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I think I qualify for this DX too. I had a stress ECHO June 2010, with mild/minor abnormalities all over the place, and a conclusion of “cannot rule out cardiomyopthy at an early stage”. Also says: “Diastolic dysfunction; mildly abnormal relaxation without significant increase of left atrial pressure.” If you want to know more from this report, just let me know. I am having my next ECHO in Sept.. just a couple of weeks away.
Hi Ourfullhouse, Yes, I think we’d all like to know how your echo goes!
So, overall, it would seem that CCSVI treatment and/or Diamox have reduced the pressure going into my heart and so where things were starting to enlarge, now they are fine and even the pulmonary pressure is back to normal.
I also wonder if as my veins restenose if the pressure will go back up again? Or, is the Diamox having more of an effect than the CCSVI treatment? Lots of things to wonder about! =)
Anyone else have a before and after CCSVI treatment ECHO done and were there any differences?
FASCINATING!! Diamox can lower our BP, so perhaps it helped with everything (and I wonder if that is why your BP changes were “blunted”?
This is great news, though, I think. If you knew how many patients I speak to who develop congestive heart failure and worse, it would surprise you. But this gives us soooo much hope. YEA!!! Thank you so much for sharing this, and I’ll be dying to know if anyone else noticed this. I am not due for an echo for a few months… I can hardly wait!
Big hug,
DianaI am very curious what was/is of more help, CCSVI treatment or the Diamox. Or, is it a combination of the two?
Seems interesting that Diamox would reduce BP, because for me, part of my POTS/autonomic disorder is that my BP’s are/were low. Since being on Diamox my BP’s are actually in the normal range now more of the time. So maybe what Diamox does (in that it takes some of the pressure off our brains and then some of those signals that were doing crazy things now improve) is help us have normal BP’s and for those who were running high BP’s, theirs go down and for people like me with low BP’s, ours go up?
Weirder yet is that when I’m pregnant my BP’s are even LOWER than when I am not pregnant. I would run 70/40 or less when pregnant. Kind of like my cardiologist, my OB is used to having to deal with high BP’s in pregnant patients, not low BP’s. =)
I am very curious what was/is of more help, CCSVI treatment or the Diamox. Or, is it a combination of the two?
Oooh, I love a puzzle! I’m just guessing on this one, OK? It may be both, but I’m leaning more towards Diamox! By taking Diamox, it allows your brain to float better, taking pressure off of your vagus nerve (and other cranial nerves below it). If the brain was compressing it hard enough, it would cause reflex low blood pressure. Did you hear that many of us go into neurogenic shock when we lie on our backs, likely from the compression of the vagus nerve? That doesn’t happen to folks with M.S. who DON’T have EDS, yet both groups have CCSVI.
CCSVI likely takes some pressure off of the vagus nerve, but works by making the vein smaller and by lowering the pressure in the vein. Helpful, but not as much as getting the brain OFF of those nerves!! Pregnancy — who knows? EVERYTHING changes in pregnancy, from our blood volume to the content of our blood, so all bets are off. 🙂 Diana
Yes, I was recently diagnosed with mild left ventricle dysfunction. My ejection fraction was 45% and my heart was enlarged. I attributed this to the ASD (atrial septal defect) that I had repaired at age 16. However, when I took my two boys (age 9 and 12) in to the cardiologist they both had low ejection fractions too. My youngest also had a small ASD and his ejection fraction was 48%. My youngest is awaiting a genetic work up. We are going to the genetic in June. We are new to all this. We thank Dr. Diane for her study we would have never put the pieces together without her.
Hey, you’re welcome! Please keep a close eye at Prettyill because I believe I figured this out and will start a registry (God willing) so we can all have the same blood test at the same lab to confirm it. Then, I REALLY WANT us to try a medication that has rocked my world! (I HAD to try it! Now my kids are on it, too. But we need to do the blood test first to “prove this” to the doctors. Cool? I put my thought process on a poster for ISNVD. The same thing happens to patients with multiple sclerosis. You can see this cool poster (which I got to present to DR. ZAMBONI — the man who “found” CCSVI!) here: http://bit.ly/GXUbWo Now you can see how my mind works. ha. 🙂 Diana
YES, I had a similar experience. I accidentally found out that I was Dxed with LV diastolic dysfunction when I asked for a report of my echo. No one thought to tell me either 🙁 I came to an enlightening realization about this presentation that I want to share in hopes that it will help others.
At the time I presented with LVDD; I was having a reaction to a beta blocker that I had recently been prescribed for severe Reynaud’s. I should have known better, BB’s and I don’t get along well. My allergic reaction presented with a numbness in my chin, that progressed up my face and into my mouth. Once my lips, and throat began tingling and going numb; I finally realized I was having an allergic reaction. I stopped the BB and had the echo redone a few weeks later- PERFECTLY normal!!! In my case, the LVDD was the manifestation of stirred up mast cells.
BTW, I am DXed with MCAS, POTS, NMH, and an unknown connective tissue disorder (most likely EDS III.)
