View Full Version : Why do I do it to myself?
Guys, I thought I was finally getting a handle on this bulbar-onset ALS fear. Three months have passed, and I figure I'd have had significant progression in that time if I had it.
So, feeling kind of confident, I decided to "reassure" myself by reading the Newly Diagnosed section of the ALS forums. Bad move. There are all these cases of people with symptoms milder than mine being diagnosed. And there are LOTS of instances where neuros suspected ALS on account of tongue fasciculations alone!
And now my fear is back in full force
We all have setbacks, the important thing is to not be too hard on yourself about it.
When we worry about something long enough we actually change our brain a bit, so it's hard to break. It takes a long time of no use to lose it. So don't beat yourself up, I do this with my fear of fainting to the point I will be bed ridden for weeks at a time.
Worrying won't make anything better in the long run, keep your head up, best wishes!
So I guess I should avoid reading those since they likely match my symptoms huh? Ugh. Why does it have to be so hard?
Block the ALS forums. Just block the website using the parental controls on your browser. You have no reason or business going there, and obviously you won't find reassurance there anyway.
Block the ALS forums. Just block the website using the parental controls on your browser. You have no reason or business going there, and obviously you won't find reassurance there anyway.
I need to do that too Bc this post just made me go look to see if their symptoms match mine...low and behold, many did and suddenly I feel worse.
I did block it on the main Chrome browser. But I can still get there through Chrome's incognito window :mad:
---------- Post added at 14:39 ---------- Previous post was at 14:37 ----------
I need to do that too Bc this post just made me go look to see if their symptoms match mine...low and behold, many did and suddenly I feel worse.
Oh crap. I'm sorry, Breezie. That was selfish of me. It should have occurred to me I might trigger others. Apologies
Hey Melfish
Visiting a forum for people that have something you fear is never a good idea.
You will feel overwhelmed from the number of people that are active there.
Just think of it this way... If there was a forum specifically for lottery winners, visiting that forum would make you go buy a ticket :)
(English is not my first language, please excuse any errors on my part.)
Block the ALS forums. Just block the website using the parental controls on your browser. You have no reason or business going there, and obviously you won't find reassurance there anyway.
Agree 100%! Based on the lack of self control exhibited by Googling, the temptation to go from reading the site to posting on it will become more and more difficult to resist and the last thing you want to do is burden those poor people actually suffering from this disease when you don't have it. If you've been reading there, you know that the posts from those worried about it are literally identical to what's posted here.
Take the blocking one step further and have a friend or loved one password protect the parental controls so you can't turn them off.
Positive thoughts
I did block it on the main Chrome browser. But I can still get there through Chrome's incognito window :mad:
---------- Post added at 14:39 ---------- Previous post was at 14:37 ----------
Oh crap. I'm sorry, Breezie. That was selfish of me. It should have occurred to me I might trigger others. Apologies
Haha it's ok! I did go ahead and block the forum though. And I looked up sensorimotor OCD while I was at it Bc my saliva got excessive during my panic mode while visiting the dreaded site. I'm a little confused though...I'm not hyper focused on my saliva production Bc I fear choking on it...I fear it Bc I'm scared something wrong with me is causing the issue. You think it's still that type of OCD?
And I looked up sensorimotor OCD while I was at it Bc my saliva got excessive during my panic mode while visiting the dreaded site. I'm a little confused though...I'm not hyper focused on my saliva production Bc I fear choking on it...I fear it Bc I'm scared something wrong with me is causing the issue. You think it's still that type of OCD?
Ha, you're asking ME?! I'm so confused/stressed by all this, I can't tell what's a symptom, what's anxiety, and what's cognitive distortion. It's hurting my brain trying to tease it all apart
---------- Post added at 15:12 ---------- Previous post was at 15:10 ----------
Take the blocking one step further and have a friend or loved one password protect the parental controls so you can't turn them off.
I've thought about this, but then I'd have to fess up my fear to my OH ...
---------- Post added at 15:13 ---------- Previous post was at 15:12 ----------
Hey Melfish
Visiting a forum for people that have something you fear is never a good idea.
