yogini

Do you need to go in the summer?  It is extra hot and crowded.  

I would spend some time researching Disney for people with disabilities ahead of time - and also just how to navigate the park.  There are many things you can do to prepare and make your trip less stressful.  There a lot of good books and websites dedicated to this. Don't hesitate to use all  of Disneys disability services if you need them. Who cares what people think about the scooter, when you'll never see them again!  

I've grown up going to Disney and been their twice post-POTS. Bbut by the time I went I had very minimal symptoms left.  I could walk around, wait in line and go on any rides (though I skipped some out of caution).  I do tend to get tired, so just slept in and met my family a few hours later in the day.  We stayed in Disney properties so there is free transport by bus or rail. And made sure to stay hydrated.  You can bring in food and drinks, last I heard.  

This could be one of.a number of things.  I get fluid from my nose when I tilt forward which I always assumed was mucous. I also fluid from my ear which I assume is water.  Everyone is different but a doctor could tell you for sure.

Dysautonomia has some scary symptoms, including chests pains, but in and of itself does not usually cause a risk for a heart attack.  However, your  doctor could advise you best.  He or she could do a full workup, take into account your family history and give you guidelines on if and when to go to the hospital.  

 Many people with dysautonomia drink 3-5 liters per day.  Check with your dr, but 2 liters does not sound like it would wash out your salt or electrolytes, and washing out salt is often helpful if you have high BP anyway.

Many with dysautonomia are diagnosed with another condition like gastroparesis, lactose intolerance, celiac, etc. You may want to get tested for these if you haven't already.  Personally I've found eating foods with fiber clogs me up.  Especiallywhen my stomach is bothering me, I do much better with very simple easy to digest foods - Jello, baked potato, rice, steamed chicken, etc.  Lots of fluids are also helpful.

  I remember people posting about EPO from time to time on this forum when I first joined 15 years ago.  It doesn't come up much anymore.  I know a little about EPO because a while back my mom was on it for anemia.  After a few years of taking it, the doctor took her off of it after some research re risks was published.  So I think it would be important to think through with your doctor.

I'm not sure that intense exercise like marathon training is included in any of the exercise protocols for dysautonomia.  Most of the ones I've read involve gradually building up with moderate exercise in a reclined position - things like recumbent bikes and swimming.

On 12/29/2018 at 6:54 PM, Sam goodrich said:

Hmm that is odd. Everyone’s different I guess. I am certain it was the flu shot that triggered my pots again.  I worked hard for years to defeat pots and had succeeded to what I had thought was a normal life again. Until crashing hard a hour after the shot. Rapid heart rate upon standing/ vertigo / impaired thinking. Going on two weeks. How long did it take you to recover after the B12 shot???? Thank you

Unfortunately Dysautonomia is a condition that waxes and wanes in a way that is beyond our control. The best of us cn relapse even though we work hard at our fitness, etc.  Usually the initial diagnosis is the hardest and the next time around it is easier. Getting a bad case of the flu is also something that can cause a relapse so most doctors do advise to get the shot. I’ve gotten it every year. I have felt dizzy sometimes right after getting the shot but it has gone away in a few hours. I hope you’re back to  your baseline soon.have you checked in with your doctor?

People disagree on this, but I don't think the category of dysautonomia matters all that much.  Many people have a range of symptoms and have both POTS and NCS.  The treatments and mediations you can take are largely the same - beta blockers and florinef are used to treat both conditions.  It just depends on what works to make you feel better.

Sorry you are having so many challenges.  Have you been diagnosed with dysautonomia?  I think most medical professionals aren't good at treating patients who are in any way outside of the box.  My PCP is decent and he's had some PAs (or other doctors in his office) who are terrible.  I now insist on seeing only him, even if it takes longer to get an appointment.  Along my POTS journey, I met several doctors who didn't listen to my symptoms and speculated random illnesses.  I never went back to them, ever.  I would just forget that you ever had the appointment with that PA.

My doctors did not give me IV therapy when I was sick.  I did have an IV a couple of times in the hospital and felt much better.  It does seem like a very good option, especially for people who don't respond to medicine.

Yes definitely keep track of what you are eating for a week and the time that it happens.   I would also get tested for dietary problems like gluten intolerance, lactose intolerance etc.  POTS can cause you to go to the bathroom a lot, but if it's happening every morning, it might be something else.

What level of compression does she use in her compression hose?  Has she tried abdominal compression?  Strengthening the leg muscles also helps with pooling.

Hi, check with your doctor, but I would be worried more about blood pressure and blood volume than pulse pressure.

A normal BP is considered to be anywhere in the range between 90/60 to 120/80.  Your doctor can advise best, but It seems your BP is on the low end of the normal range.  I think most doctors would not be concerned with this.  I had 90/60 BP all my life before getting dysautonomia and many of my friends and family have this BP and they don't have dysautonomia.  With dysautonomia there is a wide swing in HR and/or BP between lying and standing up.  

