View Full Version : Worried no one with believe me. Bulbar ALS fears.
I was in my car last night and I started to whistle along to a songs. I noticed that I couldn’t whistle as well as I normally do. I might be imagining it because I am now focusing on it. My stupid HA brain jumped to ALS and made me panic. Thing is, I can still whistle, it just doesn’t seem as strong. Am I being rediculous?
Yes, but I know that doesn't help.
I once got panicky because my flatulence sounded wrong. This was also ridiculous.
Yeah I feel really dumb, I don't want to fall down the rabbit hole again because I did a few years ago. I mean who gets nervous about their whistle not sounding great :doh:
An anxious person.
Don't beat yourself up, okay? We all slip up from time to time. If you can, find something fun to distract yourself with.
I too have tested my whistling skills out recently and panicked when hardly a squeek came out...but it's like anything if you don't do It alot it can become weaker..its normal you're good x
I don't believe that it's a problem for that thought like that to initially come up. The key is not to give it power and ruminate on it. It's only a thought and let it go and move on.
I actually get these quick thoughts all the time like if I drop something or fumble through a word even though neurological diseases have really not ever been a concern of mine. Perhaps because it isn't a fear those thoughts are very easy for me to let pass and quickly move on and stop caring.
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Around 2 years ago I had my first big health anxiety scare over ALS due to perceived weakness and muscle twitching. After numerous trips to the doctors, neurologists and therapists I finally got my life back in order after I realized that it was all caused by anxiety. Fast forward to just before Christmas and health anxiety struck again with a lymph node worry (all fine), stomach cancer worry (also all fine) and now I'm stressing about ALS once again. I was in my car the other day and I tried to whistle along to a song and it didn't come out as strongly as normal, my brain went into full panic mode about bulbar onset als. (I know it sound ridiculous). Since then I've been super paranoid about the way I am talking and the way I swallow food. I'm finding it hard to swallow food but I'm hoping it is just an anxiety symptom that is causing my throat to close up. I get myself so worked up that I can't sleep more than about 3-4 hours a night and I throw up nearly every morning because of how worked up I have made myself.
The stupid thing is, currently I can still whistle, my voice isn't slurred and I think my swallowing is normal (with the exception of the anxiety). I'm probably being ridiculous but I can't help it and all my family and friends are getting fed up with my worries all the time. I've gone back on Citalopram 20mg and have signed up for more CBT so we'll see how it goes. I just hate health anxiety so much and I needed a bit of a rant and some reassurance.
Also I forgot to add that during the night I was wiggling my toes and I noticed that I can wiggle them a lot quicker on my right foot and just generally have better control of my toes on that foot. So of course I freaked out. Does anyone else have this? Is it because my right foot is my dominant foot, I'm trying not to freak out right now.
Yes, it's because it's your dominant foot.
I used to play the organ, and my left (nondominant) hand was always much weaker and harder to control than the right.
Have a read of FMP's excellent thread on why you don't have ALS, maybe?
Bless you and hang in there. Everything you have described I have had (except for the whistling because I’ve never been able to do that). I have previously worried about bulbar onset and then suddenly my swallowing feels all laboured and I find certain words hard to say. More recently I’ve been worrying about spinal onset due to twitching in the arches of my feet. And in the course of that worry I have noticed that my left foot cannot tap nearly as fast as my right. Having bothered my family and friends about this finding (god help them) I have realised this is normal. You don’t have ALS
---------- Post added at 12:30 ---------- Previous post was at 12:28 ----------
Yes, it's because it's your dominant foot.
I used to play the organ, and my left (nondominant) hand was always much weaker and harder to control than the right.
Have a read of FMP's excellent thread on why you don't have ALS, maybe?
You used to play the organ Iris? That is a fun fact! In church?
Electronic organ, Jojo - jazz and Latin stuff :)
Electronic organ, Jojo - jazz and Latin stuff :)
I wish I was as cool as you :shades:
You only say this because you haven't met me :roflmao:
Thanks guys, I do feel like I'm being ridiculous but I just can't help it. I just can't seem to get my mind off it :(
At least you know your thoughts are unreasonable; this is important. I know it's tough, but when you feel them bubbling up, try to remind yourself of that.
