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Dysautonomia? Part 2

Please note:

If 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 first.

By the end of the previous post linked above, I was attempting to make sense out of my sudden symptoms of feeling faint plus experiencing dizziness, lightheadedness, and extreme fatigue.

Blood pressure:

As time went on I noticed that the severe head rush which directly preceded feeling faint was often tied timing-wise to having stood up. Bear in mind that I have never, ever had to worry about my blood pressure being too low. There have been plenty of times in my life where my blood pressure was normal and other, isolated times where it got too high. There have also been some extreme times (during hospitalizations) where it was dangerously high. (One hospitalization, for example, my blood pressure reached 250/153… which is ridiculously high). Overall, though it was normal. It had been known to spike during times of duress for my body but my average blood pressure for many, many years hovered right around the infamous 120/80 we hear so much about.

BLOODPRESSURE_SXU.HU_909106_-_beep_beep_-

My blood pressure over time:

Let’s face it. With all of the specialists I see, my blood pressure gets taken a lot. If it were ever off for any length of time, there was an army of doctors who would have stepped in and put me on medication. The fact is that my blood pressure was usually as normal as can be. When it went out of whack, it could really get out of whack. However, it was typically normal… Then, last summer there was an incident.

Summer 2008:

Last summer, after many years of blood pressure that was remarkably normal most of the time, I had finally been put on medication for my blood pressure after an incident where I had what the doctor later called a “high blood pressure headache”. It included visual problems. I was at one of my specialists and mentioned this brutal headache I had been having. At the risk of sounding gross, it literally felt like my eyes were going to pop out of my head.

Anyway, he took my blood pressure and it was 190/121. Hmm. Hypertension normally doesn’t cause symptoms but once you get that high, apparently, it can cause brutal headaches like what I was experiencing. Anyway, he wanted me to go to the emergency room and I wanted no part of it. I had called my primary care physician’s office right after he found this disturbing blood pressure. By now it was the end of the day on a Friday, of course and she too wanted me to go to the ER. Mind you, my blood pressure had been perfectly normal when I’d seen her a few days earlier.

Disclaimer/clarification: I am not suggesting that anyone should disregard their doctors’ advice. My primary care physician’s office was aware that I had no intention of rushing straight to the ER. While they initially suggested that I should do so, we came to an agreement that I would be seen that Friday at either the after hours/urgent care center or at the ER if my blood pressure had not gone down by a certain time. I did not simply disregard their advice and was prepared to hold up my end of the bargain and go in if unable to get my blood pressure down by the time they gave me as the cutoff for the “after hours” clinic on a Friday.

I had zero desire to go to the ER, which last I had heard from a support group member was averaging a 15 hour wait for anything that wasn’t blatantly life-threatening. I know myself well enough to know that waiting around in the ER for 15 hours would have caused my blood pressure to skyrocket. (I can always count on ERs for chemical exposures that set off my multiple chemical sensitivity, painful seats that my body can’t handle with my illnesses, and the opportunity to witness other patients’ pain and suffering in the waiting room… all of which would cause my blood pressure to jump significantly).

Meditating to Tori Amos music:

Tales_of_a_Librarian_TORI PIC

So, I had gone home that Friday, put on my favorite, most relaxing Tori Amos music, stayed perfectly still on my left side stretched out comfortably on the bed, and I meditated. The PCP’s office had given me a “deadline” for getting my blood pressure down to normal. If I didn’t succeed, I was to go to the urgent care before they closed. (They knew I really, really wanted to avoid the ER at all costs). I have never focused so hard on meditating in my life. I did it… it was low enough in time to skip the trip in to be seen Friday night. I took my blood pressure periodically (the only time I moved) and my blood pressure kept getting lower. With the dropping numbers as encouragement, I kept doing all of the above and my blood pressure dropped from its high that day of 190/121 to 130/84 by the deadline for heading out to urgent care, which is 45 minutes away.

Granted, as soon as I got up and around my blood pressure climbed back up some. So I meditated to my Tori music that whole weekend and managed to keep the numbers from getting too unreasonable. This was all about getting through the weekend emergency-room-free. Then I saw my primary care physician the following Monday. That is when I was put on a medication to regulate my blood pressure.

