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RobinB

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  1. @Nin I think you need a specific type of scan for that. I am going to look into it when I recover from my surgery assuming I get no relief. I’ve been very conservative with treatments to avoid feeling worse, but I have no life and need to find something to help at some point. I don’t think I have SCD as I only have some of the symptoms.
  2. @WinnieBlue I just recently learned of a condition which can cause these issues we have with balance and things feeling like they are moving etc. It’s called Superior Canal Dehiscence. I was recently diagnosed with eagle syndrome for which I just had a surgery in a desperate attempt to cure my POTS and in my research I also discovered SCD. It’s worth looking into.
  3. @p8d what kind of doctor does the physical therapy with you?
  4. I have that same rocking sensation. I genuinely feel like I'm off balance, however I have tested myself by standing with my eyes closed and I don't follow over lol so it must be more of a perception thing. I've also passed the neuro tests. Mine feels more like I'm on a boat but I definitely thinks it's ear or eye related. And I feel the same way with patterns. I can't handle patterned carpet or tile floor. Even striped shirts bother me. If you get an answer on why this is please share! Stores bother me too, but I attribute that to the fluorescent lights and insane amount of stimuli which I struggle to process. I'm actually planning on running to Walgreens tonight for a few things and my anxiety is already taking over. The whole ordeal is so draining. I can't stand in line so I have to go late when it's less crowded.
  5. I took Zoloft before I was diagnosed as they thought I had anxiety. It gave me really bad vertigo. I am also one who is afraid to try any more meds because of the side effects. I am however going to inquire about Lexapro as I have read a lot of positive things about that one. I also just want to thank you for advocating for your wife and reaching out to find support and help for her. This disease is so horrible to live with and a lot of us spend too much energy trying to be heard/understood/believed. She is very lucky to have you in her corner and I have faith that the two of you will find something to help! Keep going, don't ever give up.
  6. Hi. I'm so sorry that you have a reason to be here. We can all empathize with how bad you are feeling. It's very hard when this disorder turns your life upside down. I've had this for 9 years and it is terrifying still. I did have a period of about 3-4 years where I got a little better. I was able to do most things I needed to do and some of what I wanted to do. However this year I have fallen back worse than before. I'm not saying this to scare you, but just to let you know that it can get better over time. As hard as it is, try your best to move a little each day. I get symptoms within seconds of standing up so I completely understand the struggle just to make it to the bathroom. However, if I succumb and stay down for hours on end it will most surely make it that much worse. I try to stand up for 1 minute every 20 minutes or so. I just stand right next to my recliner so if I need to I can quickly sit. I do allow myself to rock from leg to leg if needed but I don't sit down until my 1 minute is up. I allowed myself to get fully deconditioned while on this quarantine and it has made my POTS 100x worse. I am also not medicated. Can't take beta blockers because my resting pulse is now 45-55. It's good that your cardiologist is looking for a cause! But I suggest trying to see a specialist if possible. Cardiologists and neurologists from my experience only focus on a small part of it and tend to throw meds at you without really checking first. I was prescribed this beta blocker via a video appointment and there was no testing done prior. It's all very scary, you have to advocate for yourself. Know your numbers so you can take charge of your health with the help of the doctors if needed. Be patient because it can take a long time to get the help you need. I find that most doctors don't understand how truly awful POTS is. They think it's just a minor annoyance which leads to us not being taken seriously. I often wish I could switch bodies with my doctors for even 5 minutes. They would be begging to switch back!
  7. @p8d I’m reading up on the CellTrend test. How did you manage to get those tests done? I’m very interested in doing that however I’m not sure how to go about it. Do I ask my doctor?
  8. Mine has flipped, but the other way. When I was first diagnosed it went from normal to 70/40 standing for 10 minutes. Longest 10 minutes of my life! Now mine stays pretty consistent (although I often can’t stand long enough to test it) with just the diastolic rising a bit and making my pulse pressure narrow. It feels just as awful either way. I haven’t seen a specialist since 2016 so I’m hoping that I can soon... to see if there are any notable changes that might lead us in the right direction. Hang in there! I know symptoms for me can change from minute to minute. Sometimes a HR of 115 feels awful and 140 feels bearable. It’s so confusing.
  9. @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.
  10. I don’t know if it’s normal with POTS but I have it too.
  11. @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.
  12. @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.
  13. 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.
  14. 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.
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