bebe127

Spinner,

I've often wondered about this in the past. Don't know how reliable the following is, but thought I'd share. At home saliva test: http://www.candidasupport.org/test_saliva.html

Hanice,

I can totally relate. I also agree wholeheartedly with the above statements/advice. I always found (for me) at the beginning of all this that I was checking my bp/hr all the time and it just made things worse. Also, like stated above, I could be feeling all weird and such and take my vitals and they were relatively normal. So...I stopped checking. Now, I do keep records and I check in the am and pm, that's it. I no longer check them when I feel a certain way, because for me it was pointless and just added to my stress.

When I feel anxiety/panicky, I feel that it is quite relaxing to lie down and listen to relaxing music. If you have Pandora (it's free online) you can pick and choose your genre and it sets up a whole list of music for you. My list is very eclectic. I have everything from Tibetan Monks to P!nk so I can listen to whatever depending on my mood.

There is also a book called "The Anxiety and Phobia Workbook" by Bourne that I found to be helpful. Even though (I would hazard to guess) most of us might not have true anxiety or phobia disorders, since we have POTS and other issues that whack our ANS out, thus creating a perpetual "fight or flight mode", I found many helpful tips in this book for helping to sort things out and relax.

My sincerest hope is that you feel better soon. Like Relax says...you can feel better. As you move along on your own personal journey of learning to live and deal with this illness you will find ways to better listen to your body, thus being able to better cope.

Be well my dear!

Bebe

Ask,

I know what you mean about people's comments. One I get frequently is..."Wow, have you lost weight, you look great!?" Firstly, while I appreciate that they think I look so great, I sure wish I felt as great as they think I look Secondly, I've never been overweight, so for someone to infer that I benefited from losing weight is just insulting. Thirdly, I would gladly put the 30lbs. right back on if it would mean that my life would go back to normal and I would feel better!! I try not to get too upset though as they really have no idea what I'm going through; if they did, I'm sure they'd think twice before making such remarks. I had one woman apologize to me for not asking how I was feeling because she says when she looks at me she completely forgets that I am ill. Again, so wish I felt as well as these people think I look!!

My current issue is that I just don't feel hungry, and even if my stomach tells me I'm hungry (grumbling) there is nothing that sounds good. My poor hubby always asks what I want to eat and my answer is always...I don't care. Half the time if it wasn't for him making me something, I'd probably just wither away. I think if I told him I wanted a certain meal from a certain place, even if it was an hour away, he wouldn't hesitate to hop in his truck and go get it. He gets pretty excited when I say I'm hungry, it's really kinda sweet, even though it rarely happens these days!

I've thought in the past that it might have something to do with my medication, but for the first 2 years, I wasn't on medication and still felt little hunger, was nauseas, and had the big "D" much of the time, thus the question about drinking so much. I know that when people want to lose weight, it is suggested that one drinks a glass of water before a meal. I assume that this would cause one to feel full and eat less.

Thanks all for your comments.

I might just look into the whole sleep thing. I am even friends with the head of the sleep department here at our local hospital. Maybe I'll give his wife a call and pick her brain a bit.

I want to feel better and find a dr. that can actually help, but just the thought is so overwhelming. Then again, I think...I'm not going to get better until I get out there and find someone (yes, unfortunately I'm one of those people that loves to complain and then do nothing about it). I don't drive much and don't go many places without my husband, so I have to take his work schedule into mind and I can't just have him taking off all kinds of days to take me here there and everywhere to find a new dr. Of course, if it helps then it would've all been worth it. Just taking that leap is hard for me. I've had such negative experiences before and I'm afraid it will all start all over again and I'll get nowhere.

I did talk to my husband about beginning to see new dr.s and he was very supportive telling me to go ahead and make appointments if that is something I think would help.

Thanks again y'all,

Bebe

Thanks all for the comments

I kinda figure part of it is due to drinking so much too, but much of the time I'm just not hungry and actually have to make myself eat.

I'm not underweight and my weight is staying steady these days. It was just in the beginning that I had lost weight. I've had all my levels checked too through routine bloodwork, and all seems to come back fine.

I do have nutribullet shakes every morning which consist of: spinach, carrots, yogurt, banana, blueberries and coconut milk. I only started those a few months ago because I was concerned that because I don't eat that much I must be losing some important vitamins and minerals. It has really helped with the big "D" too, as far as bathroom issues go, sorry if TMI.

I rarely if ever eat ice cream (maybe once a year), chocolate or candy, chips and that sort of thing. Basically I'm really not hungry a lot, so I don't eat a lot. I have my coffee in the morning, my shake, then throughout the day I might not eat at all or have a few crackers and cheese, sometimes nuts, and my gracious husband cooks dinner, so whatever he has cooked I eat. I only eat about 1/4 of what I used to for dinner. After dinner, I feel worse and I'm on the couch for the rest of the night. Oddly, I have most of my energy in the am. I also have a few beers in the afternoon with hubs when he comes home from work. I know "they" say to stay away from alcohol, but really it is the only time that I feel halfway normal. We've often joked that it must be the carbs or something, because seriously, after just one I begin to feel almost normal. It's weird.

Anyway, thanks again. Hope you all are as well as can be expected.

Be well,

Bebe

Thanks Joann, been missin' ya'. Hope all is well with you and yours. You are right, I totally need to start walking again, or at least doing something physical. Oddly enough, speaking of bathroom issues when I make sure to have my nutribullet shake in the am with veggies and fruit, my tummy issues decrease significantly. I could definitely tell, as we just got back from vacay and I didn't take my nutribullet with me, boy did I pay the price.

Again, been missin' our chats. Hope you are as well as can be expected

Our school year starts tomorrow, maybe I can begin a new exercise routine too! Here's to hoping

Be well,

Bebe

I have had little to no appetite for quite some time now. I've lost about 30lbs. all in the first year of being sick.