You will feel overwhelmed from the number of people that are active there.
Just think of it this way... If there was a forum specifically for lottery winners, visiting that forum would make you go buy a ticket :)
(English is not my first language, please excuse any errors on my part.)
Excellent point, Zomboy. (BTW, I can't even tell English is not your first language)
Take the blocking one step further and have a friend or loved one password protect the parental controls so you can't turn them off.
Positive thoughts
I would do what Fish suggested.
I would do what Fish suggested.
I made my husband set the code and not tell me. At this point he's ready to burn my phone, so he was more than willing to set it for me.
Breezie, I'm pretty sure it's not excess saliva production, it's that it's harder for people with ALS to clear saliva because of swallowing issues. I've had bouts of noticing excess saliva dating back years, way before ALS was even on my radar. I'm pretty sure it's stress related, as is dry mouth. I seem to bounce between the two.
---------- Post added at 15:25 ---------- Previous post was at 15:24 ----------
I made my husband set the code and not tell me. At this point he's ready to burn my phone, so he was more than willing to set it for me.
:roflmao::roflmao:
MyNameIsTerry
20-08-17, 01:04
Haha it's ok! I did go ahead and block the forum though. And I looked up sensorimotor OCD while I was at it Bc my saliva got excessive during my panic mode while visiting the dreaded site. I'm a little confused though...I'm not hyper focused on my saliva production Bc I fear choking on it...I fear it Bc I'm scared something wrong with me is causing the issue. You think it's still that type of OCD?
HA is a sufferer's term and meaningless to a doctor who uses a real diagnosis manual that doesn't include HA. But HA as sufferer's see it does overlap into OCD so it's entirely possible to be a HAer with OCD as the reason they are experiencing their HA.
Sensorimotor OCD is crippling, it's non stop. You would want to consciously control the bodily process because you feel you have to.
---------- Post added at 01:04 ---------- Previous post was at 00:57 ----------
You can block them if you want, but you can simply remove the block and read them anyway. It will always still come down to self control.
But it can be useful in that it inserts a "waiting time" which is encouraged in breaking compulsive activity. The trouble is, it needs to be a bit more than a few key presses on a device. For instance, you make it hard to access by providing barriers to access it like putting a phone as far away from you as possible.
I had to do some of that with watches & phones early on because I was obsessively monitoring the time.
Any therapist understands that blocking something out of fear is avoidance. It may be necessary at first but to break the fear you will always have to confront it or it will just hide away. This is why therapists have some of you reading cancer stories to desensitize through ERP.
Rather than avoidance, you want adaptive behaviour. This isn't driven by fear. It's hard though as means normalising why you do things so that it becomes "I don't check an ALS forum because I don't have any reason to be there". "I'm scared of reading stories on an ALS forum so I'm going to block it"...is avoidance which puts importance on the issue and adds to the core beliefs.
White polar bear exercise. Try not to think about it and you will because the brain requires more energy to work on ensuring it is not thinking about something than not thinking about it in the first place.
Terry, it's not that I feel I need to control involuntary processes like swallowing, more that I've become aware of them and can't get them to go unconscious again. I'm *always* aware of my tongue too.
Agree re avoidance vs adaptation. I think that's what I was trying to prove to myself when I went back on the ALS forum - to confirm I didn't belong there - but I was premature and it totally backfired :/
MyNameIsTerry
20-08-17, 01:32
Beating this is long term goal and building up in steps will prove to you that you are making progress i.e. ERP. I wouldn't be too upset right now, it as just too much too early. We tend to just want to get better NOW NOW NOW!!! but I'm afraid it's not the way lot goes for a lot of us. I learnt that the lesson the hard way too when I came off meds when I and't challenged things enough.
Sorry, I was replying to breezie who was asking about SOCD. I know what you mean about the hyper awareness issue because I went through manual breathing for some time too. Many on here have had manual breathing. And the symptoms awareness is just part of it for a theme like yours. SOCD tends not to have this HA concern behind it.
