DADofPotsSon

Meg The University that you are attending is a small college and they already have been tested by a POTS student, this was my son #2 in his freshman year. I agree we had some difficulties but we got the Dean straightened out and I must say by the end of the first year things went very well. He was called in to the dean's office many times due to so many emergency transports to the Hospital, and they did try to use the "well its our concern of your safety" saying. Also one time the EMT's ask him if he was taking drugs and his answer was well yes, but he thought in his incoherent state that they were talking about Toprol and Midodrene, but the University President was going to kick him out of school for illegal drug use! DOH! Again with a letter from several of his Dr's the whole issue was resolved. He is a senior there now, but his freshman year was one he does not remember much of due to his NCS/POTS and convulsive syncope. So you could use him as an example if you have troubles. PM me and I will give you his name if you need it. Good Luck DADofPotsSon

Yes Ohio is a state with lyme disease, but with a low Lyme disease risk, with the 4 or 5 northeast counties with a medium risk. Each year Ohio has about 55 cases of Lyme Disease reported with 1997 being at 40 cases and 2002 being 82 cases. Canada also has area's of lyme disease risk. DADofPotsSon

I can remember my Son #2 having those events many times when he was 18 to 19 and his POTS was at its most severe time, my wife called them stupors. Once they got the BB's, the Midodrene, and also his salt level increased with fluids, they seemed to vanish. The neruo.. said it was caused by low BP and insufficient oxygen to the brain. DADofPotsSon

momofPOTSkid Now you got me thinking! Lets see, My Dad has Orthostatic Hypotension, and has had a dozen or so Syncope events in his life, and he is now 80 yrs old, he is child 4 of 5 and no other sibling had any other problems like this, though he had a sister who had severe MVP and she made it to age 90. I am child 1 of 5, age 55 yrs and have on occasions have tachy arrhythmia and two occasions of syncope when young and a younger brother 4 of 5 age 48, who has the same problems with tachy arrhtyhmia, no other siblings have these problems. Now my children, daughter 1 has MVP and Tachy arrhtyhmia, son 1 who is like my father has orthostatic hypotension, and the son2 who has NCS/POTS. (I believe also attends the same university as Meg, so they have two students with POTS.) Dads motto in life has always been "take your time getting up but walk fast to make up the time" I still can't keep up with him. My dad has 14 grandchildren, and only my 3 children seem to have problems like Othostatic Hypotension, MVP, NCS/POTS, the most interesting thing I have found that dad's paternal grandmother has listed on her death certificate "life long MVP" and "arrhtyhmia's" I think genes play an important roll in our life, good and bad. DADofPotsSon

Son#2 was first put on Midodrine and was on it for approximately one year, and he had to take it at the maximum dosage to get the needed results and it was marginal at best. Dr. Grubbs switched him to Proamatine and it was apparent right away that the change was working much better, in fact it was so much better, he was able to have the dosage reduced by half using Proamatine. We did have trouble with the insurance company because the additional cost, and it took a letter from the Dr's to get the insurance company to cover the Proamatine. DADofPotsSon

I was impressed with Cleveland Clinic, when my Son #2 ended up in ICU for 4 days, the Neuro recommended that we take him to Dr. Grubb at MUO or Dr. Fouad Tarazi at CC. Dr. Fouad Tarazi at CC was able to get us into her schedule in less than two weeks, and Dr. Grubb at MUO at the earliest was 11 months. So we went with Dr. Fouad Tarazi at CC for the first year and eventually made the switch to Dr. Grubb, the reason was 2 hr drive for CC vs. 20 min. drive for MUO. CC did do quite a number of test which helped determine actually what the problems were and really came up with the the plan to get him on the road to recovery. Dr. Grubb has furthered tweaked this plan and treatment which furthered his improvement. DADofPotsSon

Meg Yes, he is a senior at Ohio Northern studying Civil Engineering, and I breifly discussed the proposed Lima meetings with him on thursday. During his first year the security personnel knew him quite well and so did the Liberty/ADA EMT's with 14 trips to the ER. Meg wrote: "The disability office seems to think I'm an anomaly!" This is not the case, in fact he had several meetings with them as they were concerned about his safety, etc...! I will send you a PM. DADofPotsSon

Ada with POTS? Hmmm, that is where my son #2 goes to school and he also has POTS. I will let him know about these proposed meetings in Lima, he may want to attend. DADofPotsSon

