Pots can’t cope

[Amyque]

I have had pots symptoms now for 3 months, it followed a viral infection and then a cardiologist diagnosed it after a 7 day holter and an echo to rule other things out. 

Iv gone from an athletic happy young mum to a bed ridden, depressed sad soul, I have two children that depend on me (I’m 30) and I’m letting them down with this illness.

my symptoms-

heart rate that jumps to 125 just standing up and continues to rise until I sit down 

if I don’t sit down once it get past 130/140 I get deep heart pain, SEVERE breathlessness and it takes me hours to get my breath back even once sitting. 

I get chest pain all day, light headed all day, sleep apnea now (I’m slim with no other health issues) and I gasp through the night with heart rates nearing 200! 

Also if I try and push myself to stand longer my heart switches from severe tachycardia 160 plus if standing more than 5 mins  to a beat here or there and then when I sit down it’s SEVERE missed skipped slow beats!!! Like it’s going to explode/give out. 

Im so frightened, that it’s making me bed ridden which is causing severe anxiety/depression. And it’s hard to explain this to people as you look fine. 

My cardiologist sent me for a pet ct scan as he said sometime pots is due to more serious causes so I’m just waiting for the results as only had that yesterday .

 

im always breathless which is worse after eating, talking, bathing, heat and ANY movement standing etc. 

My life has done a 360 and I’m in constant fear, please tell me this gets better. 

[HCD77]

Has your cardiologist put you on any meds? 

[Pistol]

@Amyque - the symptoms you describe are familiar to me ( and probably most POTS sufferers that are not properly medicated ). I used to feel exactly like that, plus I would faint and take seizures often from it. I did not improve until I was diagnosed and treated by an autonomic specialist. If you are not currently seeing one i would highly recommend you ask to be referred to one ( see our physician tab for a listing ). Some cardiologists may be able to diagnose POTS based on the HR increases on standing but they do not know how to treat it. Most order a beta blocker and expect you to do fine - but it rarely is that easy. Finding the right treatment is highly individual and different meds work for different people, despite them sharing the same symptoms. 

Your HR ( especially along with your symptoms ) is nothing to laugh about, and you need to be treated for it. It is OK to look for an explanation by doing a PET scan - but treatment should come before finding a cause. Ask your cardiologist to treat your tachycardia, which he should with medications. If not you may need to see another physician. Cardiologists are not necessarily ( actually they rarely are ) able to deal with POTS, that is why you should see a specialist in addition to your cardiologist. Most people diagnosed with dysautonomia have to travel out of state to see their specialist, and almost all have a long waiting list for new patients, so getting a referral soon is important. 

[PotsieCrocheter]

Waiting for results can be nerve racking. You’ve provided examples of how your cardiologist is taking some forward steps to try to figure things out, that’s a positive. Hang in there and go easy on yourself. 

I’ve had that feeling of letting people down too. After spending half of my life with varying degrees of chronic illness, my family still assures me that I haven’t let them down and that I’m as important to them now as when I was perfectly healthy.

 

[merkat30]

I am also 30 two children this has been horrible I struggle so much but think my children are more caring stronger independent for it in weird way ....yes I have mama guilt daily it horrid they see in pain unwell so much it hard for them and my husband took so much from us but think also given us all stronger bond that a normal...family wouldn't get ..like laughing why mam on floor again and little one only bothered about her jelly cause it normal to them now on treatment wish could help but still tryn to find answers this site is amazing though lot of help 

[Photon]

 ivabridine may help reduce your heart rate and you may want to talk to your doctor about that.

 

[yogini]

On 6/30/2020 at 11:59 AM, Amyque said:

I have had pots symptoms now for 3 months, it followed a viral infection and then a cardiologist diagnosed it after a 7 day holter and an echo to rule other things out. 

Iv gone from an athletic happy young mum to a bed ridden, depressed sad soul, I have two children that depend on me (I’m 30) and I’m letting them down with this illness.

my symptoms-

heart rate that jumps to 125 just standing up and continues to rise until I sit down 

if I don’t sit down once it get past 130/140 I get deep heart pain, SEVERE breathlessness and it takes me hours to get my breath back even once sitting. 

I get chest pain all day, light headed all day, sleep apnea now (I’m slim with no other health issues) and I gasp through the night with heart rates nearing 200! 

Also if I try and push myself to stand longer my heart switches from severe tachycardia 160 plus if standing more than 5 mins  to a beat here or there and then when I sit down it’s SEVERE missed skipped slow beats!!! Like it’s going to explode/give out. 

Im so frightened, that it’s making me bed ridden which is causing severe anxiety/depression. And it’s hard to explain this to people as you look fine. 

