Jean Posted June 1, 2017 Report Share Posted June 1, 2017 Hi Everyone, I just joined the group. I have been riding the Physician go around for four years. First, was diagnosed with Vestibular Migraines/Secondary Hydrops. My second opinion Neurologist did not believe I had migraines and could neither deny or validate the secondary hydrops diagnosis. I could not handle the medications that were given to me for the hydrops. They caused more fatigue and funny feelings in the head so..... I decided to clean up my eating habits. I gave up caffeine, most processed stuff, low salt for the hydrops, and tried to handle all of this. In the mean time life kept on going and much stress came my way. Also, a couple of years ago I noticed tingling feelings off and on in legs and feet. The heart papations were always there. I questioned if I really had any of the above diagnosis. Also, I knew I was in the throws of menopause as well. I had a partial hysterectomy in fall of 2013 due to Endometriosis and this is when I started to notice the heart palpations, and funny feelings in my ears begun. About a month ago, I was back in Houston dealing with financial things since my mom died, and I just could not handle the heat. My heart raced more than normal!!! My friend bought me a bp checker and long behold, I realized that my bp were lower than I thought. Readings would be 95/65, 100/60, 100/73. Also, my heart raced higher when standing and bp drop and come back up!! This got me wondering if this has been happening all along!!!! Also, I have noticed that I have always been sensitive to cold, but know I can't handle heat. All of these things are autonomic issues. I came back to Portland and tried to get in to see a Cardiologist. He did not consider my bp readings an emergency. Finally, I saw him yesterday. He believes I have an autonmic issue, but said I can't help you. He suggested I get on a forum and try to find a doctor this way. Also he said that there were not POTS physicians in Portland, OR. The insurance issue also has me scared out of my mind because I have to stay within my network or pay out of network prices, which I can't afford. I have not been able to hold down a job for the last years!!!! Thank you for listening and any advice is greatly appreciated!!!!! Jean:))) Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 1, 2017 Report Share Posted June 1, 2017 Hi Jean! I hear you about misdiagnoses and a long time to sort it out! I didn't notice the tachycardia until this year, I've been misdiagnosed and struggling for 13 years! I was reading online about every possible cause for fatigue and every differential diagnosis for all of those and rare diseases to perk me up when I felt sorry for myself. I came across POTS, stood up and checked my heartrate and WOW! I have preliminary POTS diagnosis from PCP, confirmed by neurologist, underlying neurological disease ruled out and now waiting for an appointment with cardiology for a tilt table test. After the mess of misdiagnosis, I made big headway by collecting data at home, organizing it and presenting to my PCP. I bought a used fitbit with heart rate monitor so I could print graphs of my heartrate. I started messing around and seeing what reactions I get. What happens if I.....??? Your blood pressures sound great to me (layperson). But if they're dropping significantly when you stand, then you might end up with orthostatic hypotension diagnosis rather than POTS. Depends on what pattern of heart rate and blood pressure shows up on a tilt table test. I think you're on the right track for ruling out diet, caffiene, etc. I did that too and it REALLY paid off at my neurology appointment. He was starting to suggest deconditioning, but I have step count data from fitbit and it's definitely not sedentary (except on particularly symptomatic days). I had to address sleep in a pretty major way. And nutrition - I used USDA SuperTracker to make sure I was hitting my macros and micros. I took iron since my diet is deficient, bloodwork to rule out anemia. I looked up all the differential diagnosis for POTS and did whatever I could to rule out the easy ones - anorexia, dehydration, poor sleep, stress, anxiety, etc. They were actually tough to rule out because my misdiagnoses include eating disorder, panic disorder and anxiety NOS. But whatever. It gave me something productive to do while waiting for appointments. You may not need a POTS specialist if you can find a doctor who is flexible. My neurologist hadn't treated POTS but he could confirm diagnosis and rule out neuropathy. My sister in law is a board certified pathologist, graduated from Mayo, and we chatted about POTS over the recent holiday. She remembers it from medical school. It IS being taught. Younger doctors (at least those from Mayo medical school) are aware of the physiology and treatment for POTS. My neurologist called POTS "a disease without a home." I'm sorry that you're having a hard time finding a care provider. (((Hugs))). I found a blog a while back about prepping for doctor appointments for dysautonomia. We're not supposed to post links here, but that should be enough info to find it on google. It helped me A LOT! I gave my PCP a letter that covered everything so he wouldn't have to rely on memory to write my chart. Cost me extra for "office output", but a small price to pay for narrowing down to an accurate diagnosis. Quote Link to comment Share on other sites More sharing options...
