DADofPotsSon

You could have them try Dilantin as it was the only drug that worked for my son#2. He still is on it today, and it works to keep his heart rate steady too! I think it was originally developed for the heart? He has been on this drug for nearly 15 years? I do believe he is on a OTC supplement for keep his bones strong due to the Dilantin. DADofPotsSon

I guess that after this first post I can finally be assured that my family with 5 generations of POTS over 200 known years it can be noted that all of this is in our heads. Even my youngest sister and my youngest son who have confirmed cases of POTS due to H-EDS is all in their heads! I must point out that thru my research in Genealogy over 55 years I have found and traced this ancestor descendants and have found H-EDS and some POTS problems in out to 5th cousins. He and his brother passed this on, though the funny thing is the sisters did not. I am sorry but I do not agree with the hypothesis in this article! DADofPotsSon

Both my paternal grandmother and my father had a hiatal hernia, grandma's was quite severe, both had H-EDS and grandma had POTS for a few years in her life. I have a younger sister who has H-EDS, my youngest son who has H-EDS whom also had POTS in his life too for a few years, though neither of these two have a hiatal hernia yet. I am over 70 years old and just started having serious acid reflux, and HH has been mentioned as a possibility though no testing yet. One of my brothers is starting to have acid reflux issues too! 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.