Sam123

Thanks a lot @Missy M for sharing your experience. Yes, it could be excessive caffeine intake. I suspected that small amount of salt can do that. 

Hi All, 

Only I have query about considering salt for fast HR and low BP. My blood pressure is usually in the range 90/60 to 110/70. My heart rate increases upon standing as my BP decreases upon standing by 10 to 15 points. I tried increasing salt intake but I noticed some days my blood pressure is 140/90 to 150/90 in the afternoon. In the night it returns to its normal range. Is this normal? I consume about 1 teaspoon daily.   Now I stopped taking salt but my BP is low, which causes fatigue and lightheadedness especially in the morning. Has anyone else experienced this?

16 hours ago, corina said:

If I'm correct, dr Svetlana Blitshsteyn, who is in our medical advisory panel, is willing to work on line, you can find info on her  here:
 

Hope this helps!

@corina Thanks a lot. I will try to cntact her.

18 hours ago, angelloz said:

Keep reading information about POTS and autonomic dysfunction.  Many actually do better without medication. I became very sensitive to any medication.  Moderate exercise helps some depending on your current level of activity. If you suspect any type of mast cell involvement you could try some OTC antihistamines, providing you have taken them before. Google Dr. Afrin and MCAD to check into that.

@angelloz Thanks a lot. I tried yesterday  Atarax (hydroxyzine) and today I feel a big difference. Even the standing heart rate difference is around 18-20 beats. I think I have a sort of MCAD, but I dont have any idea about this issue. 

Dear all,

Is there any way to contact  doctors that are interested in POTS and are willing to help online? I want to send my measurements and symptoms, so that they could help, given that, here no body can help in diagnosis of this issue.

Thank you in advance.

@Greyhound Thanks for the update. I have been reading your status and your symptoms are quite similar to mine. Im eager to see what are your results. Of course, I hope not POTS. Please keep update..

1 hour ago, angelloz said:

I too do better with standing and walking at home...probably knowing I can lie down suddenly if I need to. Staying hydrated and eating salty foods helps me but I have low blood volume. Have you done the poor man's tilt table test.??? Take your pulse rate lying down for at least 10 minutes. Then 1 minute after standing, then 5 minutes after standing. I wish you all the best. I'm sure others will have some thoughts to add. Ask any additional questions that you may have.

@angelloz Thanks for the information. Actually, I do measurements daily for the BP and HR. Below is an example of what I get:

8-11-2017 (8 AM) - Mild Symptoms

Laying down:      100/70             75

Standing:

1 min.                    100/70            93

2 min.                     91/65             88 

3 min.                     94/76             89

5 min.                     97/73             94

8min.                       97/72            94 

10 min.                    95/74            92

9-11-2017 (10 AM) Mild Symptms

Laying down:      105/62              86

Standing:

1 min.                    97/72              106

3 min.                     96/70             102 

5 min.                     103/74           101

7 min.                     93/71              102

10 min.                    90/71             108

10-11-2017 (8 AM, while in Bed) - Moderate Symptoms

Laying down:      111/70                85

Standing:

1 min.                   112/101             117

2 min.                   130/108             113 

3 min.                   103/74               115

5 min.                   93/71                 107

6 min.                   90/71                  116

9-11-2017 (10 AM) Moderate SYmptoms

Laying down:       102/70              90

Standing

1 min.                    102/67            120

2 min.                     98/70             115 

5 min.                     98/73             117

7 min.                     99/72              117

10 min.                    99/71             120

I have two specific queries for whose diagnosed with POTS. 

1- When taking medication for POTS, can you go out and walk for about half an hour? For me, when taking propranolol, I can walk such period. And even sometimes without medication. But what I feel worse is the fear and brain fog when go far from my house. If Im near my house I can walk for longer periods.

2- Do you feel dizzy instantly after standing up? I dont feel dizziness after standing although HR increases in most times by 25-30 beats. Inside the  house, I can move  and still standing without feeling dizziness. What I feel in fact is muscle weakness and some shaking in legs if I stayed for prolonged period (1 hour or so). I can do upright aerobic exercises for 20 minutes (with propranolol or without it). My heart rate reach 140 beats after 20 minutes upright exercise or running inside house.

Just I want to take an idea about my case. I live in Yemen, and I will stay here my lifetime without diagnosis. We dont have TTT  and If I want such test, I must travel to another country, which is very difficult due to the current unrest here in Yemen. Therefore, I hop you could help me understand what is happening to me.

