Waking up at night feeling extremely unwell

[Willhm]

I wasn't sure where to post this as I don't know what's causing it but any help is welcome. I am posting now after having been in/still slightly am in, one of these 'episodes' and really want to get to the bottom of it. I used to think it was my stomach/GI system causing me these issues but is really don't think it is now, at least not all the time.

Anyway these are my symptoms tonight on what I would consider a milder instance;

Blocked nose (or at least completely blocked left nostril)

Waking up very hot

Very sore throat especially when swallowing

Bit of headache

Feeling very nauseated

Feeling anxious

I was lying on my right side and moved onto my back and my heart started really pounding

Weakened and drained

Tender glands


The worst is just how ill and nauseated it makes me feel, it is something I have suffered with practically the whole time I have been ill. (although in the past sometimes I think it was sometimes caused by something else and wasn't so bad).

Before I got ME I had glandular fever (or mono or EBV) and that is what I am feeling quite like now.

Does anyone have any ideas? Feel free to ask me anything or suggest anything. I am beginning to wonder if could have anything to do with nose and throat problems, I haven't been checked for any but have been meaning it but I am pretty much housebound, but could that cause such this symptoms?

Thank you very much for reading.

 

[Martial]

Well generally congestion usually becomes the worst when we are asleep at night and it accumulates. Just out of curiousity were you ever tested for Mycoplasma? That could cause all those symptoms and would make a lot of sense. It is usually very commonly accumulated in mucous producing places during infection. It is one of the very few bacterias that do not contain cell walls.

I also wake up sometimes in the middle of the night with worsening or weird symptoms, its the worst in the morning though for sure lol

 

[Willhm]

Thank you for your reply. I haven't but I haven't been checked for anything to do with my nose or throat even thought I have felt I should for quite a little while. Like I said I am pretty much housebound so it would require me to get taken by parents and feel more unwell because of it, but I suppose if that's what I need to do.

 

[Martial]

Well it sounds like a deviated septum could be coming into play, I have the same thing. You probably could be having some form of sleep apnea as a result of the congestion and what not as well, have you ever looked into getting a sleep study done?

What are you currently doing to treat stuff right now?

When you first got sick was it officially diagnosed as EBV, or Mono, or were they just symptoms that they could not find a source too?

Have you looked into methylation yet, or checked for any possible underlying infections that could be happening now?

 

[Willhm]

I haven't looked into a sleep study, I don't even know if you can get them in the NHS (I'm in the UK). If I had a deviated septum would I be able to physically see that I did? And similarly with the sleep apnea, is there anyway to know if I actually suffer from that before going to a doctor.

I am not currently on any medication, just trying my make things as easier for myself in simple ways.

I got a blood test and it came back as glandular fever, sorry it wasn't sure if they were all the same thing or not but called slightly different things in different places.

 

[Legendrew]

I get this horrible night time maliase with sore glands, throat and almost everything else you mention. It usually happens following higher than normal mental or physical exertion the day before. For example I had it last night as I went to a few garden centres and potted up plants for 1-2 hours while standing. I usually find that the next day I'm more achy than usual but by later that day I'm feeling better so long as I don't overdo it again. Alongside my 'attacks' I also experience internal trembling. I suspect these symptoms are some sort of hypersensitivity in the nervous system and while quick unnerving and initially frightening I've learnt to live with them whenever they do occur.

 

[SOC]

On the chance that you are suffering from overnight dehydration, you could try chugging 500-750 ml of electrolyte drink at bedtime.

Many PWME have low blood volume and overnight dehydration so it's worth trying. Best of all, you don't need the NHS to do it.

 

[justy]

I suffer from this also, in exactly the way Legendrew describes. @SOC one big problem for me is waking to pee at night. if I have to drink lots before bed I will be up 4 - 5 times and trouble getting back ot sleep in between. Therefore I restrict fluid in the evening to stop this. When I drink a lot it literally goes straight through me. When driving long distance to Spain this winter I had to purposely dehydrate myself otherwise I was peeing every half hour and it was not always possible to stop!

 

[Willhm]

thank you for all your replies.

it is odd for me because sometimes it seems to be caused by doingong things too stressful the day before, one of worst wprst culprits is going on my iPad.

Another is if i stand too long, pqrticulary before bed, it can be a very short amount of time.

