hollie

I've seen in so many posts where some of you are figuring out (or trying to anyway) the onset of your POTS or causes of it. Is that really important? My docs have NEVER even talked about it. Should I be trying to figure it out? Will it help with symptom? Any thoughts on this? I would love to know how and why it all started, but have never pushed the subject because I didn't think it mattered. Does it make a difference?

Thanks for your thoughts!!

Hollie

Well... I survived! I did not walk much at all, but I survived! My team of ten completely abandoned me. They wouldn't even walk ten feet with me. I saw what kind of people they really are. They treated me as if I was faking - of course! Anyway, I'm proud of what I did accomplish. It was MUCH more than I thought I would ever do! I am paying for it today, but it was worth it.

Hollie

So... I signed up to walk 60 miles in three days in the Susan G. Koman Breast Cancer 3-Day Walk. I know... DUMB! But I do have some reasoning behind it. My mom was dx with breast cancer last summer. I signed up in January. I had symptoms for a while before i signed up that were getting worse, but I thought I just over-did it at Christmas. But I majorly crashed in Feb. Now I can't walk a block without at least a little challange. I have walked as far as two miles while training for the walk. However, that 2 miles took me about an hour and a half and I was dead for two days after. I'm on a team of 11 people and they are all in good shape and will have little difficulty doing this walk. I'm going to walk what I can, but I don't want to over-do it. I want to be able to at least finish out the weekend without going home - or the hospital. I have a feeling I'll be sitting by myself more of the weekend than anything.

I guess I'm looking for suggestions from you guys. I know... the usual... drink, stockings, rest... I need help with my teamates. I don't know how to get it across to my team that I CAN'T do that much or even walk as fast as they will want to. They all know I'm sick, but like everyone else, they don't get it - AT ALL! I don't want to look lazy, but I don't want to whine all weekend.

?????

Hollie

I have extremely bad vv (and they keep getting worse). I've talked to my dr about "taking care of them" for the last 4-5 years. She always tells me to wait until I'm done having kids or chances are, the vv will come back during pregnancy. So I just let them be. I got my POTS dx in Feb. and have talked to 2 different drs since. (I've since desided I'm done having more kids - so am ready to get rid of them.) Anyway... Both have told me that they don't usually contribute to pooling (dys symptoms) - but I don't think it can help - seeing how much they pop out every time I'm on my feet. They do cause pain, but for me, it's after I'm on my feet for a while - not usually when I've been off my feet for a while. It's more of a full leg pain, not just in one spot. I have learned also (because I have a blood clotting disorder) that vv can cause clotting so I need to keep an eye on them. If there is pain - I would have it checked! Also, look for a lump where the pain is. That is another sign of a clot (but doesn't always present itself). Basically, if pain continues, I would go have it checked. Bad thing is, clots can travel, so the pain may go away anyway.

That's my 2 cents... hope it helps.

Hollie

If this was me... I would be SO "P"ed off! First, I would drop that doc like a bad habit! If they're not taking you seriously, they cannot help you. Second, go find someone that will pay attention. Yes, it may take time, but chest pain is no fun and it's not to be taken lightly! Third, I would let nearby doc know why you've given them the cold shoulder. I don't know if I would have the guts to talk to them face to face, or even on the phone. However, I would write a letter to them. Even though that email was not ment for your eyes, you still received it and read it. I can't help but think that maybe far away doc sent you that letter so you would know what nearby doc really thought of you. I think he was looking out for your best interest, which is more than you can say for nearby doc!

Another thing that I've done in situations like this (not doc related - friends, family, co-workers) write a letter that you would send to nearby doc. Put everything in it you have wanted to say to them for years (good and bad). Once you get done, then decide if you really want to mail it. If you don't mail it - burn it. Just getting it on paper & out of your system will help you more than you know!

I hope things get better!

Hollie

Awesome find!!! I've never heard of Dioralite - Can anyone get it - if so - where?? I just had one of those crashes last Thurs.

Hollie

I'll bring all the drs. that thought it was all in my head so I can show them that it's real!!!

Oh... and chicken broth cuz I want to see how many people actually can down it!

