DADofPotsSon

In our family it was my Great Grandmother, Grandmother, Dad who all had various aneurysms, all had the AAA's and also one at the heart. In fact Dad had 3 AAA's. All had H-EDS. Now in current generations my youngest sister and my Son#2 all have H-EDS. Grandmother and Son#2 had POTS at one time. Youngest sister also had a dissection of the vertical artery in the neck she was cared for at CC. Test were done by Dr. Grubb on Son#2 and Cleveland Clinic on my sister to make sure they did not have V-EDS and it was determined they did not. It was said they just have H-EDS and it was an anomaly crossover. Great Grandmother, Grandmother and Dad all lived to over age 85, in fact grandmother made it to 95, even with H-EDS, her body was shot but her mind was excellent, it was hard to see her suffer. I am 70 and only have two joints on my body that dislocate easy and I also have Raynauds, but so far no AAA. All who have H-EDS have low to very low blood pressure too! DADofPotsSon

Both my youngest sister and I have Raynauds and neither of us will buy a vehicle that does not have a heated steering wheel. I use mine all the time!

Yes, my doctor seems to think that it is caused by either dehydration or blood pooling or both! And of course my HR does go up when the BP goes down (62-72 to 112-135). He did suggest that I try counter maneuvers but they don't seem to help, but drinking a lot of fluids does. I guess I just need to watch my fluid intake! Since most of the time it happens in the early morning I changed my morning coffee to decafe and I had no change. I have had this problem for nearly 40 years, but in the last 5 years it is more frequent. I have noticed recently a fluttering in the chest, I immediately check my BP and it is always low, so I drink a lot of fluids with salt and it seems to stop the event from going any further, this is even before the icy feeling in the lungs. DADofPotsSon

I get this once in a while (usually about once every other month) and when I do my Blood Pressure is usually below 100/65. It has been happening for over 40 years and I am 70. It seems the only thing that helps in drinking a lot of fluids. Doctors have ruled out it is a heart issue. They seem to think it is dehydration or blood pooling. H-EDS is in our families thanks to my paternal Grandmother. My normal BP average is 120/72 at the doctors office though I have had really low reading too. H-EDS is common in our family, Grandmother, youngest sister and my Son#2 also had POTS. DADofPotsSon

MikeO, you might ask your doctor for a seasonal prescription trial for Singulair(Montelukast). My Son#2 does this and it works great for him spring & summer. I take it year around because of allergy induced asthma. My allergy is completely under control and so is my Son#2 and neither of us have asthma anymore. If a person has a break thru in allergies they also have Singulair with added Claritin. Son#1 takes only Claritin but he has quite a few times when it is not enough. I have been on it for over ten years and I get a break thru maybe once or twice per year, but it is very mild with just a runny nose, just in the spring. I think one time I had eye itching. Some have reported irritability for a week or two when starting it and my Son#2 has had this twice in the spring when he starts it. He has been on seasonal Singulair for more than 5 years I started having allergy problems at age 5 and asthma at age 7, and I have been dealing with this for 65 years.

More than 15 years ago my Son#2 who at the time had POTS, had occasionally at about 02:15 to O2:45 a seizure while in his sleep. This started when he was about 18 years old. This went on for about a year or so and Dr. Grubb ordered a sleep study. The results showed it was caused by Hypopnea in the deep sleep. When this happened his blood pressure dropped into the high 70's over low 60's. DADofPotsSon

https://medicalxpress.com/news/2023-04-vitamin-deficiency-double-jointedness-hypermobile-ehlers-danlos.html

He is an Civil & Environmental Engineer at a large national firm, is a department chief & is licensed in 4 states. Now he just has low blood pressure, occasional dizziness and very minor brain fog, but still on Florinef for POTS symptoms and also on seizure meds. I think it has been between 12 & 15 years since he had full blown POTS of which he had it for 3.5 years. He still has to drink a lot of fluids per day and is on a heavy sea salt diet. He does the same as my paternal grandmother always did. Is He fully recovered, No! But has it under control! His worst peak was late in his senior year at high school and during the first years at a University. He was very well known at the Hospital ER. Campus Security had my number in a speed dial, I had quite a laugh when they told me that. DADofPotsSon

Follow Pistol's post and use it as advice! My Son#2 had the exact same problem and as always the EMT's bringing him in to the ER always gave a regular IV, once in the ER they would then give him saline, and if he still need a little help then one with the electrolytes, then usually he would be like nothing happened and was ready for discharge. Of course this was all 12-15 years ago. DADofPotsSon

Knellie I have been on Singulair for about 10 years. I have allergy induced asthma and only in the spring to mid summer. I also have mild athletic asthma too! My Son #2 is on it as well, has the same symptoms and BTW he had POTS 12-15 years ago. My irritability lasted for a few months and now it does not bother me, my wife let me know when it was affecting me! She kept calling me a grumpy old man. But then again I was really irritable with the allergies. I did go off it once to see if I still needed it and I had no reaction, unfortunately my allergies returned so I went back on it. Since I am near 70 years of age I am not sure how long I will need to be on this, went to the asthma doctor last summer and he kept me on it for a few more years, I have had allergies and asthma since age 7 and singulair is the best thing I have ever taken. All I know is that it works and it takes quite a bit of time for the side effects to pass. DADofPotsSon

JBG, your question: "I am wondering if anyone else has this combo of disorders, and has had any luck treating them together?" My son#2 did, actually, he had 4, EDS-H, NCS, POTS and anoxic seizures. He lived on Midodrine, Fludrocortisone, Toprol XL, and Dilanton for anoxic seizures. His improvements to a eventual normal life were the result of a few very good Doctors. We started out with the Cleveland Clinic and then to Toledo Hospital due to a 30 minute drive. This was more than 10 years ago, probably near 15 years. DADofPotsSon

Though not officially diagnosed my Paternal Grandmother had post partum POTS in 1928 at age 41, this is when my Dad was born. The information to support this was given to us by my Dad's sister who was about 15 years older than my Dad. It lasted about 3.5 years and then she became pregnant again and the POTS never returned. She did have life long EDS-H and lived to age 96. Grandma died of Leukemia. My aunt also said that her grandmother had EDS-H related problems too! My Dad also had EDS-H problems and lived to age 86. EDS-H shows up in the family but is random and infrequent.