The other day I posted about the fact that my whistle was by as strong as normal and that made me panic about bulbar onset als. Well this morning I was feeling pretty good and trying to get over it when I noticed I couldn’t do something anymore. I went to get my dogs attention by making that kissing sound and...nothing came out. I was unable to make the sound with my mouth. I still can’t do it. Why have I suddenly lost the ability to do it?! I’m absolutely terrified right now. I spoke to my mum, dad and boyfriend about it and they all got angry saying I was being rediculous. My boyfriend seems to think that it’s becsuse I’m anxious and I’ve had a dry mouth. But I’ve never had this problem before. Am I dying I’m so scared?
You're really, really not dying, you're just in a panic.
Meriland30
17-01-19, 09:51
Bulbs ALS doesn't effect your lips like that. It effects your tongue, soft palate, and throat for the most part. If you were having bulbar ALS of the lips, your lips would have severe fasciculations and would not be able to purse your lips/move them at all.
So update, I went to visit my gp and I explained my als fears. He said he didn’t think there was anything wrong with me. I explained that I couldn’t do certain things with my mouth and that sounds were coming out weird. He checked my facial nerves and said everything was fine. I’m still nervous, something seems off. Should I go see a neurologist?
No, you should trust your GP.
The other day I posted about the fact that my whistle was by as strong as normal and that made me panic about bulbar onset als. Well this morning I was feeling pretty good and trying to get over it when I noticed I couldn’t do something anymore. I went to get my dogs attention by making that kissing sound and...nothing came out. I was unable to make the sound with my mouth. I still can’t do it. Why have I suddenly lost the ability to do it?! I’m absolutely terrified right now. I spoke to my mum, dad and boyfriend about it and they all got angry saying I was being rediculous. My boyfriend seems to think that it’s becsuse I’m anxious and I’ve had a dry mouth. But I’ve never had this problem before. Am I dying I’m so scared?You've been constantly thinking about, and looking for, "things I can't do". I'm sure to a point of obsessing.
You know what that means? The brain is going to make things you can't do! It's like ...ahem...to be polite I'll call it..."male performance anxiety". There's a point where a man can get so nervous, or anxious, about "doing it right" or what she thinks or lasting long enough or whatever that "it" literally won't work.
There's no disease there in that situation. It's all upstairs. The same is true in this situation.
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I’ve not been looking for things I can do. They are just things I do daily that I woke up and suddenly realised I can’t do anymore and that’s why it scares me so much. This is worrying me so much I’m barely eating, I can’t sleep properly it’s a nightmare. I just don’t have an explanation as to why I can’t do a thing with my mouth anymore other than ALS or something like that which has make my body fail to do it. Part of me says I’m being rediculous and then another part says that most people don’t make those noises so they wouldn’t know if it was their first sign of the disease.
There's a post on the HA board that clearly explains what might and might not happen with bulbar onset ALS. This was taken from an ALS board - it's an exceptionally rare disease that happens to be a magnet for HA sufferers.
I have never been this terrified. I am absolutely petrified of ALS bulbar onset. I’m 25 years old and I am having an absolute breakdown about this. Please tell me if you think anxiety could cause all of this, because I truly can’t believe it can.
So in the last week my ability to whistle, make a kissing sound and tut have almost completely gone. I was singing in the car this morning and I can’t hit the notes I used to be able to and I can’t sing as loud, it takes a lot of effort to sing and it just sounds off. I feel like when I talk it sounds like I am congested slightly, even my dad agreed with me when I said about it. I read on the ALS forums that bulbar onset can start like this sometimes, it sounds like you are congested before you being to slur. I am so terrified. I just can’t explain how anxiety would be able to do any of this. I have literally lost the ability to do things and I am so scared.
I’m going to see a neurologist on Tuesday and I am so scared that he is gonna find something wrong. I’m scared that I’m gonna wake up one morning slurring or one of my limbs has stared to stop working. I’m absolutely petfiied. I want this to be nothing but I just keep getting worse :(
I know anxiety can do some weird things, but this is just to much really isn’t it? Please give me some advice. I’m so scared this is the end for me.
