Aa
Any advice appreciated
I am a 30 year old woman from the UK. I've just been discharged from hospital after 7 weeks and am no better and totally confused!! I'm wondering if anyone can give me any advice or their opinion. I am best starting from the begining. Heregoes......14 months ago I was pregnant with my third child, middle and last trimesters I felt generally unwell, inappropriate sweating of hands and above the mouth, this all came in episodes. My midwife done routine bloods but all levels were normal. These episodes would come and go and I was told it was probably due to my pregnancy. I delivered my daughter by c-section and 2 days later I took only what I can describe as a 'funny turn' and the above symptoms came back again. I was told this was probably hormonal, (now I think this was a hypoglycemic episode) . Most symptoms cleared but I generally felt tired and groggy, and put this down to having 3 young children. These episodes came and went over the next few months until I experienced another 'funny turn'accompanied by dizziness and chest pain. An ambulance came who said I was tachycardic but my ecg was fine maybe i'd had a panic attack but took me to hospital anyway. I was investigated by a cardiologist who said my heart was fine and sent me home. I nearly collapsed twice walking out from the hospital!! That was 8 months ago and since I have never felt properly well or energetic but accepted this...my Dr could also find no reason my thyroid and other tests were fine. then she said I was folic acid and B12 deficient and had low iron stores. I began taking supplements but with no effect. A couple of weeks before i became really really unwell this time I began experiencing strange feelings of something over my body, this is hard to describe the only way I know how to is to compare it to a massive surge of adrenaline but released with no context. I then suffered on a few occasions severe palpatations with near faint. I was taken again into hospital as I nearly collapsed and had a heartrate of 135+. From this moment I became really unwell. I suffered hypogylcemic attacks, rapid heartbeat, severe nausea, dizziness, Cardiac T wave inversion, increased bp on standing, diarrrhea, funny turns, sweating of the hands, face and feet. chest pain, headaches, eyesight doesn't feel right, weakness, I have lost 2 stone. They carried out many blood tests - saying possible, diabetes, addisons, glandular, lymphnodes and many other reasons. I was diagnosed with coeliac disease at this time to - at one point all my symptoms were blamed on this!!! I had a treadmill test and there were no exaggerated heart rate increases, just the steady rise due to exercise. All tests came back normal - bloods, 24h urine x 5. I then had an MRI scan which found a 1cm growth on my adrenal gland. They thought they had found it.....but urine hormone tests said otherwise, they were normal range levels. The only other condition they now feel I may have is Postural Orthostatic Tachycardia Syndrome..which they first said I could not possibly have because my symptoms are present whilst laying flat to!!! They said it was definately not POTS. My BP never drops, although I have seconds were I feel I am going to pass out. On my tilt test my heart rate went from 90 - 140. I did 40 minutes. My BP never dropped it rose but i still felt a bit light headed. I was really unwell on the day of my test-so unwell and weak I just needed to rest so I am unsure whether this would have effected the results or not. I was started on Fludrocortisone 100mcg twice a day, and feel 70% better, still having palpatations that can wake me from my sleep and these 'rush' feelings that leave me unwell and shaky for a day or so, no tachycardia, nausea, no severe weakness or symptoms on standing and no orthostatic intolerence. I have now came home and will be followed up. I do not know what to think or believe, and am devestated as I have a young family to support(3 girls age 1,2 and 7 - all with Hypermobile joints).
My doctors have said they are at the end of the road!!! Ive asked for autonomic testing...they said it's not worth it, Ive asked for pheochromocytoma testing (due to the finding of this tumour)...they said maybe and ive asked for a ACTH stimulation test for Addisons(which is what they primarily suspected). I hope I get answers. I do feel a lot better but have several hours of the day, usually around mid day were I feel really ill again. I am on my feet from 6am till early evening and show no symptoms of orthostatic intolerence even when i'm feeling awful, this is why I to am unsure of the suspicion of POTS, and then I think of the tumour (which also could cause all the symptoms I have) and am puzzled as the doctor says urine tests are negative for this!!! I do not know what to think. I also seen in my medical notes elevated creatinine levels (twice the normal limit) when I asked the dr he said it was now back to normal and that he wasn't looking for this. Surely something would cause this effect on my kidneys?
I'm sorry for the length of this but I really need some advice from people with experience of POTS.
My doctors have said they are at the end of the road!!! Ive asked for autonomic testing...they said it's not worth it, Ive asked for pheochromocytoma testing (due to the finding of this tumour)...they said maybe and ive asked for a ACTH stimulation test for Addisons(which is what they primarily suspected). I hope I get answers. I do feel a lot better but have several hours of the day, usually around mid day were I feel really ill again. I am on my feet from 6am till early evening and show no symptoms of orthostatic intolerence even when i'm feeling awful, this is why I to am unsure of the suspicion of POTS, and then I think of the tumour (which also could cause all the symptoms I have) and am puzzled as the doctor says urine tests are negative for this!!! I do not know what to think. I also seen in my medical notes elevated creatinine levels (twice the normal limit) when I asked the dr he said it was now back to normal and that he wasn't looking for this. Surely something would cause this effect on my kidneys?
I'm sorry for the length of this but I really need some advice from people with experience of POTS.
Many thanks for the breakdown it is really informative for me. I appreciate the time you have all taken on this post.
I think halbashes summarized the answers to your questions perfectly. I don't know that I can give you much in the way of concrete answers, unfortunately:
>If I do have POTS could Fludrocortisone take me from being seriously unwell to my present status in a matter of weeks?
I think there are two parts to this question. Yes, I think fludrocortisone could bring considerable symptom amelioration to person with a hypovolemia-based orthostatic intolerance in that time frame. No, I don't know what bearing this has on a diagnosis of POTS. (Which is to say, this could occur under a different diagnosis.)
>Does it come in episodes?
On a small scale, day-to-day, POTS patients tend to report acute episodes such as presyncope or syncope which punctuate the chronic symptoms of the illness. On a larger scale, some POTS patients report going through months (or even years) of remission from the illness, only to have it return--often after a trigger such as a virus, pregnancy, or surgery--which I guess you could also call "episodes."
>and does it get worse every episode?
