Any advice in how you deal with the emotional ups and downs of FND?
My wife deals with it in an incredibly strong way just as you all do but when she's low she really does go low and she bursts out crying which I think is the best way to deal with it because crying is a release valve and it's better to let it out and talk.
She always wishes for her old active lifestyle and I so wish I could give her that because I feel helpless sometimes.
How do you deal with that constant recurring question and have any of you come to terms with this disorder?
Do you think you ever come to terms with it and it's constant messing around with your body?
This place is like a family to me because my wife's family really are of no use and I know this site gives me reassurance because she feels so isolated with it and we've met some lovely people.
Thank you all.
Tony & Kim
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LEEJUNFAN
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Some days are better than others. Seems now every time I have a seizure I cry and can't stop it. I also cry when I try to do something and can't. I don't think you ever do come to terms with it you only learn to manage it.
I also seem to cry more when having a seizure or sometimes just before. I'm incredibly up and down I think. Some days I'm really positive and the counsellor has even tried to get me to think about the positives from being ill. I do see some in that I've slowed down and appreciate my family and what I have. Adapting to what I can do.
Other times like your wife I'm just so sad and want to do what I used to do and don't understand why I can't. I'm not sure what else we can do.
I try and write down 3 things I appreciate about that day every evening and focus on those and being thankful for whatever it is that day. I enjoy mindfulness and meditation too. Best wishes x
I'm just about to start mindfulness with my occupational therapist so hopefully that will help. After 10 weeks of constant seizures I had three weeks free afte getting my meds increased , unfortunately last Friday they started up again and yesterday I had my first fall. It's a long and bumpy road.
I meditate everyday until I get unwell then I'm always sleeping and have no brain energy where thinking takes up my brain space and tires me out , But I do listen to Reki music , ..
I used to love music it was my life! Haven't been able to watch tv or listen to music since August. It either makes me feel sick , angry or triggers a seizure.
I hate watching tv 📺 the news I get angry or I will cry 😭 or a little kitten so I try not to watch to much tv 📺 I mainly sleep 😴 lol such a waste of the day , then one day I'll wake up and it's like I'm fixed but to my real energetic wake me again that I can't understand to tell you still learning but very confusing
No amount of sleep makes me better. Seeing a neurologist in December having suffered this for almost a year being wrongly diagnosed by my GP . Private referral 295 pounds for 45 mins . I need answers as almost going insane
For me I only get down when I have a flare up I go for being a healthy active mother / beauty therapist loving life to a weight , left arm weakness , influmation of my spine , eyes and this time left leg , I get an errgular heart ❤️ beat and exyreamly low blood pressure . My rhumatic factor is high at time of flare up , my choestol spikes and I have low vitimin D , not to forget the worst symptom is fatigue it kills me that's what depress me ..
so I can't seem to get my head around how my brain or Center nervous system make this all happen . So many other things like shakes restless legs pins and needles , feeling out of my body or brain something I can't really exsplain it sounds crazy I know the whole bloody thing sounds crazy witch is why coming to terms with the diagnosis is so hard , my diagnosis was in Monday so very new to this and in middle of a flare up .
Your wife is very lucky to have you understand what she is going through , for people without this condition find it hard and think such as my family that I can turn it off (wtf) if I could don't they think I would . That makes it harder for me so I feel alone ATM but am glad I can reach out to other who understand what I'm we us are all going through .
Maybe there is something missing that the doctors are not picking up on I'm going to do what ever to fix myself . My GP had never heard of it now need to find one who know more about it .
May I take this opportunity to thank yourself and all the other people on this site who have so kindly replied to my questions - so grateful of you all.
My wife Kim's story?
Going back to 2012, we was both in the NEC Arena, Birmingham at a crafts fair and she became very hot and she had to sit down and then we went outside for some free air.
We came back in, walked around and I looked at her and knew something wasn't right as she looked not with it.
I asked her was she alright and her eyes looked unresponsive and then she collapsed in front of me.
The image still haunts me to this day and she was unresponsive for 3 minutes and me and an off duty GP waited for her to come around after putting her in a recovery position.
