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!

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. 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. 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! 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!

Have a ‘good’ day!

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

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. 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.

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

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

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

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. 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!

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