Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Tulip, May 24, 2011.
Hi Tulip, I do wonder when it will be time to start lodging formal complaints against doctors for this kind of thing. If we all did it, every time, maybe they would get the message. I am not talking legal action, just using official channels, whatever they might be. I have been thinking about this for some time now. Maybe such a complaint could have abstracts of the papers on cardiac abnormalities etc if the problem is a cardiac one. In other words, make it plain you know they are dealing from ignorance, and wont take it any more. Just an idea, you might like to talk it over before doing it though, I am not sure what the downside would be. Bye, Alex
Tulip I am so sorry to hear that! I've been dealing with a useless cardiologist and cardiac unit at my local public hospital while trying to get my dysautonomia/POTS properly diagnosed.
I wasn't aware that bradycardia was normally due to a lack of high impact exercise!?!? Usually a low resting heart rate is a sign of extreme fitness!
Did he do any cardiac investigations? Was he a private cardio or can you get some covered by medicare?
It does sound like there is definately something going wrong cardiac wise. I have problems with low blood pressure too, doctors only seem to care though it its high not low. Even when I tell them I'm symptomatic.
Do you have a good supportive GP? They might be able to help you with treatments/investigations. My GP currently has me on a low-dose betablocker and florienef for my POTS while we try to get me in to see a good Dysautonomia specialist.
I dont know much about treatment for svt. Treatment could be tricky, like the cardio said, as you have low BP & bradycardia.
I had a similar experience when seeing a cardiologist at my local public hospital. He seemed to actually listen and be sympathetic when I was describing my POTS symptoms, but after seeing the diagnosis of 'CFS' on my referral sheet he wanted me to go for an exercise stress test and implied that I was exercise avoidant! He said "I dont think there is anything wrong with your heart, but we'll do the exercise test just so that YOU know how much you can REALLY do". Jerk.
Speaking of official channels Alex3619, I think at least public hospitals have a complain process thats official. I guess there is also the AMA and separate RACP bodies (e.g. certified specialists).
Tulip, because I (and most of the people here) have already gone through this, we understand very well that your cardiac symptoms are not due lack of exercise. We know that CFS causes them. So your doctor is wrong here (or he lies to you because he knows he can do nothing for you). However, If he has done cardiac investigations on you (did you have electrocardiogram?), and said that your heart is ok, I suggest you believe him about this, because he does know better. He just knows that heart medications won't help you. It's the same as when Lyme disease causes Cardiac irregularities, there's nothing wrong with patient's heart. Lyme is what needs to be treated and not the heart.
Sorry about this terrible abuse and frustration you had to go through. There is no excuse for it.
I had a similar experience a few years back with heart problem symptoms.
We have two strikes against us #1 ME or CFS and #2 we are women who rarely get taken seriously.(I'm assuming here that you are a female)
I just came across an article about blood volume enhancement. This raises the blood pressure.
"drink a lot of water and add a gram of salt a day" and/or drink 12 oz can of V8 vegetable (tomato based) juice. It contains 700 mg of sodium and an equal amount of potassium (which is crucial) it also contains some calcium.
The person giving this advice is an alternative practitioner and has CFS herself with very low blood pressure.
With the advice above she was able to raise her blood pressure to normal values.
While doing this, you should check your blood pressure closely as to not overdo it and achieve high blood pressure.
This can be done by going to your gp periodically or have your own blood pressure kit. (which I think is probably advisable.
I don't think that there's anything new here. I always knew that increasing salt intake will raise your blood pressure.
It just gives you a system of how to go about it.
The problem with western Medicine is that they totally ignore low blood pressure. They only worry when it get's too high.
Best of luck,
Welcome to the" I saw a bad cardiologist club". I saw three of them, including one at the Mayo Clinic.
I went to one after my blood pressure had dropped to 80/50, and my pulse was 50. i was barely able to stand, or even stay awake. After doing every test that she could think of, she sent me home with a prescription for Cymbalta!
A couple of things may help you. I had some success with compression stockings. keeping your feet up helps you live with low BP.
Increasing your blood volume also helps. Gatorade, or other liquids may help.
I took Midodrine to increase my BP, and that helped me gain back some of the weight that I had lost. It increased my energy a little.
My cardiac problems went away after I took Valcyte.
My best advice would be to try to interview a doctor before you get an appointment. It is very possible that you will not find one in your area that understands CFS, but at least you will know before you waste your money on an idiot. A knowledgeable GP may be better than a clueless cardiologist.
I hope you find one.
Good ideas there Neilk and John
I agree - the medical profession are not interested in you if you have low blood pressure as a general rule. Same if you have a sub normal temp.
An idea for you Tuliip - along the lines of what Alex proposed.
Write a letter to your cardiologist
State briefly what ME is and what it is not
I can provide you with an excellent article written by Dr Spurr of the John Richardson Research Gp in the UK. Perhaps you would like to send it to him?
This article clearly states what ME is and its association to enteroviruses and how their research shows that 53% of deaths in patients with ME were cardiac related.
Dr Spurs article states if chest pain is present then Troponin T may be elevated in ME patients and
On ECGs in the chronic phase he states fibrosis can act similar to A/V node as a capacitator and initiate ectopic beats.
I can also provide you with literature/research findings on cardiac abnormalities in ME if you would like them also.
I found this from wikipedia:
Set the above out in your letter and then state:
''Dr X I note that there may be a number of causes for my bradycardia.