Some patients see a progressive course to their illness, but generally upon reflecting over long periods of time (years), not from one acute episode to the next. Published research seems to indicate that POTS tends to follow the opposite trajectory for many patients and lessen over time.
>Does it ever go or do you have it for life? (I have read conflicting theories on this)
Some patients experience a "recovery" within 2-5 years; recovery as defined by the researchers who originated that statement is not always what is interpreted by those who perpetuate it or what patients would like it to mean. A recovered patient is able to engage fully in work/school/home life with reasonable lifestyle accommodations. As I interpret that, this is not a *total* recovery/cure, but the illness is reduced to merely a minor nuisance by this point.
>If one does have POTS and are not experiencing significant symptoms is tachycardia on standing still there?
A POTS patient who is being successfully medicated may not meet the "30 bpm" standard for a POTS diagnosis while taking their medication. This is obviously one of the goals of treatment. Some patients are disappointed to find out that even after their tachycardia is reduced, their symptoms remain; this may be indicative of the fact that their tachycardia and their symptoms were both caused by some other underlying pathology and thus fixing the former did not relieve the latter. Whereas if the tachycardia itself is causing the symptoms, alleviating it can alleviate the symptoms.
So again, in summary, because the mechanisms behind the symptoms vary, what holds true for one POTS patient does not hold true, per se, for the next.
As for ideas for tests to request, in addition to getting your plasma norepinephrine testing both resting and standing, you may want to look over the types of tests other autonomic clinics perform to get ideas:
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Cleveland-Clinic-Syncope-and-Autonomic-Disorders-Clinic/show/1004815
http://my.clevelandclinic.org/services/quantitative_sudomotor_axon_reflex_test/ns_overview.aspx
http://my.clevelandclinic.org/heart/disorders/electric/syncope.aspx
(I use CCF as an illustrative example because I can't find similar educational materials on Vandy or Mayo's websites. If someone else knows where to find them, by all means let me know as I don't intend to always be biased toward Cleveland.)
>If I do have POTS could Fludrocortisone take me from being seriously unwell to my present status in a matter of weeks?
I think there are two parts to this question. Yes, I think fludrocortisone could bring considerable symptom amelioration to person with a hypovolemia-based orthostatic intolerance in that time frame. No, I don't know what bearing this has on a diagnosis of POTS. (Which is to say, this could occur under a different diagnosis.)
>Does it come in episodes?
On a small scale, day-to-day, POTS patients tend to report acute episodes such as presyncope or syncope which punctuate the chronic symptoms of the illness. On a larger scale, some POTS patients report going through months (or even years) of remission from the illness, only to have it return--often after a trigger such as a virus, pregnancy, or surgery--which I guess you could also call "episodes."
>and does it get worse every episode?
Some patients see a progressive course to their illness, but generally upon reflecting over long periods of time (years), not from one acute episode to the next. Published research seems to indicate that POTS tends to follow the opposite trajectory for many patients and lessen over time.
>Does it ever go or do you have it for life? (I have read conflicting theories on this)
Some patients experience a "recovery" within 2-5 years; recovery as defined by the researchers who originated that statement is not always what is interpreted by those who perpetuate it or what patients would like it to mean. A recovered patient is able to engage fully in work/school/home life with reasonable lifestyle accommodations. As I interpret that, this is not a *total* recovery/cure, but the illness is reduced to merely a minor nuisance by this point.
>If one does have POTS and are not experiencing significant symptoms is tachycardia on standing still there?
A POTS patient who is being successfully medicated may not meet the "30 bpm" standard for a POTS diagnosis while taking their medication. This is obviously one of the goals of treatment. Some patients are disappointed to find out that even after their tachycardia is reduced, their symptoms remain; this may be indicative of the fact that their tachycardia and their symptoms were both caused by some other underlying pathology and thus fixing the former did not relieve the latter. Whereas if the tachycardia itself is causing the symptoms, alleviating it can alleviate the symptoms.
So again, in summary, because the mechanisms behind the symptoms vary, what holds true for one POTS patient does not hold true, per se, for the next.
As for ideas for tests to request, in addition to getting your plasma norepinephrine testing both resting and standing, you may want to look over the types of tests other autonomic clinics perform to get ideas:
http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/Cleveland-Clinic-Syncope-and-Autonomic-Disorders-Clinic/show/1004815
http://my.clevelandclinic.org/services/quantitative_sudomotor_axon_reflex_test/ns_overview.aspx
http://my.clevelandclinic.org/heart/disorders/electric/syncope.aspx
(I use CCF as an illustrative example because I can't find similar educational materials on Vandy or Mayo's websites. If someone else knows where to find them, by all means let me know as I don't intend to always be biased toward Cleveland.)
Every patient with Dysautonomia differs in terms of their symptoms. Some patients will have very few symptoms, and respond well to minimal treatment. These patients may be able to have a normal, active lifestyle with very few challenges.
Other patients require multiple medications, and still suffer constant daily symptoms. These patients may have varying good days, and bad days. (As well as good moments, and bad moments.) Some might feel predominantly well, with few occasional symptoms. While others might feel predominantly ill, with few occasional good days.
Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Other patients require multiple medications, and still suffer constant daily symptoms. These patients may have varying good days, and bad days. (As well as good moments, and bad moments.) Some might feel predominantly well, with few occasional symptoms. While others might feel predominantly ill, with few occasional good days.
Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
That is how I feel at the moment, i'm not sure if I fit. Most times on standing my heart rate doesn't even increase by 10 bpm, sometimes it does up to 20!! It did jump on the TTT by 50+ and my BP went up a lot too. On the day I was very unwell, I was so weak and I was anxious about this test because of how I already felt (and I think i'm developing a bit of a fear of passing out - even though I haven't actually fainted up to now). Would this effect my heart rate to that extent? When I was in the first couple of weeks of beeing unwell any movement would elevate my heart rate, it would jump everywhere!!
I do have this endo app on friday and I have also recieved an app for a neurologist for the middle of Aug. I am going to insist that further testing is done (autonomic) to get a better idea of what is going on. If you think there is any tests I should request could you please post them.
