I have no interest in going to CBT. I did several years of therapy, initially required by my pain doctor. He required all of his new patients to see a therapist to help them deal with the chronic pain present in their lives. The therapist was a part of his practice. I had some childhood traumas I had partially worked through, so ended up seeing this therapist once a month for about 3 years. Just before I started having my full body paralysis episodes, she discharged me because I felt like I didn't have anything to talk to her about and we were struggling to find things to discuss at each appointment. I have gone back 2 other times for a few appointments each time to help me with the anxiety I was having because of the full body paralysis. Each time though, she wanted to start talking about the stuff we had already talked about. I just don't think rehashing the same thing over and over again is going to put an end to my FND, so why do it just because I have this diagnosis and it is what the website says that is what I am suppose to do. She knows nothing about FND and hasn't taken any steps to learn anything about it even though I have gone back 1 time since my diagnosis.
So, I want to work on things on my own. I want to try to retrain my brain by myself. My PT already has me keeping a daily journal of everything I do and how I feel to see if we can identify what triggers these episodes. She is researching the disorder extensively and is planning on calling a PT in Colorado I found on FNDHope who is an FND expert. I really think she is my best bet in having any kind of recovery from this disorder.
The book has some good reviews, but I wanted to see if anyone here had used it. It isn't a cheap book.
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poppymom23
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I see you are doing the journal...I found this the best therapy ever as it allowed me to reward myself for the good days and by reward myself am talking about a pat on the back. It also allowed me to look at the bad days for example....I got really quite depressed at one point some years ago and long story short went to the doctors who suggested antidepressants...now to be clear am not down on antidepressants in any way whatsoever but they were not for me and seemed ridiculous at the time so...I left the surgery in somewhat of a temper at myself so not one to take my anger out on...I went to the local supermarket I looked along the shelf tickets of the hoover section and I chose the lightest weight hoover I could find which just happened to be the cheapest thankfully and I bought it...took it home and did my hoovering walking on air...I was able to identify that my depression was coming from losing my independence is the point and bringing that up to date...I changed my floors to laminate and use a floor duster with a spray bottle of cleaner made up in the same way as you would do a bucket and I bought a micro cloth mop...housework done in a fraction of the time and the floor dusters and cloths just go in the washing machine when done...heavy food shopping is done online...garden was turned over from grass to stones with pots of flowers and more recently bit by bit plants that dont need any work...but the plants are in a pot that sits in a decorative pot and that means that I can move the pots around...I made a fairy garden for my grandkids and so the list goes on...and the point is this...if you took back the years...,10yrs ago...20 yrs ago or in some events 2 yrs ago could you still do what you you want to do now?...would you get upset if this was an age thing or would you feel more accepting that the body changes over time and we have to change with it....this is just my thought for the day and I leave that with you...for me I would lose the anger/upset/however this is making you feel and get to know the new you and become as smart in the new you as you were in the old you...God Bless...xxx
I haven't bought it yet, just wondering if anyone here has used it. It looks like you have gotten positive results from it, so I am ordering it on Amazon.
I found out yesterday when I was at PT that one of the other PTs that works with mine also does CBT and has experience with FND. I wasn't planning on doing any CBT because I have had a bunch and already dealt with past childhood trauma, but this therapist has an understanding of FND and how to use CBT to retrain the brain. She is also familiar with using PT for treating FND and will help my PT with my therapy. My PT is neuro certified, but until I was diagnosed, had never heard of FND.
Hi, I'm from the uk and have many FND symptoms as well as Fibromyalgia. The professional medical teams here are thin on the ground when it comes to this condition, so when this book was mentioned on our uk FND friends website, I sent off for it. It's CBT. It explains unhelpful/helpful behaviours, examples using storylines, and different tool boxes, that you can dip in and out of, to help you with your particular symptoms. Cut to the chase, I don't get on with cbt and I have tried, however, that doesn't say that you won't. We all know that there is no quick fix with FND. Repetition, pace yourself, give yourself credit for achievements, however small, and try and stay positive. (Very difficult sometimes) Sorry I'm not much help, just go for it, what have you got to lose.
Do you know what triggers your paralysis episodes? When do they mostly occur? I have full body paralysis episodes too. I was also told it was functional to start with but have now found out I have a disease called Periodic Paralysis. It’s related to potassium fluctuations. My potassium levels are always in the normal range but the fault is in how my muscles react to the fluctuations. And it’s not a disease that will show up on a MRI so it’s hard to diagnose.
