Fnd

[Renwick1]

Hi all I haven’t been on the site for some time ie posted anything I’m really struggling at the moment as my brain is not working properly at at all.try short walks and it is so scared with so much brain disruption it feels like I’m near the end .living on my own but can’t do this much longer .what a thing to live with there doesn’t seem to be any light at the end of the tunnel. Would love to swap shoes with health care professionals for a week so they could understand they ask my symptoms but I’m lost for word as to describe what’s going on. I know I’m not being believed as I look perfectly normal on the outside;I think I must be a banana rotting from the inside out. Take care all

[Chingona]

I understand not being able to describe what you are going through to doctors. I have that problem too, it's hard especially with brain fog and yes I've wished the same thing! If only one person could feel what it's like to be in my body! Also I feel like I've never had that sensitivity to pain or sensations, like my daughter for example can describe in detail all the sensations in her pinky toe after getting a splinter, and for me, I'm like something feels not right, but I couldn't explain the feeling.

I think its so important that you are going out and taking walks, I know it's hard but fresh air and getting out of the house is so good for your mood.

I know that when I started getting sick, I was living alone with my two small kids and my parents told me that I needed to either live with them or move in with my boyfriend ( I know I'm an adult but I'm also Mexican, and parents still have say in my life! LOL)

Living alone is hard, I'm wondering if there are any options for you, so you don't have to feel that fear. I know sometimes when I've felt my symptoms really bad and my heart feels like it's going to stop, i think what if this is it?

You'r not alone, wishing you a better day today.

[Renwick1 in reply to Chingona]

It’s not brain fog it just feels like my brain is numb and all the things going on in the body are so wired and unpredictable; thanks for your reply take care ps I’m through with doctors what a waste of time it’s not their fault they just don’t have answers

[Chingona in reply to Renwick1]

I'm so sick of doctors too!

Like you said, it's not their fault, they just don't have the tools to help. I've found more relief from diet, thc, exercise, and seeing a chiropractor than I ever have from a doctor's visit.

[rubykins44 in reply to Chingona]

Hi Chingona, can I ask please what sort of diet you follow? I'm newly diagnosed and am wanting to find a practical way to help myself and hoped nutrition could figure in the plan. I can't seem to find much on the subject though. Thanks

[Chingona in reply to rubykins44]

HI Rubykins!

Yes I'm more than happy to tell you about the diet I do. I swear it has helped me SO MUCH. It's the Ketogenic diet, it's used for epilepsy, fibromyalgia, diabetes,and cancer. If you do some research it is surprisingly healthy and beneficial for your brain, although it's the opposite of what we think of as healthy.

Basically it's a high-fat diet. Your body metabolism changes when you reach ketosis and instead of your body using carbs for energy it uses fat which improves brain function. I keep my carbs to 20 grams a day in order to stay in the medically beneficial ketone blood range( over 2.0). It's not always easy, I've been doing it for over 7 months and in conjunction with the THC/CBD I've gone from three seizures a day to once a month, and I have more energy, I cycle, swim, and run daily, about 10 hours a week. This time last year getting out of bed and walking to the mail box was about as much as I could do.

My menu is usually:

butter/coconut oil coffee ( put in blender, sounds nasty but is the most delicious coffee I've ever had)

Bacon and Eggs

Salad with blue cheese dressing, nuts, chicken

Steak or beef

Snacks: I make my own keto chocolate, jello, nuts, protien shake, chia seed pudding

Some of my friends who are on keto to manage diabetes make these amazing keto tortillas, bread, cheesecake, icecream, I'm just too lazy!

Feel free to send me a message if you have any more questions!

Chingona

[rubykins44 in reply to Chingona]

Hey thank you so much for all that information. It's fantastic that you have improved so much. I will definitely give it a go. Is it possible to be gluten free as well on this ketogenic plan as I was considering that as well?

ruby

[Chingona in reply to rubykins44]

Yes, definitely, as a matter of fact in a lot of ways you end up gluten free on this diet.Most things with gluten have lots of carbs. One thing I would recommend is if you're serious about it to get a ketone blood meter, it takes a lot of guess work out of the equation, because no amount of research online will tell you exactly what YOU need to eat to be in ketosis, our bodies are all different.

[rubykins44 in reply to Chingona]

Thanks, I'll have a good look into it all, appreciate your advice

[cgarff]

Renwick, there are So many of us out there with FND that may knoe what you are experiencing, buy

T it is hard to go off your description a bit, at least for me it is. Try to think of how you were before FND happened. What could you do vs couldn't do. Now if you can please try to think, adn I know it can be hard believe me, I think we can all be in the same boat at times with thisn but try to describe in simple terms what you are experiencing.

Like for me, one of my movents is like dry heaves with throwing up. Simple, but others know what you are saying because they have been there, felt that. In my head.. My whole FND started with my voice going out from a cold. There are times still now 8 1/2 years later where it is so bad that I might get a hoarse voice, some words, partial words or no words at all. Yet the words are spinning around in my head with the inability to get them out except for pen and paper.

FND can crush your hopes and dreams, it can turn your life upside down and make you feel alone as possible, but please know that you are not!!! We are all here to support one another, to give each other encouragement when no doctor can. I would be happy to chat more if you would like. Best of luck to you in finding your answers.

Cgarff

[Andmark]

Hi

I totally understand what you are going through. Have had tests for parkinsons, had two MRI all clear all that has come back positive is evoked potential brain to left hand and ogliclonal bands and abnormal pressure. My diagnosis is FND so to me if you don’t tick all the boxes Neurologists cop out is FND which is unfair to the patient because that is vague, and how do you treat vague that’s right some CBT and physio !!! Sorry for little rant !!! But what we are sold is aload of unfair. It is in our heads but it is the brain not functioning correctly and health care professionals are also not functioning correctly either !!!

