Iheartfrogs217 Posted October 20, 2018 Report Share Posted October 20, 2018 Hi all! Lately I have been randomly almost fainting while sitting and laying down. My pulse will suddenly become thready and fast. This has been happening almost everyday and is really scary! I’ve been seeing a lot of doctors and specialists but none of them seem to know what could be causing it. Has anyone else expirenced this before? If so, what do you do to feel better and do you have any doctor recommendations? Thanks in advance! I should also add that I’ve been recently diagnosed with Small Fiber Neuropathy. If you’ve been diagnosed with this too, I’d love to hear about your experience. Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 21, 2018 Report Share Posted October 21, 2018 I have hyperPOTS which causes excessive vasoconstriction. I used to work as a nurse and would frequently pass out and even take seizures at work - even while sitting. This was always preceeded by a brief episode of feeling ice cold and tremors and people who were there always said I would get a blank stare and fall out of the chair. I also have had seizures and syncope while lying in bed ( often in hospital for bad flare ). The seizures are considered convulsive syncope - caused by no circulation in the brain from vasoconstriction. SFN can cause vaso constriction or vasodilation which causes syncope and this not limited to being upright. Are you seeing a neurologist? I would find one that is specialized in ANS disorders. Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted October 21, 2018 Author Report Share Posted October 21, 2018 Hi @Pistol, thanks for your reply! I’m so sorry to hear that you have seizures and faint. These diseases are truly horrible! If you don’t mind me asking, where did you hear that SFN can cause vasoconstriction and dialation? Do you know of any published papers that talk about this? I am seeing a neurologist, but I’m not sure that they are aware of this because they said they don’t think SFN explains the near syncope while being in a nonupright position. However, I don’t think that they specialize in ANS disorders either. Do you know how to find good neurologists that do? Thanks again! Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 21, 2018 Report Share Posted October 21, 2018 Unfortunately I do not know of any neurologists - my symptoms are mostly cardiovascular in nature. - Have you checked on the Dinet physician list? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted October 22, 2018 Report Share Posted October 22, 2018 I do!!! A daily occurance for me for years... My syncope can happen randomly, not necessarily induced by posture changes. Passing out sitting down is normal for me 3-4 times a day right now. On a bad day, or when I can't lay down to recover, it can be 20+ times in a day, especially if I take a shower. Over the last year or so I have not walked or stood longer than a few seconds without passing out. As for laying down episodes, they are more rare but do happen. Two weeks ago in ICU they almost had to use dopamine because i wasn't responding to treatment for my low blod pressure. Ended up giving me a TON of midodrine and keeping me upside down till things calmed down. It can get tricky though because I also go high sometimes. They got to see first hand as I went from a BP of 75/40 to 225/100 in 15 minutes. What finally made the difference was albumin. They were throwing all kinds of fluids at me but without the albumin I couldn't hold onto it. Normally will treat with midodrine, iv fluids, resting reclined or flat, and electrolytes if needed. Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted October 23, 2018 Author Report Share Posted October 23, 2018 @Pistol I have not! I will have to do that. Thanks for the advice! @ANCY Thanks for your reply! I am so sorry that you go through all of those fainting episodes! Did the doctors ever tell you what causes them while sitting and/or laying down? That is what I am currently trying to figure out because it scares me a lot. They don't know what's wrong with me yet and I'm getting a ton of testing, so any advice about testing (etc.) would be greatly appreciated! If you don't mind me asking, why were you in the ICU? I hope you are much better now! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted October 23, 2018 Report Share Posted October 23, 2018 We haven't really gotten further than dysautonomia being the cause of my syncope... Do know deconditioning is a part of why it gets worse for me, especially the sitting syncope, kind of been a downward slide this year with exercise unfortunately... Something that has helped my Drs is bringing in a log of my blood pressures, when I'm having episodes, and heart rate. I don't know of any other kind of testing to be done other than dysautonomia work up. I have a pacemaker so my cardio has at least has some idea of what's going on with my heart in that respect. They have questioned whether I have pure autonomic failure but we're not going there just yet. I was admitted to ICU because I was bleeding and down to a hemoglobin of 5.8 AGAIN, but also had an acute pulmonary embolism that needed to be treated with blood thinners... They wanted to be sure when they put me on blood thinners I wasn't going to bleed out. Then they ended up keeping me a couple more days in ICU because I was having Vtach... Eventually ended up going home, for 6 days, then back again due to bleeding... Menstrual bleeding is the biggest culprit so our hope is with the ablation they just did last week I will stop bleeding to the point of needing transfusions every other week. Obviously all of this has stirred up things so still working on getting back to my baseline. Quote Link to comment Share on other sites More sharing options...
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