Help with my neurological episodes!

[barnabybrown]

Hi, I've suffering from some neurological episodes for the past few years.  The symptoms started by being very occasional and rare, perhaps once a month and are now 3-5 times a day.  Here's some detailed info:

Symptoms ­ In order of occurrence:

Feeing in tummy, jaw loosens, general lethargy, lower facial muscles relax, trouble articulating lips, area around eyes
relaxes, shallow breathing, confusion, difficulty thinking and speaking, dexterity in the hands goes, general weaknes all over body, feels like body shutting down, sometimes I get palpitations if I panic. I often get pains just below my bottom right rib that coincides with the attacks, although this is not always consistent. I also suffer from general underlying lethargy constantly. 

Both friends, family and doctors have witnessed these attacks.

Controlling the attacks:   

Eating:  

Generally controlled by food.  I eat a huge amount of food daily.  If I eat constantly (perhaps every hour) I can stop them altogether, although still feel generally lethargic.  The amount of food I eat seems to be directly proportional to the amount of time I get before having another attack, e.g. If I eat a lot a get more time, if I eat a little I get less time. 
I generally try to eat a low G.I. diet.  Complex foods give me much more time than simple foods.  Although the low G.I. diet seems to be becoming less and less effective. If I do have an attack I can stop it by eating something.  All foods stop an attack, but if I only have a little bit, it will only stop them for a bit.  This also depends on how far gone I am, e.g. If I am just starting an attack, having a packet of crisps will stop it for a while, but if I’m far into an attack, the same packet of crisps might only give me just enough time to make some proper food.  
 
Toilet: 

I am very regular when it comes to going to the toilet.  However, my tummy seems to be very sensitive and this regularity is disrupted easily.  If I am unable to go to the toilet in the morning for whatever reason, I don’t get attacks that day, even eating small amounts.  Sometimes it can take a few days to get become regular again. If my bowel movements are disrupted for more than a day, I will continue not to have attacks until I am back in routine.  I will often get periods of perhaps 2‐3 days where I am slightly constipated and my attacks will stop or be minimised  for the whole period.

Smoking: 

Smoking can affect my attacks in 2 ways. If I haven’t given up, and I don’t smoke when my body is expecting it, I become constipated and this can disrupt my attacks for between 1‐3 days until I get back 
to routine. If I stop smoking altogether, I become constipated, perhaps for between a week – month, until my body balances itself out again and gets back into routine.  During this period my attacks either stop, or are severely minimised. Also when an attack is just starting, smoking makes me incredibly hungry and can bring on the attack more quickly.  However, if I’m already quite deep into the attack and am trying to make some food, having a cigarette can give me enough of a  perk to allow me to do this, where otherwise I would struggle. 

Other times I haven’t had attacks: 

The only other time recently my attacks stopped is when I had an allergic reaction to some vitamin pills I took.  I took B1, B3, B12 and folic acid.  I had to go to hospital to be checked and required liquid anti‐histamines after a rash 
appeared over most of my body.  However, the following 48 hours I didn’t suffer an attack and all of my 
underlying lethargy completely disappeared. I felt amazing, better than i have in years! Attacks gradually started to return from 48 hours onwards. 

Other info: 

I have/had a heart murmur/hole in my heart. 
I had an intersucsseption when I was 13 months old.  No bowel removed. 
My tummy is very sensitive and can become constipated and swollen very easily. 

Tests carried out so far:  All test came back normal.

Blood glucose levels (both during attacks and after fasting), calcium, electrolites, liver, kidney, bone density, thyroid (TSH, T3, T4), EEG (including epilepsy tests), ECG, and nerve conductivity.

I'm seeing a Neurologist (I have seen about 4 different ones now during this process) at the moment and would like to see an endochronologist.

Has anyone got any ideas at all?  Could it be something they're missing, or could be something to do with metabolism (as it seems to be so intertwined with eating and digestion)?

Thanks :)

[mandyjane46]

Ah well it was worth a shot.All i know is that reactions to foods types  can be extreme and cause all sorts of problems. So it was worth a mention.
It is tough  that you have to eat so often to avoid the attacks. It must mean that your life has been put  on hold and  must be very frustrating for you.
I have just lost a year and a half of my lfe( and so has my family) and only am now beginning to see the light because I researched and researched my problem, tried out solutions  and finally got the help I needed. So you will sort this out .Just keep believing in your own power and keep positive.
I wish you all the best.
Hopefully a medic might help you out.
MJ

[barnabybrown]

thanks MJ,

I've seen a dietician before, who changed me onto an low GI diet when she suspected diabetes and told me to go and see my doctor.

I'm not sure it would be an allergy as it makes no difference what I eat.

