HCD77 Posted June 12, 2020 Report Share Posted June 12, 2020 Hi Everyone! I’m a newbie I probably have had parts for a long time though but it’s progressively gotten worse now I’ve been on a disability for nine months and didn’t even know what I had it seems like I have some good days but it’s getting worse and my mornings are awful. I can see having symptoms when I am standing but I have horrible symptoms for hours after I lay down where I am fatigue SOB and chest pain. I even thought of going to the ER this morning. I hung in and they got better in a couple of hours where I could get out of bed. Does anyone have the same symptoms shortly after getting up and then laying down where laying down you still have them? Also I wake up in the middle of the night several times with nightmares and then high heart rate. I thought this was a SVT . I was diagnosed SVT and even had a cardiac ablation. I had POTS misdiagnosed and SVT misdiagnosed for years thinking it was anxiety. Does anyone have waking up with high heart rate? I know these are a lot of questions to ask. I’m just lost Thank you 😃 Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 13, 2020 Report Share Posted June 13, 2020 11 hours ago, Lisa C said: Also I wake up in the middle of the night several times with nightmares and then high heart rate. I thought this was a SVT . I was diagnosed SVT and even had a cardiac ablation. I had POTS misdiagnosed and SVT misdiagnosed for years thinking it was anxiety. Hello @Lisa C - I am sorry you are so unwell. The nightmares and high heart rate during the night could be from elevated norepinephrine ( adrenaline ) levels. This used to happen to me, I have HPOTS. In my case this happened because my adrenaline levels did not go down during sleep as they do for normal people. After about 3 hours the levels are supposed to drop to allow deep sleep, if they don't we either wake up or have light, restless sleep - nightmares and tachycardia can be a symptom of that. Feeling worse in the mornings is also typical for that - your body did not regenerate with restful sleep, therefore getting up is very stressful and can trigger our symptoms. About the tachycardia - do you have a wrist watch that displays your HR? If not maybe you could count your pulse when this is happening. Otherwise maybe you can ask your doctor about a halter monitor? Also - what meds are you taking for your POTS? It could be that you might benefit from a beta blocker or possibly an increase of any meds you are taking? Have you mentioned any of this to your doctor? -- It could be a flare, which commonly happens to me during the warmer months of the year. Avoiding sun, extra fluids and salt and wearing compression hose can help, otherwise rest in a cool house, eating 6 small snacks rather than big meals and scheduled but very mild supine exercises to strengthen core abs and legs can help. I wish I could give you better advise but at this time I guess it would be important to rule out recurring SVT and - if that is ruled out - consider a POTS flare. That means simply doing the above things and waiting it out ( I know how frustrating and depressing that is ). Best of luck 😗!!!!!!!! Please let us know how you are getting along. Quote Link to comment Share on other sites More sharing options...
p8d Posted June 13, 2020 Report Share Posted June 13, 2020 @Pistol is correct. She’s wise! On the advice of my dysautonomia neurologist I have found that drinking 8-16 ounces of water about 15 minutes before getting out of bed helps with morning dizziness and everything else that follows—tachycardia, shaking, tremulous etc. When I was at my worst I drank a liter of water and took a few salt capsules. The theory is that it increases the blood volume which you have lost overnight. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 13, 2020 Report Share Posted June 13, 2020 18 hours ago, Lisa C said: I was diagnosed SVT and even had a cardiac ablation. I had POTS misdiagnosed and SVT misdiagnosed for years thinking it was anxiety. A cardiac ablation could possibly have added to the problem. This is a question for me as well as I have Afib as well as dysautonomia and have been looking for information on how ablations affect the autonomic nervous system in the heart. I posted here about this recently. There are autonomic ganglia in the heart and these cannot be avoided during an ablation and this may be why some patients are prone to tachycardia after an ablation. This is just one thought. 23 minutes ago, p8d said: On the advice of my dysautonomia neurologist I have found that drinking 8-16 ounces of water about 15 minutes before getting out of bed helps with morning dizziness and everything else that follows—tachycardia, shaking, tremulous etc. When I was at my worst I drank a liter of water and took a few salt capsules. The theory is that it increases the blood volume which you have lost overnight. My autonomic specialist told me the same thing except that he advised drinking about 650 ml of an electrolyte solution before ever getting out of bed. This has been helpful to me. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted June 13, 2020 Report Share Posted June 13, 2020 Even during periods of other improvements, mornings have remained terrible. I wouldn't call them nightmares, but I have up to several dreams every night and always wake up in sort of a tremble. I've considered the adrenaline from the dreams as Pistol mentioned to be a cause of this. Also noticed when I wore a tracker, my heart rate would spike while sleeping. Waking muscle pain/burning/cramps are anywhere from "I can't move" to "how the h*** am I still alive", but generally get better once I'm up for a while, after I've had some electrolytes and morning meds/supplements. Mornings are always consistently the worst part of my day though. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 14, 2020 Report Share Posted June 14, 2020 Mornings are the worst for me too. I think it just goes with the territory. Quote Link to comment Share on other sites More sharing options...
