Answer ASAP please : Re Seizure's - Functional Neurol...

Functional Neurological Disorder - FND Hope
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Answer ASAP please : Re Seizure's

Keepstrong
Keepstrong
β€’49 Replies

Hi everyone.

I have only started having the Seizure part of this condition and I'm getting quite worried.

My first seizure that only lasted five seconds happened two weekends ago. My husband said it was the very same as a epilepsy Seizure. My second was last weekend. Last night I was quite upset after a reply was posted to me on a support forum and then I went into a very bad Seizure that lasted at least a minute.i don't know when I'm having a Seizure or had one it's only when I go to move that my body is seized up an it takes a few minutes for everything to return normal. My husband warns his hands , places them on my jaws to stop my teath grinding and to try open my jaws. He then rubs my arms and legs to get them going again. But today I have been so bad with the one I just took a few hours ago that I can't unlock my shaders an my jaws fully only half way. Dose any one out there please have a answer to is each seazure gone to get worse and is this normal to have them so quickly and last longer each time? An is there anything else my husband can do when I'm in the Seizure to get me to come out of it? We are so both very worried and concerned. My MRI. 3 weeks ago was normal so Neurologist said it's not Epilepsy but it is the full on form of FND and it's the same as multiple sclerosis and Epilepsy but it's my signals and sencerys that's damaged the brain is fine. Please reply if you have any advise at all. I be very grateful. I'm after doing guided imagery relaxation and this normally resolves pain and my muscles spasms from my FMS & M, E and Arthritic spasms. But nothing is working now. Please advise πŸ˜£πŸ˜£πŸ€— keep strong and be well πŸ€—

49 Replies
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Keepstrong I have had to have all the inside of my mouth removed teeth gums this was due to what I thought were seizures but its been explained to me that rather than bieng seizures more stalls some miss fire neurologicly we are all different but what you have described fits what I started with I now have stalls all day sometimes bad sometimes bareabel please keep up your vitamin b12 that's important because each stall or siezure depletes neutriants from the body big time I hope I have been of help blessings mark

Keepstrong
Keepstrong in reply to Mat08

Hi mark.

Thanks so much for your support and advice.

I attended immunology regularly the last two years and my IGM was being monitored closely because there was a dip in the blood results when they done them every 3 month's and last year it was gone completely , but thankfully my other two immune jeans are at it's correct level. But my B ,C and D levels are all normal Thank God.

But if some one comes near me with cold then I would get the flue and so forth.

Thanks so much though for the heads up on it I can ask my Family doctor to keep an eye on it in-between immunology appointment's. But Mark is there anything at all Joe an I can do to stop the seizure from lasting as long and from getting so bad each time? 😣 Hugs of thanks Ce.πŸ€—

AjaStar
AjaStar in reply to Keepstrong

Hello angel keepstrong πŸ˜‡ I’m so sorry to hear about your seizures. I have had three episodes where my hands legs mouth right side of face freeze up with an intense heaviness pressure on my head and chest. Only once did my right arm shake for a couple seconds. I haven’t had a full on thrashing seizure like other people and I’m scared it might soon happen to me. It has happened to you and I feel for you. I know you must be so scared and looking for answers. From other people’s replies I’ve read that cognitive behavioral therapy, physical therapy, meditation and CBD oil helped people lessen their seizures. I know it’s very hard and are probably tired of hearing this but try to calm down and avoid upsetting situations. I’m listening to some thunderstorms nature sounds because I’m upset today. My husband and I had an argument today. I wanted more comfort and more of his presence because I’m scared, I’ve been having a bad couple days, but he’s feeling suffocated. Anyway do your research on my suggestions and I hope you feel better.

Keepstrong
Keepstrong in reply to AjaStar

πŸ€—πŸ€—πŸ€—πŸ˜£πŸ˜£πŸ˜£ ahhh my sweet Angel star. So sorry your upset here is my Hugs lass to you all the ways from Dublin Ireland πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ₯°

Remind your husband that you know it's frightening for him and upsetting but to please take into allowance that if he's upset and in turmoil because the love his wife is like the to try Imagen what it's like for you seeing him like this and actually having this condition. πŸ€” Let him think on that why your being needy on days your not well.

As to me my Angel star lass πŸ€— thanks so much for the advice and support, unfortunately my Seizure's I can't tell you what happens I do be totally gone not conscious till my hubby brings me around and it is like as he described like someone in full on spasms Seizure head hopping jaw stiff teath grinding limb's totally tight and spasmed shaking an eyes rolling an right eye lid twiching endlessly.πŸ˜£πŸ˜•πŸ˜’β˜ΉοΈ But sure look I'm alive to tell the tail but I tell you lass the migraine I do have when coming too is horrendous and I have to stay on total dark quietness for half an hour in order for it to pass .but the after effects of the Seizure's seem to be getting worse. I'm thinking of maybe seeing my family doctor before the week is out, what do you think πŸ€”πŸ€”

As to back to you lass πŸ€”πŸ€— can you try write a story on a A4 book as to your activities before you feel down or unwell an maybe do a bit of colouring on a adult colouring book or colour some Mandela pictures or colours by number's ? This way even if you don't like colouring it's still going to stop you from feeling scared and you will untimely get relaxed as your doing it am your subconscious won't know your upset an you won't get a attack of any part of the FND

unfortunately it's When I'm asleep my Seizure's happenπŸ™„ but while your feeling unwell and upset it's feeding your subconsciounes and that's going to fry your sencerys and trigger off some part of the FND , this much I have managed to monitor and research.

So can you try that my Angel star? πŸ€— Just put some uplifting music or CD you like that you can bop to while sitting on the chair and have a nice white or pink candle going somewhere you can see it but is burning safety somewhere out of your reach encase you have a Seizure and just settle yourself down to do some art work. Download a few colour adult apps . An your mood will uplift okay? πŸ€— Thanks so much lass for your advice an let me know how you get on ok?πŸ˜€πŸ˜πŸ€— hugs with vibes of healing comfort love and light πŸ™ sent to you. Keep strong πŸ€—πŸ™πŸ’“

AjaStar
AjaStar in reply to Keepstrong

Yes angel πŸ˜‡ keepstrong, I will change my mood. Called my mom to come over for support and it’s been a nice visit. How has your day gone so far today?

