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Trigeminal Neuralgia

OH is taking oxcarbmazapine for TN, however is making him really sick. He also takes Baclofen, plus all the range of MS meds. He is waiting to have a surgical procedure - radio frequency rhyzolosis, but this won’t be until October. Has anyone any advice regarding managing the sickness? He has taken stemetil, but that is not working now.

He is really at the end of his tether. The TN is pretty constant, can be triggered by talking, eating, or just comes on in his sleep. have contacted MS Nurse, Consultant, GP Surgery. Have also contacted the hospital to see if the appointment can be brought forward and waiting to hear back. He can’t eat, this is a nightmare, as if MS was not enough for one person.

CBD oil can help TN.I get TN and its the worse pain there is.I have not taken CBD oil for it but i know people that have and says it can help the pain.worth a try i would think.I get it in a tooth i have the tooths fine but it feels like an abcess when it flares up.

TN is awful - i get it sometimes and it really is sore - want to bang my head off a wall…

Has he tried any other anti sickness meds? Cyclizine can be good although causes drowsiness, and can be taken alongside stemetil. Ondansetron is the gold standard and I believe is available in an oral form (I used to give it intravenously to my post op patients experiencing opioid nausea). Def worth ringing the GP surgery and seeing what else they can prescribe that is safe alongside the oxcarbmazapine.

Thanks for the responses, he had tried cyclizine, but nothing seems to work. Will try to get the ondansetron, the hospital gave him one that begins with M, can’t remember the name.

Have had a nightmare 24 hours, phoned 111 for advice and they thought he should go to A & E so they sent an ambulance. A & E said they couldn’t do anything, gave paracetemol and morphine by IV and then sent him home. At this point his BP was 180/100. He passed out as soon as we were home, it was truly awful, hit his head and had to dial 999. His BP was something like 77/44 and was unconscious for about 10 mins. I thought he was dying. The medics thought he would be admitted on both occasions but both times he was discharged. Phoned 111 at 12.15pm, arrived home finally at 7:45 this morning. We are both exhausted, OH is nearly 70, he looks, and is very poorly. He has a bottle of morphine which is to last 3 days.

In the last 24 hours I have contacted the MS nurse, GP, spoken to the TN Association (who have good info and advice), contacted the hospital doing the procedure, contacted his Neurologist.

However the good news is that having contacted the hospital were he is due to have the rhyzolisis, they are going to fit him in next week. So just need to get though a few more days and hope it works.

He does take CBD oil, I have just had the purple one delivered but not sure if he should take it as he is going to hospital next week.

Thanks again to everyone for the replying and for the suggestions.

I am so sorry to read of what’s happened.

Metoclopramide is likely to be the one you’re thinking of.

I am wondering, is he managing to keep down enough fluids, and peeing ok? Such severe nausea and vomiting puts anyone at risk of dehydration and its associated complications. Ice cubes or ice lollies are sometimes tolerable when drinks aren’t, may be worth a try.

best wishes to you both at this difficult time.

Yes it is Metoclopramide. It does seem to be helping, discovered it is about getting the timing right. During the night he took it, plus the morphine and oxcarbmazipine and baclofen. However he vomited the lot up. Let it a bit and got him to take the Meto. and and hour or so later the other meds. I think they should have admitted him to stabilize. Of course he is not taking his MS meds, or heart meds. either so that is not going to help. I have a major concern that they will consider him too ill to have to procedure next week. Where we go from there I don’t know if that happens. Yesterday I would say he had about a couple of tablespoons of soup, twice, nothing the day before and little the day before that. Apart from a couple of cups of mint tea. I am thinking that perhaps I could refuse to take him home, I just think I need some sort of plan. It is not our local hospital but they do seem to be caring. I just don’t know anymore. Thanks for taking the time re reply.

in your position I would certainly have a very low threshold for getting medics involved again via 111 or 999 if indicated.

Failing to pass urine and/or new confusion or disorientation would require urgent assessment as dehydration may provoke kidney failure, blood chemistry alterations and greatly increase his risk of contracting a urinary infection.