Nin Posted June 14, 2020 Report Share Posted June 14, 2020 Morning's are bad for me too. I just wake up feeling rubbish everything morning. After a coffee (which seems to help me) I feel like I can function a bit better, until I start pottering and back to square one again. So I lay down and just feel terrible still. I think if I lay I'll feel better and I can get back up again. I just lie there thinking well if I can't even lie without feeling so bad what do I do! Quote Link to comment Share on other sites More sharing options...
HCD77 Posted June 15, 2020 Author Report Share Posted June 15, 2020 On 6/13/2020 at 5:47 AM, Pistol said: Hello @Lisa C - I am sorry you are so unwell. The nightmares and high heart rate during the night could be from elevated norepinephrine ( adrenaline ) levels. This used to happen to me, I have HPOTS. In my case this happened because my adrenaline levels did not go down during sleep as they do for normal people. After about 3 hours the levels are supposed to drop to allow deep sleep, if they don't we either wake up or have light, restless sleep - nightmares and tachycardia can be a symptom of that. Feeling worse in the mornings is also typical for that - your body did not regenerate with restful sleep, therefore getting up is very stressful and can trigger our symptoms. About the tachycardia - do you have a wrist watch that displays your HR? If not maybe you could count your pulse when this is happening. Otherwise maybe you can ask your doctor about a halter monitor? Also - what meds are you taking for your POTS? It could be that you might benefit from a beta blocker or possibly an increase of any meds you are taking? Have you mentioned any of this to your doctor? -- It could be a flare, which commonly happens to me during the warmer months of the year. Avoiding sun, extra fluids and salt and wearing compression hose can help, otherwise rest in a cool house, eating 6 small snacks rather than big meals and scheduled but very mild supine exercises to strengthen core abs and legs can help. I wish I could give you better advise but at this time I guess it would be important to rule out recurring SVT and - if that is ruled out - consider a POTS flare. That means simply doing the above things and waiting it out ( I know how frustrating and depressing that is ). Best of luck 😗!!!!!!!! Please let us know how you are getting along. Quote Link to comment Share on other sites More sharing options...
HCD77 Posted June 15, 2020 Author Report Share Posted June 15, 2020 I went for a follow up after ablation. My electrophysiologist was really sarcastic when I told him I thought I had POTS and thought I had it for years. He told me he didn’t want to see the data from my Apple Watch if it didn’t show heart waves. He told me to increase salt , fluids and elevate my bed. I’m already wearing hose. He then said I will see you in a month because you will probably need meds. He then said so I could hear again “It’s always good to have a patient that self diagnoses them self” I felt so down and angry. I live in a small podunk town in West Texas with horrible medical care. I’m following protocol and of course reading everything about POTS and Dysautonomia. I know I have had it for years but just in the last 9 months I have been on a disability where I’m not able to work. Thank you for your info. I am learning so much about a mystery illness I have had for years . I just thought it was anxiety once in awhile , varicose veins, and low blood pressure. It has progressively gotten worse maybe because of being prediabetic. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 15, 2020 Report Share Posted June 15, 2020 47 minutes ago, Lisa C said: He then said so I could hear again “It’s always good to have a patient that self diagnoses them self” I felt so down and angry. I would have said, "Someone has to. Doesn't look like it is going to be you." I went through a ton of doctors and was misdiagnosed for years. Sometimes you have to fight. If he is being passive aggressive, you may need to look for another doctor. I drive 6 1/2 hours to see mine. My local doctors believe POTS and dysautonomia are psychological issues. I live in Orlando. It is my experience that doctors who think like that are the least likely to help you. They don't know what they don't know and they are unwilling to learn. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 15, 2020 Report Share Posted June 15, 2020 9 hours ago, Lisa C said: He then said so I could hear again “It’s always good to have a patient that self diagnoses them self” I felt so down and angry. Huh - @KiminOrlando wins the price for best counter to that!!!! @Lisa C - this is unfortunately very common. Cardiologists rarely acknowledge dysautonomia - and POTS especially - as a real condition. My local cardiologist ( who is awesome and tries to educate himself about POTS, works well with my autonomic specialist and my PCP and now sees several POTS patients ) sees this a lot with his University peers. They refuse to even listen to the subject when it comes up in seminars or conventions - he says they just walk out. I think this is because they only want to treat the heart and the electro-physiology they know - having to take the ANS into consideration requires them to rethink their entire approach to healing. ( BTW - I think most of them think of it as fixing rather than healing, since healing would require them to treat the entire person, not only a body part 😒) I would see an autonomic specialist ( see our physicians list ), most of us have to travel in order to get proper medical care. I myself have to travel 7 hours to my autonomic specialist, but thankfully since I am an established patient my docs and I can reach them via messages rathet than having to show up in person every time ). Quote Link to comment Share on other sites More sharing options...