PILLS_sxc.hu_803342_pills_1

I was reluctant to start taking blood pressure medication – knowing that once I was on it my doctors would be unlikely to be willing to discontinue it (and already being on a fair amount of medication). Also, this incident followed a stressful life event that I knew had triggered the spiking. However, I also knew that it was unwise to try to talk my PCP out of the medication (not that anything I could have said would have succeeded). I was already on more medication than I wanted (for other conditions) but I recognized that I couldn’t have my blood pressure spiking the way it was either.

The “high blood pressure headache” had been so severe and so scary that I knew my years of squeaking by without blood pressure medication were probably over (especially given what I knew about family history). So, I started taking medication for it in June of 2008. See post from June 2008 HERE from the time period when I started blood pressure medication.

In the next part of this multi-part post, I will finally reveal why dysautonomia is in the title of these posts. Stay tuned for more information.

This post was written by Jeanne at http://chronichealing.com. Copyright Β© Jeanne β€” chronichealing.com. All rights reserved.


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Reading: Dysautonomia? Part 2

16 comments

1 JulieNo Gravatar { 08.05.09 at 3:59 pm }

Jeanne

Very interesting ….
Can’t believe you cope with all this….it sounds like a complete nightmare for you and all other fellow sufferers..

Julie

2 AvivaNo Gravatar { 08.05.09 at 4:21 pm }

Wow — thank goodness you had the ability/equipment/know-how to monitor your own blood pressure at home!! I can’t imagine a 15-hour wait at the ER either … I guess I’m very fortunate that I live in an area with enough hospitals that we’ve always been seen by a doctor fairly rapidly even though we’ve never really had a life-threatening emergency.

Oh, and I so know what you mean about being reluctant to add yet another medicine to the mix!! I’m always worried about side effects and drug interactions because I’m on the sensitive side when it comes to drugs.
.-= Aviva´s last blog ..Where To Start? =-.

3 JeanneNo Gravatar { 08.05.09 at 5:35 pm }

Julie,

It has been an interesting few weeks. The first 3 weeks were just plain brutal. That’s when I just felt faint so badly. Being unable to get out of bed… It was awful. The weeks since have not been back to “normal for me”… (which is far from “normal for a healthy person”). However, I have been feeling better than I did when this first came on. So, I’m thankful for that. I feel faint when my blood pressure is too low. The trick is that I’m swinging between too low and too high. (Future posts will explain this in more detail). My cardiologist said it’s much easier to treat BP that’s too high or too low than BP that’s spiking up and down. So that is the trick in my case.

As far as others who have any of the various forms of dysautonomia, I honestly don’t know how they do it for years on end because dealing with it for a matter of weeks has been challenging! There were many times I didn’t feel safe to drive, for example. So, my husband had to drive me to the doctor and such. Needless to say, it’s not only inconvenient for him to leave work to drive me around but I’d obviously prefer to be independent. So, I am hoping that this issue will resolve itself. My cardiologist seems to think that this may pass. Time will tell.

Jeanne

4 JeanneNo Gravatar { 08.05.09 at 5:49 pm }

Aviva,

My blood pressure monitor broke last summer. So I didn’t have one for the first 3 weeks (which happened to be the most brutal) of this episode. Once I made the connection between severe head rush upon standing and blood pressure, I went to a grocery store that has a free blood pressure machine by the pharmacy. I suspected my blood pressure was too low. It was. I didn’t even feel faint at the time I took it there and it was the lowest BP I’d ever had.

So I bought a new monitor that day. (Once I saw the low blood pressure, it was easy to justify the cost to replace the monitor I worked to death last summer). Had I taken my blood pressure sooner (in that first 3 weeks), I have no doubt it would have been even lower than the 84/49 that I measured the first day I had the machine. Pretty scary to think that it was even lower… but I am guessing it was.

