View Full Version : bulbar fear getting out of control
OK, so now I've gone from examining my tongue/soft palate all day to growing fearful of mirrors. This either ends with a diagnosis or insanity (apologies for being dramatic) :scared10:
If everyone you talk to is not asking if you are severely drunk or having a stroke then you don't have bulbar.
Stop looking at your tongue, you are not qualified and you'll only scare yourself.
It is the rarest type of an already very rare disease.
Get help for a professional. Its the only way I was able to get a handle on it.
I hope you're right, but I worry that I have early signs of it, before the obvious slurring etc. My mind just can't accept that it's anxiety. Or, more correctly, I guess I can't stand the thought of writing it off to anxiety, then being proved wrong down the track. I feel like I can't let my guard down, you know?
Bulbar is also the type that progresses the fastest. Its relentless and savage and not subtle.
I can understand not wanting to admit its anxiety, thats a real struggle for me too. You have nothing to lose though. You will not be able to start healing till you start to treat the underlying anxiety.
When you get this anxious, you need to try to find things to distract yourself. You have to try to change your inner tv channel. Go for a walk, go shopping, get a mani pedi, journal, garden, do something besides sit there and fixate in front of the mirror.
I've been trying to distract myself, and sometimes it works, but oftentimes I can't even read (my main hobby). I just go over and over the same paragraph and nothing gets in. Same with movies, or interacting with other people. Usually, when I feel like this, I'd drink and get some relief that way - oblivion - but I quit three months ago (two weeks before this all started).
ive had health anxiety for 20+ years. Ive feared everything, but this one particular disease is by far the worst fear to have. Ive been in fear for 10 months now, trust me...its a horrible rabbit hole to go down. The more you go into it, the worse it will get. I wish I could fear MS again lol.
When you get this anxious, you need to try to find things to distract yourself. You have to try to change your inner tv channel. Go for a walk, go shopping, get a mani pedi, journal, garden, do something besides sit there and fixate in front of the mirror.
Totally agree and with respect... Logged on here, voicing your anxiety and sitting around waiting for reassurance is just feeding the dragon.
Positive thought
I know right?! I went through the MS thing in my 20s, and it was a breeze compared to this. This is eating me alive. When I look back, I can see that the MS fear was HA (and the lupus fear and the RA fear), but I don't think the bulbar fear is. I do think there is a serious possibility I have it. I can't eat and I can't sleep. I barely function. It's nuts.
---------- Post added at 17:34 ---------- Previous post was at 17:33 ----------
FMP, I can see that it's not healthy, but sometimes the replies really do help and I don't know what else to do until I can find a doctor.
I know what you mean about barely functioning. I have twitches and I'm positive i have als, no appetite . I force myself to eat. So today i ate my lunch and afterwards felt like some food was stuck in the back of my throat. So the next two hours i was thinking i had bulbar onset, i am a mess. Xanax doesn't help .i feel for you.
I know what you mean about barely functioning. I have twitches and I'm positive i have als, no appetite . I force myself to eat. So today i ate my lunch and afterwards felt like some food was stuck in the back of my throat. So the next two hours i was thinking i had bulbar onset, i am a mess. Xanax doesn't help .i feel for you.
Oh dear, you sound just like me. I'm having that sensation when I eat too. It's misery, isn't it?
It is and i use to be a pig when it came to eating now i dread every mouthful but i scope it down because if i lose more weight it will just induce more fear. Sometime i think being drugged out of my mind would be better but than i become rational somewhat, right now laying in bed there is a twitch in my back there was one before on the other side, my hand was twitching, driving me out of my mind, sometimes it like popcorn going off
It's all I can do not to neck a bottle of red wine, for some temporary relief from the stress of it, but I know that'll just make everything even worse in the morning. I so wish I could believe this is just anxiety, and it makes sense considering my HA history and that the tongue symptoms started during a very stressful time in my life, but the voice in my head won't stop insisting that this time it's different, that this time there really is something wrong.
I've been trying to distract myself, and sometimes it works, but oftentimes I can't even read (my main hobby). I just go over and over the same paragraph and nothing gets in. Same with movies, or interacting with other people. Usually, when I feel like this, I'd drink and get some relief that way - oblivion - but I quit three months ago (two weeks before this all started).
I get it. When I first got PTSD, after the death of my friend, all I could think about was how he died. I would become anxious about what ifs. I would wonder about his last moments. I would go over them in my head over and over again, with every variation of what happened. I would relive the moment of finding his body. Everything I saw reminded me of him. I quite literally didn't know how I could go on at some times.