Lots of people have been telling you for ages that it absolutely isn't, and that there's absolutely no chance you can have it.
Hopefully the neurologist will be able to convince you, but I don't think anything any of us can say will help any.
I just don’t understand how I could lose the ability to do things with my mouth, and how my voice could change and it not be something serious. How could anxiety do any of this? I’m so worried :(
It's because anxiety affects every part of your body. Back when I was at school and uni, I used to lose my voice completely before oral exams - I'd be literally dumbstruck.
So I stupidly visited the ALS forum this morning. Basically I wanted to read the recently diagnosed section to convince myself that my symptoms were nothing like what other people had. Oh my god did that backfire on me hardcore!
Literally the second thread I clicked on was a woman who had bulbar onset which started off very strangely, she lost the ability to sing. I don’t know how obvious this was, like if she literally couldn’t do it anymore or it just wasn’t coming out the same. She saw a neurologist who didn’t think I was anything and nothing too worrying showed up on the EMG. Then she began to slur her speech which is when they realised she had als.
I’m so scared right now because I was having a hard time singing in the car yesterday and it wasn’t coming out right at all. I feel like this is it, this is exactly what I have right now. I wanna think that anxiety and tension is the reason I’m not singing properly but now I just feel like that was the evidence I need to know I have it :(
Niknakx
I've definitely commented on your posts before - you are evidently a very anxious person. You do NOT have ALS.
Stop going on to those forums. People, when they've been diagnosed with a serious illness, often talk about their symptoms in a way which makes them sound insignificant. This can be increased online, as you can't hear the persons tone.
When this lady said she lost the ability to sing, she most likely means she couldn't get it out at all. Not that she couldn't hit the notes.
You're congested, this is just a cold that's wreaking havoc on your throat. ALS is very rare as it is - bulbar onset is even more rare.
I doubt this post will be of any help to you - but hopefully the neurologist can do more.
STAY OFF THE ALS FORUMS (OR ANY ILLNESS-RELATED FORUM). YOU'LL NEVER FIND THE REASSURANCE YOU SEEK ON THEM
Niknakx
I've definitely commented on your posts before - you are evidently a very anxious person. You do NOT have ALS.
Stop going on to those forums. People, when they've been diagnosed with a serious illness, often talk about their symptoms in a way which makes them sound insignificant. This can be increased online, as you can't hear the persons tone.
When this lady said she lost the ability to sing, she most likely means she couldn't get it out at all. Not that she couldn't hit the notes.
You're congested, this is just a cold that's wreaking havoc on your throat. ALS is very rare as it is - bulbar onset is even more rare.
I doubt this post will be of any help to you - but hopefully the neurologist can do more.
STAY OFF THE ALS FORUMS (OR ANY ILLNESS-RELATED FORUM). YOU'LL NEVER FIND THE REASSURANCE YOU SEEK ON THEM
The thing that is concerning me is I don’t have a cold! I’m not congested because of a cold because I don’t have one, my dad just said I sounded a bit congested. He’s the only one that has said this, everyone else in my family says I am talking fine.
It’s not that I wasn’t hitting the notes, is just it didn’t sound right and it was laborious to do so. I know anxiety can make you tense but could it really affect your voice like that? I really hope the neurologist says it’s fine, because right now I have fallen off the deep end :(
I’d love to be able to post back on here in a months time and say everything was fine it was all in my mind, but I’m just doubting that right now :(
Anxiety can absolutely affect your voice, yes - it's a nightmare for me when I'm stressed as I start squeaking like a teenage boy or lose my voice entirely.
Most things I can chalk up to being anxious, but the symptoms came before I was anxious. This fear started about a week ago and it is ruining me. My family are at their wits end and think it’s all just in my head. I worry that it’s a case of the boy who cried wolf. I’ve had health anxiety for years and now no one will believe me.
Even when I’m calm my abilities don’t come back. I’m so scared that this is the start of als. I’m sorry if I sound like a broken record but I can’t talk to my family about my fears much because they are getting fed up. I just don’t know what to do anymore. My gut keeps telling me something is very very wrong :(
Ask yourself, though, how many times has your gut been wrong in the past?