misseb Posted June 15, 2020 Report Share Posted June 15, 2020 The mornings can be a beast. I drink a litre of salted water before even getting out of bed and give myself 30 mins to wake up and move my arms and do calf pumps before getting out of bed. I also have to be very very careful what I eat after 4pm. It's as if I have a BP crash hangover if I eat even the smallest of meals late, and grains and carbs are an enormous no no. 'Dinner' will literally be a few nuts. If I eat too late I can sleep for up to 12 hours almost passed out, and am then a fatigued wonky stumbling mess the next day - which really is a bed ridden write off. Maybe worth looking at your evening meal and seeing if changes can be made to it etc. Please just ask this forum things when you are struggling. It can be so scary and isolating. But you are not alone. x Quote Link to comment Share on other sites More sharing options...
Machair Posted June 16, 2020 Report Share Posted June 16, 2020 I can honestly say that yes mornings are a complete nightmare and I also agree with misseb about evening meals. I have come to the conclusion that eating after 5pm is pointless as it leads to a very poor night and worse morning symptoms. I think the stomach needs to be completely empty or it competes with other systems for blood. Imagine eating a massive dinner- you feel dreadful right? but even some smaller meals eaten too late or eaten at stressful times can be very difficult. I know this as I will forget and eat dinner and dessert and then wonder why I can't sleep and then wake up worse. It doesn't stop the issue though as after a long night of sleep I am like a Zombie and it is dreadful. Heat makes everything worse and we have a heatwave here in the UK just now. Anyone got any tips about the best sleeping position? - I heard lying flat is not recommended as it worsens symptoms in the morning. Quote Link to comment Share on other sites More sharing options...
Pistol Posted June 16, 2020 Report Share Posted June 16, 2020 35 minutes ago, Machair said: Anyone got any tips about the best sleeping position? They usually recommend the elevate the head of the bed, I believe. Personally I do better with the FOOT of the bed elevated. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted June 16, 2020 Report Share Posted June 16, 2020 7 hours ago, Machair said: I can honestly say that yes mornings are a complete nightmare and I also agree with misseb about evening meals. I have come to the conclusion that eating after 5pm is pointless as it leads to a very poor night and worse morning symptoms. I think the stomach needs to be completely empty or it competes with other systems for blood. Imagine eating a massive dinner- you feel dreadful right? but even some smaller meals eaten too late or eaten at stressful times can be very difficult. I know this as I will forget and eat dinner and dessert and then wonder why I can't sleep and then wake up worse. It doesn't stop the issue though as after a long night of sleep I am like a Zombie and it is dreadful. Heat makes everything worse and we have a heatwave here in the UK just now. Anyone got any tips about the best sleeping position? - I heard lying flat is not recommended as it worsens symptoms in the morning. This certainly makes a lot of sense as I usually feel my core heating up with a near exhaustion feeling after larger dinners. It can be freezing out and I'll want to open doors and windows to cool down. Quote Link to comment Share on other sites More sharing options...
HCD77 Posted June 27, 2020 Author Report Share Posted June 27, 2020 Thank you all so much for your feedback !😃 I am newly diagnosed and mornings are better now since I started Midodrine. I see an electrophysiologist here in my town, but I did get a telemedicine visit with a automic specialist on the list. I am very excited. All your feedback and support has really helped. I talk to my new doctor July 1. Thanks again the support here is amazing!! 😃 Quote Link to comment Share on other sites More sharing options...
PotsieCrocheter Posted June 27, 2020 Report Share Posted June 27, 2020 Thank you for your very relatable topics.🙂 I’m so glad the Midodrine is helping! That’s super about the autonomic specialist, I’m ever so grateful for mine. Quote Link to comment Share on other sites More sharing options...
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