Sharing my Daughters Story... from a Daddy's perspective.

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Reading everyones stories on here about how they are dealing with this horrific condition is hard to do, I thought I would share a Helpless Dad's perspective on this and hope it offers something to someone / anyone out there who is trying to support a child with this and doesn't know what to do. YOU ARE NOT ALONE. There is no advice in my story, it is just an account of where we are. I am going to try to keep this updated with any findings we have and support we are given.

My daughter is 11 and has been suffering with this since New Years 14 and we are at the end of our tethers in trying to sort it out for her. Doctors first off tried treating her for sinusitis as the initial symptoms shown were very similar, 3 weeks of this and no end of Sudafed etc and nothing touched it. A weeks course of antibiotics was tried to no avail and eventually we were referred to Rotherham Hospital's Rapid Access Clinic where she was seen and later admitted for a couple of days for tests.

Numerous blood tests, MRI's etc and a further 8 days stay in hospital and we are no further forward, she is on Tramadol, Gabapentin, Paracetemol and Amitriptiline and nothing is getting better. Her pain is constant and the shooting pains are ranging from every few seconds to every minute or two at best. Until she wears out and goes to sleep where the sharp pains seem to give her a break.

This morning thanks to more googling by my wife I feel I have turned a corner in how to deal with this myself, I know that may sound selfish but its tearing our entire family apart, as her Daddy its my job to make her better and this is a job I am not equipped to do. We have 2 other children an older and younger brother for her, its my job to keep food on the table and make sure that everything still ticks over, its my job to keep supporting my Daughter in this seemingly endless battle against an invisible pain thats defending itself against anything we do. My feelings are those of frustration that my little girl has to go through this, my feelings are of helplessness that I cannot do A THING to help her, my feelings are of guilt that I have upset her to try to get her to try and beat this herself. She IS such a strong willed little girl and I know she is still in there somewhere but it feels like someone took her to bits and didn't put her back together properly, she is broken.

I find myself now accepting that (unless the appointments we have next week turn something up) this is her life, this is our lives from now on until a cure or management process can be found for her. Supporting my little girl is all I can do now, I have to reside myself to the fact that I alone cannot fix her again. I am not sure what the future will bring for her, I can only hope that somewhere in there, there is some peace for her and her fellow sufferer's. I hope the feeling of helplessness will eventually change.

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  • Posted

    Hey

    Firstly you should massively praise yourself for how incredibly understanding, caring and strong you yourself are being. Trying to console someone with 'an invisible disease' shall we say is incredibly hard, testing and mostly hard to understand the pain and feelings of something that you havnt experianced yourself. I have a massive amount of sympathy for your poor daughter as I can relate to what shes going through but let me tell you of all the drugs ive tried the one an only thing that has got me through so far is the support of my husband and family. What a wonderful supportive family your little girl has an know that the support and care your giving will be making a much bigger difference than you know.

    I hope you manage to find a way to calm her TN attacks soon. I myself take tegretol and duloxetine along with the use of an e-acu pen which helps me manage my pain until my neurologist can come up with a suitable permanant answer. However I dont no if this wilk be of any help to you but before I found a way to help control it I literally tried anything so might be worth a go but it sounds strange.. i saw a neurologist for the forst time in january and he took my hand and massaged the pressure pointbetween my thumb and forefinger, dont get me wrong it doesnt take the pain away but the brain cant focuson more than one area of pain at a time, it doesnt hurt either you basically just masssge the pressure point as a way of distracting the brain from the pain and it helped in calmong me down as I would literally break down during an episode of pain. So if anything it may just help calm your daughter. He also used the e-acu pen that I mentiined before which I have now purchased and it worth its weight in gold. It temporarily gets rid of the pain. It works like a tens machine and sends a small electric shock to the nerve an temporarily stops the nerve sending pain signals to the brain thus relieving the pain. You run the pen along the face an it send a high pitched beep out when out when it detects an over active nerve. It can take a few goes to get used to the initial shock to the face but its not painful, well not compared to what shes used to dealing with.. its been a god send but like most things its quite expensive.

    I hope that the above helps or atleast if anything just gives your daughter, yourself and your family hope that it will get easier with the right help and of course with the fantastic support that you are so clearly already giving her.

    Lots of luck to your little girl an all of you as a family. X

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  • Posted

    iam sorry to sound negative i am surprised that a doctor would give your daughter a strong painkiller that does not work and an anti epileptic that can work then paracetemol which you shoudlnt take with an anti epileptic then amitriptilyne which cannot be taken with an anti epileptic as it cancels out the pain benifits.change your doctor and your pharmacist should have picked on this . and yes i am a sufferer .
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  • Posted

    Have you looked into TN surgery? There are about 5. Or 6 surgeries that take the pain completely away and you get to get rid of the drugs completely. All neurologists and docs do is give you drugs. In other countries they give you one of the surgeries and don't rely on thedrugs like they do here. Check it out on line...trigeminal neuralgia surgery. They are all fairly quick and simple but don't last so you have to do it again. I did radial frequency thermal surgery and am free of pain and off all drugs, until it comes back which shouldn't be for years.

    There is an answer for your family, keep looking, researching, asking. There are lots of people with this condition who have found ways to live with it painlessly.

    Best of luck and success!

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  • Posted

    Hi, I have TN for over 10 years. At first I didn't know what it was just like you all. At first the pain wasn't too bad. It was like a bad toothache but it comes and goes and never did stay long enough for me to worry. After about 3 years of that it finally came and stayed and the pain got worse and worse. It was then I was diagnosed with TN. I do have the electric shock pain. I have been on 5 or 6 different medications. I am currently taken Trileptal 300 mg twice a day. Sometime the pain is so bad I take it 3 times a day. For the past two weeks my face has been electrocuted by this horrific pain for 30 minutes to over an hour on every attack. I know of one lady who also has TN. She told me she has been pain free for the past 14 months by taking her medication along with applying Capsaicin cream .1%. I went and bought the cream and applied it on yesterday. I did not have a flare up except one time and during that time it only lasted about 10 minutes vs over 30 minutes like before. This morning while brushing my teeth I had another flare up. I put on Capsaicin cream and the pain stop after 5 minutes and I have not yet had another flare up for today. I am applying the cream 3 times a day and continue to take my medication. It seems to work for me. If you decide to use Capsaicin please read the instruction. This cream is very very hot and will burn your skin if you use too much. The cream comes with a .025%, .075% or .1% potency. I decided to use the highest potency of .1% because my pain was very intense of electric shock to my face. Please use tissue paper to apply and do not get it in your eye. I can't say enough how this cream has helped me the past two days. I hope it will help you too.  Good luck!!!
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  • Posted

    Hi Dad

    I really understand how you feel My Daniel has TN and i have felt so helpless at times as our children relie on us to beable to make things right, and this is not possible and that makes me feel so frustrated at times. Daniel is 24 and has learning problems and Autisum so life is difficult enough but now having to cope with this aswell, has been extemely difficult and it effects the whole family. Daniel has not coped and so the whole family does not cope and i pray that eventualy they will kill the pain dead and Daniel can eventualy get his life back, but it truely is a difficult thing to cure, and so rare to get when you are young Daniel has had it now for three years, and i have traveled to different hospitails to try get him the right care and treatment it has been a very difficult journey. please keep me posted on how your daughter is doing i pray their is a light at the end of what seems to be a very dark tunnel.

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