Hollie

I, along with everyone else here, understand what you're going thru! I too find that venting here helps. I have few people I can vent to in my "real life". My husband will listen without complaint when I need, but I don't want to burden him too much. He's had to work about 75 hours a week since I can't work full time anymore. I'm home with our kids and they're sometimes more work than actually going to work. Then he gets home and the house is a mess because I'm too tired to clean up after the kids. He didn't sign up for this either! I'm only 29, so I feel like I've got a long way to go in life too. I wonder almost daily what my life will be like in 5 years, 20 years, etc. I've had the same "it's not fair" attitude from time to time. My attitude is (trying) to get better and most days it's working to some extent. Yesterday was a bad day for me. It was about 90 degrees out and humid. I wanted to do absolutely nothing but had a list a mile ling of things to do - none of which got done.

Anyway... vent all you want - I wont think poorly of you or your attitude. Sometimes we all just have to get it out. This forum is my therapist! And it helps me almost daily! We will be much more sympathetic than a therapist anyway! Take one day at a time and try not to dwell in the future too long. The past is over... the future is unknown... and now... it's a present!!

Here's to the ventors and the venties....

Hollie

I've had a woman at work with a bad aditude towards me for the past few months ever since she started working with me. She treated me poorly and would make me do most of the work. I fainted in front of her about two weeks ago and now she is the nicest thing in the world to me! Sometimes, people just need to see for themselves what you really go thru before they truly understand.

Hollie

It's ironic that I came across this post at this moment. I am literally sitting in a dark room in complete silence because of this. My family is upstairs watching "ET" of all things and I had to leave as I was starting all that and a headache. I HATE IT!!! (Can you tell I've had a bad day?)

Hollie

Welcome aboard! I joined in Feb. and it's been the most helpful thing yet!!! Check out www.butyoudontlooksick.com - the spoon theory (loved it)

Hollie

I'm on 50mg a day (plus florenef and BB). It has seemed to help me - so far. I just started taking it about 5 weeks ago and have noticed I feel beter and can do more when I'm on it. As for you... could be the heat, could be the meds. I wouldn't rule out either one right away.

Hollie

I think this is something only you and your dr. can deside. I think every woman and every situation is different.

As for me... I have two children and I had not been dx until they were 3 & 5 years old. I always wondered why I had such rough pregnancies. I had symptoms for years and I did feel them much worse when I was pregnant. I was on bedrest for the last 3 months of both pregnancies because of fatigue and contractions. (contractions started at 19 weeks and 17 weeks) Now... whether the contractions had anything to do with POTS... I'll never know. But I do know the fatigue, light headedness, etc. was POTS. I do know I always wanted 4 kids, but we are now done at 2. I've desided that the two I have are enough to keep me running more than I can handle already. I know I would not be able to physically handle a baby. For me, bending real low or squating makes my symptoms worse. So having another little one would be rough! (Probably more so after the baby came than when I would be pregnant.) Maybe had I known that I had POTS back then, I may have been able to control the symptoms more.

I think the questions asked before are very important. I think it all depends on what you're willing to go through and what your support arround you is willing to help with when needed - whether it's before the baby comes or after they are here. Good luck desiding!

Hollie

I'd say stick with what works for you!! Otherwise, you sill over-do it and you'll pay for it!

Hollie

Great show! I would LOVE IT if everyone I know could watch it! It hit SO close to home for me.

I'm glad you have a huge step in the right direction with your family. I don't think you're alone in that. I know my sister and parents watched it too and had a huge learning experience! Thanks again for posting about the show!

If anyone out there missed it... It's on again 8/2 at 7pm EST and 8/3 at 12am EST.

Hollie

I'm glad you posted this about the show tonight! I had no idea about it and plan to watch (and tape) it myself. I've already told a few others about it too.

Thanks and good luck with your sister tonight! I hate to see anyone "cut" loved ones out of their lives. She'll come around... just give her time. How old is your daughter? I was thinking if she was old enough, maybe she could talk to your sister. Sometimes kids see the truth more than adults! I know mine do and they are only 3 & 5!

Hollie

I've been pretty lucky that most of my episodes heve been at home. The worst I would say was the grociery store. Everyone just looked at me like I'm nuts (of course). As strange as this sounds... I would actually like some of my friends and family to watch an episode so they would know what's going on and see how bad I get. Most have not witnessed it.

As far as advice... you name it! Nothing that I'm sure you haven't heard before yourself. Although, I was told I need more sun once. I didn't get that cuz I'm constantly outside with my kids!

Hollie

Balance is probably the hardest thing! How do you make yourself feel ok and your loved ones not feel ignored? You don't want to miss out on anything either. I have two young girls who constantly need me. Where do you draw the line? The sad thing is, I think they understand better than most adults when I'm feeling bad. Take it easy this week! Hopefully you'll catch up and feel better soon!