And the episodes are always a result of not eating, you know when most people get hungry instead i get these symptoms...

any other ideas anyone?...

any doctors in the house?  

thanks :)

[mandyjane46]

Wow..thats really tough for you. Has the possibility of food  allergy/intolerance been considered? I ask this because my son now 14 has food intolerances ( knownorange colourants,aspartame,lactose and now testing for gluten) that can make him really unwell.Prior to diagnosis of above he had bad asthma,ezxema,hay fever,skin boils,mouth sores,abdo pain,fatigue...........once removed these went....
I think your first appraoch might be to keep a food diary and symptom book for a couple of weeks(or less if obvious) to see if you can establish a link between diet and health..Of course the best diet would be the elimination diet...it starts with very plain food ie rice and then adds one food per day ie fish  ...then turkey..I cant remember it exactly but Im sure you can google it.It would point out any reactions and is far more accurate than just keeping a food diary with a general diet.However its tough and requires real committement..I really struggled with work and social times(I have allergies too) but I was so glad as it sorted me out too.I think in your case its worth a shot as you have suffered so long. I cant pretend to know what your problem is as Im not a dr but I do know we have alot of allergies in our family and they can make you feel really rotten.Maybe when you were in hospital you ate differnet foods or didnt eat...?
anyway good luck
MJ

[barnabybrown]

Hi, I've suffering from some neurological episodes for the past few years.  The symptoms started by being very occasional and rare, perhaps once a month and are now 3-5 times a day.  Here's some detailed info:

Symptoms ­ In order of occurrence:

Feeing in tummy, jaw loosens, general lethargy, lower facial muscles relax, trouble
articulating lips, area around eyes relaxes, shallow breathing, confusion, difficulty
thinking and speaking, dexterity in the hands goes, general weaknes all over body, feels
like body shutting down, sometimes I get palpitations if I panic. I often get pains just
below my bottom right rib that coincides with the attacks, although this is not always
consistent. I also suffer from general underlying lethargy constantly.  

Both friends, family and doctors have witnessed these attacks.

Controlling the attacks:    

Eating:  

Generally controlled by food.  I eat a huge amount of food daily.  If I eat constantly
(perhaps every hour) I can stop them altogether, although still feel generally lethargic.
The amount of food I eat seems to be directly proportional to the amount of time I get
before having another attack, e.g. If I eat a lot a get more time, if I eat a little I get less
time.  I generally try to eat a low G.I. diet.  Complex foods give me much more time
than simple foods.  Although the low G.I. diet seems to be becoming less and less
effective. If I do have an attack I can stop it by eating something.  All foods stop an
attack, but if I only have a little bit, it will only stop them for a bit.  This also depends on
how far gone I am, e.g. If I am just starting an attack, having a packet of crisps will
stop it for a while, but if I’m far into an attack, the same packet of crisps might only
give me just enough time to make some proper food.  

Toilet:  

I am very regular when it comes to going to the toilet.  However, my tummy seems to
be very sensitive and this regularity is disrupted easily.  If I am unable to go to the toilet
in the morning for whatever reason, I don’t get attacks that day, even eating small
amounts.  Sometimes it can take a few days to get become regular again. If my bowel
movements are disrupted for more than a day, I will continue not to have attacks until I
am back in routine.  I will often get periods of perhaps 2‐3 days where I am slightly
constipated and my attacks will stop or be minimised  for the whole period.

Smoking:  

Smoking can affect my attacks in 2 ways. If I haven’t given up, and I don’t smoke when
my body is expecting it, I become constipated and this can disrupt my attacks for
between 1‐3 days until I get back to routine. If I stop smoking altogether, I become
constipated, perhaps for between a week – month, until my body balances itself out
again and gets back into routine.  During this period my attacks either stop, or are
severely minimised. Also when an attack is just starting, smoking makes me incredibly
hungry and can bring on the attack more quickly.  However, if I’m already quite deep
into the attack and am trying to make some food, having a cigarette can give me
enough of a  perk to allow me to do this, where otherwise I would struggle.  

Other times I haven’t had attacks:  

The only other time recently my attacks stopped is when I had an allergic reaction to
some vitamin pills I took.  I took B1, B3, B12 and folic acid.  I had to go to hospital to
be checked and required liquid anti‐histamines after a rash appeared over most of my
body.  However, the following 48 hours I didn’t suffer an attack and all of my  
underlying lethargy completely disappeared. I felt amazing, better than i have in years!
Attacks gradually started to return from 48 hours onwards.  

Other info:  

I have/had a heart murmur/hole in my heart.  
I had an intersucsseption when I was 13 months old.  No bowel removed.  
My tummy is very sensitive and can become constipated and swollen very easily.

Tests carried out so far:  All test came back normal.

Blood glucose levels (both during attacks and after fasting), calcium, electrolites, liver, kidney, bone density, thyroid (TSH, T3, T4), EEG (including epilepsy tests), ECG, and nerve conductivity.

I've seen a few different Neurologists over the past 4 months and would like to see an endochronologist, as I am unable to work until i get this sorted out.

Has anyone got any ideas at all?  Could it be something they're missing, or could be something to do with metabolism (as it seems to be so intertwined with eating and digestion)?

Thanks :)