POTS AND SLEEP APNEA

[Anne 35]

I am a 35 year old female, who had an ablation on Atrial Flutter in the fall and was diagnosed with postural orthostatic tachycardia syndrome 3 months ago.  My cardiologist now says I am showing signs of failure to breath in my sleep(waking up to heart racing 125-140bpm per and headaches) He said the POTS would only cause my heart to rise while in an upright position, and that stopping breathing is the most likely cause. He said the same type of nerve that controls my blood pressure controls breathing and could be related.  He said this is very serious.  He ordered a sleep study immediately.  Family history-grandmother died suddenly at 49 in her sleep, family members remember she had symptoms simular to mine.  I like and respect my doctor, but I know he has not figured out everything that is wrong with me and I never get very much info from him, it is just his nature.

Question- 1)since POTS is an autonomic failure, then what does this second possible failure in my breathing indicate?

2)Is the cardiologist the person who should be treating me for an autonomic failure? If not then who?

3)What is the prognosis for someone with my history?

[Cleveland Clinic]

anne,

thanks for the post.

1)since POTS is an autonomic failure, then what does this second possible failure in my breathing indicate?

Disturbed autonomic function has been associated with sleep apnea.  The sleep apnea is part of the syndrome.

2)Is the cardiologist the person who should be treating me for an autonomic failure? If not then who?

People with autonomic failure, especially with refractory symptoms, often benefit from treatment at centers that specialize in treating patients with this syndrome.

3)What is the prognosis for someone with my history?

Difficult to say. If you do have sleep apnea, some people  benefit from treatment with positive pressure ventilation during sleep.

4) So what are the long term affects on my heart for it to race for hours at a time most days?

Excessive tachycardia can lead to subsequent cardiac problems including cardiomyopathy. I would want to know how often your heart is tachycardic.  Again, treatment at specialy centers may help better understand your whole syndrome.

5) Should I be taking a baby asprin to thin my blood?

Most likely not. Aspirin has nothing to do with the treatment of what you mentioned and would be more for prevention of vascular complications.  I would discuss with your doctor your risk. A woman your age generally wouldnt benefit from aspirin therapy unless there were other risk factors involved.

good luck

[Anne 35]

Sorry I forgot to ask this,(they say that is a symptom of POTS ha!ha!)

4) About half of my waking hours my heart rate runs between 120-140 beats per minute when I am sitting, standing, driving, doing the dishes.(My blood pressure machin also shows my heart rate)  I know that the POTS causes this, but what I do not know is how hard is this on my heart.  I am only 35 and this is a life long condiditon.  I am on midrone, but it does not alwasy work(especially during hormonal changes from menstation and ovulation)Seems like my heart would wear out earlier than most. So what are the long term affects on my heart for it to race for hours at a time most days?

5) Should I be taking a baby asprin to thin my blood?

[bama jane]

My doctor has been suggesting Flecanide for atrial arrhythmias  I have lately had in increaase in daily pac's to the 100+ range. I am presently on atenenol which has kept my pat to episodes of a few seconds or more but has done nothing for the constant pac's.  If anyone has a personal experience with this medication good or bad I would really appreciate knowing about it.  
Thank You

[Lexicon154]

Ask your doctor about Rythmol.  It's another anti-arrhythmic like Flecainide but may be safer.  I've been taking it for three years for suppression of PATs and SVT and it has worked very well for me.  I take 225mg twice a day, which is the lowest dose.  It now also comes in a sustained release form for those who take it three times a day.  Worth a try.

[Anne 35]

What is Flecanide? Does it lower your blood pressure?  POTS causes my blood pressure to run low, and wild drops in my blood pressure, and some times it crashes (recorded as low as 36/22) and I pass out.  My tachycardia is caused from the dropping of my bp (my heart tries to compensate the drop by speeding up, but in reality it makes it drop lower when it speeds up).  I cannot take anything that might lower my blood pressure further.

[Momto3]

I took flecainide for about 4 months for persistent pvcs. Although it helped to suppress the ectopics, I had difficulty with side effects.  I was taking a very low dose (they increase it as needed).  I took 50mg two times per day and had problems with weird dreams, trembling, digestive trouble.  Dr. said it was affecting my central nervous system.  Switched to rhythmol and side effects were not a problem.  My EP said she was trying flecainide first because I would only have to take it 2x/day and rhythmol would mean 3x/day, or every 8 hours. Hope whatever you and your doctor decide works well for you.

[bama jane]

Thanks guys for the information on rythmol and Flecanide.  Anne, Flecanide is an anti arrhythmic drug used in certain cases to control heart arrhytnmias.  As with all drugs there are side effects.  I am not sure about how it would react with blood pressure. For me persoanlly it would be last on my list that was why I was looking for people that had taken it and if it was helpful or not and how they responded to it. I have tried different drugs to control my arrhythmias with none of them being really successful at controlling the pac's.  Atenenol seems to control the racing but not the extra beats. I am having more than ever after being on it a couple of years they suddenly just increased a lot. Once again thanks for your responses.

[Dreamer Ho]

I take Flecanide for 2 years.  It really take effect to cover the heart arrhytnm successfully.  However, VT appears again after 2 years.  It is just my personal case and for your information.

[Dreamer Ho]

I take Flecanide twice a day these two year which can control heart arrhytnmias successfully.  However, VT appears again just now and I also seek for advice.  This is only my personal case for your reference.