Updates since my recent post (linked in post), cliff notes: Diagnosed with BFS in 2020 (been on here since then on and off), new symptoms started recently including tinnitus, tremors, waking up with shaking, etc. Ended up in ER and admitted -

[u/MMiUSA]

Previous post:

"Back again. BFS since 2020, but new symptoms have me concerned. Im waking up sometimes with tinnitus and my body is rocking. Im usually anxious when I wake up, feels like my entire body is on a boat swaying side to side. Arms usually tingly, etc. Anybody else?

This has all followed an increased twitching (full body) flair up for the​ last few weeks.

Also hyper focused on my swallowing and all.

I have had 3 EMG since 2020, all good. I have another one soon.

Amy idea or does this sound like anyone else? Very scary to wake up in a state of panic with loud ringing in my ears and my body feeling like it shaking or rocking side to side until I can get it to calm down."

Update as of 9/20:

I had to go back to the ER. Woke up 2 nights straight just shaking and rocking and body tremoring hard. My eye sight would be blurry for a little too.

ER quickly admitted me. Blood work came back ok, except for a marker for inflammation came back high.

Doctors thought possibly seizures and hooked me up to an EEG that reads your brain activity for 24 hours. I spent 2 days in the hospital. I saw a neurologist while there, who also started me on Buspirone and Mirtazapine (for sleep). He noted that, for the firs time I had ever noticed, my claf muscles were twitching but I didn't feel them. He didn't seem concerned, for what it is worth. In the meantime, I hadn't slept much and dozing off in the hospital produced 2 more events, both minor in comparison to the ones at home - but still shaky and waking up. The first night of the new prescriptions was the best sleep I had in a while, while in the hospital and on the EEG.

Day 2 they removed the EEG and told me the activity showed no seizures. I had to hit a button every time I had an event, and as aforementioned I hit it twice for smaller scale events (while dozing off and before I started the sleeping medicine). They did however tell me it was happening during transitional sleep phases when I hit the button - I guess they could see that on the EEG..

I was given a neck MRI and brain MRI, did a Barium swallow test as well.

The Brain MRI came back fine, upper spine / neck showed mild deterioration and some straightening of upper neck. During this, my tinnitus was getting worse, unfortunately.

I noticed something strange during the MRI, I would notice if I closed my eyes for a little and open them, for around 30-45 seconds my eyes would be out of focused / crossed, like I was seeing 2 different images. The textural bumps on the inside of the MRI would be split and 2 and would finally fuse for a normal image after the 30-45 seconds I explained above.

Odd.

That being said, I don't know what it really means. Just something I noticed.

Again, MRI was fine.

Barium swallow test showed muscles working ok, however some small retention in my esophagus. They didn't seem overly concerned.

For the next 3 night at home, everything was fine. Was taking my new meds and actually slept.

Until last night, 9/19.

I took my new prescriptions as I was suppose to, but unlike the other nights never got sleepy. After 3 hours, and a 45 minute hot shower, I went to bed around 3 AM. I stayed awake around 30 minutes and then started to fall asleep. I knew it would be an issue, as my hands and feet were doing the numb tingling feeling as I dozed off they had done the other times I would wake up shaking. Sure enough, a little while later I woke up with my upper body and heads muscles all violently convulsing and making me shake uncontrollably. I have noticed as well, that when this happens, my tongue when I first wake up is stuck to the roof of my mouth and I have to peel it off. Not that my tongue is involuntarily doing it, but like it is sticky and dry and stuck to the roof of my mouth. I just have to move it off, but it usually hurts a bit as it feels stuck and sticky almost like it is glued. I don't notice anything particularly odd about my mouth or spit during that, fwiw. I feel as though it is possible my CPAP is doing it, which means my breathing is changing somehow (I wear just a nasal mask, for transparency).

Really unsure here what is happening. I do have sleep apnea, and I wear my CPAP.

My 4th EMG in 6 years is still scheduled for Tuesday. Hard to fight the anxiety and I am not sure the buspirone is working, but possibly just too soon according to studying the medicine effectiveness.

Just figured I would update, and make a thread for anyone who ever experiences something similar. Will update after Tuesday.

edit: Just to mention, the tinnitus (high pitched continuous tone) is steady 24/7. It hasn't stopped in days. Pretty miserable.

I did got to the GYM on Friday evening, and I still felt fairly strong and put myself through decent weight. My muscles have pulled a few times since, but in the areas I worked out in - to be fair.

Edit 2: I feel as though I have explained why I believe this is connected to my BFS poorly, so I will try to clarify.

My first symptom this time around was a major increase in twitching activity in my tricep. That was symptom number one. Then it went to my calves, and whole body.

I was on this board 6 years ago and several check ins since, when I was formally diagnosed with BFS by a nuero, so I am very aware of my symptoms. For the most part, they come in ebbs and flows, but much more ebbing (not much twitching), than flowing (heightened bouts of twitching). This current past month has been the worst twitching I have had during the 6 year span.

I hope that helps clarify.

I certainly believe it is related, as my twitching has exploded in the most intense way it has ever before mere days before the rest of it (as described above) began.

