yogini

10 hours ago, MomtoGiuliana said:

My BP is typically more stable if I am well-hydrated.  IV fluids 2 to 3 times per week helped me greatly, including erratic BP and HR, when I was in a very bad flare a year ago (when I am in a bad flare I have both high and low BP).  Otherwise, I try to just stay well hydrated with drinking a lot of fluids.  That said, with a severe situation, you may need more than fluids to address this.

Totally agree with the above.  When I was sickest I drank a big cup of organic broth a couple of hours before bed, followed by lots of water.  That helped me stay hydrated overnight and be more functional in the am.   Another idea which is midodrine, a prescription medication which wears off in a couple of hours.  Or compression hose, which you could take off later in the day if your BP increases.

The best thing is to ask your doctor.  But I wore medical compression stockings when riding a bike and they did slide and they do help.  I've also tried the runner's stockings which are much more comfortable but not as effective on dysautonomia symptoms. 

Personally I have given up cardio.  I only do yoga and it only very rarely triggers my symptoms.

I have a desk job. I scaled back and took some time off, but now am back at work.  I think it would be harder to do a physical job.

It’s probably that you are getting out of breath,

If he hasn’t already, he should get a full gastric work up and get tested for food allergies and intolerances. Is he at least able to prop himself up in bed when he eats and stay up for a couple of hours after.

Soup makes a huge difference for me, so cutting that out along with other salty foods would personally make me feel a lot worse.  Also it’s probably a good idea to coordinate changes in Florinef with your doctor. For some meds you can take more on days when you’re feeling worse but florinef is usually not considered one of those.

On 4/24/2019 at 10:44 AM, bombsh3ll said:

I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. 

Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. 

I will be following her story. I wonder if Dr Levine will too. 

B xxx

I don't think there is a 100% link between being bedridden and orthostatic intolerance.  And I also think that those who get temporary orthostatic intolerance after being bedridden are in a different category than most of us here.

Dysautonomia is a strange condition. Any other thing going on with your body an cause your symptoms to be triggered.  So it could just be the fact that you are taking a new medication that sends a shock to your system.  It might be helpful to keep track of your blood pressure and heart rate.  If you've fainted there is a good chance your blood pressure is dropping.  If that is the case, your doctor could prescribe another treatment to help compensate for that.

Have you asked your doctor about the potential interactions with the drugs you are taking?  

Changing positions definitely triggers symptoms.  It can be scary.  Be sure to mention to your doctor and get a full cardiac workup, but many of us get similar symptoms.  My cardiac checkups have come back normal and my doctor told me not to worry

On 4/14/2019 at 4:12 PM, gossamer4448 said:

Theres nothing I can do i too cant take BC and my sleep issues are hormonal.  everytime after my period  I get hardly any sleep I. dont know what to do . Im afraid of a mental breakdown and having to stay in a psych ward because im losing my mind, my self . my period makes me so depressed because i cant do anything about it every month . What medicine is the one that  helps your brian fog? 

You should probably see a doctor to address this. I am not recommending that you take birth control, but there are multiple treatments available for issues with your period, hormones and sleep. You. Isn’t have to try a bunch of them to determine what works. Your problem might not be Dysautonomia related.  But drinking extra salt and water could help with blood loss during yout period. 

I would't assume it is from adrenaline. It could for example be from nerve damage, which may or may not be related to your dysautonomia.  

What is your blood pressure?  Did you take extra water and salt to compensate for the blood loss during your period?  I always get brain fog when I have low BP.  Birth control is also helpful to manage symptoms.

I recovered from Dysautonomia by starting with 5 minutes a day of exercise and when I could handle that I increased by 5 more minutes. Then I stopped cardio and now only do yoga. I know some people here have had great success with the prescribed protocol, but many cannot handle it.  In think in general though when starting execercise you will have increased symptoms.  For me going gently minimized the impact. I also did not exercise on days when I had obligations that I wanted to keep.

What a thoughtful post!  Thanks to everyone who gives their time to keep up this site.

I haven't had the test.  I believe most dysautonomia patients have normal blood volume but benefit from expanding blood volume anyway.  I have heard that florinefworks for people who have been diagnosed with low blood volume.  High BP can be a symptom of low blood volume.  I think it works less well for hyperPOTS, for which high BP is also a symptom.  I have low-isa BP and a low dose of florinef made my BP too high and I had a hard tie wearing off of it, so I am personally a bit wary. 

Have you been tested for low blood volume?

I think a traumatic event like a death or funeral could also cause your symptoms to act up.   Hope you get some rest and feel better.  Have you tried compression hose?

I don’t believe there is “withdrawal” from Florinef the way you might have with an addictive substance like a painkiller. It’s a steroid so your body may take some time to adjust.  Most people who have a hard time warning off are able to handle reducing their dose by a fractional pill just as you describe without feeling much effect.

Could her oncologist coordinate with the dysautonomia dr or do some research? She and you should not have to figure this on your own. In general I think you’d want to monitor her heart rate and blood pressure and make sure she is hydrated, and consider the side effects of the meds/treatments she’s on and how they might affect her HR and BP.

If you are having multiple changes effect from licorice, Florinef, herxing, it might be hard to tell what is causing what. If your blood pressure is coming down from reducing Florine’s, how about compression hose to keep it up? 

6 hours ago, Pistol said:

I have hypertension whenever I faint/ take seizures. In my case excessive sympathetic activity constricts all the blood vessels ( hence hypertension ) but there is no blood flow to the brain due to the vasoconstriction. 

Julyrose said meds that expand blood volume are contraindicated for her and that she adds salt and drinks gatorade.  Those have the effect of expanding blood volume.  That's why I suggested that she coordinate with her doctor. 

it is unusual that you have high blood pressure in your brain but keep fainting at the same time.  Usually people faint when there isn’t enough blood getting to the brain.  Have you had your blood volume tested?

if meds that boost blood volume aren’t allowed you may want to ask your doctor if you should be increasing your salt intake.  The purpose of the salt is to increase  blood pressure and blood volume.

In my opinion broth is the most effective drink is broth followed by lots of water.

Many people here do have allergies or asthma which is separate from dysautonomia. I’d get this checked out sooner than 3 months if you can.