hholmes13

Oh Bellamia I'm so sorry you're going through so much! I don't have much advice. I just wanted to let you know that you're in my thoughts and prayers. I hope you get some good news soon. Hugs, Heather

Thanks for your replies and sharing your stories! I'm sorry you have to deal with so much...and for such a long time! I try to be as active as I can. However, I have developed pretty bad exercise intolerance, so my I'm definitely not exercising like I used to. (I was training for a half marathon when this all started.) I try to do it whenever I feel up to it. potsgirl, thanks for the advice. My primary care is at Mayo in Rochester since I'm an employee there. My neurologist is one of the specialists in POTS and such. I do feel very fortunate that I don't have to travel to see a specialist. If anyone is coming to Rochester, you should let me know. It would be fun to meet some of you face to face.

Hi Everyone, So I'm a newbie with this stuff. I don't even have a totally definitive diagnosis. (Docs are calling it orthostatic intolerance but also flip-flopping back and forth on saying I have POTS. With the increasing amount of tachycardia problems I've been having...definitely leaning towards the POTS diagnosis.) I've only been dealing with this chronically for about 5 months now. I have always been prone to fainting and had more near-syncope episodes than I can count. It was just never an every day problem until this year. Anyway, I've read about so many of you that are severely affected by this and are no longer able to work/drive. My question is, how long did it take to get to that point? Did it come on really quickly or was it more of a slow progression? Did you have periods of improvement? I realize everyone's experience is different. My neuro doc had said he was optimistic (about 3 months ago) that I would return to normal no problem. He said it may take a few months, but he thought I'd be fine again. Well...not so much yet. I have my good days here and there, but at least 1-2 times a week I end up leaving work really early. Most other days are a struggle to get through but definitely better than the horrible days. I guess I'm just trying to get a grasp one what my future may be. Like I said, I realize everyone is different, I'm just curious what other people's experiences have been. Also...I really respect all of you for having such a positive outlook most of the time. Most of you have dealt with this for so much longer than me. I haven't been dealing with this for all of that long yet and I find myself getting really discouraged at times. Thanks in advance for any input. Heather

Hi sue1234, We study quite a bit of random transporters in our lab. The majority are from the SLC26 and SLC4 families. The SLC proteins are found all over your body. Some have different isoforms specific to different tissues. Each transporter has a specific function, but sometimes it's pretty complicated...especially because some can be activated or deactivated by other proteins nearby. If you find you have any mutations in any of your transporters, let me know. (If you don't mind of course!) It would be interesting to recreate it in our lab and see how the transport activity is affected compared to the wild-type protein. I'm going to start doing some more reading and see if I can find anything as well.

Hi issie, I'm sorry you didn't get more answers from your trip. I know what you mean for wanting to find out the WHY behind this stuff. I'm very interested in the kidney connection to POTS. I actually go see a nephrologist here at Mayo in MN on Monday. I plan to chat with him about the renin/aldosterone stuff. I'm having some preliminary labs drawn on Friday and they aren't checking those levels. I'm going to ask to have that done. It seems like no matter how much salt I take in, I'm not expanding my blood volume a whole lot. I have a feeling everything will come back fine, but it's worth a shot! I work in a research lab that does electrophysiology studies on a lot of different membrane transport proteins. My boss is a renal physiologist, so we do a lot with proteins found in the kidneys. I remember reading in a paper on this site about the renin/aldosterone paradox. It talked about low levels of renin & aldosterone and how angiotensin II helps with sodium reabsorption in the proximal tubule. A few of the proteins we study help transport sodium in the renal proximal tubule. I want to chat with my boss and see if there could be some possible candidates to do functional analysis on. Especially if we could get some DNA from people with POTS and scan for possible mutations...anyway I'm just hallucinating about possibilities here. I would definitely have a vested interest in my job if I could start poking around for answers about our illnesses! Anyway, once again sorry you didn't get more from your trip. I really hope the clonidine continues to help you improve. Good luck! Cheers, Heather

I am the same way! In bed, my hr will be around 58. If I stand up, within a minute or so it is up to 120. It'll be 120-130 just standing in the shower. Sometimes it'll jump up to 150 just walking up the stairs. It is so weird! By the evening though, it tends to slow down some. My hr still jumps up going from laying down to standing, but not nearly as bad in the evening. It doesn't make me feel quite as out of breath and dizzy in the afternoon as well. I've also started getting these crazy palpitations where it feels like someone scared the heck out of me and I have a hard time breathing for a few seconds. Sometimes it'll happen a bunch of times in an hour and then go away. POTS is a strange thing indeed.

