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Sleep Neuro Said Pots Is "innocuous"!

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Unbelievable!

When challenged she said it wasn't like a dangerous heart rhythm and I wouldn't drop dead with it.

I was referred to her from the pots doc and it has taken 4 months to get the appointment to check for sleep apnea.

I assured her that using a wheelchair for all but very short journeys and never an hour passing when i can forget about it because of continuos symptoms was life changing.

The understanding of pots seems to be limited to the diagnostic criteria of 120bpm on standing without any comprehension of the severity of the disabling symptoms.

If all i suffered was tachycardia I would be happy - I feel so ill so much of the time and no one seems to get this. It is this that causes the problem.

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I know what you mean Emma. Not just a heart rate/blood pressure thing at all. It *is* great to know we are not in mortal danger from this illness, and I think some docs are just trying to reassure us. The feeling sick 100% of the time for years on end (just a matter of degree at any given time) is rubbish though, and very life altering!

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First off, we on this forum "get this". We understand. Also, believe it or not, there are doctors who get this. I have a neurologist who gets this. My mast cell doctor "gets this". I'm not sure if they understand the every day accommodations that I need to make to function, because they are not me. But, for the most part, they realize how debilitating POTS can be.

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It's funny. For most of my adult life, my vital signs were around 90/60 and pulse of about 100, sitting, so no telling what my pulse was up and walking around. I felt fine and could do anything I wanted. Fastforward to POTS, vital signs look more "normal" at 112/72 and pulse of 78, sitting. So, vital signs definitely do not tell the story on how someone feels. The doctors apparently don't understand that.

Now I wonder, why did I feel good early on with almost bad vital signs? I didn't feel lightheaded with the low blood pressure, and I didn't feel like my heart was racing when it was at 100 or higher.

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Emma,

You should have asked her if she would say it is innocuous to have to perform aerobic exercise every moment of her day from gettting out of bed to getting back into bed, even while she spoke to her patients and dictated her notes, went to the bathroom and did her grocery shopping, showered and cooked dinner for her family. No, she doesn't get it and I am sorry that she was condescending. POTS is life changing and our hearts weren't designed to work this hard all the time (physically or emotionally).

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Emma,

I am so sorry you had to wait 4 months for this appointment, and all you got was a huge disappointment! Funny how a sleep specialist would be so cavalier. Sleep is a basic need and many healthy people with sleep apnea have had life altering experiences due to apnea alone. No one really understands all that dysautonomia can do to a body, especially when you add the potential of sleep apnea in the mix. I myself have central and obstructive sleep apnea, and with my autonomic neuropathy have stopped breathing numerous while in deep sleep. My HR has also dropped to 27 on a cardiac event monitor while sleeping, just before I awoke choking and gasping for air. It wasn't until I finally had some postive tests, (ones that are so shocking, no one believed how severe my episodes actually are) that I got some medical "respect". Now, we know I go into an atypical form of anaphylaxis on a regular basis and that misbehaving mast cells are responsible for many of my seemingly unrelated conditions. I guess what I am trying to say, is how can she possibly know how severe your POTS is, especially without testing to see if you have have obstructive or central apnea or some other sleep disorder making your POTS even more unstable? She is assuming you have a less severe form of POTS, which is likely all that she is familiar with. You can choose to try to educate her or drop her once she can no longer help you.

Best wishes,

Lyn

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Guest Alex

Emma,

I'm so sorry for the way your latest appointment went.

I know first hand what it means to put all your hopes into a doctor only to be blown off and told your condition is "innocuous".

If only these so called doctors would experience what we do on a daily basis for at least 24 hours... they might have a different attitude towards their patients.

We can only try to explain to the doctors what a day living with POTS feels like. Unfortunately, it falls on deaf ears too many times. They don't see our condition as life threatening, they don't know what to do for us (it's not like we need a band-aid or an asprin), most doctors don't even have the decency to admit they have no knowledge about the condition, they are not willing to learn about it, so we get to go back home with a pat on the shoulder and the reassurance that our condition is "innocuous"!

I guess we all have our doctors stories, but I know that when the doctors don't get it, you guys on this forum do, and for that I am so, very grateful.

Emma, if I were you I wouldn't stop here, I'd go looking for another doctor. I know that sometimes the choices are limited, but maybe you can find someone who is willing to learn about POTS and help you. Meanwhile, you can count on our support here on the forum.

Hugs,

Alex

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Goodness - I am so touched by everyones care.

It's been such a struggle in the UK getting anything like the tests and understanding that a lot of others seem to get - not always I know - but neuropathy, mast cell, EDS, cervical stenosis etc etc etc have never even been mentioned here.

But I am not going to moan anymore.

This doc is going to give me a sleep test and then I will educate her.

I was interviewed for national tv today for my design company and I am so proud of what I have achieved despite POTS.

But doctors think if you work you are not ill. I think this was her attitude not that she knew anything about it or how much support I get from the team or how many times I have to leave in the middle of meetings etc or how many times I have had to phone my partner and say - sorry, I am in hospital again.

Thanks again - I will definitely have something to say next time.