Ask yourself, though, how many times has your gut been wrong in the past?
I know my gut was wrong when I worried about previous ALS, Lymphoma, Breast Cancer, Ovarian Cancer and Stomach cancer.
The thing is the other times I went to see specialists I kind of knew in the back of my mind that is would turn out to be nothing. This time however I am actually scared about visit the neurologist because an EMG might prove that there is something sinister going on. I just can’t drop this one. I’ve never had symptoms like this before.
I really do genuinely appreciate you taking the time to respond to my messages, anxiety can feel very lonely and you have no idea how nice it is to talk to someone and get my worries out in the open.
I'm talking to you because I've been there, and I'll doubtless be there again in a few days when I start worrying my period's gone on too long and I'm sure it's cancer ;)
The one time I was right about the cancer, though, it was absolutely unmistakable. When something's majorly wrong (or even minorly wrong, in my case) the body tends not to leave you much room for doubt.
So lets say you have this als...sooo you can not stop it you can not change it so now you belive you have it what do you need to panic about you have it so live do the things you want to do or tell youre self you would or should be doing.
This is the point i am at with my anxiety i have 1 issue on going that is itchy skin with spots i do not know what these are nor do i care tbh even if its worse case i just want the dam itch to go away so i can smile and get on with my life
I'm talking to you because I've been there, and I'll doubtless be there again in a few days when I start worrying my period's gone on too long and I'm sure it's cancer ;)
The one time I was right about the cancer, though, it was absolutely unmistakable. When something's majorly wrong (or even minorly wrong, in my case) the body tends not to leave you much room for doubt.
Oh my goodness, you’ve suffered from cancer? I’m so sorry, what type did you have?
You sound like me worrying about periods :roflmao: I’m so grateful I found this forum and all you people. People who don’t suffer from HA have no idea how distressing it can be.
Only basal cell carcinoma; it was pretty obvious, as it was right there on my face. I left it about 3 years before finally getting it dealt with.
Periods are my main trigger these days - if they don't fit into a very, very strict range of guidelines I tend to assume it's endometrial cancer.
Only basal cell carcinoma; it was pretty obvious, as it was right there on my face. I left it about 3 years before finally getting it dealt with.
Periods are my main trigger these days - if they don't fit into a very, very strict range of guidelines I tend to assume it's endometrial cancer.
So weird how health anxiety works because my period are never ever regular and last between 2-40 days. I’ve been to see doctors and they says it’s just the way my body works. Weirdly never been too worried about it haha!
It's bizarre, yes. Mine is normally about 30 days, this month it was 33 and I only barely held it together ;)
I’ve posted on here quite a lot recently regarding my crippling fear of bulbar onset ALS. Over the last week I have noticed that my voice doesn’t sound the same, or at least I don’t think it sounds the same because it is more nasally. I am also having difficulty when singing, it is very laboured and doesn’t sound right. It is hard to talk/sing loudly almost as if my body won’t allow it.
I am terrified it is early symptoms of bulbar onset als, and because I have suffered with health anxiety for years everyone is just assuming these symptoms are all in my head. Which I would love to believe but I am having an incredibly hard time believing it.
I am so worried that I have lost over a stone in weight and I am only getting around 3-4 hours sleep a night. I am basically a zombie at this point. I’m just so worried everyone thinks it is a case of the boy who cried wolf. I’m onl 25 years old and I am so terrified. I’ve tried talking to the people on the als forum who had VERY similar symptoms however they just banned me and told me I need to get help with my anxiety. I don’t know what to do anymore :(
For a start, posting on the ALS forums is really, really insensitive. I've spoken to you a bit and I know you're lovely, but one thing we as anxiety sufferers have to guard against is letting our own disease make us do things that hurt others, particularly when they have so much on their own plates.
That said, bulbar ALS is a staggeringly rare form of a very, very rare disease. I'd stake pretty much anything you care to name on you not having it. Since it's causing you this much distress you clearly need to get checked, but you also need a backup plan in place to help you manage the anxiety WHEN (not if) you're given the all-clear and the fear returns.
