How Could This Not Kill Me?

[sleepy_lady]

I've been away for awhile. I'm stuck laying on my side. I can't even scoot or roll over in bed without my pulse jumping up to 100. My heart is skipping beats. I can't even crawl now. I've been peeing in a mason jar. Just three days ago, I was mostly propped up. Salt hasnt helped, nothing has. I feel like I'm dying. This can't be pots. I want to know that everything is gonna be okay and I'll recover. But it's been almost 6 months. I don't know what to do.

[Always hoping]

I'm sorry you are feeling so bad Sleepy lady and I hope you find some relief soon.

[sleepy_lady]

I Just don't know what to do... I started my period this morning. Is that it? Is this normal?? I'm so scared and confused because I don't know how to beat this and it's beating me

[Annie]

I'm so very sorry, sleepy_lady, and hope things begin to look up for you soon. If it's any comfort at all, just know you're not alone. Take care.

[gjensen]

Sleepy Lady, I now that feeling. I do not know your situation but I can relate with how you feel.

Do you have a doctor that you feel good about. How are you being treated?

I have come to the conclusion that managing this illness is about a series of small victories.

I do not have any practical experience with the monthly thing, other than living with it. LOL. I see that the ladies comment on it.

Try not to let it beat you down. When it gets too me, it all just gets worse. I end up in some sort of sympathetic overdrive. Everything becomes exaggerated. X2.

I wish that I had answers an could make it go away.

[sleepy_lady]

I did just go to my cardiologyst 3 days ago, it was very stressful. They had to put two bags of saline in me for low blood pressure and it still didn't get right. My fingernails also started turning blue. Why though? Blue fingernails isn't pots. Yet they think I have pots and they sent me to the ER to get blood drawn for testing. I just don't know what to do or how to feel. Ugh.

[sleepy_lady]

BLOOD PRESSURE IS 105/49 IS THIS OKAY??!!!!????

[stephsurf]

BLOOD PRESSURE IS 105/49 IS THIS OKAY??!!!!????

Your diastolic is just a little on the low side, try and increase your fluids if you can. It is completley normal if your having a potsy flare!

[sleepy_lady]

When would I need to worry tho? I feel really bad physically...

[xRobin]

Wow, sorry you're so scared!

When I first got POTS it was terrifying. I, too, felt afraid a lot that I was in some type of emergency situation. The important thing is to work with your doctors because they know your test results and are better suited to give you criteria for when to worry and when not to worry. A lot of physicians will have on-call service so if you're frightened you can check in with a doctor and they can tell if you if you need to been seen right away.

If you're getting your period you might be shedding some fluid which would affect your blood volume, and might cause more symptoms. Upping your fluid (and electrolyte) intake might help you feel a little better.

Are you on any meds? Usually the first line is a beta blocker and florinef. The first will slow down your racing heart, and the second will help you retain fluids and increase your blood pressure. Some people do well with these but others go on to try different medications.

Remember, if you have POTS your tachycardia is positional. Meaning that your body doesn't compensate properly for changes in posture. So, having a burst of tachycardia when you roll over makes sense. PVCs (skipped beats) are also pretty common and my cardiologist thinks they're a result of overactive ANS.

And, anxiety can very much be part of POTS too!

No one can really give you a firm predictor of your outcome. Most of us are trying to manage our symptoms and hoping for the best. But I totally understand how it feels to be scared.

[Katybug]

Regarding the blue fingernails, iv fluids are often kept at room temp which is lower than body temp. I always feel cold while they're pumping them into me. However, if your hands were cold and your fingertips/nails turned blue, this could be a sign of Raynaud's Syndrome. It is a circulation issue that affects mostly people's hands and feet. Although any sort of doc could technically diagnose this , a rheumatologist would be the type of specialist that is an expert on the subject. It is not uncommon to hear of people in the POTS or EDS community that also have Raynaud's. If you do a Google search you should be able to find plenty of info on it if you think it's worth checking it out and speaking to a doctor about it.

I was terrified when all of my POTS/EDS/MCAS issues started. I have lots of neurologic issues and I was convinced that I had something deadly that the doctors weren't looking for because they weren't taking me seriously enough. Then I found one really great doc who acknowledged that she could see how sick I was and didn't know what was wrong but was going to figure it out and help me. From there we also found the other specialists I needed. I'm not in perfect shape now....I have ebbs and tides with my symptoms that leave me in various states of functionality. But, I am better than where I was and I know I have a team of docs that are always actively working to control my symptoms. There was a lot of trial and error but both the docs and I work hard at managing my care. One thing that my POTS specialist reminds me of frequently is that there is a lot of anecdotal info amongst the docs that we tend to have hypersensitive nerves, so we feel everything that happens to our bodies much more acutely than the average person. This does not help in the way of being able to adjust to these weird things our bodies now do. But knowing this helped me be able to wrap my head around everything I was feeling physically a little better. Hang in there. It will get better.

