DADofPotsSon

My son#2 took midodrine for years and still occasionally takes it, though he currently relies on Florinef. Anyway no matter what his dosage was it always was 3 to 3.25 hours for the effect! He seemed to have better results with the original drug Proamatine usually 3.5 to 4.0 hours, of which his Dr. prescribed but the insurance company had a fit due to the increased cost!

My son had that problem during his late teens and early twenty's and florinef is what helped! He is 29 now and still takes florinef. During his late teens the doctors tried the proamatine drug on him supine to see if it helped but unfortunately we had to wake him every 4 hours to take it. It did work, but the florinef did the trick! DADofPotsSon

My Son#2 has this problem! It has been determined that he has Hypopnia! " During sleep, hypopnea is classed as a sleep disorder. With moderate to severe hypopnea, sleep is disturbed such that patients may get a full night's sleep but still not feel rested because they did not get the right kind of sleep. The disruption in breathing causes a drop in blood oxygen level, which may in turn disrupt the stages of sleep." He most always had his syncope during the day time, and a few times he had convulsive syncope and or seizures during the syncope events, but we were shocked one night when about 2:30 am he had a seizure in his sleep, test were done and it was determined he had Hypopnia causing syncope in his sleep. DADoPotsSon

My son#2 does, his were determined to be caused by very low blood pressure, fast HR, causing anoxic condition in the brain by a university hospital. He has had then since age 18 and are now controlled by keeping fluids up, florinef and a drug combo of toprol xl, and dilantin. He is now 29. His Dr.'s call them Reflex Anoxic Seizures or Convulsive Syncope. Normally 2 bags of IV's will fix the problem when he has them. Bottom line cause appears to be dehydration.

My Son#2 had and has brain fog problems with his POTS, it took him 5 years to do a university for civil engineering including taking classes in the summer, he was not able to work. Eventually he did graduate as a BS in civil engineer (environmental). He said it was all possible due to a lighter class load and midodrine!

Yes, my Son#2 does take Midodrine as needed and has for 10 years!

My son#2 who has H-EDS, NCS, POTS and convulsive syncope since age 17 went to college and became a civil engineer, it took him an extra year to complete the degree but was worth it. He and his wife both passed the Professional Engineers exam this spring. The funniest part is when his wife first met him she had to step over him in the hall while he was still laying on the floor after a syncope event! During college he took the university concrete canoe team to the nationals as the team captain and they placed in the nationals and it was the first time in the University history that they were able to make the nationals. All while having his dysautonomia issues. We worked closely with Dr. Grubb and his office and with a very good exercise program he was some what able to function. Today he works designing environmental projects at his desk but can and does go into the field at times with a stay cool vest, but at the end of each day he still stops by a gym to keep in shape to help overcome the dysautonomia issues along with the H-EDS problems, he also has a previous surgery on his right shoulder after a break and to keep if from dislocating. The right drug combo makes it all work for him.

I had to deal with this issue about 10 years ago! My son#2 (H-EDS, NCS/POTS) went off to college with a desire to become a Civil Engineer. Fortunately he picked a college which was about an hour away, and he stayed there and took a lighter load and also went thru the summer months to classes to keep up the pace, eventually graduating in 4.5 years. I met with the Campus Security about his problem of NCS/POTS, and convulsive syncope and established a good relationship with them right away which in the long run proved to work out very well. He also set up on both his computer and my computers at home and work an old software called AIM which allowed him to post when he was in class or taking naps etc. A no response in a certain amount of time meant a call to campus security to check on him. On a couple of occasions he was found to be in a full POTS episode and a couple other times just forgot to post due to brain fog. His college roommate was also helpful and had my cell phone number to call when needed, in his later years he roomed alone but always on campus. As I think about it, constant communication appears to be the best thing one can use. DADofPotsSon

To the layman a seizure is hard to distinguish from convulsive syncope, but generally one with POTS it should be first to determine if it is convulsive syncope. My son#2 has dealt with this issue for 15 years. He has H-EDS, NCS/POTS and convulsive syncope. It has been determined by two university hospitals that in fact his were CS. The official cause was listed as Anoxic in nature due to Hypovolemia, so they added florinef, salt, liquids, toprol xl, and dilantin as a class b Antiarrhythmic. DADofPotsSon

Bigskyfam, A water softener exchanges sodium for hardness ions, therefore your water would have more sodium such as the rental place had. You will have less sodium on the city water system if it is not a softened well water system . If you counted on this softened water for your sodium you will need to find another source in your consumption. BTW I am an engineer and a licensed water treatment plant operator and have spent 41 years in the design of water treatment plants, and will retire on Sept. 30th, 2014. If you have any additional questions or concerns, please feel free to contact me! DADofPotsSon

