Potsies

5 hours ago, Lily said:

You and I are in the same boat: relatively mild symptoms that worse off people might be glad to experience.  As I understand, the heart beats faster because otherwise the blood wouldn't get around well enough.  Here is an example:  perhaps your veins are too stretchy, allowing blood to pool in your feet instead of circulating.  Your body increases release of norepinepherine in an attempt to get the veins to constrict.  The NE also raises your heart rate.  Your end result is an elevated heart rate.  The fatigue comes from all the extra work your heart is doing.  This is just one example.  I am most familiar with this possible mechanism, because I think this is what is happening with me.  There might be other mechanisms and processes that can lead to the same end result.  The severity of symptoms depends on exactly what in your body is malfunctioning.  There are several different malfunctions that can lead to the same end result, so it is all highly individual.

I was thinking maybe stretchy veins, as I do have hypermobile joints and soft stretchy skin, as seen in EDS, but I don't have any of the joint pains or dislocations associated with it, and my POTS symptoms came about quite suddenly just last year. Are you on any medications? What do you fins helps you most with your symptoms?

8 hours ago, Pistol said:

@Potsies - you do not have to have a change in BP to have POTS. Actually they say an increase in HR of 30 bpm WITHOUT a drop in BP is indicative of POTS. Also symptoms longer than 6 months. The fatigue is also the symptom I mind most. And only 30% of people with POTS actually faint. So - yes, it sounds like POTS. Have you had a TTT? --  Most likely you are not that symptomatic because you are still so young and your body has been able to compensate. Have you been increasing salt and fluid intake? Compression stockings? If you have mild symptoms this could help. Good that you are able to walk - exercise is important! But do not overdo it - too much can add to the fatigue. Do you sleep well? Have they checked your Vit D levels? Often in the winter this can be low in many people and can cause fatigue. I was severely deficient in both Vit D and B12 and my symptoms improved with supplementation. I get B12 shots every month. Be sure if they want you to supplement Vit D they order a loading dose - 50,000 units weekly for a few weeks then 2000 units daily. If you do not start with the high dose your levels will not come up. 

I haven't had a TTT done yet, but am on the waiting list for one (the waiting list is very long as there's only one in my province, I'm from Canada). I have tried increasing salt and water and it only helps a tiny bit, but I have chronic gastritis which salt irritates. I do have medical grade 30-40 hmmg thigh high stockings and I don't really notice any difference with them. My vitamin D level is perfect, on the high-normal side and I take sublingual methyl B12 supplements. 

1 hour ago, JimL said:

A couple questions: How old are you? If you're young, maybe 157 beats isn't so much to totally stress you. As far as the ANA goes, could be autoimmune, could be medication. What meds are you on? If you go the DINET website, there are at least a dozen different causes for POTS. A good internist that knows your history will be able to figure out what next. 

I'm 23 and currently I'm just on Vyvanse for the brain fog, but I've been on it before the pots even started so I don't think it is the medication. I was prescribed Midodrine, but got constant headaches and blurry vision with a sense of detachment, so I am no longer taking it. 

I was diagnosed with POTS, and I guess I have a mild form of it as I don't get low blood pressure or pass out, but my heart rate gets very high when standing. My average heart rate just from standing up is 150-160, with activity this goes into the 170-180s. Sitting down my heart rate is between 70-90. 

What would be the cause of my heart rate going so high without me having severe symptoms? My only major symptom that I complain about the most is fatigue. I am so exhausted, constantly. I wake up feeling as if I never slept. I do have occasional numbness in my extremities and cold and clammy feet, but the fatigue is what bothers me the most. I can walk almost an hour before feeling faint. I went to the doctor yesterday and she took my heart rate and was shocked that it was 157 just from standing, with normal blood pressure and that I didn't feel like I was gonna pass out. I read about a lot of people fainting and being quite more disabled than me with heart rates of 110-120, so how can I have an average heart rate of 150 but still have only "mild" symptoms? I have been unable to find a single doctor who knows anything about POTS or Dysautonomia in general.

