When will I recover from sleep deprivation?

[An0therNameToday]

Hi,

I wondered if some more experienced mothers could help me with some advice? I lost years of sleep with ds1 and am wondering when I will be physically recovered?

Ds1 had obstructive apnoea as a baby and toddler. His adenoids became so large that his nose physically grew shut, and then he could only sleep if I sat up all night and held his mouth open. He was also miserable and uncomfortable all day so that I had to work constantly to avoid having him spiral into meltdowns. At one time he could only nap in the daytime if I walked constantly with the pushchair, never stopping. It was -6 degrees that winter for three months, so it was a really hard time. He was wrapped up very warmly of course.

We were both so tired that we lurched constantly from one virus to the next and became very isolated. I also developed a large number of food intolerances.

The sleep problem was solved for ds by two ENT operations, a very radical change of diet and by getting rid of our lawn.

At the age of four, he slept through and weaned from bf. For a few weeks I just sat up all night feeling astonished at the silence, and unable to sleep. I think I had been living on adrenaline and bf hormones for ages and then when the hormones withdrew I suddenly got really ill. It happened so suddenly that I was in the garden centre when it came on.

I suddenly got hit by constant anxiety that was like the panic that sets in after a car accident. It was accompanied by severe nausea, light hurting my eyes and sounds hurting my ears. My taste buds went all weird so that a piece of raw carrot would taste very strong as though it was carrot essential oil. I couldn't even eat plain boiled rice because the taste was too strong. In the end I found I could only eat six things. My head also constantly spun a bit and my heart beat went very faint. It became very very faint if I tried some mild exertion like trying to walk slowly up the stairs. If I took a vitamin supplement the anxiety and nausea got much worse. I lost two stone and was unable to put it back on.

Anyway, it is now two years later, and the symptoms have gradually reduced and are a lot better. I can get out and about often, and enjoy seeing friends at the school gate. I still have the same symptoms but just very much reduced, but they still hold me back a lot. However, I have to pace myself very carefully and rest a lot or I get viruses very easily. I can't travel to see family because my head still spins and I struggle with nausea which is very difficult for travel. My weight has gone back up by one stone.

I wondered if anyone else had experienced anything like this? Do you think it is a combination of Post-natal anxiety and carer burnout? I asked several GPs and they just call it "stress". I have also wondered if it might be CFS.

I sort of feel that having taken 4 years to get into this state, it's likely that I will take four years to recover. I just wondered if anyone might know? Also if people might know which medical specialist might be able to help me with this?

Thanks!

[An0therNameToday]

Bump

[PurpleWithRed]

You need to get a proper assessment - start with your gp. Focus on what your symptoms are now, keep a diary (foods, moods, energy levels). Make getting well again a campaign. Sounds much more like a combination of anxiety/post viral fatigue/thyroid/nutritional deficiency than anything to do with your DS but what do I know? Get professional help.

[Kohi36]

Adrenal burn out. My son was born very premature almost 4 years ago. He had a number of issues which resulted in him sleeping very badly. I survived on between 2-5 hours of sleep for 3 years. I breastfed him for 3 years. I also feel like I survived ok adrenaline and had a really tough time hormonally when he weaned. Even after a year of sleep I am nowhere near the person I used to be. I have an underactive thyroid and high cortisol. I would definitely get a full thyroid panel done and get the adrenal saliva test done. I did mine through Genova diagnostics. It can take a long toms for adrenals to heal unfortunately but best to find out now what state your body is in and start treatment as soon as possible. I wish you luck.

[roseteapot101]

Its hard with doctors i never knew the words to explain my situation.It can be hard especially when you dont know who to ask.Ask your GP you would like to talk to someone with more experience in mental health.There should be a mental health team in your area.

.It sounds like you need time to your self.Its important to take time to your self.Every few months my man and i leave our daughter with grandparents and go on a mini weekend away together.I find sometimes i need just peace and quiet to myself.

I went through many years of stress and unfortunate events in my life. Because of this i have a low stress tolerance and its taken me years to understand myself to the point that i can cope with it.Meditation helps but i have suffered from panic attacks.

so look up your local mental health team there must be someone you can talk to

[ElphabaTheGreen]

Your symptoms do sound largely anxiety-related and I would also suggest some PTSD. I had terrible, terrible sleep deprivation with both of my DSs (now 4yo and 2yo). They're great now, but DH convinced me to spend our first ever night away from home with both of them recently, and DS2 reverted right back to screaming to sleep then waking every 40 minutes through the night. The next day I was shaking, crying, hyperventilating, headaches, shouting at DH (which I never do) because it just dragged me back to the hell-days of having to hammer myself through a day on no sleep and I've categorically told DH that I'm not going away with the DCs until they are older, because I do NOT have to put up with that shit any more. It scars you, it really does.