MakeMeErised,What you have described is exactly what my son#2 has had to deal with for over 12 years. At this date time it appears that a cocktail of drugs has helped. When he is admitted to a hospital the addition of O2 seems to help in a quick recovery. His cocktail of drugs is toprol XL, Dilantin, Florinef, Midodrine and a high salt diet with lots of fluids. The Dilantin is being used as a class 1b antiarrhythmic, but it also helps to keep the syncope from the low O2/low BP from converting into a Anoxic Seizure. He has also had syncope & nocturnal seizures due to low O2 and Low BP in REM 3 or 4 sleep. His starts usually with a stair climb or just getting up from a chair and walking fast. DADofPotsSon

I am 60 years old and have had this off and on since in my 20's. I have tried the L-dopa with no luck, but do have some improvement with Ibuprofen. I have found that over doing it and over exertion seems to aggravate it. Mine is most always at night and mostly the right leg, and it can ruin a good night sleep. I am very cautious with chiropractors as they also can cause it to flare up too. I have always been of the opinion that it is more electro spinal related and not brain related. If I treat my back/spine/chord with care it seems to disappear for a while. I have had it as bad as the girl in the video! DADofPotsSon

His trigger is mainly dehydration, with slightly high body temps. Though stress and the lack of good quality sleep do become a factor too!

MakeMeErised, I talked to my Son#2 and he said to keep you body temp down, he thinks that plays a roll in the events especially the second one. He does keep his home during the winter at 65/66 and not more than 75 in the summer. His wife has learned to tolerate the lower temps by dressing warmer and in layers, normally he is only in short sleeves or tee's He agrees that your events are nearly the same as his. Fortunately his company keeps a cool office in the summer. DADofPotsSon

MakeMeErised, Dilantin is an anti-epileptic drug in high dosages of greater than 100 mg per day and up to 400 mg per day. but it is also used as an antiarrthymic drug and the dosage can be 25 mg plus or minus. As I have stated it is a class 1b antiarrthymic drug as well as also used for control for epileptic grand mal seizures. The dosage is quite different for only seizure activity. SarahA33, My Son#2 events usually came in twos, one initial and one about an hour later and usually at the hospital. He has had them while on EEG, and EKG with blood pressure monitors. Normally his blood pressure is quite low, and the first sign is his heart rate will go to 175-225, then his eyes will roll up and to the right, His right arm will extend up and to the right straight up then in to tonic clonic type of movements with no incontinence or tongue biting. Normally after the event he does vomit, but not always. Keppra alway increased his event. EEG test always show right center brain activity, not front lobes, and only during the low blood flow to the brain. They usually last about a minute, though I have seen some that were on 20 seconds and others that lasted more than 2 minutes. One thing that helps is to prevent a second one is to lower his body temp with wet rags and cold items, on the forehead, neck, and legs. DADofPotsSon

10 years ago in the beginning of the very first seizures they had My Son#2 take Keppra and they even got the dosage up to 3000 mg but it clearly caused his frequency of the seizures to increase. They gradually weaned him off the Keppra, and then started him on toprol xl, the events dropped to one every few months, but to eliminate the seizure event completely they added dilantin as a class 1b Antiarrhythmic. He also take midodrene, and florinef. He was under control of a university hospital and they said his was clearly RAS type of seizure or more specifically Anoxic Seizures caused by POTS. DADofPotsSon

MakeMeErised, My Son#2 has had these episodes since age 16 and he is now 26, and he was tested at UMC Toledo and it was determined that his does start out as convulsive syncope or called RAS (reflex anoxic seizure) Reflex anoxic seizures are not epileptic seizures or epilepsy. This is usually a consequence of a reduction in cerebral perfusion by oxygenated blood. It can be a result of either a sudden reduction in the blood flow to the brain, a drop in the oxygen content of the blood supplying the brain, or a combination of the two. Syncope can have different meanings ranging from transientloss of concisonous, usually accompanied by a decrease or loss in postural tone to tonic and myoclonic events and nonepileptic spasms. The key is to watch the eye movement during the start of the event as they usually roll up and also the lack of incontinence at the end. He usually vomits after the event. Blood pressure is very low and heart rate is very high. A cocktail of drugs have corrected the problem, small dose of toprol xl, small dose of dilantin, and midodrene. He has had these while laying on a couch to standing and or walkiing, but mostly after getting up from a chair.

