Always hoping

Thanks Katyroq. Some days it's harder than others to hold onto that thought, but I try as much as I can. We really do learn to appreciate the "good" things so much more when dealing with this crazy thing! Be well.

I promise that it gets better. Please don't give up. Now that you know what the problem is you can begin to find your way back. I won't lie and tell you it's easy, but you will begin to manage or overcome your symptoms. This forum is a great place to research and ask questions. Just knowing you aren't alone, the significant amount of information and help you will find here will be a great start. Everyone is different when it comes to what triggers symptoms and what helps. Read through everything and take from it what you think will help you. There is a listing of physicians where you can see what doctors are in your area. I would recommend making an appointment with an electrophysicolgist (cardiologist specializing in rhythms). Many people find help with neurologists also. Yes, there are doctors that care and will listen. The challenge is to keep looking until you find the right one for you. Hopefully some of the anxiety will begin to subside as you get some of the symptoms under control or as you begin to understand what is actually happening. I'm available any time you need to chat. Be well. Trisha

I believe potassium is included in a regular CBC blood test which is very common, so I would think it would be covered. Best to call your insurance company to be sure though. Hope you feel better soon!

I'm sorry that you are dealing with this. While different symptoms, I tend to have sudden flares. While I am lucky enough to be able to function in a somewhat normal manner, my symptoms can come and go suddenly. When one comes on it can last 5 minutes to all day. Laying down when it starts definitely helps it pass quicker. Sometimes I'm terrible and an hour later I can feel fine. It makes scheduling life difficult! When in one of these flares, I do get the urge to urinate. Which of course getting up to use the bathroom is literally the last thing you want to do at that moment. I don't get the need to stretch but another weird one - I get extremely thirsty. I can usually tell when an episode is going away because the major thirst starts (like 8 bottles of water in an hour thirsty). I have no idea why either happens. I can't say its because I'm dehydrated since I can be completely hydrated when the episode begins. This is a crazy thing to live with. Good Luck and I hope that the episodes are few and far between.

I haven't heard of this but I will ask my EP about it at my appointment on Friday! Since I lack aldosterone (which Florinef is a replacement for), I've been given the impression that I am on it long term. I know my PCP was concerned originally about my being on it because it is a steroid, but then I was told that's it's not "that kind of steroid". Interesting.

I just did the 30 day holster last October. It's not too bad, just a bit annoying to maintain. It's worth the time and effort though. Good luck and congratulations!

I hope this is OK to post. I have seen mention of Dr. Boris on forum posts so I thought this may be of interest to some members. Copied from the Dysautonomia International website: Please join Dysautonomia International in co-signing this urgent letter to the CEO of Children's Hospital of Philadelphia requesting the immediate restoration of the hospital's successful POTS Program, which serves hundreds of children with POTS each year. Even if you've never been to CHOP, we're asking the entire dysautonomia community to speak up on behalf of the children with POTS who need this clinic to remain open. Feel free to provide additional comments in the text box provided on the form, especially if your family has benefitted from CHOP's POTS program. Your comments will be delivered to CHOP with all of the signatures received before Friday, March 9, 2018, Noon Eastern. Please share this post to help us gather as many signatures as possible before the deadline! Sign here: http://bit.ly/SaveCHOP.

I didn't have immediate positive effects from Florinef but I know it helped me a lot after a few weeks. I also wanted to mention that it can increase your blood sugar and decrease your potassium. I've been on it for several years (very low dosage of .05mg) and I haven't had issues with either, but my doctor does monitor those levels.

I'm sorry you are dealing with these medical issues Gail. While I have the diagnosis of POTS, I am "lucky" to be able to be on the moderate side of it (most days) and live life as you do. Full time working single mom who has many of the same symptoms and struggles. If we compared our issues, they would likely be very similar. I wouldn't discount your struggles or symptoms just because you don't have the same diagnosis and I don't believe most others on this site would either. I believe most people (POTS or not POTS) would help you with your questions and struggles since many of us are dealing with the same things. This forum has tons of valuable information. Take what information pertains to your symptoms and issues and help others with the same issues. My experience is that there is a wide range of symptoms with people and many would understand your struggles regardless of their official diagnosis. Be well.