My next step is a consult with nephrology. I get preliminary labs done this coming Friday and then the consult on Monday. (Strange side note...they want to do a chest x-ray...what does that have to do with my kidneys?) My boss is a renal physiologist and suggested I get things checked out. After reading through some of the literature on this site, there definitely seems to be a connection in some situations. Anyway, just hoping to find some answers. I'd really love to know what is actually going on physiologically rather than just guessing and hoping that something helps. I have a feeling everything will come back fine, but it's worth a shot. After that...not sure what I'll do next. I guess just keep on moving forward and hope things really improve soon.

I've lost about 12lbs so far. Most of it happened in the 1st 2 months of being sick. Since then, my weight has been pretty stable. Even though I feel nauseous a lot, I force myself to eat throughout the day. I try to count calories to make sure I'm eating enough. I don't want to start losing a ton of weight because it makes me feel too weak. I'm average sized for my height so I'm in no danger of being too skinny. potsgirl...I struggled with eating disorders in the past too. I've been trying very hard to keep that from becoming an issue again as well. Especially now that I have a 3 year old daughter. I don't want to ever pass on that kind of mentality to her.

Sorry to hear so many people are having rough patches. Unfortunately, I've had a pretty cruddy week too. I got excited because Tuesday was the best I've felt in such a long time. The next day was back to more normal day with lots of symptoms. I'm excited though, I am going to go for a nephrology consult in a little over a week. I want to see if there's something going on there that could be contributing to my issues. Tonight has been a bit of a pain though...I got a phone call from my hubby as I was leaving work. He found out that he was exposed to scabies this week at work. Yuck yuck yuck!! I get so icked out by stuff like that. I have been so dizzy/exhausted all day and I've been spending my evening washing all the linens/clothes and vacuuming like crazy. The odds of us having it are pretty slim, but we can't take any chances. I was looking forward to relaxing this evening, but that hasn't happened yet. On the bright side, my house is getting really clean. This was another confirmation for me that I will never ever work in a hospital setting. I have to call the docs tomorrow morning and see if they want my daughter and I to get the same preventative treatment that my husband got. Well I hope everyone has a great weekend!

I'm not a huge salt fan, so this whole high sodium diet hasn't been quite as fun for me. However, I realized that cottage cheese is pretty high in sodium, so I eat that with some fruit during the day. The thermotabs were making it way too hard for me to eat, so my boss gave me a good suggestion. I've been dissolving bouillon cubes in water and drinking that during the day too. It's easy on my stomach and tastes like chicken broth and there's a lot of sodium in it. The only downside is there's MSG and stuff in it. I've never had any food allergy issues, so it doesn't bother me. (On a gross side note, he tends to be a little hypotensive with no other symptoms and craves salt like crazy and actually ***** on the bouillon cubes. He actually keeps them in his desk at work. Ick!)

This is a great thread. It's so easy to get caught up in the negative and start to get dragged down. I can think of two positive things: 1) I had an unusually good day today. (Best I've felt for over a month!) Feeling so lousy makes me so thankful for days like today. I used to take feeling good for granted. Not anymore! 2) Something I've always struggled with is taking care of myself and always putting everyone else before me. POTS has helped me learn to give myself permission to take care of my needs and not feel guilty about it.

