Clueingforlooks Posted January 8, 2020 Report Share Posted January 8, 2020 Hey everyone, All of a sudden my adrenaline rushes have got worse again. I haven’t changed meds or anything. Then I’ve started feeling like I just can’t get my body to move, talk and sometimes breathe although I can still technically force myself to do these things. It’s really hard to do anything and is adding to my normal fatigue. I’m confused what this feeling like I can’t move thing is since the first couple years with pots I didn’t have this at all even when I was really ill then. I feel like it’s linked to the increased adrenaline I’ve been having lately but still don’t know why it gets worse randomly. i just want to be able to function at least a little! Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 13, 2020 Report Share Posted February 13, 2020 @Clueingforlooks - sorry for the delayed response. In times that my adrenaline dumps and the hyperadrenergic symptoms exaggerate I avoid stimulation or exercise, I rest and drink plenty of fluids ( in my case I get extra IV fluids, since I have a port and can do it at home myself ). The more you force yourself to function the worse the resulting fatigue will be and the worse the adrenaline rushes will be. I take a lot of medications that help with the rushes as well and recently I started Wellbutrin, which is very effective in helping to keep me from having these adrenergic surges. Be well! Quote Link to comment Share on other sites More sharing options...
Robert J Posted February 13, 2020 Report Share Posted February 13, 2020 I seem to have some sort of dystrophy that comes in in “bouts.” I have two distinct symptoms that can strike separately or together. The first is on overall neuromuscular weakness - not weakness such as I can’t do the neurological resistance test but it’s sooo difficult and just a little activity makes me tired and sore. The second is a kind is slow motion seizure where various muscle groups tense up. I can focus and use mindfulness to focus on a muscle group and get it to relax but no sooner do I get it to release, another muscle group tightened up. Sometimes it is difficult to describe what is happening and I need to observe symptoms so I can accurately report them. As with most weird symptoms, I inevitably find another patients account of something similar. Quote Link to comment Share on other sites More sharing options...
Clueingforlooks Posted February 21, 2020 Author Report Share Posted February 21, 2020 On 2/13/2020 at 10:15 PM, Pistol said: @Clueingforlooks - sorry for the delayed response. In times that my adrenaline dumps and the hyperadrenergic symptoms exaggerate I avoid stimulation or exercise, I rest and drink plenty of fluids ( in my case I get extra IV fluids, since I have a port and can do it at home myself ). The more you force yourself to function the worse the resulting fatigue will be and the worse the adrenaline rushes will be. I take a lot of medications that help with the rushes as well and recently I started Wellbutrin, which is very effective in helping to keep me from having these adrenergic surges. Be well! Thanks for getting back to me. Still struggling unfortunately, feeling really faint like I could pass out but my bp is ok. Had some electrolytes the other day and it made me feel even more nauseous with adrenaline still can’t seem to win. I’m tired of this, nothing I do seems to help. Quote Link to comment Share on other sites More sharing options...
Abe Posted April 29, 2020 Report Share Posted April 29, 2020 Thanks everyone. Reading this, gave me a little bit of a relief from being so scared of these sensations when they start. I never knew that was what I have been experiencing. Few years back, I experienced it everyday and then it seemed to taper off. Now it's back with a bang. I am always confused why. Being okay all day and suddenly my body start shrinking together (tightening up), stomach becomes a mess, struggling to breath, and all sorts of sensations. It's like my body is shutting down. My stress and anxiety level go through the roof. The last few days, I thought I was going to faint (which I am always scared of). All I do is basically stay in bed. I am on Lorazepam so that helps get me some relief. Now that I understand what is causing it a little bit, maybe I'll stop being so scared and just wait it out. Just found out I might have H. Pylori infection two weeks ago. My stomach is burning like fire and that has made things worse. Not sure if that could be adding to or causing the adrenaline rush too. Quote Link to comment Share on other sites More sharing options...
Clueingforlooks Posted March 16, 2021 Author Report Share Posted March 16, 2021 On 4/29/2020 at 9:57 AM, Abe said: Thanks everyone. Reading this, gave me a little bit of a relief from being so scared of these sensations when they start. I never knew that was what I have been experiencing. Few years back, I experienced it everyday and then it seemed to taper off. Now it's back with a bang. I am always confused why. Being okay all day and suddenly my body start shrinking together (tightening up), stomach becomes a mess, struggling to breath, and all sorts of sensations. It's like my body is shutting down. My stress and anxiety level go through the roof. The last few days, I thought I was going to faint (which I am always scared of). All I do is basically stay in bed. I am on Lorazepam so that helps get me some relief. Now that I understand what is causing it a little bit, maybe I'll stop being so scared and just wait it out. Just found out I might have H. Pylori infection two weeks ago. My stomach is burning like fire and that has made things worse. Not sure if that could be adding to or causing the adrenaline rush too. Hi @Abe just wondering how your going with this symptom. It’s worsened a lot for me recently and nothing seems to be helping. Just so hard to move or exist! Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 16, 2021 Report Share Posted March 16, 2021 9 hours ago, Clueingforlooks said: Hi @Abe just wondering how your going with this symptom. It’s worsened a lot for me recently and nothing seems to be helping. Just so hard to move or exist! It's a huge problem for me. The Vasoconstrictors are making it worse. I never feel like I've slept either b/c of it. I have no idea what to do either. I'm sorry. Just wanted you to know you're not alone. Have you had any hormonal imbalances? My testosterone came back really high and it can be a sign of adrenal hyperplasia but I don't have any diagnosis. Quote Link to comment Share on other sites More sharing options...
