Vagus Nerve Attack

[knitty kitty]

Claire Grace,

I'm happy you have found this information useful!  

Do discuss with your doctor changes in your vitamins.  He may want to test for deficiencies before you start supplementing in order to get a baseline.  

There is a period after beginning thiamine supplementation where you might feel worse before you feel better.  This is called the paradox.  It's rather like blowing cobwebs out of a car engine that's been sitting for a while, but it does get better.  

Yes, do keep us posted on your progress!

 

[cyclinglady]

19 hours ago, Claire grace said:

Thank you, I had never read much about thiamine prior to this and Given how important it is I'm surprised it's not more widely discussed. 

 I had also been eating a lot of blueberries and I believe I did have tea and some chocolate that day as well🤦 So all together it was probably a bad combination.

I do take a multivitamin which is smarty pants prenatal PHD formula, Which states it contains 50% RDI of thiamine for Pregnant or nursing women however I am neither so So I'm assuming that It should be a lower recommended daily amount for me but since I have malabsorption It's really hard to tell whether I'm getting enough of anything and I frequently have symptoms of vitamin and mineral deficiencies. The hard part is determining how much Of each vitamin and mineral to take because taking them All individually would be nearly impossible and Taking too much of a multivitamin is also a bad idea because you can get too much of some other vitamins that are not safe in those amounts.

Does anyone know if there is a reliable way to determine nutrient levels In the body if you have significant permanent malabsorption? 

I frequently have symptoms of vitamin B , C and calcium deficiency and electrolyte imbalances, I don't have any thirst for water So I have to remind myself ..well basically force myself to drink it because without thirst it is usually unpleasant, and measure how much I drink each day.

 I lost most of my natural teeth and I am still waiting for medical clearance to get implants, (which I've had a lot of trouble finding anyone who would be willing to do) This is related to the reason I have the Vagus nerve injury in the 1st place which is that I have ehlers danlos syndrome/ TNXB type hypermobility and this can affect The arteries and predispose to tissue fragility and aortic aneurysm. 

When I had my first 2 teeth removed I lost consciousness and my blood pressure dropped very very low and I went into shock, and then they had trouble stitching my gums because the stitches ripped right out. So they had to take the teeth out In separate appointments only 1 at a time and without using epinephrine because I have a bad reaction and they cannot stitch them because the stitches will not hold and cause more damage.😭 This is why they want a medical clearance for the implant surgery.

I've been trying to get the clearance for quite a while, and made 2 appointments only to have the offices call me to cancel after reviewing my records and refer me to a specialist who is much too far away for me to drive there.

 

It's been 3 years since all my teeth were removed and I'm still not able to get anything done about it. I currently have no chewing teeth at all, They wouldn't even give me dentures because they're waiting on medical clearance for implants. So I am eating basically the same diet as a 6 months old baby🤦😭 literally baby food pouches and toddler meat sticks that are soft enough to be chewed by the tongue. 

 

So I guess it's no surprise that I have trouble maintaining weight, at 5 ft 7 in tall I weigh about 107 lbs (BMI 16) anything below 18 is considered under weight. 

 To top it all off since corona the stores have been running short of these baby food pouches and the cost of having them delivered has made my husband quite upset. Especially when I need to especially when I need to eat about 20 of them a day😭🤦and I still barely maintain weight at 16 BMI.

I'm so lost on what to do about all of this and frustrated by how little options I have, but if I don't figure something out soon I am at very high risk of developing EATL leukemia lymphoma 😭

sorry for the long post... Too much on my mind🤦

 

 

 

Why are you eating baby food only?  Surely you can eat soups, stews, veggies, that are well cooked and can be placed in a food processor or blender.  That is how I fed my baby.  

Why three years to get clearance for dentures?   Your teeth will move and can impact your ability to get dental implants.  At a minimum,  retainers are used.  

 

[Gloria L]

On 10/20/2011 at 11:25 AM, MariaBanelli said:

I was only recently diagnosed with Celiac but had a whole bunch of symptoms leading up to what eventually became very frightening.

I had, for some time been having all the symptoms of gluten intolerance, I just hadn't related it and neither had my doctor. I was getting alarmed at how much weight I was losing and how many hours in a day I found myself sitting on a loo. I went down to 82lbs before the first big attack came.

One day I was sat on the loo as usual but suddenly felt very sick and as though I was going to faint. My stomach felt like it had a rolling full term baby in it. I ended up calling my husband who managed to steady me and put a cold cloth on my head and then as soon as it came, it went.

I got up but within seconds I found I couldn't breath. It was as though my lungs had paralyzed. I must of been able to breath a tiny bit because the ambulance took a good five minutes to get to me but I was in total panic, I thought I was going to suffocate. They got me straight onto oxigen and told me I had hyperventilated but as soon as my breathing settled I started to go into shock. I started to feel extremely cold, like I had been thrown in ice water and i was shaking uncontrollably. My lips went blue and my arms and legs felt icy cold (all the blood was obviously rushing to major organs.

Once I was stabilized a doctor came in and suggested I had COPD or a bad asthma attack and so I was sent off for tests which showed no asthma and no signs of COPD.

A week later it happened again, exactly the same way and again once the busy emergency room had stabilized me and checked my heart and lungs, they sent me home. By now I was getting really frightened and so was my husband. My doctor scanned my liver, my womb, ovaries and stomach and just kept shrugging his shoulders.

10 days later it happened again but this time a consultant came in to see me and explained I was having something called Vagus nerve attacks and he suspected it was the small intestine that was the culprit. He took some blood tests and 'BINGO' it showed up Celiac disease.

 

I have now been on a totally gluten free diet for 3 months and touch wood have had no sign of another attack, though the thought of having another in the future terrifies me.

I have put on 17lbs in weight and am no more a regular at the loo than anyone else!

The only thing that really upsets me is, during this period of un-diagnosis my hair really thinned out. One of the things they discovered is that I was iron anemic but that has now been remedied. I hope my crowning glory does come back but even if it doesn't, I'm so glad that I am no longer poisoning my body and that I am getting better. I suddenly feel so full of energy and that old brain fog I had, had for so long has vanished.

 

To date, I haven't heard of anyone else having this sort of attack but would be interested to hear if anyone has had something similar.

Hi Maria, have you had the same episode after going gluten free?