Could it be a B12 deficiency? My B12 level is low-normal at 300

I also have a high ANA of 1:320 homogenous pattern, but tested negative for ENA

How can you tell what kind of POTS you have without laboratory tests, as no doctors are willing to perform sitting to standing catecholamine levels....

8 minutes ago, StayAtHomeMom said:

Curious, did you start taking the midodrine 3x a day right off the bat? My specialist had me wean on it. Even now I only take it as needed. I can take it up to 3x a day but only when I know when I am going to be on my feet. Did they warn you that you aren't suppose to lay down while it is in your system as well? The only side effect I ever get is the scalp tingling. It is weird but harmless. I have been taking it for about a year and a half now. 

The first day I took it I didn't feel any different. Then the 2nd day onwards I started feeling awful. I was told not to lie down on it and I haven't. Every time I've taken it I've been mostly on my feet, which has been very difficult as it makes me so out of breath and lightheaded! Its very strange. I can't find any information on Midodrine causing these kinds of side effects, but I know its the Midodrine cause I didn't take it for a day and my heart rate was actually lower off it. Midodrine has been causing a heart rate of 140 when standing, when normally mine is between 120-130.

Hey every one!

Last week I finally saw a doctor (cardiologist) who knew a little about POTS! He admitted that he doesn't know a lot and that I probably know more about the condition than him, but he was very kind and actually listened to me and said he would do everything he can to help me, including personally calling the POTS specialist himself to see if he can move me up the waiting list.

In the mean time he prescribed me 2.5 mg of Midodrine, 3 times a day. I have normal blood pressure, usually around 117/80, lowest its ever been is 105/70. On Midodrine the systolic pretty much stays the same but the diastolic increases to around 90. Even though I have normal blood pressure, I still get very dizzy and feel faint when standing. The Midodrine made me less dizzy (aka the world no longer spins), but that's about it in terms of positive effects. I've been taking it as prescribed, but noticed some very concerning side effects, not including the common scalp tingling and goosebumps. While on Midodrine my heart rate has actually been a bit higher, and I notice it more than before the medication. I can feel my heart pounding against my chest, and I am more out of breath. My vision also gets very blurry and I feel a sense of dissociation, like I'm disconnected from my environment. I get shaky, more lightheaded, and my veins in my legs and hands become HUGE. They become really blue and prominent. Never in my life have my veins been that visible, it's quite scary looking! Even my boyfriend and roommates pointed it out. When the Midodrine wears off, all these symptoms go away. 

My question is, Midodrine is a vasoconstrictor, yet it makes my veins really large and blue? Isn't large, visible veins a sign of dilation? Why would Midodrine cause this? Does my reaction towards Midodrine hint at what type of POTS I might have? 

The internalist did mention that I might have a mild form of Raynaud's, but its only really my nails that go really purple or white. My fingers and toes go more red or somewhat white. I do get tremors and occasional chest pain. I also sometimes feel like its hard to breathe, even when sitting. I have to take a really deep breath and my chest often feels heavy. How did you go about getting a diagnosis of Prinz-Metal angina? I had an electrocardiogram while laying down and it was normal. Would this have shown angina if I were to have it?

8 hours ago, CarolS said:

The horse chestnut works as a kind of herbal Midodrine. It constricts the blood vessels which helps the blood get up to the heart and head easier.  For some people, just increasing blood volume with the salt and fluids achieves this and I think that's why the doctor didn't prescribe midodrine right away. He wanted to see if my daughter's POTS would be corrected just by increasing the blood volume and then forcing down the heart rate with the Ivabradine. I could see the fluids and salt weren't enough after about a week, so added the horse chestnut in. I've only tried the specific brand and type mentioned above because it's the aescin in the horse chestnut you need and that product has a particularly high percentage of this. It's also time release, which is good. I was surprised at how well it worked, to be honest. Each person is so different, though. You could have a totally different reaction. Butcher's Broom is another, even more commonly used, herb for vasoconstriction. It didn't work as well and gave my daughter a strange kind of headache the two times she tried it. The licorice was the first thing we tried where we could see a noticeable difference. Way before the POTS diagnosis. If you can get your hands on some pure powdered root it's potentially a good thing to try in conjunction with the fluids as it helps in multiple ways. Just keep an eye on your blood pressure while taking. I'd also take in the morning rather than evening. 

