The effects of Dysautonomia/POTS and Menopause

[Kaceysmom]

Does anyone know of a dysautonomia specialist in the Phoenix, Arizona, area?  I'm fairly certain that's what's been causing a lot of problems/episodes for me during the past year.  I've seen a neurologist who just wanted to put me on a daily medicine to treat my migraines, instead of trying to determine what's causing the migraines.  I'm now seeing a cardiologist who I've known for 6-7 years and he's wonderful.  My next appointment with him is in April.  But I just stumbled onto the idea of dysautonomia this past week (I appear to have several symptoms), and I'm not sure yet if he's very familiar with the disorder.  I, of course, will be discussing it with him as soon as possible.  But I'd like to be as proactive as I can and get to a specialist if there's one reasonably nearby.

I'm so happy to have found this forum!

[Pistol]

@Kaceysmom Welcome to this forum! I hope you will find answers to some of your questions here, there are many people here that are affected by dysautonomia and can share their knowledge and stories. 

Have you checked our physicians list under the physician tab on the top of the main page? It lists providers that specialize in autonomic disorders, there might be someone near you? 

[Kaceysmom]

@Pistol, hello, and thank you!  I did find out to search for physicians after I posted my first message, and found three in my area.  I'm going to do a little more research on each of them but I expect I'll be book an appointment soon.

Thanks so much!

[Bergbrow]

On 8/2/2022 at 10:05 AM, SCBELTS said:

suddenly began to have what I would describe as vaso-vagal episodes in the middle of the night. I would need to wake up to use bathroom ( urinate) but upon standing, have an urgent feeling that I needed to move my bowels or vomit or both. By the time I would get to bathroom adjacent to my room, I would hear buzzing, become extremely dizzy and  then collapse on the floor  and shake terribly in a semiconscious state on the floor. My husband would awake,  and after about a dozen episodes, he figured out that pumping the blood in my lowers legs and then my arms, would help bring me out of it.  Sometimes it took many minutes of this to get thru an episode. I went to ER at least 5 times, but they would hydrate me and just send me home.

Oftentimes I’ve been told by multiple neurologists that what you described just doesn’t happen like that.  But what you described is almost exactly what happens to me too.  The only difference is that I’m completely unconscious no shaking but my husband also experienced the horror and fear of bringing me back multiple times too.  Same thing, I’m asleep, feel very wrong, very awful and strange, I get up slowly thinking I need to vomit or pee or bowel movement or all of the above. Get out of bed to go to the bathroom take 2 steps, buzzing, splotches and then pass out, hit the floor.  The thud wakes up my husband(the time between splotches and oh crap I need to find a soft surface is too short). Turns out I didn’t need the bathroom at all since no evacuations occurred while I was passed out.
So when this actually happens to both you and I (I’m sure others), and doctors say that’s not possible, then the manner of care we get is crap. They cannot accept that the pre-syncopal feeling occurs while laying down and it’s that awful feeling that makes us get out of bed then pass out.  When I see a new doc that can’t even accept my syncopal episodes, I know to move on because that’s only 1 symptom in my list of multiple dysautonomia symptoms that must be addressed. 


 

[AnotherZebra]

Hello! My story is like most, lengthy! The shortened version is……

My father as long as I can remember always had issues that no doctor could ever explain. He was born in 1943 and we have always lived in a rural area with no close Specialized hospitals. As I became older, I noticed myself, brother and sister seemed to be developing issues like my dad. 
when he had a really debilitating issue, I decided to dive head first into all of the years and years of his medical records. I then cross referenced them with his side of the family medical issues, and then myself, brother and sister. Then onto my daughter, niece and nephew. I was on a mission to finally figure everything out! 
I went to my primary care doctor with 75 pages of my family medical history and how it correlated to my findings. After an hour visit, pleading my case, she scuffed and said she would order all the tests. However, when they all come back negative she wanted me to stop being so driven to “find” something. People age. 
7 months later the last of the results were in. I had nailed everything! We finally had answers! Sadly, it was not soon enough for my dad. He had a 2 back to back massive strokes and passed. I beat myself up everyday for not doing my nose dive sooner! 
The main diagnosis is

Ehler’s Danlos hyper mobility with vascular traits (Genetic testing $3,500 out of pocket)

This also causes Dysautonomia (Hospital work up with 4 day stay monitors and labs like crazy) with POTS (Tilt Table Test), Mitro Valve Prolapse and Murmur (ultrasound), Mast Cell Activation (breaking out from several things while in hospital)

All of my diagnosis with chronic migraines, chronic fatigue, insomnia, irritable bowel, anxiety, slow pupil dilation, lots of floaters in eyes leading to constant pressure checks, slow healing wounds, hands and feet turning blue, having heat intolerance, unable to control my body temp, nails full of ridges, needing more medication than most for the item being treated, easy bruising, and the list goes on and on!!!! Which I am sure most of you can relate!

Now, what lead me to this page is, I have been in menopause since age 45 (now 52). These last few years have been more intense in my hot/cold episodes. Once again I begged my doctor to do a hormone check. She said she didn’t think I was post (maybe pre) menopausal. Test came back I am that of a 70 year old she stated sounding shocked.  
She put me in for a referral to a gynecologist for hormone therapy. They have no appointments till first of October. 
And at last, here I am at 3:59 am nose diving to find my tribe once again! Is there anyone else in this forum diagnosed with Ehler’s Danlos and if so would you mind sharing what is working for you?  I literally can not sleep for days. I am either pouring sweat or freezing cold, never comfortable. Walking from the car to the doctor office I need a change of clothes due to sweating. I have zero sex drive. I have zero energy. 
Thank you for reading this! It is therapeutic reading your stories. I thank each of you for being brave and telling your stories so others like me can the help we need!

Hugs to all!

 

[MomtoGiuliana]

Welcome to the forum.  

I'm sorry about the loss of your dad and that he experienced so many disabling symptoms without answers.

It may be hard to separate what is being caused by EDS and what by menopause. 

I haven't been diagnosed with EDS (although may have it, never had testing done) but I am experiencing menopausal symptoms (I'm 54).  For some women POTS symptoms improve with menopause and I think that has been the case for me.  I do have temperature regulation problems when in a POTS flare (can be either freezing or overheated, frequently) but I am also experiencing this now with menopause--although it's generally only at night--after sleeping for awhile--I can wake up feeling hot.  My menopause symptoms are otherwise mild so far anyway.  Hope your gynecologist can be helpful.

[Sarah Tee]

Urgh, I am not looking forward to menopause. Nothing else in my life has affected my symptoms, so I’m guessing mine is going to be added on top.

[MomtoGiuliana]

@Sarah Tee--it may or may not be that bad.  And there are medical solutions that can help.  For me perimenopause was the worst--bc of irregular and heavy and long lasting periods.  And I think bc my hormonal state was in so much disarray and flux my POTS symptoms were about the worst ever, during perimenopause.  I actually in some ways feel the best I have felt for years.