I would discuss this with your doctor. They would know the best way to wean down. I'd be fearful that if I did it too quickly that it would cause me more problems. Good luck.

So I guessing you didn't have any of your 2 hour fainting episodes while there. Doesn't that always seems to be that way. I hope you get back to any of the doctors that you have been seeing and let them keep monitoring things. Be well.

I'm sorry that you are dealing with this. Have you taken your BP at the time this is happening? Could it be a quick rise or fall? I hope they clear up quickly.

I'm glad you are getting thoroughly looked at for this. Good luck and keep us posted.

I'm sorry that your friend is dealing with this. I have had almost exactly as you described several times over the years, but never on a nightly basis! I quite honestly have no idea if mine is anxiety or a POTS thing. For my occasionally episodes of this, I had a bottle of klonopin by the bed for years. When I woke up from this, I would take one and go back to sleep for the night. Since these meds didn't make me sleepy or "off" during waking hours, I have no idea why it helped at night but it did. It either calmed my anxiety or my nervous system which allowed me to sleep uninterrupted. She should discuss this with her doctor. Not getting sleep so often at night is just going to intensify her other symptoms. Be well.

That's a tough one and I'm sorry that you have to deal with any of this. I am a single mom of a 6 year old. I understand the guilt. I got sick before she was born, so our life to her is normal. I'm sure this will get harder as she gets older and I can't keep up with her friends and their families lives. I have no answer, but can only say to try to focus on the things you can do with your family. I'm sure they love you and the time they get to spend with you is what is important - not always where they spend it with you. Maybe start some types of family event that you can always participate in like a weekly game or movie night at home. Make it something fun with favorite foods or even a game to determine what food/snacks you'll all have that night or crazy desserts. Try to focus on the things you can do with them and make those times memorable. I wish that I knew the answer for this, but all we can give them is our love. Which based on your post, I can see you already do. Be well.

I hope it went well! Fingers crossed for you.

I understand. I figured it out on my own after 4 years of barely functioning and I still often feel as if I'm educating the doctors. Knowledge is power though and this site is an amazing resource. I can only recommend that you keep researching and educating your doctors if needed. If one doesn't have an open mind, find another. POTS effects everyone differently and everyone seems to have different things that help them. Tracking your good and bad days, symptoms and possible things that make your symptoms worse could be helpful. For me, finding out that my ferritin/iron and aldosterone were extremely low and manage those numbers have helped me immensely. I've also figured out many of the things that will trigger my symptoms and attempt to manage that also (heat, showers, large meals and exercise). Have faith that things will get better. I believe they will! Be well.

While no beta blockers or hyper pots, I have taken klonopin occasionally for adrenaline surges and found it helpful. I understand being anxious about taking meds since I react strangely to everything. The klonopin didn't affect me in any way but would 'calm' my system. Good luck!

Thanks Pistol. I can now tell my doctor that the high blood pressure isn't unusual! Be well.

Thank you for your replies. I'm sorry you have those high rates dancer65. Crazy to go from low to those numbers! Thank you for letting me know it does happen. Not that you ever want someone to suffer, but it is reassuring to know it has happened to others. I hope your bad days stay away. I've been on a low dose of the Florinef for 3 years to keep my BP up and until this point it had worked well. Today is my third day on half that dose and so far it hasn't dropped too much or gone high. Fingers crossed! Thanks Yogini. Over the years of reading, I have always felt that hyperadrenergic POTS linked the most to my symptoms but never had testing for it since my BP has always been low. I may have it checked after all. I also won't be surprised if I'm given a medication for arrithymia at my next appointment. While I always fight taking any drug (I'm only on the Florinef) I believe I will agree to this one if suggested. Thought for sure I was going to have a stroke with all that heart craziness. Our hearts might be a little "wacky" but thankfully they are strong! Thank you again for taking the time to reply. Be well.

