Dysautonomia: Making Life Crazy One Day @ A Time

I don’t generally bring up my dysautonomia on here, but it’s something I struggle with – on some scale, at least – nearly every day. When the weather gets on the warm side, especially, my autonomic nervous systemic really begins to bug out and makes life a really hectic roller coaster. So, that begs to question then just what drug this topic out from the dusty recesses of my mind (and from the last time this blog was updated – my rather busy and distracted mind at that).

Jeanne over at Chronic Healing has been doing an excellent series of posts about Postural Orthostatic Tachycardia Syndrome (POTS), a form of the broader (or as my former Endocrinologist loving referred to it “the umbrella”) termed Dysautonomia. Dysautonomia is really just a simple way of saying your autonomic nervous system is malfunctioning. There are various forms, but the general underlining symptoms tend to be the same.

  • They tend to be very thirsty (why my Diabetes Insipidus was over looked for 3 yrs)
  • Very tired
  • Prone to dizziness and vertigo
  • They will have episodes of panic with no psychological reason
  • They can suffer from a rapid or a slow heart and can alternate between the two rapidly
  • They can experience syncope

Let me assure you that these symptoms, when experienced for the first time, are extremely frightening. When people tell you it’s all in your head, this only compounds the problem.

But let me begin this post with how I learned my life would be lived one crazy day at a time. I was 15, in high school, in top physical condition. I was in the Air Force R.O.T.C. I ran two miles twice a week; did 1oo push-ups and 100 sit-ups a day. We marched a mile once a week on top of that! Then one day, one frightening day, I couldn’t make my heart stop beating. I was in Biology, just sitting there. We were hearing lecture and my heart started racing. Then I couldn’t breathe. When I stood up, I got dizzy and the room went white. Then moments later, I woke up in a pile of sweat. I had passed out.

I went home, but my parents didn’t make the situation easier. They said it was “my nerves.” They said I had always been a nervous child. I had passed out before. I could remember fainting a few times in Middle School but it was always in Physical Education – during football, or while running laps. The nurse said I was over heated, exhausted, or hungry. I would cool off, get a snack, go back to class and be fine. This felt… different. But my parents didn’t listen. The next day I went back to school even though I felt like crap. A few days later I saw my doctor so I could be cleared for R.O.T.C. He listened to my chest, then he listened to my account of what happened. My dad told him I did this sort of thing all the time. Then the doctor listened some more – to me and my chest. Then I remember his words – “I think we need to send her to a Cardiologist and get that mitral valve checked out.”

What mitral valve? I knew what a mitral valve was. I had just spent the last 5 years of my life wanting to be a doctor when I grew up and swearing I was going to go to Harvard. I read medical text books and journals, devoured them. But why was mine needing “checked out”? That’s when he told me I was born with mitral valve prolapse heart murmur. It was on my chart. My dad never bothered to tell me about it. He had even forgotten!

I was subjected to prodding and needle sticks and all sorts of fun and missed school. They did a Tilt Table test and it revealed the culprit – Mitral Valve Prolapse Dysautonomia. I tried medicine, but it was vile and I couldn’t tolerate it. It made me pass out more! Eventually, they prescribed the following regime and it worked out great. The doctor told me to drink 2 cups of strong coffee in the morning upon waking up – no more, no less. Then no more caffeine and drink plenty of water. Once I got on that regime, I was fine. The strong dose of caffeine – something dysautonomians are usually told to avoid – acted as a jump start to my heart that would go slow in the morning and cause me to drop when shortly after waking. This jolt helped me get through most days.

I was just dandy for a very long time. I told dentists I had MVP and was pre-medicated before any treatment, something we don’t have to do anymore! I told every doctor I had an MVP, but eventually I forgot to mention dysautonomia because I forgot I had it. I forgot because it didn’t bother me. I didn’t have panic; I didn’t have fainting spells. I was… normal. I drunk my coffee and water because of my heart murmur. That’s all I remembered.

