DADofPotsSon

I know there is a lot of comments above on not taking Midodrine just before bed. But, I can offer a case in which my Son#2 who had POTS, and had too take it at about 12:30 AM. He would set his alarm if needed but usually as a college student he was still up doing homework at that time. He actually took Proamatine as he did not respond very well to Midodrine, this did cause quiet a panic to my health insurance company because the cost was an additional $1500 per quarter. (12 years ago) In order to get the prescription it required a letter from a Dr. in Toledo, OH. Usually at 02:30 he would have a bout of Convulsive Syncope as witnessed by his dorm room occupant and us when he was at home. After a sleep study it was determined that his BP would drop to 70/35 during his REM sleep, possibly due to Hypopnea. So after sleep testing they had him take at about 12:30 A.M. a proamatine dose (can't remember the amount). Anyway in short it stopped his middle of the night Convulsive Syncope. We did do some BP monitoring at first but he did not spike. Today he no longer takes Proamatine or Midodrine, but does take an antiarrhythmic, Florinef, salt, fluid. He used to keep Proamatine on his cars dash and sometimes even on the floor.😞 He is now a Civil/Environmental Engineer with a PE license, but still has very mild POTS symptoms due to H-EDS. (My Paternal Grandmother had something similar to POTS at age 41 but during those years they did not know what it was, she had similar to H-EDS issues with her joints too.)

DizzyGirls, that is exactly how they control my Son#2 seizures! About 12 years ago by a well known POTS Dr. in Toledo! Though the emphasis was on and still on, keeping the blood pressure up using florinef, salt, and fluids!

My Son#2 has the same thing as Pistol, his is currently under control by using lots of fluids, florinef, salt, midodrine and dilantin. Though he said the fluids are the most important!

I have had that exact pain for many years, though I do think it might be related to my mild asthma? I have noticed some relief when using albuterol inhaler. The Pulmonologist & Cardiologist do not seem to be worried about it. Though both say it is Lung related? It seems to be worse in the very cold or air conditioning. Sometimes it can be a bit scary or cause me panic!

My grandmother was bed ridden for 3.5 years postpartum with the birth of my father which was in 1928, only thing she told me was the doctors thought or called it soldiers heart? She had a miraculous recovery only to find out she was pregnant again, though the problem never returned. She had very bad H-EDS symptoms including OH and at age 95.9 when she died there was not a good joint in her body, but what a sharp mind! . She had the typical other symptoms of H-EDS though never diagnosed. My dad was the only one of the 5 children who suffered with problems of H-EDS thought not diagnosed, his doctor said he surely had some type of blood pressure (OH) and joint problem, my son#2 a POTS sufferer and my youngest sister were both officially diagnose with H-EDS. Though Dad's 1 sister did have problems with subluxation of her toes, of which I do too! So, it is possible you can go from bedridden to somewhat of a normal life!

I bought one in 2010 for my Son#2 who has POTS and it was for his wedding use, he was the coolest dude at the Summertime Wedding, it was over 100 F in an outdoor wedding with very high humidity. He was so impressed that he wore it later when visiting construction sites as he was an engineer and had to go out to the sites once in a while on very hot days. He had it for many years and eventually it wore out. He made it thru the wedding with out passing out, can't say the same for the bride! I brought it to the wedding in an ice cooler, and only recharged it once during the day. DADofPotsSon

Of my Fathers 5 children only 2 have Raynaud's, of which I do and I am the oldest and no. 5 o 5 my youngest sister. Both Dad and his mother had it too and they also had H-EDS. My youngest sister has H-EDS, Dad, grandma, and myself and so does mt son#2. Only Grandma and my son#2 had or have POTS. I once had a car with heated steering wheel, was that awesome. Also the air conditioner vents blowing hot air is the best thing. BUT I STILL LOVE WINTER.