Julie
YES, I had a similar experience. I accidentally found out that I was Dxed with LV diastolic dysfunction when I asked for a report of my echo. No one thought to tell me either 🙁 I came to an enlightening realization about this presentation that I want to share in hopes that it will help others.
At the time I presented with LVDD; I was having a reaction to a beta blocker that I had recently been prescribed for severe Reynaud’s. I should have known better, BB’s and I don’t get along well. My allergic reaction presented with a numbness in my chin, that progressed up my face and into my mouth. Once my lips, and throat began tingling and going numb; I finally realized I was having an allergic reaction. I stopped the BB and had the echo redone a few weeks later- PERFECTLY normal!!! In my case, the LVDD was the manifestation of stirred up mast cells.
BTW, I am DXed with MCAS, POTS, NMH, and an unknown connective tissue disorder (most likely EDS III.)
Julie
Thank you for sharing that important information, Julie! For me, beta-blockers cased severe depression (I tried 5 of them!). Then I buried them in my backyard. 🙂 Did you see on the website under “handouts” my poster presentation about the cause of LVDD? It involves some of the cytokines the mast cells spit out. I am SO GLAD you figured that out! I’ve heard from a couple of patients that their LVDD is REVERSING with mast cell meds and CCSVI. I heard from one patient that her PULMONARY HYPERTENSION is reversing. We’re not sure if that is due to Diamox or mast cell meds. Either way, how great is THAT?!
I think I can speak for us all in saying “welcome”! Big hug, DianaI was thinking about how my ECHO improved since having CCSVI treatment and being on Diamox and it got me thinking about how at my eye appt things were improved also. My vision is a little beter and the astigmatism I had in both eyes is now gone. ??? Can that happen from a reduction in pressure in my head,eyes, vascular system? Dr. Diana?
My pressures went down also, but I expected that from being on the Diamox. =) I figure that can only be a good thing, since my grandmother had glaucoma and my dad has low pressure glaucoma (that took part of his visual field before they were able to DX it).
My doctor noted drusen in both eyes but said that it is a common finding in patients with EDS, so he wouldn’t worry about it. If I didn’t have EDS he would be concerned about macular degeneration. Then I read Dr. Driscoll’s EDS Eye Dr. appt handout and it states that EDS’ers maybe more prone to macular degeneration. So, now I’m confused.
So, some things improved, but now I have drusen. Hmm.
LV Diastolic Dysfunction is a feature of ‘CFS’. Dr Paul Cheney in America has done lots of work on this exact phenomena this thread is about! In ‘CFS’ he theorises it’s to do with lack of ATP/Energy. In otherwords the heart is too weak to pump and so when people are upright the ‘CFS’ patients squeeze their LV far too hard to compensate. He did some echocardiograms showing this. There’s also a good research on ‘CFS’ that shows non cardiac disease cardiac dysfunction. Remember that many with ‘CFS’ are diagnosed with POTS too.
”The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients. Post exertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. Source: Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome.
”The mean values of cardiothoracic ratio, systemic systolic and diastolic pressures, LV end-diastolic dimension, LV end-systolic dimension, stroke volume index, cardiac index, and LV mass index were all significantly smaller in CFSOI(+) patients than in CFSOI(-) patients and healthy controls, and also in OI patients than in controls. A smaller LV end-diastolic dimension (<40 mm) was significantly (P<0.05) more prevalently noted in CFSOI(+) (54%) and OI (45%) than in CFSOI(-) (5%) and controls (4%). A lower cardiac index (<2 L/min/mm(2)) was more prevalent in CFSOI(+) (65%) than in CFSOI(-) (5%, P<0.01), OI (27%), and controls (11%, P<0.01). A small size of LV with low cardiac output was noted in OI, and its degree was more pronounced in CFSOI(+).
Source: Small heart with low cardiac output for orthostatic intolerance in patients with chronic fatigue syndrome.Also, I think this ‘torsion’ finding below is also possibly mitochondria related. As it takes more energy to ‘relax’ the cardiac muscle than squeeze.
”Patients with CFS have markedly reduced cardiac mass and blood pool volumes, particularly end-diastolic volume: this results in significant impairments in stroke volume and cardiac output compared to controls. The CFS group appeared to have a delay in the release of torsion”.
Source: Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging.Also see:
Causes of Death Among Patients With Chronic Fatigue Syndrome Health Care for Women International, 27:615–626, 2006
DOI: 10.1080/07399330600803766Download: http://www.ncf-net.org/library/CausesOfDeath.pdf
Why myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative and nitrosative stress (IO&NS;) pathways may explain cardiovascular disorders in ME/CFS
Michael Maes and Frank N.M. Twisk
Activitas Nervosa Superior Rediviva Volume 51 No. 3-4 2009Download: http://www.rediviva.sav.sk/51i34/106.pdf
Hi, I was just about to add about Dr Cheneys Left Ventricle diastolic dysfunction found in CFS. He is one hell of a dedicated physician. One of the truely smart “thinkers”. He did a PhD in physics b4 doing medicine – that in itself makes his mind work differently. He usually ends up seeing patients who are the illest of the ill. He spends days seeing them. V high costs and some semi out there treatments – but all based on great science. Someone to try to see Diana.