Not long after, her right leg was shaking constantly and we had to put her in a wheel chair and get her back to Manchester as we was on a day trip.
That night we took her to the Hospital via an Ambulance where she actually worked for 8 years and they wrote to her GP who eventually referred her to a Neurologist who came from Hope Hospital in Salford.
All due respect to him because he did many tests including a brain scan which came back normal but Kim had been in a wheelchair for more than six months since the collapse so I guess he wanted to do the full works.
We have been fortunate compared to some of the experiences we have sadly heard on this site..
She's had Physio from a Neurophysiotherapist who was lovely but her symptoms have been many and each day is different.
The Neurologist eventually diagnosed Kim with FND at 34 years of age and she was finished off on health grounds and a new life started for us both.
She has also been diagnosed with a throat disease called EOE ( Eosinophilic Oesophagitis ) which causes her problems swallowing.
Now bear in mind that when Kim collapsed she was under a lot of stress from work issues and had lost a stone in weight which was noticable on her usual muscular frame from her days of practicing Gymnastics when young.
The big question here is this.
Did that trigger her FND?
We will never know but my gut feeling is that it did Ronwyn as stress can be a trigger point for it's onset.
Like all of you brave individuals, it's a constant battle and life is a rollercoaster at the best of times and we don't plan as much we used to do but take one day at a time and I've fought tooth and nail to get her rehoused into a Bungalow because she has become so sensitive to noise but the housing rules won't do it as they are for over people who are 55 and even our local MP can't persuade them despite my 4 appeals.
I can only work part time now but Kim misses work and her independence so much and I've never felt as helpless because despite doing my best I know I'm limited to a great degree and seeing loved ones in pain is a nightmare to say the least.
Kim sometimes has dreams when she's her old self and then has to wake up to the reality of it all but she's incredibly strong and I'm so proud of all she's come through.
Sorry for the long post Ronwyn but we would like to thank you again and all you courageous people out there.
I pray that in our lifetime we see a cure for this disorder.
No prob for the long post for the long post I think we have long posts to exsplain what we go through , I can't say what triggered mine to begin with or why I flare up at the same time each year but I know it is getting worse or so I think it is lol 😂 I Handel stress realy well and was realy enjoying my course in beauty therapy this time around meditate every day . Thinking of looking into seeing a chiropractor and Chinese medicin can't hurt any more than the pain I'm always but it's also all good me saying this money is a big thing and all these things cost and not being able to work makes getting better even harder another stress I don't need 😇 Thankfully I have had a seziour cause I don't think my family would know what to do or me for that matter 🙄
Hi tony and Kim, I can't accept my condition, I can't accept I can't see my family, I can't accept I can't work, I think if I accept this illness I will give up, some days I'm angry 😡, some days I just cry on and off all day, some days just confused and struggling to think, nearly given up on sleeping as I know what I will face the next day, to watch one program on television I have to turn sound up really loud and concentrate then in the brakes get up and move around or will be unable to see rest of program, I only watch 1 a week, films set off seizures. Like you my partner struggling to help me knowing there is nothing he can do, if he strokes my back, shoulders, neck, head I get electric shocks that he can feel, sometimes spasms. I too wish for my life back, now wish for even a small part of my life, I've read on here some people think I should accept and try to move on (I don't know what I'm moving on with though) I don't want to give up, so I just keep fighting going in a never ending cycle of pain, emotions and loneliness, sadness etc. I can't give in. There will be nothing left. I understand how she feels from the bottom of my boots. BUT like you I am not on my own, I too found this website and it has saved my sanity. I AM ALONE NO MORE. Big hugs to you both, Lisa and Trevor. 🤗🤗🤗🤗🤗🤗🤗
I too feel like your wife - wishing for my old way of sporting, independent life. I was hospitalised on Friday and they've now added panic attacks on top of my FND. I also suffer from a mental health condition called Complex Post Traumatic Stress Disorder and while hospitalised the Consultant just triggered that and boy did I go low.
Sorry I don't think I can ever come to terms with my neurological condition now that they've added panic attacks.
Wish I could be more helpful but you're right I think that crying is a good release valve but with my Complex-PTSD it's not something I can do.
