Getting Upset Since Dysautonomia Began, Does Dyssy Do This?

[Mikey69]

Hi All,

Yes it's another question i'm afraid.

Ok, so, i've been severely ill with Fibromyalgia since age 18 and even more ill when CFS/ME started in my early 20s. i can honestly say that i have gone through some truly awful, awful times with both conditions. (grand Mal seizure, pre - seizures, collapsing many, many times, being unable to walk/and barely crawl for years at a time, blah blah blah. I've always just dealt with it, brushed myself off and got on with my life - always determined to rebuild my life as soon as my body would allow.

My Dysautonomia began presenting itself 2 years ago, and whilst i found the consciousness symptoms disconcerting in the early months, i just brushed them off as usual and got on with my life. In the past 6 months i began approaching collapse/fainting on an almost daily basis. I felt truly horrendous each time. Turns out i was having blood sugar/insulin issues and was becoming hypoglycemic. Again, i just took it in my stride, as i didn't know what was happening at the time. Again, it was very disconcerting, but i knew it would pass, so just carried on as best i could.

Then the Insomnia kicked in (over 100 days). This was very difficult to overcome, and i'm still not quite there yet. But thanks to the sleeping meds and sleep deprivation i found myself tearful and even totally distraught and inconsolable at times. This has never happened to me before. I've always been so strong and super cool about these things. But again, i knew it would pass when i got off the meds (i chose to stop using them after a week for one and a night for the other - preferring insomnia instead). Low and behold the tearfulness stopped once i began sleeping better.

So now to the question i have.

Now that i know a lot more about Dysautonomia I am able to recognize when i am having a 'Dyssy fit', (flare up to normal people). I'm currently having one as i write this. It's very unpleasant to say the least. i have noticed that when the Dysautonomia makes me feel particularly unpleasant/profoundly ill i can start to feel emotional/a little upset. I am not at the point of crying or being tearful, but it is definitely having an emotional impact on me. i never get upset or phased by anything, no matter how bad things can be, so i don't understand what is going on with this. Can Dysautonomia cause emotional changes/tearfulness, etc? I hate this when it happens - it always makes me feel 'emotionally weak', even though i know i am very emotionally strong and resilliant,

Thanks in advance,

Mike :-)

Mike

[fitnesskelly]

I believe it can. I was on edge and tearful the other day (and I'm not normally like that either) and I realized it's because I've been having a flare of symptoms lately.

Maybe a more knowledgeable person can help with this question since I am new to dysautonomia - isn't there some kind of "malfunction" in dysautonomia with the serotonin and dopamine receptors? That would explain the emotional struggles with flares, in my opinion.

[MomtoGiuliana]

I also believe that it can. We are all different and affected differently, of course. But I know that I had more variable emotions when I felt very poorly due to POTS. And in my case I think it may be partly why initially I was told I had depression instead of a physical illness. (However I will say that when I was evaluated by a psychiatrist at the request of my general practitioner, she did not feel I met the criteria for depression but rather was physically ill). It's very natural, IMO, to have emotional upheaval when you feel physically badly anyway. I also think that if you are having adrenaline surges or other disruptions of your sympathetic and parasympathetic systems, as I remember experiencing when I was most ill, the line between physical and emotional discomfort can blur.

As far as POTS affecting brain chemicals, I am not aware of research or theories on that. But these may be out there.

[targs66]

I'm also curious to hear any physiological theories for this. I used to have the most unshakable personality in my 20s and 30s. More than one person described me as "fearless," which seemed odd at the time because I couldn't understand what there was to worry about. Now in my early 50s, I am a basket case of anxiety. When I'm feeling my worst (having a "dyssy fit" - great expression ), I feel like I'm on the verge of tears. I feel (and probably act) like a frightened child. Is this what they call "emotional lability?"

I can only assume, given my past steadiness, that something physical is causing this unbearable anxiety other than the situations themselves. I've blamed it partly on my fear that my body just won't "work" when it should - that I'll either faint or fall down. But I'm curious to know if there's other explanations, like excess cortisol, or adrenaline, or something similar.

[Mikey69]

Hi Targs66,

it is a pleasure to meet you. Thank you so much for taking the time to reply to my post. Your efforts are appreciated. i too had/have? an unshakable personality. I have had many unbelievably unpleasant health - related events occur over the years, which have nearly cost me my life on a few occasions, which friends, family and aquaintences have told me were apparently very scary. I guess i just shrugged them off and comforted myself in the knowledge that i was still alive and that they were temporary states of being etc. I'm having another 'Dyssy fit' day today and it has been very unpleasant indeed. Once again, i find myself feeling a little moved/upset by how i'm feeling? This isn't like me at all. So i do wonder if your theories about chemistry are correct.

To be candid, i've collapsed numerous times over the years, and been at the point of collapse even more times of late. Especially when the apparent hypos were occurring and i didn't understand what was happening to me. I just used to try to carry on and work through it. I was never really scared - i guess i've been there so many times its become the norm? But this seems to have changed in recent weeks/months. i don't get scared or anxious because deep down i know it's probably not life threatening. Nevertheless i am finding myself reacting emotionally on some level. i think it's a subconscious thing though because i never let myself get worked up about anything. That being said, it has knocked my confidence somewhat when i am out walking alone in the middle of nowhere. last time i walked alone at night i found myself planning what i would do if the worst were to happen - calling an ambulance, planning where best to walk so i could be more easily found, etc. Nice eh? Needless to say i didn't need medical assistance! Silly eh?