Jean Posted June 2, 2017 Author Report Share Posted June 2, 2017 Hi BUFFROCKCHICK, Thank you for writing to me. I am glad your Neurologist confirmed your POTS diagnosis!!!! It sounds like you have been through a lot!!!!! It just blows me away that so many doctors treat people like this is all about anxiety and in your head!!! Unfortuanetly I had that experience today. I went to a new Neurologist and I was trying to rule out certain Neurological disorders, like MS and Parkinsons. The Neurologist treated me with disregard. He did not seem to think my family history of my mom, aunt, and uncle having Parkinsons was important. He also made the remark that there is nothing you can do for Parkinsons anyway..... I had an MRI four years ago and it was benign. He held to the argument that this was the gold standard test for MS. He gave me a Neurological exam, however did not address any of my complaints regarding my feet are legs tingling. When I mentioned that my Cardiologist thought I my have POTS, he did not argue. However, he concurred that there were no doctors that did the Tilt Table Test for POTS in Portland. He did not see anything in his Neurological exam and basically said there was nothing he could help me with. My guess is he believes this is all anxiety!!!!!! I spoke to a case manager with my insurance company. She is looking into trying to find me someone that work with POTS in Portland........ I am becoming more and more fatigued and more symptomatic. It sounds like you know the feeling. I think that I need to get that fitbit. Do you have a certain brand you used?????? My step kids are coming for the weekend and they just don't understand what is wrong with me. I feel so guilty that I can't do anything with them. I used to always cook them meals and I barely can do that. Standing makes me very symtomatic!!!!!! I look forward to hearing about your progress and your upcoming Tilt Table Test!!!!! Hugs to you as well:))))) Jean Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 2, 2017 Report Share Posted June 2, 2017 I bet you can cook (without standing)! Cooking is difficult for me, but when I'm determined, I can get it done. I've sat on the floor with a cutting board and chopped veggies on the floor. I've started prepping food in the evening when I'm feeling better. There are casseroles that can sit overnight in the fridge, meat can be marinaded, crockpots can be packed in advance. Just about anything can be made in a crockpot! I make marinara sauce in a crockpot now so I don't have to be standing up to stir it occasionally. If you're doing especially poorly, plug the crockpot someplace where you can set it on the floor. You can do plenty without standing, no reason to feel guilty! Sometimes it's lying down in front of the TV for movies and popcorn, but you can do things with them. Board games on the floor? You'll think of something! (((Hug))) Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 2, 2017 Report Share Posted June 2, 2017 Do you legs tingle only when standing? Blood pooling can feel like itching or tingling. Might be how you're feeling the sensation without having neurological disease. I'm sorry you feel blown off, but no neurological condition is GOOD NEWS! POTS is unsettling, uncomfortable, and limits activity, but at least it's not life-threatening or life-shortening like the cardio and neuro conditions that your doctors have ruled out! Are you willing to try exercise? It helps! There are online resources and exercise programs for POTS, but the general idea is to start within your abilities, choose horizontal or seated exercise, and don't overdo it because that can increase symptoms the following days. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted June 3, 2017 Report Share Posted June 3, 2017 Hi, Jean! Welcome to DINET! Are you still in Texas, or do you travel there? I saw you mentioned you've been riding the doctor merry go round - One of DINET's Medical Advisors, Dr. Amer Suleman, is a dysautonomia/POTS specialist. He's in Fort Worth & Dallas at his practice, the heartbeat clinic. He's very thorough, knowledgeable and compassionate. You can find his info through the about us/advisors page. Here is a doctor on our physicians list in Portland, OR - http://www.dinet.org/physicians/?advanced_search_submitted=1&csrfKey=c41b401789922a279280f40a9c47fe3f&content_field_7=&content_field_5=&&content_field_17=&content_field_1000=&content_field_1001[1]=Oregon&&sortby=primary_id_field&sortdirection=asc&record_type=all&time_frame=show_all Take care! Sarah Quote Link to comment Share on other sites More sharing options...
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