Wishing you all the very best.
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
Elen
So doctors have cleared you of ALS, and believed anxiety was the cause.
Anxiety forums have "cleared" you of ALS, and believe anxiety is the cause.
ALS forums and sufferers (and yes don't go to those boards, bad idea all the way around for you and for them) have also "cleared" of ALS and believe anxiety is the cause.
What else do you need before you decide to tackle the real problem?
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Okay so update! I went to the neurologist today and went over all my fears. While he couldn’t explain my symptoms he did say I was catastophising my symptoms and that he had literally never heard of someone’s symptom onset being anything like what I was saying. I explained my lips not making the same noise and that it’s harder for me to suck things now. I asked him again if he thought it was ALS and he said no and shook his head. He believes all of this is linked to my health anxiety. So he has given me the name of a private psychologist he regards very highly and has told me to see her.
As he couldn’t explain my symptoms I am still concerned as I believe this is still the first symptoms of ALS. He does specialise in neuromuscular deseases and didn’t seem concerned at all. Unfortunately my brain is still having a hard time believing it. I guess annoyingly only time will tell who ends up being right.
Niknak, he'll have seen many people with ALS, the guy will know what he's talking about. You need to tackle your anxiety, as it's way out of control.
Kingdawson
23-01-19, 07:27
I’ve posted on here quite a lot recently regarding my crippling fear of bulbar onset ALS. Over the last week I have noticed that my voice doesn’t sound the same, or at least I don’t think it sounds the same because it is more nasally. I am also having difficulty when singing, it is very laboured and doesn’t sound right. It is hard to talk/sing loudly almost as if my body won’t allow it.
I am terrified it is early symptoms of bulbar onset als, and because I have suffered with health anxiety for years everyone is just assuming these symptoms are all in my head. Which I would love to believe but I am having an incredibly hard time believing it.
I am so worried that I have lost over a stone in weight and I am only getting around 3-4 hours sleep a night. I am basically a zombie at this point. I’m just so worried everyone thinks it is a case of the boy who cried wolf. I’m onl 25 years old and I am so terrified. I’ve tried talking to the people on the als forum who had VERY similar symptoms however they just banned me and told me I need to get help with my anxiety. I don’t know what to do anymore :(
I know you're scared but doesn't even a tiny tiny tiny bit of you feel it's wrong to continuously post on a forum where the posters are suffering on a daily basis and will unfortunately pass away due to this terrible disease?
You're posting on an ALS forum so much that they've banned you. It's clear to all that your issue is anxiety and you've been told this continuously by different sources but it's not helping you overcome this so what more can be done?
Work on your anxiety.
I know you're scared but doesn't even a tiny tiny tiny bit of you feel it's wrong to continuously post on a forum where the posters are suffering on a daily basis and will unfortunately pass away due to this terrible disease?
You're posting on an ALS forum so much that they've banned you. It's clear to all that your issue is anxiety and you've been told this continuously by different sources but it's not helping you overcome this so what more can be done?
Work on your anxiety.
^^THAT!^^ 100X that! Add to that posting about this in the HA section of an anxiety website :whistles: To even have an inkling of doubt after what the doctor and others have said just shows the severity of your anxiety.
Positive thoughts
I just can’t help it. He couldn’t explain my symptoms and I can’t find any other answer to them other than a very early symptom of bulbar onset. I can’t think of a single other answer for why I can’t suck hard anymore with my mouth and why I can’t make sounds with my lips. It’s like the muscles just aren’t as strong anymore. Please has anyone got any idea what could be causing this if not ALS?
Okay so update! I went to the neurologist today and went over all my fears. While he couldn’t explain my symptoms he did say I was catastophising my symptoms and that he had literally never heard of someone’s symptom onset being anything like what I was saying..... He believes all of this is linked to my health anxiety. So he has given me the name of a private psychologist he regards very highly and has told me to see her.
As he couldn’t explain my symptoms...
Just stop right there. He absolutely did explain your symptoms. (highlighted in bold) Follow your doctor's orders and go see the psychologist.
