DADofPotsSon

My Son#2 who has HEDS/NCS/POTS, was/is a goalie and played hockey through high school, college and now as well. The ice time seems to work great with his conditions. The only time he has had syncope related to sports was during the off season and he was playing hockey on rollerblades, and unfortunately one of time he had syncope after standing up straight, leaving the goalie box he fell over and broke his shoulder. He is 26 now and still deals with HEDS/NCS/POTS but it is regulated for the most part.

From the email of Son#2: Richard W. Henthorn, MD cardiologist at mercy hospital in Fairfield OH, Neurologist - Dr. P. Scott Becker, runs his own practice in Crest View Hills, KY He is also under the care of Dr. Grubbs in Toledo, OH

I will contact my Son#2 by email and see who his local Cardiologists EP and Neurologist is, he lives in Cincinnati, OH, and He does have H-EDS/NCS/POTS.

I and my youngest sister have the raynauds and have had it for 2-3 years each. EDS is suspected as the cause, and the only one item of EDS we have. Grandma had very severe EDS, Dad (85) has it good too, and my youngest son (26) has EDS/POTS/NCS. By accident I have found that a very very small glass of wine will knock it out very quick. hmmm I guess it must relax the body? Also I keep a heating pad at my desk for my right foot toes and only the right foot. Warm water helps the fingers. I still love it outdoors in the winter and will continue but now need to take many precautions.

jkoconne it does appear to be similar to type II, and of course that is what I am. those numbers appear to be much like what I did see when I started testing. Wait until you get your A1C test before going forward with an diet changes, and if it is above mid 6's then they should give you a prescription for testing. I would also recommend to keep away from high fructose corn syrup, and reduce your carb intake. If needed check out diabetes daily which has a good forum for extra help. I do manage mine well with diet and excersise as does my 84 yr old father, (HEDS/OH) so as you can see mine is hereditary and somewhat mild. My A1C now usually runs 5.5 to 5.9. It only affects the males in our line but we have some distant cousins in central IN, that it does cause problems in the females at as early as age 20. I have joked with them that it may be their indian blood in their ancestory, that is causing the females to have the problem in the very early 20's, who knows? I do otherwise have HEDS though very minor and Raynaud's syndrome, and my son#2 has HEDS/NCS/POTS but no diabetes so far. Good luck DADofPotsSon

My son#2 has had some seizure activity with his NCS/POTS since age 16-17ish and he is now 26. He has always had these when he is hot or in a really warm room and his BP always is very low along with being dehydrated. Sometimes he will get these at night sleeping usually 3 am or later and as all monitoring shows his BP drops to a low level and then he can just pass out or at times he will go into a seizure. These type of seizures are not epileptic in nature but are more related to an anoxic condition and do appear to be different and sometimes the doctors call them convulsive in nature. He has had a lot of testing at various hospitals and Universities and all have concluded it is blood pressure/flow related. His meds are florinef, midodrene, salt loading with fluids and when they are frequent, dylantin is added. If he has too many of these convulsions in a immediate time frame they will usually crossover to a grandmal, so usually IV's are immediately applied to stop the convulsions to prevent the crossover to full grandmal seizures. The key to preventing the syncope/seizures are to keep the fluids up, the BP up and keeping him cool. DADofPotsSon