I'm in the UK and I think Ivabradine was approved here some time before it was approved in the US. Not sure about Canada. Doctors aren't all necessary aware of it.

I hate sitting in the doctor's office and trying to cram my explanation of the 75 different things going wrong with my daughter, most of which the GP has no clue about, into a 10 minute appointment. My strategy now is to write a letter (they won't accept emails here) very clearly outlining the one specific thing I want help with at the time. I include research evidence and exactly why I want what I want and just get the doc to call me when he's digested what I've written. This has worked so much better than sitting in an appointment getting overly emotional.

Similar experience with GP refusing to do HR test. I told the GP I'd been measuring her heart rate and it looks like she has POTS. He was willing to just accept what I was telling him and not bother to do his own HR readings. I basically forced him to do readings because I wanted some external measurement verifying there was something wrong here. I mean, I'm not the doctor! I'm using a phone app to do measurements! After a year of going to doctors for the ME/CFS where every symptom is just something you're telling them, I was not going to allow the doc not to do his own measurements on this. Then, of course, you keep your fingers crossed this won't be the ONE day you don't have the tachycardia! Things got quite heated in that appointment, but I managed to get him to do the measurements. Thankfully (you know what I mean) her heart rate went way above the 40 increase required. 

Your doctor does sound really unsupportive and awful. I will say that you might find in the long run not seeing a cardiologist and having to wait for the specialist may be the best thing. GP wanted to send daughter to paediatric cardio first, before we got to see specialist. I was worried about this because I've read so many stories here and elsewhere of cardios who don't know about POTS and basically find nothing wrong. And then you're one step further back because your records now show a cardiologist has said you're fine. After being on a waiting list to see the cardio for ages, I eventually rang up the specialist myself and found that they would be happy to see my daughter with a referral straight from the GP, so I --surprise surprise--wrote a detailed letter and got GP to agree to the referral. Daughter was diagnosed with POTS right away and got the Ivabradine. 

Thats very interesting! I will look more into that!

Thats whats so hard about not getting doctor’s advice. I’m scared to try certain things because everyone is different and what if it does more harm than good? But when I do ask for doctor’s asvice they say “No! No one should increase their salt intake. Thats always a bad idea!” Which we know in the case of most POTs patients isn’t true. 

6 hours ago, Pistol said:

Dear @Potsies - I am absolutely shocked about that doctor that refused to treat you. That is malpractice!!!! Please do not go back to that quack! -- You are doing a really good job of treating yourself, I am impressed. I agree with what others have said - you should ask your doctor for beta blocker or ivabradine. You mentioned in your initial post that your feet go cold and blue - is it only when standing or dangling or is it all of the time? I have hyperadrenergic POTS ( too much vasoconstriction ) and my feet are blue and ice cold rather than purple or red only when standing ( as is the case with blood pooling caused by too much vasodilation ). -- I minded the fatigue the most as well. In my case my meds and weekly IV fluids were the solution. Hang in there and keep doing exactly as you are doing. I know the frustration of not having a doctor to go to for advice and having to be patient until the appointment with the specialist. I had to wait one whole year to see mine and in the mean time dealt with ( and fired ) 5 ignorant cardiologists. But once I got in with the specialist it was sooo reassuring b/c everything I told him he had heard many times before. When you do not have to feel like you have to justify every symptom it is very freeing. And he WILL have an answer, you will see. Best of luck to you!!!

I was going to file a complaint against him but later learned that his daughter had passed away just a week before, which could explain his behaviour, so I decided to just drop the complaint but find another dr!

My feet are always cold and white/purpleish , even when lying down. This happens despite the temperature, they’re cold even in the hot summer. When standing up they turn more red. With hyperadrenic pots are there any physical differences in symptoms compared to common pots? Or is the difference only noticable in higher blood pressure upon standing and norepinephrine levels?

