Anyone here ever seen Dr Gupta in the UK?

[Nin]

Just wondering if anyone has ever had any help from Dr Gupta in the UK for pots? What was your experience?

I'm currently on bisoprolol and I just don't feel any different. It's brought my heart rate down and blood pressure ok but still struggling to stand for long and still getting all my symptoms. My main one is siezures when on my feet too long or from walking I get them. I was really hoping beta blockers would help but they're not stopping the siezures. Nobody seems to know anything about siezures and pots but hoping Dr Gupta will understand what's going on.

[Pistol]

@Nin - I too experience seizures from POTS and during the years of experimenting with meds I have found that not one med alone has helped me but rather a combination of meds. Every time I was placed on a new med I was expecting everything to just stop - but of course it did not. Only by experimenting with different drugs did I find improvement. At first we had to find the right Betablocker to control my HR and palpitations, then a calcium channel blocker to counteract the vasoconstriction causing the seizures ( by cutting off the circulation to the brain ) and then another one to lower the BP; SSRI to help normalize the neurotransmitters …  And of course once the worst symptoms were under control there were still meds to be added to help with fatigue, brain fog, GI symptoms etc etc … I would not expect more than control of HR and BP from simply taking a BB. Many inexperienced physicians seem to think that if your HR and BP return to normal ranges than your symptoms will too. Unfortunately that is wishful thinking and not reality. 

I have heard a lot of good things about Dr Gupta from patients on this forum that have seen him. As options for autonomic specialists seem limited in the US it may be a good idea to check him out!!!! Good luck! 

P.S. If you look up   pots videos Dr Gupta UK   you will find a lot of helpful videos he made especially for POTS patients. 

 

[Nin]

12 hours ago, Pistol said:

@Nin - I too experience seizures from POTS and during the years of experimenting with meds I have found that not one med alone has helped me but rather a combination of meds. Every time I was placed on a new med I was expecting everything to just stop - but of course it did not. Only by experimenting with different drugs did I find improvement. At first we had to find the right Betablocker to control my HR and palpitations, then a calcium channel blocker to counteract the vasoconstriction causing the seizures ( by cutting off the circulation to the brain ) and then another one to lower the BP; SSRI to help normalize the neurotransmitters …  And of course once the worst symptoms were under control there were still meds to be added to help with fatigue, brain fog, GI symptoms etc etc … I would not expect more than control of HR and BP from simply taking a BB. Many inexperienced physicians seem to think that if your HR and BP return to normal ranges than your symptoms will too. Unfortunately that is wishful thinking and not reality. 

I have heard a lot of good things about Dr Gupta from patients on this forum that have seen him. As options for autonomic specialists seem limited in the US it may be a good idea to check him out!!!! Good luck! 

P.S. If you look up   pots videos Dr Gupta UK   you will find a lot of helpful videos he made especially for POTS patients. 

 

Yes you're are right beta blockers alone is not going to fix this. The specialist I seen seemed adamant that I'll be on my way with beta blockers and then I lost hope again when I felt no change. I will email him and say this is not working and if I feel he can't help I will see Dr Gupta. I have watched his video's on YouTube and he does seem very knowledgeable. He seems like a real nice guy. 

When I get these siezures coming on or when I can't even speak my legs are really hot, heavy and start to shake. I think to myself surely this is to do with vasconstriction as it feels like my blood is just not flowing. What medication should they give me for that? I'm pretty confident if they can give me medicine to help vasconstriction it's going to help a lot. 

Did you or do you have any problems with being off balance? I'm off balance everyday like on a boat. My eyes are really bad too, I struggle looking at my phone and anything I need them to focus on make me so much more off balance. 

 

[Pistol]

9 hours ago, Nin said:

When I get these siezures coming on or when I can't even speak my legs are really hot, heavy and start to shake. I think to myself surely this is to do with vasconstriction as it feels like my blood is just not flowing.

@Nin - hot and red rather signals WIDENING of the vessels, cold and white or blue would be more like vasoconstriction. Pooling of blood in the legs can cause this. Sometimes vasoconstriction can trigger a sudden release of the tightness in the vessels and result in this symptom. 