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So I am literally still freaking out. I am upset because everyone from the doctors to my family say that my symptoms are in my head, but I know for a fact that some of them are not. It hurts me that everyone just thinks I'm crazy when I have legitimate fears :(
I'm struggling to find the energy to deal with this anymore, I am so miserable. I have no energy to socialize or do anything I enjoy anymore. The neurologist said he wouldn't give me an EMG because he said my symptoms were "functional". The fact that I was worried before means everyone is fobbing me off and not taking me seriously. I am having trouble swallowing things and I know that I can't suck in properly anymore. I've booked in to see the neurologist again next week. I want him to talk to me as if this is a problem rather than just making it a mental health problem. If I did manage to persuade him to give me an EMG and it came out clean is that enough reason to drop this?
This is the lowest I have ever felt. I have truly hit rock bottom :(
Have you contacted the psychologist you were recommended to see?
Have you contacted the psychologist you were recommended to see?
Yes I have, I have an appointment on Monday. I looked her up and she specializes in functional neurological disorder, which is basically people who have symptoms but no reason for it. I hate that everyone thinks it is in my head :(
No, anxiety symptoms are very, very real. Nobody's saying it's in your head. Anxiety can cause neurological symptoms, though, just like it can cause, say, diarrhoea or muscle aches.
So I am literally still freaking out. I am upset because everyone from the doctors to my family say that my symptoms are in my head, but I know for a fact that some of them are not. It hurts me that everyone just thinks I'm crazy when I have legitimate fears...
I want him to talk to me as if this is a problem rather than just making it a mental health problem.
You are the one who is labelling a mental health problem as not serious and/or not real. Not them/us. You have been examined, diagnosed, and been given a treatment plan. You are the one who needs to follow it. Monday should be a great day for you. Let us know how the appointment goes.
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livethelife
24-01-19, 19:29
I totally get it - I've been there. For it wasn't whistling but I have thought at times that my voice sounds weak and I start thinking about ALS. Two years ago I was convinced that my one lower leg was smaller than the other one due to ALS - my husband couldn't see the difference but I could! Finally he said let's measure them and I was petrified. They were exactly the same size. Anxiety can do crazy things. Also I think whistling can be affected by things like hydration or lack of it/dry mouth etc.
So weirdly enough, yesterday I had an ‘okay’ day. I blocked the ALS forum website on my phone and on my work PC so I couldn’t look anymore. I chatted with everyone at work which really brightened my mood. My brother than drove me home and we sang all the way back. My singing voice sounded fine, it was only when I went to shout or hit a high note that my voice gave out, but I’m hoping that was just anxiety.
I got home and realised I could make the ‘kissing’ sound with my mouth again, which made me feel so much better. My shouting all came back and overall I felt good.
Today has been a mixed bag I’m really paranoid about the way I’m talking, a couple of times today whilst talking my voice just gave out and nothing came out which made me panic. I’m curious because I keep trying to tell myself that if it was ALS my voice wouldn’t have got better throughout the day, do yiu agree?
---------- Post added at 18:16 ---------- Previous post was at 16:42 ----------
Oh, also I forgot to mention that my neurologists’ security emailed me and told me that he would be willing to offer me an EMG if I was still having worries, so next Thursday I’m getting an EMG. Fingers crossed, it goes well. I just hope I stop having voice issues.
That just adds more evidence that this is anxiety based. You took positive actions to address your fears, you were distracted from ruminating over them, and you had a better day. It wasn't a coincidence.
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So weirdly enough, yesterday I had an ‘okay’ day. I blocked the ALS forum website on my phone and on my work PC so I couldn’t look anymore. I chatted with everyone at work which really brightened my mood. My brother than drove me home and we sang all the way back. My singing voice sounded fine, it was only when I went to shout or hit a high note that my voice gave out, but I’m hoping that was just anxiety.
I got home and realised I could make the ‘kissing’ sound with my mouth again, which made me feel so much better. My shouting all came back and overall I felt good.
That is the absolute proof it's not ALS. It doesn't come and go. Once something fails, it's totally done, never to work again.