Most people have symptoms when they are younger but some don’t show up till later in life.
Just something to think about if CBT isn’t helping....
Also, the literature says you need a nerve conduction study but doesn't say what the diagnostic results are. My nerve conduction study is normal. My potassium levels are usually at the low end of normal in the ER. FYI, I have been on potassium supplements due to also being on a diuretic that depletes potassium. I know when I 1st started having single limb paralysis, they were also having trouble getting my potassium levels in the normal range.
That is very interesting about your potassium. Mine is usually 3.8 or 3.6 when I have full body paralysis. My normal is 4.7. Nerve conduction tests will be normal. There is no interference in the messages getting from your brain to the muscle.
Genetic testing is the gold standard for diagnosis but not all genes are known so it comes down to finding a knowledgeable specialist and also EMG testing called long exercise test (CMAP or McManus protocol).
A very informative website is hkpp.org which has an in depth brochure to go through which you can read through to see if this is a possibility. There are however other weird and wonderful diseases that cause fluctuating paralysis eg. Porphyria or kidney or electrolyte problems but they usually show up with abnormal blood tests.
Hello. Sorry for the late reply. I just found this website. I also get full body paralysis and my potassium drops from a normal of 4.2 to 3.0 during an attack, but the doctors here say that is not low enough to diagnose HPP. They insist I have conversion disorder. Can I ask where you were diagnosed?
We have not found a trigger at all. When your paralysis episodes come on, does your body become paralyzed all at once, or is it a gradual thing? How does it resolve? How did they diagnose the periodic paralysis? How do they treat it? Do you have any other symptoms with it, such as spasticity?
The only thing that is still keeping me questioning the diagnosis is I don't have the Hoover's sign and I have severe spasticity enough to require a baclofen pump.
I am very interested in hearing more about this. I have been having episodes of single limb paralysis for 10 years now occurring every 4-6 months. It just recently advanced to the full body paralysis.
It most often happens when I rest eg. I can wake up at night or if I’m having a snooze in the day in a paralysis episode or if I have been sitting for a long time, car trips, flights. Sometimes it will just affect my legs. Other times my whole body. Depends what the particular trigger is. And there are many of them 😕. Also if my potassium is low I get muscle spasms in my feet and calves. Treatment is usually Diamox or Keveyis. That has made a huge difference for me in reducing the frequency, length and severity of episodes. But I have an autoimmune condition too so things are a bit complex for me. As well as POTS. You will have to google all this. Lol.
Ask more questions if I have missed answering anything.
So far my paralysis episodes are pretty cyclical. They occur every 3 months, give or take a few weeks. They always start with my legs being paralyzed suddenly, but my hips are fine. Gradually, the paralysis starts working it's way up my body, with my hands being the last thing to become paralyzed. I have had swallowing problems on a few of the episodes and some mild breathing problems twice. I have never needed to be on a vent before though. After a few days of full body paralysis, I can start to move my fingers just a tiny big. Over the next few days, the paralysis gradually reascends back down my body. The last thing I lost is the 1st thing I get back. It takes several weeks to get movement back in my legs. Just before I have another paralysis episode, I am walking well, usually without assistive devices, around the house and using my wheelchair only for long shopping trips or when I am walking on very rough, uneven surfaces.
This will definitely be something I ask my neuro about. I can't find any details on what the expected test results should be, so I don't know if this fits me or not. I checked my potassium levels from all of my admissions. When I come into the ER, they are at the lowest level of normal, they are higher on the subsequent lab draw. Maybe I need to talk to my PCP about increasing my potassium dosage. I hate taking those giant pills.
Some neuros or doctors are willing to trial patients on Diamox. I noticed a massive difference within about a week to 10 days after starting it. It does cause tingling around the mouth as well in hands and feet but I put up with that rather than spend most days with varying degrees of weakness. Your paralysis attacks sound very similar to what I used to have. Please keep me posted on how things progress. I am very interested to know if anything helps you have better quality of life.
Diamox is not a cure but can be a great treatment. I still have some paralysis attacks but they usually only last 15minutes now rather than hours or days and are much less frequent and it doesn’t take as long to recover.
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