K&ajsmom, I have worked on my family history and genealogy for 35 years after being given my grandmothers and grt grandmothers research. In the late 1980's and 1990's I built several large cardboard boxes of data into a software program. One thing I noticed was they did have a lot of medical information on family members and most which was of the recent 75 years also having death certificates. I did add all this too the program and have used it many times in searching out items at other family members request. I have found that almost every family has unique issues related to certain health or illinesses and life expectancy. I have completed research on all my ancestoral families including my wife families as well as far back as possible. On my Dads side, some things I have found are; the male midlife type II diabetes came into the family by my 3rd grt grandmother paternal side (Irish), late life genetic parkinsons (80's) came into the family by my 2nd grt grandmother paternal side (french), and EDS classic or joint hypermobility came into the family thru the very father of the one who started this family history/genealogy my grt grandmother Dad's maternal side (prussian). It is interesting to note that EDS & POTS has been traced to cousins out to 4th and 5th cousins. EDS Clc or JH seems to be active in quite a few of descendants of this line but POTS is rare but does show up interestingly as both Low Blood Pressure or Low Flow POTs and Hyper POTS, equally mixed but in all cased EDS as the primary. I will give you an example: I have 1 dau. and two sons, all show signs of EDS, but only one has NCS/POTS and his EDS is quite severe, my younger brother has 1 son and 4 dau's and only one dau. has signs of EDS and also has NCS. My 3 other syblings have not passed on or it is not obvious that it has passed on as of yet. Also in all cases the later children in all families have had EDS in prior generations, with the exception of grt grandmother and her sister both who had severe problems with EDS. I must point out that it was not called EDS with grandma and grt grandmother but was called life long rhuematism. Grt grandmother sister did die very young at age 27 and the cause was listed as rhuematism/soilders heart, other wise and very interestingly most of the family members with EDS usually lived well into their 90's out living all other family members by 10 to 15 years, though with a lot of pain and suffering :-(. Dad has EDS and did have problems throuhout life with NCS, and he is 85, and his sister had EDS and passed on at age 90, also to note that both have or had parkinsons. My Great Grandmother both her and a younger sister had EDS, the brother who was older did not pass on into his descendants EDS. Their father (my 3 grt grandfather) and his brother descendants both have passed on EDS into their descendants, but all their other syblings did not. These two sons are from the first wife, and their mother died very young (early 30's) as did the other 3 children. EDS has not appeared in any of the children from the second wife, which may allow me to assume the first wife was the one with the defective EDS gene? I do know and talk to some of the cousins and half cousins out to 5th cousin on this line of descendants, thanks to grandmother and great grandmothers research work and good records! I hope this helps you in understanding what the genes do in our lives! DADofPotsSon

Micturition syncope, my Dad has had this problem most of his adult life! He claims that if he takes a few minutes, sitting and pumping the leg muscles before walking to the bathroom will prevent it from happening. He is 84 and still has the problem though not as severe as during his 30's and 40's He does not have POTS but shows symptoms of EDS. DADofPotsSon

hholmes13 “She had a seizure while getting her hair done about 4 weeks ago. (Never had one before.) Her eyes rolled back in her head and she started shaking and then completely blacked out.” You just described my Son#2 exactly who has EDS, POTS/NCS and his is caused by low blood pressure, and is Cardiac Arrhythmia induced. He is on Florinef, DDAVP, Midodrine, and sometimes beta blockers. He has RAS (reflex anoxic syncope/seizure). He was on seizure medications at age 20-22 which did not work too well, except Dilantin aka a class 1b antiarrythimic. Keppra made his condition worse! He has had many EEG’s and all indicate right center brain activity due to low blood flow POTS, and confirmed by several HUT. “I know seizures aren't generally a part of dysautonomia, but I'm just wondering if any one else has gone through similar things and has POTS or some other form of dysautonomia.” Seizures can be part of dysautonomia though secondary to other issues. He has sycope in surpine positions routinely, and night time syncope too which sometime comes as RAS. This was discovered in college by his roomie and reported to me. I was quite supprised and so was the nerourolgist along with his Cardiac EP. He slept in his own bedroom till he went off to college so we did not know this was happening. Though now we realize he did have some symptoms like bitting his lip or cheek at time in the night. I have kept a detailed record on all his issues and events from age 18 till present and now continue with the assistance of his wife. DADofPotsSon

My Dad used to have this problem, and a few times mom or us kids would find him on the bathroom floor out cold with syncope with his pants arround his ankles. He had done this at work too! Next time I visit him I will have to remind him! He is 84 now and I think he was in his 30's or slightly older when this happened.

I was in your shoe's 7 years ago. Son #2 chose the university that is 1 hour away vs 20 minutes. it worked out great in the long run. The first year he roomed with another and that turned out good because at home he had his own bedroom and we found out from the room mate that he was having convulsive syncope in his sleep at about the same time every night. All the last 3 years he had the rooms to himself. The university needed a doctors slip to provide air conditioning and Dr. Grubbs office provided that and it worked well. I did get to know the local EMT's quite well because the university rules was if you were passed out they did require a doctors slip to return to the campus, therefore a lot of trips to the ER, of which the staff at this hospital were super to work with. Campus security and I became good friends and they were very helpfull during times of syncope, and other times, they did keep an eye on him which was great. On a side note; onetime a girl had found him out(NCS) laying in the hall at night and stepped over him, he later dated her and she is now his wife. PM me if you have any other concerns. DADofPotsSon