As to what medicine can help with this - that can only be determined by a physician. Everyone of us is different in both cause as well as treatment of our symptoms. Most POTS patients need to avoid vasodilators - except for certain HPOTS cases that have problems with vasoconstriction from excess norepinephrine, so it is really important that the exact cause of the seizures and other symptoms gets discovered. 

10 hours ago, Nin said:

Did you or do you have any problems with being off balance?

Yes - I used to. In the beginning of my illness I would walk down a hallway at work ( hospital ) and all of a sudden I had to hold on to the railing because it felt like a trap door opened up under me and I felt as if I was falling. Sometimes I still will suddenly loose my balance, lean to the left and even fall into walls or objects. I am not sure what causes this but I think it has to do with a sudden drop in BP, since it often happens after standing up. In my case I suffer from both high and low BP.  I also experience problems with my eyes as you describe. I sometimes have difficulty focusing or my vision becomes blurry. Have you ever had a thorough neurological work-up? Despite a dysautonomia diagnosis they should rule out other conditions that can have the same symptoms. 

I hope you will get to consult with Dr Gupta and I hope the wait will not be too long!!! 🙃

 

[Nin]

10 hours ago, Pistol said:

@Nin - hot and red rather signals WIDENING of the vessels, cold and white or blue would be more like vasoconstriction. Pooling of blood in the legs can cause this. Sometimes vasoconstriction can trigger a sudden release of the tightness in the vessels and result in this symptom. 

As to what medicine can help with this - that can only be determined by a physician. Everyone of us is different in both cause as well as treatment of our symptoms. Most POTS patients need to avoid vasodilators - except for certain HPOTS cases that have problems with vasoconstriction from excess norepinephrine, so it is really important that the exact cause of the seizures and other symptoms gets discovered. 

Yes - I used to. In the beginning of my illness I would walk down a hallway at work ( hospital ) and all of a sudden I had to hold on to the railing because it felt like a trap door opened up under me and I felt as if I was falling. Sometimes I still will suddenly loose my balance, lean to the left and even fall into walls or objects. I am not sure what causes this but I think it has to do with a sudden drop in BP, since it often happens after standing up. In my case I suffer from both high and low BP.  I also experience problems with my eyes as you describe. I sometimes have difficulty focusing or my vision becomes blurry. Have you ever had a thorough neurological work-up? Despite a dysautonomia diagnosis they should rule out other conditions that can have the same symptoms. 

I hope you will get to consult with Dr Gupta and I hope the wait will not be too long!!! 🙃

 

 

when I look at my legs when they feel funny I have like this blue/purple web type appearance on my legs, my feet feel freezing but my legs feel hot. So I'm really not sure which one is actually happening, vasconstriction or widening. 

I've seen a neurologist but didn't mention my eyes. My balance I did. I've had problems with my both ears which resulted in surgery near brain and wasn't right since. Neurologist knows all this, did examination but offered no further testing. She knows I struggle upon standing and just said at the time about tilt table test. I don't know what's pots and what's been caused from the trauma anymore. Because pots got so many symptoms it's hard to know

When you said people with pots need to avoid vasodilation....what things will cause this? So when we stand up naturally our blood vessels should tighten is that right and in pots they don't? Sorry I just can't get my head round it all still. My brain just don't seem to work anymore 😔 I feel like I can't absorb information like I should. 

 

[Pistol]

13 hours ago, Nin said:

when I look at my legs when they feel funny I have like this blue/purple web type appearance on my legs, my feet feel freezing but my legs feel hot.

This sounds like Livedo Reticularis, or spasms of blood vessels. This is quite common in POTS - I have it too. 

 

13 hours ago, Nin said:

When you said people with pots need to avoid vasodilation....what things will cause this?

