Crashes.

[CallieAndToby]

So I've been talking with a friend on the phone and I've been in a crashed state for 2 weeks, can't sleep either. So I just had to tell him I can't chat, at all. Then today I tried to watch an interview on YouTube and half way through I crashed. I don't know what to do any more and being left to my thoughts all day is not going well for me and my psychologist says that with people with OCD and depression related to chronic illness they tell them to distract themselves but I can't do anything. I went from being a working musician in my teens and early 20's to just getting worse and worse and now I can't leave the bed or listen to music. Saline iv's would help but I don't even have an autonomic doctor of any kind. Do you guys get these neurological + physical crashes after very minimal mental or physical exertion? Last year I could swim but after 30 minutes of swimming I'd be stuck in bed for days recovering so exercise is something they always tell POTS patients to do but it makes me worse. I know it's called "post exertional malaise" but it's just terrible. 

[Pistol]

@CallieAndToby22 - yes, I can relate. Until recently i was unable to be active, could not even do minor house work and could not be on the phone/watch TV/do computer work etc for any length of time at all. Anything pushing me over my limit ended up with me in bed, ear plugs in ears. Diltiazem and Carvelidol helped with the HR and BP, Ritalin gave me about 2 hours of energy in the morning and SSRI helped with fatigue to a degree. What has helped the most are weekly IV fluids and ( recently ) Plaquenil. I have been on the Plaquenil since January ( for joint pains and POTS ) and it has given me tremendous energy. I can be active now, do chores ( even gardening!!!! ) all day in increments, with rest in between. I do not get worn out by the slightest activity and feel so much more normal. And the added activity in turn stabilizes my HR and BP. I honesty feel the best I have since onset of POTS 11 years ago! And:we are halfway through 2021 and I have not had a single syncopal event or seizure!!!!!!! 

I hope your docs will be willing to experiment with fluids or different meds, like mine did. I had begged to try Plaquenil for years but the rheumatologist refused, he wanted me to take Prednisone, which made me crash. So my autonomic specialist ordered it for me, keeping in mind that there is new evidence out that POTS is auto-inflammatory in nature in many cases. Of course it is not covered by insurance ( FDA approved diagnoses are RA and Malaria ) but it is cheap. 

Wishing you the Best !

[cmep37]

10 hours ago, CallieAndToby22 said:

Do you guys get these neurological + physical crashes after very minimal mental or physical exertion? Last year I could swim but after 30 minutes of swimming I'd be stuck in bed for days recovering so exercise is something they always tell POTS patients to do but it makes me worse.

When I had my first major crash (that lasted 2 years of me being bedbound) I could do nothing without feeling awful afterwards - making a phone call, watching a TV programme, folding laundry, even cleaning my teeth was sometimes enough to set me off!  I had no diagnosis at the time apart from ME/CFS and fibromyalgia - 10 years later it turned out I actually had hEDS and POTS.  I realised I was stuck in a cycle of doing too much, recovering, then doing too much again - the problem was that my "too much" was everyone else's hardly anything at all!  I worked out what I could do without triggering a reaction - it was hardly anything at all, maybe watching a very easy (ie non scary or loud) TV programme for 5 minutes, cross-stitching for 10 minutes etc and built from there.  I made sure I did the same thing every single day for the same amount of time.  In terms of exercise I had to start from very, very little - maybe 10 leg lifts twice a day and gradually build it up - I now manage an hour's physio every day without problems but I don't do well with 2 hours one day and none the next!  

[Pistol]

2 hours ago, cmep37 said:

I realised I was stuck in a cycle of doing too much, recovering, then doing too much again - the problem was that my "too much" was everyone else's hardly anything at all! 

@cmep37 this so accurately describes what it is like! The exact same thing happened to me: do a bit, realize it was too much, recover with rest and when feeling better start this same scenario all over again! But thankfully - as you - I have found a way ( with medications, treatments and strictly following my limitations ) that I now know what I can and cannot do, and by listening closely to my body I can avoid flares for the most part!

[CallieAndToby]

11 minutes ago, Pistol said:

@cmep37 this so accurately describes what it is like! The exact same thing happened to me: do a bit, realize it was too much, recover with rest and when feeling better start this same scenario all over again! But thankfully - as you - I have found a way ( with medications, treatments and strictly following my limitations ) that I now know what I can and cannot do, and by listening closely to my body I can avoid flares for the most part!

