Heart Rate Crash - Feel Like Death

[Foggy01]

Hey,

My standing and resting heartrates seem to have crashed recently. Resting has gone from 90 to 60 and standing from 120 to 90, but I don't feel any better. I feel a lot worse. It seems to be getting lower over time I think. I'm not sure. It's not just randomly some days, it's all the time now and seems to be a permanent change and trend.

I sort of made a similar thread before but I want to ask specifically if anyone has had this ever happen to them. I feel like I'm on a natural betablocker now and don't need any artificial ones. It's like my "sympathetic nervous system" or whatever its called has just decided to not bother compensating anymore and I'm left with fairly normal heartrates but feeling a LOT worse. I serious feel half dead. Even breathing is a struggle now. I have no idea what to do.

Can anyone say they've had a very similar experience or heard of one? I was hyperadrenergic before and now seem to be non-hyperadrenergic but I feel like death. Wish I could have the high heart rate again. I didn't feel so weak and fatigued with it.

[E Soskis]

Instead of high heart rates, I have low rates with multiple rate drops per day - when my resting heart rate dropped and settled on 20-40, I had a pacemaker put in and now, my rate will only drop for a few seconds before the pacemaker kicks in and keeps me at a steady 72. I know that before I had the pacemaker, I was fatigued, washed out, and not able to stand up for long without becoming syncopal or pre-syncopal. I don't know what natural beta blocker you are taking but perhaps, it is contributing to your symptoms? It seems to me that if you used to have high heart rates and now you are having low heart rates, you need to see your physician or cardiologist and let them re-evaluate you. If you feel like death-on-a-cracker, you should at least try to figure out why and maybe even discover something that will perk you up! - Good luck - sorry you are having so many difficulties......

[AllAboutPeace]

I have had the exact same thing and I've posted about it before too. It does feel like my SNS just gave up or possibly burned out. In terms of dealing with it, unfortunately I haven't really found anything that helps this.

What I can tell you is that my body did adapt to the new HR over time. So at first I felt horrible/like death with a high 50's HR, then I felt that way with a mid 50's HR, etc. Now I feel ok with a low 50's HR. It did become my new normal. Now it's the mid 40's HR that makes me feel awful. I haven't been back to my EP since I've noted this trend, so I do plan to discuss it with her. Her appts are really backed up.

My SNS was extremely overactive in the beginning as well, but now I usually only feel those surges when it wakes me from sleep.

It does feel awful and I can totally relate to your description! How is your BP?

[Foggy01]

I have had the exact same thing and I've posted about it before too. It does feel like my SNS just gave up or possibly burned out. In terms of dealing with it, unfortunately I haven't really found anything that helps this.

What I can tell you is that my body did adapt to the new HR over time. So at first I felt horrible/like death with a high 50's HR, then I felt that way with a mid 50's HR, etc. Now I feel ok with a low 50's HR. It did become my new normal. Now it's the mid 40's HR that makes me feel awful. I haven't been back to my EP since I've noted this trend, so I do plan to discuss it with her. Her appts are really backed up.

My SNS was extremely overactive in the beginning as well, but now I usually only feel those surges when it wakes me from sleep.

It does feel awful and I can totally relate to your description! How is your BP?

We seem to have a lot in common you and I.

My BP doesn't seem to have changed with the new lower heartrate which is strange. It seems to change around a lot, sometimes it's 115/70 or 115/90 or 140/80. I dunno. I can't make sense of it.

The heartrate is really the only thing I can correlate with how I feel. It just suddenly started dropping in July from its previous highs of 90-120. It had been 90-120 for years and then suddenly this change. It's no coincidence I think that I started to feel a lot worse at the time. My body doesn't seem to have adjusted to it at all to be honest. I feel worse with each passing month. It's 60-90 now and I feel deathly. I dunno how I can go on like this. I'm glad you were able to get used to it. I'm finding it hard, especially because I keep feeling worse.

The doctors keep saying it's good that my heartrate is down now. :-P They don't seem to appreciate I feel worse than I ever did when it was up high. I've been doing an exercise programme for a few weeks but I doubt it has made my heart much stronger. It certainly hasn't made it so strong it needs to beat 30 times less than before! My SNS just doesn't seem to be compensating anymore. As you said, it's almost like it just burnt out.

[Foggy01]

Instead of high heart rates, I have low rates with multiple rate drops per day - when my resting heart rate dropped and settled on 20-40, I had a pacemaker put in and now, my rate will only drop for a few seconds before the pacemaker kicks in and keeps me at a steady 72. I know that before I had the pacemaker, I was fatigued, washed out, and not able to stand up for long without becoming syncopal or pre-syncopal. I don't know what natural beta blocker you are taking but perhaps, it is contributing to your symptoms? It seems to me that if you used to have high heart rates and now you are having low heart rates, you need to see your physician or cardiologist and let them re-evaluate you. If you feel like death-on-a-cracker, you should at least try to figure out why and maybe even discover something that will perk you up! - Good luck - sorry you are having so many difficulties......

God that sounds awful needing a pacemaker. Glad you caught the problem and got a good solution for it. Sounded serious if it was going into the 20s.

Btw I just meant it feels like I'm on a natural beta blocker. I meant it's almost like I am taking a beta blocker but I'm not! It's really strange. But it seems others have this issue as well like "AllAboutPeace". The heartrate seems to go lower than it should for you to remain feeling normal. I feel worse with this low heartrate than I ever did with a high one.

Anyway thanks for the advice. I really should get reevaluated. Trouble is finding a doctor that might have some clue. Dunno who to turn to. I don't really have a doctor with any expertise anymore. The one I'm going to right now is really just following my lead. I've been reading the research (Levine's research) and leading the charge with my exercise regime. He's really just in the back seat. He probably would just say it's a normal heartrate and not recognise that it's actually making me feel worse than a high one. My family physician and my old doctor think it's a "good" sign that my heartrate is lower. They don't pay attention to feelings I guess. If only there were some objective number to show how worse I feel, then they'd see the low heartrate is not a blessing at all.

