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Everything posted by DADofPotsSon

  1. About 15 years ago or more my Son#2 who has H-EDS and POTS had episodes of syncope in his sleep usually about 2:30 AM. This was first noticed in College by the doom room mate. Dr. Grubbs ordered a sleep study and it was determined he had episodes of Hypopnea during his REM sleep patterns and this was causing his syncope in his sleep. So not only did he have to deal with syncope while he was awake and vertical he had it while sleeping too. As we did some thinking it became apparent he may have had this in HS too, but undetected at the time. Dr. Grubbs added some medicines and did some medicine time changes too which seem to fix the problem. I sort of forgot about this but remembered it reading your post.
  2. My grandmother who had H-EDS and in her 40's had today what we call POTS had a hobby of genealogy, though I believe it was started by her mother. There were 4 large card board boxes known as egg crates full of her family history, and she even had many news paper articles and the most important item and that was the medical and or death certificates of many and known issues. I really do believe it was started with her mother. She gave the 4 boxes to me in 1980 and I have continued the tradition though it is now completely computerized. With the medical history I have developed many medical histories and it clearly shows many trends especially the H-EDS. I have traced it back in to the 1820's. Our family and cousins can be forever grateful for their work. By putting it in charts I have been able to statistically prove the ancestors where this problem came from. (Prussia) and can answer many family members concerns and questions on why they have problems, both severe and minor. Thank you grandma! She had it as a hobby but had no idea that the data could be so important to those who have symptoms of H-EDS
  3. About 18 or more years ago my son#2 began having seizures, and one time in the ER he had a second one, a retired cardiologist who came to the ER for a friend who had a heart attack witnessed my son#2 having a second seizure and ask if I was the dad, and then he told me that the seizure appeared to be more related to low BP or something like the heart and he had seen something in the past like that, and we should see a Dr. Grubb at Toledo or a Dr. Faoud at Cleveland Clinic. He was eventually diagnosed with POTS and as they eventually (over a few years) got his BP under control with Florinef, fluids, sodium, and a few other meds they mostly went away. Though sometimes he had just plain syncope when they started treating him, and eventually they got it under control.
  4. I have had Raynauds Syndrome for more than 20 years. I really love the outdoors and even in the winter, though it is extremely painful. I am affected in both fingers and toes. I have found by experimenting on where to put the heat packets that I can spend a great deal of time out doors. I have found that putting the heat packets on the fingers and toes did not help that much, but by putting them on the hand near the palm or in the middle of the feet which worked much better. My youngest sister has the same problem and she said she heats her car with the lower level and mid level vents on in the winter so she can alternate putting her hands up by the vents. I buy my vehicles with heated steering wheels, and is that a very nice option. They heat up real fast even in an ice cold car/truck. I do not have problems in the spring, summer, or fall. Of the 5 children only my youngest sister and myself have Raynauds Syndrome, and we got if from our paternal grandmother who had a lot of H-EDS problems including postpartum POTS immediately after my dads birth for about 3.5 years. Dad had Raunauds in his toes only, and I have a 3rd cousin whom I know very well and he has it in his toes too all his life!
  5. My Dr. prescribed PPI and I took it for about 2 months and then read an article on how chewing Eclipse gum can help so I tried that method instead and it does help! It is sugar free and that is good since I am a diabetic too. Maybe you could try it too? It is a cheap method, maybe it would work? They also told me to quit drinking coffee as that was a contributor, but that is not going to happen, been drinking it since I was 10 and I now am 67. DADofPotsSon
  6. 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.)
  7. 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!
  8. 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!
  9. 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!
  10. 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!
  11. 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
  12. 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.
  13. 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
  14. 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!
  15. 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.
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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!
  21. 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
  22. My Son#2 did this quite regularly, we even have proof he did it in his sleep too!
  23. 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
  24. 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
  25. 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.
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