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Dysautonomia? Part 5

This is the final (for now anyway!) installment in my series on dysautonomia. I have learned a great deal in the last few weeks from some very thoughtful, caring women who have dealt with their own dysautonomia (or suspected dysautonomia). Read on for more details about my personal experience plus links to women who can lead you to additional resources.

If you haven’t yet read my previous posts Dysautonomia? Parts 1-4, please do so because this post won’t make much sense if you haven’t read them first:

Dysautonomia? Part 1
Dysautonomia? Part 2
Dysautonomia? Part 3
Dysautonomia? Part 4

You can link to previous parts of the dysautonomia series if you have not yet read them, have missed a part, or simply want to refresh your memory.

Part 4 left off with me having seen my primary care physician again and her referring me to the cardiologist, expecting that he’d be ordering a tilt table test to rule out postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia.

TTT_nymc.edu_upright_70_degrees_small

Tilt table test

More information on dysautonomia:

Interestingly, in the same time frame that several people approached me via twitter with information on various forms of dysautonomia… I happened to come across this detailed, helpful post on Endo en Vogue about it: Cardiology and Fatigue: Dysautonomia. (If you haven’t seen this post, I highly recommend it)!

Suddenly it seemed everywhere I turned was another person with information on some form of dysautonomia.

Endo_en_vogue_belly with bandaids

Check out the Endo en Vogue blog here

Her post is a thorough look at dysautonomia and includes resources which you can access by checking out her post.

Cardiology update:

So where am I at now? Well, I saw my cardiologist. I have seen him previously for various reasons.

Initially, years ago, my PCP sent me to him to have a heart murmur checked out. Mitral valve prolapse had been heard too. (Interestingly, sometimes the murmur and MVP are heard in me and sometimes not).

This was a couple years back and I was having dizziness and shortness of breath back then with fatigue (and without the near-fainting symptoms at that point). I had gotten an echocardiogram-stress test. It didn’t go so well. My lung pressure had been high. I was referred to a pulmonary specialist in the critical care unit of a large teaching hospital to rule out pulmonary hypertension.

The wait to get in to see him was nerve-wracking since pulmonary hypertension can, in some cases, be fatal (and can co-exist with Raynaud’s, which I do have).

CPAP_wiki

Example of a typical CPAP mask

The good news was that once I finally saw him, he did not think I had pulmonary hypertension. Instead, he suspected sleep apnea. So he had referred me to the sleep disorder clinic for yet more testing. (I had just had extensive pulmonary testing at his office). Sure enough, the sleep study showed I do have obstructive sleep apnea.

I have blogged about sleep apnea previously HERE. They did two sleep studies on me (one to diagnose, another to fit me for a CPAP mask and measure what airflow I need).

The first sleep study (without CPAP) revealed that I was getting zero restorative sleep. They said I simply wasn’t ever reaching that phase of sleep at all… all night. Hmm. That explained a great deal!

Unfortunately, I have struggled greatly with problems with the CPAP headgear (long story). So I am not using the CPAP machine every night, as I would like. This is something I am working on. It has been a frustrating process.

SCALE_sxc.hu_1186277_weight_scale_

Regular readers may recall me mentioning that in the first 4 months of this year a I lost 36 pounds without trying (just from being sick for some unexplained reason). Well, I have gained 6 pounds back but that means I’m still down 30. I had talked with my PCP about whether she thought I was over medicated with the blood pressure medication, resulting in the “too low” readings. (We hadn’t seen any high readings yet. All normal and low). While she certainly saw my point and agreed the weight loss could have thrown my body off with medication/dosage, she still seemed to expect I’d get the tilt table test.

BLOODPRESSURE_SXU.HU_909106_-_beep_beep_-

When I first started publishing posts from this series, a comment was left by someone who noted that she found my blog through Alicia’s Yaya Stuff blog. Imagine my surprise when I pulled up her blog to find it is about dysautonomia! She has since informed me that she happened to find my blog right before I first posted about dysautonomia. Isn’t that something?