If I do have POTS could Fludrocortisone take me from being seriously unwell to my present status in a matter of weeks? Does it come in episodes? and does it get worse every episode? Does it ever go or do you have it for life? (I have read conflicting theories on this) If one does have POTS and are not experiencing significant symptoms is tachycardia on standing still there? (sorry again for the questions.....I have soooooo many!!! x )
I think it is wonderful that yourself and others on this board take time to advise and help people like me. It is a massive support. From my medical team I have not had one peice of advice on how to cope or manage my symptoms, they have not talked to me about these conditions they say I may have. Not as much as how to manage my symptoms, yet I have sat in the hospital for weeks watching person after person being talked to regarding their illness., every question I asked I was told they were unsure or did not know... I understand not much is known but I have found lots of information here and on other sites - surely they could do the same and pass it on. My faith in them has dwindled. I asked about a POTS specialist in the UK or at least someone with experience of it and was told there is no-one here - whether this is correct I do not know, but if I do get a firm diagnosis I will do my best to find one.
After finding this site I have joined other discussions here to see if I can share my experiences of other conditions to help others who are searching for answers.
I do have this endo app on friday and I have also recieved an app for a neurologist for the middle of Aug. I am going to insist that further testing is done (autonomic) to get a better idea of what is going on. If you think there is any tests I should request could you please post them.
If I do have POTS could Fludrocortisone take me from being seriously unwell to my present status in a matter of weeks? Does it come in episodes? and does it get worse every episode? Does it ever go or do you have it for life? (I have read conflicting theories on this) If one does have POTS and are not experiencing significant symptoms is tachycardia on standing still there? (sorry again for the questions.....I have soooooo many!!! x )
I think it is wonderful that yourself and others on this board take time to advise and help people like me. It is a massive support. From my medical team I have not had one peice of advice on how to cope or manage my symptoms, they have not talked to me about these conditions they say I may have. Not as much as how to manage my symptoms, yet I have sat in the hospital for weeks watching person after person being talked to regarding their illness., every question I asked I was told they were unsure or did not know... I understand not much is known but I have found lots of information here and on other sites - surely they could do the same and pass it on. My faith in them has dwindled. I asked about a POTS specialist in the UK or at least someone with experience of it and was told there is no-one here - whether this is correct I do not know, but if I do get a firm diagnosis I will do my best to find one.
After finding this site I have joined other discussions here to see if I can share my experiences of other conditions to help others who are searching for answers.
I didn't even know they had three categories of low flow, normal flow and high flow. I hadn't seen those articles. They look pretty complicated when my brain doesn't want to concentrate too much, but has this study progressed to the point where they know different treatments for each? I've been seriously thinking about going back on verapamil for the tachycardia, since I think the variants between sitting and standing may not have been as wide when I was on that drug before.
Eve,
Considering what you said about your heart rate going up about 20 bpm rather than 30, I can see why you are questioning things. It seems as though POTS is an *almost* fit for a diagnosis. Your tilt table test was positive, but it doesn't seem as though that's representative of what you've been experiencing overall. Your symptoms do seem autonomic in nature, but it's so hard to say for sure considering they're refusing you further autonomic testing. I really feel for you that this is a difficult situation.
I hope that you get somewhere with the endocrinologist. Overall, I hope you get some answers soon.
I think many, if not most, of us here went through a period of time where we floundered as the doctors struggled to figure out what our diagnosis was, so we can relate to what you're going through right now. I wish we had more answers for you.
Considering what you said about your heart rate going up about 20 bpm rather than 30, I can see why you are questioning things. It seems as though POTS is an *almost* fit for a diagnosis. Your tilt table test was positive, but it doesn't seem as though that's representative of what you've been experiencing overall. Your symptoms do seem autonomic in nature, but it's so hard to say for sure considering they're refusing you further autonomic testing. I really feel for you that this is a difficult situation.
I hope that you get somewhere with the endocrinologist. Overall, I hope you get some answers soon.
I think many, if not most, of us here went through a period of time where we floundered as the doctors struggled to figure out what our diagnosis was, so we can relate to what you're going through right now. I wish we had more answers for you.
SurgiMenopause,
Have you read the articles on "low flow," "normal flow," and "high flow" POTS? It's a different method of classifying than PD vs. hyperadrenergic; it would offer a possible explanation as to localized patterns of vasoconstriction noted at the skin level, even despite blood pooling elsewhere if you experience that symptom. This research is coming from Dr. Julian Stewart in NY.
http://ajpheart.physiology.org/cgi/content/full/287/3/H1319
http://www.nymc.edu/fhp/centers/syncope/circulatory_findings_in_pots_and_CFS.htm
I don't know about the interpretation of the 24 hour urine sodium test, or about its relation to plasma volume or total blood volume, sorry. I've been tested for diabetes insipidus and those type of imbalances myself due to bouts of extreme thirst and excessive drinking, but the tests came back negative and we haven't explored it further. There are journal articles regarding abnormalities in the renin-angiotensin-aldosterone hormone system in POTS patients, which has to do with control of fluid retention/elimination so perhaps dilute urine, excessive thirst, excessive urination could all just be the other side of the coin of the hypovolemia?
Have you read the articles on "low flow," "normal flow," and "high flow" POTS? It's a different method of classifying than PD vs. hyperadrenergic; it would offer a possible explanation as to localized patterns of vasoconstriction noted at the skin level, even despite blood pooling elsewhere if you experience that symptom. This research is coming from Dr. Julian Stewart in NY.
http://ajpheart.physiology.org/cgi/content/full/287/3/H1319
http://www.nymc.edu/fhp/centers/syncope/circulatory_findings_in_pots_and_CFS.htm
I don't know about the interpretation of the 24 hour urine sodium test, or about its relation to plasma volume or total blood volume, sorry. I've been tested for diabetes insipidus and those type of imbalances myself due to bouts of extreme thirst and excessive drinking, but the tests came back negative and we haven't explored it further. There are journal articles regarding abnormalities in the renin-angiotensin-aldosterone hormone system in POTS patients, which has to do with control of fluid retention/elimination so perhaps dilute urine, excessive thirst, excessive urination could all just be the other side of the coin of the hypovolemia?
To comment on the last paragraph of your last post.
My urine to is so pale it looks like water!! and my veins also look smaller.....I have veins inside my wrist that have always been quite prominant and now they vary on a daily basis, sometimes very thin and deep set and other days thick and quite pronounced. I am a phlebotomist so I am used to working with veins :) and I tell my patients that they should drink plenty of water before having their blood taken as when they are dehydrated their veins are likely to collapse. The thing is I drink lots of water so why mine are shrinking baffles me!!!