My Son #2 who is 21 was started on midodrine at 5 mg 3x's per day almost 3 yrs ago when his POTS was at its peak, or maybe better said in a POTS hole, this was by his PCP and a cardiologist. The problem with that was it only helped him for 12 hrs, and he was still having syncope and convulsive syncope problems very late in the day. The PCP changed the dosage to 10, 5, 5, 2.5 with some improvement, but he was still having low BP issues. At his first appt with Dr Grubb, he switched him to proamatine instead of the generic midodrine. and this works much much better. He is also approved to take up to 40 mgs/day total for those long college days, midterms, and final exams. His resting HR is usually 50-55 and the BP is always low but with proamatine it is much more stable. Now on most days he takes 5 mg just before getting out of bed, then an additional one in 4 hrs, by then his fluid intake and salt loading has begun to take affect and he does not take the proamatine later in the day. He also has on a few weekends tried to make it an entire day with out taking proamatine and has had some success, he does this by drinking gatorade or G-2 before getting out of bed, then keeping his fluids up w/salt of course, and it seems to be working, though his BP is not as stable. If he is doing any physical activity such as roller blading, playing hockey or riding a bike he does need to take his proamatine and he ususally takes 5 mg. By monitoring his BP and how He feels He has become in tune with his body and knows when he needs the proamatine, so I guess you could say he takes it as needed. DADofPotsSon

Son#2 has similar dosage as you and has near the same results. Dr Grubb has switched him to proamatine instead of the generic midodrine and this works much better. He is also approved to take up to 40 mgs/day for those long college days, midterms, and final exams. His resting HR is usually 50-55 and the BP is always low but with proamatine it is much more stable. DADofPotsSon

My Daughter had this happen to her, she was a cross country runner in high school and continued running for years even after college (vet school). One day she had what she thought was a heart attack while running, after being taken to the ER and after several hours it was diagnosed as costochondritis. Apparently she had damaged her stenum and or cartlidge too, if I remember correctly she said they told her it was over use, and she was in very intense pain. It took 12 to 18 months to recover and is now beginning to run lightly again. She still complains now and then about it. This is also the first time she was told that she had severe MVP! DADofPotsSon

My son #2 was put on a low dose of Keppra for what was thought to be seizures, these events became more frequent, so more keppra was added, then the frequency increased again, so they added more keppra, the events became even more frequent, so they added more keppra, do you get the point. It was not until he was connected up to the EEG and EKG during an event that they verified that he was not having a seizure and was actually having convulsive syncope. It was later presented to us by a neuro at a different hospital that keppra can cause an increase problems in people with NMH, NCS and or POTS. This was also told to us by Dr. Grubb. He has actually went into status elipticus after a severe hypovolumic shock cause by dehydration from being sick, so he was put on Dylantin for a while, this along with the toprol xl helped his POTS and prevented another status elipticus seizure. He did complain alot about different or weird things happening when he was on Keppra. As I have said, more than one doctor told us keppra does not mix well with POTS. Convulsive Syncope is the condition most commonly confused with epilepsy. Convulsive Syncope is also much more common than epilepsy. "A typical attack takes following pattern: prodromal symptoms of nausea, clammy sweating, blurring, greying and possible loss of vision, lightheadedness, dizziness and tinnitus. Many of these individual symptoms are difficult to describe and their description may be vague, but the collection is characteristic. Subsequently, the patient will look pale and be sweaty. Mydriasis, tachypnoea and bradycardia may be noted. Muscle tone is reduced, causing the eyes to roll up, and the patient falls to the ground. In the horizontal position, skin colour, pulse and consciousness then usually return quickly, within seconds. While the patient may briefly feel unwell, confusion, amnesia and drowsiness are not prolonged. Injury and incontinence are rare but may occur. Tongue biting is very rare in syncope." "Diagnostic confusion may arise when a few myoclonic jerks occur during the anoxic phase. Such myoclonic jerks are usually multifocal, rarely rhythmic or prolonged or of large amplitude, and should not be misconstrued as a true epileptic seizure. Videotelemetric recording shows that epileptiform EEG changes do not occur during such episodes, and the myoclonic activity has no consistent relationship with any EEG changes. If recovery from cerebral hypoperfusion is delayed (for example, if the patient is held in an upright position), a secondary anoxic convulsion may occur. These episodes also should not be considered to be epileptic seizures." The point of the quotes is that it is very easy to view and be confused by the convulsive syncope vs. a seizure DADofPotsSon

My No. 2 son has NCS/POTS, he is 21 yrs old, his first problems began at age 17 1/2 and he is currently attending college as a junior. He has been on Midodrine/Proamatine for about 3 yrs, though he was initially started out on Midodrine, Dr. Grubb switched him to the non generic Proamatine. This was because the Midodrine was not providing the results Dr. Grubb was looking for, it did make a big difference. During the time when his POTS was at its worst he was taking up to 40 mg. to 45 mg. a day with midodrine. Once the POTS was stablized some what and he was switched to the Proamatine he was able to lower his daily dose to 30 mg. with the same or better results. As I recall Dr. Grubb saying some people respond differently with different brands of midodrine and some can even respond better with proamatine. Proamatine is much more expensive! As his condition is today he takes about 10 mg. to 20 mg. on an average day at college. And some days, mostly the weekends he takes less than that, especially if he is at the computer doing home work/studing (maybe playing games too) he only takes 5 mg. to 10 mg. a day. He now only needs it first thing in the morning, usually 10 mg. first then 2.5 mg 3 to 4 hrs later and 2.5 mg 3 to 4 hr after that if needed. He also keeps it at hand so if he has an immediate need he can take one or two 5 mg. as needed. He also takes 10 mg. just before he drives back to college (about a 1 hr drive), he claims it helps keep him more alert. He has tried not taking any proamatine and has had some success with this only on a weekend. Fluid and Salt loading is a must with him. He is also on Troprol XL I hope this helps you and your son, and good luck. DADofPotsSon

