Pain while eating

Posted , 6 users are following.

Very quick question for all those TN sufferers who have experienced this aspect of the condition: Can toffee be liquidised and still taste the same??

Seriously, though, for the first time this morning I had pain while eating. With every bite of food, which was toast, it sent a bolt of pain into my face. I've only ever had that once before when eating toffee, and I now try to avoid it (one of my life pleasures!), so I thought it was a one off but it seems not. 

So, how do you cope and not waste away, I have PLENTY of wiggle room before wasting away by the way, but how do you maintain a healthy body weight? I know there are supplements out there but as a nurse who has not only tasted them when the need arose but also having fed them to poorly patients I know that most of them are truly awful both in taste and texture. 

The thought of pureeing or liquidising my meals in the future takes all the joy out of a good meal, it's a prospect I find depressing to be honest. And as lovely a bowl of soup is it just doesn't come close to a satisfying steak!

I need a mental hug more than anything, but advice would be welcome.

Thanks and best wishes.

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10 Replies

  • Posted

    Hi Susan,  I have pain when eating and drinking and have ended up in hospital on a drip as I get dehydrated.  I find the only thing I can eat when its really bad is icecream and to drink, milk does seem to help, I drink through a straw but even that is very difficult sometimes.  I think it must be the fat content  of milk that somehow helps.  I have never found anyone else who finds milk helps.  I also have progressive MS which has caused the TN.

    It won't always be painful and I am sure that at some time you will be able to have a toffee, it will be a real treat!!!

    Wishing you Good Luck with this awful complaint.

    Sally

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    • Posted

      Thanks Sally, 

      It's been an hour or so since the pain stopped, but sadly no toffee in the house!

      I have avoided icecream as I get pain with the cold and brain freeze too. I usually have hot milk which does seem to help as does placing something hot against my face when the pain is really horrific (usually when it affects my left eye or my eyebrows).

      MS is a cruel disease, I wish you well.

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  • Posted

    Hi Susan

    I am sorry that you are struggling. My Dad has this too and at one point was losing weight because he couldn't eat. It was the pain relief and then gamma knife treatment that alllowed him to eat again (although it hasn't cured it).

    He had to drink through a straw and there were times when he couldn't talk!!

    On a lighter note..... homemade caramel - melted butter sugar and cream then boiled to thicken tastes just like a runny version of thorntons special toffee. There was a little pot left over after my husband made caramel ice cream and I couldn't leave it alone. Give it a try for a lovely sugar rush :-)

    Take care, the lovely people on here will be able to give you lots of advice x

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    • Posted

      Hi,

      As much as I love caramel (anything sweet and sugary or good chocolate too!!) it just isn't toffee!! I always associate toffee with my stepfather's dad, I have fond memories of sharing his tin of toffees with my siblings before cutting down his homegrown rhubarb and then dipping that into sugar, frankly I'm amazed we have teeth at all!

      Thank you so much for mental sugary hug.

      x

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  • Posted

    Hi Susan, I'm so sorry you're in do much pain. At one point I thought "how am I going to eat?" But decided to plow through the pain and it would subside. My hopes that maybe I'd drop a pound or two subsided along with the pain. At present I'm pain free. Hallelujah! I hope you will be pain free for even just a day or two. Any relief is a God send. So here's a great big hug for you Susan.??

    All the best,

    Jewell

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    • Posted

      Hi, Jewell,

      Hug greatly appreciated, and I like your approach to dealing with the pain! Wiggle room too?? LOL. I think I might have to give in to the pain, though, when it is really bad in my eye I have gone whole days without eating and drinking but still waay too much wiggle room!

      Hugs.

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  • Posted

    Hi Susan,

    I also get pain when eating and haven't figured it out! But that's what I've come to know as TN..it comes and goes whenever it wants, causes a jolt of pain at the most inopportune times leaving us feeling desperate, alone and frustrated. That is why forums like this are so helpful in validating that it's real! I empathize with you and am sending you a hug!

    Take care. Mary

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    • Posted

      Hi, Mary,

      Hug received with grateful thanks. You're right about TN, it is so unpredictable. Yesterday, at work, I was explaining something to a patient and mid-sentence I had a run of stabs in my head and couldn't speak for a while, once I could I had to explain why I had 'left the room' so to speak, very embarrassing. All my patients were lovely yesterday and several said that they don't always appreciate that nurses can be suffering too. 

      It's surprising how few people have even heard of TN, I try to give a brief explanation when I can to as many people as I can, hopefully with more awareness there will be more understanding and support.  I am gradually working out what works and what to avoid, I suspect that toffee will be on the 'list of things I should avoid but will dice with death when feeling brave'!!

      Hugs

      x

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    • Posted

      Susan,

      I am a Social Worker in the medical field and it is difficult because the focus is to be on the patient but that can be difficult when your in pain and trying to concentrate on what they are saying or trying to be compassionate when you are in pain and don't want to hear about their pain ugh

      I find that I need to take breaks, I can't meet with someone for too long, I need to change what I am doing which thankfully I am able to do with my work.

      It is amazing how few people have any idea what TN is especially in the medical field.

      Today I got a jolt while I was with a new patient and I said wait a minute and looked in my bag to change position which helped and then found one of our new pens which I gave to her, I don't think she realized what was going on because she kept talking at least it was helpful for her lol

      Thanks for your support, 

      Mary

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