yogini

Have you tried sitting down in the shower?  You can use colder water and it also helps to bathe late at night, way after you’ve eaten

Hi, so sorry you are going through this. I’m not a doctor but it sounds like you’ve come to the right place. Dysautonomia runs in families.  If your daughter had a positive tilt table, and you are having dysautonomia like symptoms there is a very good chance you have it.  The heavy legs resonates with me.
 

If you can manage, slow down, start measuring your heart rate and blood pressure and try to do more moderate physical activities and rest/lay until you can sort out your diagnosis and treatment.  If you have dysautonomia doing the wrong kind of exercise can make things much worse.  If you start to feel sick the best thing to do to avoid an episode is to stop and rest, rather than pushing through.  You eventually will figure out a rhythm and you may feel better and be able to do much more just by getting on the right medicine.  You can start to read and you’ll learn about home treatments like loading up on water and salt.  Best of luck,

13 hours ago, Mik Thundercloud said:

I have had some Diabetic Neuropathy diagnosed for several years.  EMG documentation subsequent to painful feet and toes in 2006.  Since that time I have had my BGs under far better control but the Neuropathy continues to develop.  I have experienced Orthostatic Hypotensive issues on rare occasion since 2012 with Syncope only once in 2013.  I have learned to "Sit Down before I Fall Down" when I feel weak and a little dizzy.

This month, on February 9, 2021, I received the first injection of the Moderna COVID-19 Vaccine at my local Veterans Medical Center.  Had NO apparent immediate side effects.  The next morning, my wife and I went to the gym for a brief workout.  I only spent about 2 minutes on the recombinant bike before I felt weak.  I took a break and sat down for 10 minutes waiting for my wife to finish her workout.  Upon standing, I felt dizzy and very weak for just a few seconds before I lost consciousness.  

My wife was able to get me back up immediately and took me to the ER.  Everything was good, with no problems other than the possibility of some very minor dehydration.  

I have been suffering with substantial OH since with 2 additional Syncopal Episodes over the past week.  I am now working with my Cardiologist to adjust my BP meds, but it is a confusing balance.

Has anyone experienced similar issues from the COVID Vaccines?

.

Exercise is the biggest trigger for dysautonomia and when combined with anything else unusual our bodies don’t handle it well.  Whenever I fall outside of my normal  POTS-friendly routine - whether it is to fly on a plane or to drink alcohol or to get a flu shot - I definitely pause exercise for a few days  and just rest.   I hope you feel better soon.

14 hours ago, RecipeForDisaster said:

She is an MD. It’s just like she doesn’t want to do that part!

I would be wary of going to a doctor that doesn’t want to give me their 100%, especially if paying out of pocket.  No way.

Hi I would mention this to your doctor. I have heard this associated with other conditions not related to POTS which you may want to have checked out to be safe

12 hours ago, Platypus said:

Wow thank you all for sharing. It is helpful to have something to show my docs I am not the first. I have colored my hair hundreds of times... from black to red to blonde to bleaching. No special precautions. That said, my heart related symptoms didn't really start until 2013, after a virus.

Today I did a custom color blend, 3rd time using it. While waiting, my heart rate went to 137. I sat down and got it down a little but it did not fall until I rinsed it out in the shower. My hr then was lower at that point than sitting with it on.

I definitely have a funky immune system, and have had all kinds of weird reactions but this was so different. 

Henna is super messy but thats my plan. Definitely don't want to do this again.

 

 

You can check with your doctor, but if you've done something a few times before and didn't have a reaction, it could just be the activity of applying the color lifting arms above the head, etc. that caused the symptoms.   Sometimes when we are in a flare, this happens.

I'd guess a high % of dysautonomia patients have had at least one terrible/scarring experience with an EMT or an ER.  Overall  I have had mixed results with EMTs the 3 or 4 times I dealt with them.  A couple of times they were very helpful, noticed I had low BP and high HR.  A couple times they told me I had anxiety.  One time I was prescribed Xanax when I got to the hospital which I didn't need.   IV saline would have worked

EMTs and medical professionals need to learn to listen to patients (especially women) evaluate their physical symptoms and not give psych diagnoses that they aren't even qualified to give.  Dysautonomia is often worst in an upright position.  When lying down in an ambulance the symptoms might get better, which is important to also know.

