AbeFroman

Hello Pre, Your story sounds very familiar. I am a 46 year old male who has dealt off and on for years but recently got worse. Before any POTS diagnosis I was told I had depression and anxiety and tried almost every med out there, including Fetzima. I remember Fetzima clearly because I felt it was working great and after about 4 weeks it made me very manic! I was up for two days making plans on writing a book or two, moving furniture, cleaning and overspending. Did not go well. I tried different strengths to no avail. For whatever reason I seem to have a very bad time with SSRI and SNRI's the main problem usually is sexual side effects but there have been others as well (headaches, sweating, etc.). Being a man with no drive does NOT make depression or anxiety better I have learned that, especially when married!! I am currently on Trintellix (formerly Brintellix). It hasn't helped POTS symptoms much but does tamp down depression or keep my mood more even. I have been on it for about 10 months and it's been..well, EH! Not amazing, The sexual side effects tend to wane, some days are ok others not so good. I would love to be more help but as I say for whatever reason I tend to exhibit most side effects from psych meds. I can say for sure my least favorite was Cymbalta, I had withdrawal brain zaps from that for at least a month! No fun. Also, instead of the tilt table you can try the old fashion way. Supine, sit, stand test. My Cardiologist did it first in office, Basically keep a Heart rate monitor on an check it after 2,5 and 10 minutes in each position (although he only had me sit for 2 minutes) a jump of 30+ bpm from supine to standing is a good read for POTS. Hope this helps. Best of luck! -A

Hey Lisa, thanks for the response. It all sounds VERY familiar! I hope you can find a good doc that can may help give you SOME relief. Unfortunately when I went to my general Dr. first and mentioned POTS they thought I was asking about Pot, the drug! It is difficult as it seems it is not a very common "syndrome". Hopefully more will be learned and new research will help sooner rather than later. At least for me it has helped greatly to find this website and forum and see I'm not alone or crazy! Lol Best of luck!

Wow this is good stuff! Thank you very much Sarah, I have never heard of CRPS but will definitely look into it now. Very strange "Syndrome" this seems to be. The variances, the timing, changes, etc. It seems to be a trend with Dr.'s blowing of people with conditions such as POTS, Fibromyalgia, etc. It is so incredibly frustrating knowing your own body and knowing something is wrong but being told basically, "it's in your head". I really started doubting myself and questioning my sanity. Thanks to THIS forum I have been proven correct and it is NOT "in my head". I can't tell you how many other medical forums I looked at and could find similarities but things just didn't fit. When I lurked on here everything just clicked. As if a jumbled puzzled just got put together, complete and correct. To anyone else reading this or lurking on here, NEVER GIVE UP! You know your body, you know things aren't right, you are NOT crazy. I to now find myself wondering how I lived all those years, lol! Anyway, thank you again for the information, much appreciated.

vtpixie- I notice some of the same as you. I definitely have the brain fog and do seem to get dizzy/light headed more often. I look back now and realize I did get lightheaded frequently and just assumed Maybe I needed more sugar. I, however, would never be assumed to be a ballerina. Lol! I hope you get help and find answers. Amyschi- So much of this connects with me. I was diagnosed with Fibromyalgia as well and have a lot of muscle pains. I also suffer from ocular migraines and migraines that seem to start as shoulder/neck tension headaches. Also, relating to ear issues I have developed tinnitus in my left ear, fortunately though I am still don't get dizzy often. It is not the dizziness that is debilitating me it is the fatigue and pain....mainly. Again while I had occasional symptoms when I was younger they definitely ramped up after the first back injury. I do indeed believe I have neuropathy as you mention. It is something I will be bringing up with the Dr. for sure. I saw the new Cardiologist Wednesday and he agreed it sounds like POTS. He did the lay down/ stand up test and seemed even more convinced. He is doing a few other tests just to make sure there is nothing else which I very much appreciate. I wonder if maybe the change in severity maybe due to the back injury OR a medication I took (pain pills, muscle relaxers, steroid shots). At this point it is a moot point but still something I am curious about. It is just amazing to me that in approx. 15 years I went from in shape, walking 36 holes of golf in the So.Cal sun and working 60 hour weeks and having a family to the mess I am today. Completely NOT my choice! It is as if my body flipped a switch and turned bizzaro me..lol! Anyway Amyschi and vtpixie thank you again for the replies. I very much agree with you Amy, nobody else but fellow sufferers realizes what we have to deal with. Hour to Hour, Day to Day! God bless!

Hey BuffRockChick, I'm glad you are getting answers. I am starting this same process now and it does indeed help when you see others out there dealing with the same issues. It also must be very validating to get a diagnosis and FINALLY know what is wrong and it's not just in your head. Best of luck to you.

Thank you both for your insight and and advice. I really appreciate it. Its interesting to see stress causes aggravated symptoms. I was always an easy come, easy go personality, things would just not really bother me. Until I turned about 30. Then life, career, family just truly took a toll. Strangely I noticed stress affecting me more and more. Not just mentally but physically but still thought this how others always felt stress. Obviously there really was more to it than that. I have much to learn and a long road ahead but finding this site and forum has been a huge help already. Thank you again, -A

Hi everybody. I have been perusing the site for a few months when I first noticed my heart rate jumping while standing. A bit of a background and then my question, please hang with me...lol. I am a 45 year old man 6'3" and now slightly overweight. I have always had times of dizziness when standing since I can remember but it wasn't frequent or bad enough to warrant noticing really. I was active, had a high metabolism, and other than occasional migraines, I assumed pretty healthy. Looking back now though I do see things that stick out as warning signs. Then 16 year ago things changed. I hurt my back at work just bending down to pick something up. Since then my body has completely flipped. I seemed to recover from the back pain, but leg/foot pain remained. I went back to work (retail manager) and suffered through while taking pain pills to get by. I started getting what I though were anxiety attacks. My heart would race and I would get VERY dizzy. I re injured my back, then fell into a deep depression, I believe due to my body not cooperating as I had thought it was supposed to! Things that were annoyances became unbearable...I.e exercice (which I loved and I was an avid golfer), heat, foot, leg, wrist pain and chronic fatigue. I also noticed I was becoming less focused and, basically, dumber. I was told it was all just back pain and depression/anxiety. I never actually believed my foot pain was just from my back, btw, pain always started in my feet and worked it's way up my leg, not vice versa. Work became unbearable. I went through the nightmare of getting disability and haven't been able to work since. By pure luck my general Dr. noticed my heart rate was routinely high and sent me to a cardiologist. The cardiologist ordered a 3 day wearing of an EKG. During that I noticed my heart rate would go up 30+ bpm upon standing and go down when I laid down. That information led me here. I brought it all up to the Cardiologist and she said I may have POTS but seemed to not know much about it. I talked to my general Dr. And showed him in his office my heart rate changing. That was enough for him and he is sending me to another Cardiologist. Sorry for the background but 1) just needed to get it off my chest and 2) thought it might help. Now my questions. 1) Anyone else experience worsening symptoms as they got older? 2) Anyone experience worsening symptoms after another injury or illness? Thank you all for your help. It has been a godsend finding this forum and website. I suddenly feel less alone and much more optimistic. -A