calisto_bee Posted October 12, 2013 Report Share Posted October 12, 2013 Hello everyone,First time poster, long time lurker on the Dinet forums.Im a 32 year old female from the UK. My journey with POTS has so far been a long and arduous task.....in many ways it is only just beginning!4 years ago I started having lightheaded/off balance sensations when out and about. Initially I tried to ignore it, but eventually it got so bad that I was bed ridden for a number of weeks. My GP sent me off to an ENT specialist who after a number of tests diagnosed me with "Complicated Migraine" and referred me to a neurologist. I wasn't completely convinced with the diagnosis, but doctors know best right?!The neurologst performed a MRI scan of my brain and spine, concluded that I some degeneration of C4, C5, C6 and C7 but other than that everything clear (coincidentally at this time I developed a "buffalo hump" at the back of my neck....Cushings Disease was excluded as was Spinal Stenosis) Diagnosis of "Silent Migraine" was confirmed, and on my way I was sent. In the mean while I begin to start having more symptoms other than just the lightheadedness: severe sweating, weird sensations in my legs, blurry tired eyes.Fast forward to January of this year, and I suffer what can only be described as a major crash. I am so dizzy, I struggle to get out of my bed to use the bathroom. my only relief is lying down. My GP is sent out to visit me, and for the first time in 4 years, he takes my pulse.....so alarmed by the high reading I am sent off to a cardiologist at my local hospital.One 24 hour ECG/BP monitoring later, and my cardiologist gives me a tentative diagnosis of POTS. My heart rate range over the period of 24 hours was from 53bpm to 193bpm. My blood pressure appears on the low/normal side of things when supine, raising to level 1 hypertension when standing. I am prescribed Propranolol 80mg and Florinef 1mg daily,high fluid and high salt intake and referred to a POTS specialist at a larger hospital.I am currently now waiting to see the specialist and have a Tilt Table Test. Whilst currently able to get out of bed, my life has been affected dramatically. I have had to give up work, and struggle to do most things. I feel my life has been taken away from me, its an awful feeling. I worry that I will never be the same again.So there's my POTS story in a nut shell......hope I haven't bored too many of you!I have many questions so hope to be able to post in the future.Thank you for reading. Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 12, 2013 Report Share Posted October 12, 2013 Hi! Welcome but oh, so sorry to hear that you have joined the ranks of fellow POTSies. Glad you finally had a doc figure out what was going on with you and get you some more appropriate treatment started at least. Hopefully the specialist will be able to fine tune things a bit and get you feeling even better. We all keep hoping anyway..... Quote Link to comment Share on other sites More sharing options...
corina Posted October 13, 2013 Report Share Posted October 13, 2013 Hi calisto, welcome to the forum! Hope you that your specialist visit will help you get back on your feet! Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 13, 2013 Report Share Posted October 13, 2013 Hi and welcome to the forum. It's great to hear that you will have an appointment soon with a specialist. That's a good thing because for many of us it was a very long wait. Your symptoms sound very familiar. My son is wheelchair bound but is hoping to gain back his walking legs soon. He is homebound and cannot attend school. Like you, he wants everything back to normal. Hopefully your doctor will have some answers and your life will get turned around quickly.Rachel Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 13, 2013 Report Share Posted October 13, 2013 Hi calisto_bee, and welcome.Hopefully your upcoming specialist appointment will help you get some much needed answers. Meanwhile try to keep a positive mind frame and by all means don't give up hopeAlex Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted October 18, 2013 Report Share Posted October 18, 2013 welcome to the forums! I'm also relatively new to posting on DINET and relatively newly diagnosed with POTS (though struggled with symptoms for over a year). I hope that you find lots of help and support on here! And I hope that your appointment with the specialist is a good, productive appointmentbest wishes-fainting goat Quote Link to comment Share on other sites More sharing options...
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