Terrible aches/headaches

[Doggymama]

Is there something that can be prescribed for the terrible aching, it's his limbs and neck? My husband is suffering awfully with it and the headaches are also really terrible. I have rang the MND clinic and our specialist nurse is ringing us tomorrow but its what I can do to help him in the meantime? Thank you as always x

[Ellie]

Doggymama Your poor husband...

They really need to know the cause of the pain to know what to prescribe - is it neve pain, muscle spasm, musculoskeletal?

I presume an ibuprofen and paracetamol combination isn't tackling it? xx

[Doggymama]

Hi Ellie, nothing off the shelf is helping unfortunately. The consultant prescribed quinine for the spasms but the aching hasn’t stopped. Seems to mainly be where there is a lot of muscle wastage. The headaches are every morning. He has been referred for respiratory assessment but we haven’t heard from them yet xx

[Ellie]

The consultant prescribed quinine for the spasms but the aching hasn’t stopped.

If his muscle tone is high, that causes the muscles to be in near constant spasm, and an antispasmodic med such as Baclofen, is prescribed (I take Baclofen)
Maybe heat would help? Hot water bottles, wheat packs and, my favourite, an electric blanket to keep my muscles warm in bed.

The headaches are every morning.

That is almost certainly caused by CO2 retention, if he has breathing issues, so you might need to be the annoying squeaky wheel and ring (keep ringing) the clinic and ask for an overnight pulse oximetry test - it's a fingertip monitor which he wears in his own bed, and monitors his oxygen levels. It does not measure CO2 levels, but they can be done at home, taking blood for his earlobe.

Another possible cause of morning headaches is teeth grinding.

Squeaky wheels get oiled first... xx

[Doggymama]

Thanks Ellie, the consultant did say that someone would come to the house to set up something for overnight testing. Just waiting now. He already had breathing problems due to heart failure. He has been breathless since his heart attacks. Xx

[Doggymama]

Absolutely amazing service from the RVI care clinic, spoke to my husbands specialist nurse this morning regarding his headaches and we now have an appointment for tomorrow afternoon for a breathing assessment.

[Ellie]

Doggymama Glad it's (finally) happening!

Do you think your husband is prepared to be offered NIV (Non Invasive Ventilation) tomorrow if his breathing tests show that he'd benefit from using such a machine?

It's not something any of us want to hear but, if he knows it's a possibility, it might lessen the shock factor, for you too. xx

[Doggymama]

I have talked to him about it and I think he will be happy for anything to help these headaches go away. The person from the team I just spoke to said they are prepared that he may need to go on NIV straightaway but will do the testing first. She said all tests will be done tomorrow and they will be ready if NIV is needed.

[Rosemary6NT]

I have talked to him about it and I think he will be happy for anything to help these headaches go away. The person from the team I just spoke to said they are prepared that he may need to go on NIV straightaway but will do the testing first. She said all tests will be done tomorrow and they will be ready if NIV is needed.

NIV has been a Godsend to me, enabling me to sleep at night.

[Ellie]

Doggymama Do you want more info on NIV?

[Doggymama]

Oh yes please Ellie, I have no idea about it except it may help his headaches xx

[Ellie]

This is a website specific to NIV use in MND.

To explain the headaches: as the respiratory muscles weaken, the breathing process doesn't work as it ought to - we can't breathe in enough air nor breathe out enough carbon dioxide because our diaphragm and intercostal muscles aren't strong enough and they tire.

Too little oxygen in the blood can make us fatigued and even apathetic. Too much carbon dioxide in the blood can cause headaches, confusion and sleepiness.

NIV takes the hard work off our respiratory muscles by improving the breathing process through gently blowing air into our lungs, increasing oxygen levels, and making it easier to breathe out, decreasing carbon dioxide levels.

[shelly21]

Doggymama really pleased you have got a quick appointment. Ellie has given you sound advice.

Even though we dread using niv it is said to not only improve quality of life but prolong it.


Anxiety doesn't help with our breathing but with so much to deal with it becomes continually an anxious time. X

[Doggymama]

Thanks Ellie and Shelly. It’s rather frightening. Xx

[Doggymama]

He had the respiratory tests yesterday, he has some signs of carbon dioxide retention but his levels were okay in clinic so they are arranging to come to the house with an overnight testing machine to check. He says he can’t go on with these headaches and wishes for things to end for him. It’s heartbreaking xx