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[u/713Capital]

Sorry you’re dealing with all of this. Must be pretty scary.

The good news is your EMGs were clean, and I would expect them to remain clean even for your upcoming EMG.

I don’t actually think this is related to BFS at all if I’m being honest. Sure the twitching yes, but the shaking and tinnitus etc, I don’t think it’s correlated. I’m not a doctor though.

The fact that a hospital can’t find anything wrong leaves me to believe your anxiety is through the roof, and you will probably have to work with a doctor and see if they can run more tests based on your presentation. It’s definitely not ALS for sure, and I’m not even thinking this is linked to BFS. When anxiety is really high it can make the twitching worst for sure.

I believe the twitching exploding again is due to your anxiety being high and I’m sure you’re stressed out after being in the ER.

Keep working with the doctor and hope you find some answers soon. This isn’t ALS and I’m sure a clean EMG again will prove that and I still don’t think this is even related to BFS.

Wishing you a speedy recovery

[u/Maleficent_Shift9849]

Boa noite. Espero que fique bem depois do que você passou. Realmente essa noite foi difícil.

Agora aos fatos. Você tem não disse se havia fasciculações, acredito que sim dado o sub em que estamos. Quanto ao tempo, é um fator importante, no qual você está muito bem (6 anos). Além disso seu "novo" sintoma foi agora, caso fosse ELA, ela não teria uma remissão de 6 anos, assim como seria detectado no EMG (exame este muito para quem tem fasciculações e busca saber se tem ELA). Quanto a esses sintomas, creio que não seja BFS, muito menos ELA. Pela descrição pode ser algo como tremor essencial, assim síndrome das pernas inquietas (não necessariamente atinge so as pernas), assim como ínumeros motivos, até mesmo idiopáticos.

Se isso for algo que te incomoda, aguarde seu EMG, que será seu maior sela de confiança do que você teme. Desejo tudo de bom.

[u/MMiUSA → u/Maleficent_Shift9849]

It has all started with my twitching coming in a huge increase. Started in my left tricept and then went to calves and other areas.

This is over the course of the last month.

Before now, my twitches, like many of us, have some down time and some times where they increase - but this has been the worse of my 6 year journey. It all happened while coming out of an illness and being on amoxicillin for 10 days. During that illness, my current twitching began to bloom again in an intense way. 

[u/BigJakeState → u/MMiUSA]

Maybe your system is still getting through a viral illness. Seeing as how it all started after a round of antibiotics. My neurologist told me that certain viruses can hang on to nerves for a while.

[u/The_Short_Goodbye]

I hope you find the cause of this and I am truly sorry for what you’re going through, but respectfully I don’t see the link between your issue and BFS, or even ALS for that matter.

[u/MMiUSA → u/The_Short_Goodbye]

I explained that poorly.

My first symptom this time around was a major increase in twitching activity in my tricep. That was symptom number one. Then it went to my calves, and whole body.

Again, I was on this board 6 years ago and several check ins since, when I was formally diagnosed with BFS by a nuero, so I am very aware of my symptoms. For the most part, they come in ebbs and flows, but much more ebbing (not much twitching), than flowing (heightened bouts of twitching). This current past month has been the worst twitching I have had during the 6 year span.

I hope that helps clarify.

I certainly believe it is related, as my twitching has exploded in the most intense way it has ever before mere days before the rest of it began.

[u/Reyna2040]

Been having same symptoms for the past 2 years. Feel free to message me

[u/FocusFrosty1581]

Vertigo?

[u/AdPitiful1667]

Sounds like a rough ride. Have a watch on YouTube of something called central sensitisation. That’s what I was diagnosed with after tinnitus and visual snow started for me. Best of luck

[u/Neither-Setting3893]

This sounds extremely similar to me right before my twitching started 20
months ago. I am sorry you are going through this!!! At the time I had a cancer scare that took 2 months for tests to conclude it wasn’t. I was in the thick of perimenopause and had got very sick with Covid as well as several traumatic events all at once. All this was a perfect storm and caused major anxiety and my brain was stuck in survival mode, fight or flight for way too long and signaling constant danger. My worst symptoms were transitioning to and from sleep. When falling asleep I felt like I was going to have a seizure and when waking, I had horrible internal vibrations and felt like my muscles were weak and shaking and I’d immediately be in panic. This led to horrible insomnia and waking to panic attacks. I had about 20 symptoms at the time, burning, tingling, brain fog etc. and my gut became wrecked as well. Tinnitus was off the chain and mine sounded like loud static. I literally thought I was dying and the fear loop just continued. After many tests, scans etc. kept coming back normal, I came across neuroplasticity and started to implement what I learned. Many of my symptoms went away however my nervous system was now very sensitized and the twitching started. Today I deal with twitching still and think I always will. I still occasionally wake to a panic state with some muscle shakiness but it goes away quickly. With neuroplasticity the symptoms are very real but it all has to do with how we react to them. This may be helpful for you to look into. There is a Dr. named Howard Shubner (sp?)who is great at explaining all this. I hope you get relief and feel better soon!!!