Posted , 4 users are following.
I am 14 and I need sleep to function for school!! However with my TN pain I am constantly coming down through the night to get hot water bottles... can anyone help and suggest a medication. As I am not getting the epilepsy medication until June and I can't cope with the pain any longer
1 like, 20 replies
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sandy5221948 lucy26108
Posted
That makes no sense to hold you off till June for getting meds to help control the pain! Your parents need to speak up for you. To have those pains at night makes me wonder if it could be cluster headaches. Those headaches are just as painful as TN, but occure routinely at night, and lasts for hours. They are caused by the Trigeminal Nerve, too. My doctor couldn't decide if I had TN or Cluster Headaches because they are so much alike, but he told me to go to the ER, or to a walk-in clinic and request they try oxygen on me. I never did that because I live so far away from one of those, but I found an oxygen tank online, and I bought it. It took my headaches away within minutes. I'm not saying to buy a tank from an individual, but if your doctor would give you an RX for one tank, you could try it and see if it works for you. They only cost $15 in my area. I've been pain free for months now, but if they come back, I have my oxygen ready. Your pains are only going to get worse.....you need to try anything that isn't going to harm you to avoid that pain! I wish you the best...and I hope the adults around you understand how painful this is, and do what's necessary to take away your pains!
lucy26108 sandy5221948
Posted
My parents don't understand how much pain I am in....
lee12629 lucy26108
Posted
lucy26108 lee12629
Posted
My parents don't understand how much pain I am in. Even when I tell them multiple times a day. I give up
angiegirl lucy26108
Posted
Hi Lucy I've had TN/SUNA for around 15 years. Who diagnosed your condition was it a Neurologyst, if not then you need to see one. Do you get striking pains in your mouth, teeth, face or burning pains. Can you eat ok and drink. Do you live in UK. You can't wait until June if you have been diagnosed. You need the drugs now. Get asecound opinion and for people that can help go online and search TN UK it's the Trigeminal Neuralgia UK Association. They have a help line. Your parents can do this for you and you will get help and advice from people that also suffer. I really hope you get some help. Ask mum or dad to phone them. Try them.
lucy26108 angiegirl
Posted
The neuriologist said she is positive it is TN. I am having an MRI scan on wednesday anyway. And then my next appointment is June where she will discuss medication. I live in the U.K. yes. It's just hard to cope with school.
sandy5221948 lucy26108
Posted
It blows my mind that she is sure you have TN....one of the most painful afflections in the world, and she wants to wait till June to start you on something to kill the pain! My ENT diagnosed me with TN, gave me Gabapentin, and sent me to see the neurologist. My neurologist said it was impossible to know the difference between cluster headaches, and TN. Not even an MRI tells them that. To me....it's criminal to think you have TN, and she did not give you something for the pains that are well known for being called suicide headaches! As I said before, I have cluster headaches. I don't know why they call it that, when it's my face, and eye that hurt me worse than my head. If you were my kid, I'd be in that doctors office pronto.....getting you something for pain!
lucy26108 sandy5221948
Posted
My parents don't understand how much it hurts me, last time I said something about it all my mum said was "just wait until what they say Wednesday" all I am going is for an MRI. They never discuss on the day the results
angiegirl lucy26108
Posted
Hi Lucy, What are you doing for the pain apart from hot water bottle. Can you drink and eat without pain. How long have you had it, is it on the right side of your face. Have you told your parents about TN UK . They are very good, I have been with them for years. If I may offer you a little advice, don't drink anything cold it's best to drink warm things even water. A draw is good to use during flare ups of pain. You will learn little tricks. I am usually awake till late, do you use Facebook. Go onto there and put in OUCH that is a head pain site and there are lots of us sufferers on there at all hours of the day and night that will try and help you through flare ups of pain. Try it, see what your parents think.
lucy26108 angiegirl
Posted
I try all different types of tablets. Nothing works. The only thing that gets the pain down a little is a hot water bottle. But it can only do that if it burns my face. Yes, my face does really hurt only on the right side... is that commen?? I don't really talk to my parents about it because they don't understand the pain I am in. They just say "stop texting me about it, I can't do anything whilst your at school" they don't understand. Yes I am on Facebook. And yes I can be up until really early in the morning. I'd say my face really hurts for about 5-10/12 days a month. And my ears, I can't even count how many days my ears hurt. But even if it is only 5 days a month. My parents don't acctually understand how painful it is. I have to go to school in pain because all they say is take paracetamol. The amount of times I have told them that paracetamol doesn't work is rediculous.
sandy5221948 lucy26108
Posted
Honey, you are exactly right, NO pain killers help with this pain! Please show your parents the articles about this disease being called the "suicide headaches", and "the worst pain known to mankind". It's far worse than giving birth...which I'm sure your mom can relate to. If you have to...talk to someone at school about getting you one of the medications that work. And no, it's not pain pills! Seizure medication works for us, and that's not the kind of pills that you get hooked on...it just relieves the pains. Demand that somebody listen to you! And call that doctor yourself and demand treatment...no need to wait on an MRI. I"ve never had one and my doctor treated me for 3 months with Gabapentin.....thank God! My heart breaks for you!
lucy26108 sandy5221948
Posted
I've tried every pain killer I can... nothing works. It's so hard to concentrate in school. My levels were top grade 6. Now they are down to a grade 4. As when any tests or lessons go on. I am bound to have pain. I have an MRI on Wednesday. And my neuriologist said nothing can be done until then. Unfortunately my next appointment after that is June. So I probaly won't be able to get treatment until then. She said something about getting me epilepsy medication but not until I have had the MRI. Unfortunately I have my mocks 2 weeks today. And I am so unprepared because I literally cannot concentrate. I don't tell any of my teachers because they will probaly think it is an excuse to not listen. But they don't understand what I go through on a day to day basis
lee12629 lucy26108
Posted
lucy26108 lee12629
Posted
It's my mock exams so I don't think they could delay them🙁 X
lee12629 lucy26108
Posted
lucy26108 lee12629
Posted
sandy5221948 lucy26108
Posted
Yes, yes, yes. That is exactly what you need to be on. It takes a while to kick in, and you may have to adjust the dosage to fit, but that is what works for me. You still have breakthrough pains, but not as severe. DEMAND that medication when you see the doc on Wednesday. There is no reason to wait any longer....it sure won't hurt you, and it could be a lifesaver for you! Prayers!
lucy26108 sandy5221948
Posted
Thankyou, I've heard different reviews on the meds. But unfortunately they cannot discuss my MRI on the day and I have to wait until June ( my next appointment). So will probaly discuss meds then. I just want a miracle…. I have my mock exams in two weeks and how am I meant to revise/concentrate when I have this awful pain. It comes and goes when i least expext it. It has now gone for 3 days. But it is bound to come back in a couple of days/weeks.If not that, then my earaches will come back. It's so hard to be in school+ have this.I am so happy I get to talk to people who have the same condition as me. Xx