I am really stressed out about this. I told my doctor that I thought I had POTS, she measured my heart rate whilst I was sitting there and it was 98. She said it shouldn't be that high. She said that a resting ECG had to be done first. I did it with no problems noted as we both expected. However, that had to be done first for her to be able to ask for the hospital Cardiology department to see me.
I got a phone call booking me in at the hospital to receive a letter a few weeks later saying that the Cardiologist didn't want to see me. He had then written to my doctor to say that it was just part of ME/CFS so he didn't want to see me. My Doctor was not happy with that attitude.
My doctor then had a 24hr ECG monitor on me. With those results she contacted the Cardiology department highlighting on my 24hr print out the number of Tachicardia moments and Ischemia times. Again I got an appointment booked to see the Cardiologist. Then a week later I received a letter from the Cardiologist saying he didn't want to see me. That yes I have Sinus Tachycardia but the Ischemia was just a "red-herring thing". However, my doctor said that I'd even had Ischemic times in my sleep!
The Cardiologist had suggested Beta-Blockers. My doctor doesn't want to use them because the side affect is lethergy - if I get that on top of how I feel due to M.E/CFS it's going to be hard to do anything.
Then I go and read that 20% of the deaths of ME/CFS sufferers died due to heart problems and that we should keep an eye on our hearts.
I feel so stressed and don't know what to do. My doctor has referred my results back to the M.E. specialist department to see what their advice is. I am so worried, I dare not my love to my hubby should my heart rate go too high. I'm almost too afraid to do anything.
Any advice would be much appreciated. JulieBadger
Hi Julie, can't offer you much advice, only wanted to mention one of my biggest symptoms is a weak feeling hertbeat (it has improved slightly over the past 14months, thank god!) but i used to be an athlete. The fact it feels that any activty over 100bpm would kill me is a bit disconcerting. I am arranging an echo scan, already had 24hr ecg all clear. Good thing about the echo scan is i had one carried out in 2007 when i was super fit and healthy, so it will be so interesting to compare the readings.
Did they not suggest anything to help you? I read 125 just climbing one set of stairs at home. I can even reach 125 blowing my nose 
. If I climb the stairs going into one room then turn around into another room looking for something I can read over 140.
As a kid I liked sports, swimming, sprinting and in the school hockey team. I watch my kids horse ride and swim - really wish I could even walk them to school.
Thanks for talking to me.
Hi Julie,
No, GP figures, guy with an athletes physique, 34 years old, there can't be a problem with his heart. I hope he's right, there's either a physical problem with my heart (maybe damage from virus) OR it's the energy supply to the heart that is low, probably that is more likely. Echo scan is going to be real interesting as i have healthy reading. Guess i like to know things, even though no cure feel mentally it's anther box i can tick off. Heart can repair itself. Takes time as it obviously doesn't get much rest, but it can re-generate. Glutathione depletion, chronic illness, google it, if you are deficient in glutathione ANY supplements/diet even will be almost useless in terms of healing. Having some naturopathic training i feel a little embarassed i overlooked this. Take care !
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Interesting. I'll look it up. I'm only 37 yrs old. Looking back it seams I've suffered since I was at least 14, but I only started investing my symptoms 2.5yrs ago when I started physically really down hill. Over these last two years I've continued getting worse both mentally and physically. More and more symptoms keep showing their ugly little heads. I rattle from my 16 tablets a day and hobble along on my two walking sticks or threaten to drive over toes of any unaware public.
I so want my old body back, even the state it was in 3 years ago would do me fine.
hi Julie. having been through this one, u have my sympathies. it's very frightening. however, there is a way of getting cardiology help. u will need to ask your GP to refer you to the ''Electrophsiologist'' in the local cardiac (hospital) department/unit. this is a 'specialist' in the area of arrythmia/reflex syncope/abnormalies of the ''electric conducting mechanism'' of the heart. if they don't have one in your local (hospital) cardiac unit, s/he will need to refer you to the one nearest you. there are lots of them about. the have extra ''specialist'' cardiac training in this area.
ppl that can help include http://www.heartrhythmalliance.org/stars/uk/
Arrythmia Alliance http://www.heartrhythmalliance.org/aa/uk these are helplines. they will chat it through with you. give deatils of the nearest 'Electrophsiologist ' to you etc.
hope that helps.
i'll post some more info. later.
Caitlin.
hi julie. i have just sent you some contact deatails for a number of organistaions that can help with getting you an appoinmnet with an ''Electrophsiologist'' - a cardiac consultant specially trained in anaomolies of the ''conduction mechanism of the heart''. coz i enclosed contact (NHS) details, my post is waiting to be moderated.
in CFS/ME the cardiac symptoms are due to 'mitochondrial failure' rather than due to failure of the blood supply to the heart muscle i.e ''ischaemic heart disease''. there's an abundance of mitochondria in the heart muscle due to the 24/7/365 work it has to perform.
what can help in the mean time is, to support the mitochondria by supplying an abundance of the nutrients required to fuel the energy producing metabolic pathways namely, the citric acid krebs cycle. It consists of CoQ10, Acetyl-L-Carnitine, Magnesium, D-Ribose, NADH (an activated form of vitamin b3) this is excellent at dealing with the anxiety caused by the arrythmias.
hope this helps
Caitlin
Hi Caitlone, how long you had CFS ?