Then when I got pregnant with my son, I was shopping at Best Buy with my husband and his family. It was such a normal day and I felt great. I had the big belly (about 7 months) and was eager to see him into the world, and then it happened – I dropped right there in the middle of the computer section. Everything went white and the next thing I know there is my husband and father-in-law standing over me, helping me off the floor. I don’t think anything of it because pregnant women faint all the time, right? My mother-in-law said she passed out from the heat all the time, but it’s October. My doctor isn’t concerned, so I don’t worry. He says to take it easy, I’m probably just pushing myself, but that’s when things begin to go down hill. A week later I develop the “nerve itch.” It began as a dry skin type of itch that ordinary over-the-counter cream wouldn’t touch. The doctor prescribed benadryl and then something stronger. Still the itch wouldn’t go away. I was scratching myself raw and sores were presenting. I looked like I had scabies, but the infectious disease doctor couldn’t find any disease – lice, scabies, ANYTHING. He told me doctor it was PUPPS, or pruritic urticarial papules and plaques of pregnancy. PUPPS is an intensely itchy rash that only 1% of women get during their third trimester of pregnancy and doctors don’t know what causes it, they only have theories. It was so bad, I didn’t want to have any more kids. The prospect of suffering through this again, would have made me want to kill myself. It was that bad. I was put in the hospital, pumped full of steriods, and the rash dulled in appearance but not in itching intensity. I was in agony and my nervous system was taking a toll on me. I was dizzy but this was said to be from the stress.

Then when I got pregnant with my daughter, all hell did break loose. Doctors warned me not to get pregnant again, but did I listen to them? Ha. At 12 weeks, I began passing out. I couldn’t get out of bed in the morning without dropping to my knees. My heart rate dropped into my toes then shot into my throat in the matter of seconds! I felt sick and panicky for no reason. Slowly it occured to me, I had felt like this before. When I was 15. I told my OB but she was all “pregnant women pass out… blah blah blah.” But thankfully her partner listened. He sent me for a cardiology consult to be safe. I was right, it was MVP again. I had to endure an entire pregnancy wearing compression stockings, and it was awful. I had to drink a certain amount of water and was told to maintain a high sodium diet during my pregnancy to keep my blood pressure up. I later learned my cardiologist advised my OB that I should have had a C-Section around 34 weeks to insure my safety during birth, but this was disregarded. My baby was barely caught by my doctor – I didn’t even push, she just shot out of me like a canon ball. My labor was very stressful on my body! I ended up with these crazy migraines, thyroid problems, and diabetes insipidus.

Then last summer I missed a whole summer of work because of dysautonomia. It got so severe that I couldn’t even stand at times. I would pass right out, without any notice. And a new thing began to happen, I would get episodes where I would stare off into space and just blank out. When I came to I would remember it. I would get upset and shake, this got easier with time. I haven’t had one of these in a very long time, thank goodness. I hope I never have one again. They are very scary. But the smoke smell came during that summer, as well. I began smelling a phantom smoke smell last April that no one else could smell. It would come on randomly, and at times, very strongly. Sometimes it lingers off and on all day. Sometimes it’s just fleeting moments. Sometimes I won’t smell it for weeks, and then it’s there for days on end. I use to know these as warnings that I was going to blanking out soon, once I realized there was a correlation. But now I get it and nothing follows!

I deal with the vertigo and the heart beat changes on a daily basis. I have for a long time. Once you become accustomed to this conditioned, you learn the best way for you to control it. You learn what you can and cannot do – how far you can push yourself. Yesterday, I was supposed to go hiking with my sister. My sister got sick. This was a God send. I went to a movie (by myself, so peaceful) and just going from my car to the movie theater and back in the sweltering heat was enough to do my system in. My heart was racing, my body was swerving. In that moment, I realized I was mad if I thought I could have handled 5 miles of rugged trails in that heat. Sometimes, I over estimate my own limitations. And then sometimes, I just want to forget I have limitations.