Keepstrong
Keepstrong in reply to AjaStar

Hi sweet Angel star.πŸ€—

Glad your Mam came over and yous had a good time πŸ˜€πŸ€—

My day was a very hectic one. I had to bring my daughter to her appointment's with her psychiatrist and then to her psych nurse for Medical review. She's still very weak on her legs since she came out Hospital where she was for ,4 months in total. Half a month on Life support and in a coma the other 3 and 1/3 month's trying to get her limbs going again as she came back paralyzed after the coma. All because she was medically neglected in a psychiatric ward where she was over the Christmas due to depression after coming out of a toxic relationship. They wouldn't get her seen to when she picked up the killer flue in there.

Then after daughter appointments her dad collected her and I had to go see my own physiotherapist . I then went with my son for a sit down for an hour over s cuppa coffee as I was recked. Then we did the full week shopping then I came home cooked dinner . My hubby and son helped me, it's so strange having to have someone being in my kitchen helping me do dinner because it's normally just me. I do be like a big chicken pushing my arms out no I'll do that and then they get fed up and go off haha but now I can't because I keep losing Ballance and dropping thingsπŸ™„πŸ˜’ so it's a matter of having to share my kitchen and allow them to help me πŸ€£πŸ€£πŸ€£πŸ˜€πŸ€£

Then after that I spent time with my son and daughter playing cards and spending quality time with them before my son head's back to his fiance for the weekend .

And now I'm in bed fighting with my subconscious that it's not allowed let me have a Seizure when I fall asleep.😞 It worked last night so I'm hoping it will work tonight. How about you dear one what was your day like?πŸ˜€πŸ€—πŸ€—πŸ€—πŸ˜‡πŸ˜‡ Keep strong and be well πŸ€—πŸ™πŸ˜‡

AjaStar
AjaStar in reply to Keepstrong

Wow angel πŸ˜‡ keepstrong, you have a lot on your plate. I do hope you will allow yourself a couple days at least where you don’t do anything. You need to rest, don’t cook, you can have takeout for a couple nights. I felt guilty at first for doing it so often but I can’t push myself too much. I hope your sleep is restful tonight.

Hidden
Hidden

In my experience, resisting or worrying about FND symptoms makes them more challenging. I found it best to "lean in" to the symptoms, so to speak, by which I mean that I let them happen and didn't try to stop them. For me that doesn't mean to stop looking for solutions, but it did mean organizing my life around my symptoms. For example, I would go mute for long periods of time at the beginning of my FND onset. Rather than fight it (i.e.: try to force words out), I started using my phone and tablet's text-to-speech feature to talk when I was mute. I started using a wheelchair for all getting around. And so on. I also had very severe seizures, but I found that people touching me made it so much worse because my muscles would cramp (dystonia), and having my husband try to help was physically painful to the touch and also incredibly frustrating when I couldn't communicate with him while I was "frozen." Eventually, we agreed that he'd only keep me safe (i.e.: so that I didn't fall or hurt myself) and let the seizures pass. It's hard to know the underlying origin of your specific seizures, but upon reflection, mine seemed to be a hard-wired (and unsuccessful) way for my body to try to relieve the severe muscle tension I was experiencing.

The first couple of months of FND was the worst: new symptoms would creep in slowly, but they reached a plateau very quickly. Over time, the intensity and duration of the symptoms diminished (though didn't ever stop).

All in all, stress reduction was key, including the stresses I was putting myself under to hurry up, get better and return to "normal." That didn't happen, and even now that I'm mostly symptom-free, I have to be careful with stress so that I don't trigger something. I'm still battling the occasional worry that pops up and makes me wonder, "Oh no! Is it coming back?" but I remind myself that I'm fully prepared to deal with it if it does, so it doesn't matter. I calm down and move on.

There are lots and lots of recommendations here. You can try supplements, diets, exercise plans, etc. There are things that will help, but there are no one-size-fits-all solutions to FND, so you'll need to experiment. I found it very difficult to make any progress at the beginning because (a) I wanted to try everything and (b) I was in a hurry to get "back" to my old life. Once I realized that I was "stuck" the way I was, I found it easier to slow down, research, and try one or two things at a time. CBD, for example, wrecks me, but it seems to do others a lot of good. On the other hand, mushrooms and LSD worked great for my symptoms. Various supplements were helpful for brain fog and fatigue, but nothing helped my convulsions and seizures until recently (and that involved RF ablation on my neck and lower back for spinal issues). Anyway, the best advice I can offer you is don't look for magic bullets because you're likely to be disappointed, which leads to stress, which makes things worse. Do, however, keep pursuing things. I strongly recommend trying to identify *specific* (even "SMART" as in Specific, Measurable, Attainable, Realistic and Timely) symptoms or problems that you can seek medical help for specifically. Bring it up with your doctor and make it clear that you're not looking for help with anything but that. For example, I was having a lot of bloody stools, but my family doctor wouldn't help because of all of my other problems, so I made an appointment with a colorectal specialist, found that I had hemorrhoids, got them dealt with and boom! I was suddenly in less pain, no more bleeding, etc. The long and short is keep knocking off things that add to physical stress or distress. Over time, more and more fundamental problems will become apparent and you can deal with them, too. Of course, the other thing is not to give up looking for a doctor that will do *anything*. It's very hard to navigate the medical system with FND, and unrelated problems tend to get dismissed, so you'll just have to keep hunting for a doctor to help, and even then they might only help with a small piece of the problem. In all, with FND there's this mythical "care team," but in my experience, the "care team" consists of you and those *you* can find to help you, whereas I was expecting some sort of "coordinator," who wasn't me, that organized the team.