Dysautonomia_blog_Too Many Heartbeats_HEART

Check out Teresa’s blog, Too Many Heartbeats. Teresa shares her personal experience with dysautonomia. She has been through some very difficult experiences and I highly recommend checking out her site.

Contrary to my PCP’s thought that the cardiologist would order a tilt table test, the cardiologist seemed quite fixated on the weight loss factor and wanted to reduce my dose on the beta blocker I use for the blood pressure. As he pointed out, it’s far easier to treat high blood pressure or low blood pressure than BP that’s spiking wildly up and down (like mine). However, he felt the next best course of action would be to lower my dose of that. (I have no objections to that. I actually would have been happy to try that sooner).

It is striking to me how many women have both endometriosis and dysautonomia.

I would like to thank Aviva for extensive exchange of messages on twitter, sharing her own dysautonomia experience, and promoting this series on twitter… thus increasing awareness about dysautonomia.

If you are interested in promoting the dysautonomia cause and/or connecting with fellow patients, these hashtags have been in use on twitter:

#POTS (postural orthostatic tachycardia syndrome)
#dysautonomia (for the “umbrella category”)
#NCS (neurocardiogenic syncope)
#syncope (which means fainting)

I have heard from women with the various forms of dysautonomia mentioned above. I also know that Endochick has mitral valve prolapse dysautonomia but I have not seen a hashtag used for that specifically.

I would like to express my gratitude to the many women who have been so supportive of me these last few weeks dealing with symptoms like dizziness, lightheadedness, and feeling faint (plus the at times frightening blood pressure and pulse issues associated with these symptoms). I am thankful for all of the information that has come my way. There are so many caring people reaching out to support others going through similar circumstances.

So, for now, I have “escaped” the TTT and we’ll see what happens. The last couple of weeks (including slightly before the beta blocker dosage change) have been better than that first few weeks or so, starting back in June. The cardiologist said these types of things sometimes pass. So, right now I’m just hoping things will keep going well!

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


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Reading: Dysautonomia? Part 5

13 comments

1 ? Teresa ?No Gravatar { 08.12.09 at 6:16 pm }

Wow, thanks for posting about my blog! That was really nice! I have just left you a long message on your Part 2, where we were having our discussion before. I’m sorry it took me so long to get back to you. I haven’t been feeling well and I wanted to address it properly. I still didn’t respond as well as I wanted to but I didn’t want you to think I was ignoring you.

I hope the blood pressure med change works for you but if it doesn’t, I hope they don’t put off the TTT too long. Don’t be afraid to aggravate them about it! :0)

Blessings,

Teresa <

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

2 YayaNo Gravatar { 08.12.09 at 7:15 pm }

Wow. I didn’t even realize you had sleep tests done. I really hope you are feeling much better very soon.
.-= Yaya´s last blog ..Why I’m A B^tch =-.

3 JeanneNo Gravatar { 08.12.09 at 10:34 pm }

Alicia,

It has been awhile now since I had the tests done. I can barely keep up with all my tests, procedures, and surgeries. So I certainly wouldn’t expect you to be aware of everything. 🙂 I just wish I could get the headgear to work properly because the pulmonary specialist said using it will help all my conditions. You have no idea what I have gone through with my CPAP headgear. 🙁 I could write a series on CPAP headgear very easily…

Jeanne

4 JeanneNo Gravatar { 08.13.09 at 12:49 am }

Teresa,

My pleasure. Just posted your long message on Part 2 and my reply to it. Please don’t apologize. Anyone who is chronically ill understands time is affected by limitations and such. Sorry you haven’t been feeling well. 🙁 I appreciate the time you took to post such detail. I would not think you were ignoring me.

I hope so too. Don’t worry. I can “aggravate” doctors when needed with the best of them. I want to give them a chance to address it. I have found in 27 years of being chronically ill that doctors really don’t like to be told what to do. (I save that for emergencies). 🙂

Sending positive thoughts your way!

Jeanne

5 EndochickNo Gravatar { 08.13.09 at 2:20 pm }

There are things that aggravate my dysautonomia – stress, exhaustion, too much caffeine, dehydration… the list is pretty long. I’ve had a long time living with this disease to learn to learn to adjust to it. I call my in between periods the “calm between the storms”.

