Night Terrors

[lmpieroni]

Good morning everyone, I last posted about my night terrors , so I visited my doctor who changed the 30mg lansoprazole I was taking to 20 Esomeprazole but unfortunately still getting the disturbing night terrors feel so upset this morning the nightmare was so bad last night I was too scared to go back to sleep , crazy I know, feel a bit daft now so don't know what to do, back to the doctors I suppose 😥

[OldTed60]

Hi there. Do you feel that this is a physiological problem relating to your gut and brain? If so perhaps you could do with a neuro-gastro testing you for GI dysmotility if you haven’t already? To me this sounds very vagus nerve related. So stress, foods etc could be disrupting your autonomic nervous system overnight. Sadly the GI involvement of scleroderma isn’t as well understood or as treatable as other internal organ involvement or external issues. But as you mention changing to esomeprazole I’m guessing you or your dr think this is a GI issue?

I have severe GI involvement from mouth to tail including reflux, hiatus hernia, gastroparesis, SIBO and slow colon transit. I wake a lot in night with gut disturbances which I think are related to autonomic issues. My intestines often feel as if they are trembling with a lot of watery noises eg gurgling - which sometimes feels like an alien and happens in the daytimes too. It’s actually been better for a week or two and I’ve managed to gain a kilo due to having more appetite and getting more calories. In turn this has stopped all the noises and the internal tremor. I don’t know why the improvement - maybe just eating more savoury foods so higher salt intake - as my sodium is usually too low due to fluid loss from heavy duty laxatives etc.

But the knock on effect on my nights is really positive and long may it last! I am sure this is linked to my spells of internal shaking because low sodium causes neuro symptoms and I’ve been craving salt more so nibbling marmite - ugh as that probably sounds - on rice cakes or with baked salted crisps.

Maybe worth asking your GP to look at your full blood count and check iron and micronutrient panel or refer you to a neurologist who can do this - as mine did last year?

[lmpieroni in reply to OldTed60]

Hi Ted, thank you so much for your reply , I have never had neuro-gastro test but it's definitely something to talk to the doctor about , maybe if I could look at my diet and find out if there are any triggers linked to certain foods that might help, anyway thank you for your help hope you are OK sounds like you have a lot to deal with take care 😍

[Clangerscat]

Hi Impieroni, how horrible for you. Don’t feel daft though, if your nightmares are that bad you must go back to your doctor. This disease can be debilitating enough without loosing sleep. OldTed had an interesting take on it. Do these terrors happen if you sleep during the day? Might help you to catch up on some sleep if they don’t. Take care.

[lmpieroni in reply to Clangerscat]

Hi thanks so much for your kind reply, so far they haven't happened during the day but then again its very rare that I sleep during the day 🥰 didnt have a night terror last night so thats good , thanks again take care 🥰

[Pixix]

my nights are like that every night. I had lizards ‘exploding’ through my skin one night…in another I killed my ex Managing Director…as I woke I thought I was feeling his shroud…& I was feeling the duvet cover. I hate going to sleep, & have perpetual fatigue. But I only have Raynauds, not Scleroderma. I do have 12 diseases, though, & a lot of pills to take. My Dr says it’s not possible to know which one is causing it. I never sleep during the day. I wouldn’t sleep at night if I could avoid it. I’m very sympathetic, I don’t think people understand how appallingly real it is…& if you wake & go back to sleep it just takes off where I left it! I can remember nearly all the next morning! Sorry I have no solution, but you’re not on your own!

[lmpieroni in reply to Pixix]

Hi pixie I'm so sorry this happens to you as well it really is awful it sounds horrendous what your going through, I'm the same always tired the doctors added chronic fatigue to my list of ailments , it probably is the medication but unfortunately you need the pills, I hope you have a good day today, enjoy the good days when you can

[Pixix in reply to lmpieroni]

You, too…enjoy the sunshine, the small things in life, do stuff that makes you smile when you can!! Thanks, S x

[lynntregaron]

Sorry to hear of your horrific nightmares. I have been taking 30mg Lansoprazole for several years now and before that Omeprazole for several years, both with no adverse effects. I guess we all react differently to medication. I hope you get the problem sorted very soon.

[lmpieroni in reply to lynntregaron]

Hi thanks for reply its interesting to hear how others have reacted to these tablets your reply really helps thank you

[NZHeather]

An interesting article news-medical.net/news/20240...

[lmpieroni in reply to NZHeather]

Hi thank you for sending me this link its really interesting and makes me feel that these nightmares are definitely linked to sclerederma its definitely something I will be discussing with my consultant thanks again 🥰

[NZHeather in reply to lmpieroni]

Hello again. another thought, my husband, Graham, who is very healthy, albiet a bit overweight, in the last few years would have quite dramatic dreams, not really the night terrors. At the same time I kept saying you have sleep apnea as I was very aware he kept stop breathing during the night, he kept replying that he did not snore, which he didn't! He also was very tired and kept nodding off in the afternoon. Finally he agreeed to a going private here in New Zealand to have a test, just a simple wristwatch thing with a cord attached to a plastic clamp going on his finger. It did indeed show he had sleep apnea. We discussed with the sleep specialist with the company who asked if he remembered his dreams, which he did and she said that was indeed one symptom of sleep apnea. We paid for a system of mask and air box. Graham battled with the nose mask, when they sent a face mask it worked so well and he no longer remembers his dreams. I will leave this with you Best wishes Heather

[lmpieroni in reply to NZHeather]

Thanks for your reply I hadn't thought of sleep apnea, maybe thats what it is, its something to consider thanks again for your help