shortness of breath and lightheadedness when talking!

hmnr asg

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hi there,
I am currently going through the worst crash of my CFS. The crash began two months ago after a period of exertion.
Some of the symptoms that were new in this crash (aside from the classic fatigue etc) were palpitation and a feeling of fluttering in my heart and this feeling of light-headedness and dizziness and shortness of breath especially when talking!
It's not as bad when i walk or I'm resting, but talking just kills me! I have to stop all phone conversations after about a minute and even then the feeling of gasping for air and dizziness doesn't go away until i go to bed and wake up the next day!

Any ideas? Could this be heart failure?

Thank you !

H
 

ryan31337

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It would be sensible to see a cardiologist and given the context I would recommend specifically seeking out one that understands POTS and other autonomic problems, not all do.

There are many possible causes and you would only be guessing until some proper cardio-respiratory testing is performed, but I would have a high suspicion of POTS.

In the meantime I would pay attention to your breathing, many many POTS patients develop dysfunctional breathing, not psychological but a physiological response to being upright. If you do have POTS it is likely you are breathing too deeply and/or too often, and talking a lot might be aggravating this further. If you have an exacerbation of this breathlessness and other symptoms when standing still this would be a strong indication.

Ryan
 

percyval577

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i am familar with your symptons as they popped/pop up sometimes. During my youth I always had heartstiches. Now I have had during two springs high blood pressure and a strange heartbeat. I have been to the cardiologist of course. But as it doesn´t last all too long I even would refuse to take any medical (which I was not suggested to anyway).

What i figured out only recently and what might help to some little extend (even if one might laugh at it) are the following movements leading to a calm down to some (littel) extend:
1. Making movenents anticlockwise. For example I move both arms parallel (or not parallel) in front of me, or the legs when I am sitting, even the eyes (sometimes with other movements describing a union jack). There are a lot of variations. Or I turn myself anticlockwise one time.
2. Making movements foreward round, for example doing "bycycling" with the arms.
3. Ones before I got such bad ill I had after antibiotics (doxycycline) irritations including halfsided facial paresis and very uncomfortable shortness of breath. the latter one was helped a bit by swimming which I - only - now could rediscover:

Because it should be a prerequisite at least to 3. I need to say that I am long-term improving, very slowly in respect of uncomfortable pain and a basic exhaustion-feeling by restricting manganese (avoiding high manganese food), there was an immediate improvement of sleep. (Additionally i now discovered a good effect when eating fat and sugar only one time a day, but fat not to less as it is very important I think. Need to look at it further). Sugar is a bad influence on my heartbeat.
 
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RebeccaRe

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Some of the symptoms that were new in this crash (aside from the classic fatigue etc) were palpitation and a feeling of fluttering in my heart and this feeling of light-headedness and dizziness and shortness of breath especially when talking!
Any ideas? Could this be heart failure?
When I was at my worst I would often run out of breath when talking. I wouldn't get light-headed or dizzy, but I'd be in the middle of a sentence and have to stop and catch my breath. Like you, I thought it could be heart failure. But as I slowly came out of that crash, those breathless symptoms got better along with all of the other symptoms. So no permanent damage. But if you're worried, it's worth being seen by your doctor (if you can manage to crawl over to your doctor's office) to rule out any heart issues.
 

crypt0cu1t

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hi there,
I am currently going through the worst crash of my CFS. The crash began two months ago after a period of exertion.
Some of the symptoms that were new in this crash (aside from the classic fatigue etc) were palpitation and a feeling of fluttering in my heart and this feeling of light-headedness and dizziness and shortness of breath especially when talking!
It's not as bad when i walk or I'm resting, but talking just kills me! I have to stop all phone conversations after about a minute and even then the feeling of gasping for air and dizziness doesn't go away until i go to bed and wake up the next day!

Any ideas? Could this be heart failure?

Thank you !

H
I second @Learner1 Definitely look into autoantibodies.
 

Learner1

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It would be sensible to see a cardiologist and given the context I would recommend specifically seeking out one that understands POTS and other autonomic problems, not all do.

There are many possible causes and you would only be guessing until some proper cardio-respiratory testing is performed, but I would have a high suspicion of POTS.
I see a dysautonomia specialist, a neurologist, as POTS is a problem with the nervous system. These are tests he ran:

https://www.neuroassociates.us/autonomic-test-referrals.html

POTS can be autoimmune. The Cell Trend tests on the attached test for some of the antibodies that can cause POTS.

However, with the symptoms you're describing, it might be wise to look into some of the other antibody tests on that list. Other patients on this site have had a wide variety of these antibodies.
 

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ryan31337

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Hi @Learner1,

I would suggest that if someone cannot see an autonomic specialist, they may have a better chance of POTS-awareness by seeing a 'regular' Cardiologist rather than a 'regular' Neurologist. Partly because of the nature of symptoms, but also because it is the Cardiovascular societies that have come forward and proposed the guidelines. But of course the aim should always be to see an autonomic specialist in a Neurocardiology department like we have done.

