Thanks for tweeting this post.

Jeanne

Well, it wasn’t my favorite day. That’s for sure. I am just extremely grateful that I feel better now than I did a couple of weeks ago and I am hoping that this problem won’t recur. (I realize this may be wishful thinking but I can hope)! I’ll see the cardiologist again next month.

Hugs back to you! I hope you are feeling better!!

Jeanne

Hmm. While I was scared at that blood pressure and pulse being so low, I hadn’t quite taken my brain to the “call 911″ option. I’ll have to think about that one. Sad to say, I’m afraid it would be very difficult for an adult to differentiate between waking me up on a “normal day” and trying to rouse me when my blood pressure is low enough to keep me from gaining consciousness (aside from sheer amount of time trying to rouse me).

With my sleep apnea, it is always very difficult for people to wake me up. (People, by the way, are the only means of waking me up). When I lived alone before I was married, I had 5 alarm clocks and still couldn’t wake up. I now know that the stopping breathing throughout the night results in me not ever getting to the restorative sleep phase. (When the sleep disorder clinic tested me, I had no restorative sleep phase whatsoever). Zero.

I have struggled a great deal with problems with my CPAP headgear ever since diagnosis with sleep apnea about 1.5 years ago. It’s a long story but my husband (who has an engineering degree) has taken apart my headgear and put it back together again many times, trying to “rig it”, but I keep having serious problems with it. (Basically, the CPAP provider hunted hard and found a latex-free, PVC-free headgear for me but I’m still allergic to it so I have to put a barrier between my headgear and my head, etc. The barrier makes it want to slip off my head if I dare to roll over). You get the idea. The headgear without a barrier gives me painful boils on my head… lots of them (right through my hair)!

Anyway, the bottom line is that I’d love to wear the CPAP headgear every night faithfully because the pulmonary specialist told me it would help ALL of my illnesses. (It makes sense that getting needed oxygen would be helpful for many things)! Unfortunately, I have yet to get my headgear to work long-term. (I tried going back to the CPAP provider and getting another headgear already. The first headgear was even worse and the one I have now was the last option they had available).

The thing that scares me is that one night I was flipping channels and landed on a PBS piece on sleep apnea that talked about cardiac events being far more common in those with sleep apnea. The stats were really scary. So I do have concerns. I just wish I could get my CPAP headgear to work for more than a night or two at a time without some mishap.

You have a point about the time factor… as my husband doesn’t work around the corner. It’s good to know that an EMT can check you out at home for free if an ambulance ride isn’t necessary. I wasn’t aware that it works that way. Thank you for the idea.

I first heard of vasovagal syncope from Elizabeth (see her link in comment 4 above). I have since learned that Melissa, with whom I generally talk daily, has vasovagal syncope too. (I knew she has been fainting a great deal during her pregnancy but it wasn’t until she and I were talking about these posts that she mentioned that a doctor had written “vasovagal syncope” on her long-term disability paperwork recently). See Melissa’s link in comment 2 above.

It never fails to interest/amaze me how differently doctors behave. What I mean is that one doctor will give a dismissive “just a vasovagal response”, another will write it on some paperwork but not discuss it with the patient, and yet another will actually sit down with the patient and give the diagnosis and explain it. It certainly seems to me there should be more consistency.

I’m not into a label for the sake of a label but if getting diagnosed and “labeled” has the potential to lead to better symptom management/treatment options or awareness & understanding of what’s happening, it seems to me that all doctors should be doing it.

It really has been interesting the last few weeks because so many different people have told be about their various forms of dysautonomia. What inspired me to write this series was that I was stumbling across so much information about different forms of dysautonomia and I wanted to try to compile it in one place and weave my own experience throughout the posts. In this way, I hope to help others by sharing what I’ve learned.

I am so glad you are loving this series of posts. Thank you! Over the years, I have learned so much from fellow patients with the various conditions I have. When I learn something I feel could be helpful to others, I like to share it. I have seen the power of patients supporting each other and sharing information and it is powerful indeed. I am totally blown away by how much information has landed in my lap regarding dysautonomia in the last few weeks. I truly felt compelled to write this series.

Thank you so much for all of your enthusiasm and helpful retweets on twitter of these posts. The traffic these posts are getting is definitely more than I am accustomed to. There just must be a great number of people dealing with these symptoms. It makes me wonder how many people have been given the brush-off… such as the way your doctors said you were “just having a vasovagal response”. How many people struggle with the symptoms without diagnosis/treatment?

It seems to me that if doctors are dismissive like this then patients are left on their own to manage with symptoms that can be treated. I understand not everyone can tolerate the medications used for dysautonomia but it seems like doctors should at least give the patients their options. Also, one person commented on one of these posts about a specific type of acupuncture that she has found helpful for her symptoms. (See previous dysautonomia posts for a comment by Jeisea). I believe doctors should at least give patients their options.

Thank you, Aviva!

Jeanne

A couple thoughts: While you wouldn’t want your daughter calling 911 for silly reasons, I think that might be something you want her to do if you’re that hard to wake up (beyond normal levels). If there’s something really bad going on, the delay until your husband could arrive home and then call 911 could be devastating. (And there’s no charge for the EMT visit unless you go for an ambulance ride. If they check you out at home and you’re either fine or you’re able to get yourself to the hospital, there’s no bill.)

