Is it our heart/ virus???

[Sallysblooms]

This is an old thread I started a while back. Thankfully, I am doing great with the heart palps. etc that go along with POTS. I am now on supplements that have done a wonderful job.

 

[Tia]

There's DEFINITELY something wrong in the heart area, yes. I get really weird heartbeats now and then, and really often lately. We have death in the family to from heartfailiure.

 

[kat0465]

i agree, the heart is really affected, the older i get the worse mine is.
i had an echo done last wednesday, still waiting to hear what was found( probably not much) but it sure feels bad, and is really frightning.

 

[stp]

I've had CFS for a little over 3 years now. 34yr male. After about a year with it I had the sudden onset of an arrhythmia one evening which landed me in the ER for the night before it went back into normal sinus rhythm. I had been noticing my heart was fluttering and missing beats ever since the CFS symptoms started but this was definitely scary even though it was a non-life-threating type of arrhythmias. Tell me you wouldn't be scared when your heart starts going haywire and beating at 150 beats per minute in a wacky rhythm. After that I went to one of the better cardiologists in the area and had an echocardiogram. Everything looked great and he said I was fine, must have been a freak thing. Fast foward to June of this year. I had another arrhythmia happen and again they can't find any problems. I've now been given meds to take if it happens again but everything looks good they tell me. Well I still get the palpitations and flutters so I know everything isn't right. Before CFS I used to have a heart so strong that it felt like it was beating out of my chest. I was a cross country runner and in very good shape. Now, it doesn't beat nearly as strongly and I can barely feel it sometimes. I still try to run and exercise a bit but it's very frustrating since I get so tired while doing it. It has become unenjoyable. What's amazing to me is how so many of us have these similar sorts of symptoms and yet dr's still can't figure out what's wrong. Hopefully they get things figured out for us sooner or later because I want my life back.

 

[Resting]

I believe the heart is involved because the brain is involved!

I realize everyone has a different perspective on this but this is how my doctor has explained this to me. The autonomic nervous system is haywire with this illness. It controls your heart rate, blood pressure, circulation, breathing...anything that is automatic.

"What someone with autonomic dysregulation or (dysautonomia) feels on a daily basis is constantly changing and unpredictable. The most common symptoms of dysautonomia is a fast heart rate (not in proportion with the amount of exertion), shortness of breath, dizzy/lightheaded, weak, fatigued/exhausted and having difficulty concentrating or memory loss.

There are many other common symptoms that may be felt on a daily basis that include: orthostatic hypotension (blood pressure plummets upon standing), chest discomfort/pain, anxiety, feeling like going to pass out, actually passing out (syncope), and palpitations (irregular heartbeat).
Some people with dysautonomia have more gastrointestinal related symptoms than others. The common symptoms seen are nausea, vomiting, bloating, abdominal pain, diarrhea, and constipation. One of the other systems that can be affected includes the urinary system with varying bladder dysfunction. Dysautonomia often can also cause headaches/migraines, sleep disorders, hypoglycemia, and myofascial and neuropathic pain.

There are other highly life altering and bothersome side effects that include: heat/cold intolerance, excessive or loss of sweating, blurry vision, tremulousness, exercise intolerance, blood pooling, and noise/light sensitivity.

When feeling highly symptomatic during an episode of intense heart rate and/or blood pressure fluctuations, a person may have a variety of symptoms, including getting overheated and flush, dizzy/lightheaded, blurry vision, nauseous, about to pass out, they can't think straight, and shaky." [from:Health and Wellness, author: AJW]

Mood swings, including irritability are also a part of this. For a full list go to:

http://www.dinet.org/symptoms.htm

 

[anciendaze]

Just a point to consider, the autonomic nervous system is outside the brain. From some rather drastic medical treatments used in the past, we know you can cut the nerves connecting most parts to the brain (careful about the heart) and your internal organs will continue to digest food, secret hormones and eliminate waste. Some 90% of the receptors for neurotransmitters like serotonin are outside the brain. This has direct relevance to a ME/CFS patient's response to medications. We get all the side effects even if we get no benefit.