Yeah, the ER waiting times around here are just terrible. They closed down a hospital a few years back and the remaining hospitals’ emergency rooms have been overwhelmed since. It’s not a good situation. So I try to do anything I possibly can to avoid going there! You are fortunate to live in an area with sufficient hospitals. Nowadays that’s becoming something of a rarity.

Yes, making adjustments to the medication regimen is always tricky. In this case, my cardiologist adjusted the beta blocker I’m already on but even adjustments of existing medications can “rock the boat” for my sensitive body. Yes, I am infamous for side effects, drug allergies, and sensitivities. I hear you. πŸ™‚

Jeanne

5 Jenni Saake - InfertilityMomNo Gravatar { 08.06.09 at 12:31 am }

I’ll be interested to keep reading this series! As soon as I read, “I noticed that the severe head rush which directly preceded feeling faint was often tied timing-wise to having stood up.” I went, ah-ha. This has almost always been a problem for me for as long as I can remember, not something I would think to describe as a “head rush” but the drop in blood pressure upon quick standing (and thus feeling faint) definitely. I didn’t tie that in with your prior post because it’s always been something I’ve done and I’ve never actually passed out. It is not at all uncommon for me to take my first few steps in pitch-blackness, or at least shades or grey, when I get up fast because my blood pressure does drop.
I went through a “tilt table test” probably a dozen years ago and was diagnosed with neurally mediated hypotension, simply a fancy way to say that my brain can’t process my blood pressure the way it should so it often drops when I stand up too quickly. Doing a quick web search I found an article at http://www.geocities.com/hotsprings/spa/4225/neurally.html that I’ve only just skimmed, but looks like it gives the basics. Curious to see if/how any of this ties in with what you will be sharing, but will refrain from doing more searching on Dysautonomia until you have time to explain it for yourself. πŸ™‚
.-= Jenni Saake – InfertilityMom´s last blog ..Happy Birthday to Me, My Gifts to Thee… =-.

6 JeanneNo Gravatar { 08.06.09 at 1:34 am }

Jenni,

I’m glad you are looking forward to the rest of the series! Yes, once I made the connection between the head rush and standing up, I started to hone in on low blood pressure as a possible issue. It took awhile for me to reach that point, though, because I have so many illnesses from which I needed to rule out symptoms.

PCP expected a tilt table test but cardiologist went another route (at least for now). So, we’ll see. The neurally mediated hypotension you mentioned is something I’ve read about in the last few weeks. That link looks good to me.

Well, it’s interesting. In the course of writing this multi-part post, I have come to understand that many issues are tied together (or might be). Dysautonomia is a quite broad topic with many forms of it. So stay tuned and hopefully you will find my remaining posts on dysautonomia to be informative. πŸ™‚

Jeanne

7 ? Teresa ?No Gravatar { 08.06.09 at 3:04 pm }

Hi Jeanne,

Thanks so much for coming by my blog and leaving such a sweet comment of concern. My voice is much better today, thanks!

I can’t believe I found your blog right before you started your series on Dysautonomia. That is amazing! I look forward to reading the whole series but I’m so sorry that you are having to deal with the possibility of having this horrible disease! I am praying that it is NOT what you have.

Well, I will return soon. I hope you are having a ‘good’ day.

Blessings,

Teresa <

http://toomanyheartbeats.blogspot.com/
.-= ? Teresa ?´s last blog ..WORDLESS WEDNESDAY =-.

8 JeanneNo Gravatar { 08.06.09 at 4:45 pm }

Teresa,

I’m glad your voice is getting better! That pill-stuck-in-the-throat incident sounded scary.

That really is amazing that you found my blog when you did! I’ve been blogging for over a year and I’ve never blogged about dysautonomia before now. When I pulled up your blog the other day after your first comment and saw that you write a dysautonomia blog, I couldn’t believe it. If I remember correctly, you found my blog through Alicia’s and didn’t land on it by searching on dysautonomia at all, right? (Alicia and I are “in real life friends”). That is really something that you found my blog right at “dysautonomia time”.

