Lily

Remember that there are several different mechanisms that cause the same set of symptoms (which we call POTS).  For example and not all-inclusive: some people have a lot of blood pooling, others have weird reactions to histamines, others have low blood volume.  The commonality is a malfunctioning autonomic nervous system.  So you could have POTS and not have blood pooling.  

My feet turn a mauve-pink color.  I tought that was normal (I'm standing on them, after all!) until my doctor pointed it out during the TTT.

My dad was given the choice of losing weight or using a cpap.  He gave the cpap back after one night and worked at losing weight instead (which did decrease is snoring).

There are multiple forms of dysautonomia.  The connecting factor is a malfunctioning autonomic nervous system, but the mechanisms that cause the symptoms differ.  Getting the diagnosis pinned down more precisely will take time, but it ought to help you find the correct treatment.  There are treatments, like your doctor said about that one medication, but they do not cure the problem.  Some good news: many people with POTS, for example, are able to regain some level of functioning, up to living a completely normal life.  You are not necessarily doomed to a life of disability.  Keep pursuing treatments and don't give up.

I'm going to come at this problem form the other side:  What if she is correct?  If you do indeed have psychological issues with respect to food, then consulting a psychologist might be a good idea.  The psychologist ought to be able to either confirm what the gastroenterologist said, or else tell you that it is not so in your case.

My doctor did not take supine blood.  He only drew blood after 18 minutes into tilt.  My NE was 1962 ng/dL, which definitely put me into hPOTS territory.  But I also have symptoms consistent with low blood volume and overly stretchy veins.  The going hypothesis is that NE gets so high in response to these other failures.  But anyway, there is another data point for you.

I tried raising the head of my bed by about 6 inches.  Much to my surprise I did not need to pee as often in the middle of the night.  I can go about 6 hours now before needing to pee again.  Yes, I am taking Clonidine, which helps decrease the need to pee as well.  Raising the head of the bed resulted in an added effect on top of that.

I take Florinef, and it plus the requisite salt and water loading made a huge difference in my level of fatigue and lightheadedness.  Granted, I have never been as badly off as your daughter, but I no longer worry that I won't be able to do my job.  I increased the dose gradually after reading a lot of anecdotes on the internet, and I did not have any side effects.  Also, my sister has been on Florinef for well over a decade (maybe 2) and as far as I know she has never had to go off of it.   I suppose it depends on individual differences.  Another important point I discovered is that the salt and water loading is more effective when I get some of it in the form of Pedialyte (or similar DIY mixture), about twice per week.

On 11/3/2018 at 2:13 PM, dancer65 said:

Looks lovely ! I love turquoise . 

Would like to know how small can you make the bangle I have tiny wrists ? 

 

I'd like to know, too!  I'd get one if it comes in 6.5 inch circumference.  Any larger and it would dangle and interfere with typing.  Can you please tell us the size of your wrist and the size of the bracelet?

I guess it depends on your own level of functioning and exercise intolerance.  I use healthy-person perceived exertion guidelines, because I am not so badly off that I can't exercise however I want to.  Others will need to monitor heart rate more precisely.

I vacationed at 7,900 ft this summer.  There were 6 adults and 3 kids on the trip.  Three of the adults have POTS, of which 2 also have NCS and 1 CFS.  Everyone got a headache the first day or 2.  Most of the adults mentioned getting winded with exertion much easier than at sea level.  Everyone felt normal by the end of the week.  I kept checking my SpO2 on my phone, and it went from 98 - 100 % at sea level to 87 - 93%.  Overall my experience was about the same as everyone else's.  The extremely low humidity removed a variable that usually makes me feel poorly (dewpoint temperatures were in the mid 40's Fahrenheit, compared to 60 - 75 at home).  Note that I am not as badly off as some people here (full time job, not housebound).

I do not have noticeable symptoms from the regular dental pain block.

I had the same concern when I started it.  A lot of people on the internet reported that starting with 1/4 tablet and increasing my 1/4 tablet each week up to the prescribed dose prevented weight gain.  I did it like that, and I have not gained weight.

What do you do when you wake up in the middle of the night?  Do you start thinking?  Worrying?  Oh no, not again, why???  I've been there and done that, and it makes it more difficult to get back to sleep. 

Some people tend to have biphasic sleep, and will naturally wake up for about an hour in the middle of the night.  This supposedly used to be normal pre-electricity.  People would do quiet things like read or pray during their nighttime awakening, or even go out and chat with neighbors.  Try telling yourself that you are having a normal variation on sleep and that it is totally okay, and occupy yourself with something not very stimulating until you feel sleepy again.

A big part of the candida cleanse is avoiding sugar and white flour.  If you do this you end up avoiding a great many processed foods and eating larger amounts of whole foods.  This would probably make you feel better even if you didn't have unusually high levels of C. albicans in your system.  

Is there any kind of exercise that you enjoy for its own sake?  It's easier to get motivated to do something you enjoy.

I also have hPOTS, but my elevated NE seems to be a response to overly stretchy veins and blood pooling, and maybe some low blood volume.  My doctor prefers to diagnose based on symptoms rather than tests, so I can't tell you for certain if I have low blood volume.  I can tell you that florinef/salt/water was life changing.  I am also on clonidine, after trying atenolol and methyldopa.

Some of my joints crackle and pop, too.  I have no idea if it is related to having joint hypermobility or not.

I recently had some bad kidney numbers (creatinine and eGFR), but I retested after a week of aggressive rehydrating and the numbers went back to normal.

I take Wellbutrin as an adjunct therapy for my main ADHD medication.

I stopped using compression hose after I found out that changing my approach to salt loading improved my symptoms immensely.  For compression, I started with 20 mm Hg waist high, but I couldn't tolerate how the waistband rolled into a tube at my waist.  Plus, you have to pull them down every time you use a toilet, which means many times per day you risk putting holes in them.  I switched to 30-40 mm Hg thigh high, which you only have to mess with twice per day.  I used open toe, because I am very good at putting holes in the toes of my socks.  I found the cheap ones to feel terrible, but I have a long history of tactile hypersensitivity.  I prefer Sigvaris Eversheer.  Sigvaris soft opaque is acceptable, as is Juzo soft.  I have never used arm compression or abdominal binders, so I cannot comment on them.

For salt, I used to just salt my food.  Last year, though, I felt so terrible that I was seriously worried about continuing to work.  One day in desperation I drank a quart of Pedialyte, and I felt halfway better within minutes.  I drank a quart every day that week, and felt 100% better by the end of the week.  Pedialyte is very expensive, so I refer you to this website:  https://paleoleap.com/all-about-electrolytes/.  About halfway down there is a recipe for DIY Pedialyte, which gives you about the same amounts of glucose, sodium, and potassium for a fraction of the cost.   Apparently salt plus food is not optimal for absorption of the sodium through the intestine walls.  Liquid with glucose and salt works better for me.

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.  

I take Clonidine.  It does help me to feel like I have less sympathetic nervous system activity.  Plus, I don't have to pee every time I stand up.

I take Clonidine to keep my autonomic nervous system under control.  Also, Florinef/salt/water made the symptoms decrease as well.  It seems that my body cranks out NE in response to blood pooling and stretchy veins.

In this situation I would be inclined to keep taking them meds AND go on an autoimmune diet.  Readjust the meds if the diet seems to be helping.  And maybe give each doctor the other doctors' contact information and suggest they get together for a discussion about your case.