10 hours ago, Sarah Tee said:

@yogini, all good points. I am in the dark at the moment as to what is wrong with me ... I am waiting to see a dysautonomia specialist (cardiologist), but if he rules out dysautonomia I don't know what I will do. I am petrified that no specialty will "own" me if I don't fit anywhere, and I'll never get any treatment for my OI/presyncope/fatigue symptoms.

I can only hope that the dysautonomia specialist will refer me on, not just send me away.

I feel for you.  It is a long. painful and scary journey.  I really hope the specialist is helpful.  But if not, keep in mind many of us went through several doctors.  Most of us eventually find treatment and improve.  Hang in there.  Let us know how your appointment goes. 

On 2/17/2021 at 6:36 AM, Pistol said:

So - I am in a flare and bedbound right now. Usually the reason I am in bed is the OI and fatigue. Fatigue usually - to me - means no energy, feeling drained. This time in addition to the OI and fatigue I feel more like I PHYSICALLY cannot move without effort - I guess weakness. This is a new symptoms for me. Do many of you experience weakness with flares or just fatigue?  

I  am so sorry you are in a flare.  Sometimes I have a hard time lifting my arms or my head.   This happens to me in the morning even on days when I am healthy.  I just feel like it's too much work to move and that happens sometimes even when my brain is wide awake.  I often listen to audiobooks at that time as that's a way to do something without requiring any energy.  This feeling fades away, sometimes after drinking water, other times after falling asleep and waking up again. When I am in a flare it takes a few days.   Feel better soon

23 hours ago, Sarah Tee said:

@yogini, funnily enough, my symptoms are as regular as clockwork (unlike many people here). They never get worse with stress, exertion on previous day, other illness. Weird, I know!

I will try checking my blood pressure and heart rate when my symptoms are at their worst during the day and comparing it to when I feel better (late evening).

So far BP and HR have been in normal range and consistent with what seems normal for me, but I haven't compared symptomatic times with asymptomatic times.

I really wish it were possible to check blood volume as easily as blood pressure. (I suspect my problem is blood volume.)

If you have low blood volume then expanding through salt and water even when your blood pressure is normal should help.  But that's why it's important to monitor BP - because if you have too much salt and water it will creep up.  By the way, most people with dysautonomia don't actually have low blood volume but even then our symptoms mimic low BV.  The reason for this is that our blood vessels don't constrict properly in the upright position, so the blood pools in the lower part of our body instead of spreading evenly the way it does in healthy people. 

14 hours ago, Sarah Tee said:

@brainchild, thanks for responding. Your football analogy definitely makes sense. I am hoping that when I see the specialist in August there will be something measurable, although I am trying to prepare myself for the outcome that he will be just as much in the dark as I am.

If it was a straightforward case of low blood volume, it seems the salt and fluid would work every time, so there must be further wonkiness, as you say.

Oh well, fingers crossed!

Our condition waxes and wanes with so many factors so we have to keep adjusting.  With women, even things like the menstrual cycle can affect blood pressure, along with things like weather.  Have you tried keeping a record of your heart rate and blood pressure.  I found that really helpful when starting out.  

15 hours ago, WinnieBlue said:

My symptoms are worse after I eat. I do all my errand running in the morning and dont eat food until 11am. This is one reason i cant work anymore. I am absolutely miserable after I eat and i cant go longer than 12-1pm without eating or that makes me faint. I know that when you eat more blood is directed toward your gut to aid digestion and with PoTS we already have trouble with keeping blood in our head and extremities. 

I have not found the answer or any remedies. I do sit with a heating pad on my belly after i eat to help the blood flow and digestion but doesnt help with fainting. I need to get my blood checked but getting my blood drawn is one of my worst triggers. I faint and/or vomit during the blood draw and afterwards im sick as a dog all day. So naturally i have a phobia of blood draws 

A heating pad dilates blood vessels and would probably make pooling around your stomach and likelihood of fainting worse.  Have you tried eating very small amounts of protein?  What helps me the most with eating is drinking two large cups of peppermint tea in the morning.  I can't eat before that has absorbed into my system.  I assume this is because I am waking up dehydrated and it boosts my blood pressure.   When things were really bad, I drank broth followed by water. 

