Dysautonomia? Part 1
There is far too much information to fit it all into one post. Therefore, I have split it up into several parts to make a series.
Starting with the present:
I do not have an official diagnosis for the collection of symptoms that have affected me in the last few weeks (symptoms which I do not attribute to any of the many chronic conditions with which I have already been diagnosed). My doctors seem reluctant to pinpoint a name at this point in time.
Frankly, I’m less concerned with what it’s called than dealing with the symptoms themselves. So if my doctors can help me to feel better without getting into a name game, I’m content. I have enough diagnoses on my head. I’m not too fixated on obtaining another label to add to the list. As long as I’m getting better… I am not going to fret over the name.
In the interest of writing about my experiences though, I’m going to relate what I have learned in the last few weeks because I have encountered a striking number of people who have had similar experiences or who have loved ones who have. Not only would I like to explain what’s been happening to me lately (which some of you know from twitter or email messages exchanged) but I hope that sharing my experiences might help someone else who winds up reading this.
Six weeks ago:
So, let me start at the beginning. About six weeks ago, a troublesome set of symptoms began to emerge for me. The one that grabbed my attention the most was that I suddenly felt faint, to some degree, all day every day… with numerous near-misses throughout each day. Literally, one day this just became a huge problem. It was quite sudden. I blogged about how I was feeling near the beginning of these symptoms starting up here: Fun For Healing UPDATED. I also referenced it here: Paging Dr. House.
Suddenly there were too many times to count each day that I grabbed onto chairs, walls, or whatever I could get my hands on to avoid hitting the floor. I have my share of experience with fainting over the years and there was no doubt that this is what was happening… (i.e. close calls for unwanted meetings between me and the floor)! I managed to squeak by without actually fainting by paying close attention to my symptoms/reacting quickly and simply being fortunate.
In addition to all the near-misses with fainting, I felt dizzy, lightheaded, weak, and nauseous. I also had extreme fatigue set in. I am no stranger to fatigue between my fibromyalgia, obstructive sleep apnea, and endometriosis in particular. This was different. This fatigue hit me very suddenly and at the same time as other symptoms. In the first 3 weeks or so, I had a brutal headache in the front lobe of my head. It was intense! Then there were times when I woke up in the morning that I was physically unable to get out of bed. I was too weak and tired to move. It was scary.
While my heat intolerance (see Endochick’s post on heat intolerance and my comment to it HERE) certainly didn’t do me any favors and while it’s not unusual for me to faint each summer now (at some point) from the heat, this particular summer has been cooler than usual overall and these symptoms were happening on days that simply weren’t hot enough to explain my feeling faint.
After paying close attention to my symptoms and concluding that they were not stemming from various conditions I have already been diagnosed with, I started to ponder what else could explain these symptoms. The dizziness alone came in several forms: full-body dizziness where I felt like I was going to keel over, dizziness that caused me to actually lose my balance when I performed such taxing/daring operations as, well, walking, and the lovely dizziness inside my head where it felt like my head was spinning… among others. (The spinning head dizziness strongly reminded me, unpleasantly, of what it felt like for me to drink alcoholic beverages… a dizzy-headed feeling I detest). Basically, I felt like I was drunk… no small feat for a person who doesn’t drink.
I went over various theories trying to figure out what was going on. Could my blood sugar be off? (My mother has diabetes). No, she let me use her meter when I was at her house and my blood sugar was ideal. Had I been exposed to something that triggered my multiple chemical sensitivity? (Chemical exposures have certainly resulted in me fainting in the past). No, I couldn’t think of anything.
What happened next? Stay tuned. This post will be the first in a multi-part series and there is much more information to come.
This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.
“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum
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20 comments
Oh Jeanne, I have been thinking of you and am keeping you in my thoughts… I do hope the doctors manage to help treat the symptoms soon. It all sounds terrifying and I am sending you all my love x
Amanda´s last blog ..Happy Lughnasadh
Amanda,
Thank you. It has been interesting to say the least. I really feel for people who have these symptoms all the time! I still have symptoms… but not like before. I am hoping that writing about my experiences might help others. Thinking of you too. xo
Jeanne
[...] This post was Twitted by Endochick [...]
Endochick,
Thank you for tweeting about this post!!
Jeanne
Dysautonomia has plagued my life since I was 15. It’s one hell of a roller coaster and you wonder when does this ride stop! My particular dysautonomia is referred to as Mitral Valve Prolapse Dysautonomia and was caused by undo strain being placed on my heart. At the age of 15 we were not sure why it presented as I was at ideal weight, ideal physical condition, everything was normal. I was given medicine to try that didn’t help and was eventually prescribed a regimen of water to drink and two cups of caffeine coffee to drink every morning. To a 15 year-old, this was music to my ears. I didn’t have too many problems with my MVPD after that – the occasional fainting spell when I exerted myself, I got dizzy easily, but nothing major like passing out from merely standing up that had led me to my diagnosis. Then, when I got pregnant with my son I passed out a couple times. They said it was normal and I agreed. He ended up being delivered 2 weeks premature because I had hypertension. But when I had my daughter, well, all hell broke lose. I could barely stand up, was passing out all the time, my heart was racing.. sound familiar? I demanded to see a cardiologist. It was my MVPD.
