StayAtHomeMom

I would send him a message. Also make sure you pharmacy checks for interactions. My mom's pharmacy missed one on hers. Mild issue but no one told her the interaction. Not even the doctor. I am glad you have found some answers. Beta-blockers are good for the tachycardia and arrhythmia. They don't help with much more. I can still have symptoms with a normal HR. They way I understand fludocortisone is it helps you to retain water and that would help your blood volume. I have seen a lot of people on here at least try it. I never have. My specialist put me on midodrine to go with my Beta-blocker. Good luck.

I had to wait 6 months to start seeing my neurologist. It was well worth it. He is the only specialist for POTS in my state and he knows what is going on. Not just dismissing me like I just have an anxiety problem. He ended up reordering all of my tests, including TTT. Then had me do a brain MRI anyway to rule out MS because of my symptoms. Sometimes it takes a while to get in to see a good doctor but that good doctor can mean so much for your health. Have you done or had a poor man's tilt table done? I had issues with doctors believing my symptoms were an issue. So I did a poor man's every day for a month to show my doctor. When I showed my PCP she sent me to a second opinion cardiologist. When I showed him he scheduled my TTT and that got me my diagnosis. It took about 3 months to get that done, but I finally have my answer. All I can suggest would be to call every so often about cancelations. Maybe they can get you in sooner. Also sometimes I can get a better date and time than what my doctor's office set up. I remember feeling the doom and gloom before my diagnosis. I got better and I am sure you will too.

Melatonin is my go to when my insomnia gets bad. Hot showers before bed can help me too. It raises my heart rate and when I get out I am exhausted and just want to sleep. Every night I listen to an audio book and that helps me sleep. Generally it is Harry Potter read by Jim Dale. His voice is deep, British, and soothing to me. I usually fall asleep before a disc is finished and if I wake up I will replay it to fall back asleep. I know this is a weird suggestion. Considering everything you have tried, have you tried a stimulant to help you sleep? Our bodies can react weird and maybe having caffeine may make your body react the opposite way. I had a sleep study done right before my POTS was diagnosed. Everything was "normal". I did notice my REM sleep was only about 15 minutes during 6 hours. I suspect that's why I sleep 10-12 hours a night and still feel tired. Good luck with your specialist and I hope others may have some suggestions for you.

What about just the laughing gas? My friend uses that due to a childhood trauma and she says it makes it a lot better for her.

Have you tried a small dentist's office? My dentist office has one dentist and 2 assistants. I have never noticed any smells from the smaller office setting. Also try talking to your dentist about what is troubling you. I have super sensitive teeth so mine extra drugs me and cover the teeth around the ones she is working on with gauze so the air from the drill doesn't bother me. Since my POTS diagnosis she now does non epinephrine numbing so it doesn't freak out my heart rate.

My TTT has no medication. But as soon as they tilted me up I was over 130 and stayed there for the 45 minutes til the laid me back down. It was exhausting but otherwise ok. My BP doesn't usually change much. It dropped during my second TTT after they laid me down and wanted me to rest before I tried to stand up. But during my day to day I think I do OK. I don't check my BP much. I have never fainted. In the beginning I would lose my eyesight like I was going to faint but I never actually did. For me instead of fainting it is more extreme exhaustion. Like it to too much to blink and breathe. It sounds kind of scary but I don't get it much anymore and I try to keep someone around if I am doing something that I think may trigger it. Like showering or manual labor things.

Do your research before you see the endo. There are 2 or 3 tests that check for hashi's. They usually only test the one. I hope your appt goes well

Have you been tested for Hashi's? I remember during my research hashi's can cause hyperthyroid and hypothyroid symptoms. It can be kind of crazy. Something you said triggered something in my memory just not sure what.

Dysautonomia international if I remember. How much do you take a day? And what other meds do you take?

Hypothyroid or Hashi's?

I noticed someone mentioned yesterday they take Saltstick vitassium. I did some basic research and it seems wonderful. Has anyone tried it, and what was your experience with it. I plan on getting with a few of my doctors this week and see if it is OK for me to try. It is a little pricey. But with my husband's health issues we are having to change things up with low sodium diet at home. I figure this is perfect for upping my salt. And with the cramping I get especially during my menstrual cycle I think my potassium is a little low anyway. Thanks in advance for any comments.

I was diagnosised with POTS. I did a TTT twice and both showed it. My BP and HR don't drop. My BP is usually pretty steady and normal. My HR shoots up. Without meds I average 80 laying, high 90s sitting, and 120 standing. I don't know the exact numbers on my second TTT but on my first one my HR stayed above 130 the whole 45 minutes. And no passing out either. Some people with POTS can have fluctuations with BP but fluctuations in BP doesn't rule out POTS. Square/rectangle sort of thing. It does seem like your doctor's are at least listening to you somewhat. And that is always a good thing. I hope they find out what is going on soon.

I meant dramimine, the motion sickness medication.