Keepstrong
Keepstrong in reply to Hidden

Hi 7th chakra πŸ™πŸ€—πŸ˜‡ Namaste dear friend.

Thanks very much for your support and reply with advice.πŸ€—

Unfortunately my Seizure's are when I'm in bed asleep and I'm not aware I'm taking one. 😣

It's only when I'm coming round I do have a massive migraine headache and I feel my husband warm hands on my two jaw's massaging trying to unlock them as they do be sealed shut and my teath do be grinding. My arm's an legs do me poker straight and weighs a thon weight and my head dose be bent back and my eye lid twiching endlessly.☹️

I'm doing so much research and self monitoring and treating on NFD and my physiotherapist is delighted with it, I just had my appointment now that's why I only got to press like and only replying to you now.

I'm very greatful for your support and Im going to keep in mind your advice πŸ€—πŸ™. I wish you every success on this journey too and please feel free to contact me also if ever you want to chat.πŸ€—

Sending thanks an positive healing vibes of comfort love and light πŸ™πŸ˜‡πŸ€— keep strong πŸ€—

AjaStar
AjaStar in reply to Keepstrong

I didn’t realize u can get seizures while sleeping. Makes me wonder about me, since two days ago I woke up with scratches on my face and it’s not the first time that’s happened. I’m sorry you can’t even escape this in your sleep. Listen to the thunderstorms while you sleep see if you like it

Keepstrong
Keepstrong in reply to AjaStar

🀣🀣🀣 the hubby loves when I play the YouTube sleep thunder storms mediation music but as for me I'm terrified of it especially in real life 🀣🀣🀣🀣

I use the guided imagery relaxation or I'll use the sleep soft healing music video to help me nod off.🀣

Thankfully not taking any Seizure when I'm awake only always asleep.

Please God it stays that way. Your hubby surly would of woke or told you if you had been taking them in your sleep as my hubby said he couldn't but know I was taking one because the hole bed goes with the way my body is in a full rock hard spasm and is jilting up off the bed and the sounds of my teath grinding and my head bouncing off the bed flung back also in a spasm. But no two people Seizure's are the same so maybe yours is different.πŸ€”πŸ˜˜

My son fiance takes stress Seizure's. She's wide awake and scratches her face pulls her hair pushes her fist's out at anyone that tries to put their hands in her to calm her down. Maybe this is something similar your taking as to the scratching part?πŸ€”

Something to definitely as your hubby about ? πŸ€”πŸ€—

Let me know how you get on won't you an ill keep digging into research for answers what to Do and share the results with you and everyone here.

Big hugs my friend and chat with me anytime even though message and I'll get back to you Asap. Keep strong πŸ€—πŸ™πŸ˜‡ and be well πŸ€—πŸ€—πŸ˜‡πŸ˜‡πŸ‘Ό

AjaStar
AjaStar in reply to Keepstrong

I’m not talking to my husband since our argument last night. He said he feels suffocated since I need him to comfort me too much, so I called my mother instead lol πŸ˜‚ AnYway, he has told me before that he has seen me grinding my teeth many times during my sleep. I tried my mothers CBD oil today I felt no different but I felt no worse so I guess that’s good. It probably takes a few days to feel the effects, I just wanted to see if it gave me a reaction and since it didn’t I’ll buy my own soon...they are expensive. It’s funny that the thunderstorms scare you 😜 I find it so soothing. I hope your daughter feels better soon.

Cognitive behavioural therapy helped me when I had my first onset of seizures. Even if it doesn't lead to the cessation of seizures for you, it can help teach you skill sets to manage them and expectations you set for yourself.

I understand that seizures are very scary when you haven't experienced them before. The stress of this might be making the symptoms harder. I'm wishing you luck.

Keepstrong
Keepstrong in reply to Impishcat

Hi impishcat πŸ€—

Thanks so much for your support and reply.πŸ€—

I'm only to familiar with what a person goes through taking an actual Seizure as I grew up watching and helping my older sister and brother when they were talking epilepsy Seizure, but to actual take one yourself it quite even more scarry.☹️

But I'll definitely take your advice into the fact and thanks so much, I'm really great full.

It's funny you mention the DPT work and Cognitive therapy as I had actually only download the free app on playstore last week and I just didn't get to use it yet, you see I know what's causing some of my Stress levels constantly on the Go, it's because I had totally disconnected myself from my own being since January as my daughter was medically neglected in a psychiatric ward she was in for depression at Christmas after coming out of an extremely toxic 10 ye relationship, and she was so Sick over the Christmas and New year's Eve an yet they wouldn't get a medical doctor to come see her, instead on day five into the second week I refused to leave till they got a psychiatrist to see her who still didn't get a medical doctor but instead sent her for a exray and started her on antibiotics, but it was to late. She was rushed from the unit to the emergency department not able to breathe. She ended up then in ICU within 12 hrs and was straight away put in life support and into a induced coma.

Next morning after doctors working on her over night throughout the night, she had to be sent to Ireland only Hospital while still attached to the life support full strength and in the coma for what was called ecmo treatment but she was to critical. We were told next 24 hrs will tell us if our 28yr old only daughter out of four children was gone to survive that lasted five days instead of 24hrs . She was on the full life support for 2 1/2 week's. She was then taking off life support but was totally paralyzed.

She was transferred back to a medical rehab Ward in the hospital she'd been transferred from and ste was there for 3 month's, she's got the use of her limbs thank God and her Speach is back. But come 4pm she's totally wiped out. Consultant says it be 6 to 12 months before she has full functionality.

She's very brave and strong thank God.

But she gets very low very quickly and it's full time job for her dad and I. We all have fibromyalgia as our daughter was dignosed as well while in Hospital . I have it ,20 year's my hubby has it 4 year's. My youngest son who has borderline autism an is 25

He was dignosed last year. So trying to get them all in track and adjust to the physical changes they need to make exercise and diet wise is full time job but now with me having this horrible NFD things are haywire.

