Remission....

[firewatcher]

The last several weeks I have had some really strange symptoms, for me: upright bradycardia, chest pain and seated/standing grey-outs. I am usually tachy when upright and only have chest pains and grey-outs on sudden/prolonged standing. I've been wracking my brains and my GP's brains about what could be going on and his guess is as good as mine. Then I had a thought! This should happen if a "normal" person were to take a beta blocker, my GP even had me cut my normal dose in half to see if it helps. Well, today I was mildly tachy this morning and immediately on standing, but for the rest of the day, I had "normal" heart rates!

I am still tired. I still have "the headache." But I have been more exercise tolerant the last two sessions and far less sore.

For those of you who experience remissions, how much do your symptoms recede? Do you still have the same symptoms but not as severe? Are you still orthostatic?

Could this be a remission, or am I just overly hopeful?

[Guest tearose]

Goodness, yes a remission means I still have all the symptoms, I am just managing better. I have to work to maintain remission!

A relapse means I am very homebound, probably not driving or going out because of the symptoms.

It is a very frustrating disorder because we may be in remission and go out to a dance and the next day be very symptomatic and all flared up for the next few days. Or we catch or are fighting a cold or we go through extreme temperature changes...

I don't do meds so I don't know how these are managed. I do know that without compression my heart rate is 10-25 beats higher.

[MomtoGiuliana]

Remission for me means mild symptoms. At my best (since 2002 when I intitally had exteme (florid?) POTS) I still have orthostatic issues, but they are mild and barely noticeable. I can do mildly strenuous activity and basically lead a normal life. However, I always have to be mindful of triggers I can control such as getting enough sleep and staying hydrated.

I would guess that taking a beta blocker for me, during remission, would likely cause the symptoms you are describing.

[firewatcher]

so suddenly bradycardic, wouldn't be a positive?

[MomtoGiuliana]

I have had short episodes of upright bradycardia in recent years. Very transient. Not on bb when these have occured, usually. My EP told me this symptom can develop in POTS patients. He was unconcerned.

[lieze]

How low is your heart rate?

I've seen mine get down in the 60's and I start to get nervous.

After having it beat as fast as we're used to it just feels weird.

I'm wondering if it could be from the beta blocker too.

I think that over time it can lower your pulse.

I'm not on any meds and it's just weird to see how our bp and pulse can fluctuate so much.

Lately when I get what feels like an episode my bp goes up and heart rate stays in the 80's.

This seems opposite of a normal POTS reaction.

I don't know if I'm having anxiety? I think I might be.

It's so hard to sort it all out.

[the4richards]

Firewatcher,

I have been experiencing similar symptoms lately. I am on a beta blocker. I had to cut it in half because it suddenly started working "too well". On the half dose I have periods of standing pulse of 65 that I translate to be about 85-95 without bb...which I would term normal heart rate. Prior, without meds my standing heart rate was 120-150ish, with meds never under 85.

I am really tempted to just go off the bb, but I feel really good and I'm too chicken.

I still get dizzy if I'm standing still for too long although during the periods of "normal pulse" I do experience a much better standing BP.

Keep the Faith!

[lieze]

If your vagus nerve was stimulated wouldn't it slow down your heart rate?

I think that is the normal reaction.

[the4richards]

Firewatcher,

I have been experiencing similar symptoms lately. I am on a beta blocker. I had to cut it in half because it suddenly started working "too well". On the half dose I have periods of standing pulse of 65 that I translate to be about 85-95 without bb...which I would term normal heart rate. Prior, without meds my standing heart rate was 120-150ish, with meds never under 85.

I am really tempted to just go off the bb, but I feel really good and I'm too chicken.

I still get dizzy if I'm standing still for too long although during the periods of "normal pulse" I do experience a much better standing BP.

Keep the Faith!

[firewatcher]

my HR has been 42-55bpm sitting and standing still. It isn't all the time, but frequent and more so after meals.

[lieze]

That is too low.

I think you do need to come off the beta blocker- maybe it is having that effect.

(Just my opinion)

My pulse is pretty much normal at this point.

I just get weak out of the blue and feel like I'll collapse.

So it's more of an activity intolerance at this point and I never know when I'm going to reach my limit so that is the frustrating part for me.

Also my anxiety is just off the hook and I can't discern between anxiety and my body crashing.

I need an interpreter because all my guages feel broken.

[lissy]

Hello,

When I had my remission if that is what its called I still had tachycardia the dizziness was more tolerable and I had less triggers. It came on one day I felt pretty much normal I had to checked my heart rate I couldn't believe how good I was feeling, it was still 120 and I just noticed not much was affecting me it lasted 2 months except during the (cycle time).Then it came right back on just like it went off going on a week 1/2 of pure misery. I hope it doesn't take another 2 years to have another remission but it really made me hopeful for the future.

Lissy

[Brye]

I've had those thoughts recently too about perhaps not needing as much of the Beta blocker. My HR"s have been dropping down in the low 40's as well lately. In the past when I've tried to cut back on my atenolol though my tremors became quite a bit worse. It's so hard to know when to adjust meds because it's so much trial and error and I hate the error part. Keep us posted on what you figure out!!

Brye

[ramakentesh]

Ive experience two remissions since ive had POTS - one that lasted four months of low symptoms and another for 3 years where for three months or so I was almost symptom free. The onset of my remissions was always subtle and gradual to the point where one day Id suddenly get the realisation that I was doing stuff and not thinking about feeling unwell because I had not for a while.

Never sudden.

However, my doctor said he had one spontaneous remission - a patient that woke up one day without pOTS. Out of the blue!