As far as being sorry that I might have dysautonomia, don’t be… It’s not your fault if I do wind up having it. πŸ™‚ I don’t have an official diagnosis. I may have it and I may not. The only thing I know for sure is that a large amount of dysautonomia information “fell in my lap”, so to speak, in the last few weeks and I just felt compelled to write about it. Interestingly, these dysautonomia posts are getting lots of traffic (more than I am accustomed to). I think there are many people suffering with these symptoms. I really hope that something in my posts can help others dealing with these symptoms.

I’m happy to see you back here so soon and I look forward to checking your blog out again soon too. I hope you are having a ‘good’ day too! πŸ™‚

Jeanne

9 ? Teresa ?No Gravatar { 08.07.09 at 10:14 am }

Hi Jean,

I found your blog through Yaya’s blog (I’m not sure of her real first name as I just found her blog a few days ago!) I saw your button over there which had your blog title on it, so I thought I would come take a look and see what it was all about.

I know that a lot of CFS/FMS patients have Dysautonomia and vice versa. I also know that many, many people with Dysautonomia have or develop multiple chemical sensitivity. I’ve never been diagnosed with this but I’m pretty sure I have it. I am highly allergic or sensitive to so many things. I always have been my entire life.

Have you read many posts on my blog? I notice you did not comment on the post on the ones that were specifically about Dysautonomia, that is why I ask. There are a couple I think you might be interested in. Here are the links:

MY ILLNESS EXPLAINED:
http://toomanyheartbeats.blogspot.com/2009/07/document.html

SICK AND TIRED OF BEING SICK AND TIRED
http://toomanyheartbeats.blogspot.com/2009/07/sick-and-tired-of-being-sick-and-tired.html

MY MOST RECENT HOSPITAL STAY
http://toomanyheartbeats.blogspot.com/2009/07/my-most-recent-hospital-stay.html

Those are a few that tell you about what I have had to deal with during the last 2 years with this horrible illness. Some of it may or may not be of interest to you. However, hopefully it will provide a little bit of information for you and help you to have an idea of what to expect when/if you try to seek medical advice/assistance for this disease. It is very, very tricky and I can assure you, sadly, you will probably be much more informed than most medical providers you come in contact with.

IF you should decide to pursue getting evaluated for this disease, I would highly recommend that you ultimately seek to go to Vanderbilt University Medical Center in Nashville, TN. I have been there on numerous occasions and they are outstanding! If you would like more information about them, please feel free to contact me. Also, you can read about their site here:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

OK, off to read the next part in your series. Have a wonderful weekend!

Many Blessings,

Teresa <

http://toomanyheartbeats.blogspot.com/
.-= ? Teresa ? ´s last blog ..HAPPY 15 th BIRTHDAY TO MY BABY GIRL =-.

10 YayaNo Gravatar { 08.08.09 at 9:49 am }

Oh gosh that headache sounds horrible.
.-= Yaya´s last blog ..Friday Fragments/Focus Friday =-.

11 JeanneNo Gravatar { 08.08.09 at 11:33 am }

Alicia,

Yeah, that “high pressure headache” I wrote about in this post was in June 2008 and I’ll never forget it. I had already driven to the doctor (45 minutes away) before the visual disturbances set in and then I was afraid to drive home.

The headache this summer was also very brutal but did not affect my vision or make my eyes feel that way. This summer’s headache was in a very specific area in the front lobe of my head. In retrospect, I believe the headache this summer coincided with the worst of my low blood pressure… right before I finally measured my blood pressure and found it alarmingly low (with very low pulse too).

The two headaches were both brutal but they were different from each other.

Jeanne

12 JeanneNo Gravatar { 08.09.09 at 4:02 am }

Teresa,

I’m sorry for the delay posting your comment and replying… but I wanted to leave comments on your blog posts before posting this reply. I just left you comments on all your links listed here. You posted so much information here that I wanted to do it justice.