My urine to is so pale it looks like water!! and my veins also look smaller.....I have veins inside my wrist that have always been quite prominant and now they vary on a daily basis, sometimes very thin and deep set and other days thick and quite pronounced. I am a phlebotomist so I am used to working with veins :) and I tell my patients that they should drink plenty of water before having their blood taken as when they are dehydrated their veins are likely to collapse. The thing is I drink lots of water so why mine are shrinking baffles me!!!
Heiferly,
Many thanks for your post. I understand that POTS is a collection of symptoms, patients each having their own, but i'm trying to figure out do my symptoms fit in or are they indicating something else...I am so confused at the moment. I do not pass out just sometimes feel like I need to and this is not caused by low bp or standing it just occurs on me, each time this happened during my 7 week stay in hospital my sats were fine, sometimes my heartrate was increased to approx 100-110 but everything else was fine.
I did have episodes of sweating but this was limited to hands, feet and around my mouth - i also have blue tinged finger and toe nails at these times and I have since been told this may be my circulation - whether this is related I don't know.
My daughters are in the process of being assessed for EDS as they have blue sclera along with their hypermobile joints. One also has a tethered spinal cord which sometimes relates to eds and the other is under assessment as she has no ankle reflexes. I hope to god I do not have a condition that I may have passed to them, that I don't think I could cope with.
I am going to ask my consultant if they have looked into MCAD and if not I will request they do many thanks for the info.
I have had a holter monitor on and have also done my own monitoring and the most my hr has increased is by 20 bpm. The highest it got to was a 100. Whether this is as I am feeling stronger at the moment I am unsure, and whether this is due to the Fludrocortisone I am also unsure.
Halbashes,
Thanks for your post. I am currently taking 100mcg of Fludrocortisone twice a day. I was also on bisoprolol for a couple of weeks but they made me feel worse and gave me more chest pain. I have not been advised to up my fluid or salt intake. But I drink a large amount daily anyway as I am always thirsty!!
My bp has not been low it increases on standing, would fludrocortisone still be used?
Could a low volume alone cause POTS?
One occasion whilst I was sitting waiting for my endoscopy I felt like I needed to collapse and I felt weaker and all 'funny'. My sats were fine (bp,hr,O2) but I was having a hypoglycemic attack so I was given a glucose solution by IV (as I was nil by mouth) and after this felt great!!!
During one episode of near faint my T-waves (on ecg) dropped and have now become inverted. Has anyone else experienced this? My dr cannot tell me why this happened.
I go and see my endocrinologist on friday and am looking forward to this. He will give me his insight on the tumour I have and will hopefully give me a plan of action regarding investigation. Maybe then I can get a definate diagnosis one way or another.
I appreciate all your input it is comforting and supportive to know I am not alone and that people do understand (I now look well again - even though I don't feel so gd - and people think I should now be back to normal - I hope one day I am)
Eve xx
Many thanks for your post. I understand that POTS is a collection of symptoms, patients each having their own, but i'm trying to figure out do my symptoms fit in or are they indicating something else...I am so confused at the moment. I do not pass out just sometimes feel like I need to and this is not caused by low bp or standing it just occurs on me, each time this happened during my 7 week stay in hospital my sats were fine, sometimes my heartrate was increased to approx 100-110 but everything else was fine.
I did have episodes of sweating but this was limited to hands, feet and around my mouth - i also have blue tinged finger and toe nails at these times and I have since been told this may be my circulation - whether this is related I don't know.
My daughters are in the process of being assessed for EDS as they have blue sclera along with their hypermobile joints. One also has a tethered spinal cord which sometimes relates to eds and the other is under assessment as she has no ankle reflexes. I hope to god I do not have a condition that I may have passed to them, that I don't think I could cope with.
I am going to ask my consultant if they have looked into MCAD and if not I will request they do many thanks for the info.
I have had a holter monitor on and have also done my own monitoring and the most my hr has increased is by 20 bpm. The highest it got to was a 100. Whether this is as I am feeling stronger at the moment I am unsure, and whether this is due to the Fludrocortisone I am also unsure.
Halbashes,
Thanks for your post. I am currently taking 100mcg of Fludrocortisone twice a day. I was also on bisoprolol for a couple of weeks but they made me feel worse and gave me more chest pain. I have not been advised to up my fluid or salt intake. But I drink a large amount daily anyway as I am always thirsty!!
My bp has not been low it increases on standing, would fludrocortisone still be used?
Could a low volume alone cause POTS?
One occasion whilst I was sitting waiting for my endoscopy I felt like I needed to collapse and I felt weaker and all 'funny'. My sats were fine (bp,hr,O2) but I was having a hypoglycemic attack so I was given a glucose solution by IV (as I was nil by mouth) and after this felt great!!!
During one episode of near faint my T-waves (on ecg) dropped and have now become inverted. Has anyone else experienced this? My dr cannot tell me why this happened.
I go and see my endocrinologist on friday and am looking forward to this. He will give me his insight on the tumour I have and will hopefully give me a plan of action regarding investigation. Maybe then I can get a definate diagnosis one way or another.
I appreciate all your input it is comforting and supportive to know I am not alone and that people do understand (I now look well again - even though I don't feel so gd - and people think I should now be back to normal - I hope one day I am)
Eve xx
It was a cardiologist in CA that told me fludrocortisone and midodrine (the two he tried me on) only had (if I remember correctly) something like a 60 percent success rate in people with POTS. I don't know where he got his data from. I wonder if it has something to do with the variety of kinds of POTS there are?
I think I may also have low volume as well hyperadrenergic involved in my POTS. In fact, I had an angiogram where I heard somebody call out "low volume" for some reason during the test. Afterward, the doctor advised me to drink alot. I had been told not to drink so many hours prior to the test. But just the day before, a medical staff person wonder if the urine in my bedside commode was urine or water.