16 responses to “Dysautonomia: Making Life Crazy One Day @ A Time

  1. Endochick,

    With all of the different topics I blog about, it was a long time before I blogged about multiple chemical sensitivity. MCS affects me every single day. I think that has “desensitized” me (forgive the pun) a bit and when I finally did write about MCS, I found myself wondering why I hadn’t done so sooner.

    It sounds like dysautonomia maybe similar for you… in the aspect that it affects you daily but you haven’t written an entire blog post about it before. You had mentioned dysautonomia to me but I didn’t realize until very recently that you have been struggling with it since you were a teen!!

    Sometimes when one is affected by so very many conditions, it is hard to decide which ones to focus on when writing a blog. At least it is for me.

    What is really striking to me is how many women I know who have both endometriosis AND some form of dysautonomia. I have been active in endometriosis support groups since 1992 and thought I had a pretty good handle on what the potential co-existing conditions to endo could be. However, the last few weeks online I have been absolutely bombarded with info from women with dysautonomia.

    Interestingly, many of these dysautonomia patients also have endometriosis. I’m no scientist or epidemiologist but it sure appears to me that endometriosis and dysautonomia look like potential co-existing conditions.

    Thank you for the linkback to my dysautonomia series. I have been amazed at the response it has gotten. There must be many people experiencing such symptoms if blog traffic is any indicator. It really is remarkable.

    I agree with you that the symptoms of dysautonomia can be frightening. While the symptoms vary a bit from one form of dysautonomia to another, the basic issue of fainting/feeling faint is one that anyone who has ever fainted can relate to. Obviously no one wants to lose consciousness.

    I’m sorry that your parents didn’t understand what was happening to you when your MVPD started in your teen years. That must have been frustrating for you. They probably just had no idea of what it could be.

    I didn’t realize you had gotten a tilt table test all those years ago. I’m sorry the medicine they gave you made you sick. 😦 I’m glad the coffee method (2 cups… no more, no less) helped you. As you and I discussed previously, my PCP and cardiologist both emphasized for me not to have caffeine. (I know you mentioned in your post that this is what doctors usually tell dysautonomia patients).

    I too used to pre-medicate with antibiotics for the dentist (for mitral valve prolapse) before they changed the criteria for it. I too was told I have a heart murmur. In my case, the MVP and murmur “come and go”. Sometimes doctors hear them and sometimes not. It’s strange.

    I am so sorry you had to deal with that rash. I had a rash that sounds very similar only it occurred when I was not pregnant. So it was not PUPPS. I went to the dermatologist 9 times in 2 months. I had scratched so hard during the night while asleep that I had bad bruises all over my legs. I took to wearing socks to bed over my hands so that my fingernails wouldn’t cause more bruises. The itching was so intense that I truly felt like I was losing my mind. I had already been patch tested years before but they patch tested me again to see if I had any new allergies. Sure enough, I did have new allergies… but none of them explained what was happening.

    They thought mine looked like scabies too. I was NOT happy about the idea of using the prescription cream to treat scabies. After all, it a pesticide! This is dangerous to any human… but with my MCS I really particularly nervous about using it. The dermatologist was really pushing for it though. So I did the heinous prescription cream treatment for scabies. It did nothing to help the itching because I did not have scabies! 😦

    They never did figure it out. After 9 dermatologist appointments over 2 months, it finally subsided on its own. When you referenced how desperate the itching made you feel, I could totally relate. I doubt if anyone who hasn’t had itching like that can imagine just how very bad it can get. In my case, the skin on my entire body was affected. The intense itching triggered insomnia and once I finally fell asleep I would often be woken up by the itching/pain a short time later. It affected everything I did 24 hours a day. It was absolutely awful and I wouldn’t wish it on my worst enemy.

