A New Level of Fatigue? Get Your Bloods Checked!

 

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Those of us used to living with Pots and EDS will know that fatigue (sometimes extreme) comes as part and parcel of these conditions. However in the last year and a half to 2 years I had developed a new level of fatigue that had just crippled me! I pretty much needed to sleep most of the day. I got up, had a shower, eat breakfast and by the time 4 hours had passed, my body was crying out for bed again. Every 4 hours or so I would need to sleep at least 2 hours and this continued throughout the day until I went to bed at night, it got so bad that my husband was beginning to miss me as I was always in bed!

I had my meds reviewed, I was on a new diet which had helped my gut related symptoms hugely but nothing I tried would help my fatigue.

I decided to get my bloods checked in July this year and promptly found out that I had anemia. My vitamin B12, Folate and Vitamin D3 were all very low and contributing to my major fatigue and related symptoms.

My doctor put me on a regime of B12 injections, once a week for 5 weeks then once every 3 months there after to maintain my levels. She put me on D3 liquid supplements and also on Folate tablets once a day for the next 6 months or so.

After my 5th injection which is due the next time I go in, they will do more bloods to see how my levels are doing and we can maintain accordingly after that.

What are the symptoms of Vitamin B12 Deficiency?

“Vitamin B12 is needed by all cells of the body in order to allow them to multiply. A shortage of vitamin B12 mainly affects red blood cells, because millions need be made every minute. A lack of red blood cells can lead to anaemia. The common symptoms of anaemia are tiredness, shortness of breath and palpitations.

There is also a type of B12 deficiency anaemia caused by lack of intrinsic factor. This is called pernicious anaemia. A shortage of intrinsic factor means that B12 cannot be absorbed properly. Pernicious anaemia has the same symptoms as anaemia, including tiredness, shortness of breath and fatigue. Other symptoms of anaemia can include:

• soreness of the tongue,
• loss of weight,
• pale skin, often with a lemon tint,
• intermittent diarrhoea,
• menstrual problems, and
• poor resistance to infections.

If the deficiency goes on too long, the nervous system is liable to be affected, causing:

• tingling of the fingers and toes,
• muscle weakness,
• staggering,
• tenderness in the calves, and
• confusion.”
• – HSE.ie/b12deficiency

 

What are the causes of Vitamin B12 Deficiency?

” The immune system normally makes antibodies to attack bacteria and viruses. Pernicious anaemia is caused by an autoimmune disease, which causes the immune system to make antibodies against other parts of your body. In pernicious anaemia, antibodies are formed that attack the stomach lining and damage the cells that produce intrinsic factor. This stops intrinsic factor from attaching to B12, and so the vitamin cannot be absorbed into your body.

Another cause is where the bowel cannot absorb the vitamin B12 because it has been damaged by disease (e.g. Crohn’s disease) or shortened by surgery (usually to treat bowel disease). If the bowel has been shortened by surgery, these problems can contribute to a condition known as short bowel syndrome. Short bowel syndrome is a group of problems affecting people who have had half or more of their small intestine removed. Common symptoms are diarrhoea, cramping and heartburn. Some people become malnourished because their remaining small intestine is unable to absorb enough water, vitamins, and other nutrients from food.

Occasionally, some people who follow a vegan diet may become deficient in B12. This is because B12 is not found in vegetable foods (such as fruit, vegetables and grains). ” – HSE.ie/b12causes

 

So have the injections and supplements helped so far?

I definitely found the vitamin B12 injections and the D3 especially were really good initially as they would give me an initial burst of energy for a day or two but recently I haven’t found them as great, but, I am sleeping less now which is great, however, I still need a lot of sleep throughout the day.

Now I get up in the morning and can stay up until evening time around 6 or 7 pm where I have to go to sleep for about 2 hours or I simply wont feel refreshed enough to get up before 2 hours. Then I get up at around 8 pm and can stay up until we go to bed for the night. Sometimes I may need another nap in the evening but usually I just go to bed for a nap now just once in the evening which is a huge improvement and has given me more of a life back.

So, no it’s not a cure by any means, but I believe if I didn’t get my bloods checked at the time that I did, I would still be sleeping my brains out all day so my simple advice to you is, if symptoms change and you notice a new level of fatigue that you haven’t experienced before then there surely is something causing that, don’t just automatically put it down to your EDS or Pots or regular diagnosis, if it’s new get it checked out and I would recommend getting your bloods checked. At least they are something that can be fixed and managed and may play a huge role in your level of fatigue.

Just be aware, explain to your doctor what is happening with you and ask for bloods to cover anything that may impact fatigue as I was told that Vitamin B12 and D3 bloods need to be checked for separately to regular bloods. So just for you to be aware of that 🙂

Best of luck,
Lette 🙂 (Fainting Goat)

 

Sleep Paralysis, Sleep Fainting and How Your Brain Can Frighten You!

