Lily

I'm seriously considering embracing it and converting to a biphasic sleep schedule. Plan for 4 hours of sleep, then 1.5 hours of awake time in which I engage in mental prayer and rosary, and then another 4-hour sleep period. The down side is that I will need about 10 hours of bed time to account for the wakefulness period. Has anyone else tried this? I read that the medieval Europeans slept like this, and it is why monks and nuns had a Liturgy of the Hours session in the middle of the night.

Hi there!  I haven't posted in quite a while, but I'm back because I would like to know if anyone has information that will help me with sleep.  I fall asleep easily, but often wake up after about 4 hours.  After about a minute I realize that I feel way too hot.  Usually it takes at least 90 minutes to fall back to sleep, and that sleep is usually light and fragmented.  Does this sound like a POTS-related pattern to anyone?  If so, can you point me toward resources that will explain the mechanism?

How much does Florinef depress the immune system?  I have gotten conflicting information from the internet versus my doctor.

ADHD is much more than brain fog, so I am not convinced that POTS causes ADHD.  Surely POTS can cause some symptoms that overlap with ADHD, but not all of them. 

I have had ADHD symptoms back as far as toddlerhood.  I was diagnosed in my teens, but nobody thought to try medication until much later.  I didn't have any symptoms consistent with POTS until about 3 years after I started taking Strattera, a non-stimulant ADHD medication.

I recently switched from Strattera to Adderall for ADHD.  Interestingly, I am feeling 100% better POTS-wise.  I do not know if it is because I am no longer taking a norepinepherine reuptake inhibitor (NE was leaking out of the synapses into my blood perhaps?), or if the Adderall is helping my poor deficient veins to constrict properly.  Both are possible.  Adderall has fewer side effects than Strattera, but I liked the 24 hour activity of the Strattera.  I'm learning to deal with it, though.     

Yes, the meds he prescribed and the lifestyle changes he recommended have been helpful in decreasing symptom severity.

I see Dr. Tullo.  He's great.  

I have always been able to see surface veins (very light skin), but when I stand up you can see the veins in my feet distending and standing out from my skin.  Its pretty nifty to watch.  My hand veins do it, too.

Interesting.  When I overdo it, I get all the physical symptoms you mentioned but not any emotional symptoms.  Just normal annoyance at my body.  When I do get depressed is during a migraine.  

I would tell all this to your doctor at your next appointment, or even call and leave a message about it today.  You made a reasoned decision to try Midodrine, and it doesn't work nearly as well as Florinef, and you want to go back to F.  Since it works so well for you, perhaps increased attention to weightlifting and intake of calcium, and vitamins D and K would be a reasonable alternate to not taking it.  My mom managed to reverse osteopenia by eating lots and lots of dairy products, so surely we younger folks can, too!

I take the XR version, which lasts for 8 hours or so.  I also take Wellbutrin, and taking a non-stimulant along with a stimulant can help decrease the necessary dose and also make the wear-off period more gradual.  I usually do not notice when it wears off, but it is noticable when it gets to my brain in the morning.  

I take clonidine to knock my sympathetic nervous system down a little.  

I'm also on Adderall, which is in the same class as dexamphetamine.  It works well for my ADHD, and I think it helps my poor deficient blood vessels to contract more than they otherwise would.  It does not cause tachycardia episodes for me.

I tend to have sleep maintenance insomnia.  Why?  Stress is definitely a factor, but also I'm in perimenopause, I have to pee frequently (I take desmopressin at night for that now), and I have 2 cats.

I have ADHD.  The medications help immensely.  It is all about executive functioning.  With meds I can easily see how tasks should be prioritized.  It is much much easier to get started on tasks, too.  It is easier to not be impulsive and to sustain my attention span on only one thing at a time.  Everything is clearer.  ADHD symptoms feel very different than POTS-induced brain fog.    

Probably you should do whatever you can, even if it is only the tiniest amount of recumbent exercise.  Alternating leg lifts while lying down, add one more each day.  Something like that is better than nothing.  You might feel terrible at first, but exercise helps in a long-term manner if you're consistent.