Welcome Newbie ehl5 You will find this site to be very helpful and the people here most friendly. My Son #2 who will be 21 yrs old in a few weeks and has NCS and POTS. It all began about 3 years ago having seizures in the summer time after a work out. He was treated for seizures for 9 months with multiple seizure drugs and he did NOT respond positive to any of the drugs, in fact Keppra made the condition much more severe with more events. Just by pure luck he was in the ER hooked up on a EKG after being brought in for a seizure, after complaining of chest pains. His BP was 90/52 then his blood pressure dropped to 55/37 and the EKG recorded with a HR of 175+ and 3 minutes later he went into another seizure. After all this he was taken off the seizure meds., he than began a long process testing and many differnt Doctors which led to a diagnosis of NCS and POTS. He is now on Midrodrine, Toporol XL and a low dose of Dilantin(phenytoin). Dilantin is being used as a preventative to keep the multiple convulsive syncope events from going into grand mal seizures. On one occasion prior to being prescribed Toprol XL and Dilantin he had multiple (6) convulsive syncope events in several hours that converted into grand mal seizure then status elpiticus. Though once he began taking Toporol XL a beta blocker, it stopped the convulsive syncope events. Dr. Grubb is taking him off the Dilantin in February 2008. Sorry about the long story to get to the point, but hopefully it helps! DADofPotsSon

Ok! as I promised in a previous post: Dark Chocolate Covered Pretzels can be purchased on the internet from Dietsch Brothers Inc., at Dietsch or http://www.dietschs.com/CustomerTestimonials.html DADofPotsSon

There is a place in Findlay, Ohio that makes dark chocolate covered pretzels. I am not sure of there name but I will contact my son and see if they can be purchaged and shipped?

Manganese? Well my first question would be are you on private or municipal well water supply or a municipal surface water supply (rivers or lakes)? I have seen very high manganese levels in well water, some so high that it makes the inside of the pipes gray to black. Maganese is naturally occuring in the ground and is in very high concetrations in the bottom or floor of the ocean too. If I recall, in moderation it helps with vitamin b absorption. Manganese causes the hardness in water and ion exchange water softners can easily remove manganese. The EPA has set a non-enforceable guideline for the level of manganese in drinking water at 0.05 milligrams per liter (0.05 mg/L). DADofPotsSon

Just recently my son#2 who has ncs/pots had some college friends over and when they left to go out to eat I heard this conversation as they were going out the door "Hey whats with all the bottles in your cargo pants?" Immediately one of his friends responds with "thats nothing, wait till you see him shake the salt on his hamburger, it will look like frosting on a doughnut". The wife and I had a good laugh when we heard those comments!

He is located at University of Toledo Medical Center and this is a link to the University's web page: Dr. Blair Grubb or http://utmc.utoledo.edu/physicianapp/physingle.jsp?ID=75 Bill

Lukkychrm42 "have your son's episodes improved since starting treatment for the arrythmia?" Yes! Initially he always had convulsive activity but it started after he was on the floor, bed or sofa. Never had any warning signs, it was usually a couple of times showering, but most of the time it was when he would rise after sitting in a chair or on the dorm room floor or even just a sudden change from standing to moving walking. One occasion he was admitted to the ER then transfered to the ICU as in a coma after a multiple convulsive events, this was initially stated as status epilepticus but later changed to Hypovolemic shock due to inadaquate blood volume as he was extremely dehydrated. His HR was running 175 to 225. They put him on Dylantin along with the BB's for a short time right after that event for added protection, this was done by both the Neuro and EP. He took drinking fluids very serious after that event. He is a normal college student now studying Civil Engineering, he just got back Monday from Seattle, WA and was competing in the National Concrete Canoe competition. Still on BB's and ProAmatine, high sodium and lots of fluids, still has very low BP and occasional POTS symptoms such as adrenaline rushes, etc. I do remember Dr. Grubbs telling us that it is possible for convulsive syncope to convert into status epilepticus. DADofPotsSon

