brethor9 Posted July 17, 2011 Report Share Posted July 17, 2011 Hi Everyone!!First off I just want to say thank god this forum exists!!!! If it wasnt for all of the people on here and the wealth of information I would know absolutely nothing about this disorder! So brief background; I am a 36 yr old wife and mother of 1- 8 yr autistic son. 3 years ago I started suffering from subtle symptoms at first..mainly 24/7 head pressure with lightheadedness fast forward to my partial hysterectomy in 2008 and suddenly afterwards I was completely engulfed by physical symptoms I had never battled before mainly absolutely horrid adrenaline attacks which my fam GP passed off as panic attacks although I had never ever suffered anything like that. Over the next several years more and more distressing symptoms came about......episodes where I literally felt like I was having a stroke, severe balance issues, severe lightheadedness, mottling in my legs, my body temp would tank so low I would be having hot baths 3x a day just to keep warm and yet once I was in became so hot I had to get out. The worst episodes came at night...adrenaline surges that would wake me from sleep with pounding head pressure, loss of balance, heart rate through the roof, shakes so bad, sweating and then chills so bad...these episodes would last for hours and were utterly exhausting and terrifying.... emerg would do nothing. Finally after firing my GP and stumbling on some good specialists I was sent to an autonomic facility at Hamilton Mcmaster Hospital here in Ontario Canada where they finally diagnosed me with; POTS with beta-adergenic hypersensitivity and highly elevated norepinephrine at baseline and upon changes in position along with hypovolemia.I have been started on a beta blocker (which I find causes nothing but chest tightness) and florinef which helps but I find finding the right dose is difficult. I also suffer from severe spinal pain and have been having some nerve issues because of that.So my question to everyone one is....am I considered to have Hyper-POTS? what medications have been the best for others? Does anyone suffer with nerve pain and is there a med they can recommend for that??Sorry for the long post....its so overwhelming!! and when you finally find people who understand....I just dont even know where to start lol!!I would love to hear from anyone any advice or guidance would be hugely appreciated! Here in Canada this disorder isnt heard of much....makes it hard to get good informationMany Thanks!!Bren Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 18, 2011 Report Share Posted July 18, 2011 Hi Bren and welcome!I also fired my GP and stumbled upon some good specialists, and I do mean stumble. Seems to be a common issue on this forum. And the lightheadedness and shaking chills, oh boy yeah. I don't have POTS so can't share good treatments for that, but you will get lots of others who can. Just wanted to welcome you and I hope you feel better soon armed with more info and good doctors. This site is awesome. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted July 18, 2011 Report Share Posted July 18, 2011 Hi Bren,Wow...it sounds as though you are miserable. Hopefully with your treatment underway you will improve. I did...markedly. I take a low dose Beta blocker (Inderal) and very low dose of Celexa for my GI issues. Both of these help me but I am still not immune to "storms" (that is what I call my attacks). As a matter of fact, I had one last night: HR jumping all around from 71-120 in a matter of minutes (up & down, up & down), extremely nauseated, diarrhea, & feeling of anxiety. Regarding your questions:HyperPOTS...not sure but it is my understanding those of us (I've never actually been diagnosed by the doctor)that have this will have a HR increase and BP INCREASE upon upright posture whereas lots of POTS patients have a BP drop upon rising. If they drop low enough they pass out. My BP can rise just from me lying in bed and inclining upon 2 pillows. So I'm pretty sure I have hyperPOTS.Meds: as I stated above, Inderal 2.5mg once daily & Celexa 2.4mg (normal dose is 10mg). The key is to start your meds slow & low. I have lots of Chest Pain but find my meds to help. I likely need a antacid too.Nerve pain: I have been diagnosed with fibro but my symptoms are few and far between since I've been treated this past year. I do occassionally have these extreme sharp shooting pains in my abdominal area that I can only relate to what shingles might feel like. But Thank God they do not last long. I have no answers for you there.This forum is a wonderful and supportive place. You will feel right at home here...welcome! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 18, 2011 Report Share Posted July 18, 2011 I'm so glad you found us! I had nerve pain and found gabapentin to be helpful not only for the pain, but also for controlling some of the adrenaline issues. Clonidine is sometimes used for hyperadrenergic POTS, but it dropped my BP too much. I'm currently trying paroxetine, an SSRI, to help with fatigue and other symptoms. But my BP is still often too high or too low. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted July 18, 2011 Report Share Posted July 18, 2011 Hi Bren,I was also diagnosed by Dr. Morillo in Hamilton. I have Hyper POTS with alpha but not beta hypersensitivity apparently. I share many of the symptoms you report, especially the night episodes. I am going through the process of being diagnosed with MCAS (aka MCAD) and for me, the medications for this disorder have helped a lot, though I am left with significant and disabiling POTS. Beta blockers didn't help me, and they are not recommended if you have mast cell issues.I actually have an appointment with Dr. Morillo this week - I will let you know if I get any amazing new insights. Welcome here!Sarah Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 18, 2011 Author Report Share Posted July 18, 2011 Thanks everyone for your kind welcomes!!! I am literally overwhelmed by everyones knowledge and kindness. Its so nice to know I am not the only one suffering from this sometimes "invisible" disease. There is light at the end of the tunnel....Bren Quote Link to comment Share on other sites More sharing options...
jknh9 Posted July 19, 2011 Report Share Posted July 19, 2011 Hi Bren,I have the adrenaline surges too, particularly at night! I have trouble falling asleep (probably due to Florinef) and then often I wake up a few hours later with my heart racing, shaking, legs all sweaty so I'm chilled but I also feel hot...sounds like you know the feeling to a T! Like you, my GP also passed it off as panic disorder. It was difficult to explain the adrenaline, all I could describe was feeling a "rush" with lightheadedness and nausea and a feeling like I needed to move or escape or something. I'm recently diagnosed too, with NCS/NMS and POTS, so I don't really have any answers. Just wanted to let you know you're not alone Hang in there! Quote Link to comment Share on other sites More sharing options...
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