I some years later also asked a PCP to do a 24 hour urine to check sodium levels to test my theory. Although within the reference range at 81 (ref. 40-220), info I had printed from Mayo Clinic said that this sodium was measured in a study as a surrogate index of plasma volume. 28.9% excreted less than 100 mEq and 66.4% less than 150 mEq in 24 hours. Can I have your thoughts on what low volume means for a person, aside from my trouble with lightheaded and graying/whiting out vision symptoms? I am concerned about them taking blood at the lab because of this and my veins seem like they've gotten smaller than they used to be.
I think I may also have low volume as well hyperadrenergic involved in my POTS. In fact, I had an angiogram where I heard somebody call out "low volume" for some reason during the test. Afterward, the doctor advised me to drink alot. I had been told not to drink so many hours prior to the test. But just the day before, a medical staff person wonder if the urine in my bedside commode was urine or water.
I some years later also asked a PCP to do a 24 hour urine to check sodium levels to test my theory. Although within the reference range at 81 (ref. 40-220), info I had printed from Mayo Clinic said that this sodium was measured in a study as a surrogate index of plasma volume. 28.9% excreted less than 100 mEq and 66.4% less than 150 mEq in 24 hours. Can I have your thoughts on what low volume means for a person, aside from my trouble with lightheaded and graying/whiting out vision symptoms? I am concerned about them taking blood at the lab because of this and my veins seem like they've gotten smaller than they used to be.
I think you've already been given a lot of great information, but I too wanted to post a comment. Fludrocortisone/Florinef is actually one of the preferred treatment options for the orthostatic intolerance associated with the various forms of Dysautonomia. When tolerated, and used in combination with increased fluids/salt, it can even eliminate most symptoms in some patients.
Of course, there are many patients that require much more than that. Unfortunately, treatment in Dysautonomia is basically symptom-based with a lot of trial and error. Which symptoms are most bothersome to you now? I think you mentioned a beta blocker in one of your previous posts, have you started one yet? Are you taking any other medication?
Autonomic Dysfunction & Dysautonomia Index:
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196
Of course, there are many patients that require much more than that. Unfortunately, treatment in Dysautonomia is basically symptom-based with a lot of trial and error. Which symptoms are most bothersome to you now? I think you mentioned a beta blocker in one of your previous posts, have you started one yet? Are you taking any other medication?
Autonomic Dysfunction & Dysautonomia Index:
http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction--Dysautonomia-Index-Page/show/857?cid=196
One misconception I want to clear up for you is that POTS is one unified condition. It is better to think of the diagnosis of POTS as descriptive of a specific set of symptoms and a manner of bodily dysfunction in response to certain stimuli, but researchers are finding many different processes by which this occurs, so POTS means something different from one patient to another. Which is to say, the actual root problem can be completely different for two different POTS patients, despite the end result being a very similar constellation of signs and symptoms. Much of this research is still relatively in its infancy and diagnostic categories such as "hyperadrenergic POTS" vs. "PD POTS" or "low flow POTS" vs. "high flow POTS" vs. "normal flow POTS" have not yet been widely accepted across the entire community of dysautonomia experts.
Regarding fludrocortisone, I'm surprised to hear a cardiologist say it has a low success rate with POTS patients. It is effective (when properly combined with salt and fluids) at boosting fluid retention and thus supporting blood volume. While no drug is right for every patient, there are substantial numbers of dysautonomia patients on fludrocortisone; indeed, it is one of the most common drugs used to treat POTS.
Increased or decreased sweating could possibly be an indication of autonomic neuropathy. You mentioned that your doctors were unwilling to do additional autonomic testing; unfortunately, testing for autonomic neuropathy would be part of that.
If joint hypermobility runs in your family, have you been evaluated for joint hypermobility/EDS? It's fairly common in conjunction with POTS.
The other thing that crossed my mind in reading about your symptoms was mastocytosis/MCAD, which can be associated with some cases of POTS. Being properly evaluated for these, particularly MCAD, can be tricky unless you get to a masto specialist but it may be worth looking into as it is treatable.
http://hyper.ahajournals.org/cgi/content/abstract/45/3/385
http://www.tmsforacure.org/mastocytosis.shtml
You say you have no tachycardia now. Are you monitoring with a home blood pressure cuff, or how do you know? Is it possible that you're still having postural tachycardia and just aren't aware of it or catching it at the right time with your blood pressure cuff? There are wrist watch/chest strap sets available that will give a continuous heart rate readout so you can see how it changes throughout the day; they're designed for athletes and sold in sports stores. I would say if you're doubting your diagnosis, collecting as much information as possible could be key. If you're not having tachycardia, bringing this information to your docs might help convince them to do more testing.
As for whether people with POTS feel unwell all the time or only when standing, I think it varies considerably from person to person. Some people with POTS are mildly affected and generally only experience symptoms under a certain degree of orthostatic stress. Others have their worst symptoms under orthostatic stress (while standing), if they can tolerate standing for any appreciable amount of time at all, but experience dysautonomia symptoms at any time regardless of position. Quality of life may be comparable to someone with congestive heart failure, according to a statement by POTS expert Blair Grubb.
I hope you get more answers soon.
Regarding fludrocortisone, I'm surprised to hear a cardiologist say it has a low success rate with POTS patients. It is effective (when properly combined with salt and fluids) at boosting fluid retention and thus supporting blood volume. While no drug is right for every patient, there are substantial numbers of dysautonomia patients on fludrocortisone; indeed, it is one of the most common drugs used to treat POTS.
Increased or decreased sweating could possibly be an indication of autonomic neuropathy. You mentioned that your doctors were unwilling to do additional autonomic testing; unfortunately, testing for autonomic neuropathy would be part of that.
If joint hypermobility runs in your family, have you been evaluated for joint hypermobility/EDS? It's fairly common in conjunction with POTS.
The other thing that crossed my mind in reading about your symptoms was mastocytosis/MCAD, which can be associated with some cases of POTS. Being properly evaluated for these, particularly MCAD, can be tricky unless you get to a masto specialist but it may be worth looking into as it is treatable.
http://hyper.ahajournals.org/cgi/content/abstract/45/3/385
http://www.tmsforacure.org/mastocytosis.shtml
You say you have no tachycardia now. Are you monitoring with a home blood pressure cuff, or how do you know? Is it possible that you're still having postural tachycardia and just aren't aware of it or catching it at the right time with your blood pressure cuff? There are wrist watch/chest strap sets available that will give a continuous heart rate readout so you can see how it changes throughout the day; they're designed for athletes and sold in sports stores. I would say if you're doubting your diagnosis, collecting as much information as possible could be key. If you're not having tachycardia, bringing this information to your docs might help convince them to do more testing.