Sometimes it seems to be linked to feeling sick in day due to eating too quickly or too much and the consequences of that. (I am on a very restricted diet so I am on the foods that seem to give me least trouble but also provide calories).

But when there is this constant issue of nasal problems that seem quite extreme and have been constant maybe the whole time i have been ill? (5 years almost) but seem to be worse in the last year or so.

Another interesting thing that I due to look into is the possibilty i have scoliosis. Ever since i was ill i noticed a odd curve and misshapeness to my spine and just considered it part of it but maybe it isn't.

The reason i mention it is because i think i am applying extra pressure to my stomach from my left-leaningness, so i me the effort to sleep on my right or back. Sometimes i have woken feeling extremely ill and realised i have been sleeping on my left, applying pressure to my stomach.

So many options, i think maybe different nights it could be different things, or a combination producing similar symptoms.

I don't know...

 

[Legendrew]

I suffer from this also, in exactly the way Legendrew describes. @SOC one big problem for me is waking to pee at night. if I have to drink lots before bed I will be up 4 - 5 times and trouble getting back ot sleep in between. Therefore I restrict fluid in the evening to stop this. When I drink a lot it literally goes straight through me. When driving long distance to Spain this winter I had to purposely dehydrate myself otherwise I was peeing every half hour and it was not always possible to stop!

I find I have to get up in the night more times to use the toilet than ever in my life before. I suspect it is the same hypersensitivity issue as it seems to get worse while all my other symptoms are flaring too.

 

[SOC]

I suffer from this also, in exactly the way Legendrew describes. @SOC one big problem for me is waking to pee at night. if I have to drink lots before bed I will be up 4 - 5 times and trouble getting back ot sleep in between. Therefore I restrict fluid in the evening to stop this. When I drink a lot it literally goes straight through me. When driving long distance to Spain this winter I had to purposely dehydrate myself otherwise I was peeing every half hour and it was not always possible to stop!

Yup, that would be consistent with low blood volume due to low aldosterone typical in ME/CFS. You drink a lot and pee a lot because your body is not keeping enough water in your blood (in layman's terms ). Drinking more doesn't help much, although drinking more electrolyte drinks might help a little. Restricting fluid in the evening might be making your overnight dehydration worse.

"Loading" can help temporarily. You chug down 500-1000 ml of electrolyte drink as quickly as possible. Since your body can't pee it out quite as fast as it goes into your blood, you'll have more blood volume (and feel better) for a while. You still pee it all out eventually. Sipping the same amount over the day does not have the same effect. You have to put it in faster than your body can take it out and the effect only lasts a few hours.

Since you're in the UK, you're not likely to get a doc to test you for OI. My best suggestion is to go to your GP and tell him or her about the excessive drinking and peeing. Don't be moderate in your description -- describe it at its worst, which is what most people do. Be careful not to give the impression that you are drinking "too much", though, or you'll get another psych label. You might even keep a record for several weeks of how much fluid you drink and how often you have to pee.

I suggest you either ask to be tested for hypoaldosteronism, or simply for a trial of Florinef to see if it helps. If your GP is sympathetic to ME/CFS, you could show her in the ME/CFS Primer where it says hypovolemia in often seen in ME/CFS and Florinef helps. If s/he is one of the anti-ME/CFS docs, I would leave ME/CFS out of the conversation entirely and act as if you don't think they're at all related.

S/he might was to test you for diabetes insipidus, which would be good since your problem might be that. There are treatments for that such as desmopressin.

 

[taniaaust1]

I think it is dust mite allergies which give me a blocked nose (and sometimes when I seem to have allergies really playing up, I can get a mild sore throat too).

Waking up very hot

The burning up during the night or getting very hot (even when its not actually hot). Last week I finally worked out its caused by low fluid volume. If I miss my florinef (which I take to help my blood volume) .. I then will have a very dreadful night with waking up very hot, feeling like Im cooking. I can get so hot that I end up not being able to get back to sleep.

"
Bit of headache
Feeling very nauseated
Feeling anxious
Feeling weak and drained"

All those symptoms can be caused by low blood volume.

I was lying on my right side and moved onto my back and my heart started really pounding

Shifts in posture even small ones which cause issues like that.. could be a sign of dysautonomia. Have you been tilt table tested? I personally suggest you get tested for dysautonomia issues as that can happen with low blood volume etc