I just wrote a reply to each of you and it didn't save, and I should have written it in another program first, then copied and pasted it here, but I didn't, so I'll try to rewrite everything later when I have the strength. Thanks for all of you sharing your experience and info!
Well, hind sight is 20/20, or so they say! Hope you feel up to writing it all down again soon, so we all can see what you want to say.
I hadn't heard of Nitro in regards to Lupus. How is it working for you?
Sheila W. said:
Yes Irenelee, I do have nitro for pain as well.
It's a vasodilator. For someone not getting enough oxygen to the heart, which causes angina (and is very painful), it is taken prior to an activity that would cause an attack. I'm guessing she means she has it for angina.
RJQ said:
I hadn't heard of Nitro in regards to Lupus. How is it working for you?
Sheila W. said:Yes Irenelee, I do have nitro for pain as well.
A friend of mine had the exact same thing and it turned out it was a disautonomic disease called Potts.
I would definitely see a specialist to at least double check. Good luck!!
POTS. It stands for Postural Orthostatic Tachycardia Syndrome. When you stand up, your BP drops. It can happen anywhere from immediately to 12 minutes later. The heartrate goes up while the BP drops.
Queenie said:
A friend of mine had the exact same thing and it turned out it was a disautonomic disease called Potts.
I would definitely see a specialist to at least double check. Good luck!!
Hello Sheila,
I hope your keeping ok my friend and when you can an update of how you've been feeling would be nice to know.
Thinking of you dearly Hugs Terri xxx
(Shoot, 5 edits and I give up. The font size and the spacing are all messed up.)
Thank you all for your input and info and your caring hearts!!!
Irenelee, yes I use nitro for heart pain too. Glad there is such a thing!
Marissa, do you think your Dr. is right? Do you feel anxious as often as your heart rate speeds up? I am completely calm when my heart speeds up, and my heart rate stays high all the time except when I lay down flat. Even sitting up raises it again. If your Dr. got your diagnosis right, I’m happy for you. Yes, I think mine is related to a lupus flare that is affecting my heart, but I don’t get anxious about flare ups much anymore. I got upset at first about his heart thing because the Dr. kept telling me how dangerous it is, but I don’t even have the strength to be anxious anymore. I just go along with whatever comes and try to do my best each day despite my limitations. Sorry you lso have hypertension like Terri (Tez). I am glad I don’t have that problem.
Kim, your story sounds a lot like mine. My legs now give out on me and I was blacking out all day today. My oxygen goes really low. I think Atenolol is similar to my propranolol, and like you, it slowed down the fast hear rate in a very short time. My problem is that I can only take it on days when I plan to do a lot of physical work or walking, or if I’m going out of the house, because it is really dangerous for heart failure. So he did confirm that I had heart failure but said that tachycardia is not a symptom of heart failure. So I chalk it up to lupus. I’m glad you’re feeling better now. It does feel like I‘m dying sometimes and the Dr. said it’s very possible, because at very high pulse rates, your heart just flutters, it’s not strong enough to pump blood through your heart and body. My heart has stopped a number of times, but a few times it was in the E.R. so medical staff were there to help, and other times, I guess God restarted it. I’m still here for some purpose.
Terri (“Tez” for those who don’t know it’s her first name)
Yes, I’m sure that’s the problem. Lupus attacking my heart. Yes, I meant heart failure when I made a typo and typed “hearty” failure. I can’t take the beta blocker daily because it makes my unique kind of heart failure worse. It’s called ischemic heart damage. There are also 3 kinds of tachycardia. Atrial or Supraventricular tachycardia (SVT), paroxysmal atrial tachycardia (PAT) or paroxysmal supraventricular tachycardia (PSVT). My Dr. didn’t even know there are 3 kinds so he didn’t tell me which I have, but the one you told me about in your first 2 links in an earlier comment, sounds like mine. I think that was atrial. Thanks for all the links.
Celeste, I did read that ablation of the nerve that creates the fast heart rhythm was an option. Sad to know you had it and it didn’t completely clear up the problem. In Canada, especially in smaller cities, the care is dangerously negligent. It’s a 6 month ordeal every time you want to see a specialist. Next biggest city to me is 4 hours away and I can’t get myself there and I don’t know anyone locally who would help me get there. After the horrendously abusive care I received last week, I am sure I will be dealing only with naturopaths from now on. My GP/family Dr. is good enough to give me the insulin and other natural meds that happen to be controlled by doctors instead of naturopaths, so I need her for those, but I react so badly to prescriptions that I do better with the natural alternatives of each thing I was prescribed.
Karen that’s really interesting that low hormones can cause this! I went through surgical menopause at age 21. and it’s interesting to learn another cause for tachycardia. I will definitely look more into DHEA!