I am sure it was my MVPD that caused me to have those mini-seizure episodes last summer and keep passing out, as well.
The worst part of this disease is that most doctors don’t understand it. They don’t know it well enough to diagnose it, and if they can’t diagnose it then they can’t treat it. And then ones who are clueless look at you like a hypochondriac. And you go from one doctor to another doctor feeling as if you are dying because every time you stand up your blood pressure drops. Rarely do you get an answer and eventually you just give up and resign yourself to feeling… different.
Endochick´s last blog ..Just a post
[...] you haven’t yet read my previous post Dysautonomia? Part 1, please do so because this post won’t make much sense if you haven’t read that one [...]
Endochick,
Wow… I didn’t know you’d had it that long. It’s interesting to me the numerous types of dysautonomia there are. It seems that the criteria used for classifying a given case isn’t entirely clear. There also seems to be conflicting information. (More on that in a minute. It pertains to caffeine). Sorry to hear about the difficulties you had while pregnant with your daughter. Yes, it sounds familiar. It’s good that you advocated for yourself and saw a cardiologist to verify what was happening rather than have other doctors engage in guesswork!
A few years back I was told I had mitral valve prolapse. (There are studies that tie MVP with endometriosis… as a possible co-existing illness). Anyway, I later went to another doctor and they didn’t hear MVP. At first, I thought this was a matter of which doctor was doing the listening. However, I then had the same doctor hear MVP at times and not hear it at others. This baffled me since I thought that was something you either had or didn’t. Then this same thing happened with a heart murmur that comes and goes. I thought it odd that either would come and go. That’s what happened, though.
Closer to two years ago, I had been referred to a cardiologist after having dizziness, shortness of breath, and chest pains. I had been through the EKGs and Holter monitor by this point. My primary care physician referred me to a cardiologist and I had an echocardiogram-stress test. I basically failed it… mainly due to very high lung pressure. So the cardiologist now referred me to a pulmonary specialist from the critical care unit of a large teaching hospital. I was being evaluated for possible pulmonary hypertension (PT). PT is when the pressure in the lungs is too high and it can be fatal in some cases. Needless to say I was on edge for the two months it took me to be seen by him but there was no cancellation list because everyone waiting to see him was as anxious to do so as I was. I finally saw the pulmonary specialist. He was very thorough. He looked at my medical history paperwork (which was quite lengthy) and listened to me carefully. He also quizzed my husband about what I do when I sleep. He then announced that he didn’t think I had pulmonary hypertension at all but suspected I had sleep apnea. So he referred me to the sleep disorder clinic and… he was right! I have obstructive sleep apnea. Apparently, it can cause strange lung pressure readings. So he ordered CPAP treatment for my sleep apnea. (I later had another echocardiogram-stress test. It wasn’t perfect – the amount of time I could tolerate the treadmill was far lower than they like to see for my age, for example – but it was better than the first one).
Anyway, the cardiologist said I have “valve insufficiency” but that he wasn’t super-concerned about it. I guess he could hear about a 2 out of 6 with 6 being the worst. Apparently the valve insufficiency goes hand in hand with MVP and heart murmur (based on a recent conversation I had with my PCP). All I know is I used to have to pre-medicate for dental appointments but I no longer do. I guess they changed the criteria for that.
In any event, I was told in the last few weeks by both my PCP and my cardiologist NOT to have caffeine. They both went out of their way to tell me this. So I find it interesting that you were told to have caffeine. Things that make you go, “hmm”…
As far as the episodes you had last summer, I didn’t start blogging until June 2008. So I was out of the loop for the blog posts you wrote about this stuff. I had actually come across them while putting this series of posts together. What do you mean mini-seizure? I thought you fainted. My husband has had mini-seizures and he never faints with them. So I’m curious. He had been misdiagnosed as having TIAs (mini-strokes) when actually he started having mini-seizures in high school. The neurologist he saw a few years back told him it was mini-seizures he’d been having… not mini-strokes.
My PCP (at a recent visit) thought my cardiologist would order a test that he didn’t end up ordering (more details in a post later in the series). I have no problem with skipping the test. I’m just hoping that doing so isn’t going to result in preventable symptoms. However, I can see the cardiologist’s reasoning in how he proceeded. So, I’m going to give his way a chance. If he doesn’t get to the bottom of it, I am thankful that @POTSawareness (from twitter) gave me a list of doctors well-versed in POTS. One of them is about an hour away from here (in the opposite direction from my current cardiologist). My PCP thought the test would be ordered to rule out POTS (postural orthostatic tachycardia syndrome). Time will tell how this plays out. I’m going to give my cardiologist a chance. It’s good to know I have the name of another doctor in the event I should need it.
