Should I pursue a diagnosis? (probably POTS and hEDS)

[mom23boyz]

How helpful is having a diagnosis? Especially for someone with "mild" or "not-too-debilitating" POTS and hEDS?

I ran across a mention of POTS a few years ago and had never heard about it - as someone in the medical profession it peaked my interest and I read a brief summary, filed it away as "interesting", and moved on. Later I came across some information about hypermobility and read up on it in a little more detail. For that I said, "that sounds familiar but I'm not debilitated so I'm not going to worry about it."

This past weekend I ran across another article on POTS and this time I was like, "Wait a minute! That's me!" I didn't realize that all these weird physical quirks I had actually added up to something. The more I read about it the more I'm convinced that's what I've had probably most of my life. Once I read about the connection with hypermobility I was even more convinced.

Here's my POTS-like symptoms (my life?)

Dizziness with standing up from sitting or lying down- almost blacking out. I've never actually completely lost consciousness and fallen but I get dizzy start to black out most of the time. I compensate by standing slowly, leaning on something, deep breathing - it's worse if I lift my arms while coming to a standing position. Bending over and then standing can have the same effect.

Intolerance for standing or sitting - walking is fine but sitting up straight with my feet down or standing still gets very uncomfortable. I don't get dizzy, I just feel weird and heavy. I compensate by squatting, pulling my legs up when sitting, leaning on something while standing, standing like a flamingo, constantly shifting my weight or fidgeting

Low energy - I get tired easily and need lots of sleep (when I explained to my husband how much I fidget and constantly tense and relax muscles he laughed and said, "no wonder you're so tired by the end of the day!")

Exercise intolerance, especially aerobics

Mild "anxiety" attacks - kind of feels like my fight or flight system kicks in unnecessarily 

Cold intolerance - not severe but enough to go out of my way to compensate - extra clothes, hot showers (but not for too long), hot drinks. I am generally not heat intolerant.

I think there are some other things but that's what's coming to me. I tried checking my heart rate manually and while it did jump with standing I'm not sure how much. I'll try again when I have a monitor available.*

*I'm 5 1/2 months pregnant right now with my third. My dizziness has improved with this and my second pregnancies (worse with my first). Everything else has gotten worse and I'm somewhat heat intolerant when pregnant. 

I think I've have most of my symptoms for most of my life, at least since puberty. I think they've gotten some worse during adulthood but nothing super noticeable.

Hypermobility - I can do almost all of the flexibility things for hypermobility but definitely not marfan or something more serious. My skin is soft, I have mild pectus excavatum but a normal heart based on an echocardiogram. I have chronic but not debilitating back/lumbar/hip pain. As a kid my knees would dislocate fairly easily but this happens rarely as an adult. 

So when I read other peoples' stories of being completely debilitated I say "That's not me!" but I also have realized how many little things I do to compensate for the fatigue, pain, dizziness, etc. that I thought were just "me being me." 

My dilemma is this: how hard should I work for a diagnosis? We're in a financially tight spot right now and pursuing a diagnosis would mean out of pocket medical costs. I'm not debilitated enough at this point to want to pursue pharmacological intervention. However I don't want to ignore risks or truly beneficial help just because of money. 

Any thoughts on 1) how much getting a diagnosis helped even though you were fairly functional with your POTS? 2) Are there risks I'm taking with my health or my baby's health by not being followed by a physician for this? 

I realize people can't give specific medical advice for my specific case but personal experiences would be helpful. BTW my first two pregnancies were mostly uneventful, non medicated, vaginal births. I had some tachycardia with the first but no real problems. Both were fast deliveries at term. Both were in a hospital but were approached with a more natural-birth approach - midwife, no continual monitoring, food during labor, etc.

Thank you for any input.

 

 

 

 

 

[Pistol]

Hi  there - first of all I would like to tell you that in my case a diagnosis was very important because I was unable to work ( RN ) due to my symptoms. I actually saw several specialists before I was diagnosed properly. HOWEVER - after diagnosis I realized that I had dysautonomia all of my life, with very obvious symptoms, but no one knew about it at that time. ( I am no spring chicken ). Similar to what you are going through, the "AHA" things. Based on my own experiences and hearing from other people with POTS ( or other dysautonomias ) I think that our bodies are capable of compensating for the causes of ANS dysfunction, but there are times when the dysfunctional symptoms can be triggered. Pregnancy is one of them. I have found that it is very important for the medical community to be aware of a POTS diagnosis because it automatically puts you at risk for certain unwanted medical complications when triggered, such as tachycardia, syncope, prolonged recovery periods etc. So - in my own personal opinion I feel that it is essential to be evaluated for dysautonomia because it will alert doctors of potential problems. But it is possible ( many people do ) to live with POTS and not have significant disability. --- I hope this helps. Best wishes!!!!   

[mom23boyz]

Thanks for your reply! We're in the middle of a job search for my husband that may involve moving 600 miles - in the middle of my pregnancy  that's how we roll. So I'm not sure where to even look for a practitioner. In the meantime, time marches on with my pregnancy and I don't want to get kicked out of my midwife practice for a maybe. Not so much a maybe diagnosis - I'm pretty confident I'll get the diagnosis - but maybe complications. However my current midwife group only does home or birthing center births. With my last two (one overseas and one in a different state) I had midwife-like care but in a hospital setting so if something had come up it could have been quickly addressed. With the way the last two went I could have had home births (except I had a mild cervical tear with my first....) but there's always the maybe.... My next appointment is in a couple weeks. Hopefully we'll have the job situation a little more settled so I'll know where to start looking for a POTS practitioner. And I can have the conversation with my midwives. 

[Pistol]

Hi - with all of that going on maybe the best thing is to just concentrate on the upcoming birth. Have the baby how it is comfortable for you and then - if you continue with POTS symptoms after that - pursue dysautonomia diagnosis after that? Just a thought. 

[yogini]

There is no reason to work hard for a diagnosis.  I agree I'd get tested after the birth and once things settle down.  With no time pressure you will figure it out.

[mom23boyz]

Thank you! I spoke to my chiropractor (who specializes in prenatal care) about both POTS and EDS HT and she was familiar with both. Her opinion was if my symptoms were stable or even improved during pregnancy then not to worry about it until after the baby is born. She said if I have a flare up or things get dangerous then my midwife group would be quick to refer me out of their practice and to an OB that can manage POTS problems. 

I've been more nervous about getting stuck with an over-eager OB and monitoring/care I didn't need/want than I have been about something actually going wrong but I wanted to get some thoughts from people with more experience. Thank you for your opinions. I'm sure I'll be back as I figure all this out!