I'm to see psychiatrist tomorrow who monitor's my CPTSD every 6 month's so hopefully he will have answers for me as to advise as well. Thanks again so much for your support. As you and the rest of These wonderful helpful friends comments here with advice I just have to learn how to manage Stress. My hole body is totally closed off to myself my emotional health seems just on act immediately to any situation as quickly as possible and resolve it with out any form of panic and I don't seem to be able to stop being like that. I think it's what's causing the Seizure's , it seems sudden stress. I handle it, resolve the situation but soon as I'm in bed and go asleep that's it I'm off taking the Seizure's.☹️ Time will heal as they say. Just have to be patient. πŸ™„πŸ˜’

Anyway I have taken up enough your time sorry. I hope that you enjoy the rest of your week and you yourself are doing well.πŸ€—πŸ˜‡ Sending you soft healing hugs with comfort and light πŸ™πŸ˜‡πŸ€—

AjaStar
AjaStar in reply to Keepstrong

That’s why I believe FND is genetic because many of us have family members that have similar symptoms. It’s in our DNA but there hasn’t been research that finds the gene that makes us susceptible to FND. Their research on FND is still very new, since for hundreds of years they thought it was β€œall in your head”. It’ll take years before we have a breakthrough and get a medicine that is actually for FND patients, but I am holding on to the hope that it will be sooner rather than later,

Keepstrong
Keepstrong in reply to AjaStar

You think it's bad lass what we are going through trying to get MFD recognised by Medical professionals? Oh I tell you it's not when you compare it to when multiple sclerosis first was experienced.

The Medical professionals use to lock the patients up in a mental health asylum and say their systems where all imagined till one day an actual consultant himself was struck down with it and then all the research started. Back then it was not called multiple sclerosis it was called creeping paralysis. But as it scared medical professionals who were being dignosed with it or a loved one, they then changed it to multiple sclerosis.

It's the very same with M.E Myalgic encephalomyelitis. It was called the yuppy flue.

It took for am actual researcher to be struck down with it and it monitored and was recognised that it's as serious as it is and so very real.

Just like FM'S Fibro myalgia syndrome. It was and sadly sometimes still classed by doctors as all in the head it's just Imagened and should be taken no notice of. Then along came doctors like dr martin rutherford who he himself was struck down with it.

You can go to YouTube and type in behind the B'S Dr Martin Rutherford and you be shocked how dangerous and serious F'M'S Actually is.

Please God one day these and especially our conditions be given the proper attention and recognition so rightly diserved.

Sorry for gone on 🀣🀣🀣 I'm just over the past 20 year's so passionate about these disorders and lots more that it just really gets me going when it's just dismissed as it's in your head πŸ˜‘πŸ˜ πŸ€’πŸ€£

I hope you have a wonderful nights Rest Angel star lass πŸ€—πŸ€—πŸ˜‡ chat soon. Sweet dreams. Keep strong and be well πŸ€—πŸ˜˜πŸ™

AjaStar
AjaStar in reply to Keepstrong

When it was FND awareness week, I wrote a post saying the only way we can get FND awareness is if a celebrity or politician were to come down with it. We need someone well known to the world or a doctor to have this disorder so that the proper research can be done for it.

Hidden
Hidden in reply to AjaStar

Dr. Stone highlighted Oliver Sacs' development of functional paralysis after suffering severe damage his quadricep. See jnnp.bmj.com/content/83/9/864. Dr. Sacs wrote a book about the experience called "A Leg To Stand On" in 1984. When a man like Oliver Sacs can develop a problem that falls under FND and the world is unchanged, I suspect that high-profile visibility isn't going to move the needle that far.

Keepstrong
Keepstrong in reply to Hidden

Hi 7th chakra πŸ€—

I replied to your reply in our dear friend Ajastar reply.πŸ€— Thanks so much an today was proof as to what you said here.😞

Wishing you a wonderful night sleep well and keep strong πŸ€—

AjaStar
AjaStar in reply to Hidden

It will if Kim Kardashian were to get it lol it needs to be a celebrity that has millions of followers

Hidden
Hidden in reply to AjaStar

That seems doubtful. Remember when Kim's husband lost his shit in the oval office, started spewing word salad about the nature of time and whatnot? There was about 24 hours when the topic of bipolar disorder became big news, and then it faded back into the noise that is today's media.

Perhaps someone *will* come along, the Jesus Christ of FND if you will (and, I'm pretty certain that the Christ *did* deal with FND in quite a few people, but that's a different matter), but I don't think that anyone should hold out hope that such a person or event will trigger a revolution in the experience of patients with FND or in the treatment of FND. It will take stead insistence by us sufferers.

Keepstrong
Keepstrong in reply to Hidden

Hi 7th chakra. πŸ€—πŸ˜€

Yep totally agree and I do know and am putting everything out there that someone is going to be in higher education and training to all these form of conditions and will help put us all on the right track.πŸ€”πŸ€”πŸ€”πŸ€—πŸ˜€πŸ˜‡πŸ™

I hope your doing okay?

I class us all here as very strong determined warriors and survivors πŸ€—πŸ€—πŸ€— and u ask the universe and everyone higher power to constantly guide us with knowledge and experience and education but also support for us to be able to get ahead this condition and for us all to be always able to be here for each other πŸ™πŸ™πŸ˜‡πŸ™πŸ™πŸ˜‡ be well my friend and keep strong πŸ€—πŸ™πŸ˜‡

Keepstrong
Keepstrong in reply to AjaStar

Ahhh Angel star πŸ€—, you really come up with them, your gasπŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ˜‚ that's very true.

The reason why FMS is getting recognised at the moment is due to all the YouTube videosand public publicity that lady Gaga has of how it is effecting her and her career and the concerts she's had to cancel over it and there is more celebrities out there too to has it an is sharing their stories, buttttttt 😑😠 unfortunately lass it's not to get the information about FMS out its to get more publishing about them out there , so they get more sympathy votes and more product promotions sold 😑😑😑😑😑.