The seizure you described sounds just like my son#2 convulsive syncope events and if he has them repeatedly then they cross over into a full grand mal seizure. The eyes rolling back in the head is exactly as he responds. DADofPotsSon

My son#2 experiences convulsion syncope due to POTS, which is basically due to an overload from being over stimulated and he takes a combo of toprol xl and dilantin, both a low dose. This drug combo was worked up by a neurologist and a EP with help of a university hospital, He has had many EEG's and all test indicate not epileptic in cause, just cause by POTS over stimulation.

My Grandmother described to me what sounded like POTS that she experienced immediately after my father was born, her age was about 39. She described syncope events in detail, said she had severe anemia, and may other issues similarly described as in POTS, She also mentioned that her mother came to live with Her and helped her raise the children. I can remember asking her what resolved the problems and she said she knew immediately when she became pregnant again at age 44 because all her illness problems disappeared. This pregnancy led to my Uncle. Grandma had what appears to have been HEDS. She described many other problems and that her mother had the same EDS issues, mostly dislocations, soft younger looking skin and frozen shoulder joints. My Dad clearly has HEDS/OI/Syncope with a crossover of Classic symptoms, and my Son#2 has a university hospital diagnoses of HEDS/NCS/POTS due to inheritance through me from Dad..... I hope this helps! DADofPotsSon

I am a type II diabetic and I eat a low carb, high protein diet, and manage my diabetes quite well with this method. My wife is exactly like you, so she needs to graze all day and or eats many small meals and it works well for her to keep up her glucose readings. We also do well on slow release carbs which I can tolerate and it works very well with her. Do some research on slow release carbs and that just may be your ticket to success in keeping you blood glucose steady. Many doctors have told me any blood glucose level below 65 is way too low. I can tell instantly if she is low as she gets grumpy :-( DADofPotsSon

My Son#2 age 26 deals with convulsive syncope since age 16 and in fact it was miss diagnosed as a seizures in the early stages by ER staff. It took several years of exhausting research and especially through Dr. Grubbs & Dr. Lamancusa to verify that these were in fact convulsive syncope. Unfortunately with Son#2 these convulsive syncope events when in multiple events with out very prompt IV's will convert to a full resemblance of a grandmal type seizure. He does take a low dose of dilantin (phenytoin) to prevent the convulsive syncope from converting to a seizure. As in his case these are really called or refered to as Reflex anoxic seizures or RAS and are a form of syncope encountered mainly, but not exclusively, in young children. Reflex Anoxic Seizures are NOT epileptic. It has been determined that he has (H) EDS,which causes NCS/POTS w/CS w/RAS He is on Toprol XL, Midodrene, Florinef, Dilantin, salt loading, His worst enemy is low blood pressure/low blood volume. From age 16 thru age 19 the assumption was he had some type of epileptic seizures though all test indicated he did not have an epileptic seizure. The EEG test always indicated that he had right center brain activity during very low blood pressure. DADofPotsSon

Being a family historian and novice genealogist, I can find a lot of issues in previous ancestors that are quite random. Though in my family my grt grandmother had severe EDS but was call rheumatism on her death certificate, but my Dad and a Late Aunt provided very good descriptive accounts on what they saw allowing a verification of EDS. I was very close to my grandmother and by what i have researched and her descriptions she clearly had EDS, and in her 30's thru 40's clearly had POTS. Dad is 86 and is in the last few months of life, did have minor problems with Hypotension and some occasion syncope. I am sort of normal if that is possible, but only deal with Raynauds, My son#2 has EDS, NCS/POTS and some seizures due to low blood pressure. Now i have also researched out to 4th cousins and have by elimination clearly determined what ancestor where the EDS came from. He did come from Heddeshiem in Prussia. There are more than 200 descendants of him and on very rare occasions EDS does appear or minor symptoms of EDS. DADofPotsSon

My son#2 and myself, we use Lindt & Sprungli Excellence 90% COCOA,, actually I prefer the 99% but it is hard to find, this one is nice and bitter :-) he and I do not have any issues with the 90% but we both try to not eat more than two squares of it per day. It would have a much lower sugar content than Hershey kisses.

My Son#2 started this in High School though it got worse in college, it went away for a few years and then returned at age 25. He actually began by waking drenched and in a near panic attack, but sometimes it even went into a full convulsion and even at times into a seizure and it was corrected by a low dose of toprol xl and a low dose of dylantin. He has EDS (H) NCS/POTS. It has been noticed that sometimes his feet were purple during this event. it normally took 2 IV's to get him to come out of it. The room temp. if high seems to be a factor. a sleep study was done and it was shown he had no sleep issues other than a infrequent Hypopnia event