HOWEVER, I have also recently been diagnosed with Addison's Disease which is a disorder of the adrenal glands. These produce cortisol, which sky-rockets in situations of stress and especially sleep deprivation. My adrenal glands have basically now stopped functioning, so I no longer produce cortisol and am steroid-dependant for the rest of my life. Now, I know that Addison's Disease is an auto-immune disease, but I can't help but wonder if my years of sleep deprivation helped it along - 'adrenal fatigue' is a thing. I don't know how genuine a thing it is, but Google it and see if a referral to an endocrinologist might be what you need?

[ElphabaTheGreen]

X-post with Kohi! Snap!

[An0therNameToday]

Thank you so much for this information. It's exactly that sort of thing that I had been wondering about.

I definitely have a bit of PTSD from ds's first surgery and I suppose the thing for that is to visit a clinical psychologist is it?

Also I was pretty certain that adrenal fatigue (the low grade version of Addison's as I understand it) was a big part of the problem.

Is this the test that you recommend?
www.gdx.net/product/adrenocortex-stress-hormone-test-saliva
I could get that done myself without having to convince a GP which would be great. I had my thyroid checked right back at the beginning, two years ago and they said it was fine.

I know I have had trouble with burnout before, as I had burnout symptoms after every single set of school and University exams. It typically took me the same time to recover as it took me to drive myself into the ground in the first place, so I am assuming four years this time. It's a long wait through.

Do you have any idea if I can arrange testing for nutritional deficiency myself without having to ask my GP to pay for it?

Thanks a million for thinking about this. It's such a weight off my mind to talk about it rather than just waiting patiently and keeping it all secret. My GP only gets a few minutes each time I visit, so even she has very little idea of what is going on with me.

I have wondered about visiting a private GP just to get a longer appointment, but they seem to be very expensive indeed.

Thanks so much for listening!

[An0therNameToday]

Ooo! I just realised that that lab is in the US. I presume the Doctor's Laboratory would be the equivalent here.

www.tdlpathology.com/home.aspx

[ElphabaTheGreen]

Saliva is not an accurate way of testing cortisol. It really needs to be a first- thing morning blood test, so it would need to go through your GP. I guess it depends how amenable your GP is to carrying out tests you think you need via the Internet! Discuss what your GP thinks about adrenal fatigue and whether she thinks it's worth pursuing - I believe it's a bit of a controversial topic. Acknowledge that many of your symptoms are certainly psychological but that some of them (particularly the weight loss) can be indicative if something physiological. If you also accept any and all psychological input she suggests, I suspect she'll be more amenable to pairing those with further physical investigations as well. It makes it clear you're not just after a 'quick fix'.

[Oblomov16]

Depends if you think you are an anxious person to start with? You need to address that core issue, possibly with counselling, or similar.

Or reacting to a situation, long term sleep deprivation from ds - led to PTSD or another medical condition - so it could be medical or physical or a combination of both.

These days everyone wants to put it down to , it seems all the rage that every GP puts anything down to stress/anxiety/mental Health.

But I'm starting to wonder if yours is actually more physical and you have a medical condition that is harder to diagnose?

Or maybe I'm projecting onto you. I have never considered myself anxious. Neither does my dh, my mum or my best friend. I had sleep deprivation, for a shorter timespan than you. I kept being told I was depressed, but I never met any of the other criteria ( say for e.g. On the Edinburgh test) so I now kind of dispute that.

Only you know which it is.
5 different GP's may have 5 different views on it - it is subjective.

But either way, this is no way to live, so I would go back to your GP, even if they think it's all mental, like an eating disorder bought on by stress, you need help to manage the number of items you can eat, because that's very restrictive and that's not good.

[MoonlightMedicine]

Gosh this is worrying. I've been hideously sleep deprived by my 2 children, 6.5 years in now and I'm still woken every few hours. I had no idea it might cause some irreversible physical problems.

[An0therNameToday]

Oblomov16 Yes I've been assuming that it was entirely stress and needed addressed with lots and lots and lots of rest, and just letting the stress and trauma of the previous years gradually sink away.

I saw a clinical psychologist back at the beginning and I am seeing her again now. That has been very helpful.

My instinct is to just let my body and mind rest and not be pushed into a quick medical fix. I'm try to use meditation and relaxation to move things on a bit faster.

I would like to move things on a bit though, as I worry that I'm not getting enough nutrition, and the my son is missing out on fun and on happy memories as I'm too tired to take him on daytrips, and I'm often ill with viruses.

A big priority for me is getting my appetite back if anybody knows how to speed that up, I'd be most grateful. Is the appetite loss to do with PTSD or depression, or is it to do with the adrenaline mess up?

MoonlightMedicine I have always reacted badly to overwork and sleep deprivation. If you are normally okay with it then you should be okay this time too. If not, then it might be a good idea find ways to make more time for yourself (she says; knowing fine well that this is a pipe dream.)

[An0therNameToday]

Oblomov16 I think the main problem is that I have the sort of digestive system that responds poorly to all forms of stress. Over the years that has turned into a phobia of nausea, which kind of spiralled upwards in the last few very difficult years and made the stress much much worse. I also had complex eye trouble before ds was born, which contributed a lot to that as it left me with motion sickness.

