New Member- Please I need help

[Asmaa]

Hi Everyone,

I'm pretty sure I have Dysautonomia. And I cant get help from doctors. Can someone please help me make sense of my symptoms? 

Had symptoms for last 11 months 43 year old female.

- Heart rate increase when standing

- sometimes my heart rate is fast even when I am lying down. It can happen randomly throughout the week

-dizziness and nausea

-loss of sensation in fingers, hands and arms

-increased anxiety and agitation

-I have very low blood pressure when sitting but it goes up when I stand.

- increase heart rate after eating/ weight loss

-wrinkled fingers

-extremely loud tinnitus

This is destroying my life. I suspect may have Dysautonomia or POTS but I dont know which type.

Can anyone please give me some insight?

Please help - Asma

[Pistol]

Hello @Asmaa I am sorry you are having all of these symptoms! Certainly they CAN be caused by dysautonomia. In order to get an accurate diagnosis I would first make an appointment with a cardiologist to schedule a Tilt Table Test ( TTT ). Then I would get a BP measuring devise and check BP and HR 3 times a day and when symptomatic, and keep a diary of the numbers, as well as your symptoms. The best way to help your physician understand what you are experiencing is by keeping a log. That also may help you find what triggers your symptoms. 

If you suspect dysautonomia you can do what most of us have to: increase salt and water intake, wear compression hose and avoid standing for long periods of time. You can also do what we call a "Poor mans Tilt test" - measure your HR and BP when lying, sitting and then standing. Here is a link on how to do this 

https://www.cdc.gov/steadi/pdf/Measuring_Orthostatic_Blood_Pressure-print.pdf

For a POTS diagnosis the HR would increase 30 mmHg or more within the first 5 minutes of being upright without returning to normal, and without a significant drop in BP. 

I hope this helps. The best thing you can do at this point is research your symptoms and be prepared for your visit to the doctor. Check the information tab at the top of our website and click on POTS, you will find many valuable articles that can help you prepare for that visit. Hang in there, you are not alone, and there are many people here that went through what you are experiencing now. Best wishes!

 

[Sarah Tee]

@Asmaa, can I ask where you live? It’s important that you see an autonomic specialist to get your symptoms checked out. If you can tell us which country or region you live in, we may be able to help.

If there aren’t any dysautonomia specialists where you live, a neurologist may be able to investigate the loss of sensation in your hands and arms.

[Asmaa]

Thank you both Pistol and Sarah for replying. I plan on purchasing a BP machine.

I live in Sydney Australia. I contacted Dr Judith Spies room but was told she only accepts referrals from a specialist and not a GP and the wait is 12 months. Any recommendations?

[Sarah Tee]

@Asmaa, I live near Melbourne!

I think there will be some other doctors apart from Dr Spies who will be able to help you in Sydney.

I am afraid that autonomic specialists are not plentiful in Australia so there may be a wait. Wait times are longer in the public system so if you can go private that might help.

I would suggest joining this Facebook group:

https://www.facebook.com/groups/270234122634/

It has a list of specialists that you can download (see the “Files” tab at the top of the group page once you are added as a member). You can also make a post asking for suggestions, or search the keyword “Sydney” to see recent posts.

If you don’t have a Facebook account, may I suggest you create one just to access this group. (You can always close it later.)

In the meantime, if you have a way to measure your blood pressure and heart rate at home, I would suggest doing a NASA lean test. (A Google search will bring up instructions.) This will give you an idea of whether you have POTS or not. (POTS is one kind of dysautonomia – there are other types.)

If the NASA lean test indicates POTS, you can show the results to your GP and ask them to replicate it in an appointment. (Sometimes the practice nurse will do this test.) Make sure they do it correctly.

Also, start keeping a log of your symptoms, blood pressure, heart rate, and anything else that seems relevant, such as meals, activities, hot or cold weather, period (if relevant). Try taking your BP and HR regularly every morning and night as well as recording them when you have an episode.

You don’t need a fancy monitor – an Omron cuff will do fine.

[Sarah Tee]

One more question – you mentioned weight loss. Have you recently lost a large amount of weight?