Thanks MomtoGuiuliana. I'm going with this being a "change" to my POTS but the completely sudden change is insane. (Like POTS itself isn't! lol). I often get the skipped/extra heartbeats if any of my triggers start (hot, eating, not enough water, etc.). That's normally by body's way for telling me to do something. These were mostly what was happening for those 4 days straight ever time I stood, but there were also some really crazy rhythms going on. Flipping, flopping, pounding and skipping. That last episode before my BP went up was crazy. I don't think my heart knew what to do. Whatever it did, it seemed to have stopped the constant irregular heartbeat. Having my doctor tell me that Potsies BP don't go high and then try to put me on a med for high blood pressure (until I pointed out that maybe reducing my "low blood" pressure med would be better) didn't help me feel any more secure about what is going on. Thank you!

Thanks for replying. I have no idea and my doctors "have never heard of it". Doesn't mean it isn't possible. Be well.

Have any of her doctors done these orthostatic readings in their offices? Make them see these readings themselves. And tell your GP that you want her seen by an elecrophysciologist. They should be able to determine or rule out any orthostic issues. Good luck.

I take several supplements and probiotics with my Florinef. I would just run anything past your doctor. I do since you never know what interactions there are. Be well.

I feel like I'm back at that terrible place where you know something is wrong but all your tests are great. I'm scared. I have always had a normal BP prior to POTS and then a low BP after I got sick (which I figured out 4 years after it started). Salt, fluids iron infusions and Florinef has managed many of my symptoms for almost 3 years. With meds I now run around 115/75. Perfect. About 2 weeks ago I got an irregular heartbeat after dinner. Not that unusual for me for an hour or 2 after I eat. This time it didn't go away though until I laid down. For 4 days the irrational beats were going on whenever I stood or at some points when I sat. Sounded pretty Potsie to me since it was completely positional. Then on the 4th night I had an extra aggressive crazy episode of irregular heartbeats for about 2 minutes until I could lay down. At first the irregular heartbeats went right away. I just stayed on the couch to relax before I went upstairs to bed. Unfortunately my whole body started getting this "revving" feeling that wouldn't pass and an occasional crazy heart rhythm would quickly come and go. I just pounded my water and just tried to chill out while it passed. It didn't (and I had to pee! Lol) so I kinda crawled to the bathroom and grabbed my BP machine on the way back to the couch. When I took my BP it was 150/90. Figured that it couldn't be right (for me) so I waited a bit and took it a couple more times. Just kept going up. Finally broke down, woke my sister at 1 am to watch my kid and made the call for EMS. When they took my BP it was 190/100. Thankfully all ekgs and blood work were fine and my BP went back to normal within a few hours so I was back home by morning. I was just extra tired and had a headache for the next few days, but the irregular rhythms had finally completely gone away. 5 nights later it happened again. I have no idea how high since I was already upstairs and couldn't go down to get the machine. No crazy rhythms either thankfully. I could just feel the revving and my heart beat in every part of my body. It passed in a few hours and I went to sleep. The next day I ran about 150/90 throughout the day. Called my EP and they told me that they had no idea and have never heard of a Potsie with high BP (I know that isn't true). Agreed to my cutting my Florinef in half as of yesterday morning. So my problem now is that I have been going between high and low BPs since yesterday afternoon. Low 90s/low 70s (I've been much worse off meds) and then into the 150s/90s (never for me). I feel like a ping pong ball in a tournament! Has anyone every had their BP suddenly go so drastically high for no apparent reason? I'm just feeling as if my body is working up to some crazy crash. And I just thought that I figured out my "normal" and it all went out the window. Thank you for taking the time to read this. Trisha