Jill
I have EDS. Dysautonomia, undiagnosed but strongly suspected by me (the one who lives within the ‘shell’). CFS was suggested by my genetic doctor as well as his confirmation that my formally diagnosed on paper: fibromyalgia and neuropathy are common in EDS. So is IBS. Essentially, my EDS ‘umbrella-ed’ many of my previous diagnoses.
My echo:
1. Mild diastolic relaxation impairment
2. Global hypokinesis
3. LV function is severely depressed, ejection fraction 25-29%
4. RV systolic pressure 10mmHg (whatever that means, probably normal)
5. Mild mitral regurgitation
6. Mild tricuspid regurgitationThen thoracic MRI, prescribed by cardiologist raised my EF as high as 52%.
Holter monitor showed: random arrythmias, tachycardia, brachycardia. I was told that my heart is stable and results weren’t reviewed with me. My genetic doctor says that regardless of whether or not my heart is stable, I still have cardiomyopathy as well as regurgitations – and something is wrong with my heart. So many other problems that I’m basically ‘chasing my tail’ and not focused on my heart anymore. No, I do not want CHF! Life is, by far, difficult enough. My grandfather had acute CHF and it was really tough. I suffer chronic suffocating exhaustion that cannot be remediated by any means and, for a time, was labeled as having CHF. At this point, I am not sure.
Are these heart problems related to EDS? Just thought I’d compare notes. Oh, strangely, I had to track down my echo weeks after it was performed and figure out the results myself – others have mentioned this. Doesn’t this seem odd? I was appalled because the word ‘severely’ was contained in my echo and nobody bothered to mention anything about it. Odd, very odd.
Just DX’d with left ventricular diastolic dysfunction. Add me to the list. Do any of you have issues with edema?
Issie
Hi, I’ve not been diagnosed with LVDD yet but have suspiscions of it. My chronic fatigue doctor has said this, when explaining the level of my mitchondrial dysfunction, “The heart of course requires a generous supply of energy and when this is impaired this can result in atypical chest pain and palpitations. Poor energy delivery to the heart will result in a low cardiac output”
I do have edema, constantly around the ankles, sometimes above my feet and my toes are always like little sausages. I used to have it up to halfway up my calves too but having worn support hose 24/7 for the past almost 8 years has helped this to subside. I do awaken with swollen hands though, it looks like I have boxing gloves on and it’s impossible to make a fist. This disperses as the morning goes on luckily.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.Hi,
My 17 yr son was diagnosed with POTS after complaints of severe symptoms (dizziness, lightheadedness, syncope, faded vision, inability to focus… also extremity cap refills > 5 secs with dependent venous distention).
His 24 hr Holter monitor showed:
Sustained bradycardia in the 40’s while sleeping and severe tachycardia in the 170’s when standing.He was put on Metoprolol 25mg PO Q AM.
His Echo showed:
Grade 3 LV DD with normal EF.
RV and RA enlargement.
Mitral, tricuspid, and pulmonic valves regurgitation and insufficiency.We have a follow-up appt with the Cardiologist scheduled in 1 wk from today.
I am a RN (12 yrs now) who has worked in Cardiopulmonary for over a yr. and have never seen – or heard of – a teenager or adolescent with this degree of heart disease, nor am I able to find any references in my research except some vague statements about cardiomyopathy and infection as causes of LV DD. (We can safely rule out the primary causes of HTN and DM.)
Garrett did have a severe case of Salmonella related to sushi that he ate for his 10th birthday and was hospitalized for dehydration and hypokalemia. We never had a retest to check to see if he was free of the bacteria, which I am told now that we should have.
My fear is that the Salmonella infection became systemic and resulted in Myocarditis which has lead to this progression of symptoms over the past 7 yrs.Anyone know anything at all about LV DD in children?
Or if POTS can result from this degree of LV DD, or if it is a separate condition entirely.(I am certain that the RV/RA enlargements are due to compensation for the LV dysfunction and that the valve inefficiencies are due to the abnormal compensation mechanisms.)
Any insight at all will be greatly appreciated <3
Well in that case I would like to tell you that you contact cardiology specialist Dr. Laman who is helping people to fight in physical, emotional and spiritual heart problems as well as treating those people who are suffering from lot of stress now a days due to some or other reason. I haven’t suffered yet and even no one is suffering in my contacts.
My personal opinion is that there seems to be a common association between LVDD (Left Ventricular Diastolic Dysfunction) and POTS (Postural Orthostatic Tachycardia Syndrome).
Here’s a good, nay excellent (but long!) video by Dr Paul Cheney on LVDD:-http://www.cfids-cab.org/MESA/CFS_Dist.htm
For those of you new to the site, you have to cut and paste this link into your browser, to watch it.
Regards
Barbara
(UK)
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