I hope you never need the TTT and it was just a medication problem.
.-= Endochick´s last blog ..Dysautonomia: Making Life Crazy One Day @ A Time =-.

6 JeanneNo Gravatar { 08.13.09 at 4:29 pm }

Endochick,

With what I have heard about the tilt table test, I am hoping to avoid it too. I definitely feel better than I did a couple of weeks ago. Why that is… I don’t know for sure. I had already started feeling better before the dosage change on the beta blocker. So I guess I’ll just have to wait and see.

I’m sorry you’ve had to deal with symptoms for so long (!) but I’m glad you know the triggers to be aware of for you.

Jeanne

7 ElizabethNo Gravatar { 08.13.09 at 5:18 pm }

I’ve also had a sleep study that showed that I wasn’t hitting the deep restorative sleep which my neuro had suspected for awhile because I wasn’t getting anywhere – nor still am – with my chronic daily intractable migraine. Mine I had in June and it didn’t show sleep apnea but a form of narcolepsy. I was having “sleep paralysis with hallucinations” which along with the migraines also caused no restful sleep even though I was sleeping a lot.
I also found “Too Many Heartbeats” the other day and enjoyed her website/blog.
Well, I just wanted to say that this is a great blog – all parts – and thanks for putting it up there. A lot of us (me with #NCS) feel alone and it’s good to know we’re not – although I hate that so many people suffer through this. I seem to put it as second class or third class behind my migraines and hypothyroidism as a health issue. With others in there as well and at the bottom of the rank – my familial tremor which can actually be quite irritating at times.

Thanks, Jeanne

Elizabeth
.-= Elizabeth´s last blog ..Top 5 Most Embarrassing Public Fainting Episodes – Vasovagal Syncope =-.

8 AllisonNo Gravatar { 08.13.09 at 9:24 pm }

This has been a truly interesting series! Thanks for blogging about this Jeanne!
.-= Allison´s last blog ..Thank you! =-.

9 JeanneNo Gravatar { 08.14.09 at 3:16 am }

Elizabeth,

I’m so sorry about all of your migraine problems. 🙁 I am also sorry to hear you’re not getting restful sleep.

Yes, Teresa (Too Many Heartbeats) is very nice.

Thank you. I’m glad you like it. It’s nice to not feel alone. At the same time, like you said, it’s unfortunate that so many people are suffering. Yes, when there are multiple chronic conditions… it’s not unusual to “rank” them by their impact on us (what affects us most to what affects us least, for example).

Thank you, Elizabeth.

Jeanne

10 JeanneNo Gravatar { 08.14.09 at 3:17 am }

Allison,

Thank you! 🙂

Jeanne

11 Dysautonomia Series Re-post — ChronicHealing.com { 12.17.09 at 3:19 pm }

[…] The ‘Chronic Healing’ Dysautonomia Series […]

12 SissyNo Gravatar { 04.17.11 at 3:18 pm }

My daughter was diagnosed with Dysautonomia over 2 years ago.
Last month my dad met an endocrinologist who finished a 5 year study at University of Texas. He had my 19-year-old daughter’s pituitary gland tested with a STIM TEST. The test came back as pituitary damage and so she is HGH deficient. She has been on HGH for one month and the change is huge. The endocrinologist said it takes 3 months to feel the full better but she can feel the difference. My daughter was so bad off, she had to withdraw from college and could not be left alone. She had psuedoseizures, fainting and migraines. I felt like I was watching her deteriorate. I am on a mission to get the word out. It has been life changing! She will have HGH shots the rest of her life but so what !!! IT has given her life back.

13 JeanneNo Gravatar { 04.17.11 at 10:35 pm }

Welcome Sissy!

I’m sorry she had to go through withdrawing from college and not being able to be left alone. That must have been stressful and frightening for her and the entire family. I am happy to hear that your daughter is feeling so much better. That’s wonderful! I hope that she will continue to feel the improvements you mentioned. Thank you for your feedback.

Jeanne

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