On 2/6/2021 at 6:47 PM, DizzyGirls said:

My daughter has been passing out after she eats breakfast.  This is a new thing, but, by no means the only thing she's got going on (does anyone ever have just one thing at a time???!).  That being said, I'm sure this happens to many of you!  So, what do you do when this happens to you?  My guess is most likely post prandial (sp?) hypotension, but would be interested if anyone else has a different diagnosis for theirs!  Thanks all!

What is she eating?  Dysautonomia patients often do better with small amounts of food more often.  I find that true earlier in the day - I can eat less and I can have a big meal for dinner.  I don't faint but if I eat a large breakfast I can't function or think.   

It might be helpful to measure her blood pressure at in the morning before she eats.  Drinking water or gatorade first thing in the morning might help with the BP and then she can eat a little after her body absorbs the drink(s).  Coffee also works for some people but that can be a mixed bag

On 2/13/2021 at 6:42 PM, Hippopotsamus said:

Hello! Where I live is pretty cold right now and I’m missing having tea like the good old days before I had POTS. I have to strictly avoid caffeine, and do ok with decaf green tea (even the decaf black tea triggers some symptoms for me). I was wondering if anyone out there has a warm drink that helps with symptoms instead of making them worse?

I drink peppermint teat It has no caffeine.  It also helps settle my stomach. Most herbal teas would work.  Also soups are high in salt, a good way to help POTS and stay warm,

On 2/13/2021 at 8:35 PM, MTRJ75 said:

I've been allergy tested, probably around 7 years ago now, and then more specifically for mold issues more recently. Nothing actionable came up of course. You describe some of my issues with medications though @Pistol and Claritin has done nothing for me. I did take one of those Claritin red tabs that's supposed to act more quickly and had a tachycardia issue later that day. 

Basically, when I try to ask the doctors about this I get on the referral merry-go-round because it involves multiple systems. I'd love to be able to find someone to allow a trial of LDN. 

 

It might feel to you like everything is connected. But unless a doctor has advised that these are related,  it might make sense to assume that the post nasal drip is not related to low blood volume or skipped heartbeats.   There are some co-conditions like mast cell that maybe could apply.   Otherwise I haven’t really heard of post nasal drip as a POTS related symptom.  You may just need a prescription med rather than an over the counter med like Claritin.  
 

If you are worried about low blood volume or skipped heartbeats, a cardiologist can help with those separately.  

On 2/3/2021 at 10:43 AM, leehart said:

Hi. I don’t yet have a diagnosis and I suspect I’m at the beginning of my journey. I’m in my 40s and have been very athletic for the last 10 years or so. I’ve recently noticed (post a routine surgery) that my heart rate is doing some wacky things— it’s going much higher than normal doing basic tasks, although it’s not winding me per se. Whike I was checking it on my watch, I noticed it can leap anywhere from 30-40 beats from lying to standing, although it often quickly drops again once I’ve been standing (Eg it ramps then drops again). Is that POTS? I’m seeing a cardiologist this month and would love any tips on what to ask for. Also, is there any harm in continuing my activities with a higher heart rate as long as I’m not exerted?

POTS is a sustained increase in HR beyond the 10 minute mark.  In other words my if HR was 75 sitting, when I stand it goes up and after 10 minutes of standing still it’s 105 or higher. 

On 2/3/2021 at 8:45 AM, Sarah Tee said:

@RecipeForDisaster, thank you for your kind words. I am sorry to hear you might have another condition adding to your situation.

I will have a look at compression stockings. I had not tried them so far because I don't have any obvious signs of pooling in my legs (not that that rules it out), but I will ask my doctor (GP/PCP).

I am feeling so confused at the moment because my fatigue/presyncope symptoms don't seem to correspond to orthostatic intolerance – they come on 30 mins to an hour after I get up, and disappear later in the day (currently about 10pm, but previously much earlier).

Anyway, while I wait to see the dysautonomia/POTS specialist, I want to work through everything I can in terms of countermeasures.