My cardiologist sent me for a pet ct scan as he said sometime pots is due to more serious causes so I’m just waiting for the results as only had that yesterday .

 

im always breathless which is worse after eating, talking, bathing, heat and ANY movement standing etc. 

My life has done a 360 and I’m in constant fear, please tell me this gets better. 

Sorry you are going through this.  This sounds like a typical post-viral onset of POTS which is treatable (and from which you have a good chance to recover fully).  What is your blood pressure?  Many of us with high heart rates have been successfully treated with beta blockers.  Has your doctor considered prescribing one to you?

[RobinB]

Hi.  I'm so sorry that you have a reason to be here.  We can all empathize with how bad you are feeling.  It's very hard when this disorder turns your life upside down.  I've had this for 9 years and it is terrifying still.  I did have a period of about 3-4 years where I got a little better.  I was able to do most things I needed to do and some of what I wanted to do.  However this year I have fallen back worse than before.  I'm not saying this to scare you, but just to let you know that it can get better over time. 

As hard as it is, try your best to move a little each day.  I get symptoms within seconds of standing up so I completely understand the struggle just to make it to the bathroom.  However, if I succumb and stay down for hours on end it will most surely make it that much worse.  I try to stand up for 1 minute every 20 minutes or so.  I just stand right next to my recliner so if I need to I can quickly sit.  I do allow myself to rock from leg to leg if needed but I don't sit down until my 1 minute is up.  I allowed myself to get fully deconditioned while on this quarantine and it has made my POTS 100x worse.  I am also not medicated.  Can't take beta blockers because my resting pulse is now 45-55.  

It's good that your cardiologist is looking for a cause!  But I suggest trying to see a specialist if possible.  Cardiologists and neurologists from my experience only focus on a small part of it and tend to throw meds at you without really checking first.  I was prescribed this beta blocker via a video appointment and there was no testing done prior.  It's all very scary, you have to advocate for yourself.  Know your numbers so you can take charge of your health with the help of the doctors if needed.  Be patient because it can take a long time to get the help you need.  I find that most doctors don't understand how truly awful POTS is.  They think it's just a minor annoyance which leads to us not being taken seriously.  I often wish I could switch bodies with my doctors for even 5 minutes.  They would be begging to switch back!

 

 

[cmep37]

I am so sorry you are going through this Amyque.  I have had symptoms since my teens (I'm 41 now) but began to have severe symptoms in my early 20's after a bout of glandular fever but was not diagnosed for almost 15 years (I suggested POTS to my GP myself who had never heard of it!) .  I had a TTT to confirm the diagnosis where my HR was 172 after less than 15 minutes standing and I usually average 140 after 5 minutes standing so my numbers are similar to yours.  The important thing to remember is that if your PET scan comes back clear, POTS will not kill you, however bad you feel!  There are plenty of medications to try to lower your HR and most people find something that works for them.  Try to see an autonomic specialist or if that's not possible an electrophysiologist should understand POTS better than a standard cardiologist.  Unfortunately, I have tried every medication my EP consultant will prescribe and have not found anything to help in the long-term (I had a good 6 months with Midodrine before it elevated my BP to dangerous levels even on the smallest dose). 

As others have said, try not to become bedbound.  I so wish someone had explained to me that whilst lying down is the only time you feel OK, spending all day in bed makes you lose muscle tone and worsens symptoms.   Try to find a routine that you can stick to - one that you can manage every day, not just good days.  Don't use all your energy on good days and then spend days or weeks recovering!  I have a couple of half hour lie-downs during the day but I also do an hour's recumbent exercise and 10-15 minutes walk or recumbent cycling to stop myself becoming deconditioned.  I love my rollator - it helps me keep my balance when I am presyncopal (that feeling where you think you are going to faint but don't) and has a built in seat which allows me to sit down quickly when I feel particularly bad.  

POTS is a really difficult illness to deal with particularly because POTSies look fairly OK - I'm thinking of getting a T-shirt made with the slogan "I wish I felt as good as I look!" on it.  No-one understands how awful you feel apart from another POTS person!  This is my life though and I'm not going to get another one so I have learned to try to make the best of it. 

You probably already know this but make sure you drink at least 2 litres of fluid a day (electrolytes are better than plain water), eat as much salt as you can stand (this is standard POTS treatment but talk to your doctor first about increasing salt to your diet), wear compression tights (waist high are best, 30-40mg if you can manage them) and try to avoid getting overheated or stressed (easier said than done I know!). I was particularly symptomatic around the time of my period (my periods were heavy and reduced the amount of blood in circulation) and found that running packs of the pill together and then having an IUD coil fitted to reduce or eliminate my periods helped me.