Thoughts On My Recent Improvement/regression

[davecom]

Apologies for the long post...

December was a tough month for me, with seeing standing heart rates back in the 130s occasionally (things had been in the low 100s for a couple months). 2014 rolled around and things seemed to turn the corner. Nothing really changed (still exercise biking 35 miles a week and doing some light leg weight lifting, still walking 120 minutes a day) in what I was doing. I'm not on any medications, just multivitamin, vitamin d, omega 3, and magnesium.

Walking heart rates seemed to be gradually improving again and I was feeling a little better. I even managed to stand in one place for 5 minutes as a test at one point (with an empty stomach) and my heart rate stayed in the 80s. That was some really encouraging improvement - something I hadn't been able to do for the past year.

Now the heart rates have continued to improve as January has worn on. When I first get up I'll generally see a jump to 100-112, but sometimes not even that high. I'm usually seeing walking heart rates in the 80s, and sometimes even the 70s. But I'm actually feeling much worse. I feel light headed and have a bit of a headache almost all of the time. I'm dizzy when walking again, something I haven't really been in many months. And yet I'm having the best heart rates I've had since I was hospital bed bound.

What's been scary (to me, maybe it's not really scary) is that the lower walking heart rates have been accompanied by bradycardia at rest. I'm now regularly seeing my sitting heart rate in the 50s, sometimes even the low 50s. This has been accompanied by a raise in blood pressure. I'm at 120-130/70 now. I used to be at more like 110/70 a couple months ago. The only thing that changed is I started eating dairy again (and quite a bit of it since it seems tolerable and has helped me put some weight on) with lactose pills since I'm lactose intolerant.

Could dairy really be raising my blood pressure so much in such a short period of time? I'll have to ask a doctor. In the meantime my head feels pretty bad, even sitting.

[andybonse]

I'm the same, I think it all boils down to change, it just varies over time I guess.

I dont think a bp that small of jump should be causing bradycardia. But heres my take on it.

The body may possibly have recovered some nerves so it works a bit better at vasoconstriction, so if there is vasoconstriction that still over compensates for what doesnt vasoconstrict, it would cause a reflex slower heart rate.

Your exactly the same as me mate, my HR other week was lower even standing and my head felt so weird and horrible i could not bare it.

The thing is, BP probably has no effect on the heart rate, since my bp can be 100/49 and be hr 50 and then 120/70 and be hr 50. Its so confusing!

The florinef, should cause a low HR to actually increase a bit, due to a Bainbridge reflex, which is what im hoping lol, I also think because of florinef, vessels can vasodilate more rather than an over compensation leading to better blood flow in the brain and more oxygen less symptoms.

Thats my theory anyways,

[Relax86]

I agree with andybonse....I think as the body is trying to 'right' itself there can be times of over-compensation during the healing phase. I experienced some days with low HR's in the 50's and was sort of puzzled. One forum poster had said they stopped looking at BP/HR numbers as our systems arent' functioning so the numbers don't represent our issue. Also, we can feel decent with numbers out of range and we can feel terrible with good numbers. So I took that advice (for the most part) and I don't use HR/BP data as a marker for successful recovery. I go by how I feel.

I had a little bit of a rough december and was worried due to a Disney trip planned for Jan 15-21st. I had some stress during the trip (bad contact fit, traveled with 8 family members, my husband hurt his back the week of the trip) and thought I was gonna flare while gone. I had about a half day of flaring. Had to push my husband in a wheelchair for 2 days which I thought I was totally doomed but came home feeling so incredible. Have had about a week of 'normal'. I share the story just as testament that this condition just makes no sense.

Dave - I'm not a dairy fan. But I think your change in symptoms could very well be a healing sign. In the 8-9 month mark after my worst flare I had terrible head pressure, silent migraines, which all seemed to dissipate with time and persistent exercise in my tolerable level. Good luck to your continued improvement. Recovery can happen!!! I'm probably consistently 85% better with occasional slides in either direction. From being bedridden to today - I'll take it. Hang in ~ Tracy

[gjensen]

Dave, good for you to be able to do what you are doing. That is a plus right there. I look forward to being able to do that much.

You know how I am with the head symptoms, all of the time. Just lifting my head is an issue. Is your head symptoms while sitting new?

Anyways. I was curious what your blood pressure was up right, and compared to what it was before. The same? 120-130/70 is still really good blood pressure. I would not sweat that one point.

It seams that you are trending better, but you are not feeling that way? It really does seam to be a shift or change, but the numbers say positive. Higher blood pressure that is still good with a lower heart rate tends to mean stronger and more efficient.

Since you have a good relationship with your doctor, I would say let him know about the changes. Just so he is on the same page.

I hope that this is a positive direction for you. You have a good common sense approach to this.

[davecom]

Thanks for the replies guys. All three of them are really helpful and encouraging. Thanks for taking the time to read and think about what's going on with me. I hope you guys are all right about this being a sign of recovery.

They say in a lot of conditions, things tend to seem worse before they get better. Maybe this is a bit of that stage. I hope that's what was going on with you too, Andy. I like your theory about some nerve recovery and overcompensation regarding constriction. That's the kind of optimistic idea that I was forming myself.

Relax, I'm glad you handled Disney okay. For me, recording and reading the numbers over the past year gives me some solace... something objective I can measure and see improvement in. I very rarely take my blood pressure unless I'm feeling poor, but I track the trends in the heart rate changes... it gives me hope as things very gradually improve over months.

gjensen, you got it exactly right - numbers that seem in a sense to be trending better, but head wise actually feeling much worse. My blood both now and before are usually 10-20 both systolic and diastolic higher upright than they are sitting. Definitely not orthostatic hypotension usually.

I'm seeing a doctor I haven't seen in many months next week who has some autonomic experience and my regular neurologist is not until March. I will probably make an appointment to see a cardiologist since I'm suddenly having all this bradycardia and feeling so unwell.

Incidentally I'm taking my first week off exercise since I started 8 months ago. I'm still walking 110-120 minutes/day, but I'm taking a week off the bike/weights to see if it helps.

[docradmd]

I'm in this boat too. The big change for me is also working out. I have also had more low dull headaches which may or may not intensify to full blown migraines. Still struggling with slow gut issues. I take multivitamin, vitamin c, b-12, b-1, Vit d, vit e. I also eat coconut oil more

[castronovo112587]

The bp doesn't seem out of the ordinary as the bp in a healthy person can fluctuate 15 points each way throughout the day and people with dysautonomia even more. On bad days my bp has gone from 140/96 to 90/56 in a matter of a few minutes just laying there. As far as the hr since your standing hr has gone lower it would make sense that your resting rate would lower as well. I was told by my cardiologist anything above 50 is normal and people who do daily cardio will often get lower resting hr over time. Ad far as the dizziness and feeling worse it could just be something triggering your dysautonomia symptoms like the cooler weather right now or something your not realizing I believe the dairy could be contributing to your headaches and dizziness as dairy can trigger headaches especially sinus ones. I have many times where my hr and bp are fine and still feel not good. I would just call your cardiologist if your concerned about the hr. Hope you get on the upswing soon

[Hope]

Dairy is one of my many triggers. I still sneak it in my diet, but I'm guaranteed symptoms from it. Like eggs or peanut butter will definitely lower my bp but I still gotta have them once in a while!