Hi Tony and Kim, That is a very good question, do you ever come to terms with this disorder. My end of the story, I came down with a cold almost 8 years ago. It was approximately the first week of Dec. 2008. I lost my voice, which was a bit odd for me. The only other time I can remember losing it was a few weeks before my wedding (no stress there.. ha ha) But my cold went away, but the voice issue stayed for weeks. I went to an ENT, and he said that I had re-programed myself to talk incorrectly, and I needed to see a speech therapist. Even with speech therapy, my voice continues to go in and out since then. The longest I have been problem free voice was (consecutively) is 6 months, but lost it again. The next Dec. after losing my voice I had stomach surgery to help the reflux I was experiencing as they thought that may be causing the voice problems. That intern caused problems with swallowing. I was not able to get anything down food or drink for about 2 weeks, after the first week and losing 10 pounds, I was sent to the hospital severely dehydrated and had to get an IV to re-hydrate me, and to have a feeding tube inserted for the next 2 weeks. I did find some medication that is normally meant for the heart, but it truly helped the swallowing. It is called Diltiazem. It worked wonders for me. I no longer have to take it. I still get small spasms here and there 7 years later, but NOTHING to what it was back then. Then about a year after that, I was advised to see a therapist for talk therapy, as they felt that some trauma I had experienced as a child may be the cause of it all. That therapist referred me to a psychiatrist who could prescribe me some medication. He gave me some Clonidine. I don't know if I had a reaction to it or what, but within the next few days after taking it, I was at work, just before lunch, and my hands were a little shaky, almost like my bloodsugar was a little low. So I went to grab some food and drink to see if it would help. My hands began to shake even more, and went into my arms. For the next 4 hours my arms were flailing about uncontrollably. I was sent to the hospital via ambulance because a few years prior I had heart issues and our nurse wasn't going to take any chances. After the 4 hours it stopped. Then a few months later I noticed a slight jerking in my head, which lasted for several months. Then the hands and arms jerking came back out of the blue, and lasted another 4 hours, then 2 weeks later it happened again, then a week, then a few days. Since then, I have had all sorts of crazy uncontrollable movements all throughout my body from head to toe. I have had to deal with a walker, crutches, wheelchair as well, but for the most part, thankfully I am able to make it around on my own. I do have non epileptic seizures, my voice has been messed up even more now, I not only fight with it being hoarse, but now it goes to where I have to search for words, they may come out here and there, or not at all. They can come out like I stutter. To me it sounds as though I am deaf. I have been through so many doctors, therapists and neurologists and they all don't have many answers for me.. just so many of us, the tests show that I am healthy, but to look at me, and see the twisting and turning, jerking, voice etc.. that my body goes through you can see everything isn't right. However.. I apologize for the long story,... I have meant to say.. Dont' give up, think of the positive not the negative. Think of things you can do, not what you can't. My biggest thing I do is remind myself that it could be worse. I could be completely paralyzed, or have a terminal disease, I am fortunate to have what I have, and I just have to work around it. I have to remind myself that I can't overdo things, I can't do things like I used to 8 years ago, which makes me sad, but I have found new things that have been my saving grace. I have always loved to draw pretty much all my life, but have never had time to work on it. Because of this I have excelled quite a bit in my technique and abilities. And I have found that it causes me to focus on it, and my movements slow almost all the way down. Which has been a great blessing. If you can, get a therapist that you can trust, that you feel comfortable with, talk to them. After 5 therapists I have found one that I love. She has been a great help in working through my trauma experience, and has tried all sorts of different techniques on me. I have even tried some energy work which seems a bit odd, but we are hoping it may help. Anyways, find things you like to do that you can, even if it is just listening to music or read or listen to books. try not to focus on the bad, because when you do, it just sucks you down. (been there, done that).. Its not fun, and it is not easy to get out of if you let it take over you. keep trying, and if you need to chat, I would love to email you.
I really feel for both Kim and Cheryl. This is not a nice disorder to get...at all!
You both have a lot of symptoms that I've had over the years. To me, it seems that there's a group of people with FND who have burned out, after living for too many years at a high energy level or being constantly on the go.
