Matharu
When there is an extremely bad attack period (like right now), my mind goes into a sort of hypomanic state with racing thoughts. So makes it impossible to sleep sometimes.
The thing is, I’ve had it for two years and every month it gets worse. I keep increasing the amount of medications to match it but have now reached the max dose of the top-level drugs for this. I have been explained that there other treatments i.e. surgery, nerve blocks, etc so will probably need to consider something like that later this year.
Anyway I am off to try (and fail) to sleep - will check back this thread tomorrow.
I’ve had tn for going on two years and also struggle with sleeping and going to work with drowsy effects from the drugs. Would you consider the mdv operation?
I suffer from SUNCT and I understand the frustration and pain levels that you are going through. Although TN and SUNCT may be considered similar they are completely different. I'm not giving any medical advice just a layman's opinion, you can draw your own conclusions from what I say.
I wouldn't recommend the mdv operation because in order to stop the pain for SUNCT they will also have to sever the nerves that control the muscles on you jaw, the sensory nerves on your skin and eye.
You may be permanently left with a drooping jaw and eye, no feeling in your skin in one side of your face.
The drugs may make you drowsy or memory problems but it took over 5 years to find the right combination of medication to give me some relief from the pain.
Last year I wouldn't have been able to say this but now I can, keep trying. I wear a hat all the time, keeping the nerve warm and protecting from sun and wind.
Hi I have sunct and trigeminal neuralgia had brain op at 34 years old for tn now going for brain implant is there others like me rubbish life of pain .
.
Yes I had a failed MVD. They found several compressed nerves, but handled them too long. I had cascading complications from it. I had life threatening pneumonia twice and it ruined my non-smoking lungs. Woke up from surgery and couldn’t swallow for a year and a half. Still have pain, now wear an oxygen cannula on my aching and stabbing face. Many issues from the surgery, plus I still have original pain.