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Emma,

No one should be treated with such disrespect having any illness, until they have walked a mile in your shoes, or rolled two miles in your wheelchair. You know that 30% of us have sleep apnea, so that's no small number. Sleep apnea can stop your breathing in the middle of the night. Think of all the infants with sudden infant death syndrome. According to my sleep specialist, there is no such thing as "a little" apnea; you either have it, or you don't. No one should be this cavalier about such a serious condition.

It's amazing the difference it has made in my life to have a Cpap machine for breathing at night. It was truly a God send to have a diagnosis, and get treatment. I hope you don't have it, but if you do, that you will be able to receive treatment!! You will truly sleep like a baby! :) You go girl. Glad to hear of your success with your design company, as well!!

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Ignorance from your doctor is more upsetting than from just anyone. Sorry to hear. Usually tends to make me angry. Just wish they had to go through a week of what you have to live with.

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I have a friend who is a cardioloigist who told me that unless someone is in danger of dying, dr's don't worry too much about their patients. But to actually say that to a patient in a wheelchair no less, shows incredible insensitivity. I wonder a dr would say to someone who is blind or deaf that their condition is innocuous because it isn't deadly...or a sinus infection, not deadly, but still needs to be treated, right? I've run into many of these types of drs and is not worth wasting your energytrying to convince them otherwise. It might be worth waiting to find someone else more caring.

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Emma,

I think the medical professional's attitude toward POTS is the most frustrating part of this condition, at least for me.

If its so innocous why cant 25% of patients work in any capacity? Why did the yellow wiggle have to resign?

So the yellow Wiggle had to resign because of POTS?

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I have autoimmune POTS (autonomic nueropathy too), EDS and a few other illnesses. They all different symptoms that seem to relate to everything except one. So I just keep told that they don't know to treat me. My neuro called me last week and told me he could not see me anymore because of liability because he has no other ideas- and just because they found some kind of curve in my neck that they think I was born with (or result of a birth injury- forceps) and a large pool of still fluid just putting pressure on my brain. I had an MRI in 2007 of my neck and it showed the reverse curve and the fluid but now 5 years later it has more than doubled.

I think this could be making my POTS worse possibly, headaches, with EDS etc, but they said NO... they don't treat curves and it is fine. So I can call him for my meds but that is it.. he won't see me in office. Great.

My point which as usual I lost track of, if that there are so many symptoms it is hard to put the puzzle together. All kinds of POTS is lumped into one category is an issue I think as well. Someday maybe....

Jen

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Jen, have you looked into Dr. Driscol's theory of the fluid and using Diomox to aleviate the fluid? Maybe call her - she does consults. Maybe, you can get some answers that way.

Issie

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Thanks Issie! I did download her book and have read most of it and it really seems to be me to a "T" But of course, I can't find anyone around that will even LISTEN to me. I have had 5 MRIs of the neck for whatever reason in 5 years and it is on every report getting worse every time... more fluid and more of a curve. When I questioned this... Oh, it isn't a big deal. Maybe I will email/call her. Did not know that was an option. You should be my neck... the gap between by C1 and C2 is just this gaping hole. And I have never had back pain but it is only when people get a severe form I guess when the pressure is on the ANS that it escalates in exactly the manner mine has. THAT is the first explanation I have got to make sense.... so I may as well pursue it!

J

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Jen, I hope you can get some answers. I think of you often and hope that someone is trying to help you. It's sad that you are so sick and it doesn't sound like you are getting answers. Hopefully, she will be able to lead you to someone who can help.

Issie

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I have autoimmune POTS (autonomic nueropathy too), EDS and a few other illnesses. They all different symptoms that seem to relate to everything except one. So I just keep told that they don't know to treat me. My neuro called me last week and told me he could not see me anymore because of liability because he has no other ideas- and just because they found some kind of curve in my neck that they think I was born with (or result of a birth injury- forceps) and a large pool of still fluid just putting pressure on my brain. I had an MRI in 2007 of my neck and it showed the reverse curve and the fluid but now 5 years later it has more than doubled.

I think this could be making my POTS worse possibly, headaches, with EDS etc, but they said NO... they don't treat curves and it is fine. So I can call him for my meds but that is it.. he won't see me in office. Great.

My point which as usual I lost track of, if that there are so many symptoms it is hard to put the puzzle together. All kinds of POTS is lumped into one category is an issue I think as well. Someday maybe....