I started having gallbladder problems when I was 17 years old. We spent over 2 years getting every test done and all of them came back normal. I was super nauseous and could hardly eat anything (especially fats) without getting really sick. I even had a hida scan that showed nothing. We finally insisted on having my gallbladder removed because I had all of the symptoms and it runs in my family. When they took it out, there were no stones but it was completely covered in scar tissue. The doctors didn't have much of an explanation as to why, but it solved all of the GI issues I was having. I just wanted to let you know, it could still be your problem even with a negative hida scan. Either way, I hope you are able to get it figured out. Good luck!

I've been a little frustrated lately. My neuro doc put me on salt pills to try and increase my bp since it was getting way too low last week (75/35) and have had lots of tachycardia. I've been doing that and haven't noticed a difference. I finally talked to him again today and he wants me to take even more salt pills (6 a day), ibuprofen to help absorb salt, and drink V8 juice. Between those and my midodrine and iron pills, I'll be up to like 17 pills a day. It's getting a little ridiculous. I've still had a few near-syncope episodes in the past few days regardless of the changes. My bp has stabilized but hasn't increased all that much above normal. I've been hanging around 95/50 or so. I work in a research lab, and my boss specializes in kidney physiology. He has been recommending I see someone in nephrology to check out the renin/angiotensin/aldosterone levels and possibly figure out my actual GFR. It makes sense because the RAS system in the kidneys is what controls blood volume/pressure. If something is off there, that could be causing or contributing to my symptoms. Have any of you had any kidney tests done and was it worth it? What did they check on you?

I'm so sorry they are putting you guys through this! I agree with others here that it sounds like an awful lot of weight for her to try to make her gain. I hope they start focusing more on the other issues soon. Good luck with everything, your family is in my thoughts and prayers.

kcmom, I've been wondering the same thing. (I posted something similar around the same time as you.) I agree...I feel like all my neurologist talks about is salt. It honestly gets a little frustrating. I hope he's right and that it will help. I've just started the salt pills today, so maybe I'll be lucky and notice a difference. However, as of now, I haven't been able to tell a difference if I drink gatorade or eat really salty foods. I'm not a huge fan of salt, so it's hard for me to get a lot of it through food. I guess if it's going to make a difference, the pills are an easy way to get a lot of it. I'm interested in seeing what others have to say.

I finally heard back from my doctor today. (He had been out of the office for a few days.) I told him how my hr has been all over the place and my bp has been way too low. Yesterday, I couldn't even get in to work. My hr jumped up to 144 just walking up the stairs in my house. My bp at one point yesterday was 75/35. I was getting exhausted just sitting up on the couch for too long. No matter what I did, I couldn't get my bp to increase. (I'm on 30mg of midodrine/day.) He asked if I had gained any weight since I saw him last. I said maybe a pound or two, but probably because I can finally eat a little bit more now. He said I'm not taking in nearly enough sodium and I should gain like 3 lbs of water weight or so if I'm increasing my blood volume enough. He suggested Thermotab (salt pills) and to take enough to get an extra gram or so. We're going to try them until Monday, and if that doesn't resolve the tachy issue then he wants to put me on a really low dose beta-blocker to control my hr. I'm really hoping this helps because we're going on vacation next week for my mom's wedding and stuff. I want to be able to walk around! Do salt pills help any of you out? How high of a dose are you on? How long does it take to notice the effects? I'm a little nervous about a beta-blocker because my resting hr is around 54. I just don't want to make myself feel even more exhausted. Any insight would be helpful. Thanks!

So sorry you guys are going through this. My thoughts are with you and your family. I hope things get resolved quickly!

I have no experience with that doctor. I see Dr. Fealey here in Rochester. He specializes in autonomic dysfunction, but I'm not sure if he deals with pediatric patients. Although your son isn't super young so that may not matter. He has been really great so far with me though. He spent almost 2 hours with me in my first appointment. If the other doctor doesn't work out, I've had a good experience with him. Most of the people I've seen here have been pretty good though. The majority of the complaints I've had were with Family Medicine, but they aren't really too knowledgeable about autonomic stuff so that's not surprising. Good luck with your appointment! I hope it works out well for you guys. Just saw that I aimed part of this at the wrong post...sorry, I meant to write about your daughter, not son.