Thanks guys. The problem is I don't have an autonomic doctor or really only 2 doctors and I've become too sick to go to appointments at least at the moment. My new PCP is in another city and that trip 1 1/2 months ago has totally wiped me out. Then my local neurologist is content with having referred me to Vanderbilt 11 months ago and in the mean time he doesn't do anything. Beverly Karabin can't do telemedicine out of state any more so..... I would love saline iv's I just have nobody to prescribe them and I have only 2 accessible veins. For me when I'm this crashed I have extreme trouble sleeping, vicious cycle every day. I'm glad you found the right stuff to help @Pistol . I definitely could use the saline iv's it's just always been refused to me in my city b/c they don't want to deal with ports and infections, etc. 

[cmep37]

I've never found any doctors to help me either @CallieAndToby22.  I've seen who passes for the autonomic expert in my area and he has admitted he has no idea what to do with me as I've gone beyond his level of expertise.  Last summer my GP sent my Holter monitor scans to him when I was severely bradycardic and he just wrote back saying it wasn't life-threatening!  He won't prescribe IV infusions as he says they are too high risk re clots/infections.  He is an EP cardiologist and to be fair he did take my case to a multi-disciplinary conference about 18 months ago but no-one there made any useful suggestions either - they just suggested I have CBT to cope with living with a chronic illness!  My GP said I could probably give CBT myself I have had so much experience of learning how to cope!  I am considering seeing a US consultant via Skype or Zoom as I certainly have exhausted all other options but it's not ideal if I need to ask further questions or I have side effects from any meds prescribed.

[CallieAndToby]

2 hours ago, cmep37 said:

I've never found any doctors to help me either @CallieAndToby22.  I've seen who passes for the autonomic expert in my area and he has admitted he has no idea what to do with me as I've gone beyond his level of expertise.  Last summer my GP sent my Holter monitor scans to him when I was severely bradycardic and he just wrote back saying it wasn't life-threatening!  He won't prescribe IV infusions as he says they are too high risk re clots/infections.  He is an EP cardiologist and to be fair he did take my case to a multi-disciplinary conference about 18 months ago but no-one there made any useful suggestions either - they just suggested I have CBT to cope with living with a chronic illness!  My GP said I could probably give CBT myself I have had so much experience of learning how to cope!  I am considering seeing a US consultant via Skype or Zoom as I certainly have exhausted all other options but it's not ideal if I need to ask further questions or I have side effects from any meds prescribed.

I'm sorry to hear all of this! Are you in the UK because I have a lot of friends with chronic illnesses like ME in the UK and they're constantly being told to do CBT and not getting the medical help they need, it makes me mad, but sadly things in my particular city and not any better. I was treated as a psych patient for a decade and it really messed me up. The problem with dysautonomia is it's just rare and hard to understand and complex and there aren't many doctors here either or centers of excellence. I wish I knew who to suggest for you. I think they should do saline iv infusions without a doubt for most of us, I have read article after article from prominent autonomic doctors like Dr. Rowe who say saline iv's are the best options or refractory POTS and I can tell you first hand they help me a lot and they even help me to sleep. I can't even wear the compression stockings b/c the climate I live in is so hot but I have found the abdominal binder to be very very helpful and if you want to know the brand, send me a pm. Someone told me about the correct one on FB and it's been wonderful and so easy to put on and off. 

[CallieAndToby]

I haven't slept much in 2 weeks. 

[cmep37]

On 5/24/2021 at 8:26 PM, CallieAndToby22 said:

Are you in the UK because I have a lot of friends with chronic illnesses like ME in the UK and they're constantly being told to do CBT and not getting the medical help they need

Yes I am in the UK - the doctors are obsessed by CBT here!  About 15 years ago when I was still misdiagnosed with ME/CFS my GP suggested it to me and I did about 4 sessions. To be fair I did learn some useful things like pacing, sleep hygiene and mindfulness but in no way was it the cure that it was touted as!  The effort of getting to and participating in the session meant I flared for days afterwards so I made the decision to stop.  Before I was diagnosed I had seen 12 different GPs, 2 gynaecologists, 2 rheumatologists, 1 dermatologist, 1 neurologist, 1 gastroenterologist and a clinical psychologist and none of them could have ever heard of POTS as I had all the classic signs and symptoms when I saw them yet none of them ever suggested it as a diagnosis and since being diagnosed I have seen 2 GPs, 3 cardiologists, 1 rheumatologist, 2 gynaecologists and 2 gastroenterologist and only 2 cardiologists and the gastroenterologist knew what POTS was!  What is worse is that few of them showed any interest in learning about it.  It scares me that many people in the UK are still undiagnosed/misdiagnosed because doctors haven't heard of this illness.

Thank you for the tip about abdominal binders but I've tried abdominal compression before and it makes another problem I have much worse - I always retch until i vomit if I stand for more than 5 minutes or walk more than about 200m because my vagus nerve gets stimulated by my increasing HR and if I use abdominal compression this happens even faster.  I do wear compression tights that only have compression in the legs and I do find them helpful although I know what you mean about wearing them in the heat!