Happy to hear about the therapy! :yesyes: Best move you could make.
Positive thoughts
Hi guys, just wanted to do a little update. I've got my first appointment with a health anxiety therapist tonight. I've been doing okay the last few days, well better than last week at least mentally. I still can't make that kissing sound with my mouth properly and it is becoming harder and harder to speak. Not like I'm slurring or anything but generally it feels like my voice is straining just to talk. I can talk but it's like my voice just wants to give out most of the time.
I've been trying to remain calm about it the last few days, as calm as I can possibly be. I'm just frustrated because I'm trying to believe that this is anxiety based but I have been calmer than normal the last few days and I just seem to be getting worse. I still an't drop the doubt that it is ALS. I keep trying to tell myself how unlikely it is because of my age and other things, but I just don't understand why this is happening. I'll talk to my therapist about it, but it seems the more I try to convince myself that it is anxiety, the worse my symptoms seem to get :(
Why is it mornings are always so much harder when it comes to anxiety? I go to bed in a relatively good mood and it is all gone by the time I wake up.
I saw the health anxiety therapist last night and she was lovely and so understanding. She told me I was catastophising everything and that my brain is being completely irrational. I’m definitely going to continue seeing her because she definitely knew what she was talking about. I felt a lot better after my appointment and I went to an exercise class in the evening and overall felt pretty good.
Still have strange symptoms but I’m trying to ignore them. I keep coming back to the point that if it was something serious it wouldn’t randomly get better for a short time to then vanish again. So fingers crossed I can try and continue going the way I am going. I’ve got my EMG on Thursday so hopefully that can reassure me even further. Health anxiety sucks.
It does, but well done on seeing the therapist - she sounds really great.
Excellent news! You'll keep on learning more with more sessions. Recognizing catastrophic thinking patterns is huge.
As for morning anxiety, I think it's related to fear of what might happen, the whole day of unknown is ahead of you...at night you've already gotten through the day so are more relaxed. If i remember right, I think the famous (in our circles) Claire Weekes book had a whole chapter on that.
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Morning anxiety is very common. I've read that it may be because our bodies produce cortisol (stress hormone) when we wake up. Cortisol peaks when we wake up and slowly drops throughout the day. So, that's the most likely scientific explanation for why we're more anxious in the morning. I've also read that lower blood sugar can contribute to anxiety, and our blood sugar is also lowest in the morning. So, getting right out of bed, having something to eat, and getting on with the day can help with both those things.
This is going to be very strange, but I am still losing my mind over this kissing sound not sounding the same. I uploaded an unlisted video to youtube to show the kissing sound. I think it sounds very different, like its not as powerful as it used to be and the pitch is off:
https://www.youtube.com/watch?v=lp318Z5xSN0
The first bit is a mixture of the old and new and then I split them into how it used to sound and how it sounds now.
Sorry if this seems absolutely crazy I'm just convinced I'm dying.
Kingdawson
30-01-19, 12:49
Why do you think this would "sound very strange" to others?
Why do you think this would "sound very strange" to others?
Because I understand that asking strangers on the internet if they think my kissing sound sounds different than it used to is a strange thing to do. What do you think?
Midnight-mouse
30-01-19, 13:14
I’m really not sure why I watched but I did, over and over to try and hear what your worried about but I can’t.
Have you considered that the changes your hearing could be to do with the fact that it’s winter and your lips could be more dry than before?
Also medically speaking it’s only concerning if you can not do something, you can still definitely make the noise.
I think of it in a similar way to the fact that I can sometimes whistle very well and loud but other times I just blow hot air, it’s not something to be considered strange or in any way serious.
Positive vibes,
Mouse.
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Also medically speaking it’s only concerning if you can not do something, you can still definitely make the noise.
I only put in the best examples that sounded the closest to what it normally sounds like. If I try it the same way I used to practically no sound at all comes out. In hindsight I should have put those in. I was just trying to make myself feel better :(
Everyone I talk to, from doctors, to friends, to family all say I am fine and it is in my head, but I literally can’t do this anymore and I have a terrible gut feeling something is horribly wrong and I’m doing to die. I literally can’t look forward to anything because I’m so convinced that I will be gravely ill or dead by then. It’s ruining my life.