Yes thank you for suggesting the forums. That is probably where I should start my research.

1 hour ago, Colomom said:

If I were in your shoes I would consult with a sleep doctor/ pulmonologist  before making any final decision on treatment. There are a number of drawbacks with mouth guards to consider. First of all they are expensive and aren’t always covered by insurance. The generic buy them online guards don’t work, and ones purchased thru a dentist are expensive. My brother has mild sleep apnea and looked into having his dentist make a mouth guard, the dentist quoted him $2500 and his insurance would not have covered a penny of the cost.  Mouth guards used to treat sleep apnea often work by opening up your mouth by pushing your teeth forward which can create problems with your teeth and jaw. The other major drawback with a mouth guard is that it is not as nearly as effective as CPAP at preventing sleep breathing events and the only way to know if the mouth guard is working is to get another sleep study. My son’s APAP machine records data on his breathing when he uses the machine,so it’s easy to evaluate treatment and make changes when warranted.

You don’t have much to loose by trying CPAP first. The way it works is that for about the first year your insurance technically rents the machine (instead of paying the entire cost of the machine up front they pay monthly rental payments). Once you receive the machine you have 90 days to become “compliant” which is defined as using the machine a minimum of 4 hours a night for 21 of 30 consecutive days. If you can’t tolerate CPAP and don’t use the machine they will take it back and the rental is ended. If you do use the machine the “rental” payments are rolled over into a purchasing deal and after about a year you will own the machine.

I needed the mouth guard anyway for grinding my teeth.   My dental insurance rejected coverage when it was submitted earlier this year, so I was going to use my flexible spending account for it next year.  Now that I got the prescription I will try to submit under  health  insurance. The cost without insurance is $750, which isn't that bad anyway and with FSA, it's 1/2 that, and it will kill two birds with one stone.  I think everyone's insurance works differently for the CPAP.  I have decent insurance so I think it would be covered, but I am not in a rush.  I just have too much going on through the holidays so will do some research and decide in the new year.

Thanks everyone.  My doctor said most patients get the CPAP and don't bother using it.  My doctor suggested getting  mouth guard - I grind my teeth and needed the mouth guard anyway, and when it is designed a special way it stops sleep apnea.  I think there are other ways of treating too.  I need to sit down and do some research.  Dysautonomia is about not enough oxygen to the brain.  When I am tired my dysautonomia is worse, so I think treating this can only help.

On 11/27/2018 at 8:20 PM, StayAtHomeMom said:

Rapid gastric emptying is a good word for that. My boss (has a degree is the medical field) said it takes 24 hours for food to go through you. No way can you eat something and cause diarrhea 15 minutes later. My argument for that is that the food hits my stomach and my stomach sends an emergency signal to empty my bowels.

This has gotten better for me since I started the Keto diet. Not sure why the carbs would make that big of a difference because I don't have celiac. But it has been my experience it has been amazing. Unless I eat a lot of the sugar free chocolates. 

Many things can cause diarrhea just after eating including food poisoning, IBS, Chron's disease or lactose intolerance (if you eat lactose).  I sometimes get it from eating cheese.

A couple of weeks ago I was diagnosed with moderate sleep apnea.  I usually wake up once in the middle of the night and that explains why.  I was given the option of getting a mouth guard or a CPAP.  I can also go to a sleep doctor which I might try to do next year.  Because of the holiday I haven't had a chance to research what this means. Just wondering if anyone else has this and what treatments you may follow.  My dyautonomia is largely improved.  I'm wondering if I treat this if I will feel even better and closer to normal.

Is your CPAP machine working to treat your apnea?  What are your BP and pulse ox when you wake up with your heart racing? The heart rate usually increases to improve circulation and if you aren’t getting oxygen due to apnea a HR increase would be a normal response. The worst symptoms in Dysautonomia occur when standing. If your symptoms occur while sitting or sleeping it might not be Dysautonomia. If you have already been diagnosed with apnea I’m wondering if it’s that. Keep us posted. Also let us know if the doctor in Austin is helpful.

Measure your BP Florinef headaches are usually caused by BP going too high, in which case the answer is to adjust the dose. Your doc can advise best.

Vertigo is spinning/dizziness related to an inner ear condition. I experienced POTS related dizziness as my main symptom virtually all the time until my POTS began to improve.  POTS related dizziness doesn’t usually involve spinning. Headaches are also a symptom of Dysautonomia.  All of my symptoms began to improve once I got on the right medicine.

what are your heart rate and blood pressure when you experience the symptoms?

55 minutes ago, Eraena said:

@StayAtHomeMom

The only medication I'm taking now is midodrine, 2.5mg once a day. I thought about calling the doctor to see if I can up the dose.

You should consult with your doctor. Most people take midodrine a few times a day and the dose you are on is low. But also there are a few other medications that increase BP. If midodrine doesn’t work for you.  It takes time to find the right treatment.

Which medications have you tried? There are several that help hypotension.