No problem, it has helped me ALOT in the two and a half weeks. REALLY optimistic for the next few weeks. My white blood cells for 12 months have been low end around 3-3.5 two weeks (tried so many things) they are now more optimal range of 6.7, probably why i feel better. I was initially post viral. My eyes are still problematic in the sense the white are always red and look unhealthy, anyone else get this ? I find myself stretching them and focusing on people when they talk to me is reallt hard.
i had to giggle at this one - coz i've got the 'red eye' syndrome presently. i don't know why it happens, but suspect it's to do with getting rid of toxins. this is my first time with it. i had a b12 injection the day before it came on?
to answer ur question. i've had ME/CFS for a long time, but managed it quite well till the POTs started 3 yrs ago. i didn't know what hit me ??
btw, i've done a few months on (reduced) L-Glutatione, but not with any measurable improvement. think i respond better to CoQ10 as an antioxidant. i'm plsd. to hear it has helped u so much. it's magical when something actually works. ur response is v. marked. any ideas as to why u responded so well? i'm always curious as to WHY things help some ppl and not others. this illness is SOOOOO subjective and requires an 'experimetial' trial n error (albeit costly) approach.
Caitlin
Hi Caitlin, had the red eye thing for many months, again slight improvement but it makes me look like a weirdo when people talk to me and i struggle to focus on them, often find myself turning away for some odd reason. Glutathione is difficult to get absorbed orally. There are only two brands i am aware of that bypass this, if you haven't tried one of these chances are the product was useless. I take COQ10, only one week. I think i responded as my white blood cells seem suppressed and glutathione is WBC food. WBC seem to have went to sleep or are battle weary ? Yes trial and error, been doing it 14 months with minimal success. Determined i will get well. PQQ is another interesting supplement. Hooray for red eye syndrome.
yes, i think the WBC become 'battle worn' & stop reacting/responding. from what u say, it seems u have woken up the defence army? that's a good sign. guess, too it's a time of potential vulnerability coz when we begin to feel a little better we're tempted to get on with things as normal, when we should be resting. i used to have horendous chest infections (24 hours not stop coughing) and not a fever in sight. the GP was puzzled. couldn't understand that my body didn't have enough 'fight' in it to throw a fever. what dosage of CoQ10 are u taking? i couldn't see a dosage in their web site.
guess, in time the 'red eye' syndrome will fade. has Doc made any comments/suggestions?
Caitlin.
Maybe it would be best to try to find another cardiologist? Are you near anyone who specialises in these problems?
Hi Caitlin, had my best sleep in 14 months last night ! My heart feels like it is starting to 'come online' like the rest of me. Maybe you weren'tt aking enough, the study says those on 1000mg/day have a far better response than those doing 250mg. I only know i've had really amazing results SO FAR. I take 2 caps of COQ10 per day and 100mg UBUIQUINOL, which i also take with one capsule of shilajit (you can buy fulvic mineral supplements) research says enhances coq10 activity in cell. Well i do hope my red eyes clear up, doc just says it's a CFS symptom, two eye tests say eyes better than 20/20 LOL, opticiain told me ' we don't deal with the eye whites.' LOL
Take care
Hi Caitlin
Thank you so much, I'm in the UK so I hope the moderators allow your previous reply through. If not at least I now know about an Electrophsiologist.
I'll also look into those supporting supliments listed in your last paragraph too.
I don't have the red eye issue at all. I've had ME/Cfs for over 23yrs now. Mine was developed after an illness. Maybe symptoms are subjective to what started the ME/CFS?
Thank you so much for replying to me x
Hi Fidd,
Unfortunately I don't think so. I live in Norfolk, UK, a bit remote. Due to the ME/CFS I can't travel for more than 1hr per day without bad consequences which last for 3 days following the journey.
I can have access to Bupa through my hubby's work system, which I have used once before. I am thinking that route depending on what the ME clinic say to my results so far.
Some of the Bupa consultants work at the hospital as well, so i don't want to pay the £200 Bupa excess to get exactly the same consultant who then again gives me the same reply.
I had that last time. The Bupa consultant looking at my back basically told me I was too physically sensitve and that there was nothing wrong with my back. I then a few months later went to the NHS hospital saying I did not want to see that same consultant and had Fibromyalgia confirmed. I was so cross that the Consultant I'd seen through Bupa was a Fibromyaglia specialist and he hadn't recognised the very condition in me.
Life is difficult with Me/CFS not only coping with the symptoms but with coping with the specialists too!
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hi Julie. if u ''e'' me on the (private) off-line facility, i can repeat the info. i don't know why they haven't allowed it through coz it was all NHS (non advertising) info. i.e. names/contact details of (NHS) support organisations who work in tis area.
Caitlin.
wow this is brilliant, I am going to look into this today. I sure hope this is my answer. I get back to you ... x I have also just tried to message you. If you haven't received anything please tell me. P.S. At weekends I only occasionally check emails, weekdays most days more than once. x