Yes, Yaya and Alicia are one and the same. πŸ™‚ I forget that some people don’t know her as Alicia. She and I met locally through the endometriosis support group I started in 2001. Prior to that, I attended endometriosis support group meetings in two other cities I used to live in from 1992-2001. So I attended monthly endometriosis support group meetings religiously from 1992-2008. I am still in touch with the endo group members but we stopped having monthly meetings in 2008. I blogged about the support group HERE. Good to know that people are finding my button on Alicia’s blog. You are the first person to mention it. πŸ™‚

You had mentioned CFS and FMS. Someone (Jenni, I think) had left this link on a blog comment to one of the dysautonomia posts: neurally mediated hypotension (NMH). It talks about chronic fatigue syndrome (M.E.) and fibromyalgia as potentially co-existing conditions to neurally mediated hypotension.

I have multiple chemical sensitivity (MCS). If you think you have have MCS, I cannot recommend this site highly enough:

The Canary Report

It is a fantastic resource!! It explains the difference between being chemical sensitive and multiple chemical sensitivity. (There is a difference). It is jam packed with useful information!

I am very curious about any link between MCS and dysautonomia. Yesterday someone was actually searching on Google for those two terms together and landed on my blog. Do you know of any links to research studies connecting the two?

So I posted comments on all 3 posts you mentioned just now.

Fortunately, my primary care doctor is well familiar with POTS and my cardiologist appointment went OK. I’ll be seeing him again in a few weeks.

I am feeling significantly better than I was for several weeks there. My cardiologist adjusted my beta blocker dose. I was already starting to feel improvement before anything was done but I was glad he adjusted the beta blocker.

I’m glad you’ve found treatment that is helpful for you. I hope they can keep making progress with your symptoms.

I hope you are having a wonderful weekend yourself!

Many blessings to you too,

Jeanne

13 Dysautonomia? Part 3 — ChronicHealing.com { 08.09.09 at 9:50 pm }

[…] 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 haven’t read those […]

14 ? Teresa ?No Gravatar { 08.12.09 at 5:57 pm }

Hi Jeanne~

Whew! I thought I had done something to upset you! I’m so glad that not only did you respond but that you were so very gracious to take the time to respond in such a detailed manner to all the posts on my blog and to my post here! That was very, very thoughtful of you. I really appreciate it! I’m sorry it has taken me a few days to respond back. I haven’t felt well so I have done very little. Plus, I wanted to do your response justice, as well. Now, I will try to address some of your comments and questions.

First of all, thanks so much for explaining who Alicia is. I’m really glad to know that Yaya has a real name! LOL! J/K! I’m totally kidding. I actually like her ‘screen name’. She is just so precious and full of joy! I have her and her husband on my prayer list that I have here sitting beside my chair. I am truly praying that God will fill their arms with a baby to hold and love very, very soon.

When I mentioned CFS/FMS with Dysautonomia, I did so because I have read a lot about it on the 2 Dysautonomia message boards that I am a part of. (Here are the links: http://ndrf.org/eve/forums and http://www.dinet.org/forum.htm ). There are many, many members on these boards who have either had CFS and/or FMS and then developed Dysautonomia or the other way around. There are even some people who have both but aren’t sure which actually came first. It is kind of like the age old ‘chicken or the egg’ question. I know that regardless of which you have and which came first, each one of these illnesses are very difficult to manage individually. Then when you add another on top of it, it can be, and usually is, even more devastating to your life and the lives of your family.

Thank you for the link regarding MCS. I am definitely going to take some time to research this subject more thoroughly. I really do want to know if I am just really ‘chemically sensitive’ or if I have literal ‘multiple chemical sensitivity’. I’ve also read a lot about this on the forums, too, because many people with Dysautonomia struggle with this as well.

I have to say, you are very, very blessed to have a primary care doc who is familiar with POTS. Those are very, very rare! I am very glad that he/she and your cardiologist are taking you and your illness seriously and it sounds like they are starting to do the necessary testing and med adjustments. I must stress that I believe very strongly that you need to have a TILT TABLE TEST ASAP! This is the gold standard when it comes to diagnosing Dysautonomia. You should really have it done while you are OFF all your medications so they can see the ‘real you’, so to speak. I would also recommend confirming that the facility and/or physician performing the test are very knowledgeable about Dysautonomia.