Thanks for the advice everyone. I've started keeping a journal of symptoms so I can really track what is going on. Then I'll really be able to see if I'm having more bad days than before. I'm thinking of putting a call into neurology just to update my doc on what has been happening. I was wondering why they were so quick to discredit POTS with the TTT because it wasn't a full-blown test. They only put me upright for 10 minutes and that was it. I also wasn't feeling too symptomatic the day of the test...maybe I was having a "good" day. Anyway, I'm just keeping an eye on this to see if I'm just having a bad spell or if it really is getting worse. I've been on 30mg/day of Midodrine for a little over a month now and it had been making a difference. It has just been the last week that my symptoms have started to worsen. I'm hoping it's a bad spell and things will start improving again. Thanks again!

Hi Everyone, I have a few questions. I have been having some strange symptoms lately and am wondering about my original diagnosis. When this all first started, my doctors in family medicine were convinced I had POTS. It got frustrating because they didn't do much for ruling out other stuff and tried me on antidepressants right away. (Especially frustrating because my primary care is all at Mayo in Rochester...it felt like they weren't really doing anything with all of the resources available.) My tilt table results were borderline. My hr jumped up from 65 to 120 in the first 2-3 minutes of the head up tilt. However within a few minutes, it settled back down into the 80's. I did get really uncomfortable and light-headed during the test, but I did not faint. When I finally got into a neurologist who specializes in automnomic dysfunction he said he believed that I didn't have POTS because the increased hr did not stay that way and didn't go any higher. I was told that I have orthostatic intolerance and blood pooling problems. Lately though...I have been noticing my heart racing more when I am up and moving. Just yesterday, I was making some bagels and while I was kneading the dough, my heart started racing. I checked my pulse and it was 125. My normal resting hr is in the mid 50's. That seems a little excessive for standing still gently kneading dough. I got really light-headed and nauseated and had to go lay down. My heart has been doing strange stuff like that more often lately. I get palpitation/pain feelings with it and get a little short of breath too. Then the dizziness/nausea comes on. It doesn't happen every time I'm moving around, but it's happening more and more. So...my questions are, do you think this possibly could be POTS? (I've seen some of you talk about some pretty fast hr...mine hasn't gotten that bad.) Also, did all of you have a positive tilt test when you were diagnosed? Finally, how long should I let these newer symptoms go on before I contact my neurologist again? Any advice would be helpful. Thanks!

Good for you Naomi for being such a great advocate for yourself! I could definitely take some lessons from you in this department! I hope something helpful comes from all of this for you.

Hi Naomi, I'm still sort of new to this whole dysautonomia thing, but I know exactly what you mean. Most of the time, it takes all my energy just to get through the day and I just want time alone to try and recuperate from my day. It does get lonely though. One thing that has been hard for me was my best friend moved across the country while I was in the middle of being diagnosed. It has been really hard having her gone and dealing with this stuff. I was off of work for 6 weeks. In that time, friends would come by and visit once in a while. Now that I'm back at work, I can drive again...but it's still hard to find the motivation to get out and do stuff. I have a hard enough time just getting through work. The few people I do hang out with are wonderful and helpful though. I still feel isolated a lot. It has been so nice to find this forum! A lot of the time it feels like people are "over" with me being sick and think I should be fine now. I'm hoping this condition will eventually go away, but I've been trying to make them understand that this may be with me for the rest of my life.

My experience is similar to many of you. Whenever I faint, it's always the same thing. I start to feel really hot and uncomfortable. Then I get extremely nauseous and think I'm going to throw up. Then I break out into a cold sweat. When the tunnel vision starts....that's when I know it's going to be bad. My vision just starts to go dark and I can feel myself starting to slip away. The whole time I have this sort of "impending doom" feeling hanging over me. When I faint I'm never out for long, but whenever I come to I usually end up throwing up and feel extremely shaky for quite awhile afterward. Such a yucky feeling!!

Thanks for the kind words! I'm not happy that everyone has to deal with dysautonomia, but I'm glad to have found such nice people to share this experience with!

Thanks for the info everyone! I appreciate you all sharing your stories with me about this stuff.