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Swallowing difficulty help & advice xxxx

Hi All x please can you help with some advice?? xxx

I’ve been having mild problems with swallowing for a quite a while - coming & going - mostly struggling when taking my gabapentin & baclofen.

They stick just below the adam’s apple bit - just above where the little bony dip is where your neck meets your chest - so it’s really hard to cough them back up - and of course they won’t go down - most uncomfortable!

For the last 2 months it’s got so bad they are now actually dissolving right there - tastes disgusting! Also more recently meat and rice are getting stuck there too! Fluids seem to go down ok x

Over this last week I’ve been waking at night choking on saliva and mucous that seems to be building up there now too - I have to sit up and drink lot’s of water to try to get it to go down. The choking is horrible - t’s getting really really scary now!

Anyway I just phoned my GP and he started with the fact I’ve got disc problems and that it won’t be that as disc problems don’t affect swallowing - he said the swallowing mechanism is complicated and is controlled directly by the brain.

He then mentioned a nasty car accident I had a few weeks ago and said that stressful events can trigger things!

He’s made me an appointment for 4th December but this is such a horrible feeling/sensation to put up with until then!

Any advice on what I can do in the meantime much appreciated??

xxxjenxxx

hi

ask for a referrral to speech therapist. i couldnt swallow-not even fluids. she came to my home and done assessment. she was full of good advice. she explained that so many things have to fall in to place to swallow-its a complicated procedure until something goes wrong/doesnt work.

hope u get some advice soon-i know how scary and frustrating it can be, ellie

Hi Ellie! Thank you so much for responding!!

I’ve got a GP appointment on the 4th so will ask about a speech theapist then x

I guess I’m finding it hard to know what symptoms are to do with the probable MS thing - and are to be expected - and which ones to seek help for - but most importantly I don’t know who to turn to! Because I don’t have a definite diagnosis I don’t have a nurse etc and although the neuro said to ring his secretary and he’ll see me any time - I just don’t like to

I guess the choking is so scary - I’m starting to not want to go to sleep - or eat anything just in case it sticks - extremely unusual for me!! I’m such a hog!! xxxjenxxx

hiya

again i can understand all that u say-have lost over 4 1/2 stone because of swallowing/appetite issues-its just accessing the proper help and i sincerely wish u all the best with that, ellie

ps i asked for help from dietician cos of losing so much weight. she sent leaflets on constipation (which i told her i wasnt and weight loss duh!) the speech therapist ‘got it’ and offered brill suggestions/advice.

i would ask to see a speech therapist,like Ellie suggested

i have had swallowing problems for 21 years now,my 1st massive relapse left me unable to swallow easily.even after all this time,i still have to really THINK about my swallowing,i have to eat when i am relaxed and cant talk while eating,or eat out,if i do eat out,very rarely,these days, i have to have easy to chew foods,and also it takes me forever, to eat even a snack.the speech therapist will teach you ways of coping.

J x

I am also having problems swallowing, but different ones to you. Yours sound scary! With me it is as if my brain just switches off and I forget how to swallow while I am eating/drinking. I have to move my head around a bit which seems to wake my brain up and then I can swallow again. This is normally fine but a few times hot soup or tea has gone down my throat and burnt it while I have forgotten how to swallow leaving my throat very sore. I have been referred to a speech therapist but I have not heard yet. I hope you get sorted soon.

Hello Jen

I’ve had this problem with swallowing particularly with tablets but not all the time…it is scary.

Its something thats been happening to me long before I was diagnosed.

I always have capsule/torpedo shaped tablets now…never round. Or I have dissolvable when possible.

I’ve been known to spit things out of my mouth sometimes when I feel I’m not going to be able to swallow.

You could try buying yourself a V pillow and sleeping propped up which may help with regards to mucous.

The choking feeling happens a lot with certain foods I eat…always have water with my meals.

I try to stay calm and not panic when its happening…I know thats hard!! but I think getting stressed just adds to the panic.

All the best to you, hope you get some help. Noreen

Hi,

I spent 6 days on a drip a few months ago. I had the salt team and they were just FAB. I could not swallow due to relapse and falling down stair,s backwards. They came to se me at home and i was told if i need them again just to give them a ring. Some times i have to take stage 2 foods. I also have Nutilis Powder always in the house.

Good luck,

Jane x

Yes I too have recently experienced swallowing difficulties what seemed to help me was diazapam and anti sickness tablets prescribed by my gp, although didn’t realise at the time I was also having a relaspe… Had a 3 day iv steroids and it has really improved.

I wake up most nights thinking i’m choking on something and end up coughing and spluttering saliva all over the floor until iwake up fully and realise what is happening.

I just get up and get a glass of water and that does the trick for me every time.

I wake up most nights thinking i’m choking on something and end up coughing and spluttering saliva all over the floor until i wake up fully and realise what is happening.

I just get up and get a glass of water and that does the trick for me every time.

I also suffer from deja vu

Thank you so much all x

Last night was a better night! I took an extra baclofen and I think it helped.

I think sometimes you can feel so alone with these things that are happening to you - nobody really understands what it’s like unless you’ve been there like you all have x

Also I think wthat’s bothering me is the dismissiveness of my doctor - perhaps dismissive is a harsh word but it’s ‘oh dear, poor you, don’t worry, it’s nothing else, not your discs etc - it’s a brain thing - just another neuro symptom you have to learn to live with’.

I’m getting that sinking feeling too - because after a barrage of tests by all sorts of other consultants it’s obvious they are no longer looking for something else other than MS - that’s it, that’s your lot, it’s your brain - accept it & deal with it!

If anyone else had gone to them with swallowing problems it would have been an appointment with an endoscopy tube pretty sharpish to rule out anything sinister!

Anyway - thank you again - I’m trying very hard not to focus on it now as it certainly seems to make it feel worse - and now I’ve shared it with you it doesn’t seem like such a mountain anymore - more like a molehill and you are poop scared of the mole!!! xxxxjenxxxx

Hi - sorry haven’t read all the posts as brain fuzz. Definitely SALT also ask GP for liquid or dissolvable medication. Hugs Min xx

Hi is there anyone out there that can give me some advice please. Will have to give you a bit of background first. I am 64 diagnosed 24 years ago and luckily mobile but with MS usual symptoms which are manageable. I hadn’t seen a neurologist for years and years but new doctor thought it would be advisable as I have had trouble, choking, not daily but now and again. Endoscopy was clear. Saw neurologist last week, asked a few questions and dismissed it as not MS related as it was only food causing it and said it was globus, go to ENT. I was very distressed at this having not seen a neurologist or years, didn’t ask what other problems I had and didn’t even give me the name of the MS nurse should I need advice, all the advice I have had in recent years has been of the Internet. What should I do, losing a lot of sleep over this.

Hello. My suggestion would be to contact your gp and describe the symptoms and the stress it is causing. Ask for direction/referral to local support. You should definitely see an SLT- they specialize in swallowng difficulties and will be able to make recommendations following assessment. Typically this should, involve small changes to diet and texture, possibly some techniques, consideration of reflux, videoflouroscppy (to see what is actually happening to food when you eat). In Scotland we often have an open referral system so you could even try calling your local slt department if you Google it. Your gp is your primary care contact and should be able to sign post you and provide contact for support and onward referrals