How do you cope with symptoms?

[Iheartfrogs217]

Hi all, I hope you are well! I just came on to vent about my current symptoms and wanted to know how you all cope with symptoms. Thanks in advance for taking the time to read/listen!  Lately, I have been experiencing bradycardia, low blood pressure, palpitations, and near fainting while laying down. I have a doctors appointment in two days and I hope they can come up with some solutions. I ended up in the ER last night because of how bad things got. I can't help but feel anxious all of the time about my new symptoms and have been getting pretty severe panic attacks because of them. I also haven't been able to sleep because of how horrible I feel (that's why I'm still on here at 2 AM). I'm only 21, but feel like I'm over 100! Do you have any suggestions on how to stop feeling panicked about horrible dysautonomia symptoms? Thanks again!

[Pistol]

Hi @Iheartfrogs217 - I am sorry you are having a bad time. Sounds like the weather is playing tricks on you? Heat makes everything worse and the low BP is common. I HATE summer - I have to stay inside all day because even 5 minutes outside result in a hefty faint. Although we live in the country surrounded by mountains, fields and woods I can only enjoy them from inside. But I can still enjoy the birds chattering away and the creek trickling … Don't be afraid - the symptoms of POTS are enough to panic anyone but be assured that it will get better. Whenever I am in a flare like that I get disheartened because I am afraid I will stay that unstable and miserable for ever. But by now I have learned that they come and go, so I try to hydrate, rest and salt-load and wait it out. I am very familiar with the panic you describe and when it hits I sit down, close my eyes, take slow and deep breaths and imagine that with every breath I suck in strength and calm from the ground into my body … it may sound weird but it helps. -- Are you on any meds for your POTS? Often in the summer people need less BP meds due to the heat, check with your doc ( if you take any ). My sister has also POTS and recently she had to adjust her beta blocker due to low BP from the heat. When things cool down she will go back up. --- Don't worry - it will all be OK. The good thing is that POTS is ever-changing, so when your bad it WILL get better. Best of luck - take time to find the things everyday that make life beautiful!!!

[StayAtHomeMom]

I second what pistol said. I haven't had your symptoms my stuff is usually the opposite but keeping calm helps a lot. One of my friends always says for almost anything my body does, "that's because your body is broken." It is a running joke with us because that is kind of what it feels like. My body reacts weird.

My only suggestion I can give is if you feel so awful lying down try standing. Safely of course but standing could raise your blood pressure, your HR, and may be exhausting enough to help you sleep. Nothing strenuous and please be careful!! It just seems like sometimes I need to get up and just stand for a few minutes then sit back down and I feel a little better. 

Good luck! And stay calm and positive. On here we share your pain and triumphs. We have all gone through the lows and celebrate the highs. 

[Bluebonnet08]

I only ever had bradycardia after I gave birth.  My cardiologist thought it was because of the fluid shifts... he advised getting 3 IVs a week until the bradycardia stabilized.  It worked and I am not having the bradycardia anymore.  Maybe you could try it.  I got the iVs at a Hydration Clinic.

[clicky77]

🦓 I have been quite stable for a while as I have not been exerting myself much. Recently I was up in my wheelchair for 2 hours compared to 10 mins my usual and have not been well since, the following day I woke with ❤️tachycardia that just came out the blue and was scary as I had chest pain/heaviness, numbness and pins and needles and I was so scared as I thought I was having a heart attack or stroke. Every time I got up blood would pool in legs and feet leaving my tachy, dizzy and short of breath. I had to use a bed pan as it was making me feel so rough getting up to use toilet. Nearly 3 weeks down the line I am still not right and this weather is making things a lot worse, I am bedbound making sure I get enough fluids and have my bed elevated all what I have been told from the Autonomic nurses. I had lots of blood taken💉 to see if any infection present, but all ok. Waiting form urgent appointment with my Neurologist. I am so fed up with these symptoms and scared at times even though I use distraction techniques. 😩

[Potsie1990]

Hi love,

not sure I can add much advice but what I do is keep my essential oils in hand. When I’m having an episode and feel short of breath and nauseous, I put a little peppermint oil in my between my hands, rub them together and then cup my mouth and nose and take a deep breath. The chill and fragrance help “bring you down” and it’s an invigorating way to calm your breathing. It helps with nausea if you get that as well. Honestly, it sucks so bad but there’s really no choice but to ride it out. A cold wet cloth on the forehead and a fan will help cool and calm your body down. I even carry a bottle of facial mist and spritz it on my face during an episode. I have a ritual, and  it’s all non invasive and helps it go by a little smoother. Maybe sip on some ice cold water too if you can. That will help with your body freaking out. 

[Iheartfrogs217]

Hi all! I am so sorry for my delayed response! I just want to say thank you all so much for sharing your tips and tricks. Your support and advice means more than words can say! 

@Pistol I think it is the weather. It really seems like anytime the temperatures are in the high 80's or 90's I feel like I'm going to pass out constantly even though I stay indoors all day. Glad to know that someone knows what I'm talking about, but sad to hear that you go through it as well. You have an incredible outlook and I admire your positivity.  I'm not on any meds at this point, but am getting IV fluids twice a week. Those seem to help quite a bit. 

@Potsie1990 Where do you get your essential oils from/which brand do you use? I'd love to try some, but am looking for recommendations for good brands. Thanks in advance! 

[statesof]

For me I find that each symptom presents its own physical difficulty and so I might have to cope with them differently. I think the hardest thing is when my body is telling me it can't do anymore and I just have to listen to it on those days and do almost nothing actively.

- For chest pains: take an aspirine, take a second verapamil and if its still bad maybe take a xanax. I'll also rest part of the day in bed if necessary.

- Migraines: these take me about 5-6 days to feel normal again so I limit all my physical exertion, eat a lot and try and sleep as much as possible.

- Normal day and challenges: I try to limit how much I walk, and try and do exercise everyday in the way that I can, and meditate every morning.

[Lily]

On 7/5/2018 at 3:09 AM, Iheartfrogs217 said:

Do you have any suggestions on how to stop feeling panicked about horrible dysautonomia symptoms? Thanks again!

Use your reasoning here to calm your emotions.  Your body is malfunctioning, but it can be treated.  You have a plan to deal with it medically (doctor's appointment), and you will commit to doctor roulette for as long as necessary to get it diagnosed correctly.  About 25% of Potsies can live completely normal lives, and 50% can live mostly normal lives.  You are therefore very likely to be somewhere within that 75% who improve with treatment.  

[Potsie1990]

Hi dear, sorry for the late response. I often use the Now brand from amazon. Their prices are great, and they are very consistent with the aroma. With dottera, you can order the same blend every time and it will smell different every time. 

Before you rub it on your skin, make sure you test a small area with a carrier oil. I don’t get a reaction when I use it straight but some do if you have super sensitive skin. You can buy amber glass dropper bottles on amazon too and make your own blends.