I don't know if this will help or not, but the bottom line for me is that i know my CFS/ME and Fibromyalgia, and now Dysautonomia probably won't kill me - even if it makes me feel like it could (and it frequently does!). Also, no matter how bad i feel i know that it will pass in time an that i just have to ride it out. This always helps me, even on truly dire days/weeks/months. This became especially important during the past 120 days or so when i was plagued with awful insomnia every day. I honestly don't have the words to explain how ill i have been since the insomnia began. But, i know it will pass.

As for collapsing, i've done lots of that over the years and it has never done me any real harm. It's just really, really unpleasant at the time. I take some comfort in the fact that our bodies are designed to collapse at times as a protective measure. So for example, If you collapse because of blood pooling in your lower body, this is your bodies way of ensuring that blood gets to your brain immediately - i.e. you are horizontal so it's easier to achieve. if you faint because of low blood sugar, your body immediately responds - releasing insulin, which breaks down fat/sugars to replenish your supplies (i think i have that right). If you collapse because of overdoing it (i've done this lots), you stop when you are unconscious, then you tend to rest a while afterwards, which is just what your body needs.

I hope this helps.

[Katybug]

I found my emotions, especially anger/rage, were out of control at first...very much like the cranky,snippy mean I get when my sugar gets to low. Many moons ago, on a thread I can no longer find, we discussed this and someone said it is from the cerebral perfusion. That makes sense to me because it only seems to happen when I feel particularly like I have no blood in my brain. I learned the early warning signs and try to correct my blood distribution and shut my mouth.

[SarahA33]

Hi Mike,

I do wonder along with Targs about the excess stress hormone production. I know in my case, if I suddenly panic, feel overly excited or fearful of something I can immediately feel an excess of adrenaline kick in. I think for most people without an overproduction, they recover fairly quickly from an event that would trigger some type of emotional excitability. I can physically feel the effects of it for a while sometimes, tremor, increased sweating/flushing, difficulty thinking, etc. That fight or flight response is really relevant in my world.

I also plan walks like yours, but mine are usually trips to the mall Anyway, I told my therapist about the thought processes and she told me that in my case that may be my way of having control over a situation where I have none. It's gotten better for me, especially since I realized I do it more in unfamiliar places. I'm just sorry that you are going through a rough patch. We are here for you, and I know that your partner is as well. She sounds wonderful, and I'm sorry to have read in another post that she has not been feeling well and dealing with some new diagnoses as well. She will be in my thoughts!

Wishing you the best,

Sarah

[targs66]

Thanks, Mike, and everyone else - your thoughts do help. I agree, I can logically think "what's the worse that will happen?" if, for example, I faint or fall. And I feel quite confident that someone out there will help me, and I realize it's not going to kill me. But I still end up in an endless feedback loop, usually at night when I can't sleep, worrying about things that don't merit any worry at all! It's why I think there must be something physical causing this feeling of minor panic over really minimal issues.

Good thread!

[Mikey69]

Hi Sarah

great to hear from you again. Your comments regarding excess stress hormone production are very interesting indeed. i will do some research into this at some point very soon and let you know if i find anything of interest. i am very sorry to know that you have issues with 'fight or flight' response - it must be quite awful for you when it occurs. It seems i too may be experiencing similar at times. I consider myself very fortunate, in that i am a deeply spiritual person - I am very good at deep mediation and relaxation techniques, and i am so relaxed about things i've been told i'm horizontal/asleep, so i tend to just take these things in my stride. However, i would be the first to admit that the Dysautonomia has had a profound impact on my mental well being. I'm pleased to say that i'm getting my confidence back. I'm now walking up to four miles in the middle of nowhere several evenings per week. It has taken me a while to build up to this, and i must admit to feeling concerned/worried/unsettled when i first started doing this again. So i can appreciate your comments.

Your therapists comments are interesting - i wonder how much truth is in that? it's interesting that you experience these symptoms more in unfamiliar places. When i started walking in the countryside again i realized that the further away from home i was the more uneasy i felt. i think this was because i realized that the further i walked into the countryside the more vulnerable i became, because retrieving me would be more difficult if i did need urgent medical assistance. I overcame this by thinking "well whats' the worst that could happen" - i.e. (see above post) - "this thing won't kill me, etc. so just get on with it". It's mind over matter.

Trips to the mall sound like fun. I must admit that i try to avoid shopping malls like the plague! I'm more of a countryside/open green spaces fella, so i keep my energy for the 'great outdoors'.

i can't honestly thank you enough for all of your kind support and comments Sarah. You have been such a big help - as have the other kind souls on here that have responded to my posts :-)

I am a very lucky man Sarah. I have the most amazing partner, she is wonderful!

Her new diagnoses were a bit of a shock to say the least, but she is handling it all very well indeed :-)

Please take good care of yourself Sarah,

I look forward to future conversations with you,

Mike

i walk as much as i can. Although i have very limited understanding of Dysautonomia, as it is still all new to me, I have learnt that keeping physically fit and active is vital to long - term health.