I’m fascinated to learn that vasovagal syncope is a form of dysautonomia!! I’ve had occasional fainting spells for at least a decade (although it didn’t become a frequent problem until I got sick a couple years ago), and had doctors dismiss it as “just a vasovagal response.” No big deal, nothing to be concerned about. Fascinating to know that can be a form of dysautonomia all by itself!

I’m loving this series of posts you’ve written!! I’m learning so much!! Thank you for sharing all fo this with us!!

Yeah, it was pretty much an all day affair. I was really out cold. You can imagine how badly I felt once she finally managed to get me conscious. So for me to immediately go “out” for another 2 hours, you can imagine that there was not a thing I could do about it. There was no “fighting it off”. Literally, I didn’t even get a chance to say “call Daddy” to her. I basically just focused ALL of my energy on walking and making my way to the bed. I really didn’t want to pass out on the way there and hit my head or something.

I could feel that terrible feeling I get when I’m going to pass out and I knew I had very little time. So talking (even 2 words) was just totally beyond my ability. I had the words “call Daddy” in my head but I just couldn’t manage to get them past my lips!

While she is accustomed to me being extremely difficult to wake up (I attribute this to the sleep apnea the most… but other conditions like fibromyalgia mess with my sleep cycles too), she obviously had never tried to wake me up for hours on end before. So she was “a little scared”. (I asked her about that day to get the wording straight from her. She says she was “a little scared”).

She is so easygoing that she just basically camped out on the bed next to me and read her book and occasionally shook me and yelled, “Mommy wake up”, from what she has told me. While I am glad that she wasn’t in a panic about it, I have explained to her (in light of this incident) that if anything like that ever happens again she should call my husband at work. I explained the difference between her trying to wake me up in the morning on a “normal” day as opposed to her trying to wake me up for hours like this was. (Alarm clocks have absolutely no affect on me whatsoever). So if there is a next time (God forbid) she will call him.

Needless to say, I feel badly that she had to go through all that. She has had to see things that no child should have to see. (i.e. She has seen me faint in doctor’s and dentist’s offices before). I am very grateful that she is very well-adjusted and takes everything in stride. She is a very happy child (as you know because you’ve seen her). She’s pretty darn unflappable.

While it saddens me that my medical conditions result in limitations to what I can do (limitations that do affect her), I daresay that I truly believe having a chronically ill parent has made her more empathetic, compassionate, and caring.

I realize this may sound strange but I have spoken with many chronically ill parents who have also noticed this “phenomenon” with their children. Having a chronically ill parent seems to expose children to not just the bad (watching the parent experience symptoms, be impacted by the parent’s physical limitations) but to good things too… like watching people help each other, watching the chronically ill parent persevere, watching problem-solving skills, witnessing the creativity chronically ill patients often develop to cope, possibly watching the chronically ill parent participate in support groups (online or off), perhaps watching the chronically ill parent developing supportive relationships with fellow patients, etc. There are life lessons to be learned from chronic illness.

I am grateful to be feeling better than I did a couple of weeks back. I’ll be seeing the cardiologist and PCP again next month. So I’m just taking one day at a time. My heart goes out to the dysautonomia patients who are so severely affected that they are housebound. I know it could be much worse than what I have had happen.

My hope is that by writing this series I can do my part increasing awareness of dysautonomia.

Some of my online friends have also blogged interesting posts about dysautonomia recently:

Elizabeth’s post: Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope

Endochick’s post: Dysautonomia: Making Life Crazy One Day @ A Time

I am happy to see people banding together to increase awareness about dysautonomia!! I have been absolutely blown away by the staggering increase in blog traffic for this series of posts. There just have to be a great many people out there dealing with these symptoms. I know that you know how powerful patients supporting fellow patients can be. Hopefully these posts will help people.

Jeanne

Yes. I actually didn’t realize that they had listed vasovagal syncope on your long-term disability paperwork until you mentioned it a couple days ago. Obviously I am well aware of the countless times you’ve fainted in the last few months, though! I just didn’t realize a doctor had put a name to it. It is mind-boggling to me the number of women I know who have both endometriosis and some form of dysautonomia. I know pregnancy affected Endochick’s mitral valve prolapse dysautonomia (see her post just published today Dysautonomia: Making Life Crazy One Day At @ Time. I am happy that they finally approved you for home health care to deal with your IV treatment rather than all of those hours commuting to the hospital for IVs!

You have been through so much and have fainted so very many times just in the last few months. I can’t imagine. I’m so sorry. I know some of your fainting episodes have resulted in injuries like when you cut your arm too. I’m so sorry you’re going through all of that. Elizabeth mentioned the muscle shaking she has with her vasovagal syncope episodes. (See Elizabeth’s post here: Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope).

Let’s hope that you’ll get some relief from these symptoms in a few months (post-pregnancy). The number of times you have fainted is so large. I only hope that things will improve for you sooner rather than later.

Thank you for sharing your experience here. It seems every time one person shares her experiences with dysautonomia that several more proceed to share their stories… a sort of domino effect. I think the more people share their stories the better. I know I sure have appreciated all of the people who have shared their stories with me regarding dysautonomia. The information I’ve gotten from my online friends (and from people I’ve just met online) is incredible.

Jeanne