Ok so when I was younger, like high school age, I was put on Luvox for "OCD" which was really to treat my HA. And it did help to some extent Bc the compulsive part of my HA is the googling, the checking, the vocalizing my fears, etc. but I def don't obsess over trying to control my saliva...I just fear it all being some dreadful disease causing what is likely completely normal bodily functioning. I too get the whole manual breathing thing. And I notice myself swallowing uncontrollably Bc I think I have excess saliva but then suddenly my mouth is soooooooo dry, likely Bc I'm literally suctioning all the saliva out of it! Haha! God I'm crazy lol. Laughing about it usually helps to some extent. I've literally been battling HA since I was about 7 and thought I had a brain tumor Bc a girl at school did. That fear resurfaces on occasion to this day.
---------- Post added at 18:12 ---------- Previous post was at 18:10 ----------
Terry, it's not that I feel I need to control involuntary processes like swallowing, more that I've become aware of them and can't get them to go unconscious again. I'm *always* aware of my tongue too.
Agree re avoidance vs adaption. I think that's what I was trying to prove to myself when I went back on the ALS forum - to confirm I didn't belong there - but I was premature and it totally backfired :/
Gosh I'm aware of my tongue from the second I wake up til the second I fall asleep. I hate it.
I have SOCD and HA and I do find avoidance tactics very helpful particularly in managing the SOCD. It may be the wrong thing to do in terms of what is written in manuals but I can't even go there when it comes to reading about manual breathing etc. It's worked for me so far but I do think Sensorimotor OCD is a huge challenge and you've got to find what works for you regardless of what is correct in terms of what therapists say.
Look, I get the whole avoidance vs. adaptation thing. It makes total sense but until someone is in professional therapy (which many times never happens) there won't be an opportunity to go through the healing progression and even then, it can be months or even years for some to get to that point. Also, one must continue to work on the techniques to keep the dragon at bay and avoid falling back into old habits which as seen on these boards happens to many.
I equate a situation like this to managing reflux. You know going to the ALS boards will cause additional stress just like you know certain foods will give you reflux. The solution is AVOID THEM! This is an acute scenario that needs an immediate response to prevent it from continuing. It's so bad that in spite of blocking the sight, it's made available incognito. The OPs doing this on the sly as well as her OH doesn't even know about the fear which in itself isn't healthy!
I also can use my problem with gout as an example. The physical pain from a flare up is excruciating (the mental pain the OP and others suffer from their behaviors are equally as bad albeit mentally). Some foods as well as alcohol can cause a flare up. I rarely drink (a beer or two every once in a while with dinner) as it can and has caused a flare up (I take medication that makes it clear not to drink also). There are certain foods that can and have caused a flare up too. I love some of those foods but I AVOID them. In both cases, to avoid the physical ramifications that these eating behaviors can cause, I avoid the foods that aggravate it. In the same manner, if you're in the midst of an anxiety fire, it's only common sense not to pour lighter fluid on the fire by visiting a site that makes things worse.
Getting professional help is paramount. Learning to accept and adapt are parts of that. In the mean time, stop feeding the damn fire and just stay the hell away from the ALS forums! ;)
Positive thoughts
I agree. There has got to be some sort of self discipline involved whether you are in therapy or not.
One more comparison... When an addict can't stop and they're harming themselves, there's an intervention and they're committed to a drug rehab to dry out. This, in a way, is what I'm suggesting. You need to be forced to "dry out" from this habit that is causing you undue stress and fear. The worst part is that your continuing to hold onto a fear of a disease you clearly don't have.
Of ALL the fears on this board that I've read about over the last few years, I know of TWO that actually had something going on and both are fine. They dealt with it and their anxiety took a back seat during that time. AND... their anxiety has remained in the back seat since. If it means talking to your OH and getting help, then do it!
Positive thoughts
Thanks, everyone, especially you, Fishmanpa.
I understand what you are saying, intellectually. I can also stand back and see how my behaviour is irrational.