My anxiety was on overload, but I had to force myself to change the channel in my brain. I couldn't function otherwise, and it was not easy. I went to individual therapy and grief counseling (which I know you are on a waiting list for a doc), but therapy was only twice a week. What about all the other times I was alone? I started exercising, making sure I walked a couple of miles a day at least, so I could sleep easier at night. I started writing down my feelings in a journal. I read about grief and PTSD. I cut back on extra things at work that stressed me out, and I joined things that would keep me busy. I took up new hobbies like gardening. Going on medication really helped a lot too. The bad thoughts still came, but I didn't dwell on them as much.
My point it that changing is hard. It's not going to be easy, but you've got to set small goals for yourself and do a little bit more each day.
That's exactly what i say. It's different i have all these twitches. Thought i had a brain tumor in my 20's, in my 30's thought i had hiv, i was one of the very first to get tested with the new test, 40's another hiv scare 50[s pancreatic cancer and now 60's als, what a waste of time but i cant help the fear. We all carry the same story , i am going to try to go to sleep, know that you dont have bulbar onset and i dont have als. G night. You can private msg me if you want i will share my email
Annaboodle
04-08-17, 10:28
My anxiety was on overload, but I had to force myself to change the channel in my brain. I couldn't function otherwise, and it was not easy. I went to individual therapy and grief counseling (which I know you are on a waiting list for a doc), but therapy was only twice a week. What about all the other times I was alone? I started exercising, making sure I walked a couple of miles a day at least, so I could sleep easier at night. I started writing down my feelings in a journal. I read about grief and PTSD. I cut back on extra things at work that stressed me out, and I joined things that would keep me busy. I took up new hobbies like gardening. Going on medication really helped a lot too. The bad thoughts still came, but I didn't dwell on them as much.
My point it that changing is hard. It's not going to be easy, but you've got to set small goals for yourself and do a little bit more each day.
This is such good advice. OP, have you tried exercising today? Sometimes it's too much to expect to be able to concentrate on a book or a film. Sticking on headphones and brisk walking for a few miles while the music blasts can be a better distraction. Physical stuff in general - even tidying and cleaning helps me. Get outside if you can to snap yourself out this for today at least.
Anna, yes, I weight train four times a week and cycle about four miles a day to get the heart rate up. I do feel better after I've done it, but then the dread seeps back in ... I am going to take up mediation too.
Trouble is, my mind keeps saying, "what's the point? If you have ALS, all this is about to be stripped from you. You won't even be able to lift a cup, let alone bench press 70 pounds." And this just undoes all the feel-goodness of the endorphins.
Until I can accept it's not ALS, all the anti-anxiety tools in my box are worthless :(
---------- Post added at 07:28 ---------- Previous post was at 07:22 ----------
Becazican, I hope you slept well. For some reason, I dread the weekends more. I guess because it's hard to be around other people with this taking over my head. Weekdays, I spend a lot of time alone and can just withdraw and/or distract. Arghhhh. Here we go again ...
MyNameIsTerry
04-08-17, 15:34
Trouble is, my mind keeps saying, "what's the point? If you have ALS, all this is about to be stripped from you. You won't even be able to lift a cup, let alone bench press 70 pounds." And this just undoes all the feel-goodness of the endorphins.
Until I can accept it's not ALS, all the anti-anxiety tools in my box are worthless :(
In 50 years time I will probably be dead...what's the point? Same type of negative thinking. But what if you live another 50 years without ALS? Imagine looking back on that and no longer have a choice to make a better life for yourself?
Acceptance is but one tool in that box. It's a very hard one to learn. But that doesn't mean the rest aren't helping either. It's great that you are exercising, if you weren't you may find yourself in an even worse place mentally. Therefore, a tool in the box is helping.
Beware negative thinking styles. They are skewed.
I think the previous post has great advice, look at all the time i wasted, dont let that happen to you.
Ha, Terry, you nailed the flaw in my thinking. If it's not ALS, if will indeed be something else that kills me. We are all dying. In my calmer moments, I am able to apply an adapted form of Pascal's wager to my predicament and it does help. Also, Stoic philosophy, particularly ol' Marcus Aurelius :)
MyNameIsTerry
04-08-17, 16:25
It's the same as many on here have been saying to people just like since long before I joined.
My dad suffered depression for a couple of years over 40 years ago, beat it and has never relapsed despite the challenges if getting old and losing people to a lot of things people fear on here. He told me I needed to change the way I was thinking and make more thoughts more positive. There was no therapy back in his back or all the books, it was just the kind of logic that has been around for a very long time that anxiety gurus tend to package up.
Stoicism is a good example. CBT has it's roots in it. Human beings have always had challenges and mental health has been an issue long before someone dreamd up the labels for it. There are many lessons in antiquity like you say, we've only got to look at Buddhism to see the impact some of it's teachings are having on us now in treatment of not only mental health concerns but the mind in general whether it's sport, business or even physical disease in tackling the impact of symptoms.