 

[Sallysblooms]

Resting,yes I have Dysautonomia(POTS) as you know. The symptoms are awful. I have had to be in bed most of the day. I am on the DINET forum. It is so odd how the autonomic system is so fragile in many of us. My CFS is better, but the POTS is the enemy now.

 

[Resting]

Just a point to consider, the autonomic nervous system is outside the brain. From some rather drastic medical treatments used in the past, we know you can cut the nerves connecting most parts to the brain (careful about the heart) and your internal organs will continue to digest food, secret hormones and eliminate waste. Some 90% of the receptors for neurotransmitters like serotonin are outside the brain. This has direct relevance to a ME/CFS patient's response to medications. We get all the side effects even if we get no benefit.

Yes, that was the wrong choice of word. I should have said nervous system rather than brain. Sorry, fog does that to a person! Yes the enteric system is involved with digestion and is a lesser known part of the autonomic system which adds to the intestinal issues and then there are the immune problems (food and chemical allergies etc). Given that about 70% of the immune system is in the gut, it is definitely a major contributor to this wretched illness.

 

[Cloud]

Obviously OI, POTS, and NMH are Neurological but manifest as cardiac. But, I've had all the true cardiac symptoms from arrhythmia's, shortness of breath with mild exertion, and even chest pain.....But still don't believe this to be Cardiac. I believe this because I've had mega cardiac testing that always shows normal. If the symptoms were truly cardiac...I would of been dead long ago. Just my personal view.

 

[Resting]

Obviously OI, POTS, and NMH are Neurological but manifest as cardiac. But, I've had all the true cardiac symptoms from arrhythmia's, shortness of breath with mild exertion, and even chest pain.....But still don't believe this to be Cardiac. I believe this because I've had mega cardiac testing that always shows normal. If the symptoms were truly cardiac...I would of been dead long ago. Just my personal view.

I agree with that Cloud. My doctor has dx dysautonomia which is handled by cardiovascular docs or neurologists and some knowledgeable GPs. The initiating trigger, in my case a virus, set off an autoimmune response attacking my brain (leaving lesions). It mostly attacked the brain stem which is where the autonomic system is located and the hypothalamus...the parts of the brain that are most indicated in this illness. My doctor further explained that the adrenals are controlled by this portion of the brain and so many things just domino from there. There is a genetic predisposition which is passed down through the mother. From the time I was a child I had Raynard's phenomenon (which is one form of dysautonomia). My mother's mother cannot sweat which is a malfunction of the autonomic system. The signs were there but who had any idea all of this could result. I am not saying that this is the case for everyone (everyone is different) but after many years I finally got an explanation for the heart problems as well as the rest and more importantly I am making gains since being treated by this doctor.

 

[Lucinda]

My acupuncturist has always said my main problem is my heart. This confused me for a long time as I had never heard people talking about ME effecting the heart before. However I do have a fast heart rate, get palpitations, get a lot of discomfort in my chest (not pain as such, just discomfort - hard to describe really), and I often get woken up by my heart pounding.

I had an echocardiogram, a chest x ray and a 24 hr ECG done to investigate these problems, but they all came out normal. Only abnormal thing was that I had a fast heart rate. My 24 ECG showed that my heart rate was above 100 bpm most of the time I was awake. It went all the way up to 146 bpm at one point. And it's not like I was doing anything. I was sitting/lying round the house.

Doctors offered me propanalol (beta blockers) to slow my heart down, as they said it could also be causing my breathing problems. However, I was reading Dr Myhill's stuff and she talks about the heart being a problem in ME patients, but that you should avoid taking beta blockers. So I didn't take them.

What are other people's views of taking beta blockers to calm down the heart?

 

[Cloud]

Propanolol has been reported by some to help not only the brittle Pulse and BP, but other ME/CFS symptoms as well. I'm not one of those people...it made me worse. But then I'm very intolerant of most medications. Good thing to get lots of feedback and more professional input since Beta Blockers are not candy.

Nice avi pic Lucinda....actually lots of nice ones on this page.

 

[Lucinda]

Thanks about the avi pic.