I noticed that my resting heart rate in the morning in much higher than in the evening. When I wake up in the morning, while Im in bed, my resting heart rate is between 85-90. This also contributes to increasing the standing heart rate (more by 25-30 beats). However, in the evening ( 9PM - 11PM), my resting heart rate is in the average between 60-70. Of course more energetic in the evening. Have anyone has like these readings. I suppose that HR in the morning should be lower after 7 hours sleep. Inst this strange!

I've been having a hard time getting a diagnosis so I just wanted to run some of my symptoms to you all to see if this could actually be a  POTS or other disease.  I did a laying/standing test at home and I'm really curious what everyone thinks about my numbers. Do these look like POTS? I dont take any medications, but there are mild to moderate symptomsas shown below.

8-11-2017 (8 AM) - Mild Symptoms

Laying down:      100/70             75

Standing:

1 min.                    100/70            93

2 min.                     91/65             88 

3 min.                     94/76             89

5 min.                     97/73             94

8min.                       97/72            94 

10 min.                    95/74            92

9-11-2017 (10 AM) Mild Symptms

Laying down:      105/62              86

Standing:

1 min.                    97/72              106

3 min.                     96/70             102 

5 min.                     103/74           101

7 min.                     93/71              102

10 min.                    90/71             108

10-11-2017 (8 AM, while in Bed) - Moderate Symptoms

Laying down:      111/70                85

Standing:

1 min.                   112/101             117

2 min.                   130/108             113 

3 min.                   103/74               115

5 min.                   93/71                 107

6 min.                   90/71                  116

9-11-2017 (10 AM) Moderate SYmptoms

Laying down:       102/70              90

Standing

1 min.                    102/67            120

2 min.                     98/70             115 

5 min.                     98/73             117

7 min.                     99/72              117

10 min.                    99/71             120

57 minutes ago, p8d said:

@Sam123 I get something like 4 or more gms of salt per day and take fludricortisone which helps your body retain blood volume.  I have never fainted but get more symptoms, including dizziness and shakiness the longer I am upright.  I'm very disabled and housebound so not a good comparison.  After three years of trying various drugs I seem to have some that help being upright somewhat now.  I've also been going to physical therapy for a year and on a good day, maybe once a month, I can stand and walk for around an hour.  I ride a stationary bike and use a rowing machine three times a week and do strength training most others.  I get severe sensory overstimulation whenever I go out, moving vehicles, Dr offices, the PT place.  My neurologist told me it's a marathon and will take years to see improvement but I will never be like I was before.  I was a professor and traveled the world but I have accepted and adjusted to my new life.

@p8d Im very sorry to hear about your situation. I hope you are getting better soon. I suffer also from sensory overstimulation especially at the supermarkets. I hope we can adjust with these symptoms. 

2 hours ago, p8d said:

I usually feel better in the evenings likely because I have had so much fluid during the day that things stabilize somewhat.  Are you drinking several liters of water (I drink about 4) and seriously increasing salt intake?  Those are standard treatments for getting blood pressure elevated and heart rate better controlled.  I find if I quickly drink about 750mls of cold herbal tea quickly a few minutes before standing I'm not so dizzy and heart rate and blood pressure are better, at least for awhile.

@p8d Thanks for the reply. Actually, I take about 1.5-2 liters per day. Also I add about half spoon of table salt to the water and drink it.  But when Im at home quick standing and walking inside home causes no and sometimes slight dizziness. My problem is when I get out for walking, there is a mix of dizziness and fear from fainting that prevent me from walking. By the way, from your experience, does fainting happen when the HR is normal, say 100-120 during walking?

12 hours ago, yogini said:

Hi Sam,

 If you took propanalol that would stabilize your heart rate, which would make it harder to determine if you have POTS.   Did you have a higher HR which made the doctor give you propranolol?

Also, I would recommend keeping  track of both your HR and BP sitting and standing for several weeks.  You can have ea good day, or a good few days.  You will see a pattern over time i you have dysautomia.  One day just isn't enough.

When I was sickest, i went from 75/80 sitting to 120/130 standing.  Everyone is different, but I think the numbers that I describe are most typical for POTS.  A healthy person would have an increase of about 10-15 minutes upon standing maybe go from 75 sitting to 90, which sounds like what you describe.

 

 

@yogini Hi Yogini

Thanks for your help and support. Actually, my symptoms first happened to me b when I was 30 years old but disappeared in a month. After that, they happen every two years, take a month and disappear. Meanwhile, I have slight dizziness when Im teaching in the classroom or in meeting, etc, but never bothered me from doing my work.   During the last period, I didnt know that it is POTS. One doctor gave me propanalol in 2009 because he noticed high HR but didnt mentioned this is POST. So, Im used to take a 10 mg  propanalol when necessary. May be 10 tablets a month. But, nowadays it seems that the symptoms are more severe. I cant go out because now I know it could be POTS and afraid of fainting! This complicated the problem. But the difference in HR rarely exceed 30 beats and when I take propanalol, the maximum is 80 sitting to 100 standing with 20 beats difference.