[CarrieJessica]

I had 24 hours where I never went above 40, they monitored me at the hospital but eventually released me. The irony was the release papers said to come back if I was below 50... I was 48 when they discharged me.

[Foggy01]

I had 24 hours where I never went above 40, they monitored me at the hospital but eventually released me. The irony was the release papers said to come back if I was below 50... I was 48 when they discharged me.

How bad did you feel during this episode? What did you feel exactly? I feel awful all the time now.

[CarrieJessica]

I was very tired. At the low (I think 32) I felt like I was really sick and slept a lot. The docs didn't seem too concerned, they just monitored me. I was actually afraid to fall asleep because I thought I'd go into a coma. Apparently this was not a real issue but it scared me none the less.

[spinner]

keep hydrated. And be careful with overmedicating.

[POTSdad]

My daughter says it feels like her heart and head is going to burst. Her resting heart rate lying down is 46, and her BP is 107 over 64.

Should we seek medical help soon? She will see her cardiologist/Pots specialist in 3 weeks, but I'm not sure if we should wait. She is taking 0.075 florinef per day, no beta blockers, and as much salt and water as she can handle. Any suggestions of what we should talk to the cardiologist about?

It has been worst this month than before. It gets really bad for a few days every menstrual cycle. For the last 36 hours she has been so potsy, that she can not walk.

Any input would be much appreciated. Thanks.

[corina]

POTS dad, when you are worried you best check with her doctor. S/he knows best when immediate help is needed. Maybe give him/her a ring? Hope she will be doing better soon!

[arizona girl]

Pots dad, also I'd make a new post with your question. You will get more responses, as your post is sort of buried in this old one.

I agree with corina, the doc needs to be involved on this one. It could be something as simple as she is no longer requiring as much florinef because she is improving and it is lowering her to much.

I've had those low readings at times as well and that is when I feel at my worst. That is hypotension, not pots and for me can trigger syncope or near syncope, which will happen to me under certain situations. Mine happens rapidly however. I called them my episodes, they caused dramatic symptoms and collapse, nausea, clamminess, cotton ears, loss of vision and melting to the floor. I would recover after my body reset on the ground. Staying down till recovery is a must.

Have they ruled out other underlying causes for your daughters autonomic dysfunction? I have several potentional causes. A skin biopsy diagnosed small fiber autonomic autoimmune neuropathy. By treating my underlyers I've had some improvements. I know she is of the age group that your probably being told she will grow out of it. I hope so! There are many of us for which that is not true. I'm now in my 50's and had symptoms as a child. Only in the last five years was I properly diagnosed and now improving with proper treatment.

It is so wonderful that she has you as her advocate. It is hard I know, but that is what she needs from you. You keep fighting for your girl! We should all be so lucky to have a father that cares so much.

If you can get to the bottom of this while she is still covered by insurance, that is really important. It took me years to get diagnosed partly because I had no health insurance.

[bustersacc11]

I got sick back in 2007. The first thing I recall was slow heart rates. Never checked my heart rate before I got sick because I never had the need to. I noticed that I lived in the 40-50’s and occasional dip to 30s at night. I was dealing with trying to find answers to this dysautonomia and heart rate issues. I had no idea what the heck was going on. Do I or don’t I need a pacemaker. All the docs were very squeamish about putting one in. I was very lightheaded, dizzy, slow heart rate, but high-normal blood pressures. Since I had no structural or mechanical issues with my heart and just slow heart rates with no other abnormal rhythms they could not reassure me much benefit from a PM. Most people with just a slow heart rate really feel lousy when their heart rates stay in the 40’s or less usually accompanied by low blood pressure or when their HR’s are slow and won’t increase with activity. But I understand everyone is different. those people really benefit from pacemaker placement and they dont have dysautonomia. I was desperate and bit the bullet and got a pacemaker. Demand rate at 60. Abolished bradycardia and still feel lousy. Dysautonomia wins! More of my symptoms are related to this syndrome / ANS malfunction. Can’t blame it on the slow heart rates anymore.

Sorry there is a point to my reply.

I am hyperadrenergic subtype. I go through the same thing you are experiencing. These dreadful waxing and waning periods with my symptoms. We go through these terrible spells and I am the first to admit the only thing that I can do when I talk to someone is make the correlation with a blood pressure and heart rate and my symptoms at the time. Cause I don’t know what else to do. I am not by any means discounting that you don’t feel good right now but those are really good heart rates and if your blood pressure is solid with those numbers even better.

You point out directly and indirectly that your fatigued, tired, fatigued breathing, feel like death. Also, that you have been exercising. I have read a lot of posts about exercising on this website. I encourage it and strongly agree that exercising whether you have dysautonomia, recovering from surgery, or whatever chronic issues you may have exercise can be helpful. Conversely, there is a delicate balance when it comes to us and maybe you have over did it. I don’t know. Pure spectulation on my part. Aside from the numbers you know how you felt before and these are your symptoms now. I hope you can get in to see someone and get to feeling better or this spell will pass. Best! I know it stinks.

[spinner]

Breathing--sleep apnea? Hydrated? Deficiency? Parasites? Asthma? Digestive issues?

If you dont get a medical diagnosis soon, klonopin has helped me with this problem, used carefully

when i get an attack. It seems to ease the nervous systems.

Are you already on meds? Perhaps a wrong combnation.

Also research Dr. Cheneys research in fibromyalgia, some people have been helped with

your symptoms with his med combo involving doxepin.