I try not to self-diagnose but can’t help but thinking that the POTS form of dysautonomia may be what I have. I asked my PCP about it and apparently the same causal factors behind POTS are behind neuropathy. As I have neuropathy and since the POTS symptoms are a perfect match to what I have been having, I wouldn’t be surprised if that’s what I have. She acknowledged the possibility but didn’t seem to want to label it. I think she was deferring to the cardiologist. He didn’t get into names. So, we’ll see!
I’m sorry you have been dealing with this for so long!!
Jeanne
What a great description of dysautonomia and POTS! I was just diagnosed a couple weeks ago (I also have chronic fatigue and immune dysfunction syndrome). I’m looking forward to reading Part III!
Terri´s last blog ..Rambles
The caffeine – I was told, at the time, to drink two cups of coffee upon waking up and that was the only amount of caffeine I was allowed. This was meant to act as a jumpstart for my blood pressure because I couldn’t tolerate the medicine they had me on that did the same thing.
The Mini-Seizures – Last summer I was having terrible dysautonomia spells, became literally house bound. Was laid off of work on medical leave all summer because of it. It became so taxing on my nervous system that it messed with my migraines to the point that I was experiencing what my neurologist termed mini-seizures (these occur like the absence seizures commonly found in children). I haven’t had one in well over 6 months, but the smoke smell I began smelling with these episodes still lingers on occasion.
Endochick´s last blog ..Just a post
Terri,
Welcome to my blog! Thank you very much!
I just took a quick peek at your blog and look forward to taking a closer look at it. I had read somewhere that some believe that the Postural Orthostatic Tachycardia Syndrome (POTS) form of dysautonomia is somehow linked to ME/CFS. I guess there is some controversy about whether they are considered to be related.
Anyway, I’m happy that you found my blog and I’m looking forward to checking yours out more. I saw something on your blog about wanting to connect with ME/CFS patients. You were talking about Facebook and I do have some contacts on there who have ME/CFS but I am used to connecting with them more on twitter. ME/CFS patients are very active on twitter! They had a tweet contest in May for ME/CFS awareness month and I won 3rd place (for the 3rd most tweets of everyone who tweeted and retweeted about ME/CFS). Anyway, if you click on my Facebook icon on my homepage and send me a Facebook friend invitation, I’ll link up with you on Facebook… and get you linked up with a couple of ME/CFS patients there. Can you just take the ‘add a message’ option and tell me you’re the Terri who’s looking to connect with ME/CFS patients when you send me a friend request?
Since twitter seems to have much more activity for ME/CFS, you might want to consider getting a twitter account too, if you don’t already have one. Please forgive me if the “ME/CFS” wording differs from what you’re used to. I know there is some naming controversy. This (ME/CFS) is the naming that was being used in May during awareness month so this is what I’m used to. Obviously I have heard the term CFIDS too. It’s confusing when there are multiple names for the same things.
I’m happy to hear you’re looking forward to part III! I have never written a series like this before. I sat down to write a post thinking, “I have a lot to write about. I may need to split the post into two parts”. The next thing I knew it had grown large enough to need 5 parts! To do it justice, I felt it needed some space. Much has happened to me in the last few weeks plus I have encountered a striking number of people with symptoms like mine. So I just had to give the subject the space I felt it needed. I hope that somehow sharing my own experiences and what I have learned may help others.
Jeanne
P.S. If you sign up for twitter, be sure to follow the @POTSawareness account. That lady is so nice and helpful!!!
Not so much the “feeling faint” but the balance and dizziness and “feeling drunk” sound much like the two months of virdigo (or is it virtigo? never spell that right!) I had early this spring. My symptoms were also accompanies by severe mood swings, especially lots and lots and lots of crying. It was diagnosed a “viral labrithitis” or a viral infection of the inner ear, leading to vertigo. It took about 2 months to get about 95-95% improvement and another couple to fell about 98% full resolution in symptoms. Even now I can still have an occasional “wave” of that “drunken” feeling hit me by surprise, but usually days or weeks apart now and rarely very significant.
With your feelings of faintness being your primary complaint (and this not something I really dealt with), it doesn’t sound like we are probably dealing with related issues, but just wanted to let you know I feel for you! {hug}
Jenni Saake – InfertilityMom´s last blog ..Happy Birthday to Me, My Gifts to Thee…
Oops, I meant to say, about 2 months to get to a 90-95% improvement. Sorry for the typo.