As for whether people with POTS feel unwell all the time or only when standing, I think it varies considerably from person to person. Some people with POTS are mildly affected and generally only experience symptoms under a certain degree of orthostatic stress. Others have their worst symptoms under orthostatic stress (while standing), if they can tolerate standing for any appreciable amount of time at all, but experience dysautonomia symptoms at any time regardless of position. Quality of life may be comparable to someone with congestive heart failure, according to a statement by POTS expert Blair Grubb.
I hope you get more answers soon.
I'm happy to be of help! Doctors consider me complex too. It's not easy, and you do have to do your own research sometimes and bring it to the attention of your doctor if they are willing to listen.
Many thanks for your reply, I know i asked a lot of questions but my medical team cannot answer any, I am that complex to them.
Hopefully the next few weeks will bring a dx for me one way or the other and then I at least know what i am fighting with. I have no tachycardia, orthostatic intolerance or near faint at the moment. I just feel unwell in episodes and have palpatations. But I do feel different week by week!!!
Once again thank you for taking the time to respond to me, forums like these are so valuable.
Hopefully the next few weeks will bring a dx for me one way or the other and then I at least know what i am fighting with. I have no tachycardia, orthostatic intolerance or near faint at the moment. I just feel unwell in episodes and have palpatations. But I do feel different week by week!!!
Once again thank you for taking the time to respond to me, forums like these are so valuable.
Is Norepinephrine detected via a blood or urine test?
Blood is where they measure norepinephrine. Normetanephrines can be detected in urine with a 24 hour test. One website, they seemed to think the 24 hour metanephrines urine test was the best lab test for pheo, but you probably could find a number of sites where they have jumped on the researched band wagon of plasma free metanephrines as the way to go.
could I still possibly have the hyperadrenergic form of POTS? or would this rule out a POTS diagnosis?
There are different forms of POTS. Hyperadrenergic is just one of them. If they didn't measure your norepinephrine while you were standing up, I don't think you can eliminate the hyperadrenergic form.
Do people who have POTS pass out because their bp drops or are there other reasons to?
Actually, not everyone passes out who has POTS, though some do. The only time I've passed out was on the tilt table after they gave me nitroglycerine. There is another dysautonomic condition I believe called neurocardiogenic syncope or NCS which involves fainting. You can look about it on ndrf website (an org called national dysautonomia research foundation). You might also want to look at pots place, a com website. It was explained to me that in POTS, your heart races to maintain your blood pressure to prevent you from passing out.
Is the sweating experienced caused by being upright, or can it happen anytime? also is it limited to an area or experienced all over? (mine is just hands and feet and around the mouth)
I've broken a sweat on my forehead from tachycardia while standing. But I've been having body sweats while sleeping since at least kindergarten (which I don't think is related) as well.
Do people with POTS feel really unwell all the time or only upon standing?
People with IST or inappropriate sinus tachycardia can have tachycardia while resting or standing. But with POTS, the tachycardia is supposed to come with standing. I actually have been diagnosed with both of these conditions. The pulse goes up significantly at times for me with standing. Other times, it can be practically the same. A recent 48 hour holter monitor showed a lot more tachycardia episodes than I though I had. The light headedness come when standing, especially after sleeping or awhile after a large meal, or after a hot shower, or raising arms above one's head. Vision can start going gray or white. I believe people with POTS typically will feel better lying down or sitting with feet up.
Is dizziness experienced only upon standing? Recently, occasionally I'm having dizziness with head movement while sitting, but I believe this is unrelated to POTS. Typically, POTS produce lightheadedness with standing or raising arms while in the shower, that type of thing. A shower chair is important equipment.
Is POTS a constant illness or can it come and go?
I've heard a person can have a remission from POTS. I believe there can be exacerbations where it comes back too. Probably for some, it's always there, but some days are worse than others.
On the Wikipedia website under there 'diagnosis' explanation they have coeliac disease (along with several other conditions such as pheo, addisons, lyme) as a condition to rule out before a POTS diagnosis can be made. Have you heard this before and can coeliac give these symptoms? I have not heard that before and it was not done with me prior to an electrophysiologist giving me the diagnosis from my tilt table test. I think you are speaking of celiac sprue- I don't know much about it, but I know that can have nausea attached. It has to do with a wheat intolerance. Lyme is acquired from a tick. Do you have ticks in your area? If they are checking for Addison's and a blood level come out abnormal, I suggest you ask them (if they don't think of it) to do an MRI of your pituitary with and without contrast to check for an adenoma.
Can fludrocortisone eliminate tachycardia, sickness, weakness and shakiness related to this?
I took this medicine for a very short time. I think it gave me a headache. It is supposed to raise blood pressure. But the percent of people with POTS it actually helps is not extremely great, according to a cardiologist I saw. I tried midodrine too, and it gave me more chest pain. The cardiologist wound up recommending I eat a lot of salt and possibly wear compression stockings. The compression stockings I did crummy in after paying an awful lot for a pair. It took a great deal of work to get in and then one of the feet twisted and the seam dug into me. And eating too much salty food one day gave me a migraine, but the doctors haven't told me how much to eat.
Blood is where they measure norepinephrine. Normetanephrines can be detected in urine with a 24 hour test. One website, they seemed to think the 24 hour metanephrines urine test was the best lab test for pheo, but you probably could find a number of sites where they have jumped on the researched band wagon of plasma free metanephrines as the way to go.
could I still possibly have the hyperadrenergic form of POTS? or would this rule out a POTS diagnosis?
There are different forms of POTS. Hyperadrenergic is just one of them. If they didn't measure your norepinephrine while you were standing up, I don't think you can eliminate the hyperadrenergic form.
Do people who have POTS pass out because their bp drops or are there other reasons to?
Actually, not everyone passes out who has POTS, though some do. The only time I've passed out was on the tilt table after they gave me nitroglycerine. There is another dysautonomic condition I believe called neurocardiogenic syncope or NCS which involves fainting. You can look about it on ndrf website (an org called national dysautonomia research foundation). You might also want to look at pots place, a com website. It was explained to me that in POTS, your heart races to maintain your blood pressure to prevent you from passing out.