There are/were 4 who in our family that have been diagnosed with H-EDS but only 2 of those who have/had POTS! No correlation, What! But to clarify there are probably more than 8 with H-EDS but only 4 who have real obvious signs and 2 confirmed. DADofPotsSon

I too had low B-12 and caused balance issues big time! It was difficult at first because the doctors first seem to think it was caused by a stroke, but as time went on and my constant request the did blood test and found my B-12 extremely low. I was given a few shots and put on a daily supplement and nearly a year later I was near normal again. I could not even look up walking as I would fall down. If I was heading out to my workshop 150' from the house and I would close my eyes I would end up back it the house doing a full clock wise circle. Mine was caused by a combination of H-EDS and being a diabetic too. I was on Metformin to help my diabetes which is known to lower the B-12, it seems like I should have been tested for B-12 on occasion during my diabetes treatment. Anyway, nearly back to normal!

My grandmother who had EDS (H) had postpartum POTS based on description from her and my aunt when my father was born in 1928, (she was 41) she had immediate relief when she became pregnant with my Uncle 4 years later, and it did not return after his birth. Though all through her remaining life she had EDS issues and still lived to be 96. Of the five children my dad did have life long hypotension and orthostatic hypotension with occasional syncope. Of my dad's 5 children only myself the oldest and the youngest show signs of minor EDS. My son#2 has full blown EDS (H) and POTS for most of the last least 15 years. My dad was raised by his grandmother for his first four years, she also had EDS issues based on his and my aunts descriptions. I have one first cousin who has minor EDS issues and also one first cousin one time removed. So in our family POTS did show up postpartum once a long time ago. I do remember grandma complaining that she was stuck in bed for 4 years and the doctors told her it was her heart! Now we know better.

Raynaud's is this what your thinking? It is when your fingers or toes become very cold and may change colors. I have it, and my youngest sister has it too! We both have low blood pressure and mild H-EDS

Mark P. I have very mild dysautonomia and type II diabetes, my Dad, Grandmother and Son #2 all have severe dysautonomia, and Dad had type II diabetes as well. Though with us our Blood Pressure is on the low side, but HR is on the high side, and Yes, it does cause grief with exercise. Your brothers BS level at 14.4 is on the high side, He can reduce it without exercise by diet and medication very effectively, though exercise is the prefered and recommended method. The type II in our family is heredity type (grandpa) as is the dysautonomia H-EDS (grandma). I do use a combination of medication, diet, and light exercise to keep my Blood Sugar levels in a very good range. My Dad did the same

A young neurologist did try Keppra on my Son#2 and he had many more events so it appeared to increase and to make the events more severe, so very old neurologist suggested dilantin usage rather than Keppra (I believe he had mentioned that he had success with it before on a POTS patient, but more as a class b antiarrhythmic which did stop the convulsive syncope. He has since been taken off the toprol as the doctors feel the dilantin controls his heart better. He claims he has not had any SVT's since being on dilantin. It also stopped the restless leg syndrome. DadofPotsSon

My Son#2 had this problem for many years, probably 10 years, though after many MRI & EEG test it was determined that his was convulsive syncope, but once in a while the CS events were back to back sometimes they would convert to a Grand Mal seizure. They found if they control his BP or keep it up, it reduced the CS events. His meds are florinef, Toprol XR, and a low dose of dilantin. DadofPotsSon

This post reminded me of funny story that happened to my Son#2 at college: It was about 1 am and he was getting ready to take a shower, turned on the hot water and closed the shower curtain so as to warm it up a bit in a cool shower area in January, several college students were in the shower area too! As he opened the shower to adjust the water temp. the steam hit him in the face as witnessed and the syncope hit him, down he went. This was observed by several college students and the word got out that the hot water or steam was probably toxic, so no one at the university would take a very hot shower in that dorm, and the word got out very quickly. LOL! They University had to put out a notice that the hot water was safe! The not so funny part was when I went to pick him up at the hospital and take him back to college he had no clothes just a towel and it was about 10F outside. Needless to say I gave him my coat and shoes, he wore the towel around his waist and I walked to the car in my socks! Good thing is I had a remote starter to warm the car up. This happened about 8 or 9 years ago! moral of this story to him was keep your shower water cool!