Tala I have had calcium, potassium, electrolytes and thyroid checked. I am hypothyroid. I suspected POTS but the Dr. said my blood pressure would have to fall if that was the diagnosis. Glad the beta blockers also help you. I have enlarged ventricle and enlarged heart, so I know what you’re going through. Just surprising to go through it so young, right? I’m just so puzzling because my blood pressure is not too high or too low. I have an echocardiogram scheduled, but my last appt was so abusive, that I’m sure the results will be put into my file never to be seen again. because I won’t go back to him, and my family doc said she doesn’t know how to read ultrasounds. So I’m thinking of cancelling that test. This Dr. has already caused irreversible damage by making me wait 4 months for tests that would have been done in 1 day in the USA. I don’t think we even get what we pay for, which is almost nothing. He kept telling me how dangerous my unique issue is, and that the longer I go without treatment for it, the more scarred and damaged it would get, until a remedy would not be available, then he makes me struggle for 4 months. A month ago he gave me the prescription for the beta blocker, but said he wanted to put me on the 24 hour pull, rather than the 4 hour pill I had years ago. I had a bad reaction, called his office to ask him to please call in the 4 hour pill, and he said no. He made me go for a month suffering and postponing my Mom’s surgeries until I could get the meds, and having to hire a lady to help us get groceries or get to the Dr. and cabs to get to hospital and doctors when that lady couldn’t come. Then I got to the appt last week and thought maybe the receptionist didn’t tell him about the drug reaction. She did, and he just chose to make me suffer and get more damage for a month!
So where I am now is dead ends and physician-caused irreparable damage and changed lifestyle, and pure frustration until I can find a smart naturopath. Two specialists now have been told the gov’t won’t pay for expensive heart treatments for a non-productive member of society (someone on disability). I think this is the universe or God leading me to the right treatment FOR ME, because probably any other prescriptions they would give me (because that’s all they do) I might react to, like all my other prescriptions.
RJQ I’m glad yours just lasts for a couple of minutes. Nitro is for heart pain, no matter what the cause is. Tala explained it better. It opens up dilated veins or arteries and often relaxes some muscles in the chest.
Awesomed Am glad the beta blocker helps you. Seems to be the same medicine in this case for everyone.
Queenie thanks for the suggestion. Been tested for POTS, (postural Orthostatic Tachycardia Syndrome) but my blood pressure doesn’t go really low, so I don’t have it.
Thank you all for your help and feedback. You definitely helped me.
Hello Sheila,
Lovely to hear off you and how you've typed such a long message "God knows mate" it's a shame you lost the other's :)
I'm sorry to hear the Beta blockers affect your heart on a daily basis but like you say it's according to your heart condition and it just goes to show with you mentioning 3 and your welcome regarding the links as they described the conditions well when i was reading them.
You life is dangerous on a daily basis the same as myself but in a different manner, i drop into coma's quick and my heart stops with my epilepsy but i think that's due to the over active heart beat which i was diagnosed with in my early 20's which i mentioned.
There's so many aspects with Lupus, it's like we're ticking bomb shells.
Enjoy your weekend best you can & all my love Terri :) xxx
Very scary Terri, that you drop into a coma so quickly and deal with seizures. It makes us appreciate every joyous moment that we can, right?
Hang in there!
Sheila
I don't bother about it now because if i die i die because i'm out of it Sheila anyway and i won't have a clue, that's how it's made me with life and you can die quicker with seizures than you can diabetes...i'd never wish epilepsy on my worst enemy
Well it's taught me to appreciate what i have around me and also yourself and other friends on the net :)
Sheila W. said:
Very scary Terri, that you drop into a coma so quickly and deal with seizures. It makes us appreciate every joyous moment that we can, right?
Hang in there!
Sheila
I am currently on Digoxin--for tach...My cardiologist has mentioned several times that his "money is on the Rheumatologist". Since then I have read that immunological diseases can at times provoke it, and even be fatal if not treated.
Get a Cardiologist. I did.
Thanks Latina,
I did get a cardiologist. Thanks for the info that immunological diseases sometimes cause this.
Hello Sheila,
How you feeling my friend and answer in your own time :)
I feel everything thanks Terri. lol. Thanks for caring and checking up on me. I have a back injury and have tried for 3 weeks to get to a chiropractor but I just can't sit in the car, so I'm calling around to see if one will come to the house. Lupus has settled in my spine and caused all sorts of systemic problems. One good thing is that it keeps me down so my heart doesn't act up as much.
The glass is almost full, never half empty. I always try to concentrate on the things I can do instead of the things I can no longer do. It helps me a lot to move forward. I also helps me smile.
Wow Sheila,I wasn’t aware your medical care in Canada was so awful,"I live in Oregon and I always heard your health care was superior compared to ours,"I’m miss informed,I’m sorry you have so much trouble with good doctors…I have some good drs and insurance but I pay a lot of out of pocket,I won’t complain anymore after hearing about your health care…“I pray things get better for you”…I hope you are doing better…celeste
Hi Sheila,
I have the same problem with tachycardia. I was put on BP meds to lower my heart rate because my pulse was constantly at 160 or above. I've been experiencing heart issues like that since puberty (13 years ago!). I finally got my butt into a cardiologist and she said I had MVP (Mitral Valve Prolapse) after not knowing the cause of the rapid heart rate for years. She thinks it's completely unrelated to the Lupus, just something my body does. I wish you lots of luck! I know how irritating tachycardia can be!