Asking for help with various choices in Compression stockings

[brainchild]

I am newly diagnosed with POTS.  My cardiologist recommended compression stockings but his office won't prescribe them, lets the PCP do that.  I basically diagnosed myself and took myself to the cardiologist before seeing my PCP.  I have an appointment with PCP this coming week and hoping that he will script the compression stockings.  I'm the 5th POTS patient my cardiologist has seen - not sure yet on the PCP end.  So, I'm aiming to go to this appointment as prepared as possible, expecting that my doctor won't be familiar with POTS and I'll get better results if I make reasoned suggestions.  I've got multiple articles printed out for him as resources, in case this is new for him.  

I purchased a pair of waist high, footless stockings from Amazon (Discount Surgical, Absolute Support) at 20-30mmHg.  I have worn them for a few days and they're ok.  Trouble is, we're heading into consistent 80 degree weather and these things are just torture in the heat.  I don't have apparent blood pooling in my legs.  I haven't had any further diagnostics to characterize my POTS - so all I know is that I meet the heart rate increase with symptoms criteria. My primary symptoms currently are: widespread pain (especially in the thigh), lightheadedness, cognitive impairments, poor sleep, exercise intolerance, post exertional malaise, wide swings in body temp, inappropriate sweating.  I also have a history of low blood pressure - under 90 systolic.  

My main questions are:

1. Do people without blood pooling in their legs find benefit from wearing compression stockings? Is this a diagnostic marker for wearing them or do all POTS patients seem to benefit?  The literature seems to suggest for all POTSies.

2. Has anyone tried and found benefit from compression shorts, waist high, knee high? As in, do I need the lower leg compression if I don't have blood pooling? I'm hoping that I'll get benefit from the support of the veins in my thighs and lower abdomen.  I'm hoping to have a variety of effective options as we get 9 months of 90 degree weather here.  I'm hoping to get some guidance - I understand that this likely varies per individual.  

3. Any suggestion on fitting? I know that I will ideally have a professional fitting.  I measured myself and bought according to the size chart but I can't tell if the ones I have are too big or too small.  There is plenty of room in the ankle cuff and the waist (they lie flat on the skin, but there's tons of room to stretch) but the crotch keeps riding down.  I don't think I'm too terribly odd a shape or proportion.  

4. If my doctor is a newbie to POTS, any recommendation on 20-30mmgHg versus 30-40mmHg? I've seen both in the literature. 

In addition to the compression stockings, I've elevated the head of my bed, am eating 5.5gm salt/day, drinking 3L per day, am on low dose propranolol, doing supine cardio and strength training within my tolerance zone, I eat a whole foods diet, take magnesium and vit D.  I started most of these at about the same time and am feeling some improvement - so difficult to tell if what I'm doing for compression is making an impact.  

I did search and read through several pages of postings on compression stockings.  I appreciate any help!

Thank you!

 

[Pistol]

12 hours ago, brainchild said:

 

Dear @brainchild - welcome! I am sorry that you are unwell but it is really impressive how well you have researched this!!! - I am not able to answer all of your questions but some. 

12 hours ago, brainchild said:

1. Do people without blood pooling in their legs find benefit from wearing compression stockings? Is this a diagnostic marker for wearing them or do all POTS patients seem to benefit?  The literature seems to suggest for all POTSies.

Compression stockings are recommended for MOST Pots patients, except for those that suffer from excessive vasoconstriction ( like myself - I have hyper-POTS and Raynaud's and cannot wear them ). And yes - compression can be helpful for other reasons as well. 

In most articles they recommend wait-high since knee-high compression stockings still allow for some pooling. If you do not have pooling ( mind you - you may have it and not be aware of it!!! ) compression will help to prevent your BP from dropping.  But size and strength are up to your physician. 

12 hours ago, brainchild said:

. Any suggestion on fitting?

The best way to get accurate and individual fitting is by getting fitted by a medical professional, such as you find in any medical supply store. BTW - you do not NEED a prescription but if you have one your insurance may cover part of the cost. I personally would not go with online stockings for the first pair, I would get fitted for the first pair and when you have the right size you can maybe order the next pair online since you will know the size. 

Congrats to doing all the things you should do to minimize symptoms. What tests did the cardiologist order to diagnose you? And regarding the appointment with the PCP: since you have the diagnosis the PCP will have to inform himself about POTS. A good thing is that you have the cardiologist - he can work with your PCP. It is OK that the cardiologist wants the PCP to order certain things - that is what the PCP does. You can go to thedysautonomiaproject.org - they have a book that explains POTS to both doctors and patients - I gave  a copy to my PCP and the cardiologist had one as well. My PCP is wonderful - he did not know anything about dysautonomia but worked with me, treating every symptom as it came up and by now he is VERY familiar with POTS!!! I have found that some PCP's are more open to POTS than some cardiologists and therefore more helpful. Best of luck - and keep us posted on your progress!!!!

[p8d]

I have had success with thigh high 30-40.  They raise my BP about 10-20 systolic combined with fluids/salt etc.  I was professionally fitted.  I love Juzo brand.  I could/can only detect blood pooling after a shower when my lower legs turn red/purple but it must be there other times too.  

[brainchild]

Thank you Pistol and p8d for the information and assistance!

If I don’t have obvious pooling of blood, then how do I know if I have excessive vasoconstriction?  I don’t have Raynaud’s.  I do get amazingly cold hands and feet - and skin in general - even in hot weather. 

My insurance covers compression stockings 100%. Yay for that! I’d like to be as informed as possible and skip as much of the trial and error part as I can. 