Well, got the call from the DIL last night at 7:30 pm that her husband, my son#2 passed out with convulsions at the hockey arena. So I looked up his records and found he went 3 years and 4 months without syncope. We all assumed he had out grown his POTS or had learned to manage it well, but he just hit the ol POTS hole. So it appears he might need a POTS doctor in the Cincinnati area, does any one have a recomendation? A local Dr. would be nice, other wise he will have to travel back up to Toledo to see Dr.G NP! Thank you DADofPotsSon

Julia, I was in your shoes 6 years ago with my Son #2 when he was heading off to a University. I might suggest that you contact the security staff there as they can be very helpfull. Every time he had problems it was the security team who notified me of what happened and what they were doing. Also we used the instant messanger on the net to keep in contact and if he did not respond by a designate time we had the security to check in on him, and on those few occasions it was great to have them available. Also when he called me on his cell in a POTS crash I could immediately call the security and they responded very quick. Well in his senior year he as team leader took his University to the National contest in Civil Engineering competition and they place 13 in the Nation. Last year he got married on Jul 30th and it was 98F and he was the coolest dude there, oh wait, he had on a cool vest. LOL!

Be sure to take his Blood Pressure all during these events and also check his heart rate, you most likely will see very low BP readings! DADofPotsSon

BellaMia I had a triglyceride problem with readings near 400, at my Doctors direction I was put on Lipitor and fish oil, I just could not digest the 4 fish oil pills so after many months of a fishy odors and severe after taste, burps, and a triglyceride reading of just below 200 I switched myself to MegaRed Krill Oil. This is a one pill a day routine, and my latest triglyceride reading was well below 100. While fish oil provides other cardiovascular benefits, MegaRed? lowers CRP and triglycerides better than fish oil with out the bad digestive side effects. Supposedly its 3X better than fish oil? I cannot say that it may help your BP - postural condition but maybe it is worth a try? DADofPotsSon

I sent an email to my Ohio Congressman this weekend & the FDA. Also son#2 is trying to stock up on proamatine but not have good luck with his method. DADofPotsSon

Worried Mom Been there and done that as the saying goes with our son#2. He is now 22, was diagnosed at 17ish by dr Fouad of CC and is a paitent of Dr. Grubb. He has symptoms for several years prior to a full blown attack or onset? He went 1.5 yrs not able to drive, but he continued to play as a goalie for the high school hockey team, which by the way was the only place the NCS/Pots did not kick in? Must have been the ice! His freshman year at college he was in and out of the hospital so much, probably as much as he was in class. But eventually they got things under control and it really seems his body adjusted to the problems of NCS/POTS with the help of BB's and Proamatine and a excersise plan. This is a picture of his college team at the national concrete canoe contest in AL this June, they took 13th place in the national competition and he was the team Captain: http://content.asce.org/conferences/nccc20...-co.JPG.JPG.JPG He is the one at the rear of the concrete canoe and yes he has NCS/POTS, you would not think so looking at this photo. You need to keep a positive outlook and listen to what the others have said above, it is good advice. DADofPotsSon

I just spoke to my son #2 and he said a fair assessment would be a difference of 50% for him. Basically he was able to take 5 mg proamatine and get the same results as 10 mg of midodrine. I hope this helps. DADofPotsSon

When my son #2 was about 18ish and in a deep POTS hole, I can remember him sitting in a chair looking at his shoes on his feet and holding his shoe strings saying "I can't remember how to tie my shoes, can you help me" I was really shocked at his very sincere question! When he was 19 in college and a freshman he had to set an alarm for each class and use a calendar to remember which class to go to, yep all thru the day and every day of the week. It does pass, it just takes a little time, along with salt, water, proamatine, and metroprolol. This year he was a senior at college and he was captain of the Concrete Canoe team for the Civil Engineering students, and they took 13th at the national competition. DADofPotsSon

My Son #2 takes proamatine nearly the same as you, but when given midodrene he has to double his dosage. He was on a heavy dosage of Midodrene and Dr. Grubbs tried him on Proamatine and he was able to reduce the dosage in half with much better results. (10 to 5) When he can't get proamatine he does use midodrene but just increases the dosage. DADofPotsSon