The evidence for autoimmune causation of POTS offered by the Cell Trend tests is not nearly robust enough yet to lead to specific treatment, outside of a small group of 'enthusiastic' clinicians. So for practical reasons I would not advise shelling out for those tests until there is good replication & acceptance, unless you have the support of said clinicians.

I think perhaps a better approach to be taken seriously would be to explore the possibility of Small Fibre Neuropathy involvement and general markers for autoimmunity, as per Dr Oaklander's 'apparent autoimmune' POTS hypothesis. An indisputable diagnosis of SFN would add a lot more weight than poorly understood and poorly recognised novel antibodies.

Ryan
 

Learner1

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Hi @Learner1,
I would suggest that if someone cannot see an autonomic specialist, they may have a better chance of POTS-awareness by seeing a 'regular' Cardiologist rather than a 'regular' Neurologist. Partly because of the nature of symptoms, but also because it is the Cardiovascular societies that have come forward and proposed the guidelines. But of course the aim should always be to see an autonomic specialist in a Neurocardiology department like we have done.
Agreed that a regular neurologist would likely be useless. A dysautonomia specialist is needed.
The evidence for autoimmune causation of POTS offered by the Cell Trend tests is not nearly robust enough yet to lead to specific treatment, outside of a small group of 'enthusiastic' clinicians. So for practical reasons I would not advise shelling out for those tests until there is good replication & acceptance, unless you have the support of said clinicians.
The dysautonomia specialist I saw was quite interested in my test, which he'd never seen before, and wants to do it on his other patients. Another patient I know saw the university dysautonomia specialist, the only other one in my region, and he too took the CellTrend test seriously and wanted to do it for his patients.
I think perhaps a better approach to be taken seriously would be to explore the possibility of Small Fibre Neuropathy involvement and general markers for autoimmunity, as per Dr Oaklander's 'apparent autoimmune' POTS hypothesis. An indisputable diagnosis of SFN would add a lot more weight than poorly understood and poorly recognised novel antibodies.
My small fiber neuropathy test was invasive, painful and negative, as were my general autoimmune markers, even though I have multiple autoimmune problems.

I did find that taking these research studies along was helpful when talking to the doctor.
 

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ryan31337

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I agree, University hospital specialists are a world apart from your regular clinician in my experience - its a shame we have to work very hard to see them in many cases. I'm aware of all that research but unfortunately it counts for nothing over here, doctors are kept on a tighter leash. Preliminary studies with low numbers have no impact on the guidelines :(

My small fiber neuropathy test was invasive, painful and negative
I'd be interested to know what investigation you had for SFN? I was under the impression that the gold standard, a skin punch biopsy, shouldn't be painful - or so they said during my quadricep muscle biopsy, so perhaps they meant relatively!

I am awaiting an alternative investigation for SFN, sympathetic microneurography. If its anything like Single Fibre Electromygraphy it should be a walk in the park. Regular nerve conduction study on the other hand...ouch!
 

Learner1

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I agree, University hospital specialists are a world apart from your regular clinician in my experience - its a shame we have to work very hard to see them in many cases. I'm aware of all that research but unfortunately it counts for nothing over here, doctors are kept on a tighter leash. Preliminary studies with low numbers have no impact on the guidelines :(
Given what I've read of your system, it seens ripe for a lawsuit against your government, a ftint page tabloid scandal, or a high quality BBC investigation. Or maybe you should find Doc Martin to help you...

I'd be interested to know what investigation you had for SFN? I was under the impression that the gold standard, a skin punch biopsy, shouldn't be painful - or so they said during my quadricep muscle biopsy, so perhaps they meant relatively!
The 6 stitches from my muscle biopsy came out nicely, and it was healed closed after 10 days with no pain at this point. The SFN was a punchout 4 inches above my ankle bone and at the base of my ankle, which has made walking and wearing shoes and sandals frustrating for 6 weeks.

By contrast, the dysautonomia testing was sn intersting experience. The setup didn't look especially expensive. There was a laptop, the sensors, a tilt table and a BP cuff, maybe $4-5.000 in equipment in all, including the computer. The doctor explained how each test tested a different component of the nervous system to find out which part was malfunctioning, and my CellTrend results seemrd to track with what he found.
I am awaiting an alternative investigation for SFN, sympathetic microneurography. If its anything like Single Fibre Electromygraphy it should be a walk in the park. Regular nerve conduction study on the other hand...ouch!
I've done one of those, too.

My impression is knowing the antibodies are causing my high BP and dysautonomia has finally explained my BP issue and allowed me to get treatment that has improved my functioning - I tolerate heat and exercise better and BP is much better controlled with a beta blocker.
 

hmnr asg

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@ryan31337 @Learner1 @lnester7 (and others )

Thank you all for the replies.