Jen

Jen,

I just read something about Marfan's (which is also a connective tissue disorder) causing Dural Ectasia. It is usually in the sacral or lumbar region, but can also less frequently happen further up the spine. It is exactly what you are describing in this post. The dura, the out most three layers of tissues are around the brain, cerebellum and spinal cord region. It is considered a connective tissue, and can cause a sac collecting fluid in excess, because of the lack of elasticity, and when you have a curvature, it is more likely to settle there. I have kyphosis, high palate, overcrowding of teeth (Had 8 removed), some hyperextension of joints, mitral valve prolapse, long limbs, etc., which are all markers of Marfans, so even though I don't have EDS that I know of, there are other connective tissue disorders that can cause these problems. I would find another neurologist that specializes more in dealing with these genetic conditions. You could even go to a geneticist, too, to find an answer. Issie has a great idea with the diamox. That could alleviate fluid build up, or a spinal tap could also do the same, quicker, but of course that is more invasive. Kim

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an AHI under 5 is considered so 'little' in apnea terms they don't prescribe a machine for it. I have mixed sleep apnea (primarily central and hypopnea with the occassional obstructive), unlike obstructive with my centrals and hypopneas there no struggle whatsoever and during centrals I can look quite dead, especially during an 80-90 second one, lucky those I'm having at present are only under 30 secs - yay... and I have mine during the day as well but now managed - phew. But the hypoxia of central apnea, hypopnea, bradypnea makes me feel as if I've smoked a packet of cigarettes... I feel icky and oxygen depleted. Having a great run the last month or so though - it was really hard to sustain hope when it was so full on for so long... I've had daytime central apneas/hypopnea/bradypnea since 2 yrs old, just it suddenly flared a few years ago then really ferocious following chemo. Wishing you all well in your journies.

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I had a sleep study done 7 years ago and it was absolutely hopeless. The sleep centre was only interested in sleep apnoea and narcolepsy, the sleep lab technicians hadn't even heard of circadian rhythm disorders, and the specialist was utterly uninterested in my results (showing circadian rhythm disorders, insufficient deep sleep, and god knows what else) as I didn't have sleep apboea or narcolepsy. Don't be surprised if yours is similar. What time do you usually go to bed and wake up? They will expect you to be asleep by 11am and will force you out of bed at 7am, so if your sleep pattern is way off that, it may be worth thinking about. They also refused to let me lie down during the day when I had my sleep study, so between that, the sleep deprivation (my sleep pattern was way off back then), the food deprivation (the NHS does not like feeding vegans) and the general exhaustion and sensory overload, I ended up collapsing on the floor. Whereupon the nurses stepped over me instead of calling a doctor. I don't think that sleep medicine is a good area in the UK, at least not if you have something other than, you guessed it, sleep apnoea or narcolepsy.

STARS are worth talking to if you want advice on how to proceed next. They may have a recommendation for another doctor.

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Goodness - I am so touched by everyones care.

It's been such a struggle in the UK getting anything like the tests and understanding that a lot of others seem to get - not always I know - but neuropathy, mast cell, EDS, cervical stenosis etc etc etc have never even been mentioned here.

But I am not going to moan anymore.

This doc is going to give me a sleep test and then I will educate her.

I was interviewed for national tv today for my design company and I am so proud of what I have achieved despite POTS.

But doctors think if you work you are not ill. I think this was her attitude not that she knew anything about it or how much support I get from the team or how many times I have to leave in the middle of meetings etc or how many times I have had to phone my partner and say - sorry, I am in hospital again.

Thanks again - I will definitely have something to say next time.

Hi Emma, just letting you know I have EDS with O.H/POTS and autonomic neuropathy (apparently EDS related then worsened following chemo) and central apnea... no mast cell but do have primary immune deficiencies to juggle... thought to tell you so you know you're not alone with such chaos.

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Unfortunately drs dont seem to join the dots....the limitations of a scientific mind!!

They look on in surprise at the cardiac monitors and ttt results, at a hr running at 175+ and bps in our boots BUT dnt make the association between those numbers and the contsant drain that has on the body!

When you complain of chest pain or nausea or severe headaches or the many many more symptoms we get from ans dysfunction out comes all those stoopid questions as they try to find out why!

I sometimes wonder do they everwalk away n go "DUH that was a stoopid question to ask she has a headache/weak/vomiting cos her hr is runnin at 120 n her bp just hit her boots!

Patience is a virtue n us potsies seem to have to have alot of it!!!

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I'll share my own horror story. My sister is a nurse who's in charge of the complete employee healthcare of a major hospital.

Her comments about me PUBLICALLY IN FRONT OF FAMILY MEMBERS are that my "aches and pains" are just normal

for a 50 year old man.

Keep in mind i used to be a complete athlete, playing tennis tournaments in 95 degree weather, and playing most every other sport. My "vital signs" are almost elite, a very low heartbeat, and perfect blood pressure usually.

And yet as well all know here, people can be ********. Excuse my language, but nobody knows what youre going through, and the statistics dont tell your story.

We all know what its like trying to function, trying to breathe, trying to walk up a flight of stairs, trying to work, trying to

endure the summer heat, trying to resist the urge to go to the ER when our heart is beating through our chest wall.

At some point I stopped caring what other people thought, including family. My own wife is on record denying that Im as sick

as I say. And yet, for 50 years I was healthy as a horse and know my body and exactly what it can do.

DA put me on notice that i was no longer in charge of my life,---my health was.

I narrowed down my list of so called friends, and i literally laugh off doctors who have no clue. After all, they've

never gone down this path and if they had, it would shut them up so fast they'd be embarassed to be called a

health professional.

Trust your own instincts, and forget everyone else who gets in your way. Get rid of that doctor. He's a fool.

If people dont believe you then do you really need them in your life?

Edited by corina

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