Always hoping

I just wanted to take a minute to thank everyone who is on this forum and all of the administrators that keep it going. You have all given me more knowledge and comfort about this crazy thing called POTS than I could have ever received anywhere else. Whenever I get in a downward spiral (like the last few weeks), I can come onto this site and be reassured that I am not alone, that carrying a phone around in case I need to call 911 isn't crazy (at least not entirely! Lol) and that things WILL start to look up again soon. While I am terribly sorry for your struggles, I am eternally grateful for your existence! Be well!

Thanks for the info! Due to one of the posts on this forum that talked about this, I found out that my local hospital has one if the 5 machines in PA needed for this test. I brought the info to my primary MD (who is learning lots of new things about POTS with me!) and we got it scheduled. I will have to talk to her about this second test too. Thank you all! I've learned more here with all of you than from any doctor. My primary MD thanks you too ... I often start a sentence to her with - "I saw in the DINET forum..." Lol

Thanks Angelloz!

Has anyone had the whole blood volume test completed? I'm curious to know what the test entails. I only know that it is a nuclear medicine test and they said I would be there for about an hour and a 1/2. I guess my concern is that there will be multiple tubes of blood taken over this period and then I will have even less in me.... And then see the floor! Lol If approved by my insurance, I have it scheduled for February 24th. Thanks!

Your not alone! The 4 years that I was really ill I never even noticed that my HR was high. Perfect BP also. It wasn't until I found that POTS matched so many of my symptoms that I even checked my HR. Up 40 when standing and then I saw high numbers in the heat or with activity. For those years I really thought it was a GI issue since the majority of my symptoms during all my "episodes" seemed to focus on my stomach.

Hello all! I actually had an appointment with Dr. Goodkin last July. They called 2 days before and said he was canceling all appointments indefinitely. I don't know what happened or if he is still practicing. If he is, he was highly recommended. Trisha

Hi Bethany. I have seen doctors in both Allentown and Philadelphia that are familiar with this disorder. Let me know if you would like their information. Be well. Trisha

Hello Sideofsalt. I have my first one since diagnosis scheduled for next month and had the same concerns. Since my GI doctor has never heard of POTS, I have already requested the extra IV bag. They can re-hydrate me quicker than I can drink! I'm not scheduled until noon for the procedure, so I also asked about what I could do that day for sodium. While you should definitely confirm with your doctor, I was told that I could sip on broth throughout the morning. I'm guessing I am going to need it after the prep the night before. Katybug's comment about the sedation is a great point! The twilight drugs they give for this procedure could very well calm the nerves. Good luck and take care.

Thanks everyone!

Funny Merlin! Since it took 4 years to figure out POTS, I'm sure many of my doctors wanted to ask me that same question with all the crazy symptoms I was telling them. Katybug - One of the things that the doctors ruled out on me was "optical migraines". It may be that your pupil response is related to your migraines. Sorry that you have them. It is normally my left pupil that gets small and the right gets big, but it has happened the opposite also. It's very strange. The first time it happened, you couldn't see the black in my left eye (the pupil was so small) or any of the color in my right (only the black of my pupil). Freaky! When it happens now it isn't as severe of a difference. Still freaky, just not as much. It makes sense that it's an involuntary reaction, but none of the doctors seem to think it a POTS symptom.

With all the crazy POTS symptoms, there is one symptom I have that no one has been able to explain yet. I'm hoping one of you experts can! About a year after getting sick, my eyes started to dilate differently. One pupil gets very big and the other gets very small. If happens sporadically, lasts about 40 minutes and only occurs in the evenings. It was diagnosed as "benign blah, blah, blah aniscoria". (After the benign part I was happy so I don't remember the rest. LOL). Does anyone else have this happen to them or do you think it is unrelated to POTS? Just curious. Thanks!

Since we are sharing, LOL, I take mine sitting in the tub with the door and shower curtain open. Less steam in the room definitely helps. I also take my showers at night before I go to bed, this way I'm going to be laying down for a while after. They do say standing in the cold water at the end of of shower helps, but I just can't do it! Someone else had mentioned just running your arms under cold water after you are done.

I'm sorry you are feeling so bad Sleepy lady and I hope you find some relief soon.