Jenni Saake – InfertilityMom´s last blog ..Happy Birthday to Me, My Gifts to Thee…
Endochick,
That’s interesting. I had used caffeine to help me through that first 3 weeks. Then my PCP told me to avoid it. Then my cardiologist said the same thing. Was your blood pressure too low when you woke up?
I’m sorry you went through all that. I’ve heard you talk of the smoke smells but I guess I never heard the “beginning” going back to last summer until I set out to write these dysautonomia posts. My husband has had those mini-seizures. He gets really, really tired afterwards. One might only last a few seconds but the aftereffects can be brutal.
Jeanne
Jenni,
There are so many conditions that can cause dizziness, lightheadedness, and “feeling drunk”. I think this is part of why people have such difficulty obtaining proper diagnoses. My husband had vertigo a few years back and what he had seemed different that what I have been having. Both involve the symptom of dizziness. However, there are differences. Neither he nor I experienced mood swings in conjunction with the dizziness and other symptoms. Amanda blogged about labyrinthitis HERE.
It does sound like different causes for your dizziness and mine. However, I appreciate the thoughts!
I wish you the very best of luck with your upcoming IV treatments!!
Jeanne
[...] you haven’t yet read Dysautonomia? Part 1 and Dysautonomia? Part 2, please do so because this post won’t make much sense if you [...]
Hi I’m reading your posts as I follow you on twitter. The autonomic nervous system basically is the one which directs your body to do things you automatically eg your heart to beat/keep rhythm, sweating, temperature control, causes BP to rise and fall.
Dysautonomia is when the messages are not correct eg the blood pressure my rise suddenly or fall suddenly with sometimes loss of consciousness. You may get a very fast or very slow heart beat. You may sweat inappropriately etc.
Dysautonomia is more common as we age. We can do things to cope such as getting up slowly to give our body a chance to adjust.
I got dysautonomia, I think, because of the stress of chronic pain for a long time. I notice you have chronic pain. If its decided you do have this it’s wise to pay attention to warning signs of drops in blood pressure.
Things which bring about balance between the sympathetic and parasympathetic nervous systems could be a great help eg meditation, acupuncture, immersing in water etc.
My dysautonomia was corrected by Yamamoto New Scalp Acupuncture, developed to treat neuropathic problems and stroke.
Hope things improve for you soon.
Hi Jeisea,
Yes, I remember you… my twitter friend.
I’m sorry I’m slower-than-usual in moderating comments. These dysautonomia posts are really keeping me hopping!
Yes, I have been reading quite a bit about the autonomic nervous system lately. It’s amazing how a “mayday call” from our bodies can motivate us to research as quickly as possible to get up to speed.
In my case, my blood pressure was very low in the first few weeks of this “episode”. Then it started spiking up and down (too low and then shooting up too high within a short span of time). Also, my pulse is low (both when BP is low AND when it’s high)… far lower number of beats per minute than I have ever had before.
Interesting. I haven’t come across any references to age as a factor. Do you know of any research studies on this? Yes, I have learned the crucial importance of standing up slowly. My body taught me that lesson early on. I have tried to bear it in mind because sometimes when I’ve been feeling (relatively) better, I forget… and my body gives me unpleasant reminders.
It’s interesting to me how very many people I have encountered in these last few weeks who have dysautonomia in some form along with various other chronic illnesses. I have seen some writings about it being considered a co-existing condition to a couple of specific chronic illnesses (at least one of which I have). I haven’t found a ton of research to support links to particular illnesses co-existing with dysautonomia as of yet but I think part of that is a sheer lack of research. I agree that paying attention to warning signs is important. (For example, I had my husband drive me around when I didn’t feel safe to drive due to symptoms like feeling faint).
I need to meditate more often than I do. I LOVE acupuncture!!! I hadn’t heard anything about water immersion in relation to dysautonomia. Does that help you?
That’s awesome that your acupuncture is helping you! I haven’t had that specific type. My acupuncturist does Japanese acupuncture (a combination of Manaka and merdian therapy). That’s fantastic that you’ve gotten such benefit.
Thank you so much for your detailed & thoughtful comment.
Have a wonderful weekend!
Jeanne
P.S. I just left you a comment on your post about the acupuncture you get.
Oh Jeanne, I didn’t realize it was this bad.
Yaya´s last blog ..Friday Fragments/Focus Friday
Alicia,
Honestly, I have grown accustomed to poorly understood conditions affecting me. I’m used to having to advocate for myself and do my own research to prepare for appointments with doctors. So the good news with this situation, however scary it did get at the “rock bottom” I had a few weeks back, is that I was equipped to seek out appropriate medical help. Also, it is wonderful to have access to such great information online. Last but not least, awesome (in real life) friends like you are always there for me!! I feel really fortunate, actually!
Jeanne
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