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RobinB

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About RobinB

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    Chicago

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  1. @Sam4877 I may. I have not officially been diagnosed with that, however the specialist who diagnosed my POTS did a few tests and declared I am hypermobile but did not put it as an official diagnosis. I had tingling and numbness at the start of my health decline and it got better and now it’s back. If I cross my legs or sit on my hand for a few minutes it will go numb. That may be normal for everyone though? I remember having that happen when I was a kid too, long before I had POTS. I have woken up in the middle of the night with absolutely zero feeling in my arms. And I was laying on my back.
  2. I don’t know if it’s normal with POTS but I have it too.
  3. @p8d thank you for the suggestions. I actually saw Dr. B 4 years ago and he was the one who diagnosed me. Since then I’ve changed insurance and my PCP said all the testing they could do has been done. She won’t refer me. I could see about going back to him in about 6 months and see if anything else has come up. You’re right, if we aren’t going die, then we need to try to live. It’s just all so depressing. But I will not give up and I will not stop looking for answers.
  4. @Pistol yes I did have an epidural. Hmmm I have seen some posts about CSF leaks on here, but I don’t have the classic headache. I do get headaches but not necessarily orthostatic headaches. I do have tinnitus, vision issues and sensory issues that come and go as well. Thanks for the suggestion. I assume I can reach out to Cleveland Clinic to inquire about this? I’ve had numerous MRIs but nobody has mentioned any leak.
  5. Thanks for responding! I'm glad to know you have recovered some. I had a very stressful pregnancy and horrible delivery. I had to be put on oxygen and was throwing up non stop for hours after he was born. I haven't felt right since. I felt better laying around so I kept just laying around for years. I don't expect to ever be normal again, but I would like to get a to a point where I am not afraid to leave my house due to horrible symptoms. I have pretty bad gastritis as well which I forgot to mention and I have been reading lately about anti-inflammatory and low histamine diets. I would definitely try one, it's just that my capacity to cook for myself is currently very limited due to symptoms. My go to is fruit, quick snacks like crackers or yogurt and whatever I can microwave quickly. I can actually ride my bike for even longer it's just that once I'm upright my heart rate shoots up and stays there until I'm back down. It's the extreme dizziness and floating feeling that I can't handle. I'm very off balance. Can I ask how much you have recovered from your POTS symptoms due to your diet changes? The bathroom issues are the least of my worries, however if they are connected I'm all ears. If I could have some hope that it would improve me I would be willing to try and push through symptoms to get the foods I need to eat and cook them etc. Can you tell me more about what vitamins and supplements you take and what you eat? If and when I am able to switch my insurance I plan to see an endocrinologist and would love to get to Cleveland Clinic. Fingers crossed. I tried to get into Mayo but they won't take me.
  6. I have been sick for years and have the POTS diagnosis but that's all. I have many symptoms that I don't believe are technically related to POTS and I have been searching for my cause for years. I'm at the point now where I don't know what to do next. I seem to be getting worse and spend my days just laying around. Everything is a struggle. My PCP has literally thrown her hands up and told me there is nothing she can do for me. She won't refer me to any specialists and I cannot self refer due to having an HMO. I do plan to switch to a PPO at the end of this year so I can see the specialists I want to see. I have chronic diarrhea (sorry TMI), frequent urination (at least once every 30 minutes), tingling and numbness in my feet, hands, legs, arms, and face. I have loss of feeling on my right side and seem less coordinated than the left side. I feel completely drained 24/7. I'm shaky. All blood tests come back normal for the most part. My fasting blood sugar is a bit high and I have low HDL cholesterol, as well as low lymphocytes. The problem is I cannot seem to get care no matter how much I plead. I'm told I just have to live with it. I am 100% certain that something is causing my POTS and I do not want to rest until I find it. This stupid disorder has stolen 10 years of my life and hindered my relationships with my family and friends and I cannot take it anymore. My PCP says I have had sufficient testing, but when I look at the list of causes for POTS I haven't been tested for even half of them. So how can they be sure they aren't missing something? I feel like I will die every single day. I don't even know how I'm still here. My initial theory was that I really was just deconditioned. I was a very active child and teen and was waitressing from the age of 16 to 23 when I gave birth to my son so I was on my feet for 10 hours a day minimum (even while pregnant). As soon as I had my son I was laying around all day as I was tired and off work. Several months later is when I started being symptomatic. So I wasn't on bedrest but my activity level was down to almost nothing. It has just continued to get worse. Could going from being that active to extremely sedentary be enough to trigger POTS? And the