Worried Mom I am with Mack's Mom on this one too, Kyler knows his limits, and will continue to learn his limits and train himself to better handle his problems. I have noticed over the years my son#2 (Brad) had to go thru the process of managing POTS with his activities. And yes he will have good times and some set backs but should always continues to improve slowly. If he has any good and true friends they will stick with him and also play a role in helping him thru the tough times. You were fortunate to have figured his problems out in a timely manner, it took us nealy a year and a half to get to a determination of POTS. This will allow Kyler to get an early start in conditioning him self in the training process. I must say its kind of funny watching Brad leave the house a couple years ago with his friends and they had his extra gatorade in their cargo pants pockets! He will finish college this fall in Civil Engineering! DADofPotsSon

I have had this cold air problem for a long time. As a Child I had spring allergies, and a few times per year in the spring the allergies would cause an asthma attack. This lasted until my late teens and for some reason the asthma just quit happening. The spring allergy continues to the current time in my life and it has improved and now nearly under complete control with singular. About 15 yrs ago I was walking on a very hot summer day with high NW Ohio humidity and walked into a super air conditioned office and i had a total stoppage of air going into my lungs with severe pain and spasms in my chest. My first reaction was to go outside and i then got some immediate relief. For a second my first thought was a heart attack. Not only do I now have trouble with summer time air conditioning but about 5 years ago I developed the same problem in the winter outside. The colder and the dryer the air is the more trouble I have. The home air conditioner and car/truck AC does the same. I am in good shape physically, I have horses and do get good excersise taking care of them plus I do a lot of bike riding too. Asthma has returned in my life but just in the spring time with the allergies before I went on singular. These cold air spasms are a real problem and can be very pain full in the bronchi too. Things I have found that help, I have a real nice neoprene/fleece type mask that has tons of coverage and velcro's in the back, Advill(2) one or two hours before going outside when doing physical work, also the abuterol inhaler used about a half hour before going outside helps too. The inhaler does not work after I have hit the cold air, it is useless then. The only thing that helps then is hot humid air or steamy air. Not sure why the advill works? I find myself going outside to the barn holding my breath nearly as much as i can til i get to the barn or my truck. (next one will have a remote starter). I may have to look at getting a winter cab for my tractor too. There is a big difference between the asthma and the cold air problems. Asthma seems to be air that can't get out and is more in the lower part of the lungs and the cold air seems to be air that will not go in and seems to be more in the upper part of the lungs. I have been to the pulmonologist and will return in late february, but he calls them cold air spasms, and may or may not be directly related to the asthma. I have a neice who has this exact same problem with the spring allergy and the winter cold air, she is 23, but none of my children have the problem. The No. 2 son who has NCS/POTS and he really likes the cold air, he said he has less POTS symptoms, he just can't take the heat in the summer or a hot steaming shower(causes him to pass out). In the summer time he likes to open up the freezer and breath in the cold air and it does help him, you won't catch me doing that DADofPotsSon

Shire US Inc 7900 Tanners Gate Lane, Suite 200 Florence, KY 41042 Listed as Drug Supplier/Manufacture for proamatine as listed in our records. I know our insurance plan moans and groans when we put in for the order for a 90 day supply of proamatine. It always takes a lot of paper work from Dr. Grubb's office to get the order supllied. My son2 did not respond very well to midodrene but proamatene works great. DADofPotsSon

Hello Seth Hang in there as it will get better! My son#2 who was the local high school team goalie and also ran on the cross county team came down with POTS in his senior year. He started out strong in the first quarter but barely got thru the remainder of the first year at college due to his POTS. He took the summer off and rested and recouperated and then return to college, and it has been a very long path to recovery for him. He is in his senior year at college now and playing a little catch up with his class schedule in order to graduate this next spring. Ok! he is not fully recovered but he is nearly back to normal so as long as he takes his meds, drinks his fluids and gets the occasional nap worked into his schedule. DADofPotsSon

I had those circles or rings around my eyes throughout my teens. They went away in my early 20's, though I have a nephew a second cousin and a third cousin who have had them all their lives? Mom always kept asking me if I washed my face or telling me I need to wash my face I actually had rough scaly elbows at the same time too, and a few times she used comet cleanser on those scaly elbows The problem came back in a day or two. If I remember right grandma said it was caused by a lack of somthing I can't remember. Spinach? I really can't remember just guessing. I have had the elbow thingy return several times for months at a time in my life, but it always goes away. None of my 3 children have these problems DADofPotsSon