    It happened it the summertime (like so many of my mystery issues tend to do) and I came to the conclusion that chlorine wasn’t doing me any favors. Whether chlorine triggered it, I still don’t know. All I know is that several summers later I have not been in any chlorinated pools. We use a chlorine alternative in the inflatable pool we got 2 years ago. So after a few summers without any pool time, I can now use our home pool without any chlorine worries. I have not had any recurrence of that kind of all-body itching. I was on very strong topical steroid creams back then and they did little or nothing for the itch. It was awful!

    I’m so sorry you were so sick during your second pregnancy! That must have been really hard. I’m sorry your labor was so tough on your body. 😦

    Regarding the times where you had episodes of staring off into space and “blanking out”, did your doctors ever explain that? I know that you and I have talked offline about my husband’s history of mini-seizures. I was just curious. I know you have blogged about the smoke smell you get. That must be really strange.

    I often think one of the trickiest parts of being chronically ill, regardless of the condition(s), is finding that balance… knowing the limits, figuring out how far to push and when, knowing when to stop. It’s very challenging to strike this balance, isn’t it?

    It sounds like it was indeed a blessing that you didn’t go hiking yesterday. If going from the car to the movie theater and back in was enough to trigger symptoms, I am guessing hiking would have been past your limits yesterday! I know transitions like that (hot car to air conditioned movie theater back to hot car) are rough for me. My body can’t seem to handle the sudden change very well.

    I tend to think we chronically ill patients all occasionally overestimate our own limitations. Also, it seems to me that all chronically ill patients have probably experienced simply wanting to forget the limitations too!

    I truly believe raising awareness of dysautonomia can help many people. I am just blown away by how very many people experience these symptoms. Last week I went to the dentist and discovered that he and his son have had POTS episodes. I think dysautonomia is a widespread problem.

    Great post!


  2. Are heat intolerance and dysautonomia linked or somehow related? I hadn’t realized that might be the explanation for why I feel SO much worse when the weather is hot. And in fact, pretty much all summer long in general. I’ll definitely be asking my doc about this — thanks!

  3. Pingback: Dysautonomia? Part 5 — ChronicHealing.com

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  5. Interesting. You sound a bit like me with Mitro Valve Prolapse.

  6. REALLY important stuff.

    If your autonomic nerves in your pelvis are injured – as they are in endo – then it gives rise to autonomic dysfunction ?


  7. Oh, I feel your pain! I have Dysautonomia as well, and I just recovered from a three hour Hysterectomy surgery that gave me the worst Dysautonomia crisis I’ve ever had in my life and was sick for eight weeks before feeling normal. We will have to talk more, I know no one with the condition! I have a weird form that combines POTS with OH myself.

  8. Hi.
    Id like to know what symptoms you have when you go to a dentist appt and what kind of anesthesia do you get.
    I really need to go to the dentist but I just cant take the anesthesia.. I get really sick, cant talk, cant get up from the chair in the end, cant even think or talk normally!
    Is this common in POTS patients?
    thank you so much

    • I have blood pressure reactions to the novacaine. They have to be very careful not to tilt the chair back too quickly, especially after the novacaine has taken affect. I have never experienced other anesthetic types, so I can’t comment on them. Also, be careful when they are returning the chair to it’s normal position and remain there for a while before getting up.

  9. I happened upon this post during an episode of dysautonomia induced insomnia. I was diagnosed about 6 months ago and still have so many unanswered quesions. But, what led me to comment on this post was the “smoke smell” you mentioned. I get it too, thought I was being paranoid because brain fog has led to me forget things on the stove. It is somewhat comforting to know that someone else experiences it too and I’m not just imagining it. Thanks for writing about it! Take care.

  10. I get the smoke smell too! I haven’t had it in a while and had forgotten about it until I read your article, and to learn that another poster had it too makes me very curious as to what it is caused by!

