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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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tilt table test concerns

Messages
56
I'm having a tilt table test to figure out if I have POTS soon. My period is super irregular so I don't have them every month, but I'm noticing signs that I might be in the pre-menstrual / luteal phase and that a period is impending. I'm concerned that the hormonal changes (whether I'm in the pre-menstrual phase or menses phase) will affect my results. Does anyone know if that can happen?
With my orthostatic blood pressure and heart rate readings at home, I've been told that there is no doubt that I have POTS. I suppose my concern is that if I do have POTS, and the tilt table test results are falsely negative, that I won't get the chance for treatment that I need. My symptoms haven't been taken seriously in the past and it would really be detrimental to get a false negative.
Also, I occasionally have "white coat syndrome" where my blood pressure goes up when I'm really anxious/feeling threatened. So I'm a little worried that will happen during my test. Does anyone know if the staff account for that, or how that can be prevented?
 

alkt

Senior Member
Messages
339
Location
uk
you could arrive early and spend ten minutes doing relaxation exercises .I find breathing in slowly an exhaling slowly helps in calming myself.
 

LINE

Senior Member
Messages
841
Location
USA
This may not answer your question, but I think it is worth noting. POTS is merely a sign of adrenal exhaustion. The adrenals kick in when faced with the change you encounter in the test, when they are exhausted then you get noticeable results.

The adrenals are going to be tired due to active immune responses, toxins and the emotional drainage caused by ME. I used specific nutritionals such as pantothenic acid, vitamins b2, b6, magnesium, vitamin c and others. Adrenal support is important.
 
Messages
56
@alkt -- thanks, that's a good idea!

@LINE -- What are your references? I don't doubt that adrenal maladaptation is a contributor, but I don't think it's accurate to say that that POTS is "merely a sign of [it]". I'm aware of the possibility that in some cases, POTS stems from mast cell diseases.

I've been on adrenal support (many adaptogenic herbs) for a period of several years and I'm not any better off. Which adaptogens have worked for you?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I don't doubt that adrenal maladaptation is a contributor, but I don't think it's accurate to say that that POTS is "merely a sign of [it]". I'm aware of the possibility that in some cases, POTS stems from mast cell diseases.
I was the patient of an autonomic specialist for years and he felt (an published literature supports) that there are many causes for POTS. If you go through the many threads in the POTS section you will find a number of interesting studies. Good luck with the TTT. I found it important to have with me "recovery" food, drink and supplements as it can be a difficult test.
 
Messages
56
Thanks @Sushi. I'm definitely going to bring a water bottle with electrolyte tablets, and protein bars. I don't do well without regular fluids. I've read from different sources to stop eating and drinking 4 hours before the test, but mine is a couple hours - does it make a difference? I don't want to go without fluids for longer than necessary, but I wonder if it would affect the accuracy of the test? I also have to walk a considerable distance to get to the doctor's office. I wonder if that will be OK.
 

LINE

Senior Member
Messages
841
Location
USA
@datura - Understood, perhaps a better version would say that POTS could be a sign of adrenal stress . My references go back to Dr. Hans Selye who was the grandather of adrenal stress and many other articles that I have read. I can dig those up and send them to you if you like. Selye formulated the three stages of stress, alarm, resistance and exhaustion and noted the effects on the adrenal glands during these stages.

From my experience and research, Adaptogens "shave" the stress, meaning they can reduce stress but does not work on the adrenals. I used doses of pantothenic acid, B2, B6, Vitamin C, electrolytes such as magnesium etc. to bring some repair.

In retrospect, I should have exercised more caution before making my original post, mea culpa.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I've read from different sources to stop eating and drinking 4 hours before the test, but mine is a couple hours - does it make a difference? I don't want to go without fluids for longer than necessary, but I wonder if it would affect the accuracy of the test?
The reason they don't want you to eat and drink before a TTT is so that you won't vomit! :vomit:They are concerned about aspiration.