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POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

Ecoclimber

Senior Member
Messages
1,011
Didn't know quite where to post this but since this thread is related to Postural Tachycardia Syndrome, I put it in here

Front. Neurol. | doi: 10.3389/fneur.2014.00118
Sleep disturbances and autonomic dysfunction in patients with postural orthostatic tachycardia syndrome
Julia Mallien2, Stefan Isenmann2, Anne Mrazek2 and Carl-Albrecht Haensch1*
  • 1Department of Neurology, Maria Hilf Kliniken Mönchengladbach, Germany
  • 2Department of Neurology, HELIOS Klinkum Wuppertal, University of Witten/Herdecke, Germany
Many patients with Postural Tachycardia Syndrome (PoTS) suffer from fatigue, daytime sleepiness and sleeping disturbances.

The objective of this study was to compare subjective and objective sleep quality of PoTS patients with a group of healthy controls.

All Patients completed a Pittsburgh Sleep Quality Index questionnaire and the Epworth Sleepiness Scale. The patients sleep architecture, heart rate and heart rate variability measurements were taken during one night at the sleep laboratorium. All Data was collected at the Sleep Unit, at Helios Klinikum Wuppertal. 38 patients diagnosed with PoTS were compared to 31 healthy controls, matched in age and gender.

Patients with PoTS reached significantly higher scores in sleep questionnaires, which means that they were more sleepy and had a lower sleep qualitiy. Polysomnography showed a significantly higher proportion of stage 2 sleep.

The results of heart rate variability analysis in different sleep stages confirmed changes in autonomic activity in both groups. PoTS patients, however, showed a diminished variability of the LF band, HF band and LF/HF ratio in different sleep stages.

It can therefore be gathererd that PoTS could be considered as potential differential diagnosis for sleep disturbances since PoTS patients had a subjective diminished sleep quality, reached higher levels of daytime sleepiness and showed a higher proportion of stage 2 sleep. PoTS patients showed furthermore a reduction of LF/HF ratio variability in different sleep stages.

 

Leopardtail

Senior Member
Messages
1,151
Location
England
Daily Telegraph 17 June 2014

'A third of ME patients could be treated'


A massive thanks to @Bob for spotting this one so soon and before editions hit the shops. I will definitely be making the trip to grab a copy as soon as I can :)

Never thought I'd see the day when a non-sensational* ME headline hits the front page of a serious newspaper!

All we have thus far is this image from Twitter I am afraid. I'll populate as soon as possible (or others can if they get there first - or are better able than me):

https://mobile.twitter.com/politicshome/status/478656080026038273

It's to the right of the main photo of the Royals :)

Well done Professor Newton! :balloons::balloons:

(*non-sensational because it's Julia Newton who I respect a great deal, though of course I don't know the content of it yet.)
full article online: http://www.telegraph.co.uk/science/...-one-third-of-patients-wrongly-diagnosed.html
 
Messages
55
Location
London, UK

I'm not sure what this actually adds to the original Telegraph article on 17 June. Am I missing something?

Incidentally my POTS is only partially resolved by treatment - I still have tachycardia (though lower than untreated) and my BP is abnormally low, dizzy on standing still, etc. It's just not quite so bad. I don't think it's as easy as saying POTS is treatable in all cases.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I'm not sure what this actually adds to the original Telegraph article on 17 June. Am I missing something?

Incidentally my POTS is only partially resolved by treatment - I still have tachycardia (though lower than untreated) and my BP is abnormally low, dizzy on standing still, etc. It's just not quite so bad. I don't think it's as easy as saying POTS is treatable in all cases.
The first link posted in the thread only showed partial information, that link goes straight to the full article.
You will probably want to read the Julia Newton study when it publishes. It discusses various approaches to POTS/OI and who they are suitable for.
 
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13
I have POTS too and it is controlled by betablockers and occasional use of Florinef plus extra sea salt in my drinks. However it has done nothing to help me be able to walk for more than 20/30 minutes at a time and I still will crash if I overdo it. Also my bp RISES with POTS not drops but that might partly be due to the fact I have adrenal insufficiency and have to take a daily dose of 6mg Prednisolone.

Previously, before taking the steroids my bp was very low and would drop on standing but this doesn't happen anymore. I still get attacks of dizziness but this is more related to severe migraine or blood sugar issues.

Therefore I think that POTS can be part of the problem for many of us, unfortunately it isn't the complete answer by any means. Still I think its great Professor Newton is doing this research and it is being reported in the Press. Hopefully she will come to realise that not everyone with ME/CFS who has POTS is cured by her treatment. That would be a real step forward.

Pam
What is the test for Potts please? Is it a blood test; can my doctor do it?
 