Some folks suggested autoimmune issues and I have been tested for all of them and nothing showed up (but these tests were before this recent crash, could it have changed?)

Seems others are suggesting autonomous nervous system disorders. I was tested at the autonomic nervous disorder clinic at Stanford after i came down with a case of tingling and weakness in my extremities and other weird neurological symptoms a few years after my CFS started (these neuro symptoms have since disappeared except for leaving me with trigeminal neuralgia).
Anyways the tilt table test didnt show anything. But the sweat test showed some issues:
There is evidence for mild, length-dependent small fiber neuropathy with involvement of the sympathetic sudomotor fibers.
In fact this test was repeated after a year and this issue was even more pronounced in the second test. Also my EMG studies showed mild signal attenuation:
mild, multifocal polyradiculopathy involving the cervical C6 and C8, and lumbar L4-S1 myotomes. There is very mild right ulnar mononeuropathy at the elbow by conduction criteria. There is no convincing evidence for a large fiber polyneuropathy.The multifocality suggests a process involving the root entry zone, such as seen in post-infectious conditions.
In the end the doctor was baffled but he offered me no diagnosis! he said there are issues that are in fact statistically significant but he had no diagnosis for me.

What do you guys think?

H
 

ryan31337

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Sorry to hear that you've been through the wringer without anything to show for it @hmnr asg.

It sounds as though you have significant underlying drivers that aren't going to go away, so I would keep hunting for a doctor with answers. The only things I might suggest:

1 - I understand that the time it takes for antibodies to show in other diseases (like Sjogren's for example) can be delayed by as much as 10 years after onset of symptoms. So I wouldn't dismiss autoimmunity on the basis of historical negative results. Equally, if a clinician says that they have tested "all antibodies" they are not being truthful - there are so many that we don't routinely test for because we don't understand their impact yet (if any).

2 - I'd have similar doubts over your orthostatic testing. These conditions are variable and change over time, the negative tilt table test may have been a fluke, perhaps you were better hydrated, less inflamed, the test performed too late in the day etc. etc.

3 - When you're stuck without a cure for the underlying disorder, don't dismiss the possibility of improvements offered by behavioural changes & other low-tech measures. If symptoms of dizziness and breathlessness do improve when lying down there is likely some scope for minimising them. I would consider a hyperventilation screen (non-invasive measurement of end tidal CO2), or Arterial Blood Gas analysis (usually just a small blood draw from the ear lobe). If it does show issues then respiratory physio and general awareness of dysfunctional breathing can really help, despite it not getting to the root cause or curing anything.

Ryan
 
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What do you guys think?
My first TTT was inconclusive or not done right. To be honest I had really bad OI before I was full on POTs, my doctor says the first thing you will notice is pupils abnormal reaction, So for a long time, I had all kind of random symptoms (autonomic related) before I developed full on POTs.
Now I think I always had dysautonomia (not CFS) and CFS made me worst, but if I look back and my family they had OI symptoms = We pass out on intense pain like spraining an ankle, pee too much before bed, no sweating or sweating on spots randomly for no reason.......
So There are different types of disautonomia specially with CFS, that not necersrly means you do not have OI because it is not POTs.
 

hmnr asg

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My first TTT was inconclusive or not done right. To be honest I had really bad OI before I was full on POTs, my doctor says the first thing you will notice is pupils abnormal reaction, So for a long time, I had all kind of random symptoms (autonomic related) before I developed full on POTs.
Now I think I always had dysautonomia (not CFS) and CFS made me worst, but if I look back and my family they had OI symptoms = We pass out on intense pain like spraining an ankle, pee too much before bed, no sweating or sweating on spots randomly for no reason.......
So There are different types of disautonomia specially with CFS, that not necersrly means you do not have OI because it is not POTs.
I should visit the autonomic nervous system disorders clinic again i suppose. Even if they find something, would there be a real treatment though? I am getting tired of visiting doctors and having them look at me like im a nut. It's very depressing :(

And in the meantime my girlfriend is very happy that i am not able to talk too much. She says I have finally become a good listener :grumpy:
There's always a silver lining i guess! lol


H
 
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I should visit the autonomic nervous system disorders clinic again i suppose. Even if they find something, would there be a real treatment though? I am getting tired of visiting doctors and having them look at me like im a nut. It's very depressing :(

And in the meantime my girlfriend is very happy that i am not able to talk too much. She says I have finally become a good listener :grumpy:
There's always a silver lining i guess! lol


H
If you get a good doctor yes there is treatment. If they do not have you on the right combo you insist until they do.
Beta blocker, calcium channel blocker, vassocontriction / dilation based on your case. Florinef, ivabridine... do not give up until you are stable, some plp here give up the first drug that fails, it takes a lot of try and tinkering for right combo but it is ohhhh so worth it!!!