My pulmonologist recommended a half a pill of over the counter dramimine to help my dizziness. Not sure why it helped but it did at that time. Check and see if it is safe for you to try. I am sure you are at the point where anything is worth trying. I live in the US and even here POTS isn't well known. I had to fight every step of the way to get my diagnosis. Even now when I meet a new doctor or nurse they will ask what it is. When my POTS presented it started with a breathing issue (still have 3 years later) and doctors kept saying it was asthma. With perfect PFTs they kept giving me inhalers and breathing treatments. They all made me feel worse. I know now why but at the time I didn't realize it was causing my HR to be worse. Things will get better, especially when you find that one doctor. It took me over a year but I found mine and am now doing a lot better. Even with my flares, I am still better than I was 3 years ago. If you don't agree with your doctor, find a new one. They work for you, not the other way around. Good luck and I hope you feel better soon.

Has your thyroid been checked?

I have issues similar lately in the evenings. I will be laying on my couch playing a video game and my heart with thump loudly. It is kind of an uncomfortable sensation. I will get up and move around. Such as grab something from the kitchen or go to the bathroom and lay back down. It will settle down for a bit then start back up. It is weird but I assume it is just adrenaline surges from my video game and I just take my metoperlol when it drives me crazy and it usually goes away. It have been going on for about a week. Hopefully it is a symptom that will cycle through and not come back for a while. Good news, it reminds me to take my evening dose of my metoperlol

Propranolol did not work for me as well as my metoprolol does. But it is still a Beta blocker. It is supposed to be better for POTS and can be used as an anti-anxiety medication at low doses. It only stays in your system for a few hours at a time. Personally it effected my breathing (which is my number one symptom) so I was switched to my metoperlol.

I would take the metoprolol. That is my go to med for tachycardia and heart palpitations. It was the first medication that really helped me. 10mg is a small dose so I wouldn't worry too much. I take 25mg twice a day. My dad was taking over 100mg a day for his A-Fib. I have the same issues about sleeping on my side. Sometimes I can sleep on my left sometimes I have to sleep on my right. I just kind of go with whatever helps me to go to sleep. A consistent sleep schedule can do wonders. I wouldn't worry about the eating thing unless you are losing weight. I barely eat once a day now. I just started eating when I was actually hungry. My PCP isn't worried and my weight is steady. Congrats on homeschooling. I homeschool my 2 boys as well. Personally I think it is a much easier thing to do. What curriculum do you use? I use an online based one and my boys are old enough that they can go through it mostly on their own with me just answering questions and grading. That is helpful for when I am not feeling well. 20bpm may or may not get you the diagnosis. Depends on the doctor and I have notice my standing HR and my upright HR on my tilt table test were different. I stayed above 130 for the 45 minutes for my TTT but I was averaging 120 while standing. Diagnosing POTS is change of 30 bpm or more OR sustained HR of 120. So a lot can depend on your numbers and doctor. I remember when it was all new and scary for me as well. It gets better. Once you get your diagnosis and start to understand what is going on it gets easier. And my boys are very understanding of my limitations.

I am not sure what I did to help me be upright more. it was over 2 years ago. Honestly I think my biggest motivator was I wanted a cigarette but refused to smoke in the house. I just wanted to post a quick message of encouragement. Do little by little, try to push but not too hard, and before you know it the lightheadedness and headaches should happen less frequently. Good luck and I hope you get some good suggestions.

My husband has gone through something similar. Not menopause but he has blood pressure issues. If it goes over 180/110 take again after 10 minutes and if it doesn't go down go to the ER. Honestly all you can do is wait til the doctor can see you. They will probably give you meds to get it down. And then runs some tests to find out why. High blood pressure can cause stroke and/or heart attack. I don't mean to scare you, if I am I am sorry. I am one of those people that the more information I have the calmer I am. For now try to relax, stay away from caffeine, and see your doctor. Women have unusual signs for heart attacks so make sure you know what those are and if you think you need to be seen now try calling the "ask a nurse" hotline some insurances have. They can advise as well. Has your high blood pressure only been today?

Have they tested you for Inappropriate sinus tachycardia? My internist suspected that before my POTS. It sounds like you definitely need a cardiologist referral.

I can imagine how much better you feel. A few years ago I went straight e-cigarette and I could feel the difference just from that. Congratulations on quitting.

The red wine was what I was told is specific to helping blood volume. Not sure on the other alcohols.

I know that feeling, I don't drink much (maybe once a year) and food makes me sick sometimes so I wish I could just quit. I realized I was addicted when I was 16 (was pregnant and tried to quit) I realized I didn't want to quit a few years later so I don't try. My mom finally quit 12 years ago when my youngest was born. She has quit a few times in her life but finally managed it. I know it can be very hard. My aunt and sister in law both tried Chantix and it helped them tremendously to quit. Might be worth checking out if you really want to quit. Good luck.

Have you tried the medication Chantix to help you quit? It has helped a few people I know. Personally I don't have the will to quit. So I don't try. I applaud you though. I know it can be hard but I am sure you can do it