Don't get me started lass 🀐don't get me started 🀐 πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚ LOL to late you already did, family look out in now I. One of those moods πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚( joke) LOL.

Anyway Angel star πŸ€—πŸ€—πŸ€— no point in us putting energy into situations we can't change but we can get the word out there and kick up enough for professional to sit up take notice and look into this horrible condition and realize this is not a figment of the mind and a put on condition and it's not only just through over whelming stress or trauma that causes it.

It just fumes me as doing this research, how so many people have been told " oh you had a terable accident as a child, oh you had a awful trauma experience, or most other people's most anoiing one and is labelled with so many Medical and psychiatric favourite just to get rid them is.....oh" dysfunctional childhood , oh you were abused, your family where dysfunctional and took it out on you, oh you came out of it are going through a very negative abusive marriage/ relationship . The list is just going on an on and some of these unfortunate people are either taking that bull and not being properly dignosed πŸ™„ or are spending their life savings on getting Counciling to only be unwell end up in Hospital to be told you have a physical condition like MS /, Lupus etc but so is this condition and others like. FMS/M.E etc πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„πŸ™„ oh it rises my dandruff I don't have πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£ see told u you've got me started thanks LOL 🀐 πŸ˜‚πŸ€£πŸ˜‚πŸ€£. Annnyyywaaay lass πŸ™…πŸ’πŸ™† LOL catch up with you in a BIT gone to answer messages and more replies so you take care, be well, and keep being your awesome self πŸ˜πŸ˜€ and keep strong πŸ€—πŸ™πŸ˜‡πŸ’“

Keepstrong
Keepstrong in reply to AjaStar

Hi my Angel star friend πŸ€— yes sadly it's true what you said but it's also true what our friend 7th chakra has said too.

My appointment with the psychiatrist I see once s year for CPTSD today was s total waist of time in a way.

He was seeing me today in relation to the Neurologist who made the dignose of NFD last month had asked him to.

I had given him the link of YouTube of Dr Martin Rutherford and Fibromyalgia behind the BS to look at last year to bring him up to speed on the confirmation of how serious FMS is and how he himself had it and how it's all related to so many serious conditions and is part of the MS family. But unfortunately he is very young and is under the impression that FND . FMS .M.E are all stress related and it's "JUST THE BODY LETTING OUT THE STRESS FROM THE BRAIN BEING ON OVER DRIVE" Manage the stress and thats everything sorted. That's his belief. I mentioned to him he's old school on young shoulders and he's way behind the times. I also mentioned about the research I'm doing into this FND and treatment is cognitive behavioural improvement and DBT programs.

He told me that with all my Medical knowledge, experience and courses I have taught my students over the years. That I'm the most entalect person in the building considering what I went through both as s child an young adult and no he wouldn't be recommending me for either them course's as it be a waist of my Time because it's things I would if taught and i be better off just dealing with the CPTSD therapy work I'm doing and he will make a appointment for me to come back for feed back in 3 month's time on how I got on with it. He also said about the Seizure's is caused also because of stress and with me being an expert with clients on how to handle panic and anexiey attacks I just need to teach myself to do it too. And when I said I already do and it's when I'm asleep I take them, he just informed me he's not putting me on medication for it that my appointment with Neurologist end this month will help me . I was not happy needless to say as you both can imagine. And 7th Chakra is right it's not going to move the needle much. I seen that today with this appointment today especially when the young professionals have been taught old school

I hope you angel star and 7,the chakra have had better day then I did today. But I had a nice evening with my hubby, my son and future daughter in-law.

I wish you both and a wonderful night. Sleep well keep strong πŸ€—πŸ€—πŸ€—πŸ™πŸ™πŸ™πŸ˜‡πŸ˜‡πŸ˜‡πŸ€—

AjaStar
AjaStar in reply to Keepstrong

Dear πŸ˜‡ keepstrong. I am so sorry and feel bad that you went for help and were dismissed. Why didn’t he hear you...why would he not want to help you and offer you some kind of relief and set up the cognitive behavioral therapy for you? It would not be a waste of time, cause sometimes we just have to feel we are doing something, anything, to get ourselves better. I had a couple doctors like that as have many here in this forum, it comes with the territory with this stupid FND. The only medicine you can rely on is your family so hold on to that.

Keepstrong
Keepstrong in reply to AjaStar

Hey my Angel star πŸ€—

I replied most of the answer to this reply in my ASAP Answer post so I'll save you an everyone from reading it again and save my hands too an just ask you to read that reply πŸ˜‡πŸ˜‚πŸ€£πŸ˜‚πŸ™ˆπŸ™ŠπŸ™ˆπŸ™Š

But it's okay he didn't listen to me, I tell you and everyone reading this just why.πŸ€—

These professionals with all their years of Medical school and deplomas that yes they did work hard for, find it much easier to just pass a patient off to someone else like what my shrink did yesterday to someone else so it's no longer their headache or case to deal with. Like my case yesterday he passed me to my CPTSD therapy program couch and my family doctor and my Neurologist, so his tracks are very well covered and his hands are wiped of me because he's leaving next week, that's his case closed. Now do you see?πŸ™„πŸ™„πŸ™„πŸ˜–

But I'll tell you this lassy,πŸ€£πŸ˜‚ that's okay because it is going to make me more stronger than ever and even more determined to get this dignoses out there and researched even more properly.πŸ˜€πŸ˜πŸ€­πŸ€­πŸ€­πŸ€­πŸ€­ Shhhhh don't tell anyone ....🀫🀫🀫🀫🀫we don't want the πŸ™… one's who call them selves""" expert's who know about this condition """"" to know my plans πŸ€«πŸ€«πŸ€«πŸ€«πŸ€«πŸ€­πŸ€­πŸ€­πŸ€­πŸ€­πŸ˜‚πŸ€£πŸ™ŠπŸ™ˆ