Unfortunately, those two things do nothing to alleviate the fact I think I could very well have this condition. I googled my symptoms and repeatedly came across ALS. This all didn't start with a fear of the disease itself. It wasn't on my radar whatsoever, unlike some posts I read on here. Rabies, for example, where people have an overarching fear of the disease FIRST, and then worry about having contracted it. If I didn't have those symptoms, ALS wouldn't have entered my consciousness at this time in my life.
And when I look at it that way, it keeps me in the "what ifs?" ...
MyNameIsTerry
20-08-17, 16:04
Did you rule out every single possible disease, disorder? Physical & mental? Did you look at symptoms which oppose ALS?
Unless you do all that, how can you say you don't have something else?
I concede I was understand an incredible amount of stress when I noted the symptom that triggered this. I hadn't been eating properly for weeks prior, was run down, and barely sleeping. Anxiety?
Thanks, everyone, especially you, Fishmanpa.
I understand what you are saying, intellectually. I can also stand back and see how my behaviour is irrational.
Unfortunately, those two things do nothing to alleviate the fact I think I could very well have this condition. I googled my symptoms and repeatedly came across ALS. This all didn't start with a fear of the disease itself. It wasn't on my radar whatsoever, unlike some posts I read on here. Rabies, for example, where people have an overarching fear of the disease FIRST, and then worry about having contracted it. If I didn't have those symptoms, ALS wouldn't have entered my consciousness at this time in my life.
And when I look at it that way, it keeps me in the "what ifs?" ...
I blame Brian for all this....he's a mischievous mutt getting you to Google all the time :lac:
I also think a SOH keeps things in perspective sometimes. Yes, it is possible we have x, y, z illness but so what? We will eventually succumb to something. And if it's therefore a matter of time, let's use that time wisely.
Or we can just surrender now...
Thanks, everyone, especially you, Fishmanpa.
I understand what you are saying, intellectually. I can also stand back and see how my behaviour is irrational.
Unfortunately, those two things do nothing to alleviate the fact I think I could very well have this condition. I googled my symptoms and repeatedly came across ALS. This all didn't start with a fear of the disease itself. It wasn't on my radar whatsoever, unlike some posts I read on here. Rabies, for example, where people have an overarching fear of the disease FIRST, and then worry about having contracted it. If I didn't have those symptoms, ALS wouldn't have entered my consciousness at this time in my life.
And when I look at it that way, it keeps me in the "what ifs?" ...
My HA always starts with symptoms, not with fear of a particular disease I'm fixated on. And all my symptoms start as REAL. I believe I just worsen them with fear, hyperfocus on them and constant googling. So I don't think the fact that you came across ALS based on symptoms holds any value or importance. But I do understand everything you are going through and this particular fear is by the worst Ive experienced with my lifelong HA.
Thanks, Breezie. Yes, this is for sure the worst fear I've experienced with HA too. I'm still not convinced it is HA, though I was under a LOT of stress, both physical and mental, when it began.
The worst part is, there's no escaping it. It's the first thing I think of when I open my eyes and the last thing I think of when I finally go to sleep. It's relentless
Its for sure relentless. I started the tongue inspecting last night and drove my husband nuts. I woke up to having bit my cheek all night long to the point of bleeding. And I'm questioning if I'm choking on my own saliva today. It never lets up. I never stop thinking about it. I wish we could get over this fear already.
I am under a lot of mental stress and develop many interesting neurological and physical symptoms. Longstanding mental/physical distress manifests itself eventually in convincing physical symptoms which continue as long as they are given significance by the sufferer ..and beyond as well. But believing this is another matter of course.
Yes, it's crazy that you can hold these two conflicting beliefs at the same time: HA vs organic illness. The cognitive dissonance is making my brain explode.
---------- Post added at 11:28 ---------- Previous post was at 11:27 ----------
Stop examining your tongue, Breezie. It's a one-way roadtrip to anxiety hell. You'll find ALL SORTS OF STUFF you wish you'd never noticed
Yes, it's crazy that you can hold these two conflicting beliefs at the same time: HA vs organic illness. The cognitive dissonance is making my brain explode.
---------- Post added at 11:28 ---------- Previous post was at 11:27 ----------
Stop examining your tongue, Breezie. It's a one-way roadtrip to anxiety hell. You'll find ALL SORTS OF STUFF you wish you'd never noticed
The uncertainty over your "diagnosis" will keep the HA thriving, melfish.