You say you reacted badly to beta blockers - may I ask how you felt on them? And did you return back to how you felt before you started taking them after you came off them? Or did the bad effects stay?

My doctor said to me to just give them a try and come off them if I felt worse. But I worry that if I do react badly, those bad effects could stay.

I forgot to mention, my doctor also said beta blockers could calm down my problems with being all 'wired' sometimes. However I'm really not convinced considering that she doesn't seem to 'get' my problems with being wired but tired.

 

[Cloud]

Thanks about the avi pic.

You say you reacted badly to beta blockers - may I ask how you felt on them? And did you return back to how you felt before you started taking them after you came off them? Or did the bad effects stay?

My doctor said to me to just give them a try and come off them if I felt worse. But I worry that if I do react badly, those bad effects could stay.

I forgot to mention, my doctor also said beta blockers could calm down my problems with being all 'wired' sometimes. However I'm really not convinced considering that she doesn't seem to 'get' my problems with being wired but tired.

It's been so long, and I only took it for a few days because it made me feel bad right away which is unusual for me. Even though I do have a pretty major med intolerance problem, at least I will usually feel better before worse, but not with this stuff. I know that the heart symptoms didn't worsen, just some of the other symtoms did....like the cognitive problems, maybe the OI some too. No, I came back to my baseline illness after stopping the Propanolol. It didn't cause a sustained worsening of symptoms.

I expect you will get lots of feedback on this because many of us have tried Beta Blockers. If it were me and I had a doctor telling me that it was safe to give it a try, and I had no contraindications, I would go for it since it is helpful for some some of us.

 

[Sing]

Not everyone with OI is of the POTS and fast heart rate variety; some like me have low blood pressure which drops dangerously low when standing still, but our heart rate doesn't race to that degree. My pulse will go from in the 60's where it usually is, up to the 90's. This is proportionally a big rise but not when measured against "normal". I too have most of the dysautonomic symptoms listed above, and am in my early 60's. I know my heart is under pressure, just as my whole system is, when I try to/have to walk or stand and my bp is really down there. I struggle a lot until I can rest. But I feel I have to do more than my body wants to as it is just me taking care of things.

I think that if I/you didn't have a cardiac problem to begin with, given the lack of coordination going on, we eventually would have, due to cardiac strain of one kind or another. I appreciate the reminders here about rest, pacing and maybe going to a cardiologist at some point too--

 

[Marg]

Yes, I totally agree. I think that racing heart is EBV and or HHV6 coming out for a party. It has happened to me that way both times. I did not know what it was the first time but I do now. I had all the tests the first time and came out fine. I even got through a graded stress test they kept telling me how great I was doing. I should have I had been knocking off 3-5 miles 5 times a week before I started the panic attacks and heart racing, especially upon awaking. I remember sitting up in bed to breathe better and I could feel my heart beating on the head board of the bed. Now, that was scary. I think I had OI then and no one got it.

I had to go away for a while after the stress test and then a test to see how the thallium was going around my heart they had injected me during the stress test. Well, I had a huge panic attack while we were killing time to go back and the flu feeling was awful, I don't know how I stayed under that machine, I was in such a a state. The results were...nothing mechanically wrong with my heart...nothing wrong with echo either.

I remember this too that in congestive heart failure the fatigue is right away not the next day, seems like I read that.

.

 

[Lucinda]

What is EBV and HHV6?

 

[wciarci]

Hi all, quick reply

Dr. Stephen Sinatra of Manchester Ct, uses supplements with his heart patients. He feels mitral Valve prolapse is due to a magnesium deficiency and he treats his heart failure patients with CoQ10. He also believes strongly in D-ribose and acety L carnitine. Please note that many cholesterol lowering drugs prevent CoQ10 from being absorbed so take the supplement many hours after the Statin. He recommends high dosages. In Europe (Italy I think), the first med used for congestive heart failure is CoQ10.

Hope this helps.

Wendy

 

[Cloud]

What is EBV and HHV6?

EBV....Epstein Barr Virus

HHV6....HumanHerpes Virus 6