Needing Help Over Diagnosis
Posted , 3 users are following.
My son is 18yrs old and a year ago he fainted whilst at work then twice more that evening when we decided to take him to a&e
?These faints came on without any warning signs
?He was kept in overnight for tests
He ended up in hospital several more times over the following weeks
?Fainting continued at at 2 or maybe 3 episodes a week
Finally they said he had vasal vagal syncope
?EEG, ECG and all heart monitoring have came back clear
?His fainting episodes increased so was piut on fludrocortisone (1/2 a tablet every morning) and sent for a tilt table test
?He was then told it was not vasal vagal syncope but PoTs
His fainting episodes continued but the fludrocortisone stabilised them so they were no longer as regular
He constantly has a headache which is worse after fainting
These fainting episodes come on with no warning signs at all
He has no recollection of fainting but is slightly confused when he comes round and usaually goes for a sleep
?About 4 months after his diagnoasis he ended up back in hospitsal for a week as he lost his ability to speak, it started as a stutter and ended up sounding like someone who is deaf
?They could find no reason for this happening and he communicated mostly by writing things down, this lasted for around 3 weeks before his speach returned to normal
this has never happened since
?Fainting episodes gradually became worse and is fludrocortisone was slowly increased
?A year on he is having 4 fainting episodes a day everyday without any warning signs and is now on 4 fludrocortisone tablets a day
The confusion does not seem so bad now, or maybe he has just got use to it but he still has a constant headache
?New symptoms have also developed, somedays he just feels really ill nothing spercific just ill, has trouble sleeping, gets very tired easily, easily confused, forgets things regularly, writing has deteriated, still stutters slightly sometimes, sometimes he has episodes where he just doesnt seem like he is here and his legs hurt and sometimes feel numb and dont seem to work properly and occassionally give way
He uses a wheelchair when we go out as he is safer than walking but it now helps due to getting very tired when walking
He has only seen a cardiologist twice and on our recent appointment he said he did not think it was pots as his symptoms did not fit as he faints when laying down, sitting and standing
?Hed was fitted with a monitor to check his heart but there was no changes so he has been referred now by the cardiologist to see a neurologist but the appointment is not until December
I have trawelled the websites, read all the books i can find which isnt many and read some posts on this forum and he really doesnt fit to me in the PoTs category and i am really concerned and i just feel like no one is taking this seriously, everything is just a very very long waiting game
Sorry for the long post
0 likes, 4 replies
kenaz sarah40083
Posted
Sarah, I am so sorry to hear of the trouble your son is having. This all started with severe migraines starting in 1968 when I got hoime from Vietnam. Nobody ever told us about Agent Orange Contamination and PTSD wasn't even known at that time. I one thing I would think of, where do you live? Farmers use many chemicals that can have adverse affects on the body. What is your water source and what is your envronment. There are so many factors and I hope you get some answers. I am now 70 and I went through some of your son's symptoms but not nearly as severe. I send best wishes and feel free to ask whatever you would like. Veterans Administeration has been good at stonewalling us so I have to do my own leg work. I have been figthing VA for over 5 yrs when Mayo clinic wanted to research Autonomic nervous Dysfunction. I had brain surgery in 2008 and a pacemaker in 2014 and am now taking Prenidone twice a day. Good luck and God bless, Ken
sarah40083 kenaz
Posted
Thank you for your reply
What is VA?
Rat545 sarah40083
Posted
Sarah, I just typed out a long reply then it went into outer space so I hope this does not show up as a duplicate. I am a 71 yo female, several years ago I began having near syncope episodes (felt like I would faint but never went completely out).. then, one day as I was driving I did faint completely, came to while bouncing in the median. Went to my GP who referred me to an electrophysolotist.. which is a cardiologist who specializes in the electrical system of the heart. After reviewing my records which included an echo cardiogram, stress test and other cardiac tests he told me this: "you have a condition where the electrical system of your heart sometimes misfires causing you to feel faint or sometimes completely faint". I was already taking Atenolol 25 mg 2xday. He prescribed Flecainide 50 mg 2xday in addition to the Atenolol. That worked for a long time (probably 2 years) then I began having mild symptoms. He increased the dose of Flecainide to 100 mg 2xday. That worked for a while then had to be increased again to 150 mg 2xday. Several months ago I changed electrophysiologists and was told I should get a cardiac ablation to treat the underlying cause of the fainting. I made an appointment then became so nervous I cancelled it. Later he convinced me that this procedure would greatly improve the quality of my life. On Aug 26 2016 I had the procedure and initially did great. He decreased the Flecainide to 100 mg 2xday. After a few days I had more near fainting spells.. He reduced the Atenolol to 12.5 mg a day. This has worked well and now I am symptom free. Doc said that eight weeks after surgery he will try me with NO Flecainide to see how I do. I suggest you google electrical system of heart, electrophysiologist, Flecainide, etc. Good luck with your son's health.
kenaz sarah40083
Posted
Hi Sarah, VA is the Veterans Administration. I have numerous health issues accosiated with Agent Orange, a spray chemical that was used as a defolient in Vietnam. Veterans from the Vietnam era are all suffering major heaalth issues and aren't getting much help. The contamination can be passed down several generations. If VA accepts the claims of veterans they would also be responsible for the generations to come. I hope you get help, I am praying for you and your family.