I actually diagnosed myself and the cardiologist agreed. I did the NASA lean test a number of times at home, printed out neat charts of my results with accompanying info (on period or not, which arm used for BP cuff, symptoms that developed etc). His nurse did an EKG and the doc listened to my heart. They didn’t repeat any in clinic stand testing nor recommend a tilt table test. He did recommend a second opinion/visit with an autonomic specialist.  Now that I’m aware of POTS, I’ve had symptoms since I was a toddler. I just thought I was a weird kid - who knew it was a real health issue? So maybe those symptoms played into his assurance of the diagnosis. He ordered a cardiac stress test with echo. I just found out today that I get to pay the full fare as I haven’t met my deductible - $1000+.  Ouch! I’m hoping to get my PCP to do some kind of further diagnostics to help determine what’s going on with my ANS and therefore which treatments will be best for me.

Thanks again for the help. So thankful to have a supportive and knowledgeable community!

 

 

[Pistol]

@brainchild - according to literature the current recommendation for elastic hose is at least 30-40 mmHg ankle counterpressure, works best if waist high. Regarding the blood pooling or excessive vasoconstriction - the best way to determine that is by measuring your BP. In general blood pooling will contribute to hypotension OR tachycardia, vasoconstriction - in my case - causes high BP and tachycardia. --- The commonly ordered tests to determine dysautonomia are EKG, Echo, TTT, halter monitor, stress test. If I am not mistaken the TTT is the one that provides the actual diagnosis of POTS, I am not sure if it can be properly diagnosed without a TTT. Most patients have that test done initially. There are also other autonomic tests that can be done and are usually performed by a specialist. Like I said - it is very important to measure your BP and HR often since this is a good indication of what is going on with your ANS. 

[Lily]

I hate compression hose, but they do help.  Thigh highs have the benefit of not needing to be pulled down to use the toilet, but you might need a higher compression level for them.  All the good brands/styles that are made with comfortable fabrics (that don't make my legs itch and hurt) are expensive.  Your insurance may or may not cover them (mine doesn't). 

Open toe stockings are easier to put on, because you can get a little silky slipper sock thingy to help your feet slide in, and then pull it out through the toe.  Plus, toenails making holes in $100 stockings is more than a little annoying.  Many of the companies also sell rubber gloves to help get them on.  They prevent fingernail holes, too.

Colors:  Plain boring "nude" colored hose can be dyed with acid dyes if they are predominantly made from nylon.  I have done this a few times with Sigvaris Eversheer.  Either buy proper acid dyes from a company like Jacquard or Dharma Trading Company, or else use food color and vinegar.  Experiment on cheap nylon knee highs first, though, if you want a specific color.

Juzo has nice soft cottony fabrics in entertaining colors, and Sigvaris has a style called Eversheer, which is as close to nylon hose as I have ever seen, yet is still effective.  Those are my favorite brands, although I hate to wear them and do my best to avoid them.

 

[p8d]

I have a metal thing that the professional fitter sold me to get them on.  It’s very easy to use.  I posted pictures in a previous message some time ago.  You might want to do a search.  Juno sells tie dyed hose which are fun.  

I know I blood pool because BP drops initially on standing.  I have hyper pots because the longer I am upright the higher BP goes.  A catecholamine test confirms this.  Finding a good autonomic specialist will help but be prepared to do all the testing.

[brainchild]

Thank you @Pistol, @Lily, and @p8d for your responses and added information.

 

I must have the wrong size hose because once the ankle cuff is over my foot, I don't have much of an issue getting them on.  I don't feel the need for the silky sock nor the metal gadget to help me.  I'll hopefully find out more tomorrow.  I keep reading good things about Juzo and Sigvaris branded hose.  I appreciate the info on dying as the beige is plain and we only have long pants season for a few weeks. 

My BP vacillates when I stand, but only about 10-15 points either side of what it was when I was lying down.  It tends to go up those 10-15 beats, but fluctuates some.  I have had bouts of low BP.  I don't tend to take the measurement; I'll have to start doing that regularly.  I was refused being a blood donor once because my BP was below 90.  That was on a day when I was up and out and moving.  It was also below 80 one time when I was in the hospital.  So I've had health care personal with their machines record the low BPs.  I looked over the charts I took to the cardiologist and going from (systolic) 94 to 104, 110 to 116, 108 to 115 are pretty typical changes.  I don't believe that I have hypertension - I think 119 was the highest my BP has been.  I think any hypotension that I have is transient and episodic.  It certainly is not always present when I have symptoms as I had to stop several of the standing tests due to symptoms.  Once I get properly fitted compression stockings, I'll have to recheck the values for the stand test to see if they change.  

Regarding the TTT: I chose this cardiologist's office specifically because they had a tilt table.  Before my appt, I did lots of reading and what I found makes it sound like a TTT is not necessary for diagnosis, just meeting the criteria of the HR change without hypotension along with being symptomic while standing.  I even found some info that reports the stand test to be superior to the TTT.  My cardiologist didn't recommend the TTT and I didn't push it based on what I had read.  For further diagnostics, he did order an echo and stress test - but those will cost me $1000 (cashola, no insurance coverage for these pricey tests).  I'm hoping that I can use my money to gain information and get results in other ways.  I'm waiting on a call from the cardiologist to discuss this point.  I am also on a waiting list to see an autonomic specialist.  I'm considering a consult with Dr. Blitshteyn as well.  

[Pistol]

@brainchild - you are doing such a good job researching and advocating for yourself! I hope all will go well and you can find relief. Keep up the good work!!!!!

[JimL]

 had DVTs in my right leg over 25 years ago and I have worn knee high compression stockings since, or at least up until the POTS fiasco. I used Mediven with silicone band, 30-40mm. Mediven makes sturdy compression stockings. I wear knee high now. I forget the brand as I got them through walgreens, but they aren't the same. I will look at getting measured for thigh high open toe soon. The ones I have now are closed toe, which I hate.