As you did not undertake testing to determine possible underlying causes, I will be making a further appointment with your office for a thorough cardiac assessment.
I really have no desire to take this to further, but I do expect a thorough medical examination in exchange for your fee, which I undertake to pay, once I have been given me a thorough cardiac evaluation.
I recently read a meta analysis undertaken in 2009 identified cardiovascular illnesses were among the top 5 missed diagnoses. * I do not wish to find myself in this statistic or in the 53% of ME cardiac related deaths.
If you cannot presently assist me, I will understand, but it would be my expectation that you refer me to a colleague within your practice for an immediate thorough cardiac assessment without further delay.
If you are not willing to assist me at all, I will need to reassess my options.''
Or something along those lines. If you do not wish another consult with this fellow, then use the above as justification for not paying his account.
In some ways, if you can get him to do the assessment or one of his colleagues, they wont dismiss you so easily and should start looking at the tests and the results. Otherwise, you might have to go through the same scenario with a new cardiologist, unless you can get a referral to one that is not so dismissive of the illness.
At least if you draft this letter Tullip, you will have a pro forma you can use when seeing other doctors - you will just need to slip in other medical issues and reference material.
* McDonald CL, Hernandez MB, Gofman Y, Suchecki S, Schreier W. (2009). "The five most common misdiagnoses: a meta-analysis of autopsy and malpractice data". The Internet Journal of Family Practice 7 (3). http://www.ispub.com/journal/the_in...analysis-of-autopsy-and-malpractice-data.html
We'd all be rich if we had back every dime we wasted on quack doctors. I've been to many, and where it was a severe financial hardship to pay them their fees. And then they would act like I was only in there for attention. They didn't get it that it was that hard to come up with the money just to go in there.
My advice, you need to raise that blood pressure and it will help. The heart stuff is from the POTS, it's part of it. When the pressure drops, you're not getting enough blood pumping through the heart. I have damage to the left ventricle of my heart from it.
My mom went through terrible arrhythmia issues about 3 years ago. The cardiologists were clueless about CFS. She did get an ablation, which helped a bit, but not near enough. She finally pulled herself out of it by diligently doing the Sinatra protocol. She did find some info by Dr. Cheney that described cardiac issues in CFS.
Sorry to hear about your experience. You should not have to put up with that. I would encourage you to write a similar letter to the one I proposed Tuliip write, the next time you find yourself in a similar situation. You see, if we dont take action like this - these doctors are going to continue to ''not get it''.
I would love to read Dr Spurs article, too, please, if that is possible.
The hospital ECG machine showed that I have 'cardiac' issues (don't know what), but the ME diagnosis has blocked further assessments.
Before my BP shot skywards, I used to have very slow heartrate when at my worse (about 30) and my BP would be in my boots. It was never investigated though.
I would like certainly like to read that article!
Oh I have a list as long as your arm of totally idiotic cardiologists!
A friend of mine (no CFS, fit young man of 20) was told most emphatically that his bradycardia could not possibly be improved with exercise and he was given a pacemaker (which he hated btw and later had removed). I checked onthe Internet and found quite a few sites saying that you cannot do exercise or anything else to improve bradycardia.
As for low blood pressure, there is also nothing they can do. For OI you can take steroids but I am told they don't work too well anyway and in CFS there is a debate about whether they are good or bad for you. Personally I took steroids for a while and could not even stand up.
I have been reading about low blood volume and how to raise it. Apparently having low cortisol is a major contributor to low blood volume, as it regulates the fluid content and distribution in the whole body. It uses potassium inside the cells and sodium outside them to make sure they are as "bloated" as they need to be and it makes sure you only urinate out as much water as you don't need. If your cortisol is low, there is nothing doing this job and nothig controlling your blood volume or overall fluid retention level properly.
Apparently there are some nutrients you can take to help the adrenal gland work better. I have just embarked on experimenting with this so I don't know how effective they are with CFs, but you have to take pantothenic acid 1500mg daily, vit B6, vitamin c at the highest dose your intestine can stand, and vitamin E. And you have to eat as much salt as you can bear. Apparently taking potassium (which I took for several years hoping to raise my blood pressure) actually makes it worse, so should be avoided. The other thing that is supposed to help adrenals, and which I can guarantee gives instant marvellous results, is Siberian ginseng.
Every Cardiologist and MD treating CFS patients should be issued with a copy of Dr Sarah Myhill's explanation of what the disease is, how the heart is affected, as well as all the other vital organs such as the kidneys,lungs and liver.
Know how it feels, Tulip. to have cardiac symptoms either minimalized or have antidepressant reccomended. Remember Cheney research on cardiac issue. Am in mid-move to another apt but can google it. Am overwhelmed at times with appearance of new symptoms or relieved at ones not present (yet) Problem being, again the lack of education with drs and our illness. Am on Coreg for my heart symptoms and recent local doc paid attention when he read my high blood pressure. Pre-illness was always low. How can it not be influenced by stress response. The release of cortisol, flooding the system without a quick shut off valve. I know that my current heart symptoms are stress related to awful rental and shock of being told that place is being sold and have to move 4th time in that many years. Who addresses those issues of disabled? Hope that you find relief of your symptoms soon, Cheney was one who I saw before his surgery and why I began taking Coreg. SueC
Thanks everyone, it's sad that this situation is so common
Edited as this thread pops up too obviously in google.
You can also try a Google Site Search
Separate names with a comma.