Clueingforlooks Posted March 16, 2021 Author Report Share Posted March 16, 2021 7 hours ago, CallieAndToby22 said: It's a huge problem for me. The Vasoconstrictors are making it worse. I never feel like I've slept either b/c of it. I have no idea what to do either. I'm sorry. Just wanted you to know you're not alone. Have you had any hormonal imbalances? My testosterone came back really high and it can be a sign of adrenal hyperplasia but I don't have any diagnosis. Sorry to hear, thanks for commenting. I don’t seem to have any hormonal imbalances as I’ve a had full work up of bloods recently. I’ve ruled out adrenal related things too. Quote Link to comment Share on other sites More sharing options...
Abe Posted March 18, 2021 Report Share Posted March 18, 2021 The last few weeks with this phenomenon have made my life so miserable. I don't know what to do anymore. I am close to passing out right now than I ever was since diagnosed with POTS. Anyone found a relief? My medication doesn't seem to be helping. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 18, 2021 Report Share Posted March 18, 2021 Just reading all these posts and weeping. I am having a terrible day and enjoying (ha!) just about every one of the symptoms the rest of you have mentioned. It is so exhausting, so lonely inside a body that is being run amok, and I am really grateful to be able to know that I am not alone in this. So thank you all for sharing your miseries, your fears, your small successes and your experience. Some of these symptoms are indeed strange enough to make me think I must be making them up until I come across a thread like this where I learn that many others have had the same ones. It is nice to have a place to come where I don't have to be brave or show fortitude when all I really want to do is curl up and cry. I feel like I can do that in your virtual company. Thanks! Quote Link to comment Share on other sites More sharing options...
Abe Posted March 19, 2021 Report Share Posted March 19, 2021 Feel the same here. Today will rank as one of my worst days in 5 years and I really feel like giving up but praying that God will spare me tonight. Everything you can think of, is going on in my body tonight and I can barely explain it but I thank God that I have a place like this to come to and offload everything I couldn't even tell my family. Quote Link to comment Share on other sites More sharing options...
Clueingforlooks Posted March 19, 2021 Author Report Share Posted March 19, 2021 I’m with you @Abe @Jyotimy symptoms have been the most uncomfortable I think they’ve ever been the past few months and last few days have been the worst. Sorry to hear that you’re struggling. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 19, 2021 Report Share Posted March 19, 2021 @Jyoti @Abe @Clueingforlooks - whenever the seasons change our symptoms seem to get worse, happens to me every year in the spring and fall. I believe that is due to changes in barometric pressure, which affects the ANS. Unfortunately there is nothing to be done about it other than ride it out and keep positive, b/c eventually you will learn that each flare is followed by going back to "normal". Hang in there and don't despair!!!! 😘 Quote Link to comment Share on other sites More sharing options...
Jyoti Posted March 19, 2021 Report Share Posted March 19, 2021 @Pistol--I appreciate the perspective of your experience, though the reality is not a particularly welcome one! Quote Link to comment Share on other sites More sharing options...
E pots Posted April 19, 2021 Report Share Posted April 19, 2021 On 3/19/2021 at 6:48 AM, Pistol said: @Jyoti @Abe @Clueingforlooks - whenever the seasons change our symptoms seem to get worse, happens to me every year in the spring and fall. I believe that is due to changes in barometric pressure, which affects the ANS. Unfortunately there is nothing to be done about it other than ride it out and keep positive, b/c eventually you will learn that each flare is followed by going back to "normal". Hang in there and don't despair!!!! 😘 This helps. So hard when you're on a flare and your mind is so foggy I can't remember feeling normal Thank you Quote Link to comment Share on other sites More sharing options...
E pots Posted April 19, 2021 Report Share Posted April 19, 2021 On 2/13/2020 at 6:45 AM, Pistol said: @Clueingforlooks - sorry for the delayed response. In times that my adrenaline dumps and the hyperadrenergic symptoms exaggerate I avoid stimulation or exercise, I rest and drink plenty of fluids ( in my case I get extra IV fluids, since I have a port and can do it at home myself ). The more you force yourself to function the worse the resulting fatigue will be and the worse the adrenaline rushes will be. I take a lot of medications that help with the rushes as well and recently I started Wellbutrin, which is very effective in helping to keep me from having these adrenergic surges. Be well! I was taking Prozac but it makes my hair fall out and I wanted to keep my hair. Does welbutrin make your hair fall out? Quote Link to comment Share on other sites More sharing options...
E pots Posted April 21, 2021 Report Share Posted April 21, 2021 On 3/18/2021 at 5:18 PM, Abe said: The last few weeks with this phenomenon have made my life so miserable. I don't know what to do anymore. I am close to passing out right now than I ever was since diagnosed with POTS. Anyone found a relief? My medication doesn't seem to be helping. Do you get any relief from drinking large amounts of fluids? Quote Link to comment Share on other sites More sharing options...
E pots Posted April 21, 2021 Report Share Posted April 21, 2021 I read in a post from someone else that their Mild flavors come last few weeks and the bad ones a couple of months. The way that they deal is to have no stimulation. No TV. Reducing stimulation even putting on sunglasses and noise cancelling headphones. Someone else referred to it as trying to get a big ship to stop and turn around once the adrenalin gets going Quote Link to comment Share on other sites More sharing options...
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