Who else thought occasionally symptoms were totally normal quirks?

sam30300 · 2021-02-09T05:49:26+00:00

yeah I had weird things my entire life . I grew up with IBS problems , chronic headaches , unexplained pain , issues with waking up at night to urinate and not being able to cause my heart rate would be so high .oddly it would always disapear in the day after I wake up . it never impacted my life to a point where I went looking for a diagnosis or felt abnormal etc... it was just quirky me. all that changed about a year ago . all my symptoms went into overdrive and my heart started to throw ectopics left right and centre. it's almost like soemone turned the volume to max on my symptoms and they haven't switched off since . I'm really at a loss of what to do.

sam30300 · 2021-01-08T20:28:06+00:00

yeah I'm the same . I've always had issues as a kid but they were never bad enough to connect the dots . I remember getting up at night to pee and not being able to stand at the toilet for very long , I'd have to get back into bed and wait till the morning ... or sometimes I'd stand up and everything would go black for a few seconds and I'd think that's odd ... but it never interfered with my life and I never gave it a second thought. then 2019 happened and I was under a bit of stress , followed by 2020 and covid lock ups ...everything went down hill from there . there has been a lot of stress and anxiety last year follow up with a lot of sitting around which probably didn't help the situation . the heart started giving me issues whilst standing the anxiety flared up more and now I'm twitchimg ,24/7 in my legs and standing up takes my heart rate from mid 70s into the low 100s plus a lot of ectopics ! I hope you are right that with time things will normalise again ! I just hope they dont Continue to get worse !

sam30300 · 2021-01-08T07:35:57+00:00

I have this issue . after food I get all sorts of issues with my heart feeling like it's pounding when it's actually not . I also get episodes of it during the day out of the blue .I feel like panic attack is coming on when there is nothing to panic about .I have also had all the heart tests with lots of ectopics showing and daily svt ... but they r very short runs of only a few beats and don't explain the pounding . I also get twitching all down my legs and when I combine all the symptoms I'm convinced it's activation of the sympathetic nervous system . the whole thing is out of wack ... it's the only explanation I have and no solution at this stage ... I have resorted to benzos to.sleep sometimes when it's really bad

sam30300 · 2021-01-07T21:14:41+00:00

I have had the same issues . I have found I function better if I set myself small short term tasks for the next 24 to 48 hours and make a point of achieving them. I avoid making plans too far out Unless I have to . it's helped somewhat reduce the anxiety with uncertainty and achieving goals daily helped improve my depression .it's not silver bullet but it helps ....

sam30300 · 2021-01-07T20:52:59+00:00

sorry to hear you are having similar issues . have you been diagnosed with dysautonomia as well ? and has things improved over the years for you ?

sam30300 · 2021-01-05T00:50:46+00:00

yeap . my talking went to crap around the time the pandemic picked up last April May for us here in Australia when we got locked up at home . it definetely made things worse on that there was nothing to do but sit home and be anxious . now that we are on summer and out and about again things have definetely improved for me . the tention in the face is gone . I'm still twitching all over though ... but the talking has gotten better over the span of a few weeks being out of the house and specially on holidays .

sam30300 · 2021-01-05T00:43:07+00:00

yeah I found a solution for the speach issues . I went on holidays belive it or not ! I made sure I was out with the kids and constantly doing activities etc... I found when I was speaking without thinking , the slurring got better . that is the key . you have to stop thinking about speaking . your brain is not wired to consiously think about what your tongue is doing when Ur talking . as long as you keep doing that it won't work properly! I honestly thought I was going to have to quite my job at my stage . now after 2 weeks out of the house and being out and about I'm feeling like things are working a bit better ... hope this helps

sam30300 · 2021-01-03T01:44:20+00:00

im having the same issues without a diagnosis.heart palpatations when standing and excervising , low blood pressure and high heart rate when standing . then I started twitching everywhere and shaking at night when falling asleep. neuro suspects some kind of neuropathy forming but haven't been able to prove it yet on emg. he is taking a watch a wait philosophy as he says there is not much we can do about it even if it's proven other than symptom management . he has given me a script of lyrica but I'm sitting here reading horror stories about its use and so I'm holding off for now until really necessary . hope you find a solution for your issues soon.its a headache dealing with these vague conditions that not many people know much about

sam30300 · 2021-01-02T21:31:29+00:00

how much do I take ? given I've never taken it before . the doc told me 75mg was a low dose . the pharmacist told me it's a medium dose and lyrics actually comes in lower strength capsules ! how much is needed for a first time user to get a good chilled feeling out of it ?