@MikeO, From what have researched CEYLON CINNAMON does not effect the liver and works the best on blood sugar control. Apparently Cassia Cinnamon can cause liver problems due to coumarin content. Scientists say Ceylon cinnamon is likely safer in very high doses than supermarket cinnamon. Ceylon cinnamon is the only true cinnamon and the Cassia (Chinese) cinnamon sold in stores is merely a cheap impostor and even dangerous to consume, according to what I have read. Here is a really good article on cinnamon: https://diabetestalk.net/blood-sugar/which-type-of-cinnamon-is-best-for-diabetes DADofPotsSon

MikeO, You might try Ceylon Cinnamon Gummies about 2000 MG with 100 MCG chromium. I have been using this for several months and it has really lowered my blood sugar/A1C readings, nearly like metformin. It takes about a month to start working real good. It has many other benefits too! I would suggest you do some research on it. I did and now I am very pleased with the results. DADofPotsSon

My late father who had dysautonomia also had blood sugar problems. He reduced his weight from 230 to 190 lbs, reduced his carbs, took 2000 mg of ceylon cinnamon morning and night, and took a daily walk even up to age 83 and his blood sugars were about 110 both morning and night, he switched to a stationary bicycle at age 83, and eventually a resistance pedaling device at age 85 that he could use from his chair. If his evening blood sugar reading was above 115 he would say darn it and drink a low carb beer, which sometimes I think he always wished for higher reading! This would lower his BS readings real fast, though one has to keep and eye on it so it don't go too low, his never went too low. The cinnamon method works on some people and not so well on others, I do not get the benefits of cinnamon like my dad did, a little but not enough. DADofPotsSon

About 15 to 18 years ago my Son#2 had POTS/NCS and the Doctor suggested he try some swimming. So being in his first year at College he had access to the pool. He began daily swimming in the early AM prior to his classes and it was extremely helpful. The doctor suggested he have someone with him when swimming and at College that was not a problem. Overall it was very helpful. DADofPotsSon

My Son#2 for many years had seizures (grand mal type) with his POTS, age 19-26. Mostly always at 2 to 3 AM, though on rare occasions in the evening. His was as Pistol said caused by the lack of blood flow to the brain. Keppra made his much worse, so they switched him to dilantin and that seemed to work. They also said the dilantin regulated the heart much better so they were able to take him off Toprol. Also they put him on Florinef and IV's as needed as his BP was usually 90/60 but sometimes it went as low as 70/40. When this combo was completed and in his system for a few weeks the seizures stopped and so did the syncope. Of course he does the normal POTS thing by adding sodium and drinking several liters per day, he is now 35 and a registered Civil Engineer. He like my grandmother, Dad, and one of my sisters deals with H-EDS issues. My paternal grandmother had post partum POTS (as described by several) after the birth of my Dad. She had it for 3.5 years and only was cured by getting pregnant again, POTS never returned but she did have very low BP the rest of her life even up to the old age of 95, and always dealt with H-EDS issues (quite obvious and as described by several) DADofPotsSon

I can provide my comment here from experience as I have had H-EDS for many years with on a very few occasions POTS problems, and I have been a Type II diabetic for >10 years and I am 68 and at my BMI, very fit due to working out, I also have Raynauds. I recently within the last week had a two day POTS event, low BP with high Pulse. I get this a few times per year. When ever this happens I have a large and uncontrollable amount of urine and it is usually very clear, usually several times in less than an hour maybe even 30 minutes, large volume and often. All during the Low Blood Pressure and high heart rate event. While I do have increased urine due to diabetes it is usually darker yellow and it is usually later in the night or evening. A little family history: Paternal Grandmother very severe H-EDS with post partum POTS for 3.5 years, father H-EDS NMH and micturition syncope, youngest sister NMH, H-EDS, Raynauds and vertical artery dissection, youngest son H-EDS 8 years of POTS NCS. The type II diabetes came from my Paternal Grandfather. Normally when the POTS symptoms hit me I start a H2O drinking regime with vitamins to offset the loss of fluids. I have been successful in shorting the duration of the event. DADofPotsSon

When my son#2 was in college his POTS was at its peak, the campus security became my best friend, as I had them in my speed dial, along with messenger on the computers that he had to respond at specific times. I could tell his condition by his message the way it was worded or spelling. It took him 5 years instead of the normal 4 years due to a reduced work load.

I agree with MomtoGiuliana that one with EDS can have gum/teeth issues, though do not rule out grinding teeth at night. Several in our family who have H-EDS have night guards to keep a person from grinding their teeth. Night time teeth grinding will loosen teeth and also cause bleeding gums etc. Ask your dentist to look for signs of night time teeth grinding. DADofPotsSon

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.

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

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.

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!

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