The damaged nerves in my face affect my tongue, teeth, and the roof of my mouth. Any flavor, texture, or temperature difference causes murderous pain which lasts for days, hence the reason for my g-tube.
Because of this I cannot have anything in my mouth. I cannot chew & spit, or taste foods as so many others on this site do. I cannot even swish water in my mouth.
(Yes, it's painful just to have my tongue in my mouth and having to swallow my own saliva)
I am excruciatingly hungry 24/7, and endlessly, relentlessy thirsty, even though I'm getting sufficient calorie/water intake through the tube.
I feel tortured - I can't have a glass of cool drink or even a swish of water when I am hot, dry, and thirsty.
And there's no way to satisfy my hunger or even my cravings for flavor. I have not tasted anything since August 11.
My intense hunger, thirst, and flavor cravings are driving me mad. I dream I can eat and then wake up crying.
Is there ANYONE on here who has experienced not being able to put anything in their mouth whatsoever? I don't have the luxury of tasting foods and then spitting them out. How can I handle this???
(Thanks to everyone whose been so helpful in answering my many questions thus far!)
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Food-deprivation driving me mad - help!
- By jackrabbit
- Posted October 26, 2009 at 2:25 am · 9 replies
- In Home tube feeding (HEN, enteral nutrition)
- Shared with the public
9 replies
- Oldest first
- Newest first
- By Woeful
- Posted October 26, 2009 at 3:36 pm
- Report post
Jackrabbit,
I went from October 23rd of last year until end of February this year before I could put so much as a drop of water in my mouth. And yes, it was excruciating, particularly mentally. And particularly as I was released from the hospital December 14th, right when all the holiday food was everywhere. Then my father died and of course everyone stopped by with every time of food imaginable. I'd lock myself in the bathroom and just cry for hours, I missed food so bad. From my understanding, a lot of it is retraining the brain. Meals are a huge part of our culture and social interaction, so to suddenly have to give it up, without warning, it's truly awful. But over time the brain does learn to adapt, I think. Even though I get no nutritional value from food or drink (since I have no intestines), I can still drink and have limited soft foods. However, I've noticed sometimes I will go days (4 or 5) without eating anything at all and hadn't even realized it until my mother mentioned it. I would have never imagined such a thing a year ago, but apparently the brain eventually can and does adapt. It's just a long, slow process. Is there nothing they can give you for the nerve damage, to try and help dull the nerve endings so you can try at least a sip of water? My sister has severe neuropathy in her hands/feet from chemo and for a time she was on this medication (which was hideously expensive; her particular insurance didn't cover it) that helped enough to make it somewhat bearable. Have you asked your doctor if there's some kind of medication that might work like that for you? I've also heard of a procedure where they basically 'cut' the nerve endings so the impulses stop. Is that an option for you? (I don't remember what the procedure is called, but I know they considered it for me a few years ago after one bowel resection left my lower right side with "angry nerves" -- felt like a thousand bees constantly stinging me. My surgeon said give it a few months, that often the nerves simply 'burn out' on their own, much like a lightbulb, and the angry nerve pain would dissipate on its own. Otherwise, there was some kind of surgery he was considering. In my case, they did 'burn out' out so I didn't need the surgery, but I do remember the surgeon mentioning it as an option.
- By jackrabbit
- Posted October 27, 2009 at 1:50 pm
- Report post
Wow, you're the first person so far who truly understands what it's like to not even be able to put anything in your mouth at all...
I sure hope my brain retrains itself eventually...
As for medications... I'm hyper-sensitive to side effects, something I didn't know until I seemed to consecutively get the worst side effect from every med I was on. Most of the time we had no clue what was going on and it was quite frightening, until we would get the brilliant idea to look up the medications side effects and see if that was the problem, and lo and behold...
See the problem with where I live is doctors and hospital personnel do not inform patients of the medications side effects before giving them through IV or prescribing them. Then, the pharmacy's handout with the prescription only lists the most mild side effects. I think it should be illegal to not inform patients of potential side effects.
