Constant Fast Heart Rate, Not Just Standing Anymore, Does Anyone Know What This Could Be?

[jrlehnardt]

I have eds and pots. I do not know what type as my husband is in the army, and the medical center and my doctors say they can't do genetic or research testing. I do not know if i have pots because of my eds or it is just a coincidence. My pots came on after I had a hysterectomy after my last pregnancy 5 years ago. After the delivery my heart rate was fine for 6 weeks, then I had to have a hysterectomy due to uterine prolapse, and from that point on I had a fast heart rate upon standing. I have had the typical eds and pots symptoms. But starting a year or so ago my heart rate won't go back down to a normal rate when sitting or laying. My heart rate is 100+ while I am sleeping and is typically 120-150s sitting and will be 140-200+ upon standing. I have had headaches for years as well. I have always been cold in my hands, feet, nose, bottom. And I never really sweated. Well starting about a year ago when my heart rate would be high while sleeping I started sweating and in the last few, months it has gotten really bad. I have hot flashes, excessive sweating only upper body, my hands and feet still stay cold. Well I started have chest pains more often, and nothing seems to help or make it worse, it just happens. Well in the last month my blood pressure is now high consistently. I am skinny and don't have any other health problems. I don't drink alcohol or caffeine and I do not smoke. I know standing norepinephrine levels can be high with pots, but my sitting norepinephrine levels are high, normal is 100-700, mine was 1107. The family doctor is thinking a pheochromocytoma, but I have had a CT of my adrenal hands came back clear, I have had an mibg scan, came back clear as well. My endocrinologist, sayds I have all the symptoms of an extra adrenal pheochromocytoma, but doesn't think I have it as it is rare. He is doing new blood work to seei and possibly 24 hr urine to check my norepinephrine levels again. If it isn't a pheo, my doctors have no idea what it is. I am not taking meds, as i had to stop for my mibg scan. I know with a pheo people typically have "episodes" where their heart races, sweats, headache and that is when the norepinephrine is being released excessively. My situation is that my heart is always racing. Yes i do have episodes where it is worse, but i never have a normal heart rate anymore. My question is has anyone had this or knows what it might be?

[lissy]

I'm unsure of the specific condition but my fathers heart always races and he was on Atenolol and it stopped the tachy and he was no longer fatigue.

Hope you find answers soon.

[lieze]

Bless your heart that has to be exhausting to never get a break from the high heart rates.

Have you tried a benzo like Xanax?

An older lady told me that if you can't take heart meds Xanax is pretty effective in slowing down the heart.

I do hope you find some answers.

[MomtoGiuliana]

I'm sorry you are having such a hard time with severe tachycardia.

I know when my POTS symptoms were severe my heartrate was nearly always 90 bpm+. Even lying down. Standing it would go to 160+. So I think POTS can cause a generally elevated hr. not just high on standing, if it is severe. Does it help your high heart rate to increase fluids?

I hope you find some answers and relief too. Fortunately there are quite a few different meds you and your doctor can try for relief for POTS symptoms.

[jrlehnardt]

My cardiologist that doesn't care to know anything about pots, put me on metropolol. I ended up in the hospital because it dropped my blood pressure too much ( this was about 3 months ago when my BP was low not high). It really only dropped my heart rate maybe by 10. So not much of a break.

I have never tried a benzo. If my doctors don't have any answers I will bring it up to them.

Fluids doesn't help unless it is IV saline solution. I drink about 80 ounces of propel a day because it does help with other symptoms, like not as much muscle pain and headaches. There was one time the doctors put me on cymbalta to see if it would help with my pain, headaches. It made me so nauseous I could not eat or drink, so on the fourth day I ended up in the er. Of course I was dehydrated, and my laying down heart rate was 184, which I expected it would be bad since I was dehydrated. After they gave me the 3 rd liter of saline IV fluid my standing heart rate went down to 92. I felt amazing for 2 days. I tried to keep my heart rate low by drinking tons of fluid but it doesn't work. So i am sure it has to do with blood volume. But of course I am limited on what tests Drs can do here. If i could have IV fluid daily, I would feel amazing probably. My family Dr did put me on florinef which helped with lightheadedness, but it doesn't do anything with heart rate for me. But my hands and feet are extremely cold and weird feeling on it, to the point that I have to put my hands and feet in hot water just to get relief. I also have a weird "airy, cold" feeling in my ears while on florinef. So I stopped it.

I was just hoping that it is something else besides some rare tumor on top of eds and pots.

[cgnursegirl]

If I am that tachycardic, I will take an extra dose of beta-blocker or some Klonopin. and drink extra fluids. If that doesn't work, then it might be time to go to the ER or urgent care and get an IV. My cardiologists have thrown around the idea of a sinus node ablation or a pacemaker to lower my HR, they seem to want to keep it as a last resort option, but I might eventually have it done. I am sorry you are feeling so crappy. In my experience, if you go to the ER and tell them you have "orthostatic hypotension" they will generally understand your basic problem and give you IV fluids. Also having a note from your cardiologist for the ER doctors, to help explain your condition and what treatment is needed can be helpful. Good luck.

[jrlehnardt]

Ya, I think I need to stop being so stubborn and go to the er when my body really needs it. I just stay at home and deal with and will be in bed for days while my husband carries me to the bathroom when i have to go, or I crawl there. Sometimes when I am that bad I wish I had a catheter in so i wouldn't have to get up to go to the bathroom.

My problem, is that for the last year I am always like this. I may have a good day out of a few weeks, but pretty much it is constantly that fast. The beta blocker didn't work for me and i drink 3 litres of propel daily. I think I will try the salt tabs and see if my stomach can handle it. My stomach doesn't really handle too much unfortunately.

[jackiemxoxo]

I do not have an answer for you but I empathize with what you are going through. Tachycardia is my worst symptom as well and it makes everything more difficult. When I first got sick a year and a half ago my symptoms and heart rate numbers were similar to yours. Nothing I did helped and I was in the hospital for 2 weeks because of it. I got tested for pheo too amongst other things. all negative. Make sure you have a good doctor who will test you for everything because you never know what could be the underlying cause. I think with pots too weird things set off heart rate like an allergy, sickness, not enough sleep.. anything and everything. It took about 4 months before my heart rate slowed down some. Now I am at 80 lying down and 120+ standing. My neuro-endocrinologist just said I have an overactivity of the sympathetic nervous system. I hope you find some answers.