Could it be AI?

[happymomma5]

I'm a 34 year old female trying to find some answers.  When I was in high school I began falling asleep in class daily.  I played several sports and was a straight-A student so I attributed it to not getting enough sleep (even though I felt like I was well rested).  It continued all through high school and by the time I was in college I was falling asleep anytime I sat down.  I cheered in college and by my junior year had to quit as I no longer had the stamina to get through a competition routine.  I was also in constant pain, both joints and muscles.  A year after I graduated, the exhaustion began to be accompanied by dizzy spells and blacking out so I finally went to the doctor (I try to avoid dr's at all costs :)) and was diagnosed by a cardiologist with very slight tachycardia and arrhythmia.  They suggested ablation, but instead I took the approach to try an inhaler since they also found my lungs were not functioning at full capacity.  These symptoms persisted for several years along with severe brain fog, muscle weakness, dizziness, muscle and joint pains, irritability, tremors, etc.  A few months after having my first child at 27, I decided to try the dr. again and this time they did a blood test to check my thyroid which came back ok so I ignored it for a few more years again. Fast forward to my third pregnancy, same symptoms but worsening to the point of passing out several times toward the end of the pregnancy.  I would get so weak, all of my muscles would feel numb and then I would wake up on the floor.  I was tested for narcolepsy, epilepsy, Meniere's Disease (because of the vertigo and dizziness), and Myasthenia Gravis, all which came back negative thankfully. My dr. now wants me to see an endocrinologist to check my adrenal functioning.  I am so over dr's but at the same time hate feeling so miserable, especially after passing out three times in the past two weeks and never getting back to "normal" between episodes.  When I feel this way, it's like my entire body feels numb (low BP?) and I fight to stay "here" and the next thing I know I'm on the ground surrounded by whomever happens to be around at the time.  My last episode yesterday happened on an elevator in my office and I woke up to EMT's telling me I was having a seizure.  It's definitely not epilepsy because I feel worse and worse until I finally pass out so I know it's coming on. It also is accompanied by vomiting or at least severe nausea (which is another daily norm for me). My question is could it be an adrenal gland disorder when it has gone on this long?  Do people come out of these "episodes" and return to a somewhat normal baseline with no steroids?  I do have pretty low blood sugar but again, I know that is not a diagnosis by itself and instead a symptom of something else.  Sorry for the long post but I'd love to have some feedback before I go to yet another specialist.  Thank you :)

[LowCortisol]

Sorry I misspelled the words, " idiopathic hypersomnia" which mean ps " excessive sleepiness for no known reason"

Good luck

[happymomma5]

Lol, that is the name.  I told my husband it just means I'm a sleepy idiot :)  Thanks for all of the advice, I really appreciate it!!

[LowCortisol]

Your sleepiness must have been diagnosed as idiopathic hypersonic and Aderall is one drug known to work. If that ever doesn't work well try modafinil, which is what I am on, frankly the best diagnostician for that is a sleep doctor who will run a MLST ( sleep study) and not a neurologist.

Your symptoms as a whole are not what I experienced when I was diagnosed with adrenal insufficiency. As to your nausea, dizziness and vision problems I have one thing to say. Ask for a brain MRI.

I had a pituitary tumor which in many cases causes all of these problems. I got my tumor removed.

[happymomma5]

Thanks for the response :)  I've been told I have ADD because of the confusion/brain fog as well as Idiopathic something or another about falling asleep too easily (diagnosed by a neurologist).  I was offered Aderall for both of those which did help my alertness but definitely not the other symptoms (dizziness, nausea, vomiting, muscle pains, shortness of breath, etc.) I took it for about 4 months and went off of it.  The other really weird thing is that I've had three kids and each time I drop weight like it's nothing.  I eat a lot of fruits/veggies/whole grains but can also eat three or four pieces of pizza, ice cream, cheeseburgers/fries, etc and not gain a pound. The only thing that keeps the nausea away is eating (it was the same with pregnancy morning sickness, I never stopped eating lol) and I never gain weight, I stay right around 120.  

For so many years I've just dealt with not feeling 100% but I've definitely gotten a little more serious about finding answers in the last couple of years. I've began to have a lot of difficulty driving as my eyes cannot focus well and it's like I almost can't see a full field of vision at times and of course it's scary to drive when I pass out so frequently.  I also feel like I'm not enjoying my kids as much as I could when I am so exhausted that I just want to go to bed after work!  I just don't know if someone can live with AI symptoms for 15+ years without going into full crisis?  Whatever is going on with me has been progressively getting worse for almost 20 years which is what is making me doubt it is AI.  I'm really, truly not looking for a big name diagnosis or anything at all, I just want to feel better! :)

[LowCortisol]

Boy oh boy! Like most patients you believe what clearly inexperienced  doctors are telling you. You say "blood test to check my thyroid which came back ok so I ignored it for a few more years again". You should understand that by 'ok' all a doctor is saying is that your bloodwork result is within the normal range.

A truly great doctor will look at that result IN CONJUCTION with your medical history and quite possibly arrive at a different conclusion.

You say you were checked for narcolepsy but that was excluded. Were you given any medications to treat your sleepiness?

I agree with the recommendation to see an endocrinologist.
Given your numbness, have you seen a neurlogist?

I had very low cortisol for 18 months, hence my name, an was on hydrocortisone tablets. I do not think you can "feel better" without the issue being fully investigated and if need be, placed on similar tablets.