Is the sweating experienced caused by being upright, or can it happen anytime? also is it limited to an area or experienced all over? (mine is just hands and feet and around the mouth)
I've broken a sweat on my forehead from tachycardia while standing. But I've been having body sweats while sleeping since at least kindergarten (which I don't think is related) as well.
Do people with POTS feel really unwell all the time or only upon standing?
People with IST or inappropriate sinus tachycardia can have tachycardia while resting or standing. But with POTS, the tachycardia is supposed to come with standing. I actually have been diagnosed with both of these conditions. The pulse goes up significantly at times for me with standing. Other times, it can be practically the same. A recent 48 hour holter monitor showed a lot more tachycardia episodes than I though I had. The light headedness come when standing, especially after sleeping or awhile after a large meal, or after a hot shower, or raising arms above one's head. Vision can start going gray or white. I believe people with POTS typically will feel better lying down or sitting with feet up.
Is dizziness experienced only upon standing? Recently, occasionally I'm having dizziness with head movement while sitting, but I believe this is unrelated to POTS. Typically, POTS produce lightheadedness with standing or raising arms while in the shower, that type of thing. A shower chair is important equipment.
Is POTS a constant illness or can it come and go?
I've heard a person can have a remission from POTS. I believe there can be exacerbations where it comes back too. Probably for some, it's always there, but some days are worse than others.
On the Wikipedia website under there 'diagnosis' explanation they have coeliac disease (along with several other conditions such as pheo, addisons, lyme) as a condition to rule out before a POTS diagnosis can be made. Have you heard this before and can coeliac give these symptoms? I have not heard that before and it was not done with me prior to an electrophysiologist giving me the diagnosis from my tilt table test. I think you are speaking of celiac sprue- I don't know much about it, but I know that can have nausea attached. It has to do with a wheat intolerance. Lyme is acquired from a tick. Do you have ticks in your area? If they are checking for Addison's and a blood level come out abnormal, I suggest you ask them (if they don't think of it) to do an MRI of your pituitary with and without contrast to check for an adenoma.
Can fludrocortisone eliminate tachycardia, sickness, weakness and shakiness related to this?
I took this medicine for a very short time. I think it gave me a headache. It is supposed to raise blood pressure. But the percent of people with POTS it actually helps is not extremely great, according to a cardiologist I saw. I tried midodrine too, and it gave me more chest pain. The cardiologist wound up recommending I eat a lot of salt and possibly wear compression stockings. The compression stockings I did crummy in after paying an awful lot for a pair. It took a great deal of work to get in and then one of the feet twisted and the seam dug into me. And eating too much salty food one day gave me a migraine, but the doctors haven't told me how much to eat.
Many thanks for the advice. I'm glad that I have found this website I think the people here know a whole lot more than most of the medical professionals dealing with us. I hope you have your POTS under control.
Is Norepinephrine detected via a blood or urine test? I have had many of both but was told these levels were ok, if they have tested me for this and it showed as normal could I still possibly have the hyperadrenergic form of POTS? or would this rule out a POTS diagnosis?
I see my endocrinologist next friday and am going to ask him for the tests you have mentioned. My cardiac dr said he has tested me for Metaphrines, but as I am a Phlebotomist I know a bit about blood tests, and they have not tested for the plasma free as I know this has to be kept on ice. So I will mention this also. I do have symptoms laying down, I have nearly passed out whilst laying flat, palpatations, sweating, nausea, dizziness along with all other symptoms all happen either laying or standing. The only orthostatic problems I had were of feeling weaker than I already was when on my feet or sitting up (then I felt I needed to lay before I passed out) and chest pain, that was not really relieved by laying but never got worse.
I have requested copies of all test results that were carried out on me and should be in reciept of these soon, when they arrive I will post them here. TSH, T3 and T4 along with many other hormones were tested for.
May i ask you a few questions about POTS?
Do people who have POTS pass out because their bp drops or are there other reasons to?
Is the sweating experienced caused by being upright, or can it happen anytime? also is it limited to an area or experienced all over? (mine is just hands and feet and around the mouth)
Do people with POTS feel really unwell all the time or only upon standing?
Is dizziness experienced only upon standing?
Is POTS a constant illness or can it come and go? I was serverly unwell for weeks with not much relief from symptoms.
On the Wikipedia website under there 'diagnosis' explanation they have coeliac disease (along with several other conditions such as pheo, addisons, lyme) as a condition to rule out before a POTS diagnosis can be made. Have you heard this before and can coeliac give these symptoms? I have just been diagnosed with this and it sounds like a long shot to me.
Can fludrocortisone eliminate tachycardia, sickness, weakness and shakiness related to this?
I am on Fludrocortisone at the moment, I did begin to feel better 2 days before I began them so I am unsure whether it is these that have helped or whether my body was helping itself. Several weeks into treatment and when these tablets are due I start to feel unwell - which I didn't untill the past few days!!
When I was told 'you have POTS' the dr said great I will put you on bisoprolol and you will be like a new woman tomorrow!!!! Nursing staff also said to me that as I can walk to and from the toilet okay I was fine to go and wait my turn for a scan!!! Whether I have POTS or not is still in debate but the ignorance and ill-education of this illness is awful. It may be rare but it does exist and health care professionals should be made aware of it.
I.m sorry for all the questions but all I got from the hospital staff is 'you know more than us!!' My confidence in them at this point totally disappeared.
Until this tumour is fully investigated I suppose I will not have a definate diagnosis, I deep down feel that this tumour is the cause of my problems, to me it seems a bit to coincidental but time will tell I suppose.
What is your experience with POTS. I am trying to learn as much as I can at the moment so I can be my own advocate..I suppose you have to with conditions as rare as POTS and Pheochromocytoma.
Is Norepinephrine detected via a blood or urine test? I have had many of both but was told these levels were ok, if they have tested me for this and it showed as normal could I still possibly have the hyperadrenergic form of POTS? or would this rule out a POTS diagnosis?