This will be a bit of a long post, but bear with me… you may have experienced this too! 🙂

…it started when I was 15.

It was late in the night, about 4 or 5am. I found myself lying in my bed on the flat of my back. The room was dark but crepuscular light seeped in through the unlined curtains. The light of the hall outside leaking in under the door… Semi asleep, semi awake… a pressure on my chest, a looming, shapeless, black, figure crawling up my body.

I could feel its pressure on my body, I tried to move and I couldn’t. Emotionally heightened terror filled my solar plexus. My mind was racing, I was completely paralyzed by fear. My eyes were open, I felt wide awake, I had full control of my thoughts. I could see around my room, but somehow… I was still in my dream. The dream was being acted out in my room, shadowy dark figures were floating and moving eerily around my room. my sister snored gently in her bed, while I tried desperately inside myself to scream and call anyone for help…

A strange sound began to fill my ears… Behind low whispering voices, children laughing and strange music I had never heard before.

The looming, heavy dark figure was now up on my chest… I could feel its ghostly hands tighten around my neck. It didn’t make a sound. Breathing became a struggle as I could feel this creatures weight lying on top of me, fear choked me, I tried so hard to scream…

what was that sound??

Like a moan, it was high pitched, it varied in frequency and sounded for all the world how you would imagine a banshee would cry out and whail!!

I soon realized this sound was coming from me… I was trying to scream in my paralyzed state and it emitted from my throat a weak, eerie sound that sounded nothing like a scream, but in my dream I was screaming as forcefully as I could.

It’s hands closed over my mouth, it’s face right in front of mine, but it didn’t have a face… it was just a dark, heavy shadow with holes for eyes… it opened its hollow mouth and engulfed my face… My heart was pounding, I was sweating, I couldn’t breath, the distorted world around me was fading and just as I felt life was leaving me…

“LETTE!”

“LETTE!! Wake up your FREAKING ME THE HELL OUT!”

My eyes snapped open, and I was now properly awake, in my bed, my sister sitting up looking petrified at me with her knees up tight and her quilt pulled up to her chin!.

My weak, strange moan that was a scream in my dream had woken her… I scared the crap out of her and I was terrified beyond belief!

I decided I needed to know what this experience was, I am rational and I do not believe in the supernatural – only as an interest, I am fascinated by it, but thankfully I found a rational explanation.

I had just experienced Sleep paralysis.

Sleep paralysis is a phenomenon in which people, either when falling asleep or wakening, temporarily experience an inability to move. More formally, it is a transition state between wakefulness and rest characterized by complete muscle atonia (muscle weakness). It can occur at sleep onset or upon awakening, and it is often associated with terrifying visions (e.g. an intruder in the room), to which one is unable to react due to paralysis. It is believed a result of disrupted REM sleep, which is normally characterized by complete muscle atonia that prevents individuals from acting out their dreams. Sleep paralysis has been linked to disorders such as narcolepsy, migraines, anxiety disorders, andobstructive sleep apnea; however, it can also occur in isolation.^[1][2] When linked to another disorder, sleep paralysis commonly occurs in association with the neurological sleep disorder narcolepsy.^{[2] – Wikipedia}

I now get this 3 to 4 times a month. Sometimes I wake up with the strange moaning thing, which has frightened my husband so many times! Sometimes I just feel something touching me and the feeling of fear just makes me jump awake and there is nobody there. Sometimes I hear voices or music or strange sounds, its freaky!

There is nothing unexplainable or supernatural about this experience, it is quite literally your brain working overtime, and you happened to wake at the wrong time!

Here is a very basic understanding of how it works from my own experiences and perspective;

When you sleep, your brain releases some chemicals and hormones to literally paralyse your body so that you dont get up and act out your dreams (incase you decide to throw yourself out a window or harm someone while you are dreaming) This is a natural proces to help you recover and repair your brain and body from the day before, by keeping you still and sedated.

If you happen to wake during this process, you experience a transient state where you have muscle atonia (weakness) or paralysis, you cant move, you can open your eyes but the chemicals in your brain are still active… so you can see or hear or even feel your dreams around you in very lucid detail while your eyes are open and you cant move. A feeling of fear is associated with this and a looming shadowy figure is sometimes experienced… this thing is called; ‘The Hag’ appropriately named because of the fear and the pressure on your chest when you see it!

This is a very basic run-through of how this experience feels, Please read in detail HERE how it happens, it really is fascinating and I would love to hear your feedback on your own experiences.

Recently though, I have been experiencing something different… and very frightening from a health and medical point of view. I havent yet spoken to my specialist about this but I feel I may need to going forward.