He'll yeah we do πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£

see told you in the other reply, you have me started for the day πŸ˜‚πŸ€£πŸ˜‚πŸ€£

Anyway Lass thanks so much to you and everyone here for all your support, Thank God no more Seizure's since that last nasty one.πŸ™πŸ™πŸ€—πŸ€— Please God it's the last,but I know It may not be and I just have to be mind wise ready to deal with it if I do have one. But I'm using everyone here's advice that I'm so greatful for ofbug dose πŸ€—πŸ€—πŸ€—πŸ€—

Be well my Angel star πŸ€—πŸ€—πŸ’“ and keep strong πŸ€—πŸ™πŸ’“

I’ve seen three neurologists regarding seizures two say I definitely have epilepsy spikes in my temporal lobe and my new neurologist who wants to but hasn’t yet wants to diagnose me with FND which would have to make my seizures non epileptic. I’ve done a lot of research on the differences and it seems the only way to truly determine if it’s epilepsy is to have an eeg hooked up during a seizure. Even then if the activity is deep in your brain the Egg can’t record it...There are also a couple things they look for so if you can get a video of your seizure that can help them determine them. I’ve managed my seizures by 90% with the ketogenic diet and high cbd and low thc( the keto diet alone is very effective and I only take the thc at night now) The non epileptic seizures it seems only has therapy and counseling as management. Feel free to message me!

Keepstrong
Keepstrong in reply to Chingona

Hi dear friend πŸ€— thanks so much for your support and reply especially your kind offer to message you πŸ€—πŸ˜‡ I'm very greatful.

I be seeing the Neurologist end this month and I'm taking notes of everything everyone has suggested and also blood tests and other tests that I want to have done.

Thanks so much for your support.

I'll message you soon as it's quite late here I'm Ireland.

Chat soon and thanks again. Keep strong πŸ€—πŸ™πŸ˜‡

Chingona
Chingona in reply to Keepstrong

Of course! And good luckπŸ€

Keepstrong
Keepstrong in reply to Chingona

Thanks my Angel star πŸ€—

Keepstrong
Keepstrong in reply to Chingona

πŸ€—πŸ™πŸ˜‡πŸ’“

How are you feeling today? I hope someone was able to give some good advice. So this just started coming on? That can be scary, only thing i recommend is maybe mindfulness techniques to accept the situation and know it's not going to kill you, just more like a bumpy ride and the brain is a terrible driver. Easy for me to say though, you as the sufferer are the one going through it. Hope you're doing better today

Hi Redbeard 33.πŸ˜€πŸ€—

Thanks very much for your support and reply.

Yes just out of know Where.

But it's when I'm asleep it's happened.πŸ˜•πŸ˜ž In a way I suppose I was lucky it's not when I'm awake at least I was in bed an couldn't do any damage to myself.

I do have no idea what so ever that I'm actually taking one.

Yes I used to teach mindfulness and guided imagery relaxation and stress management meditation.

I use it on myself every day and and Im Reiki Master and a fair few alternative therapies therapist . So I do a self healing treatment every morning and night.πŸ˜‡πŸ™

How about you how are you coping?πŸ€—

Okay today thanks for asking Redbeard , but I wasn't to happy earlier as yosy if read here in my replies to other friends that replied with support and advice like your good self πŸ€—

Thanks again. Sleep well and keep strong πŸ€—πŸ™πŸ˜‡

AjaStar
AjaStar in reply to Keepstrong

If you continue the nighttime seizures and since your other doctors won’t help you I suggest going to the pulmonologist and ask for a sleep study apnea test, you are hooked up to all these wires so they will be able to record what happens in your brain and body when u are sleeping and maybe you can find some answers and get some kind of treatment.

Keepstrong
Keepstrong in reply to AjaStar

Hi Angel star πŸ€—πŸ™

I already have sleep apnea lass for a few years now and I'm on a Cepap mashine.πŸ™„

I so wish these Seizure's where nightmares like you mentioned,at least I could move on from it but they aren't, I'm sound asleep with a total blank mind because I would of went asleep with a sleep guided imagery relaxation of some kind an I also do a self healing treatment of Reiki and Angelic healing. Plus my insomnia dose not keep me asleep for very long πŸ™„πŸ™„πŸ™„

I just wake up and once I awake I'm awake.😏 Hence why I'm awake since 6 this morning and answering everyone message and reply and i was only asleep for four hours πŸ™„.πŸ€£πŸ˜‚

I. Hope lass you are rested and thanks for the thought your really just awesome sweet friend πŸ™πŸΌ thank you. πŸ€—πŸ€—πŸ€—πŸ’“ I hope you are doing better then few days ago? Be well and keep strong πŸ€—πŸ™πŸ’“πŸ™πŸ˜‡

Damn Keepstrong, it can't be pleasant for you. I'm fortunate seizures aren't part of mine so i have no idea how you feel, but you have my sympathy.

Have you tried CBD oils yet? I've read it can have positive effects. No getting stonned involved πŸ˜‚.

I'm good, thanks for asking. Just trying to laugh at the mess πŸ˜‰

Hope you find something that holds back those seizures.

Take it easy, Lee

Person after my own heart πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ bring humour into chaos and chaos comes into order πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ yep you can have use the rights to that everyone else does I say it to πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ™ŠπŸ™ŠπŸ™Š

I tried the CBD oils and all I got for it was an extra Pain, it gave me a headache and feeling of upset tummy πŸ™„πŸ€­

The hubby and family even my friends are on my case to just give it a try again, easy for them they don't or have to use it πŸ˜‚πŸ€­πŸ™Š it's like being a child who is Sick and is being shouted at with a large hand Infront their face with a big spoon of medicine and being screamed at I don't care if it makes you feel Sick it's to make what your Sick with better πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ€­πŸ™Š I mean seriously????πŸ€”πŸ€”πŸ€”πŸ€”πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ€£πŸ€£πŸ€£

I was so delighted saying to the Neurologist when I was in hospital that thank God I don't take Seizure's and now I'm eating my word's πŸ˜–πŸ˜‘

Ah sure look arnt we alive to crib about it but instead we don't crib we get ahead the condition and let it know what's the words of that song πŸ€” oh yeah 🎡🎢🎼🎀 do do de do de do de do CAN'T TOUCH THIS πŸ˜‚πŸ€£πŸ™ŠπŸ€­

Hopefully soon we be all able to do it.πŸ€­πŸ€—πŸ€—πŸ€—πŸ€—

How are you doing today?