@p8d Thanks for the information. Can I understand from your description that stress can cause the symptoms of POTS? I havent been diagnosed with POTS but I find Propronalol very helpful. Only 10 mg a day. This what makes me suspect that I dont have POTS. Only adrenaline surge and anxiety!

@p8d I haven't seen POST specialist because there are no such doctors interested in POTS in Yemen. I will see a cardiac  soon. Do you mean by catecholamines test measuring HR and BP?

Thank you.

Differentiating Adrenal Insufficiency from POTS is tricky. Almost same symptoms. Can you please describe some hints that could help differentiating between them. I haven't been diagnosed  yet. But I feel very tired even Im laying down and sometimes I feel the fainting episode when Im sitting or even laying down.  There is almost always 25-30 beats difference between laying down and standing and rarely exceed 30. When I feel more relaxed, and happy the difference reduces to 20 beats (80 to 100). 

Sometimes I feel like Adrenal rush, fear, and increased heart rate when Im sitting. Properanolol helps a lot in such case. Can I conclude from the last description that I dont have Adrenal Insufficiency because adrenaline causes these symptoms? Does Adrenal Insufficiency means also low adrenaline or it is only related  to low cortisol?

I started to suspect that my symptoms are more related to anxiety.

@corina @vepa @yogini Only I wanted to share with you what I recorded today.

7:00 AM

laying down: 70

sitting:80

standing: 100

Standing 2 min: 94

Standing 5 min and up: 94

9:00 AM

laying down: 80

sitting: 90

standing: 109

standing 5 min: 104

I haven't yet diagnosed with POTS but I felt bad symptoms today with the above readings. I took 10 mg Propranolo afternoon,and it helped me a lot. My HR was 70 laying down and 85 standing. Even when I walked around the house it still 85. 

@vepa Thanks for the information. Actually, my cardio doctor told me that it is not Addison's disease because if it is, my skin will be black in part. Im not sure he is correct. Anyway, I think I should have the test done for this. Could you please give me information about the test? Is it Cortisol test only or stimulated test? Related to this, I find Propranolol helps a lot, and Im not sure if this an indication that my  symptoms are related to POTS but not Addison disease. Regarding pernicious anemia,I had B complex injections (without test, my old test was B12 =580) but it didn't help.

9 hours ago, yogini said:

POTS symptoms wax and wane.  You will not have them all the time.  Many of us feel better during the day.  I would encourage you to measure your HR and BP when you feel your worst symptoms.   You should be able to buy an ECG accurate watch.  I think there is a good chance your HR is higher when this is happening and, if so, that will be good evidence to confirm your POTS.

Thanks Yogini for your reply. Do you mean accurate BP and HR meter? 

For the symptoms such as nausea and brain fog, I feel them constantly even if Im laying down. However, when walking around I feel like I will faint. 

Thanks Corina for the reply. I will try to find a doctor interested in this issue. What confused me is that sometimes especially in the evening, my symptoms almost disappear and I notice that the difference in HR is normal (10-15)! 

Hello everyone,

This is my first topic in this forum. Im 40 years old man. Im suffering from strange symptoms since 2 months. My symptoms are: dizziness, nausea, unsteadiness, extreme weakness and fatigue. I cant tolerate walking outside. Just few minutes and then I feel like I will fall and my head gets heavy and I feel nauseous and fear. I made echo two times and the results were normal. All other tests: CBC, sugar, minerals, etc. All of them were normal except slight deficiency in vit D. I suspect that I have POTS but here in Yemen the doctors are not aware of this disease. I have also low blood pressure  (range from 90/60 to 110/70). Often my BP is  110/70, but also I feel these symptoms with this reading. My resting HR is usually 85 and upon standing the HR increases to 120  but it still at this reading or in most times the difference between laying down and standing remains at 25-28. Example of recording this morning is a s below:

Laying down 86

After standing: 120

After 1 minute: 114

3 min: 115

5 min: 114

10 min: 114

Does anyone has like these symptoms and readings. My symptoms indicated above happened to me before 2 years and before 6 years and disappeared. However, even when the symptoms disappear, I still suffer from slight dizziness upon standing for long time (I teach in the university).  But this time  the symptoms are more severe. During the last 2 months, Im  in the home just go for appointments or so. Thank you for your help.