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LoveMyBoy

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Hi,

This is my first post - have been lurking for some time reading all the great advice. Thank you all for holding this party and allowing others of us to join.

My husband's ALS is fairly well progressed - he started with left arm weakness and slurred speech, and at this point has lost the use of left arm and left leg with right leg and arm following fast, all hoist transfers, gets most of his food and all medicine through a PEG, all drinks thickened etc.

He is currently in a hospice for a short stay to allow me some respite and to get his pain under control, but while there has had a few attacks of hiccups which have lasted for a day or more each time. The only solution they have found are increasingly strong sedatives, which of course make him very drowsy - i presume they work by relaxing the diaghragm muscles involved in hiccuping or something like that.

Has anyone else's PAL had issues with hiccups like this and did anything else help?

Thanks,
Deb
 

dalvin

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Deb,
Just did a quick search on the web, one of the causes of hiccups is too much air in the stomach. If this is what's causing your husbands problem, I'd look to see if they're bleeding the tube of a air before connecting it to his peg. Also if the formula is consumed too fast or too much at a time. One other thing mentioned is that some medicines, including anesthesias can cause them so it's possible that the meds they are giving him may be making the problem worse.
Don't know if any of this applies but it's worth looking in to
 

affected

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Hi Deb and welcome!

My husband has had hiccups from fairly early, but not to a point where it was a concern or he needed sedatives!

Often his hiccups have seemed to me like diaphragm fasciculations and other times like true hiccups.

You didn't mention what his breathing has been like to this point?

I hope you are managing to get some rest and a break!
 

LoveMyBoy

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Reason
CALS
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06/2011
Country
AUS
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Did not think of fasciculation connection - gosh I hope not because then he'll have them for a while...

The medication side-effects option does seem possible though, they've been trying a lot of new things while he's in the hospice.

His last breathing assessment was about six months ago, and at that stage they said it was low side of normal, weren't ready to try BIPAP yet. Next round of tests tomorrow and assessment thursday with the respiratory specialist so may know more then.

Thanks for the input!

Deb
 

zoohouse

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Deb, is it the respiratory team that wasn't ready to try BiPap or you husband? If he is showing any signs of sleep apnea, I suggest he try and get over the aversion and start using the BiPap. There is a bit of adjustment time needed, especially in finding a mask or nasal pillow that is comfortable and works. My husband is now totally dependant on his BiPap at night, and uses a sip & puff ventilator during the day and I had to do a lot of convincing to get him to stick with finding a mask that would work, or he wouldn't be here with me now. I think it would have been more difficult for him if he had waited until he absolutely needed it, as he would have been more frantic. If he wants to nap during the day we put the face mask or nasal pillows on him so he doesn't have to worry about holding onto his mouth piece.

Paulette
 

LoveMyBoy

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CALS
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Hi Paulette,

No, it's the respiratory team who weren't ready to give him BiPap yet - my husband is willing to try it.

We didn't make it to the respiratory tests - we discovered his wheelchair is no longer well-suited to him as he started sliding out of it despite two seatbelts in the wheelchair taxi yesterday. Hospice nurses had put him in very slippery sleep shorts rather than day shorts, so we should be OK to get him home in it on Sunday in normal clothes, but now the hunt starts for a tilt in space wheelchair that we can borrow. Respiratory tests couldn't be rescheduled sooner than August so even longer to wait for BiPap - fortunately his breathing does seem OK and no sleep apnoea signs but I wonder if it would help with his fatigue.

Requests for additional personal care and home help when he returns home on Sunday have been rejected so now the mad rush to see what else i can put in place...

Thanks all,

Deb
 

zoohouse

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Deb, has you husband been to a sleep clinic. The respiratory team can only tell you is he is not taking deep breaths. My husband went to a sleep clinic within 2 weeks of being diagnosed and he has both obstructive, and central apnea. Obstructive apnea is self explanatory, but central apnea is caused by something in the brain not triggering him to breath. I had noticed it long before he ever showed symptoms of ALS, where he would only take 3-4 breaths a minute when he was in a deep sleep. He has a ViPap where I can set it to initiate a minimum of 12 breaths a minute, it is amazing what a difference it has made.

Paulette
 

LoveMyBoy

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Sorry about the delayed response - first week home from hospice lots of adjustments to make! Counted 14 people through the house on Tuesday, mostly discussion and no action...

Thanks Paulette yes he has done a sleep clinic as well. They've settled on the fasciculation/cramps type explanation and upped his Baclofen to reduce cramping - seems to have done the trick, only one 20 minute fit of hiccups this week.

Deb
 

affected

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that's so interesting about the hiccups and the response to baclofen.

My PALS tried baclofen, but he has ftd. It can take a little bit for the body to adjust to baclofen and get the dose right. He took it for about 3 weeks, said I don't like the side effects and stopped. That was oh around 10 months back.

He hiccups every day and has for a long time.
 

LoveMyBoy

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Messages
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CALS
Diagnosis
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Country
AUS
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Hi Tillie,

Yes my husband tried low doses of Baclofen earlier, said it didn't do anything and gave up on it. It was only during his respite hospice stay that they had the time to gradually up the dose - also since he's no longer weight bearing less of a concern about weakening muscles more than intended and leading to more falls etc. Sedatives also helped in the short term to stop the hiccups while the Baclofen kicked in - made him sleepy of course. So not a quick fix but still only two very short rounds of hiccups in two weeks on the Baclofen so might be worth another try if your husband is willing?

deb
 

LoveMyBoy

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Joined
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Messages
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Reason
CALS
Diagnosis
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AUS
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Tillie I just read more posts and saw what's going on for you - ignore my well-meant suggestions that mean you having to do anything else at all! Hugs and hang in there, be kind to yourself,

Deb
 

affected

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thank you so much LoveMyBoy.

My husband resists drugs most of the time, he has pain in his back and neck during standing transfers, but refuses to take tiny doses of oxynorm because he worries it will make him sleepy.

I'm so glad the Baclofen is helping the hiccups. I always suspected it was neurological hiccups he gets.
 
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