The uncertainty over your "diagnosis" will keep the HA thriving, melfish.
I know :scared10:
As will being scared..
Do you mean neurochemically or psychologically?
Both
---------- Post added at 20:35 ---------- Previous post was at 20:33 ----------
Acquiring too much information on medical conditions you are not professionally trained to interpret correctly and appropriately is also not a good thing.
Yeah, I could see how the fear and compulsive checking/reassurance seeking could mess with the flight/fight and reward responses. and that it could become a self-perpetuating cycle ...
I concede I was understand an incredible amount of stress when I noted the symptom that triggered this. I hadn't been eating properly for weeks prior, was run down, and barely sleeping. Anxiety?
Thanks, Breezie. Yes, this is for sure the worst fear I've experienced with HA too. I'm still not convinced it is HA, though I was under a LOT of stress, both physical and mental, when it began.
You keep repeating that you were under immense stress yet don't explain the cause of this. I find your posts very cerebral and intellectual, as if you are musing on the mechanisms and constructs of HOCD.
What purpose is this serving?
Yeah, I could see how the fear and compulsive checking/reassurance seeking could mess with the flight/fight and reward responses. and that it could become a self-perpetuating cycle ...
Yep, that's it. That's HA OCD. So once you realize that, you only have two options:
1) Are you going to do things to continue the cycle?
2) Are you going to do things to stop the cycle?
MyNameIsTerry
20-08-17, 21:38
Yeah, I could see how the fear and compulsive checking/reassurance seeking could mess with the flight/fight and reward responses. and that it could become a self-perpetuating cycle ...
If you have OCD, compulsions only reinforce obsession by indicating to the subconscious that what is is sending has importance to the subconscious. This is why reducing compulsions can help you win the first battle against an obsession BUT you still have to tackle the obsession from there as removal of compulsion reduces anxiety & peak but won't change what is lurking enough to get rid of it.
In OCD, compulsions are aimed at rducing anxiety but to honest, at my worst I found they just amped me up even more as they were too thick & fast and I became frustrated too.
Whilst I made the point about avoidance vs. adaptive thinking, because I find HA boards tend to forget that long term pushing away contact with stressors will only take you so far, I agree with inserting breaks and using avoidance early on - I did it myself, my anxiety was just too much. I ran from work for a long time, so don't think I'm saying it's not very useful in removing yourself from something that is too overwhelming but later comes exposure. I relapsed because I didn't do enough of the latter in a structured way to get me further on.
Melfish, when my twitching started I didn't even know about any disorder that could cause it, all I knew was that at the time of it starting I was in a lot of anxiety and stress... and then I googled.
After googling all of a sudden I remembered all the times in the recent past where I felt like I couldn't swallow right, talk right, felt leg "weakness", all the things that would confirm my fear.
Just like you I thought that the symptoms were causing the anxiety, but it was the way around.
Confirmation bias is a wierd thing isn't it :D
I hope that's the case for me too, I so do
I wish we could come up with a way to distract from the symptoms long enough to focus on healing. I had a major meltdown today and my husband had to just hold me and let my cry it out. After that I felt a bit better til I started thinking about my tongue being too big a little while later. Then slowly all symptoms start creeping back in one by one... :weep: we need to break the god awful cycle.
I can soooo relate. It's like a crazy merry-go-round and I just wanna get off
Yep, that's it. That's HA OCD. So once you realize that, you only have two options:
1) Are you going to do things to continue the cycle?
2) Are you going to do things to stop the cycle?
I think you have to consider how you are using this HA forum and how this is contributing towards keeping the perpetual cycle going.
I think you have to consider how you are using this HA forum and how this is contributing towards keeping the perpetual cycle going.
You are quite right, pulisa. I am going to the ALS boards and freaking myself out, then coming here for reassurance. It's ridiculous
So maybe now is the time to stop looking at these boards for your own sanity? Put a block on them if you feel the temptation to "browse" is too much?
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