Be well and keep strong πŸ€—πŸ™πŸ˜‡

Ah you tried CBD already, that's poop it didn't work. I hear good things but then again, the reviews could be written by friends of the company, all conspiracy like haha.

Maybe different brands are better, I'm not sure though and it can be expensive. It would be good to have someone here who knows the score on it i suppose.

You need a Mary Poppins, with a spoon full of medicine song to get those meds in you πŸ˜‚πŸ˜‚.

Ah damn that is unfortunate πŸ€¦β€β™‚οΈ. Has the neurologist gave you any advice on how to cope with seizures?

How is going today, i hope those seizures have behaved themselves 😠. I'm okay, bit slow today, reading is hard and replying is slow. Going out later, not looking forward to walking down the street looking like I've been in the pub all day haha.

Lee πŸ˜πŸ‘πŸΌ

Lee this is Where you can tease your friends and say ,,"""" oiiiiii yous all have to be out of pocket to look this dam good drunk I don't it just comes naturally πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ™ŠπŸ€­πŸ€­πŸ€­πŸ€¬πŸ₯΄πŸ€ͺ haha.

As to the oil's I have researched on it and yes it's highly recommend for pain and especially Seizure's.

Thankfully either I'm not sleeping enough to go into one or my meditation guided imagery relaxations on YouTube is working πŸ˜‚πŸ€£πŸ™Š

Sun is massive here in Dublin Ireland today so gone to litterly go for a stroll πŸ€£πŸ˜‚πŸ€£πŸ™Š and try not let gravity win by hitting the pavement πŸ₯΄πŸ€ͺπŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ™Š I'm glad your gone out too it's the best medicine and no please don't send Mary Poppins to me that lady use to scare the Day lights out meπŸ€£πŸ˜‚ no wonder I hate umbrellas πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ™ŠπŸ™ŠπŸ™Š you be well and stay strong and I be InTouch soon πŸ€£πŸ€—πŸ€—πŸ€—πŸ€— Ce πŸ€—

Haha, aye that seems like a plan. Well it is my Friday drink day but just in the house with the missus, she will need to hit the squats hard to carry me up the stairs later πŸ˜›.

Yeah I've been looking too but hesitant on the buying process. I'll need to sort out online shopping trust issues and try it. I'll type up a wee review if i do, but may not be enough info for those with seizures i suppose.

How do you feel the with the meditation or guided meditation? I tried one with some work therapy and it made the tremors worse. Could barely walk out πŸ€¦β€β™‚οΈ.

Oh sweet! Enjoy that Irish sun, we got the same here, so will be heading out soon after kids get back from school πŸ˜‰.

Mary Poppins phobia haha, jeez poor miss poppy. Enjoy the sun Ireland today πŸ˜πŸ‘πŸΌ

Lee

πŸ˜‚πŸ€£πŸ˜‚πŸ€£ tell your Mrs to do what I do, give you a blanket and tell u see u when u go to the bathroom πŸ˜‚πŸ€£πŸ˜‚ trying to wake my hubby up when he falls asleep even without his bottle wine us hard enough so it's blanket of get up to bed before u nod off πŸ˜‚πŸ€£πŸ˜‚

So much for the sunshine πŸ˜‚πŸ€£πŸ˜‚πŸ˜‚ it belted down with hailstones πŸ€¨πŸ€¨πŸ€¨πŸ˜‚πŸ€£ but I got to my GP appointment, she's giving me a letter to go to the Emergency department in our local hospital to get checked out because of the Seizure's that she feels it may not be NFD but she's totally blind to it and has only newly aware it's out there. I told her I'll go if I have another one so she said I must get a ambulance not Go in the hubby car πŸ™„πŸ™„πŸ™„ she must know what he drives like πŸ€£πŸ˜‚πŸ€£πŸ˜‚ joking he's a good driver especially at driving me up the walls at times πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸš™πŸš˜πŸš— better sign off and do some my diaries . I write what guided imagery meditation I had used the night before and how it worked for my stress levels and if it helped me sleep an for how long. Then I do a diary of pain relief what pain I had and what one the physical conditions I have that's causing it and how long it lasted and what I did to release it. And if I have had a medical appointment I write in another diary who I seen and and what the outcome was. So I have to do today's gp appointment and the psychiatrist appointment yesterday . πŸ™„πŸ™„πŸ™„πŸ₯΄ I hope you and your good lady an the kid's have a great evening πŸ€—πŸ˜€πŸ€—πŸ˜Ž try not fall into the bed πŸ₯΄πŸ₯΄πŸ€ͺπŸ€ͺπŸ˜‚πŸ€£πŸ˜‚ be well keep strong πŸ€— Ce.

Hahaha, I'll pass that on to her. Beer night starting soon. Been out for a few hours there, legs and arms exhausted. How dare they πŸ˜’πŸ˜‚. Hailstones here too and went out in my shorts haha.

Seems like a caring GP tbf. I have heard not alot of GP are too clued up with FND, weird since it by all accounts its pretty common πŸ€·β€β™‚οΈ. A log of it is a good idea!! I did one day pain diary but forgot show doc when there this week πŸ€¦β€β™‚οΈ.

Enjoy the rest of your day Keepstrong. Beers and music for me excellent mix I'd say πŸ˜πŸ‘πŸΌ

Lee

πŸ™ˆπŸ™ˆπŸ™ˆπŸ™ˆ shorts? Come on it's not that warm yet πŸ™ŠπŸ™ŠπŸ™Š no wonder you were sore and no wonder it was hailstones πŸ€£πŸ˜‚πŸ€£πŸ˜‚πŸ€£ joking haha.