It's very hard to change thinking. You more quickly get to grips with doing this at a conscous level but getting the subconscious to observe the lack of fear reaction in order to mothball all the old core beliefs is the longer process.
Something I found with negative thinking is that it also sucks you into depression. Once I found my way out of that, my mood greatly improved.
When I started CBT I felt the same, I didn't feel it was working although it seemed logical. I remember thinking how can all these words change such powerful feelings. The later on when you've made a big shift you look back and realise that was more negative thinking and it's now proven untrue.
Sometimes you have to keep doing the things that can/may pull you out of this to suddenly feel a change. Until then it can feel like an uphill slog with little or no benefit. It took me months to get anything out of Mindfulness but when it started, it was noticeable. Six months later and the changes were clear in my thinking. it was the same for me with other exercises too.
Melfish, something you need to keep in mind is that looking at your tongue in the mirror, keeping your mouth open too long sticking out the tongue etc... will cause those muscles to feel tired and give you the feeling that they're not working right.
Same for swallowing, focusing on swallowing (which should always be a natural process you never really pay attention to) cause you throat muscles to slightly tighten up.
Speech and swallowing issues
Many visitors fear bulbar onset. Generally speaking the first symptom of bulbar is slurred speech because the tongue does not work correctly. Sore throat, scratchy voice, food getting stuck are not bulbar symptoms and should be addressed by your doctor as they may indicate another issue but are NOT ALS. Saliva issues occur late in bulbar disease and noting excess saliva is NOT a sign of bulbar onset. The slurred speech of bulbar onset is persistent not a one- time or rare occurrence and will be noticed by others. If you are not being asked " are you drunk?" it is a good sign!
Complaints of difficulty swallowing and or a lump/ something in the throat are very common among our DIHALS visitors. Please look up globus and learn that it is a very common complaint especially among the stressed
Special note of tongue twitches. First if you stick out your tongue it will twitch. Neurologists examine our tongues at rest if they are looking for tongue fasciculations and those fasciculations are persistent not an occasional twitch. If you have been trying to examine your tongue stop! There is also a commonly repeated belief that tongue twitches are never benign. This is NOT true- they usually are benign. The source of this information appears to be an out of context quote by an ALS specialist. He had said that tongue twitches were never benign in his experience. He has since clarified he was speaking of tongue twitching in a patient already diagnosed with ALS. In his clarification he added that in the general non- ALS patient tongue twitching was most likely benign.
Positive thoughts
Thanks for talking me off the ledge, everyone. I keep telling myself that things would likely have significantly progressed in the 10 weeks I've been freaking out about this. I HATE self-pity, it's a horrible emotion, and I'm trying my best not to succumb to it. Thank you for your kind words and reassurance. It does help.
Today, after I work out, I'm going to start reading "Peace is Every Step: The Path of Mindfulness in Everyday Life" by the Buddhist monk Thich Nhat Hanh and see whether any of his wise words can penetrate my thick skull :blush::
cyberchondriac.
04-08-17, 19:15
What a cruel situation to be in. You were me in December through to April. Though mine wasn't a bulbar fear. Just ALS. Ha, I say 'just'! It was absolutely horrific. I've been through rape and a miscarriage and I can honestly say thinking I had ALS was far far worse than both of those put together.
I will be blunt and honest and say that the only thing in my opinion that will get you over this is time. Time to realise that the bulbar als you're convinced you have isn't progressing. That in actual fact you haven't lost a single ounce of strength. That the physical symptoms, which are there, are caused by anxiety!
I'm hugging you over the internet because I know how deeply depressing the als rabbit hole is. It stole months of my life to the point that mr Dr almost sectioned me because I had a full blown breakdown in her office! But fast forward a few months and I now know I was being irrational. About the als anyway... ��
Thank you so much for taking the time to write that, cyberchondriac (I like your handle, btw). You get it completely and what you say about time is so true. I, too, believe it's really the answer, one way or another, because I've second-guessed doctors in the past. What a way to live in the meantime, though, huh? :wacko:
MyNameIsTerry
05-08-17, 05:21
That looks a good book. Professor Mark Williams is good for his MBCT approach, a later variant of your Jon Kabat-Zinn's MBSR. But I've seen a bit of that monks work (I think) and it was interesting. Deeper.
Self pity comes with mental health issues. It's another one of it's traps. Another trap is berating yourself for feeling something. We tend to be hard on ourselves as it's in our nature and this can be problematic. It can be more negative thinking.
It's natural, as is kicking yourself, but I think acceptance is needed here too. If you learn to accept it is just a stage and not indicative of where you will be soon, you are more likely to avoid the low mood it can lead to or just avoid more frustration. Accepting helps you to move on rather than dwell.