fact that I have never gone back to that much activity be keeping me sick? I know it's a long shot and my other symptoms would point to that not being likely. I had a better period last summer where I was actually able to exercise upright and even did a warrior dash. It knocked me down for days and was extremely difficult. That period of feeling maybe 30% better only lasted less than 6 months. What would you guys do? Should I pursue the cause? Or should I just accept that I will be like this for the rest of my life and resort to living a life of doing absolutely nothing but being a burden? The only tests I have coming up are an echocardiogram (have had several) and an EMG due to the issues with the right side of my body and a recent MRI showing nerve compression (neurologist says the neck and spine issues are not the cause of my POTS). Up until now I have been pushing through symptoms and trying to ignore it. That hasn't proven effective. I am rapidly becoming deconditioned even more now since I am home due to covid, which is making my life even more difficult. I had planned to start forcing myself to get up again. Like if I can get up for even a few minutes every hour maybe I can retrain myself to be upright. I do ride my recumbent bike (not pushing hard at all) for about 20 minutes a day broken into 5 minute chunks. Any advice is welcome. I have gotten so tired of trying to advocate for myself and getting nowhere. I have looked into functional medicine. Spent $300 for a consultation only to find out that it would cost me several thousand more to get the tests done that they want to do. I cannot afford that. This illness has already taken all my money. I should also note that my entire family is healthy, no issues like this or anything else really. So whatever it is I do not believe it's genetic in nature. At the moment I feel completely overwhelmed with all the information I am finding online and really not sure where to go from here. I know there are many others who are worse off then me, but this is my life and it's unbearable. I'm sorry for ranting I just want some help and I'm desperate. I pray to God every night to help me figure this out.
  7. That’s what I’m trying to find out. The neurologist said no, but I know better than to trust doctors 😒. I too have gait and balance issues in addition to OI. Who knows... I also have sensation issues with the right side of my body that appear to be positional so I’m assuming that is definitely caused by neck/back issues. My 82 year old grandma has the same issues and is getting surgery next month. She gets dizzy on standing and has horrible tingling in her right hand.
  8. Hi. I have no advice but I can empathize. I have to move constantly. Unfortunately since I can't be upright for more than a minute or 2 this means I have to rock in my chair or move my legs. I'm also not on meds (was prescribed a beta-blocker and then told not to take it by the nurse because of my low resting pulse). I don't find that water or salt helps me in any way. With covid I think I have become even more deconditioned than before as I don't leave the house or force myself to do anything and it's really affecting me, but then starting to move and be up more seems harder and harder the longer I'm down. I can't even shower standing up these past few weeks and starting to feel really depressed that I'm never going to get better. I'm in a near constant state of panic lately and would welcome any time I could spend relaxed but I just can't seem to get there. I hope this passes quickly for you!
  9. And that was a neurologist who said that! So I did some googling and there’s a few studies that show improvement or recovery after surgery.
  10. Mine I think is C6-C7 at the really bad spot. I was told I would likely need the surgery regardless. The surgery terrifies me but if I could get rid of POTS I would be forever grateful. I have had fairly extensive testing for potential causes of my POTS and nothing has been found, nor even any co-conditions. So this could really be something!
  11. Does anyone have stenosis and has anyone had the surgery to correct it? I was just diagnosed with severe compression in my neck which is causing me odd sensations in my arms and leg on one side. I’m going for further testing and then will be meeting with a neuro surgeon to discuss potential surgery. I asked if this could be the cause of my POTS and the answer was “no POTS is a heart condition” 😒 After doing some research I see this actually can correct POTS in some people.
  12. I looked this up and there is one very close to me! I'm going to give it a try I think. A reduction in symptoms would be so welcome right now.
  13. Yes I can do that but I like to take it standing sometimes to see what it does. It used to drop but I think it goes high now. I know for sure that my pulse pressure narrows when I’m upright.
  14. That’s interesting. I’m going to start taking readings again. It’s so hard for me to even stand still for a BP reading 😢.
  15. I was diagnosed with POTS in 2016 as well as Benign Hypermobility Syndrome. I've been wondering if I may have HyperPots. I am always on edge (could very well be anxiety) and had a few situations recently where my BP increased on standing and sitting. Normally my BP is about 100/70. When I stand my diastolic BP rises whether my systolic does or not. I did have catcholamine testing done at the time, but I only see one result on my chart. I don't remember if I was laying, sitting, or standing for that test. Can someone's POTS type change? Happy to share my test results if anyone can give input. Thanks!
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