So in summary - yes I am an anxious person and I am trying to address that and get myself back to being habitually calm.

I think I also have an underlying digestive issue, but I don't think it's one that can be cured, just managed. I have read all of John Hunter's books and had a CT scan to check for actual issues. I couldn't have an MRI scan because I was unable to drink the bowel prep stuff, so I don't know if there is inflammation. My calprotectin levels are usually 150-250, with one outlier at 500.

My plan is to iron out all my anxiety issues and try to get myself into a really calm place, and hope that my body sort of springs back into shape.

Does this sound right?

[ElphabaTheGreen]

Loss of appetite is a symptom of cortisol insufficiency (but then, it's also a symptom of depression and other MH issues, so definitely see your GP for very thorough investigations).

[An0therNameToday]

Thanks ElphabaTheGreen. So it would be worth doing the cortisol test then. I'll ask about that.

[Kohi36]

I was told that the only way to test adrenal was saliva and that the blood test wasn't accurate. I also have PTSD due to my sons traumatic birth and 3 month stay in the NICU. That coupled with the severe sleep deprivation and undiagnosed thyroid dysfunction meant I was just barely coping the past 4 years. It's taking me s year to get to bottom of what was going on with me. I'm on the road to recovery now but don't think I will ever get back to the health I was in prior to my sons birth. You really need a good doctor on your side who is knowledgeable in these areas. Some doctors don't believe adrenal fatigue exists! Lots of doctors don't treat thyroid patients optimally. I had to educate myself and then travel to a doctor who knew what they were at. It's terrible that u have to do this considering we are now exhausted to begin with. I made a lot of changes to my diet which has helped immensely. I also had acupuncture. I use some supplements daily which have helped a lot Vit d and magnesium oil in particular. I no longer have insomnia. I am healing slowly, I've accepted this could take a few years to get well. It's very tough. I hope u can get some support.

[An0therNameToday]

Kohi36 Thank you so much for telling me about that. It helps such a lot to know that I am not the only one. I'm so sorry that you have had to go through this too.

It's the trauma and the sleep deprivation together that do the damage isn't it? There was never time in the early year to process the emotions and I think they build up and cause a lot of physical trouble.

I'm really interested in the magnesium oil idea. Magnesium is one of my big problems just now as I can't find a supplement that I can tolerate, and without that I can't take vitamin D without causing insomnia. Which supplements do you use, and how did you find your wonderful Doctor?

Thanks a million.

[ElphabaTheGreen]

I'm not sure who told you that Kohi but it's very wrong. I've had every adrenal test known to medicine in the past couple of months, under the direction of both an endocrinologist and a neurologist, and blood is the only accurate way of testing for cortisol levels and adrenal cortex antibodies. I haven't had a single test of my saliva. I think you can detect changes in cortisol levels through saliva (and tears as well) but it doesn't indicate what your baseline level of cortisol is.

Yes - adrenal fatigue is a controversial subject as I've suggested above. That's why I would cautiously find out what your GP's position is on it as it can be a sign of someone who rates a Google search over a medical opinion.

[An0therNameToday]

I already checked and my GP thinks adrenal fatigue doesn't exist and that I should pursue the anxiety side with a clinical psychologist. tbh, I'm quite happy to follow her advice on that. I think I have a tendency to work myself into the ground and if I could not do that in the first place I'd save myself a lot of trouble.

[An0therNameToday]

Or else that's totally wrong and my body is just not good at all at working hard. :-) I really have no idea.

[An0therNameToday]

I've been thinking - of this is all to do with stress and needs to be managed by meditation and changes in thinking habits - then maybe I could find a way to measure my stress levels and graph them over the months so I can see measurable improvements if I work at it diligently. That way, when I get distracted and don't apply myself, I'd be sure to notice.

First I was thinking that I could take my pulse rate after resting each day (as if I ever rest), and then I noticed that there actual devices that do that for us if we want them. emvio.watch/#howitworks

I wonder if these would be any help for pacing and learning to consistently take time to rest? And would that help?

[CurtainsforRonnie]

Ive read your other thread OP & this one. I had Glandular Fever last year & am still suffering the after affects.
Have they tested you for it?

[ThisOnesNew]

Thanks, yes they tested me for infection and found nothing. Thanks for reading all this.

[EreniTheFrog]

After almost 2 years of intense sleep deprivation with DD and the added bonus of newborn DS, I ended up in hospital for a week with suspected Addisons. Like you, I had a lot of anxiety and very strange taste buds too. In the end, my cortisol levels weren't low enough to really diagnose anything, and I got the usual warnings about adrenal fatigue not being a medically recognised entity BUT I found some of the advice on adrenal fatigue websites helpful nevertheless, alongside all the usual advice and support given on managing anxiety. So my advice to you - irrespective of diagnosis, and regardless of whether it's endocrine or psychological, do just look for and go with anything that helps.

[user1471539124]

OP there is a Genova diagnostics also based in the UK it's in Surrey the address is
Park gate house
365 west Barnes lane
New Malden
Surrey
Kt3. 6nb