CallieAndToby Posted November 3, 2020 Report Share Posted November 3, 2020 So this is what I posted on Facebook and got no responses: "Hello everyone. I'm in a bad situation and I don't know that Hyper POTS is the correct diagnosis (I have had a tilt table test). When this all started in 2008, I started running on adrenaline 24/7 for an entire year then I crashed and spent the next year bed bound and the next decade stuck at home. I had a chance to do IVIG for something else and that really solved the dysautonomia problem. But now it's back and I think being diagnosed with Essential Thrombocythemia, which is blood cancer, my platelets are too high, and the medication I was on and then ripped off of, has triggered some kind of beast. So again, for 2 months running adrenaline, then for the past 2 weeks, 2 seizures, crashing, severe mental fatigue (I don't feel the physical fatigue), standing up and doing anything I get very sick. Now here where the problem really lies, I have severe interstitial cystitis, I can't drink much and I can't drink sports drinks, when urine hits my bladder and I've been drinking water, it feels like acid, the burning, urgency, never feeling empty, so I'm in a bind. I went to my neurologist yesterday and he said the seizures were from dysautonomia. What happens with me is I have resting HR of 104 but upon standing (last they checked) my blood pressure dropped very low and my HR went up to 140; I'm on a beta blocker now but my blood pressure still so low. Nobody will do saline iv's and they help. So I have severe dysautonomia I believe was triggered by the cancer medication, I have chronic blood cancer in which my platelets get way too high, and I have interstitial cystitis/painful bladder syndrome. Does any of this sound familiar? I do the smallest of tasks and I'm just crashes, exhausted. Also, no stimulant will actually work, all of them including adderall make me very very tired, crashed, sick, even caffeine sends me to bed. My records are being reviewed at Vanderbilt so I'm hoping I will get an appointment. I just turned 35, no husband ever, no kids, no ability to work, I just want to take a walk without feeling like I'm dying afterwards, I want to work!!! I'm a great photographer, but I need to finish schooling as that got interrupted by this stuff! I should note that the bladder problems started when I was just a small child. If anybody can relate to something, please let me know!" Quote Link to comment Share on other sites More sharing options...
cmep37 Posted November 3, 2020 Report Share Posted November 3, 2020 Big hugs @CallieAndToby22 POTS is bad enough but POTS and cancer must be nearly unbearable. 45 minutes ago, CallieAndToby22 said: I just turned 35, no husband ever, no kids, no ability to work, I just want to take a walk without feeling like I'm dying afterwards, I want to work!!! I can definitely relate to this! I'm 42 and have had severe dysautonomia since I was 26. My fiancé left me when I was 29 after caring for me through 3 years of severe dysautonomia where I was almost completely bedbound. I couldn't blame him, he was never going to have a normal life with me and he desperately wanted children which I clearly couldn't cope with! I have a law degree that I worked enormously hard for and had to give up a job that I loved yet I can't even manage to do voluntary legal work any more. I live with my parents and feel constantly guilty that I am spoiling their retirement but I just am not well enough to live on my own. I try to exercise but vomit every time I take a 10 minute walk as the rise in my heart rate triggers a gag reflex. I try so hard to think positive and I have improved a little - I am housebound rather than bedbound but leaving the house for any more than a couple of hours triggers a major flare. No medication has worked for me and no doctor seems interested in helping me so I just keep muddling on in the hope that one day things will get better.... Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted November 12, 2020 Author Report Share Posted November 12, 2020 On 11/3/2020 at 1:27 PM, cmep37 said: Big hugs @CallieAndToby22 POTS is bad enough but POTS and cancer must be nearly unbearable. I can definitely relate to this! I'm 42 and have had severe dysautonomia since I was 26. My fiancé left me when I was 29 after caring for me through 3 years of severe dysautonomia where I was almost completely bedbound. I couldn't blame him, he was never going to have a normal life with me and he desperately wanted children which I clearly couldn't cope with! I have a law degree that I worked enormously hard for and had to give up a job that I loved yet I can't even manage to do voluntary legal work any more. I live with my parents and feel constantly guilty that I am spoiling their retirement but I just am not well enough to live on my own. I try to exercise but vomit every time I take a 10 minute walk as the rise in my heart rate triggers a gag reflex. I try so hard to think positive and I have improved a little - I am housebound rather than bedbound but leaving the house for any more than a couple of hours triggers a major flare. No medication has worked for me and no doctor seems interested in helping me so I just keep muddling on in the hope that one day things will get better.... I'm sorry. Yes my bf right now wants children and I'm like, can't give that to you right now. Quote Link to comment Share on other sites More sharing options...
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