Ye my Gp I must say is brilliant and very caring thank God, it's hard to see her as it's a big practice if GPS an it's funny she's actually one of the doctors who is not even my on my GP card but the one who is isint there much she's another surgery and is always on the Irish news for different reasons to do with supporting heart or hearing awareness.

But the lass I do see in her place is very thorough bless her πŸ€—πŸ˜‡ she was almost welling up with tears when I was telling her what happened with the shrink yesterday and just refering me to her and about my Seizure's, she gave me the letter to go to emergency department today but I told her it's only if I take a Seizure . She said she had to give me the letter because she would not rest easy over the weekend if anything happened me and it was something else that was dignosed instead of the NFD. Bless her little cotton socks πŸ€—

Anyway enjoy your bears and please give the Mrs s can she probably needs it to build up her strength to get you up the stairs πŸ˜‡πŸ€£πŸ˜‚ tell her I'm posting a can of red bull to give her wings πŸ€£πŸ˜‚πŸ€£πŸ˜‚ night night Lee . Keep strong πŸ€— Ce.

I assumed to much from the scottish weather but kept me cool. Down to the knees shorts tho, not speedos πŸ˜‚πŸ˜‚.

I've done the same in my GP practice too! Patched the docs on my card and the one i ask for now helped get me a diagnosis, she's a great help. All it takes is someone who gives a crap sometimes.

You got a real cool doc there, that's some proper caring, exactly what you need from a professional.

Oh yes i will indeed. Candles lit, cold beers, she got her wine and she also say, "much appreciated, thank you" haha, she will need that red bull to haul me up those stairs later πŸ˜‚πŸ˜‚πŸ˜‚.

Night Keepstrong! Take it easy and stay safe πŸ˜πŸ‘πŸΌ

πŸ˜‚πŸ€£πŸ˜‚πŸ€£ tell her she's very welcome πŸ˜‚πŸ€£πŸ˜‚ and glad it's knee shorts you went out in or your poor wife be needing more than wine an red bull because your knees be locked before you πŸ€¦πŸ€­πŸ€£πŸ˜‚ nite nite to you both and sweet dreams. Chat soon keep strong both you and be well πŸ€— Ce.

Louyse
LouyseFND Hope UK

Hi. Really sorry to hear about your seizures. Unfortunately that is my biggest FND symptom. For me they got worse (I was diagnosed 5 years ago). I now take several pro-longed whole body seizures per day where each can last between 1 - 3 hours and I am rendered totally paraplegic and mute but can feel all pain. I've found nothing has helped.

Sorry, I don't want to upset you. Not everyone's case is the same and hopefully your seizures might remain short.

Cheers.

Lou

Keepstrong
Keepstrong in reply to Louyse

Oh wow Lou πŸ€—πŸ€—πŸ€—πŸ€—πŸ˜£β˜ΉοΈπŸ˜­ you poor lass I'm so sorry your going through that.

What you have explained of how you are after the Seizure's, that's the way I come out of mine and takes a few minutes before I can move speak or even breath correctly.πŸ˜”

I know you're answer is probably going to be of course you did and your sick of hearing it. Sorry lass if you have. But the YouTube videos of Jason Stephenson or relaxation vacation or healing comfort guided imagery are a wonderful help. Maybe when your having one someone could play one for you loud and you could if you are unlike me if your in your sences to what's going on around you, it may end the Seizure's quicker and you may have less?.

When I was a child and my older sister use to take Epilepsy Seizure's and I mean bad epilepsy turns, I use to sit next to her while she was on the floorshe taking a turn and I would cushion her head even with just my jumper or what ever be around and I would call her name softly but out loud and hold her spasming hand close to my chest and tell her ," it's okay big sis little sis has you so come round you don't want to put a hole in mammys floor, or come on sis come out of it your friends are waiting to go to the pub with you" 9 times out ten that one would bring her out of it πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ™ŠπŸ™ŠπŸ™ŠπŸ€­πŸ€—

She had her epilepsy through a accident and my brother too the same way. Well his was through fighting, he wasn't a very nice man, 😑 but how an ever I use to just put something under his head too and stand back to let him trash out his ones because if he was stopped he would turn extremely violent while still coming out the attack. But I use to just call him by his name tell him where he was what's happening him and he needs to come out if it before he does serious damage to himself. Then he would . So I took these lessons with me through my adulthood and used them in my holistic health coaching and therapy services on clients or for them to use on their love ones and it helped big time and I would suggest like I have done here to you to use YouTube when it came available.

I do so hope that this is of help to you and it gets you out there enjoying life and been ahead your condition and not controling you Lou.

But please remember lass your a true Life survivor your here on earth your helping others with your advice and support and most of all your experience that's a true warrior girl he proud of you I'm proud of you and I'm sure I speak for a lot of people here too lass πŸ€—πŸ€—πŸ™πŸ˜‡πŸ‘Ό

Be well keep strong πŸ€—πŸ™ and keep rising up living your life πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

Louyse
LouyseFND Hope UK

Thanks for that. I've not heard of the video so I will look it up. Sometimes if I have any advance warning (which is literally a couple of minutes at the most) I try to stick headphones on and blast Bruce Springsteen (I am a huge fan).

Yep we have just got to keep fighting and pushing for research and eventually a cure.

Cheers

Lou

Keepstrong
Keepstrong in reply to Louyse

Ahhhh lass after my own heart you can't beet tracks of Bruce Springsteen and Phil Collins too πŸ€—πŸ˜‚πŸ€£ give the YouTube links a shot just type in the names I gave you or just emergency panic attacks guided meditation this will help to. πŸ€— Be well Dear surviving warrior and keep strong πŸ€—πŸ™πŸ˜‡ CE πŸ€—

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