[Asmaa]

Thanks Sarah,

My weightloss is due to me not being able to eat so many foods or large meals. Large meals and plenty of foods seem to make things worse. I eat mostly protein and vegies and fruit. 

I ordered a BP machine. I know i have some sort of dysautonomia but probably not POTS. My heart rate is extremely random not just on standing up. Like right now i am sitting in bed and its over 100bpm.

Ill join the facbook group you suggested. Can we stay in contact? It would be nice to have contact with someone who understands.

[MaineDoug]

Hi Asmaa,

WELCOME! You are in the right place to search for answers. Ditto to all above. I’ll add two things:

1. DON’T lose hope! If you do have Dysautonomia, the symptoms and the disease are “crazy”. High BP, low BP, fast Pulse, slow pulse, hot and cold, crazy symptoms in all kinds of places! It’s all real but the symptoms and ill informed professionals can make you feel like it’s “in your head”, no matter how objective your symptoms are. You can and will feel much better with appropriate treatment for your individual condition. Realize that it may get worse before it gets better, don’t give up! I was bedridden for 9 months, but can do much more now!

2. SEARCH DILIGENTLY for providers who are familiar with dysautonomia, have specialized training, and have experience in dealing with the condition. THIS WAS KEY FOR ME. I live in rural Maine and the providers had no clue. I saw 5 cardiologists and 3 neurologists and they all missed the diagnosis, even though my case, symptoms and signs were all textbook. My wise PCP, told me to seek care at a Medical Center affiliated with a Medical University in a big city. Now I drive 10 hours to New York City, and have docs at Columbia Medical Center and the Hospital for Special Surgery. It took the Columbia doc 1 minute to diagnose me! Heading back down Sunday for more care/evaluations. Luckily my mom lives locally so I can visit/stay there. 

Before my diagnosis I was bedridden, desperate, and felt like I was “swirling the drain”. It took 5 years, becoming fully disabled and lots of patient empowerment BUT my life is soooo much better than it was just a month ago.

Good luck, and keep reading, researching, and asking questions. You’re off to a good start!

Sincerely,

Doug

[MaineDoug]

On 6/24/2023 at 7:01 AM, Pistol said:

increase salt and water intake, wear compression hose and avoid standing for long periods of time.

This is part of what turned me around. After hearing the words “Refer to Neuro for workup of suspected Dysautonomia/POTS” from my Columbia Endocrinologist I did my research. I’d been telling docs for years about constant thirst and salt craving. I increased my intake, while waiting for the Neuro appointment and my condition stabilized and improved markedly! Amazing! But I’m not talking about a couple glasses of water. My personal hydration “number” is 240 ounces/day and 10 grams of salt! I have to drink constantly all day, but it’s soooooo worth it! 

[Sarah Tee]

@Asmaa, sure! I visit this group regularly. Let us know how you are going and feel free to ask questions or ask for support.

I was asking about the weight loss because major weight loss (such as after bariatric surgery) has been linked to POTS.

But the kind of weight loss you describe is also common. The autonomic nervous system controls our digestion, so that can be one source of problems eating. The other problem is that, when we eat, our body redirects a large amount of blood to the abdomen to digest the food. This diversion to the abdomen means less blood to the brain and that can cause presyncope or syncope.

Smaller meals can help with this, as it sounds like you’ve already discovered.

There are other kinds of dysautonomia apart from POTS that cause tachycardia (racing heart). However, there are also other conditions (not autonomic) that can cause tachycardia so hopefully your doctors will check thoroughly for all possible causes.

Random bursts of tachycardia could indicate a condition called inappropriate sinus tachycardia (IST).

I don’t actually get tachycardia, but I am sure other folks who do will chime in.

Have you seen a neurologist about the loss of sensation in your hands and arms? I feel like this should be looked at pretty urgently. 

[Asmaa]

@MaineDoug Thank you so much for your feedback. Its really great to read about people getting better.

My suspected POTS/dysautonmia started a few months after I got Covid. I seemed fine and then i just crashed. I got very bad GI symtpoms and neuro symptoms and racing heart and palpitations.

Im currently looking for a good neurologist in Sydney. Ill keep you updated.

Regards

Asma