Hello

[Ellie]

I’m wondering if stress and anxiety may be to blame. He has had a bit better day today. Headache wore off quite quickly this morning

At least he had a better day today.

Stress could be a contributing factor for sure - sending his BP sky high; causing tension heaches; altering how he breathes etc.

Sleeping with his head/upper body may help his overnight breathing.

Keep an eye on him. xx

[Doggymama]

Thanks Ellie, I’m wondering if stress and anxiety may be to blame. He has had a bit better day today. Headache wore off quite quickly this morning xx

[Ellie]

Doggymama Have you a fingertip monitor to measure his oxygen levels (pulse oximeter)?

The 'cure' for headaches caused by CO2 retention is to use non-invasive ventilation (NIV) I wouldn't be too quick to blame MND for all of this...

Hopefully he will get input from his GP or other HCP.

Best wishes xx

[Mary C]

Good morning,Doggtmama
Really hope your husband gets an assessment today and some advise.I guess as yet he isn’t linked to a respiratory team at a hospital as a recent diagnosis.
Maybe start with the GP.As Ellie said carbon dioxide build up the blood can lead to waking with headaches.I don’t know what the treatment would be.
I just know every time I go to the respiratory assessment they measure carbon dioxide and ask about headaches.
Best wishes
Maryx

[LindaB]

Doggymama morning sounds worrying for you both. I wonder if youre yet linked in to your local hospice...they are very good at home visits and support. Maybe e-mail the MND specialist and tell them of your concerns.
Best wishes xx

[Doggymama]

Thanks Ellie, yesterday he got no relief from the headache, he was always quite breathless before as he has some heart damage from two previous heart attacks. He has been having daily morning headaches until yesterday where it was constant. Will see how he is when he wakes and try for an appointment xx

[Ellie]

His headaches seem worse and he is complaining of noises in his ear. Are these usual symptoms?

Headaches in ALS/MND is usually caused by CO2 build up in the blood, caused by poor respiratory function due to weakened muscles. These headaches are usually worse in the morning but would be expected to go, or to lessen, once the person is upright/sitting up for a while (it's easier to breathe when not lying down)

Does your husband have constant headaches? Is he breathless?

The tinnutis may, or may not, be related to MND, or the headaches are not related to MND, and in fact the headaches and tinnitus are inter-related.

A blood test would quickly rule in or out CO2 retention - is there any hope he could get such a test, notwithstanding that tomorrow is Christmas Eve... xx

[Doggymama]

The appointment with the MND specialist has come through for 10th January. His headaches seem worse and he is complaining of noises in his ear. Are these usual symptoms? Thank you for any advice, we are so new to this x

[EvelynMW]

Am i the only one still not really believing i've got MND? Must be my meds, lol

[Doggymama]

Thank you for your replies and support. It’s so hard, my husband is desperately upset. It’s very early days and hopefully as time goes on, acceptance will come. I just want to make everything okay for him and I can’t. Xx

[shelly21]

So sorry Doggymama on both your news . Hopefully you have been allocated an mnd nurse? There is alot about to happen that will feel such a whirlind for you both.

for me they started me on riluzole and did lung function tests straight away. They like to see where we stand re blood tests re liver before starting riluzole. Then lung function is done every so often to see if breathing is affected.

We could bombard you with the list but maybe just take this time to let the awful news sink in a little. Xx

[Ellie]

I think my husband would gladly accept counselling.

Counselling was a game changer for me in coming to terms with my diagnosis and I would not have seen myself as the counselling 'type' 🙄

Hope it can be organised for him. 😘

[matthew55]

Welcome Doggymama you are certainly in the right place for friendship, help, advice and support. Very glad to see you but sorry you're here. 👍😁😘🤗xx

[Gordan1111]

I think neuro will put all stuff in place. I've had appts with physio,OT, SALT and MND clinic xx

[keno]

Welcome, you at the right place
I was diagnosed in June