One example is, because I couldn't sleep due to stress, I was given Zopiclone (Imovane). The side effects (which I only found out afterwards) included short term memory loss, retrograde and antergrade memory loss, speech difficulties, and learning difficulties. Unfortunately, some times side effects are permanent, and they were with me. It took a long time to figure out what had happened to me - it is very hard for me to remember things, I began stuttering and finding it difficult to remember words for objects, and it is extremely difficult for me to learn new concepts, whether in math, science, or even computer technology. I forgot my second language - Spanish. I owned a horse, and suddenly I couldn't remember what she was supposed to eat, what her vital signs were supposed to be, or even how to saddle her up properly. It's been very difficult.
So, when I found out that the medications for nerve pain include side effects of memory loss, I wouldn't take them. Even if they diminish the pain somewhat, it is not worth it to end up a complete mental vegetable.
I can't get the nerves cut because I have trigeminal neuropathy and any procedure on the nerves would worsen my condition. There's basically one option left that I know of - getting an electrode implanted in my brain. Scary, but we're trying to find a surgeon.
Anyway, I hope that eventually my thirst and hunger gradually dissapate with time and that my food cravings diminish. Thanks for sharing your experiences with me... this has been so difficult and I really appreciate the support I find on this site.
- By Woeful
- Posted November 2, 2009 at 6:40 pm
- Report post
Jackrabbit,
Yeah, it's hard to go a lifetime of eating and drinking and suddenly you can't, without any advance warning or preparation. I wish I could offer you advice, ways to deal with it when it's really at its worst, but all I can speak to is my own experience. I just know over time the cravings lessened. And now, some of the foods I most enjoyed when I could eat, even the idea of eating them now makes me feel a bit ill, actually. Maybe it's a sort of defense mechanism by the brain, I don't know. I just know that, now almost a year later, I only rarely get food cravings and when I do, sometimes just a spoonful is enough. I also just realized, as I was typing this, that I haven't put anything in my mouth, or even thought about eating something, in 2 days. So yeah, I think the brain does get rewired. It just does so at its own pace (sadly).
- By Jesana
- Posted November 3, 2009 at 2:40 pm
- Report post
I have you tmj and moderate trmengal neuralgia flare-ups. I take lyrica and have taken neurontin but they don't make any difference i can sense . when the pain is really bad even my breath hurts my mouth and face . thankfully i only get bad flare-up a few times a year .
my favourite foods like cake and ice-cream taste different to me it is mostly the texture I taste and chemicals used to color frosting and cake sometimes burn my mouth .
I really hope you can get that surgery or find another way to relieve the pain .
- By FamilyofJoy
- Posted November 11, 2009 at 8:34 pm
- Report post
I'm very interested to hear this. My small son is not allowed to eat, ever due to an underlying genetic problem that causes gut issues. He is now 4.5 and we're working on teaching him about people who can't eat.
- By FamilyofJoy
- Posted November 11, 2009 at 8:34 pm
- Report post
I'm very interested to hear this. My small son is not allowed to eat, ever due to an underlying genetic problem that causes gut issues. He is now 4.5 and we're working on teaching him about people who can't eat.
- By FamilyofJoy
- Posted November 11, 2009 at 8:38 pm
- Report post
I'm very interested to hear this. My small son is not allowed to eat, ever due to an underlying genetic problem that causes gut issues. He is now 4.5 and we're working on teaching him about people who can't eat.
- By FamilyofJoy
- Posted November 11, 2009 at 8:39 pm
- Report post
I'm very interested to hear this. My small son is not allowed to eat, ever due to an underlying genetic problem that causes gut issues. He is now 4.5 and we're working on teaching him about people who can't eat.
- By fonz
- Posted November 16, 2009 at 5:49 pm
- Report post
I sure hope things are better in your life. I must say your lucky, you can swallow your own saliva. I don't have saliva. Nor do I have taste buds, teeth or half of a mandible. I haven't eaton by mouth in almost four years due to throat cancer, squamous cell carcinoma. After surgery/chemo/radiation from hell, I deal with it. It's the way it is. I used to eat, but alas, that was b.c. Oh well.
Mike
Add to the discussion