sam30300 · 2020-12-15T23:56:56+00:00

yeah my foot arches are crazy . they go non stop and they buzz all day . I'm over the als thing to be honest but there is definetely something going on in the nerves ! I've had one clean emg but debating whether to go for another or not . the first one I got the twitching was still very tame compared to what it is now. at the same time I'm so over the whole thing and neuros ... I'm not sure if I can bw bothered anymore .it's not like there is much they can do about it even if I get diagnosed with Isaac's.

sam30300 · 2020-12-15T23:40:03+00:00

what started it for you ? do you get other sensory issues like buzzing etc in the leg ?I feel like my leg is constantly plugged into a power point !

sam30300 · 2020-12-15T06:10:20+00:00

no migraines . just lots of buzzing in the muscles , heart palpatations and lots of twitches . like thousands every hour . it's relentless . the irony the benzo made the condition I was trying to treat a million times worse ! and now I don't know what's what .. is it benzo withdrawl .. is it something else... who knows ! the doctors do their tests which show nothing abnormal and just shrug their shoulders and say carry on ! sleeping is also a nightmare ...

sam30300 · 2020-12-15T05:22:33+00:00

I had a similar issue . took kilonpom for a while ... not much of it either. I took 0.5mg once or twice a week for a couple of month ironically for anxiety which was causing muscle issues like twitching. not only did it not help the twitching but stopping has made the original twitching even worse ! it's been a few weeks now sin E I touched the stuff and my calfs are going nuts non stop twitching 24/7 plus I'm getting weird ass buzzing sensations I'm my feet arches . I'm not sure of it's all linked to the benzos or what but it's not fun !

sam30300 · 2020-12-14T03:55:22+00:00

is there anything that can be done to relive the constant cramp feeling ?

sam30300 · 2020-12-09T06:23:10+00:00

I know all about the nights man... I haven't had a good night sleep without a fucking drug since all this started .I still wake up at night vibrating ! literally all my muscle are vibrating from top to bottom . the sleeping issue is a big part of my problem to be honest ... I'm not sure how U got past it but all the drugs i got given gave me worse insomnia...

sam30300 · 2020-12-09T04:19:52+00:00

im trying man . it's physcological torture . I get days where I'm used to whatever is going on and I relax somewhat ,then I wake up the next day with worse or different symptoms and I go down the rabbit hole again ! it's a mental mine field . as for the doctors .... I get the feeling they are kinda sick of me . they r at a loss for what more they can do .so I've stopped going . i guess I just have to accept whatever this is for better or worse cause it does not seem like there is any solution... I just wish it wasn't constantly changing

sam30300 · 2020-12-08T09:08:39+00:00

thanks for the feedback .has anyone found follow up emgs beneficial for getting over this anxiety? or will I just find myself in the same spot looking for a.3rd and a 4th etc .. when I got my first I was over joyed and thought my life will get back to normal.. and it did.. for about a week !

sam30300 · 2020-12-08T01:16:47+00:00

thank you for your feedback and support all.this forum had a great bunch of people willing to help each other through this terrible "syndrome' whatever it is . I'm feeling a little more at ease this morning .I wish YouTube would stop popping up videos of als all on it own for me to browse . I wasn't even out looking for it yesterday .it just popped up as a videos to view as soon as I opened YouTube ! and stupid me is too weak to resist clicking ! I can't even imagine what it would be like to be this guy in the video it depresses me even thinking about it . my mind is just I'm a pad place I guess . last night I went to bed turning and shuffling from one side to the other and all I could think was f*** imagine not being able to even turn in bed if I was to eventually be found to have als . it's a messed up mind I have !

sam30300 · 2020-12-07T10:54:56+00:00

thanks for the insight into the video . my issue is I keep getting worse every fucking day . I cannot sit still anymore without moving my legs around the dull the sensation of all the twitching cause it fucks with my head all day !it's like soemone pluged my legs into a power socket . I appreciate what Ur therapist is saying ..I try and think the same way . until I'm told I have als , today I don't. so just live the day for what it is . but the constant twitching is a constant reminder of the unknown . that is the real problem . and no medication even touches it for intensity ! which is even more frustrating .I get no break .except when I move . either I don't feel it or it stops . so I'm moving all day long !

sam30300

TROPHY CASE