I downloaded it and read it with interest.  The focus on heart rate zones and the use of different zones throughout the week is consistent with various training programs I have seen in other contexts, such as training for a race.  I didn't see anything in the document about where to start if you already can do upright exercise.  Or is this protocol only for people who are quite badly off?  All my doctor told me was to do "cardio against resistance" and to work up to 30 minutes 3 times per week.  When I said that I can already do that (although I am very inconsistent at actually doing it), he said I can just exercise however I want to, as long as I keep doing it.  Now if only I can figure out how to get myself to exercise consistently....

I spent some time at 7,800 or so feet last summer with 2 other POTSies and 5 non-POTS people.  All the adults got a bit of a headache and were more easily winded than usual for a day or 2, and that was it.  Kids did not seem to be affected at all.

Scout, as for how to move forward, my advice depends on whether or not you share living quarters with the difficult people.  If yes, you will have to keep educating them and advocating for yourself.  If not, stop talking to them about it and just do what you need to do.  In both cases, you might be able to help yourself with some stress by deciding that they are not capable at the moment of giving you what you need (affirmation, believing you, etc.), and stop wanting it from them.

My plasma NE was very high during the TTT, but my doctor thinks it is in reaction to low blood volume and blood pooling rather than primary hyperPOTS.  Florinef helps me feel much better.  Whether it is for you or not depends on the mechanism that causes your POTS.

It keeps my sympathetic nervous system in check.

It might also help just to remind yourself that you are not psychologically anxious, but rather your body is malfunctioning.

You might try drinking your sodium.  Mix up a teaspoon of table salt (for 2.3 grams of sodium) in a glass of water with maybe 1/4 cup of juice.  You can also find recipes online for oral rehydration solutions like the WHO uses.  I have posted my favorite several times here in different threads about the topic.  It will taste nasty (until you get used to the flavor!), but I have found that getting my salt this way is much more effective than salting my food.  It made a huge difference in how I feel.  

You can also get potassium from low sodium salt.  It used potassium chloride instead of sodium chloride.  Perhaps consider mixing the two together in your salt shaker.

On 7/23/2018 at 10:16 AM, Alystew said:

Anyone personally or know people who have mild pots and live a normal life? Kids, work, outdoor activities? 

Yes, I fit your request!  I'm a 46 year old tenured college professor (so employed full time +).  I have 2 cats, no kids or spouse, and my only limit on exercise is difficulty keeping up the habit of doing it.  I have never been bed ridden or house bound due to POTS.  Constant grinding fatigue, yes.  Inability to live normally, no. 

POTS sneaked up on me gradually rather than starting suddenly after an illness, and I suspect that the Strattera I was on for ADHD might have had something to do with it (or at least the hyperandrenergic part, as Strattera is a norepinepherine (NE) reuptake inhibitor and too much NE in the nerve synapse can leak out into the blood stream).  I thought last year that my POTS was getting worse, but now that I am on Adderall instead of Strattera I suspect that the Strattera was jacking up my sympathetic nervous system and complicating the POTS.  Or maybe the Adderall is helping my poor deficient veins to constrict appropriately.  Even though my plasma NE was very high during the tilt table test, the treatments that have helped me the most are the ones for increasing blood volume and controlling blood pooling.

My job requires at least some standing, but I have the flexibility to teach while sitting if I like.  Lectures are more sit-friendly than labs, but so far I have been able to make it do-able.  My research is primarily in salt marshes, which results in low level walking and carrying once in a while, followed by laboratory analysis.  I regularly work with my feet up on my desk in my office.  I am on several medications plus a high salt diet.  Compression hose helps, but not enough to make me want to wear it.  Abdominal compression alone actually works better (I just use normal high waisted panty slimmers, not medical gear).  Summer is a bit difficult when the heat and humidity are both high, but every building around here has air conditioning.  For exercise, I am capable of doing 60 minutes of low level cardio, but I prefer weighlifting, outdoor cardio, and evolutionary fitness.  My POTS doctor said I can do whatever exercise I like, as long as I exercise.  

In short, my POTS does not seem to be getting worse and I can live normally.  You are not necessarily doomed to getting worse either.  Also consider that if you search the internet a bit you can find some POTSies who run marathons and stuff like that.  It seems to me that the worst thing you can do when you have mild POTS is to stop exercising and rest a lot.   

Adding to the data: I do not have problems flying as long as I drink enough water.