Andy

[Jazymay in reply to Andmark]

I know this is 6 m.onths ago, but you said, "that’s right some CBT and physio !!! " that is, exactly

[Jazymay in reply to Jazymay]

Sorry, phone glitch. Yes, that is exactly how I feel. Some physio! Evien though last year I dug 2 ponds, decent sized ponds and I cut hedges and I decorated a room to be a healing room and I move furniture around all the time and just before I got sick, I cut up a sofa to make a chaise lounge and recovered it and re-installed springs etc.

I am not lazy or inadequate as far as physical ability goes. But when I was admitted to hospital because I was so wobbly I could not walk at all. Sorry.o Ok. Reboot. I was admitted to hospital and seen by Neuro on a Friday. Given diagnosis and expected to be in for a week. So over the weekend I used a walking frame and walked up and down the corridors to get out on the Monday. Saw Neuro on the Monday. Saw physio who was really pleased and happy to send me home the next day. Tuesday Neuro said I should stay longer for rehabilitation because she "didn't want me to go home and sit around doing nothing"!! WTF? No physio told me to walk up and down all weekend. I decided to because I owanted to go home. The physio ended up convincing her I could go. 3 months later, there was no mention of a follow up, as I have complex ptsd, obviously that caused this! I "Just have to trust that what has caused this will come up", my long term psych told me. She says the Neuro is one of the best!

Not a happy bunny. For years I have been strong, capable and activel

[RobertWT]

Hi,

I UNDERSTAND!

Healthcare professionals, even the very best of them, understand from the view of a third party. They do not live with this condition. They have no concept of what it IS (in real terms) just what can be observed or reported on. Our ability to report may indeed be flawed. We MUST educate, support and learn.

Together we can.

Can do what?

Move on.

Find solutions where the 'experts' say there is none.

Defy the nay-sayers and show that we are just as able (albeit in our own manner) as the rest of the population.

I have a confession:

Yesterday, in Tesco's I tried to get some pots of yoghourt from the top shelf (I was in my wheelchair at the time). Yes, I was the miscreant who deposited three dozen pots of Tesco FinestWest Country Vanilla yoghurt onto the lower shelf. I did try and pick them up (honestly) but at least there wsn't any mess.

So why am I even mentioning this? Well it made me realise that I actually could have avoided the yoghurt avalanch if I had wound in my neck and ASKED someone. (The out of reach fruit and fibre packets later were retrieved by doing so.)

You are a valuable resource in the FND picture/jigsaw. You have some of the answers. Keep sharing your experiences - even the less than perfect ones. There are clever people 'out there' who someday (sooner, I hope, rather than later) can put all the peices together and make a picture.

I believe that the best banana smoothies are made with bananas the skin of which is black (my wife disagrees, but that's marriage, isn't it?)

You ARE both PERFECT and NORMAL. Be in no doubt about this. My Buddhist practice involves chanting a phrase - Nam myoho renge kyo - in which the character 'myo' has a number of meanings. "Perfectly endowed" is just one of these meanings. Overall the phrase describes our entire body, all of it. Capable of achieving enlightenment - just as we are.

Sorry, went off on a minor sermon then. I have been practicing Nichiren Buddhism for over 30 years, seeing everything (one hopes) through the 'eyes of a Buddha' becomes a habit after a while. The last 20 months I have suffered with FND (thanks to a clash of meds after a relatively minor operation.) So, as I said above, I UNDERSTAND.

Please do not doubt your strength and tenacity. Or if you do, take a day off from time to time.

Please keep in touch.

Best wishes.

Robert

[Renwick1]

Wish it was a day of but these days it’s everyday off, someone said about different pressures that’s what it feels like all through the body,a day off from this weird thing would be nice, puppet on a string springs to mind just don’t know which one gets pulled next and we’re all in the same boat of turbulence, very frustrating though.

[princessabi]

I wish I knew how to help. My daughter is 9. She started with PNES a few months ago. I feel so lost as to how to help her. We are getting no where with the dr's. This illness is impossible.. I understand how you all feel.

[Renwick1]

It must be far harder when it is a child that has it. What is PNES if you don’t mind me asking

[Chingona]

PNES are functional seizures or non epileptic seizures. You can have the same symptoms of a an epileptic seizure, but it isn't caused by electricity in your brain like epileptic seizures, so during a seizure you would have a normal EEG. It's traditionally believed that it's caused by underlying stress or emotional trauma, but I also happen to believe that it's possible that doctors just don't have the technology yet to measure PNES, my neuro has talked about new studies that are starting to figure out differences in people's brain with PNES.

Anyways, the seizures are real, and anyone with them can't control them. It's also possible to have PNES and epilepsy at the same time (that's what my doctor's think might be happening to me)

I could only imagine how scary it would be have your child go through that. I have a nine year old daughter and I feel for you Princessabi.

When I was having lots of seizures I would get frustrated that people would fuss all over me, and then I adopted a dog last christmas eve (he was on death row!) and guess what he has seizures!! what are the chances that I adopt a dog to be around when I have seizures and he has them too?!

Anyways when I saw my Machete have seizures I finally understood why people get so fussy, It's quite horrible to see someone go through that. My heart goes out to you Princessabi and I truly hope your daughter gets better soon. I know from my perspective my seizures don't hurt, they are mainly an annoying, embarrassing, inconvenience than anything else.