Hollie

It seems like some part or another of my body is twitching at all times. I just let it ride. It hasn't ever hurt, just annoying. It may last a couple minutes or a couple hours. I've never done tests or anything for it. Once again, you all have shown me that I'm not alone. The more I'm on this site, the more I learn!

Hollie

Interesting thing for me about Dr. Fealey from Mayo MN is that I felt he was the most straightforward and honest and without a blink, he has been the best doctor I have ever had in my entire life! He was very compassionate without being too personal, he was scientific without being cold, he was specific about all the information without talking over my head or making me feel inadequate.

I cannot over state the positive effect this physician, his information and his care has had on my life. I only wish I could see him more regularly.

It will be a personal decision for you, I don't think you can really make a mistake, Mayo will help you get the answers you seek IF you are willing to work their "program". You are always encouraged to ask follow up questions and no one has to leave there without feeling that they have done everything to find a way to improve the quality of their life.

best regards,

tearose

I'm SO happy for you that you have had a great relationship with Fealey and Mayo in general!! I have had good experiences there too. They were the ones that actually dx me after how many others had not been able to. I may have just had a bad day when I saw him - who knows! I only saw him once. Now I've gotten into another dr. that has help my family in verious other aspects and I respect him a LOT. I just saw him for the first time last Friday and have a lot of hope for help!

Hollie

I have a hard time later in the day also. I thought I was the only one! Everyone here has said that mornings are bad for them. That is my best time of the day! I have highs and lows in the morning, but then crash mid-afternoon.

Hollie

Mayo in Rochester MN: Dr Robert Fealey. He is thorough, brilliant, professional and will explain things to you.

I saw Fealey too. He took a LOT of time with me and was VERY knowledgable. However, he left me feeling very discouraged. He made me feel like I was as good as I would get - which was not good at all! I don't want to say bad about him, but he just wasn't a good match for ME.

Hollie

I am sorry to hear she is not being suportive! I think we have all had that to some degree in this mess. If you haven't, you're one of the lucky ones!

I also have had issues with my sister recently. She told me "If you would just get it out of your head, you would be fine!" WHAT? My response was " If you lived like this for one week, you would know what it's really like and it's not just in my head!" Her words are only words, but they still hurt. I was mad for about a week at her, but decided that was only hurting me, not her and I let it go. Hopefully (soon) she will see how much it really effects my life.

Hollie

Me too. I've always liked to stretch right after I wake up. The only way for me to do this anymore is to stretch while I'm still laying down. Even just stretching sitting or (especially) standing, I feel that way and have fainted a number of times.

Hollie

I recently (Feb.) was in the ER for a "panic attack". At this time, I had not been dx and was not sure what was happening. It started with other POTS symptoms that I had for a few weeks. I had seen a dr. a few times... no clues. Anyway... I fainted in the shower because of the other symptoms and couldn't stand. I had to bang on the walls for my husband to come get me out. I said take me to the ER - something is not right. So on the way to the ER (15 min drive) I started going into this panic attack because I was feeling SO strange from all the other stuff. My lips where tingly first. I noticed I had really shallow breathing so I tried to slow it down, but was unsuccessful. Soon, my fingertips were tingly too. Then my toes... It worked it's way up my legs and arms. Soon my hands where curling up and I couldn't move them. The muscles where so tight they hurt really bad! I had to have my husband (while he's driving and calling 911) pull my hands straight again - but they wouldn't stay. My arms, legs, face and even my midsection were numb and tight as they could be. I thought I was becoming paralized. As soon as we met the parametics, they slowly calmed my breathing. It took about an hour and a half before the numbness was totally gone. They informed me that the hyperventalation was cutting off the oxygen to my body so everything was "falling asleep". If I had gone much longer, I would have passed out. Passing out is a way for the body to shut itself down so it can start you breathing properly again. Sad thing is, they only saw the panic attack symptoms (hperventalation) and not all the other the POTS symptoms. So they sent me on my way after a few tests - thinking I was crazy!

So... I didn't wheeze or anything like that - just short, useless breaths... tingly all over... lead to numbness all over. I get this still from time to time, but now know what is happening so I slow myself down - take deep breaths in and out - counting to five in and out - REALLY SLOW. I hope this explination helps! Glad to hear he can even ride his bike - even if it's only for a short time! I don't know if I could go two blocks on a bike. Hope he's feeling better!

Hollie