1 hour ago, CarolS said:

My daughter doesn't have the abdominal issues, but other than that her symptoms are pretty similar to yours. She's 16. We're in the UK and managed to get referred to one of the doctors listed on the POTS UK site. Have you looked on the physicians list here to see if there's anyone close to you that you could perhaps get a referral to? We've been to see the specialist once and she was prescribed Ivabradine and slow release salt tablets (600mg each) and told to take 4 salt tabs/day plus salt food as much as possible and drink at least 2L water/day. She'd been doing the salt and water thing before this time, but it was pretty erratic. Doctor said you have to be really consistent and that the blood volume increase won't really kick in until at least a week of consistent salt and water. 

The Ivabradine is better than beta blockers if you tend to have normal/low blood pressure. It only lowers heart rate and has very minimal side effects. Doctor said to do the salt+water protocol for a week then start on a low dose of Ivabradine and work up to full dosage. In addition, she also takes 1tsp liquorice root powder dissolved in a big glass of coconut milk with 1/8tsp salt first thing in the morning. The licorice is another way to increase the blood volume. She's been taking this for quite a while and we really notice the difference when she takes a break from it. (Only good if you don't have high blood pressure, though)

Once she was on the Ivabradine things actually seemed to be a bit worse for a while. It brings down the heart rate, but with POTS the heart is pumping like crazy for a reason, so without something else to vasoconstrict and keep the blood moving up to heart and head, things were actually worse. The doctor had talked about midodrine as a possibility, but had not prescribed it. I decided to look for an herbal alternative and decided to try horse chestnut tablets. I bought the Swanson Superior Herbs Timed release Horse Chestnut 22% Aescin and she takes one in the am and one in the pm. This seemed to be the missing link and once she added this, the improvement was fantastic. She's been on this protocol for about 2 months now and she is better than she has been for a long time. She has ME, as well, but bringing down the POTS symptoms has helped overall. Less PEM, less fatigue. A lot less headache and chest pain. She's nowhere near back to normal functioning, but this is as good as she's been for a long time.

 

 

I have looked at the list of physicians and I have already been referred to the only one in my proximity. I think I'm just going to have to wait until I see him.

That's good to know about how long it will take to increase blood volume. I have only really been consistent with it for a couple of days, so I will keep going. 

I have read about ivabradine and it seems like the best option in my scenario. I'm thinking of going to a doctor and instead of telling them I have POTS and being immedietely dismissed, to just explain my symptoms and ask about specific medications and see what they say.  It's insane how rude and dismissive doctors can be when they come across an illness they don't know about. My most recent doctor told me, "No I won't refer you to a cardiologist because you seem completely healthy." I then asked him to take my pulse while standing and he refused saying he didn't want to. I told him how much I am suffering and he said, "I don't care. You're not dying so its not really my problem." Needless to say I will not be seeing him again

I'm glad to hear your daughter has found things that work for her and is slowly improving! Can I ask what the horse chestnut tablets are used for? What symptom have they helped the most with?

3 hours ago, StayAtHomeMom said:

Talk to your internist that diagnosed you. See if she would be willing to prescribe you with medications. I would start with a low dose beta blocker. If she needs convincing look up some studies. It sounds like you are doing everything right, your body just needs a little help. 

For brain fog, my Beta Blocker helped that considerably and I use caffeine to help boost it. I know that seems counter productive but caffeine from soda doesn't bother my HR. 

For fatigue, again that is caffeine. I have not found a great remedy for that. It helps to try to stay on the same sleep schedule. And I can't nap during the day or it makes it worse. I also try for 10 hours or more for sleep. 

My GI issues I used to use kefir. Since I started the keto diet back in October my GI issues have considerably lessened. I still get diarrhea about once a week sometimes every other week. But it is not like it was where it was multiple times a day, everyday. Not sure why my body responded that way. I am just glad it did. I really needed a break from that set of symptoms. 