MOST people with POTS need to avoid vasodilators, except for HPOTS patients. They can actually improve on them. Remember - there are different types of POTS and they all have different causes and therefore may require different meds. This is the reason treatment for POTS is so challenging and very individually.  Here is an interpretation from my article about blood vessels that may explain it better to you: 

( Quote:

Vasodilation

Widening of blood vessels increases blood flow, lowers blood pressure, and occurs when the smooth muscle cells within the walls relax. This can occur in response to endogenous factors such as hormones, chemicals, or nerve impulses. An increase in carbon dioxide, potassium ions, hydrogen ions, and adenosine can all lead to vasodilation. Another cause is the release of the hormone epinephrine caused by the activation of beta-2 receptors in the muscles of the blood vessels. Other causes for vasodilation are the release of nitrous oxide ( a substance released by certain nerves during inflammation ) as well as the release of histamine.  (1,2)

Exogenous factors that can cause vasodilation are heat, certain foods, or beverages (e.g. alcohol ) or light and noises from the environment. Pharmaceuticals can also cause vasodilation and can be used to treat certain conditions like angina or hypertension.  Vasodilation can lead to hot, flushed skin by drawing circulation to the periphery and away from the core. Other symptoms include sweating, tachycardia, nausea, dizziness, vision and hearing changes, headaches, and more. (1,2) 

End Quote )

In many cases pooling of blood in the lower limbs is the culprit, which is a common cause of orthostatic intolerance ( difficulty being upright ) in POTS. Causes for this are varying. That is the reason why a specialist in autonomic conditions is so improtant - they understand this and know how to determine what type of POTS you have. Not every Neurologist or Cardiologist has the expertise to know this. 

13 hours ago, Nin said:

My brain just don't seem to work anymore 😔 I feel like I can't absorb information like I should. 

Common state of mind for people with POTS - less blood circulating to the brain can cause brain fog. As you see - we all share many symptoms. This was always a comfort to me - to know that I am not a special case or that my condition is rare, but that many others with this disorder experience the same thing AND HAVE FOUND WAYS TO IMPROVE. Just keep looking for answers by finding competent doctors. 

[Nin]

13 hours ago, Pistol said:

This sounds like Livedo Reticularis, or spasms of blood vessels. This is quite common in POTS - I have it too. 

 

MOST people with POTS need to avoid vasodilators, except for HPOTS patients. They can actually improve on them. Remember - there are different types of POTS and they all have different causes and therefore may require different meds. This is the reason treatment for POTS is so challenging and very individually.  Here is an interpretation from my article about blood vessels that may explain it better to you: 

( Quote:

Vasodilation

Widening of blood vessels increases blood flow, lowers blood pressure, and occurs when the smooth muscle cells within the walls relax. This can occur in response to endogenous factors such as hormones, chemicals, or nerve impulses. An increase in carbon dioxide, potassium ions, hydrogen ions, and adenosine can all lead to vasodilation. Another cause is the release of the hormone epinephrine caused by the activation of beta-2 receptors in the muscles of the blood vessels. Other causes for vasodilation are the release of nitrous oxide ( a substance released by certain nerves during inflammation ) as well as the release of histamine.  (1,2)

Exogenous factors that can cause vasodilation are heat, certain foods, or beverages (e.g. alcohol ) or light and noises from the environment. Pharmaceuticals can also cause vasodilation and can be used to treat certain conditions like angina or hypertension.  Vasodilation can lead to hot, flushed skin by drawing circulation to the periphery and away from the core. Other symptoms include sweating, tachycardia, nausea, dizziness, vision and hearing changes, headaches, and more. (1,2) 

End Quote )

In many cases pooling of blood in the lower limbs is the culprit, which is a common cause of orthostatic intolerance ( difficulty being upright ) in POTS. Causes for this are varying. That is the reason why a specialist in autonomic conditions is so improtant - they understand this and know how to determine what type of POTS you have. Not every Neurologist or Cardiologist has the expertise to know this. 

Common state of mind for people with POTS - less blood circulating to the brain can cause brain fog. As you see - we all share many symptoms. This was always a comfort to me - to know that I am not a special case or that my condition is rare, but that many others with this disorder experience the same thing AND HAVE FOUND WAYS TO IMPROVE. Just keep looking for answers by finding competent doctors. 

Probably would help if I knew which type of pots I have. When I asked the doctor he said just the normal type. I'm definitely going to make an appointment with Dr Gupta, I suppose I'll have to wait for everything to go back to normal.

 

Thanks again for your good advice!