Hi!
Ive just been reading your posts and it sounds as if you have been having exactly the same problems as i have! I was diagnosed with Vasovagal Syncope when i was 19 and it didnt seem to cause an isssue after that, except for when eating. However, Im 25 now, and in March this year I started to feel dizzy and black out at the drop of a hat. And yes, it is so very frustrating and embarrassing, people always think Im diabetic, epeleptic or drunk/on drugs etc... Its been hardest to actualy get an answer out of Doctors, that was until I heard of CRY, Cardiac Risk In The Young. Its based in London, universtity hospital Lewisham, and it has changed my life.
They have a website, please check it out, Dr Shama who I saw suggested Cardio specific Beta Blockers, Cardicor, they dont have briliant side effects to begin with but two months on im back at work and starting to live a reletively normal life. Compression socks are also great, it stopped the numb legs and pins and needles i get all the time. I also have a medical tag, www.medicaltags.co.uk, its saved me from being treated as a druggy or being mistaken for an epeleptic etc, I hope this helps a bit, I know how frustrating it is, please check out CRY, the screening and treatment is free and they're experts.
good luck, maggie
I am going through the similar work-ups and have very similar symptoms to JinLondon. The doctors think that it is Postural orthostatic tachycardia syndrome (often referred to as just postural tachycardia syndrome or POTS) or Neurocardiogenic Syncope. I have to have the cardiac work-up/tilt test. This has been going on for 4 years and has been getting progressively worse. When I stopped birth control a few weeks ago, it became almost constant.
my mum has similar symptoms and has been diagnosed with Menieres.
Worth checking out? Hope you're feeling better :)
My blood pressure doesn't "fit" either. Funnily enough it is lower lying down than sitting up and lower sitting than standing...
No cramps. Just headaches. And tired....sooooo tired afterwards.
Jin - I have very similar incidents as you describe above. I looked up Neurocardiogenic Syncope and it says that blood pressure drops. I had an event on Sunday, May 18 at a festival where there were paramedics on scene. They checked my blood pressure during the incident and it was high - 172/90 so I don't fit Neurocardiogenic Syncope. What is your blood pressure when you have the symptoms?
I' m reading about mastocytosis, a rare allergic reaction, and disatonomia, a neurological disorder. They sound the most likely for what I'm going through.
I also get very painful abdominal cramping. Is that part of your experience?
Sign me -
Equally frustrated
Thank you for your post!
I am doing a tilt table test next week and just finished a week long ECG (however palpitations, etc have virtually stopped think I got them in the beginning with these episodes because I felt them coming on and got scared.). GP now thinks it's some form of epilepsy, so am also seeing neurologist soon.
It's been a looooooooong three month and I had some truly horrible experiences passing out outside but hopefully I will now actually know what's going on soon.
My 16 year old daughter has been diagnosed with neurocardiogenic syncope ? vasovagal syncope too know names and she takes a pill to help keep her blood pressure up and to help keep her fluid up and drinks the gatorade but still has episodes and after the bad headache and is very tired ,I have had her to several Doctors and her tilt test was positive in 3 minutes this is how they determined her problem,Best of luck to you!
Drink alot of gatorade 60 plus onces a day
Tons and tons of water, some juice. Not big on soft drinks or alcohol, so have those only very occasionaly. Also drink tons of herbal tea. (Gee, I sound like a total loser...).
Have had to come in for meeting with General Manager at work yesterday and was told to not come into work for at least a week. They are being nice about it and giving me the time of paid, but I am really unhappy about it as I actually love my job and am lucky enough to work with most of my friends. I am seeing GP tomorrow and am hoping that if I show him ECG paper he can just get this sorted finally. Then I can just get on with my life.
How much do you drink and what type of fluids?
Thank you. It does sound like it.
I spent all of Monday night in A&E again after fainting in Trafalgar Square. The Paramedic and Cops that found me thought I was epileptic because of my "shivering", but when I was seen 4 1/2 hours later I felt fine, just tired, and they still don't know.
Yesterday, I fainted at work and was again taken to A&E, in the ambulance they did an ECG and picked up palpitations something else that I can't remember the name of and the paramedic said that was almost certainly what is causing me to black out. I checked myself out after 2 hours, because I was still incredibly exhausted from the night before and knew they wouldn't actually do anything but tell me I have to see a cardiologist (which I am on the 30th), till then I'll just hope I don't faint in front of a bus.
Oh and last night and several times today I had chest pains for the first time. I have had pain in my neck before but my chest hadn't hurt before even though they keep asking me about it.
These event does not have to happen with exercise. Most people faint, or near faint, have headache, become pale, shivers. Lots of thing can occur before the faint(presyncopal) signs I believe is what they call the signs. I believe numbness, ringing and all those symptoms are listed. Search out info about Neurocardiogenic Syncope and read the info about it. It may be of some help. This is treatable with beta blocker. My son had a tilt table test today and it was positive.....he progresses on to seizure probably because he doesn't faint and continues to stand even in a state of confusion...he is probably and unusual case do to the seizures... But look in to it....
Thank you, both of you. I don't even know what ENT (English is not my mothertongue) is, but will google that. I am seeing my GP again on Friday and will suggest it.
Lee, I am not sure your son and I have the same thing as my "attacks" don't seem to be in relation to exercise, hot/cold or really anything constant that I was able to figure out.
I just hope I get some kind of answer quickly and can then do something to fix this. Happened outside the other night and I was alone, some cops approached me obviously first thinking I was on drugs or something and then proceeded to take my ID from my bag and checking whether I escaped from a hospital... not a very nice experience trust me, especially when you can't speak properly or see anything.
Have you ever been tested for Neurocardiogenic syncope? There are other causes of syncope that can be related to heart arrthymia. I have a 15 y\o son that has been treated for 2 years for epilepsy unsuccessfully. His seizures only occured with hot showers, running, and sports. He just had a cardiac workup, and they now thing it is neurocardiogenic syncope. Most people just faint with NCS, but if the brain has enough hypoxia (low oxygen), a seizure can occur. Hope this may be some additional info to search out.
Hello.
Have you been assessed by an ENT specialist yet? You seem to have vertigo. And it is essential to detect any dysfunction of the vestibular apparatus (inner ear) in such cases.
Vasovagal syncope and/or benign positional vertigo can also be considered differentials.
Can you ask for an ENT specialist's referral?
Regards
Anyone? Happened again last night.