Hello Everyone. I have an appointment this Thursday in Philadelphia for a second opinion on my POTS diagnosis. While I had finally found an Electrophysiologist in my area that had heard of POTS and diagnosed me, he also mentioned that he didn't believe fatigue was a symptom of POTS and a few other things that made me believe he wasn't that familiar with the syndrome. Before I started any of the meds he wanted to prescribe, I thought I should see someone else. Lol My question is this - since it is a long trip and I won't be able to see this doctor often, what do you believe are the most important topics to discuss in the time that I will have? How important is it to determine the cause (if possible) prior to starting any meds? And if I start any medications, what is the best way to establish discussions with this doctor about any side effects/ problems? I'm hoping to get all the problems of the world resolved in a single visit . Any experiences or input you may have to prepare me for this visit would be greatly appreciated! Thank you.

A cardiologist had prescribed 25mg Toprol for palpitations that I had constantly. I took 12.5mg once a day for about 2 months. The palpitations were gone and it did lower my HR by about 20 points (still over 100 but lower). I can't say I felt better (besides the relief of no palpitations - thankfully) though because it also lowered my BP to around 80/50. So I assume the fatigue at that point was from a low BP (normal for me is 110/70). The Electrophysiologist that took me off the meds did tell me to wean off of them even though it was such a low dose. I think for me it was so that the palpitations didn't come back, but I'm unsure.

Mine was a little of both. My GI doctor told me for years that I just had a "nervous stomach" and thought I was a bit crazy with all my other symptoms. My GP and I made a plan about 10 months ago and I started logging everything I ate or drank to find some type of correlation to my symptoms. After several months, there were still none. She then began to run some of the common tests for other things and I hit the Internet. I started looking for my symptoms that i thought weren't stomach related. After many things I knew it wasn't, POTS popped up. Reading it was like reading my life! I took my pulse while I was laying there reading and then stood up and took it. 40 point increase right away. I had never thought that my heart rate was "off" before that. Next time I went to see my GP I told her - "I'm a doctors worse nightmare, a patient with printouts from the Internet". Thankfully she is an advocate for me and said "let's hear it". She had never heard of it and still is not that familiar with it, but she has been in my corner helping me get to the right doctors. Heading to University of Pennsylvania is two weeks to get a second opinion that it is POTS. You will always be the most knowledgeable person in the room about what is going on in your body! Don't back down. Good luck!

Loved your post Kay! Thank you for those words of wisdom!

Hello Srb. I understand so much of your post. You are not alone! I had some major stress factors and then became very ill 4 years ago with EBV. A year later, an angel came my way and I adopted my daughter. I spent 5 weeks several hundred miles away from home to be there for her birth. While it was the most amazing thing in my life, it also brought on a significant relapse. I adopted as a single Mom, so since then it has been her and I! I do have the benefit of my mother who watches my daughter while I work, but I have very limited additional resources. I completely understand your feeling of abandonment. There are many others who could be helping, but I don't believe they truly understand what it takes for us to even get out of bed at times. It has been very scary, but as you said - you do what you have to regardless of how you feel. I have just recently been diagnosed with POTS, so at this point I at least feel as if I have "path" to go on versus the last 4 years of having no idea what was going on. I wish I had some words of wisdom for you, but I don't. I can only tell you that you are not alone and that we will find a way through this!

Hello Newoldpotsie. I'm sorry you are feeling so poorly. I would agree with drinking the boost or ensure. They are small quantities so easy to "get down" and have a lot of carbs. They also have some of the nutrients you need and are easy to just pull out of the refrigerator when you don't have the energy to do much more. Hope you are feeling better soon!

The cognitive issues hit too!! "Funny" how you can't remember your name one minute and then can write a scientific paper later! I work full time (luckily from home) doing financials.... sometime I can't remember how to add correctly!! Then later in the day, I'm back! And I agree, sometimes you can't help to think that there is something more dire than POTS going on. After reading how badly this syndrome has effected so many others, I have become thankful for the moments of clarity and physical abilities I do have - even the small moments between the craziness! You should talk to you doctor about this though, especially since it's a new symptom for you.

Hello Goschi. While I'm new to the POTS diagnosis, I have actually been sick for 4 years. One of the things that perplexed me the most was how at one point in the day I could be sitting holding the phone to possibly call an ambulance (feeling that bad and fearful for my toddlers safety) and then 3-4 hours later feeling well enough to be dragging in bags of groceries from the car! I am curious to see what other members of this forum have experienced and if this is a "normal" POTS problem. Best of luck to you!

Thank you Clb75. Many of my symptoms are stomach related, so the last thing I want to do is add anything that would increase them. I will absolutely try adding the salt to my Gatorade.

Hello! I finally got the POTS diagnosis and am starting the salt and fluid loading. I've never had a big appetite so I'm not sure I can get the required salt naturally from my foods. I'm planning on purchasing the salt tablets but was curious if there is any side effects to taking them - no desire to add any additional symptoms! Any advice is welcomed. Thank you!