[scarfgirl]

I go through what I call remissions, but what remission for me means is when all the other weird crap (painful bloating, coathanger pain, vomiting, brain fog) takes a holiday. I'm still tachycardic without meds, but the tachycardia just doesn't seem to effect my quality of life as much some times.

[scarfgirl]

Here's hoping your remission keeps going.....hopefully forever!

[firewatcher]

Well, today is day two with 1/2 my BB: not very pretty. My general HR was higher and I am very shaky. I had a few brady episodes, but they ended quickly. The only thing that I can figure that I have done differently is stopping my allergy shots. Its been about six weeks of daily beta blockers with no weekly break for shots. Hmmm.

[jolineshope]

I had a two year remission, that was bliss for me. In the beginning of the two year remission I would still have symptoms but they were more tolerable so I would slowly push my activity level each week. Then before I knew it I was living my life "normally" with really no symptoms except every so often when I would not do my daily rehab exercises or if I stayed in bed for half the day for whatever reason. by the second year of the remission I was walking on my treadmil everyday and doing yoga and Tai Bo and really just enjoying life with no symptoms.

For whatever reason last month i started having symptoms again and like an over confident idiot I just brushed it off and carried on. Well as the weeks have gone on the symptoms have increased and my activity level has fallen off with the increase in symptoms. finally by this week I got hit hard, still not sure why but I am now back to my wheelchair and being mostly bedridden. I have gone back to my EP cardio and for the past two weeks we have been trying to get me adjusted on meds again but it has been to no avail, so I am headed back to Vandy and I am starting back into cariac rehab. I am not reaching a point of panic yet because I got better once and I know this is not forever, I will get better again I just need to find what it is going to take to get there again. Obviously, you can get better and even reach a point of being symptom free, but I have now learned that you still have to be aware that you can go right back, so you need to pay attention to what your body is saying to you at all times. For those of you that are still trying to reach a point of remission or for those of you who have reached it and then gone back to being sick again just remember that it does get better , you just have to find the therapy's that work for you and remember this is just one moment in your life and you will get passed it. always have hope and always keep trying everything and anything, you will get there, just don't panic because that plays into this illness and it can make you worse. good luck to all of you.

Jolie

[Guest tearose]

firewatcher,

Could you be having a paradox-type withdrawal reaction? I want to suggest that what ever your Beta blocker was blocking now has to learn to "learn" how to gear up again. The "beta" has to get fired up again....just my sense of it...

Hang in there and I'm not sure about effect of the allergy shots since it was 6 weeks ago. If it had been sooner it would have been more likely but only YOU know your body. Try to listen to it.

tearose

[lieze]

Thanks for sharing your story Jolie-you're giving me hope.

[Guest tearose]

Please avoid the potshole Jolie!

Keep taking good care of yourself and focus on this moment. You are here and reading and sharing with us and for this we are glad and you are keeping connected.

Don't be hard on yourself about "overdoing" we are always hopeful and try to think we are "all better" and we push the limits. It is normal to keep reaching higher.

Wishing you strength,

tearose

[futurehope]

Firewatcher,

So, you used to take weekly breaks from your BB? But then you stopped getting allergy shots, so there was no need for breaks? IOW, you have now been taking the BB continuously, with no break? Just trying to understand.

If I'm understanding you correctly, you are now taking bb's continuously and this is not what you used to do?

[firewatcher]

Before, I had to stop the BB for one day a week in order to take my allergy shots. A BB would make an anaphylactic reaction harder to treat and I was having bad reactions to my shots. So bad, that we finally stopped them altogether six weeks ago.

This is the first time that I have been taking my BB daily, every day, ever.

My dad (Doctor of Pharmacy) and I think that this is what is going on:

Because I have reduced kidney function, the Propranolol is not being cleared effectively from my system, and is more potent than it would be in a "normal" system (according to Drugs.com and the FDA.)

Sooo, one of the responses to initial, continued use of propranolol is actually an increase in blood pressure and bradycardia...which is exactly what I've experienced so far. So I intend to test this hypothesis by coming off the BB entirely tomorrow and then go back on for six days and return to my six on, one off dosing. If my bradycardic episodes subside and my BP returns to "normal," that was probably it. I still will get the endocrine blood-work done to rule out thyroid or electrolyte issues and keep my appointment with yet another cardiologist.

It is the only thing that makes sense in symptoms and timing. I've never been bradycardic when awake, always tachy.

[ramakentesh]

but I have now learned that you still have to be aware that you can go right back, so you need to pay attention to what your body is saying to you at all times.

So TRUE!!!!

Both my remissions I felt so well that for years i was walking around like I was invincable. You tend to lose respect for what your body can throw at you and when it hits again you always remember that its ten times worse than you remember it!!

Remissions can definately happen - ive had two where you would never have realised I had POTS, running everyday, swimming, snorkelling, spear fishing, playing in a band, standing for rehersals for 8 hours! But nowdays I get dizzy in a seat after an hour.

[TXPOTS]

I began having debilitating symptoms starting May 2008, but I plugged along until collapsing October 2008. I was admitted to the hospital where I was given copious IV fluids. I went into a remission after my hospital visit with only mild symptoms until March 2009 when symptoms returned after a day in the heat and a stressful event. I still did not know that I had POTS. I was very ill until the middle on June 2009 when I literally woke up one morning feeling wonderful and almost euphoric. This lasted for 2 weeks and then my symptoms came back with a vengeance, and I have been battling POTS since. I was not diagnosed until December 2009. This is a very bizarre illness, and I've had 2 remissions of sorts over the past 2 years: one gradual and mild and one sudden and complete, but very brief.