My Son#2 was initially diagnosed with grand mal seizures as based on inexperienced witnesses. He was treated with Keppra and this treatment increaased the frequency of the seizures. Several times EMT's would comment that his BP was extremely low and his HR was very high when they first arrived, but this was always discounted. He also did not have incontinence or tongue biting. It was not until I was with him and witnessed it that I began to question it. Eventually I contacted a cadio who began investigating my diary and previous EMT and ER reports which was over two inches thick. Eventually this condition was duplicated on a TTT at St. Vincent Toledo, then at Cleveland Clinic with Dr. Fauad and verified at Medical University of Ohio by Dr. Grubbs. Seizure meds were discontinued and he was put on a BB with ProAmatine. Cardiac Arrhythmias was determined to be the underlying cause of the seizures. The official diagnoses was NCS with POTS. I must also point out that all the EEG, MRI and CAT scans were negative. Though during an event he did show right side brain activity. Dr. Grubbs indicated this would be normal for this condition during and immediately after an event. Convulsive Syncope can and does look much like a grand mal seizure. Here is an article on syncope vs siezures: http://heartdisease.about.com/cs/generalli...copeseizure.htm http://www.medtronic.com/servlet/ContentSe...Stage=Diagnosis DADofPotsSon

My Father has hypotension and has had it for life, he will be 79 in three weeks. He keeps good records and I ask him recently what his 2006 average BP reading was and he said 105/59, which is low for a person at 79. Other than the occasional dizziness it rarely causes him any trouble. My mother said she can only remember him passing out about a dozen times, and those were always getting out of bed or getting off the sofa all too fast. He even today gets out of a chair very slowly by sliding out to the edge and pumps his leg muscles a little then gets up, stands the for a second or two then walks fast. He always says "I get up slow but I can make up the time by walking fast". He is a very fast at walking, I am 53 and in very good shape and cannot keep up with him, he is like the battery commercial on TV, he keeps going and going and going. He keeps in good shape and is very active. Both my sons have the same problem as Dad, hypotension, unfortunately son#2 age 20 has POTS, now that adds complications to hypotension. Dr. Grubb said "whew Son#2 is low one" his base line BP is 90/55. That is after salt, water toprol xl, and midodrine. We all hope Son#2 grows out of the POTS in a few years and can deal just with hypotension. Dad?s siblings did not have hypotension but his older sister had MVP with tachycardia, she just passed away at 90. My daughter who is 28 has this same problem. Hypotension is just a inconvenience but with NCS or POTS it?s a problem. DASofPotsSon

Lauren Son #2 has had the same type of seizure activity that you have explained. Sometime his would convert into one called tonic clonic seizure, often called grand mal type, though no tongue bitting or incontinence. Sometime they would start right up as Grand Mal type appearing seizure. What we found out is that if he did not take his midodrine during the day, he would then have them during the day, but when on midodrine he only had them at late night. They first used Keppra a seizure medication which made the problem worse causing them to be very frequent. After not being happy with his first neuroligist, we found neurologist Dr. Lamancusa, who understood NCS very well, and he consulted with Cleveland Clinic, and had us take son#2 there for testing. Testing confirmed that it was being caused by NCS and they also diagnosed him with POTS which was an additonal cause, and his seizure events definetly were not epiletic in nature. The Neuro also consulted with several EP's and it was decided to put him on a combination of Dilantin, and Toprol XL. I believe they did this to control the tachycardia, which always seemed to start the convulsive syncope or seizure like events. At an appointment *** Dr. Grubb, he explained to us that the seizure type events are actually being caused by the venous pooling and tachycardia which does not allow sufficient blood flow to the brain. EEG's EKG's CT's and MRI's were also used to confirm that this activity was not Epilepsy. Both Dr. Grubb of MU of Ohio and Dr. Fauad of Cleveland Clinic seem to all say about the same thing "Keep the NCS/POTS under control and the seizure like activity will stop". His current medications are Dilantin, Toprol XL, ProAmatine, along with lots of salt, fluids and rest. He is back in college fulltime. Maybe it would be worth looking for a good neurologist who understands NCS & POTS. DADofPotsSon

On January 14, 2006 I witnessed my #2son faint while laying flat on the sofa! Its amazing what NCS/POTS will do to a person! I have been keeping a very acurate diary since his first event and its has been really interesting reviewing it at times. DADofPotsSon

I added my #2 son to this posting a few weeks ago so you would have your first male, he has NCS, & POTS. He is 5'-11 1/2" tall and weighs 160#'s and is very athletic. He is in his second year at college studying civil engineering, but this last year the POTS has really kicked him in the butt by slowing him down. As Dr. Grubbs has said "take your time and pace yourself, if you need 5 or 6 years to get your BS degree then by all means take the time... don't burn the candle on both ends." I think that was excellent advice! Prior to the POTS he did burn the candle on both ends and sometimes even tried to light it in the middle. DADofPotsSon