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Dysautonomia? Part 4

If you haven’t yet read my previous posts Dysautonomia? Parts 1, 2, & 3 please do so because this post won’t make much sense if you haven’t read them first. You can link to parts 1-3 of the dysautonomia series HERE if you have not read them, missed a part, or want to refresh your memory.

Part 3 left off with me having found helpful information online regarding dysautonomia, including information here HERE on POTS a.k.a. postural orthostatic tachycardia syndrome (a type of dysautonomia).

POTS Logo2

This post will pick up where the last left off chronologically.

The day that scared me:

One day, I could not get out of bed. Let me be more specific. My husband went off to work and I was still in bed. My daughter tried valiantly to wake me up. I never even gained consciousness/was aware that she was trying to wake me up. Frighteningly, she tried over a period of hours to wake me up. (I feel just terrible that she went through this)! In any event, she finally got me conscious enough to recognize her, know where I was, and have some clue of what time it was. I felt just awful at what she had been through trying to get me to stir!

So I used every ounce of energy I had and somehow managed to make it out of bed. I very carefully walked downstairs and it was a scary flight of stairs indeed. By the time I got to the bottom, I felt seriously faint and nauseous and knew I had to lie back down ASAP. I managed to stagger into a downstairs bedroom and collapse on a bed. Her response was, “no, Mommy, you just got up!” That is the last thing I remember. I was out for about 2 hours from that point. When I finally became conscious again, I had the presence of mind to ask her to go and get my new blood pressure machine.

By this point I had gone out and purchased a machine after working my old machine to its literal death last summer and not wanting to spend the money to replace it until this summer… after having taken my blood pressure with a blood pressure monitor in a grocery store and finding it to be low (112/52) at a time when I didn’t even feel faint yet. I knew there had to be times it was lower than that and that those must be the times I was feeling faint. My blood pressure had never been that low before.

BLOODPRESSURE_SXU.HU_909106_-_beep_beep_-

Anyway, back to the day I couldn’t wake up. She brought the blood pressure machine to me and I then took my blood pressure. It was a scary 84/49 with a pulse of 46! No wonder I was feeling faint! No wonder I couldn’t get out of bed! That blood pressure and pulse really scared me. Prior to that, I had never seen my blood pressure under 115/75 at the lowest and my pulse has always hovered around 80-90 beats per minute. It made me wonder how much lower my blood pressure had gotten other times (because the first 3 weeks were the worst with the feeling faint and this was in the fourth week). By the time I bought a machine and started checking it, I was heading towards a better end of the spectrum overall (despite the day I just described). Another thing I found alarming was that my diastolic jumped over 50 points in just 3 hours one day. I got 90s over 50s many mornings and then a short time later I had pressures like 167/107. That was while on a medication that’s supposed to regulate my blood pressure!

My primary care physician had seen me not once but twice in the week preceding this scary incident. She was on a two week vacation starting the day this happened. Her office wanted me to go to the emergency room. It was late in the day and her partners didn’t have any openings in the small amount of remaining time for office hours. I asked them, “what will they (the ER) be able to do for me?” I was told these two things:

monitor my blood pressure

adjust my blood pressure medication if needed

I was already monitoring my blood pressure at home with my brand new machine. Having stranger doctors from the ER toy with my medications when I have an extremely complicated medical history and long, long list of drug allergies was not sounding wise to me. I understood why they were suggesting the ER but I also doubted a $200 copay trip in to the ER to be seen by strangers was going to be helpful. The office was basically just concerned with me being seen by a doctor… not so much an ER doctor. Then, my husband had a brilliant idea. He suggested going to my gynecologist. (I have a GYN and a pelvic pain specialist. He was talking about the GYN). This was a stroke of genius. My GYN knows my complex medical history and some people don’t even have a PCP. Some people use their GYN for the functions a primary care physician would do. I was so freaked out about my 84/49 blood pressure and feeling so lousy that I never would have thought of it. So that’s what I did. I thought it was classic that by the time I got out of the house and rode 45 minutes to his office and waited a little bit in his waiting room that my blood pressure had risen to nearly normal.

If I had gone to the ER, the wait time there would be such that my blood pressure probably would have been high by the time I was seen. It certainly would have been at least normal because of what it was at the GYN. So I am grateful that my husband’s quick thinking saved us a grueling trip to the ER to have strangers treat me like, “why are you here?”

twitter_home

More information from twitter friends:

In the meantime, Elizabeth sent me tweets that revealed that she has another form of dysautonomia called vasovagal syncope. She sent me helpful information about the tilt table test (TTT) that my primary care physician was talking about being my next step (see below). Elizabeth sent me a lot of information about her experiences with the TTT. Elizabeth just blogged about her experiences with fainting today here:

Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope

Finally, my twitter buddy and fellow endometriosis patient Sherri, who you may know as @missmotorcade on twitter, shared information with me regarding her father who has similar symptoms to mine (which in his case were misdiagnosed as dysautonomia but are actually another issue).

These are just the people I exchanged messages with the most. There were others. Again, I never even so much as sought out information on these topics. One reply tweet back to Melissa (see previous post for how one tweet triggered a large response from people on twitter) and everything just fell into my lap. Amazing! The power of twitter continues to surprise me all the time.