It’s quite common to feel better later in the day. No one has quite figured out why, but that’s totally common. I am not sure countermeasures would help with that.  But if you have particular symptoms (like low blood pressure) earlier in the day people might have ideas to help. 

I agree it is hard to lose weight with dysautonomia, when we feel better resting and not being active.  When exercise is more limited, it's even more important to manage your diet.  I've found a bunch of things that I like to eat that are a combo of lean meat, veggies, low in fat and I alternate between those recipes.  I try to avoid processed, packaged and fried foods and don't keep any of those at home.  A bag of mnms disappears too quickly, so better to just not have it around.    I'm about 10 lbs overweight and I'll bet if I was more careful when I got takeout that would go away.

On 12/8/2020 at 7:01 AM, CallieAndToby22 said:

So I was referred by my cardiologist to a dysauonomic doctor in Texas. They called me up and said after reviewing my records and told me I don't have dysautonomia. I was quite offended. I've had tilt table tests and been diagnosed by 2 autonomic specialists and my neurologist. Also, I'm very very sick, my blood pressure is way too low and after 5 minutes of standing I get very ill. I have huge adrenaline drops that won't stop for months. HR upon standing is 140. I have no idea what these people are talking about. And Vanderbilt hasn't even reviewed my records, it's been 4 months. I need help now. I'm having autonomic seizures......... etc. Not sure what to do. I don't know why this office told me that!? 

I am so sorry you are going through this, but I would say that your diagnosis is not wrapped up in any one doctor.  A person who hasn't examined you isn't in a position to give you a diagnosis.   So rather than getting offended. I would take it as a reply from the doctor that he or she doesn't have the skillset to be ale to help you.  It is much better that they told you up front, rather than taking up your time and energy.  

There are a number of conditions that can cause exercise intolerance.  It is always hard to know but if a sustained increase in HR (or decrease in BP) is not one of your symptoms, I would put dysautonomia as lower likelihood for the cause of your symptoms.  Not necessarily ruling it out, but maybe your time is better spent investigating other conditions first like with your neck and other injuries.  Did you have a full cardiac workup with ECG, Echo, stress test, etc?  And a full blood workup?

REgardless of whith form of dyautonomia you have, many of the typical dysautonomia symptoms cause fatigue: low blood pressure, high heart rate, high blood pressure, lack of oxygen to the brain.  The cause of the fatigue would probably depend on your particular etiology.  Many of the medications we take - like beta blockers - also cause fatigue.  I found that once I got on the right meds and got moving my fatigue decreased dramatically.

I always get a flu shot without any POTS flare up.  I do this to avoid getting dehydrated from the flu. 

This year there was an extra incentive. Once flu season hits, if you get a fever you won't know if it's the flu or COVID.  Everyone in this situation will need a COVID test to sort this out, and there is already a shortage of COVID tests.  It seems like it would be super stressful to have that happen, with POTS also in the mix.  For me, it is a relief to remove the flu from the equation.    

For those who are considering it, earlier is better because there is expected to be a shortage of flu shots this year.  

Hi.  Many people with various forms of dysautonomia have a reaction to alcohol and/or caffeine.  I am not sure that having a reaction would be informative toward a diagnosis.

No change in BP is required for POTS.  I hope you get some answers and start to feel better soon.

On 9/13/2020 at 12:13 AM, gatsby said:

@yogini

By the way, I did the poor man’s tilt test at home and I definitely go over +30 bpm every time I stand, almost instantly. My BP stays stable though...

Hi.  Did you ever figure out the cause of your chest pains?  And did they give you different options of medications you can take to treat them?  I am not a doctor but I would guess there is more than one medicine available and experimenting with the medicines might help you figure out whether the dysautonomia-like symptoms are a side effect of your current medication, or whether you actually have dysautonomia.  Treating dysautonomia is possible, but it can be a very long journey of trial and error and one that you really don't want to go down if you can avoid it by swapping out the chest pain medication. 

If you don't have access to a tilt table test, you can do a poor man's tilt at home.  (You can google or search the forum of the instructions)

Did your doctor advise you on whether the chest pain medication could impact your tilt table results?  That is also something to think about before you take the test.