I see my endocrinologist next friday and am going to ask him for the tests you have mentioned. My cardiac dr said he has tested me for Metaphrines, but as I am a Phlebotomist I know a bit about blood tests, and they have not tested for the plasma free as I know this has to be kept on ice. So I will mention this also. I do have symptoms laying down, I have nearly passed out whilst laying flat, palpatations, sweating, nausea, dizziness along with all other symptoms all happen either laying or standing. The only orthostatic problems I had were of feeling weaker than I already was when on my feet or sitting up (then I felt I needed to lay before I passed out) and chest pain, that was not really relieved by laying but never got worse.
I have requested copies of all test results that were carried out on me and should be in reciept of these soon, when they arrive I will post them here. TSH, T3 and T4 along with many other hormones were tested for.
May i ask you a few questions about POTS?
Do people who have POTS pass out because their bp drops or are there other reasons to?
Is the sweating experienced caused by being upright, or can it happen anytime? also is it limited to an area or experienced all over? (mine is just hands and feet and around the mouth)
Do people with POTS feel really unwell all the time or only upon standing?
Is dizziness experienced only upon standing?
Is POTS a constant illness or can it come and go? I was serverly unwell for weeks with not much relief from symptoms.
On the Wikipedia website under there 'diagnosis' explanation they have coeliac disease (along with several other conditions such as pheo, addisons, lyme) as a condition to rule out before a POTS diagnosis can be made. Have you heard this before and can coeliac give these symptoms? I have just been diagnosed with this and it sounds like a long shot to me.
Can fludrocortisone eliminate tachycardia, sickness, weakness and shakiness related to this?
I am on Fludrocortisone at the moment, I did begin to feel better 2 days before I began them so I am unsure whether it is these that have helped or whether my body was helping itself. Several weeks into treatment and when these tablets are due I start to feel unwell - which I didn't untill the past few days!!
When I was told 'you have POTS' the dr said great I will put you on bisoprolol and you will be like a new woman tomorrow!!!! Nursing staff also said to me that as I can walk to and from the toilet okay I was fine to go and wait my turn for a scan!!! Whether I have POTS or not is still in debate but the ignorance and ill-education of this illness is awful. It may be rare but it does exist and health care professionals should be made aware of it.
I.m sorry for all the questions but all I got from the hospital staff is 'you know more than us!!' My confidence in them at this point totally disappeared.
Until this tumour is fully investigated I suppose I will not have a definate diagnosis, I deep down feel that this tumour is the cause of my problems, to me it seems a bit to coincidental but time will tell I suppose.
What is your experience with POTS. I am trying to learn as much as I can at the moment so I can be my own advocate..I suppose you have to with conditions as rare as POTS and Pheochromocytoma.
I was diagnosed with P.O.T.S. back in 2004. I can have raises in blood pressure taken two minutes after standing. I think I have the hyperadrenergic form of POTS, where you can emit high levels of norepinephrine while standing (though I have not had this theory tested). Norepinephrine is part of the autonomic nervous system and is emitted to help maintain blood pressure. I think in hyperadrenergic POTS it goes overboard and can actually make you have high blood pressure standing.
However, I am not positive I don't have an adrenal tumor, as I have had incomplete testing recently for this. This year, my norepinephrine one time measured higher than I've ever seen it at 515 (normal range sitting 0-399). Now I was sitting for the test, but I had been standing to go to the lab chair and the high end of normal for standing in a reference range I've seen is 515. However, I had never had this high of a level before. But pheochromoctyomas often emit much higher levels even than that. Did you know that if the norepinephrine goes high enough, it can cause a panic attack according to what I've read?
If they do a clonidine suppression test on you, as I had done by order of an endocrinologist because of the 515 number, I discovered they are supposed to do a blood metanephrine test at the same time, which the doctor didn't order at the same time for me. Also, I've read on national institute of health, a U.S. gov website as well as another website from an article done by researchers in the Netherlands... and they say a glucagon stimulating test is also necessary (which I didn't get either) because a clonidine suppression test on it's own is not enough to rule out pheochromocytoma.
The fact you have symptoms at times while laying down means they should take seriously testing you for pheochromocytoma. Some believe from research that plasma free metanephrines is one of the most sensitive tests for detecting this type of tumor. This tests the inactive metabolites of epinephrine and norepinephrine in your blood (if I remember what I've read correctly).
This type of tumor can have quiet periods, where it is not emitting high levels of catecholamines and those can measure as normal during such times. I think you might want a plasma free metanephrine test when you are having an unquiet period to be doubly sure of getting the most accurate result. It is a fasting test and you should avoid tylenol at least 48 hours prior to the blood draw. See lab tests online for all the instructions they have on there.
In those routine blood tests, did they test your TSH? How about your free T3 and T4?
However, I am not positive I don't have an adrenal tumor, as I have had incomplete testing recently for this. This year, my norepinephrine one time measured higher than I've ever seen it at 515 (normal range sitting 0-399). Now I was sitting for the test, but I had been standing to go to the lab chair and the high end of normal for standing in a reference range I've seen is 515. However, I had never had this high of a level before. But pheochromoctyomas often emit much higher levels even than that. Did you know that if the norepinephrine goes high enough, it can cause a panic attack according to what I've read?
If they do a clonidine suppression test on you, as I had done by order of an endocrinologist because of the 515 number, I discovered they are supposed to do a blood metanephrine test at the same time, which the doctor didn't order at the same time for me. Also, I've read on national institute of health, a U.S. gov website as well as another website from an article done by researchers in the Netherlands... and they say a glucagon stimulating test is also necessary (which I didn't get either) because a clonidine suppression test on it's own is not enough to rule out pheochromocytoma.
The fact you have symptoms at times while laying down means they should take seriously testing you for pheochromocytoma. Some believe from research that plasma free metanephrines is one of the most sensitive tests for detecting this type of tumor. This tests the inactive metabolites of epinephrine and norepinephrine in your blood (if I remember what I've read correctly).
This type of tumor can have quiet periods, where it is not emitting high levels of catecholamines and those can measure as normal during such times. I think you might want a plasma free metanephrine test when you are having an unquiet period to be doubly sure of getting the most accurate result. It is a fasting test and you should avoid tylenol at least 48 hours prior to the blood draw. See lab tests online for all the instructions they have on there.
In those routine blood tests, did they test your TSH? How about your free T3 and T4?
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