Midnight-mouse
30-01-19, 13:37
I only put in the best examples that sounded the closest to what it normally sounds like. If I try it the same way I used to practically no sound at all comes out. In hindsight I should have put those in. I was just trying to make myself feel better :(
Everyone I talk to, from doctors, to friends, to family all say I am fine and it is in my head, but I literally can’t do this anymore and I have a terrible gut feeling something is horribly wrong and I’m doing to die. I literally can’t look forward to anything because I’m so convinced that I will be gravely ill or dead by then. It’s ruining my life.
There is something wrong, it’s the condition that’s causing this thought patterns to occur. I don’t say this lightly, believe I have had my fair share of these moments.
Did you entertain the notion it could be something as simple as your lips being exposed to winter air or just being one of those things the same as my apparent inability to whistle even though I know I can and well too.
Positive vibes,
Mouse
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The worry about the ALS is only a symptom, though - this has been very clearly established.
The disease is your anxiety, and honestly, it's removing your quality of life as surely as any neurological diagnosis. It's not an easy disease to recover from, but breaking the reassurance seeking cycle is a good first step.
I originally wondered if it was because of the winter air, but it has been happening non-stop for two weeks, even when I am in the house all day and nice and warm. It doesn't appear to be anything to do with the weather. It's literally just like I woke up and the ability was gone and I have no idea what happened, but all I can think is that it is ALS :(
The ability hasn't gone, though, you've been told this by other people.
One of the hardest things to accept about anxiety is that you can't necessarily trust your own judgement when it has a grip.
The ability hasn't gone, though, you've been told this by other people.
One of the hardest things to accept about anxiety is that you can't necessarily trust your own judgement when it has a grip.
The video I put up was probably a mistake as I showed my best attempts at re-creating the old sound. When I try it 90% of the time no sound comes out.
Because I understand that asking strangers on the internet if they think my kissing sound sounds different than it used to is a strange thing to do. What do you think?Yes, you've just recorded a video of yourself making kissing sounds, uploaded it to the internet, and shared it with strangers on a forum to determine if you have a rare neurological disease based on the sounds of the kissing. Let that sink in a few times and ask yourself if there's even one shred of logical behavior in that.
You must treat your real disease - anxiety.
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Yes, you've just recorded a video of yourself making kissing sounds, uploaded it to the internet, and shared it with strangers on a forum to determine if you have a rare neurological disease based on the sounds of the kissing. Let that sink in a few times and ask yourself if there's even one shred of logical behavior in that.
You must treat your real disease - anxiety.
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Amen! Well said!
Positive thoughts
I have a quick question. One of the symptoms I’ve been worried about is a feeling of a lump in the back of my throat. Am I right in thinking that it is unlikely to be ALS because when I wake up first thing in the morning it’s gone. It’s only after I’ve been awake for a bit and started talking that it begins to come back.
I have a quick question. One of the symptoms I’ve been worried about is a feeling of a lump in the back of my throat. Am I right in thinking that it is unlikely to be ALS because when I wake up first thing in the morning it’s gone. It’s only after I’ve been awake for a bit and started talking that it begins to come back.
Please read my earlier reply (https://www.nomorepanic.co.uk/showpost.php?p=1852939&postcount=58) as well as the sticky and answer that question.
Positive thoughts
I’ve just come back from my EMG appointment. The doctor was very nice and I told him my worries. He just looked at me like I was a crazy person haha. We firstly did the nerve conduction test on my arms and legs. We then went into the needle section. He tested me in my right arm, right leg, back and under my chin.
After the test he said that everything was alright and there was nothing sinister shown at all. No nerve damage was seen anywhere. He’s gonna write up a full report about everything and I’ll get that back when I next see my neurologist. So fingers crossed this will be enough to put my mind at ease.
I’m gonna continue going to my therapy sessions and hopefully keep my health anxiety dragon in it’s cave.
Kingdawson
31-01-19, 20:35
Well done
Excellent! Keep at it and someday you'll look back on this thread and marvel at how far you've come!
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