Jump to content

This Forum Is Very Helpful - Thank You

Recommended Posts

About a year ago #2 son began have seizures, Dr's treated as Epileptic Seizures with no results, the more meds the more frequent they got, then in January while in ER he had a convulsive seizure but just before his HR went to 175. Not happy with seizure DX I went searching for information and found this site. With the help of the information on this site and then demanding the PCP send us to Cleveland Clinic, we got his DX: NCS and POTS. They put him on midrodine, and toprol. He is back playing hockey, getting ready to back to college next week and running around like any other 19 yr old.

Thanks for all your helpful posting


Link to comment
Share on other sites

Guest dionna

i am very happy for your son! i wish him the best of luck with hockey. my man loves hockey and played all the time. he wants to play for the wild but he has ncs and they havent yet controlled his. well okay he also wants to go back to body building, do iron man, strong man, UFC (yeah over my dead body), WWE, etc. he has done a lot though already. movies, commercials, modeling, body building, marine sniper--- iraq wounded veteran... so make sure you let your son know that his dreams can only be limited to what he lets them be limited to. me and my man both went through marine basic training with it--- him also through school of infantry SOI and sniper school and Iraq where he got hit. so yes i do wish your son a lot of luck.

dionna :D

Link to comment
Share on other sites

Thanks for all your comments, yes it is good to see him moving about again, especially since all the events of the last year. Someone had a question on hockey, and yes he was a high school goalie, but has not played hockey for over a year. Just recently released to play again.

The biggest problem was he being misdiagnosed as epileptic seizures for several months, though all the MRI, CAT Scans, ECG's EEG's showed non-diagnostic or normal. I kept questioning the Tachy arrhythmias, nausea, lightheadedness, palpitations and the Neuro kept insisting that it was the seizure that was causing it. His BP was usually 80/47 or lower, and they insited that was ok as he was athletic! Once when admitted to the ER he had a BP of 72/37.

Eventually they had so much antiepileptic drugs in him he could not remember how to tie his shoes, yet he continued to have the seizures, infact much more frequent, six in one day! Thats when I found this site! I copied all the information I could find to help about NCS. Shopped for new doctors, found one's that would listen, the new cardio.. sent him to St. V's in Toledo and they did the HUTT and confirmed NCS and suspected POTS, and then I insisted he needed to be sent to Cleveland Clinic, which they confirmed the POTS.

CC weaned him off the antiepileptic drugs. CC put him on a low dose of midrodine 1/2hr before exiting bed, Toprol, lots of salt and a min. of 2 liters of H2o, plus sit ups, and thigh muscle strengthing excersises. I believe they want a blood pooling test yet?

Over a period of a couple of nights i scanned many post and made many notes to help me in proving my point. This dinet web site and the forum helped me in my presentation to the physicians and to convince them to think outside the box.

He has an appointment in late Nov. with Grubbs, and I am looking forward to this myself.

Again, this is a great site!


Link to comment
Share on other sites

hi bill,

i am glad that you find this site so helpful, it is for sooo many of us. i always call it my lifesaver! you are a real good dad doing all this research. a lot of dad's are very different (although good willing). i can understand your excitement to go see dr grubb. i would love to see him too, but as i'm in europe (and it won't be paid for) i don't think i will be able to.

good luck to both you and your son,

corina :)

Link to comment
Share on other sites

Hi Bill

I agree with you, this website and forum are indeed very helpfull! I'm glad to hear your son is doing so much better! Thanks for letting us all know.

Take care,


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...