I went to my (new at the time) doctor and complained of throwing up while eating out at restaurants but never at home. I had been having non epileptic seizures for at least a decade or more at that time. He was also worried about my high blood pressure that wasn't coming down at all with normal BP medication.
So he announced that the swallowing issue that was making me throw up was a spasm at the base of my oesophagus, and he could fix that with Physiotens. When I asked him how it worked, he told me it calmed the Sympathetic Nervous System (SNS), and immediately we both had an ah ha moment, where I pointed to my eyes while he smiled and announced that it would also help with some of my other symptoms. We were both referring to me crying almost 24/7...which my psychiatrist had diagnosed as anxiety, NOT depression. It's controlled by an overactive Parasympathetic Nervous System, also part of the Autonomic Nervous System (ANS).
The SNS controls the Flight, Fight, Freeze mechanism, panic attacks etc, and when it's overwhelmed, then the adrenal system goes into overdrive, overwhelm and eventually overwhelm too.
The medication I was initially put onto was Physiotens, an Alpha Channel agonist (not related in any way to Beta Blockers). It's supposed to be taken once a day, but it only lasts in my body for exactly 6 hours, and by 6 1/2 hours I start to get serious withdrawal symptoms, much worse than the original symptoms...including massive blood pressure increase and racing heart, irritable nerves and non epileptic seizures. I eventually settled for 200mg, 5 times a day, roughly every 5 to 5.5 hours.
Unfortunately all the other doctors in the clinic, that I would see when my own doctor was not available, would try to reduce my dose back to the recommended maximum of 3 tablets a day...totally unacceptable to my body, so my doctor replaced 2 of the 5 doses with 50 mcg Clonidine. He still has to ring Canberra (Australia) to get special permission for me to take 3 tablets a day of Physiotens (Moxonidine - there's a good chart at the bottom of the Wikipedia page on Moxonidine, showing a whole variety of medications for different variations of the the 6 adrenaline hormones being over and/or underactive).
I call them my miracle drugs because they calmed my body down, they stopped the crying, the adrenaline rushes 24/7, the constant noise and tension in my head and body, the panic attacks and the racing heart so now I can live a more or less normal life, as long as I keep my stress levels low.
I still get seizures occasionally, from both physical and/or emotional triggers, but they are now possibly 1 or 2 a month, instead of most days.
Hi Tony and Kim, its been a while since we chatted. Emotions.. that's a fun one. Yes, keep crying, get out those feelings of loss. Morn for what you had, but also try to come to terms with it as well. Remember to be grateful for what you can do vs what you can't do. Be grateful for the good times, and fight like crazy to get through the bad. I am so sorry we have to go through this, but we just have to keep fighting. Do you have a good therapist that you can talk to? Trying to remember. If you can find a good one that you feel comfortable with and open up to, I suggest it. Being able to talk out the feelings you have vs bottling them up inside is so helpful. You can't keep it in, or stuff it in a closet like it doesn't exist. I think that is some of what got me here. I stuffed and stuffed, till the closet door blew open and everything came crashing out so to speak. I invision the looney tunes cartoons where they have the closet so stuffed full of things that the door is bulging till it explodes. That will happen with your emotions if you can't get them out and express them. You NEED to open up and talk if you can. Talk about how you feel, talk about what you have lost, but also remember that you gain things with this too. Yes, I am amazing myself on this as well. I have learned more patience at times. Not all the time, but some times. I am learning to be more grateful for good days, and to not be so hard on myself. I have to be good to myself. To appreciate what I can do. To laugh, to cry and some days to just be. I can't get upset with myself If I can't do things one day, because maybe that is what my body needed that day. But keep fighting!
Dear Cheryl, I keep reading on here about talking to a therapist, what is a therapist and how do you get one, do you have to pay for one, do you have to go to them, so many questions sorry 😐
Hello Lisa-anne, I would love to field that question for you. A therapist is very much like a psychiatrist, but they are not able to prescribe medication. Either person would be great for you to see in dealing with emotions. Basically it is talk therapy. You are able to get out and find things in your life that you didn't really even know existed because it was buried deep in inside you. I know the doctors say that it is all psychological, which I agree to some extent, but not everything. So this is where therapy does help. It helps get to the root of things that may have happened in your past that you don't realize are bothering you.