    I have been in bed 70-90% of the time since June 2008. When I can be up I go 100 miles an hour and find that my activities have no baring on how I feel (unless I do something like bend over or something particular to aggravating POTS), people do not understand and tell me to pace myself. Why? If I can I do and when I can’t I have no choice, I don’t. My body let’s me know instantly like a switch is flipped. I have never fainted I just feel like death when I stand for any length of time, I vomit alot, I have horrendous headaches, profound weakness and whole months where I do nothing but stare into space. I cannot hold a book up so my library of books which should have been devoured during this downtime sits gathering dust. My macbook air was dropped so many times it finally died. My husband bought me a 4 wheel scooter this weekend so I could go out and see what summer was like — I missed last summer entirely I have no recollection of even missing it. POTS sucks and I plan on getting better any day now!! ;o)

    • Cindy / Colorado

      I also happened upon this post looking for answers because I was diagnosed with POTS from the Mayo Clinic about a year ago. I’m a lot older that most people that get it but I was told I had it all my life (it explains all the fainting and tachycardias when I was younger). It hit me with such a vengeance last December I couldn’t walk for two months and I still struggle everyday.
      I was wondering if any of you POTS sufferers get migraines or muscle pain?

  11. @Cindy:

    I had a tilt table test in April 2010 and my newest cardiologist (I ditched the first one) thinks I have neurocardiogenic syncope. (My PCP thought it was POTS).

    Since I wasn’t having fainting problems by the time the test (TTT) got scheduled (thanks to delays by Cardiologist #1), I don’t know for sure if I have NCS or POTS but I do know I have dysautonomia.

    In answer to your question about migraines and muscle pain… Yes and yes.

    I have written about migraines recently on my blog and I have a long and winding history of muscle pain courtesy of fibromyalgia.

    I haven’t had a chance to blog in detail about my migraines this past week but I saw a neurologist on Tuesday and started physical therapy for cervicogenic migraines last Thursday. (Endochick gets similar PT).

    My migraines are definitely tied to hormonal fluctuations but I have no doubt my neck problems are a big factor also. (I’ve got more posted on Facebook than my blog about this past week of ‘migraine management’).

    Feel free to send me a friend request by clicking the Facebook icon on my blog. Please include a message in it to let me know you’re the Cindy from Endochick’s blog comments and I’ll try to get you connected with a woman on Facebook I know who writes a lot about dysautonomia.

    I just set up a page for my blog on Facebook too. So, please stop by for a visit. The post Endochick references in this post was the series I wrote about my “initiation” to dysautonomia. I have also found people on Facebook and YouTube who have dysautonomia. So, I might be able to help you get connected with fellow patients.

    Jeanne (from Chronic Healing that Endochick mentioned in the post)



    As always, I didn’t mean to hijack your post. Cindy’s comment triggered an email and I just happened to be online when it popped in. 😉

  12. I just came across this while googling “pregnancy & dysautonomia.” I was diagnosed in my 20s (10 years ago) and am now planning to have a baby with my amazing husband of one year. I’m a little nervous, but glad to know you made it through ok. Thank you for sharing!

    • Good luck with trying to conceive. It’s my personal experience, but when I was pregnant with my son, my dysautonomia seemed tolerable. Of course, some of the complications that occurred were because of my faulty autonomic system, but the blood pressure and fatigue, and heat intolerance were easier to deal with. Now, when I was pregnant with my daughter, my system went haywire. I was told this was because my system was already on shaky ground. So, I would recommend you follow your doctor’s advice in ttc. Get all your concerns out in a heart-to-heart before a baby appears.

  13. This was a wonderful post! I would love to see more blogging about dysautonomia! I was diagnosed at 19 and am now 23 and struggling with it daily. It has always been a struggle for me to explain to others what exactly my “good days” and “bad days” entail. It was interesting to hear someone else put it in their own words to describe the symptoms and experiences! I personally struggle with feeling broken because I am never sure if I will be feeling up to what I have planned for the day. While my close family and friends understand the roller coaster of health, others do not. I would be really interested to hear what treatments have worked with managing your symptoms! Thanks again!

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