As far as my treatment is concerned, sadly, there hasn’t been anything that has done much to made me feel remarkably better. My heart still races constantly, my blood pressure still stays incredibly low, I still fight being dehydrated and I still pass out quite frequently. I also really struggle with GI issues, including nausea, vomiting, diarrhea and a condition known as GASTROPARESIS. I take a handful of meds several times a day for many of these symptoms. In addition to those meds, I infuse 1 or 2 bags of IV fluids several times a week. This is done because I struggle constantly with being extremely dehydrated, no matter how much fluids I take in orally. This is thought to be partly because I have been found to have chronically low blood volume and low blood plasma. This was found during a special nuclear medicine study done while I was at Vanderbilt. This condition serves to only further aggravate my already very low blood pressure. There are numerous other symptoms that I struggle with on a daily basis but dehydration, pain and syncope are definitely at the top of the list. I’ve also had 2 really serious bouts of sepsis over the last couple of months. It has been a very difficult road.

Well, I need to get caught up on your series so I’m going to go do that. I hope that you are feeling better. Thanks again for taking the time to write me and address my comments. I hope we can work hand in hand to help educate others about this terrible disease called Dysautonomia.

Here are a few links you and others might be interested in that are really great resources:

http://www.dinet.org/
http://www.dinet.org/forum.htm

http://www.ndrf.org/
http://ndrf.org/eve/forums

http://www.butyoudontlooksick.com/
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

http://www.fms-cfsfriends.com/ (FMS-CFS Friends International)

Hope you are having a ‘good’ day!

Blessings,

Teresa <

http://toomanyheartbeats.blogspot.com/
.-= ? Teresa ?´s last blog ..DYSAUTONOMIA – POTS DOCUMENTARY =-.

15 JeanneNo Gravatar { 08.13.09 at 12:36 am }

Hi Teresa,

Oh no… why did you think you’d done something to upset me? I wasn’t that slow posting your comment, was I?? The reason there was a bit of delay in me posting your comment was that you had sent me a number of links and I needed to have time to look at them. I have a tendency to write detailed posts, detailed blog comments, and detailed replies to blog comments. So it takes time. I’m sorry to hear you haven’t felt well! I hope you feel better soon! πŸ™‚

Yes, Alicia is a real, live person (and local friend). She is not just the Yaya that is quickly becoming famous on her remarkably busy blog. πŸ™‚ I like her screen name too but I never use it because I knew her pre-blogging as Alicia and my brain just can’t handle a name change. πŸ™‚ Yes, I hope she and Josh will become parents soon!!! Goodness knows they want desperately to be parents! They will offer a wonderful home to their family-on-the-way… whenever that transpires! The second link you mentioned didn’t work when I clicked it. I then realized the parenthesis and period got caught in the hyperlink. So I edited that so the link will work for readers. Honestly, I don’t normally post blog comments containing links, as a general rule… but I looked at the links you posted and there is some useful information in here that may interest readers.

It’s interesting that there are so many co-existing conditions (or suspected ones) to dysautonomia.

I must have given you information for Susie Collins of The Canary Report. Susie is awesome and her site is absolutely LOADED with info! πŸ™‚ She’s @TheCanaryReport on twitter.

My PCP is wonderful. I am grateful to have her. She and the cardiologist are both definitely taking it seriously. I realize a TTT may still be in my future but I certainly was not about to pressure my cardiologist about it at this juncture. Don’t worry… I can self-advocate with the best of them!! If needed, I know how to apply any needed pressure. Right now, I’m doing much better. Believe me, I’m keeping a close eye on things and I’m not in denial. I know things could backslide at any time.

I’m sorry you have had so much trouble! I may not have a clue what it’s like to suffer the exact way you have but I can empathize. I have 17 diagnoses – and for the endometriosis alone I have had 7 surgeries. So I can use my imagination when I read your posts and get some hint of what it has been like for you. I’m sorry!

Thanks for the detailed comment and I hope you feel better soon! πŸ™‚

Have a ‘good’ day!

Jeanne

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

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

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