Not sure why salt loading isn't working for. Trying looking at specific numbers you are intaking. Personally I don't worry about the salt much, I just listen to my body. When I don't feel good I crave salt. Before my diagnosis I used to dip fries in salt (like people would do with ketchup) my family thought I was nuts. But I felt better. And my tests showed my sodium numbers were fine. Even now I just add salt to as many meals as I can and not be afraid of processed stuff. 

I am surprised at how similar our symptoms are. Only differences are I have never fainted. And I have breathing issues as my major symptom. But BP ad HR are even similar ranges.

Things get better. Very slowly. I am over 3 years in since my body started malfunctioning. Next month makes 2 years since my diagnosis. I take life a lot slower now, but I get to see more scenery too.

Caffeine pills do help with the fatigue and brain fog but my HR is dangerously high with them so I only take the when really needed. Coffee for some reason completely knocks me out. I get nauseous, dizzy and get so tired I can barely keep my eyes open after a cup of coffee. 

The keto diet seems interesting. As of now I haven't altered my diet except for adding more salt. I was thinking about trying to go gluten free since I heard that helps, but it sounds so hard. Every food I love has gluten haha!

Hi everyone,

I am 23 and was recently diagnosed with POTS by an internal medicine specialist. However, she has been no help other than making the diagnosis. She basically said, "You have POTS. Doctors don't know what causes it and theres no cure or anything you can really do, sorry!" Then shooed me out the door. In another visit I had finally convinced her to refer me to a POTS specialist. I live in Canada and there are only 2 POTS specialists in the entire country, so I've been told the waiting list is over a year long and I can't afford to travel.

I have seen cardiologists, over 10 GPs, GI specialists, and have even been to the ER. Every single doctor has either never even heard of POTS or don't believe in it and instead diagnose me with anxiety, or they say I don't have POTS because I don't faint every time I stand up. Which is ridiculous, as not everyone with POTS faint, let alone every single time they stand. In the meantime I've been researching and trying to learn as much as I can about POTS on my own. 

Here are my major POTS symptoms:

- Heart rate between 130-160 upon standing. Remains high until I sit down

- Relatively normal blood pressure (around 110/70)

- What I assume is blood pooling (my legs and especially my feet are always cold, numb and red/purplish)

- My feet and hands tingle and fall asleep really easily

- GI issues which I've had on and off since I was a toddler (abdominal pain usually in the evenings, alternate between diarrhea and constipation, feeling like my bowels are full even after I go)

- Constant fatigue. I am so tired, all the time. This is probably my worst symptom. I am always mentally and physically exhausted no matter how much sleep I get

- Brain fog

- I feel lightheaded when standing and start to feel really faint after about 30-40 minutes of walking.

- Suspected EDS as I have hypermobile joints and occasional joint pain

I have fainted 3 times in the last couple of years, which doctors said was due to panic attacks even though I explained I didn't feel anxious at the time. I now believe this was due to POTS and not anxiety.

I have tried increasing my salt and water intake by drinking gatorade or mixing some salt in my water and drinking that throughout the day. I have also been having more soup. This does lower my heart rate but hasn't helped me feel physically better. I'm still just as weak and tired despite the lower heart rate. Also, when I increase my salt I pee like crazy!! I'm peeing every 10 minutes. I thought salt was supposed to help prevent that?

I am also making an appointment with my GP to get a prescription for compression socks. In the meantime I've gotten a pair off Amazon to see if they work. They're not as strong compression as medical grade ones but I find they do help me stand for a bit longer.

I have a dog which I use as my motivation to exercise, as I read thats really beneficial for POTS patients. I take her for about 2, 15-20 minute walks a day.

Despite the increased salt and water, compression socks, and the exercise, I still feel exactly the same physically. I had all my blood work done and every thing came back normal.

Do you guys have any other tips when it comes to managing POTS symptoms, especially the brain fog and fatigue? Why isn't the increased salt/water working? I feel so lost and helpless. I can't find a doctor who knows anything about this illness so I have manage everything on my own until I can see the specialist. Any tips, tricks or knowledge about POTS would be so appreciated!

Thank you