Calorie-dense drinks for the unwell such as Complan or Ensure may be useful; I believe they are stocked by most pharmacies and no longer require a prescription.

sending you both strength.

Thanks, will get Complan, def. worth a try. I dialled 111 again this morning, making it clear that I wanted advice not an ambulance, I can’t put him through that again. As things have not changed they are arranging for a doctor to phone back. I am going to discuss alternative anti-sickness. Thanks again.

I’m hoping things may be a little more settled.

kindest regards, Emma

Hi i have tn - (same as your husband would be crying at night he pain, couldn’t eat, touch my face, etc)

carbamazepine a nd oxyccarbamazipine we’re rubbish. You need to get them To prescribe to lamotrigine- It works quickly and is drug for epilepsy which quietens the nerves in the brain responsible for the trigeminal nerve. Frankly I have no idea why they haven’t prescribe this to him. It may take a couple of days for it to build in the system but then it works almost immediately .

xx

Thanks will see is I can find out about the lamotrigine. The MS consultant said the carbmazapine was the drug of choice, but he move to oxycarbmazapine because of the side effects. I don’t honestly know how is is coping with this latest development.

He had the op but they had to stop right at the end because of a rise in BP. he has a swollen face and is in so much pain. Can’t get any help, they suggest go to a & e. But he is refusing because our experiences in the last week. Feels like we are left to cope alone.

So sorry to read of how things are.

I would agree with the recommendation to return to A&E for medical assessment and pain management.

Ask that they bring the on-call anaesthetist to see your husband, as paracetamol + morphine have proved entirely inadequate for nerve pain of the magnitude that it prevents essential functions of drinking, eating, communication and sleeping.

It may be the case that they can add in further analgesics for neuropathic pain, apply a TENS device to the area or consider a local anaesthetic injection directly into the affected nerve (a ‘nerve block’).

In your position I would emphasise to them that he is entirely reliant on you for every aspect of care in his present condition and that his needs are such that he needs nursing and medical care in hospital - however this obviously depends on how you both feel about it all.

It is the drug of choice but the side effects meant I couldn’t tolerate either - Lamotrigine did the trick.

Hope he gets it sorted - I know first hand why they call it the suicide pain - please ask for the Lamotrigine - it’s worth a go.

M

Went to A & E again yesterday. They did not admit, sent home with more morphine and anti biotics. The A & E doctor was very good and empathetic, he was advocating admittance but the medical doctor seemed to over rule. Eating is agony for my husband, although the TN is not as active generally. Thanks to everyone who took the time to reply, will take on all comments and suggestions.

The saga continues. Husband collapsed again yesterday. 999, took 35 mins, and 3 calls to arrive. He was unconscious, low bP. sick, memory loss and incontinent. A & E did a CRi scan and x-rays. Scan showed old 2 old strokes, plus MS of course. They were prepared to discharge. I did not agree and they immediately said he would be admitted. This is the 4th 999 call in 9 days. His BP is going from high 180/100 to low 90/59 very quickly. They are putting this down to MS. Spoke to the doctor on the ward today who said they would keep him in for a couple of days, refer to pain clinic, neuro, review meds. I think they might be looking at epilepsy, as he was vague etc. He does seem better today, more with it. But something is going on, and I don’t think its all down the the MS

I cannot believe they were even considering discharge home after what happened.

very traumatic for you both. Sending hugs and hope they sort things out effectively.

Husband discharged yesterday with steroids prescribed by neurologist. Still in pain with the TN. BP fluctuating when in hospital and he felt dizzy yesterday when bP was high. Sick this morning before taking the steroids so it is not them.

I just read the thread and my heart goes out to you, my husband has also just started with Trigeminal Neuralgia and it is truly awful, I feel at a total loss in how to help or manage it. We are waiting for the current medication to make a difference but so far it does not seem to be. He also could not tolerate carbamazepine and ended up almost catatonic and unable to move from his wheelchair. I really hope you have found some improvement.