I know it sounds crazy, but these things can stem back as far as birth. If your mother had a hard labor, or if there were complications during birth, it can actually effect you in your life now. Why it happens so much later I can't answer. Ok. lets put it this way. I read this once, and it made a lot of sense. Basically your brain is like a filing cabinet. It stores all the good and bad things that happen in your life in files within that cabinet, or even computer. When that cabinet or computer get full, (even a hard drive gets full).. it has to purge some of that information. So the things that are stored in your subconscious start to bubble up. It can bring up good memories, and bad memories that you don't remember even happening. These things especially the bad can be stored away and they can cause the problems that we are having, if not resolved or worked through. You have to clean things out, process them, work through them and accept the bad things to be able to move on.
Many people who have had past trauma in their lives, which can come from so many things like a friend, or family member being mean you, some type of accident to abuse etc.. Your body can take that information, and if it is too hard for you to comprehend at the time, will store these things away until it feels it is time and you are more capable of dealing with it. Basically blocking it out to help protect you. This is your brains way of cleaning out those old files that are now ready to be resolved. Unfortunately these types of things can bubble up to the surface, and cause these disabilities. It sounds so crazy, but the more I thought about it, and the more I worked on it in therapy, it made sense.
This is where I don't feel it is all psychological. I have been working on these types of things for years. I have worked through a lot of crap, and am still having issues with FND. I can't help but think that there are more things out there such as a virus that I had when this all started for me over 8 years ago, that may have settled in my brain and caused issues. My Neurologist agrees with me as well.
Ok, back to your question. A therapist/psychiatrist/psychologist is someone that your GP can recommend to you. However, I want to advise you that that one person may not be the one for you. Don't stop searching until it feels good. I have been through about 6 different people until I met my therapist whom I love to pieces, and really admire. We really clicked the first day I met her. The others, uhg.. I did not care for at all. One would not communicate with me much at all, another was cookoo herself etc.. lets put it this way, it created more anxiety just to have to go and see them. This one I am currently seeing, I look forward to seeing her.
Yes you do have to pay to see them. I can't remember if you said where you live, I am in Utah in the US, and my insurance helps me with the payments. However at lease here in Utah, a therapist can cost up to $100.00 an hour. So it can be costly which is where insurance helps if you have it.
Oh, if there is no trauma in your past, they can also help work our your feelings toward this disability, and help you to work through them.
I recommend finding a therapist that can do EMDR Eye Movement Desensitization and Reprocessing. I myself cannot do the eye movement part as it makes me dizzy and gives me a headache, but the therapist can do tapping or have little mechanical tappers that can do the job too. Look that one up.
I found my therapist via a friend/online. search for therapists online and make sure you put in things like the symptoms you are having such as dystonia, myoclonic jerks, voice problems EMDR, CBT or Cognitive Behavioral Therapy what ever it takes to get to the right people. I myself did a lot of searching till I found the right one.
Sorry this is so long, but I have a lot to say about them. I would be happy to chat off line if you would like to. cgarff1@gmail.com. I do recommend it if you can. It has helped me a lot to have that sounding board. One to talk out these problems that come up, or to get out the frustrations that this disorder causes. The therapist truly has to be a caring one to really help with this, and needs to believe in you and what your going through. If they just sit there and expect you to come up with a topic each day, move on. They need to interact with you. Help you to deal with issues. Try new things. I myself have tried so many things that I have never heard of, and have been able to rule out so many things as well. It has been very helpful.
I hope this helps not only you, but others going through this frustrating, pain in the rear disorder.
Thank you for your lovely reply and help, I had a suspicion I would have too pay but am glad you have confirmed this, I live in England and have no insurance. The NHS won't help me until I go back to London hospital, we have tried mental health charities, and others my new dr sent to me but they have all responded the same as in they are not equipped to help me as they don't have the knowledge or the resources. I am saving up for a set of Bose headphones at the moment as people on here have said they really work with all the noise. My disability money never got sorted out until last December so we are trying to pay off some debts too. Thank you for your lovely reply. Lisa. X
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FND seizures