So basically I had I waited out the two weeks my PCP was on vacation. I was tempted to call the cardiologist’s office but my PCP (who I really like) is a big “rule follower” and I didn’t know if contacting the cardiologist directly would be perceived as me “going behind her back” since it had been awhile since I’d seen him. I had already defied her office by not going to the ER and I didn’t want to tick her off. In any event, as I mentioned before, I got an appointment for the day she came back and she did want me to see the cardiologist. My primary care physician seemed to think that my cardiologist (with whom a have a previous doctor-patient relationship… long story) would order a tilt table test (TTT).

TTT_nymc.edu_upright_70_degrees_small

Tilt table test

While waiting to get in with the cardiologist (only a matter of a couple of days), I had learned about the TTT and was a bit apprehensive since it sounded the the objective of the test is to TRY to cause the patient to lose consciousness (while the patient is hooked up to monitoring equipment, of course). While not sounding fun at all, I certainly could handle that if it was what would get me answers/relief. However, beyond that I was learning about an arm catheter for administration of some sort of adrenaline-type substance being used for some TTTs. The arm catheter is apparently quite painful. So, basically, this TTT was sounding less and less attractive to me but whatever it takes to feel better, I was prepared to do!

So, will I be having a TTT? Stay tuned for the next post!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Dysautonomia? Part 4

13 comments

1 AmandaNo Gravatar { 08.10.09 at 1:50 am }

It all sounds so awful, Jeanne, I am so sorry you’ve had to go through all this and am keeping you in my thoughts as always xx
.-= Amanda´s last blog ..Painting from the Heart =-.

2 Melissa RalstonNo Gravatar { 08.10.09 at 4:35 am }

J –

As you know, my high-risk doc had put down on my long-term disability paperwork that I had vasovagal syncope with tacchycardia. She figures that pregnancy has brought this on (others may not be aware but I have been passing out regularly during my current pregnancy resulting in 3x a week IVs and a whole whack of appointments), but I’ve had the following symptoms even before this has happened. Let me describe a bout for me:

I will all of a sudden feel as though the blood is rushing to my head, a “hot” feeling that creeps up through my body (sometimes rather quickly like a hot flash). I then become aware that I’m covered in sweat. My heartbeat seems to jump into my throat and starts to pound so loud that I’m sure it echoes through my body. I feel sick and sometimes will vomit. I know through prior experiences of passing out, that if I’m not braced against a wall by this time, I’m going down (sometimes even a wall isn’t enough). It’s then that my muscles start to shake. I might be able to respond and mutter a few words, but everything is really “quiet” at the time, like having a set of ear plugs in. I also more often than not lose vision during these attacks. They can come from standing and walking, but I have had a few when I have been sitting.

Now I haven’t been to a cardiologist to get the official diagnosis considering other than a heart monitor and blood work there isn’t much they can do in terms of testing right now. But based upon my symptoms, my high-risk OB who is an internist has given me this diagnosis.

Anyway just wanted to share my experience on the topic.

Take care,
Melissa
.-= Melissa Ralston´s last blog ..Rejection from the System =-.

3 JeanneNo Gravatar { 08.10.09 at 6:42 am }

Amanda,

Well, it wasn’t my favorite experience. That’s for sure. I’m just grateful that my symptoms have improved. Hopefully by sharing my experience maybe someone else can get the help they need to get relief of their symptoms. It amazes me how many people I’ve encountered in the last few weeks who have dysautonomia!

Jeanne
xo

4 JeanneNo Gravatar { 08.10.09 at 1:03 pm }

Melissa,

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

5 YayaNo Gravatar { 08.10.09 at 1:55 pm }

Gosh Jeanne. This sounds so incredibly scary. When you told me about the incident I just didn’t realize it was this severe. (I’m talking about the incident where your daughter was trying and trying to wake you up) and I didn’t realize it occurred over so many hours. How incredibly scary for you and your daughter. I really hope you get the answers you need.
.-= Yaya´s last blog ..Why I’m A B^tch =-.

6 JeanneNo Gravatar { 08.10.09 at 3:18 pm }

Alicia,

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

7 AvivaNo Gravatar { 08.10.09 at 3:41 pm }

Wow, Jeanne! Very scary!!

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!!

8 JeanneNo Gravatar { 08.10.09 at 5:10 pm }

Aviva,

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

9 JasmineNo Gravatar { 08.11.09 at 2:23 am }

I’m so glad you improved also Jeanne! What a scary experience – one I can’t imagine. Hugs!
.-= Jasmine´s last blog ..Diagnostic Testing =-.

10 JeanneNo Gravatar { 08.11.09 at 9:55 am }

Jasmine,

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

11 Twitted by momtojake { 08.11.09 at 12:52 pm }

[…] This post was Twitted by momtojake […]

12 JeanneNo Gravatar { 08.11.09 at 1:28 pm }

Melissa,

Thanks for tweeting this post.

Jeanne

13 Dysautonomia? Part 5 — ChronicHealing.com { 11.18.09 at 10:37 am }

[…] Dysautonomia? Part 1 Dysautonomia? Part 2 Dysautonomia? Part 3 Dysautonomia? Part 4 […]

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