I think I am fainting in my sleep!

WHAT? but you are already unconscious! how can you fall unconscious when you already are!?

I know, right? but please let me explain! It doesn’t work like the Inception thing! :p I dont fall deeper into my dreams…

I have Postural Orthostatic Tachycardia Syndrome because of my EDS, so I faint on a regular basis while awake. I have become acutely aware of the symptoms and feelings inside me when this happens and just before I faint. I have to be, so that I can try and control it as I sometimes stop breathing when I faint and this is not good for the ould head and brain and has caused nerve damage previously from the lack of oxygen! I have gotten better at noticing a faint coming on but sometimes I have no control and just hit the floor (insert ‘Let The Bodies Hit The Floor’ meme here!)

When I sleep, I dream very lucidly. In full colour and sometimes I can control how the dream plays out, not every time but nearly always in my dreams I chose flying as my method of getting around! (dont laugh, I really do and it feels exhilarating!) I have proper and extreme intense emotional feelings, I can touch and physically feel things, tastes, smells, pain, pleasure and extreme tiredness when I have overworked myself in my dreams!

Isn’t that crazy? If I play or do too much in my dreams, I can physically get wrecked tired and feel how it affects my body exactly like when I am awake, even though I am asleep and lying still. It is almost like in my dreams I have slipped into another me in the dream world!

Further to this, in my dreams I have started to experience fainting, just like I do when I am awake and active!

I feel the pressure in my head build, my temples and behind my eyes start to throb, stars spinning around my head, a dark tunnel seeps in from my peripheral vision making everything slowly go dark. My muscles feel heavy, I feel disgusting hot rising nausea crawl up from the depths of my gut and up into my throat, I begin to sweat but always feel cold, feel like I am going to vomit… A loud wooshing noise grows intensely loud in my ears, like I am falling through air.

While I am dreaming this, sometimes, I experience myoclonic jerking, my husband notices this. and I also can bite my tongue and the inside of my mouth to the point where I wake up with my mouth filled with blood.

The darkness closes in, deeper, deeper, I feel myself fall under into a faint, it literally feels like someone is just turning your ‘lights’ off and you have no control over it, then there is just darkness for a split second and I snap open my eyes and feel utterly dreadful!

When I wake I feel just like I feel after I faint in my waking state. I had been sweating, I am viciously nauseous, my body aches, I am physically weak and feel sore, tired, and confused… I have an urgency to both vomit and pee… I will get up, go to the bathroom, then hit the floor flat with a hard thump.

I have experienced this many times and wondered if I am in fact fainting in my sleep, or at least experiencing the precursor to a faint, then in my weakened state when I get up, I faint properly… it is all very odd but I did do a bit of research and found I am not alone, at all! Thankfully… I was beginning to worry about my own sanity! :p

This is called nocturnal syncope and I found a medical journal explaining a trial for testing this condition. It is an amazing read, HERE!

PATIENT HISTORIES

Patient 1 had her first nocturnal syncopal episode at the age of 40 years. After sleeping for some hours, she awoke and felt nauseous with abdominal discomfort and the urge to defecate. She lost consciousness while lying supine. She sweated profusely but did not bite her tongue. Her husband observed transient myoclonic jerking. After this, similar episodes occurred regularly (at least one a month) and only at night. The syncopal episodes never exceeded one minute and were atraumatic. She was incontinent of urine and faeces once. A tilt test provoked a vasovagal reaction followed by seven seconds of asystole and reproduced her nocturnal symptoms. Because of ongoing symptoms she underwent neurological investigations and a typical nocturnal episode was recorded during continuous electroencephalographic (EEG) and cardiographic monitoring (fig 1​1).). The EEG was judged normal by two independent neurologists. The ECG, however, showed a pronounced bradycardia (36 beats/min) during the episode, with an atrioventricular node escape rhythm. – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768202/

So this one particular lady experienced a lot of the same things as I did during these episodes. I also found other examples HERE and HERE!

A 2004 research publication suggests patients may awaken from sleep with symptoms of forthcoming neurocardiogenic syncope (Krediet, Jardine, Cortelli, Visman & Wieling, 2004). This suggestion may seem to contradict current teachings on this disorder. However, research shows that transient autonomic mechanisms that predispose to vasovagal syncope may occur during sleep (Shneerson, 2000, p. 1-15). – http://www.dinet.org/NCS/ncs.htm

So it’s nice to know im not going nuts, but these are crazy experiences which make some people think it may be a supernatural occurrence  when it is not. Your brain is just messing with you!

The sleep fainting is new though, and though I have found some medical papers on it, it doesnt seem to be extensively written about, so I would love to hear your experiences of Sleep fainting or Sleep paralysis. Please contribute and thank you for reading 🙂

– Lette