Lightheaded/ pre syncope normal vitals

[Bailee]

I’m still having lightheadedness pre syncope despite my vitals being normal. My lowest was 105/71 heart rate 74. Highest after going up the stairs was 125/85 heart rate 96 this fluctuation occurred within 7 minutes. I was trying to cut up some snacks in the kitchen and I was already dizzy before but my blood pressure wasn’t bad. As I started to move around more I got dizzy but vitals not low. On midrodine which keeps my blood pressure from dropping low but I still have lightheadedness. The other day I was so symptomatic I had to use my wheelchair to go out with my mother I stood us to go to the car after exiting store and my blood pressure was 110/59. I don’t know what to do. Messaging my doctors and they are saying it’s deconditioning and could take time however it’s been a year since diagnosis and on ivabradine. most  days I can workout but the lightheadedness has been a persistent symptoms since I was 14 and the dysautonomia started. If I do complete my treadmill walking workout I’m wiped out for a couple hours. But walking around stores is hard for me , since I symptomatic. I’m taking in 100 oz water , 5000 mg salt, and I always wear compression knee highs when I go out. I don’t want to badger my doctors since I am a complicated patient but my quality of life is being effected. Better than it was before the diagnosis but I feel as if I’ve hit a brick wall. Any one know what to do? What I should ask my doctors?

[MikeO]

34 minutes ago, Bailee said:

I’m still having lightheadedness pre syncope despite my vitals being normal. My lowest was 105/71 heart rate 74. Highest after going up the stairs was 125/85 heart rate 96 this fluctuation occurred within 7 minutes. I was trying to cut up some snacks in the kitchen and I was already dizzy before but my blood pressure wasn’t bad. As I started to move around more I got dizzy but vitals not low. On midrodine which keeps my blood pressure from dropping low but I still have lightheadedness. The other day I was so symptomatic I had to use my wheelchair to go out with my mother I stood us to go to the car after exiting store and my blood pressure was 110/59. I don’t know what to do. Messaging my doctors and they are saying it’s deconditioning and could take time however it’s been a year since diagnosis and on ivabradine. most  days I can workout but the lightheadedness has been a persistent symptoms since I was 14 and the dysautonomia started. If I do complete my treadmill walking workout I’m wiped out for a couple hours. But walking around stores is hard for me , since I symptomatic. I’m taking in 100 oz water , 5000 mg salt, and I always wear compression knee highs when I go out. I don’t want to badger my doctors since I am a complicated patient but my quality of life is being effected. Better than it was before the diagnosis but I feel as if I’ve hit a brick wall. Any one know what to do? What I should ask my doctors?

Hi @Baileejust my feeling i think you need to make a change in meds (just my gut feeling). I do get like you are describing and have been pushing the envelope with my care providers but thankfully we are still at it. I was in at my dietitians appointment and as i was getting up i went presyncope. Felt bad for the dietitians intern she almost jumped across the desk to keep me from falling.

I would really ask your Doc's to trial you on another beta-blocker. ivabradine is a bit potent. My care team won't put me on this one.

   

[Bailee]

22 minutes ago, MikeO said:

Hi @Baileejust my feeling i think you need to make a change in meds (just my gut feeling). I do get like you are describing and have been pushing the envelope with my care providers but thankfully we are still at it. I was in at my dietitians appointment and as i was getting up i went presyncope. Felt bad for the dietitians intern she almost jumped across the desk to keep me from falling.

I would really ask your Doc's to trial you on another beta-blocker. ivabradine is a bit potent. My care team won't put me on this one.

   

Thank you for the reply? When I bring this up to doctors what beta blocker do you recommend or has worked for you. Does ivabradine cause lightheadedness?

[MikeO]

29 minutes ago, Bailee said:

Thank you for the reply? When I bring this up to doctors what beta blocker do you recommend or has worked for you. Does ivabradine cause lightheadedness?

Hi @Bailee From what i have read ivabradine can cause dizziness it also will reduce your heart rate (from my understanding) not sure about the blood pressures. Looking at your posted bp's i do see one of your diastolic readings go below 60. For me if i fall into the 65 or lower i will become symptomatic (just sharing what i feel). Your hr rates to me seem fine (nothing crazy and below 100) again if my hr gets into the 110's or so i will be lightheaded.

I have tried metoprolol as i have read that you did. Not sure if it worked well for me because once my hr's went into the 95's and above i would feel the palpitations (strongly along with other side affects). propranolol is one that has worked for folks (again from what i read is the weaker of the beta-blockers but like most has it's positive side as well as it down sides) . I am taking carvedilol and have done well with it.

Positive side you should be able to switch beta-blockers with out weening off one to start the other.

While i do not know what drug to recommend. I will urge you to try other options like most have. Won't know till you try. This has helped me.