About 8 to 10 years ago my Son#2 complained of this, and he then had a sleep study and it was determined his oxygen level and blood pressure both were very low caused by Hypopnea and they said he did not have sleep apnea. We also had confirmation of this thru his college roommate who was up up very late studying and said he had mild convulsive syncope in his sleep on several occasions usually about 2:15 to 2:30 AM. It was a normal thing when he had syncope to have mild convulsions. He did complain of this during High School but we just disregarded this as lack of sleep or poor sleep issue. It was corrected when he went on Florinef! DADofPOTSSon

My Son#2 did this quite regularly, we even have proof he did it in his sleep too!

My Grandmother, her sister and my Dad all had H-EDS and had hearing loss requiring hearing aids, all did turn gray in the very early 20's too! Hearing loss started in their early 20's as well! So far my Son#2 who has H-EDS and POTS does not appear to have hearing loss! I have a first cousin who is now 67 and has had lifelong hearing loss but does not require a hearing aid. Dad had a second cousin in the same family group as his grandmother who turned gray in her very early 20's and also had hearing loss requiring a hearing aid. DADofPotsSon

When my son#2 went to college he had a room mate the first year but the 3 years after that they put him in a handicap room. Even though he was slightly over 1 hr drive away I did make sure we communicated quiet frequently during each day. I used txt messaging, icq and phone messages. He would call when he was not feeling well. I could even tell by his messages how he was doing. I made a point to connect with the campus security and used them quite often to check on him too! I could call them and they new me by first name basis and it was all great and it eventually helped in him at college. You just have to put a program of contacts together and keep in touch and if you do not respond in a designated time frame then you need a plan on someone to check in on you! DADofPotsSon

My Son#2 has this problem since age 15 and he is currently 29, keeping the blood volume up seems to help the most, lots of salt, fluid, and florinef.

I bought one for my son#2 a little over 6 years ago for him to use on his July 31st golf course wedding in Cincinnati! Temps were in the upper 90's and he was the coolest person there. He did use it when inspecting construction sites quite frequently and loves it. Though it is due for replacement. His usage was more than likely above what it was designed for, but it sure works. DADofPotsSon

He is on toprol xr and dilantin both to fix his HR and arrhythmias. His sodium was very low too so that is where the florinef comes in. The dr's had us wake him for a few weeks at 1 AM and have him take midodrine which eliminated his nocturnal events during that time. I guess that was to keep up his BP and see if the nocturnal events would stop which they did, but the frequent BP test made us a 3 shifter, LOL. His current drug combo is Toprol XR, Dilantin, Midodrine when needed, Florinef. Lots of Salt and Fluids. DADofPotsSon

more of a test ref to explanation and report to his doctor, what really helped is two things, biggest was florinef and then the addition of dilantin which was used as an Antiarrhythmic. It appears his BP just dropped to low at night and this included his HR and oxygen level too!

Yes, he did have similar type of muscle tightening and yawning! He was told that he had no obstructive airways, he was slightly under weight! Now normal weight! during the sleep test his hypopnea caused his BP to drop and his Blood Oxygen to drop too! Florinef has stopped these events due to a rise in his BP Prior to florinef his average BP was 90/60 and now it is 130/80, his middle of the night BP during the times of his nocturnal events was 77/45, his HR really dropped too!

My Son#2 has had these nocturnal events quite frequently beginning at age 17 thru age 24, he is now 29. Usually we did find that his BP dropped very severely prior to and during these events. He has convulsive syncope as well and this seem to bring them on. Normally between 3:00 and 4:30 am. He even thought and I agree he had syncope during this time and on a few occasions he had convulsive syncope. He had sleep test done and they said he had Hypopnea and was the probably cause of his nocturnal events. DADofPotsSon