Thank you so much for taking the time to write that, cyberchondriac (I like your handle, btw). You get it completely and what you say about time is so true. I, too, believe it's really the answer, one way or another, because I've second-guessed doctors in the past. What a way to live in the meantime, though, huh? :wacko:
Yes, time will prove that you don't have ALS...but like you said, is that anyway to live during the meantime? If you're okay with being like this until enough time passes to prove that you don't have ALS, then so be it. But if you don't like living like this, then you're going to have to start doing something different.
MyNameIsTerry
05-08-17, 05:37
I think those are both valid points. Time will provide you with the evidence but it will of course be up to you to use that evidence because you are working against irrational thinking. It will try to say "but perhaps you are a rare case that takes longer to start up".
But it's true that you lose that time so it's better to try to put it to good use and not let anxiety put things on hold. I struggle myself with this.
And I think you need to remember the issue is HA and it will shift to another fear eventually unless you deal with the HA, not it's current theme. There are illnesses that involve extremely long periods of time before symptoms present e.g. a young smoker worrying about lung cancer later in life or someone exposed to asbestos (or perceived they may have) which may mean a 40 year wait & longer if it comes at all.
"time will prove you don't have it". So, ive been fearing this awful disease for 10 months now. Is 10 months enough time to know for sure you don't have it? 10 months later I don't notice any atrophy or weakness anywhere. I just get some pains, twitches, spasms, fatigue, scratchy voice off and on.
Logically, the only thing to do is try to live as though I don't have it. And if it turns out I do, then at least I won't have squandered the last of my health. Now, to apply this in practice ...
Logically, the only thing to do is try to live as though I don't have it. And if it turns out I do, then at least I won't have squandered the last of my health. Now, to apply this in practice ...
To apply it in practice, you need to try some of the suggestions that some of us have been telling you over the past few days... I know you exercise and are starting meditation, that's good. But if those things don't cut it, then it's time to try more things. Expand your toolbox.
I know I'm going to have anxiety for the rest of my life. I've always had it, and it's probably not going away. But I can keep it at 5% instead of 100% because I've found a the right combo of strategies to keep it down. Will it go up when shitty things happen in my life and I'm stressed out? Of course, and then I might have to try new things or use a different combo.
You've skipped a step. First I need to find a doctor to prescribe the medication. I live in far northern CA and it's a doctor desert up here and no practice is accepting new patients. (I think I want to try Zoloft, btw). What do I do in the meantime, though, for the stuff I can SEE?: tongue asymmetry and deviation, uvula deviation, my soft palate is not symmetrical. It's driving me CRAZY
U don't have an urgent care or some kind of doc in a box anywhere around you? They can and will prescribe you that kind of medication. Sadly for me the only thing that really shook this fear was time, but staying busy helped me get through the day without strength testing and looking up ALS cases. I went to 3 neurologists and they would tell me I don't have it and I'm too young. I would feel good for about a week then I would start focusing on my twitches and start freaking out again. Stay busy with different activities go out with friends or your lover. My fiance loved it because all our clothes would be washed and folded and the house would always be clean lol. You can get through this fear of the idea of having ALS because so many people on this forum have within the last 2 years.
---------- Post added at 11:58 ---------- Previous post was at 11:52 ----------
I forgot to mention Xanax and therapy helped me out a lot also I wouldn't take it everyday just when I needed it. I went to therapy once or twice a month for about year. If you feel like you can't get over this fear then go get help. I tried different antidepressants but I didn't like the way they made me feel, but that's just me, I know people that uses them and it changed their lives for the better. Just see what 2orks for you and go with it. We're rooting for you !:yesyes:
---------- Post added at 12:04 ---------- Previous post was at 11:58 ----------
Stop self checking ! Sorry to keep commenting lol. When you see yourself in a mirror with your mouth open looking for maladies go do something else tell yourself not today!. I saw deviation in my tongue and throat and roof of mouth, but 3 neurologists didn't. I asked a PA if she saw atrophy in my hand because I did she said maybe and I freaked out. The neurologist told me no atrophy. You have to stop with the obsessive compulsive checking because nothing on our bodies are symmetrical.
Thank you so much, nivek. I needed to read that :D
You've skipped a step. First I need to find a doctor to prescribe the medication. I live in far northern CA and it's a doctor desert up here and no practice is accepting new patients. (I think I want to try Zoloft, btw). What do I do in the meantime, though, for the stuff I can SEE?: tongue asymmetry and deviation, uvula deviation, my soft palate is not symmetrical. It's driving me CRAZY
My whole point is that there are things you can do while waiting for the doc...so you don't fixate on the things you see that are normal, but you interpret them as abnormal. Do you have your appointment set up already?
No, still trying to find a practice accepting new patients. It's ridiculous
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