Best

Mike  

[Pistol]

@Bailee unfortunately I agree with what others have said. I was extremely unstable and symptomatic at times, and every time my meds needed to be changed. For years my autonomic specialist tried different meds with different outcomes until we found the right combo. the symptoms of deconditioning are eerily similar to POTS symptoms, and since activity makes us so much worse we will do less, hence worsening the condition. 

You mention that exercising on the treadmill leaves you exhausted - I have found that upright exercises are not good for me during flares since being upright triggers POTS. I instead do light exercises while lying down or sitting, and only slowly increase upright activity TO TOLERANCE. For example - I will exercise lying down every hours for a minute or so and then count walking to the bathroom etc as upright "exercise". That gives my body time to adjust slowly, and once I can do this without significant symptoms I will increase the time active. Eventually I will go on my rowing machine, which i tolerate better than upright exercises ( due to orthostatic intolerance ). There are several articles suggesting exercises for POTS - look up exercise suggestions for POTS patients. 

You also mention that you have to use a wheel chair again at times - I do also when bad. If I get that bad I really have to avoid doing anything upright or overly stimulating unless it is exercise or unavoidable, like trips to the bathroom. I often have to cancel appointments when that bad and do them tele health instead. My friends, family and doctors all are aware of that and work with me. 

As to what beta blocker to try - that is very individual, and most of us tolerate different ones ( since there are so many mechanisms for POTS ). I have tried several and found Carvelidol best suited for me. As @MikeO suggested - it is very important to start any new med at the lowest dose, my specialist recommends pediatric dosages. Once you take it for a week and have no negative symptoms the dosage can slowly be increased until you either find it working of cannot tolerate it. 

Be patient, and be kind to yourself. For me getting frustrated with the limitations and pushing myself beyond my limits has always been the wrong thing to do. 

[JennKay]

@Bailee -- I feel you too!! I will get all the pre-syncope feelings but my vitals will be normal. Have never figured out why either. I've tracked my symptoms and the one thing I know will trigger things is standing for prolonged periods, which for me doesn't have to be that long!! I am taking propranolol to help with random adrenaline surges  and just added florinef about a month ago to help with low BP. Florinef has made a huge difference for me. Like @MikeO, I will get symptoms when my diastolic drops below 60 and Florinef helps with the low BP. Propranolol seems to be the only beta I can tolerate, but unfortunately it doesn't help with my PVCs. I've tried metoprolol, atenolol, and carvedilol -- all of which made me feel very lousy. Like the others have suggested -- keep trying until you find a better combo for you and don't give up hope! We are all different for different reasons. 

[Bailee]

Thank you to everyone who gave advice I’m going to contact my doctors and send them a message. I’ve been having bad palpitations today this was my systolic number should I be concerned ?

[MikeO]

IMO that is postural orthostatic hypotension. No i don't think you need to go to the ER (concerned wise) but just make sure if you you feel lightheaded that you don't hurt yourself. 

I would share the pics with your Doc it is telling. While i can't say if this is a POTS response (to me does not look like it) I will get a drop in blood pressure upon standing (similar to what you are sharing) without a increase in heart rate. This could be med related so that is why i would push to trial other drug options or some other stressor. I will be orthostatic at times with a elevated hr after eating.

I have been diagnosed with nOH (neurogenic orthostatic hypotension) and my bp's will drop 40 points  + upon standing or being tilted without much of a change in heart rate (maybe a few beats).

Be persistent and keep collecting vitals data it will only help.

 

 

[Pistol]

@Bailee the first number ( 143/86 ) is slightly elevated but not concerningly so. This is often caused by an increase in sympathetic response causing vasoconstriction. Was this reading when supine by any chance? ---- The second number ( 101/75 ) is clearly a drop of over 30 mmHg, so within the criteria for orthostatic hypotension. It is normal for the BP to drop when standing up but usually balances out within one minute.  But I do have one concern - wrist cuffs are not as accurate in reading BP, since they measure the pressure furthest away from the heart. So if your arms are cold or hot or your HR is slow the readings may be different. This can display vastly different numbers within seconds. To determine the accuracy of the readings I would have someone check a manual BP and then compare it to the reading of your machine. You can get a manual BP reading at many retail pharmacies. 

You are the perfect case for a symptom diary! Once the accuracy of your machine is confirmed you could write down your numbers several times a day at the same time and also when you are symptomatic. For example: 6 am 144/90, lying down. 6:15 am 100/58, standing up, dizzy ...... if you follow through with this for even just a week you might detect a clear pattern that can be helpful in determining a treatment and also clue in your physicians. 

Here is a very good article about OH that may help you determine if this is what you might have 

Neurogenic orthostatic hypotension: pathophysiology, evaluation, and management - PMC (nih.gov)

[MikeO]

@Baileeif by chance you do consider a new BP monitor i would suggest one that is Bluetooth enabled that way you can run an app on your smart phone to capture the readings and easily add notes. I have found it more convenient as well as being able to analyze the data. 