[sue1234]

sleep_lady, have they tested you for Addison's disease? I would think since your symptoms are so severe, it would be good to make sure your cortisol is normal!! In fact, it would be crucial to know, because if you are low in cortisol, your body cannot handle life stressors, physical and/or emotional. You mentioned going to your doctor a few days ago was really stressful, and your body may have not recovered if it is a cortisol issue. Do you know if that is one of the tests they ran in the ER?

[sleepy_lady]

I don't. the symptoms do match, though. Ugh this is all too much to handle, really.

[sue1234]

Ask your doctor to test your morning cortisol(possibly even anytime during the day at this bad point). I would think he would do it just to make sure all the bases are covered. If there is ANY indication it is kind of low, they should do a Cortrosyn stimulation test. This makes sure your body reacts appropriately to stress. Do you by any chance have an endocrinologist? If so, he/she would be the one to address this.

[Jan]

Have you had a tilt table test to get your diagnosis?

My only suggestion is that you have to stop lying flat in bed all day. Even a healthy person who lays in bed for more than a few days will have POTS symptoms and eventually get bed bound. That is why after an operation, they make people walk right away, even if a few steps.

Do you have a recliner? If so, sit in that during the day. Start with if far back and work toward sitting up. Prop yourself up in bed again even if it brings on symptoms. You need to retrain your body to be upright. The body will learn, you have to teach it. Even if it is one minute at a time.

I used to avoid walking any distance because I would get so symptomatic. The doctor at the Mayo told me to walk as much and often as I can. The body needed to relearn to walk. Her words were gold. When I stopped avoiding things that caused me symptoms, I made progress.

See if you can get a referral to PT. Then ask the PT to show you leg strengthening exercises you can do while lying down. You want to get the muscles in your legs back to normal.

What medications have you tried. Florinef is a good one to start with, salt alone may not help and Florinef will help your body retain the salt.

[little_blue_jay]

How are you doing, sleepy lady?

I know that during that "time of the month" my symptoms get way worse too I'm just getting over a "period flare" - I was super tachy, wasn't bedbound but was pretty much housebound, soon as I started doing any housework the shortness of breath and tachy would take over. Couple of times I had to do my dishes in stages! Coming up the stairs was awful.. I'd have to go slow and stop at the top, gasping, like I'm a little 103 year old woman!

So sorry to read what you are going through, sleepy lady! You must have someone at home who is helping to care for you when you cannot get out of bed?

[yogini]

I am not a doctor, the numbers you are reporting do not seem severe to me. I have had 100 pulse lying down many,many times - or even higher like 120. A BP of 100/49 lying down is not abnormal. I have had Bps of 60/40 and this is within the healthy range for lying down - even for people without dysautonomia. I still get these numbers sometimes, but I am able to work full time and have close to a "normal life"

Personally, having these numbers would not make me stay in bed. You should ask your dr whether this is required - bed rest usually is not recommended for POTS patients. Staying in bed makes things worse as your body forgets how to be upright.

There are meds which can bring up your BP like florinef and midodrine. SSRIs helped with my BP. You can also wear compression hose.

Having your period makes you feel worse and also affects your emotions. POTS is scary, disabling and very uncomfortable, but not deadly. I would try to find a good doctor in your area and pursue the treatment that he or she suggests.

[POTLUCK]

I talked to a nurse friend who works at the hospital nights and she said patients can sleep through very high heart rates without sleep aides so the high HR itself is not the only factor- this was a question I had myself. A ramped up adrenal system from POTS or other causes such as depression in my recent case, or a combination may explain it but since I am extremely sleep deprived I cannot tell you.

[POTLUCK]

My POTS sounds no where near as bad, but I do know my HR goes over 100 when rolling over, and do not see that as high.

The blue nails also sounds like Raynauds which I get with the hyperadrenrgic form of POTS, I think from peripheral vasoconstriction.

Most important POTS is a syndrome so it may have many causes, see if the doctors can check based on the other symptoms.

I hope the above was helpful, it was meant to say that some of the symptoms can be 'safe" and not to minimize a terrible experience.

Hope you can find your help.

[sleepy_lady]

Sorry I disappeared for so long, yall. It's taking awhile to get comfortable with these symptoms for sure, so I sometimes just want people to tell me I'm normal.

I have super brain fog right now, so I can't fully thank everyone for their advise/views, but thank y'all all so much. It helps to have other people's take on the situation

Kinda unrelated question, but has anyone here ever cut a yellow oval florinef tablet? I've just done that this morning because the symptoms were shocking my system and my doctor is unavailable. Hope I didn't ruin my dose?