Leopardtail

Senior Member
Messages
1,151
Location
England
What is the test for Potts please? Is it a blood test; can my doctor do it?
The simplest test (your doctor could do it, but is more likely to refer you) is to take your blood pressure and pulse while lying down, then ask you to sit up rapidly and repeat. The manner in which it varies will give a 'first clue' as to whether you might have OI, POTS or NMH (different forms of a similar problem).
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
The simplest test (your doctor could do it, but is more likely to refer you) is to take your blood pressure and pulse while lying down, then ask you to sit up rapidly and repeat. The manner in which it varies will give a 'first clue' as to whether you might have OI, POTS or NMH (different forms of a similar problem).
Getting these tests done in the doctor's office is good advice. It can provide a "first clue" as @Leopardtail says.

But just to add a bit more information for @kevinj and others who are brand new to POTS and NMH, there are some patients (I think mostly NMH patients) who have normal results in the doctor's office but have abnormal results on a tilt table test.

So, the doctor also needs to take the patient's history since that can be just as important a clue as the testing. That is, does the patient have symptoms that sound like Orthostatic Intolerance?

There are many symptom lists but here's a link to one - http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 (scroll to the bottom of this section to see list of symptoms)
 

lookinglass

Senior Member
Messages
115
Location
Tenerife
I tried to post again, modifying the website addresses so that they wouldn't trigger a spam-catcher, but still no joy.

Will others please try to post, and push this idea of donating? These articles really are a golden opportunity to spread the word that biomedical research is going on and that patients can help fund it. Many ME patients aren't part of the community and don't know that they can help.
Sasha

8 years ago in February my husband took me to Jamaica where we stayed for a month in a charming north coast small Aparthotel. The receptionist took us to view the poolside apartment which had its windows curtained when I entered the room, followed by my husband.

I took one breath and almost choked. I could not breathe and had to rush from the room. I do have slight asthma and a night cough so I assumed it was this that was reacting with the very powerful bug spray which the receptionist admitted had been liberally used and recently. We said if the room was aired properly we would take it.

A month later on arriving back home in Spain I began to feel odd. My feet were heavy, I couldn't walk easily. I had a mild fever and night sweats and thought I may be coming down with flue. In April I still felt unwell and then came down with a very bad bronchial infection that required antibiotics. One day in May, at dinner in a restaurant, I became suddenly very unwell. Nausea, incredibly weak and heavy, could not walk and had to be almost carried to our car to go home. At home I began to shiver as if I had Malaria and was freezing cold. After 2 days I made the first of many future visits to my brilliant holistic GP who was English, in order to eliminate with blood, ecg tests urine etc. Palpitations were soon a frightening daily occurrence along with vomiting frequently, diarrhea and an inability to eat or keep anything down. I needed to rest and sleep and could barely walk. After a month of negative test results and ecg's he diagnosed me with M.E. Later bad attacks resulted in near fainting fits and POTS was also diagnosed. It took two years of daily vitamin and magnesium injections before I felt IT was sightly losing its grip. This week I had a POTS attack and ended up in two Spanish Hospitals in Tenerife where we now live. Out of 6 doctors who consulted me after brain scans and more xrays and blood tests they allowed me home with 6 stitches in a bad facial cut from my fall on to hard unforgiving tiles. Not one of these doctors had ever heard of M.E. even though I spelt it out for them. They knew about CFS but only vaguely. They thought as I am now 74 that I may have had a stroke but the scan proved clear.

My M.E. has not completely gone for good. And I am convinced it never will. I still get my bad days, and my good days. But I am also convinced of what you say. That POTS is all just a part of the whole. In my case I cannot help thinking...was it that horrendous bug killer spray that poisoned my system and lowered my whole immune system also.
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Really sorry to hear about your awful experiences, @lookinglass. Must make it even harder to be somewhere where MR isn't really on the radar.
 
Messages
1
The more I think about my personal illness the more I suspect I suffer from a type of dysautonomia rather than ME/CFS. My main symptoms have been headaches, stomach issues, heat intolerance, fatigue and nausea; all of these have always been much worse in the morning. I've never experienced a 'crash' that I hear so much about and I seem to be on steady incline of improvement intermixed with infrequent and mild flare ups.

My illness was triggered by vaccinations so it may well be some form of post viral/infectious dysautonomia. I think that the trouble here is that things such as ME/CFS,POTS and dysautonomia as a whole are not taught in medical schools fully even today so some doctors simply pick and choose the term they want when in reality each has its own unique set of diagnostic criteria.

- what vaccine do you think triggered this? did you report it? I suspect my dd developed ME/CFS/Pots from HPV vaccine. POTs is not well enough categorized for research to draw conclusions.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
- what vaccine do you think triggered this? did you report it? I suspect my dd developed ME/CFS/Pots from HPV vaccine. POTs is not well enough categorized for research to draw conclusions.

I noticed that @Legendrew hasn't been here for a few months so if you don't get an answer soon this may be why.