Omron has one that goes for around $79.00 i bought a Oxiline (more pricey) $120.00. For the phone app i use MedM. MedM also has a web portal that is free where you can pull more reports.

 

[Bailee]

On 9/20/2022 at 9:47 AM, MikeO said:

@Baileeif by chance you do consider a new BP monitor i would suggest one that is Bluetooth enabled that way you can run an app on your smart phone to capture the readings and easily add notes. I have found it more convenient as well as being able to analyze the data. 

Omron has one that goes for around $79.00 i bought a Oxiline (more pricey) $120.00. For the phone app i use MedM. MedM also has a web portal that is free where you can pull more reports.

 

Thank you I have a Bluetooth one that my mom just got me. I’ve been taking measurements 2 x a day for the past 2 days. I’m noticing even when my blood pressure doesn’t drop as much I’m still symptomatic especially when standing. My doctor have me lying down for 5 minutes, sitting for 5, and standing 10. However I can’t make it to the ten minute mark and am struggling trying to keep myself conscious at the 5. I don’t know if it’s the blood vessel in my legs not constricting enough, if my blood can’t get to my head /reduced blood flow/low cardiac output, or if I’m getting flooded with adrenaline. I’m just always symptomatic walking or standing high , normal , or low blood pressure?I’m gonna ask my doctors about this. I’m wondering why I’m getting the lightheadedness considering I’m on midrodine 3 x a day 2.5 mg. 
 

here are the measurements 

Laying down 5 minutes 

HR: 60

Blood pressure ; 114/81

Sitting 1 minute : 

HR: 59

Blood pressure: 114/92

Sitting 5 minutes:

HR: 61

Blood pressure: 108/70

Standing 1 minute 

HR: 68

Blood pressure: 113/89

 

 

Standing 5 minutes

HR: 78

Blood pressure: 114/76

 

Standing 10 minutes 

HR: 

Blood pressure: had to take a break spaced out lightheaded 

[MikeO]

18 minutes ago, Bailee said:

Thank you I have a Bluetooth one that my mom just got me. I’ve been taking measurements 2 x a day for the past 2 days. I’m noticing even when my blood pressure doesn’t drop as much I’m still symptomatic especially when standing. My doctor have me lying down for 5 minutes, sitting for 5, and standing 10. However I can’t make it to the ten minute mark and am struggling trying to keep myself conscious at the 5. I don’t know if it’s the blood vessel in my legs not constricting enough, if my blood can’t get to my head /reduced blood flow/low cardiac output, or if I’m getting flooded with adrenaline. I’m just always symptomatic walking or standing high , normal , or low blood pressure?I’m gonna ask my doctors about this. I’m wondering why I’m getting the lightheadedness considering I’m on midrodine 3 x a day 2.5 mg. 
 

here are the measurements 

Laying down 5 minutes 

HR: 60

Blood pressure ; 114/81

Sitting 1 minute : 

HR: 59

Blood pressure: 114/92

Sitting 5 minutes:

HR: 61

Blood pressure: 108/70

Standing 1 minute 

HR: 68

Blood pressure: 113/89

 

 

Standing 5 minutes

HR: 78

Blood pressure: 114/76

 

Standing 10 minutes 

HR: 

Blood pressure: had to take a break spaced out lightheaded 

Glad to hear you have a new BP monitor. Not sure what else to suggest. Your Vitals look good. Even your HR increased as it should. I do from time to time present with normal bp/hr despite being symptomatic but that always happens when making a positional change or my heart rate is a bit low (70) while being upright i will be lightheaded. I do know my sympathetic nervous system does not always fire of correctly and when my vascular system and heart don't respond to a drop in pressure i will get symptoms like you.

Do you hear and whooshing or hear a even heartbeat in your ears? 

I would bring this up with your Doc

[Bailee]

Thank you to everyone who gave advice talked to my doctors he wants me to take midrodine 5 mg x 3 a day. I had my appointment with the balance test and audio test for vestibular testing. There’s nothing damaged with my inner ear or inner ear nerves. Still have an apportionment with an otolaryngologist to look at my neck and brain hopefully I get answers for the woozy / disoriented/ dizziness.

[MikeO]

1 hour ago, Bailee said:

Thank you to everyone who gave advice talked to my doctors he wants me to take midrodine 5 mg x 3 a day. I had my appointment with the balance test and audio test for vestibular testing. There’s nothing damaged with my inner ear or inner ear nerves. Still have an apportionment with an otolaryngologist to look at my neck and brain hopefully I get answers for the woozy / disoriented/ dizziness.

Glad to hear you are trying and getting help. Keep after it.