Mikayla Posted October 23, 2018 Report Share Posted October 23, 2018 Hello, I have been waiting a few months to see a specialist about my frustrating symptoms. It seems my symptoms are not as extreme as many of you so i am wondering whether it is worth the travel, energy and mOney to see a specialist anyway. I have been confused by my symptoms for so many years when my doc said it was POTS i was so happy just to have a diagnosis. However, my doc is not a pots expert and she thinks pots is indicated by a jump of 20bpm upon standing. Mine jumps between 20 amd 40bpm usually from approx 55bpm to 83bpm (but always different).. Today was 60 resting to 88 standing 3mins. Most common is a jump of approx 25bpm. From what i read here it has to jump 30bpm to be pots? Mine does jump 30bpm and sometimes 50bpm but not very often. I do appreciate my doctor but it does seem hard to find any who have the time and knowledge to understand what may be causing my symptoms. Over the years doctors just have said its just depression, whereas i feel that i get depressed because i cant trust my energy levels or other symptoms so it becomes hard to engage or commit to life. I do feel dizzy, lightheaded but i have not fainted. My major issues are fatigue, foggy mind, memory problems, anxiety and depression. I have a history of eating disorderz and my diet is still a bit erratic/yoyo. But it is pretty healthy overall. I really cant afford to see a $300 specialist who just tells me i dont have pots afterall... But i am willing to pay if it will give me some clarity and avenues to treatment. So i am hoping someone here might tell me if my symptoms still fit a diagnosis. Sorry if this is a bit scattered. I am feeling foggy today but really need to feel like i am on the road to understanding what might be a cause and treatment for me. Do you think its worth continuing to wait and pay $300 to see a cardiologist who apparently specialises in Pots? Or does it sound like my symptoms are not severe enough for PoTs to be the underlying cause? Is it possible its still dysautonomia but not POTS? If its not obvious... I feel rather confused 😅 Thanks for reading ☺ Blessings 🌷 Quote Link to comment Share on other sites More sharing options...
joiedevivre Posted October 23, 2018 Report Share Posted October 23, 2018 Yes, you could have POTS if your hr jumped less than 30 beats just testing at home or at the doctor's office. Mine would jump only 20-30 beats at home but when I went to get my tilt table test and they gave me nitroglycerin it went from less than a hundred to 160 beats a minute. I also never faint but my symptoms are very severe and I'm home bound at least half the time. Though I will say that by the time it got really bad it was obvious to me that I had extreme problems standing ( before I knew of POTS), but earlier on when my symptoms were just starting 9 or 10 years ago, it just felt like "fatigue ". I didn't link it to standing though I should have. I thought I was tired when I was standing because standing takes energy. Then I would tell doctors how I was exhausted and couldn't do anything and they just ignored me and sent me away. Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 23, 2018 Report Share Posted October 23, 2018 Dear @Mikayla - yes, it definitely is worth all the money in the world to see a specialist. I have a wonderful PCP and cardiologist who were both extremely supportive and helpful in recognizing my POTS but neither knew how to treat it. I saw several other cardiologists over the years who all had their "opinions" about POTS - and did a lot of damage. So - when I (after a 12 month waiting period) finally got in to see my specialist it was such a relief to talk to someone who understands all of my symptoms. And over the years he has tried many meds and works with my PCP and cardiologist when they need to be adjusted, plus I can message anytime with a question. At the time I had to see him for the initial appointment my insurance did not cover out-of-state docs so I had to pay, but they gave me a lesser fee due to having no insurance. I used to go at least once a year to see him and now I only go every three years or prn. And he is 8 hours away from where I live - it is usually a three-day event for us. So - YES!!! I would make an appointment very soon with an autonomic specialist. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 23, 2018 Report Share Posted October 23, 2018 I would say it would be worth it. When I was collecting data to show my doctor I only averaged a jump of 25, but on my TTT it showed over 130 for the full 45 minutes. My average laying down was 80 at the time. Even if the cardiologist says you don't have POTS (after doing the correct testing) then you have an answer. Either way it is an answer to finding out what is wrong. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 23, 2018 Report Share Posted October 23, 2018 If you have a 30-50 bpm sometimes it sounds like POTS. If you are going to see a specialist it might not just be one appointment - it would be multiple appointments and testing to get better. If you can get it covered under insurance that would be the best/easiest thing. You can try reading a lot of information on the forum about the different doctors and treatments - and eventhings you can do at home to feel better. Quote Link to comment Share on other sites More sharing options...
Mikayla Posted October 24, 2018 Author Report Share Posted October 24, 2018 Thanks everyone, I really appreciate you taking the time to share your perspective. True, it will be great to talk to someone who can bring some clarity either way. I talked to my doctor today.. I am not sure this cardiologist is actually a specialist but he is apparently the only person my doctor knows of that has AnY knowledge of Pots. So i will give it a go... I certainly need to do something! I am also waiting to see a neurologist through the public system in the city. But that seems like it will be several months on waiting list. Ahhh so many good lessons in patience, acceptance and perseverance. Much admiration and compassion to all of you dealing with these symptoms. Blessings xX Quote Link to comment Share on other sites More sharing options...
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