My question is (and it might sound dumb): Is it quite possible with all the liquid I drink throughout the day (over 100 oz.) that this could be causing my lack of appetite, because I'm so full of water and such?

Does this happen to anyone else? I would hazard to guess that most of us like me, have been told by dr.s to drink, drink, drink.

Thanks

Thanks Davecom, and I agree that they should earn their keep.

I think I should see a new dr., but I just know that they always start out with routine blood work and mine always comes back fine, then they just kinda stop there. When I suggest maybe some specialty tests like the cata-thing in the urine or an ANA for autoimmune, I get "That's not necessary since all your other labs came back fine." I don't even know what type of POTS I have and can't find a dr. in my area to help me. Even my own dr. just glanced at my list of symptoms (that I had neatly arranged in a chart with frequency) and gave it right back without a word. Going out of town to a dr. is out of the question at this time.

I'm just tired of going in circles.

Again, thanks for listening/reading

Thanks so much ask It's so nice to have someone just listen and understand. Don't get me wrong, my family is loving, supportive and helpful, but I just hate to dwell on my illness in front of them. So many times I keep the pain to myself and the answer "I'm fine" crosses my lips multiple times a day. Just having one of those days I suppose.

Thanks again for your thoughts

I'm really not sure if I want this question to be answered or not. Maybe this is just another rant/pity party from yours truly.

What to do when for all intents and purposes everything seems fine, but you still feel like poop every single day?

I wake every morning to a fluttery heart feeling even though my pulse is fine. I barely get any sleep as it is so hard for me to fall asleep and then stay asleep. I toss and turn all night with back pain that causes me to wake and even at times wake my husband as I groan. My chest hurts all the time, sometimes down my left arm and around my back even. Plus all the other unwanted symptoms that I have daily.

I take my vitals and all is well, but I still feel so poorly. My dr. is really not that big of a help as he only refills my prescriptions and doesn't have the inclination to test me for anything else. As you might know, I was dx back in 2009 and that's pretty much where it stopped. I suppose I should be thankful that I have improved somewhat, but not even close to being my old self.

I have taken some time off from this and other sites to see if I could focus on something other than my illness and its effects on my life, to no avail. I just don't know what to do anymore.

The thought of going to see the dr. sends me into a downward spiral as he hasn't really been able to help in the last 3 years. Going to see another dr. and thinking of starting the whole process over again is overwhelming. I feel like I should really go to see another EP and get a complete heart workup since it's been a few years, but again, the thought of starting all over again...well, I don't even want to think about it.

I just want to feel better...though don't we all??

Ok, I think I'm done. Might be due for a good cry.

Blessings to you all.

43

This is so therapeutic Hanice. I know I wrote a letter to POTS specifically awhile back on my blog.

Hope you are well!!

Bebe

Freaked,

I so feel your situation and I'm sorry you are having to deal with it all, especially at such a young age. Unfortunately, your experiences seem to be the nature of this beast. I was dx. almost 5 years ago now (I'm 43) and went about 2+ years without treatment. I still don't know what type of POTS I have and even the dx dr. only dx me, then told me that he doesn't treat POTS and doesn't know of a dr. that does. I finally found a GP (referred to me by our Pediatrician) that at least has other POTS patients. He is currently treating me. As a side note my teenage daughter (17) was just dx with dyautonomia, although she also has congenital heart defects, but seems to do well as long as she stays hydrated and gets enough rest.

I have improved slightly in the last five years, but I'm not sure how much of that is due to meds and/or me just learning to "deal" with it all. It is all hard to deal with especially when you feel like poop daily and no one seems to have the answers. I would agree that finding a counselor that is familiar with chronic illness could be very beneficial. I think it is important also that since you know that you have hyperPOTS that you try to search out what others have done to improve. There can be a difference in protocol for the varying types of POTS/Dysautonomia. I think I have hyperPOTS (although have never been tested as no dr. in my area knows much about the whole disorder much less the different types) so for me personally, salt loading, compression stockings and all that doesn't seem to help me. I can't take excess salt as it tends to raise my bp too much and into the hypertension area. I don't have low bp nor do I faint.

Everyone is different and reacts differently to treatment. I sincerely hope that you find the answers you are looking for that can lead you to a better quality of life.

Be well,

Bebe

Yes, yes, and yes here as well. First EP dx me, but told me he doesn't treat POTS and doesn't know of any that do, referred me to Neuro. Went to neuro, he said that my problem is cariologic, not neurologic and suggested going back to the referring EP. Went to another EP in the next county up (a supposed specialist in POTS), told me that he concurred with original dx, then added that I only have a "mild" case since I don't faint. Told me all my symptoms were not POTS related (mind you, all the symptoms I described to him were found on the paperwork that the original EP printed out for me from this very site), even told me that my chest pain/discomfort had nothing to do with heart. His brilliant recommendation was to see a psychologist and to find a dr. closer to home to treat me. Went to psychologist, what a joke. Finally found a GP that at least has other patients with POTS that he treats. He has been treating me for 2+ years now, although my other symptoms confound him and they are not willing to test me for underlying causes or anything other than "routine". He actually referred me to a cardio for the chest pain/discomfort, I emailed the dr. to see if he was familiar with treating POTS, he actually responded, but told me he didn't and referred me back to the dxing EP...yeah, the one that just tells you you have POTS, but doesn't do anything about it.

I am at a point now where I am so physically, mentally, and emotionally blitzed that all I can do is try to do what I can when I can. I'm not going to see any more dr.s in the near future. I have come to the realization that I may never know the 5 w's in my case, but I can't let that stop me from trying to live my life.

My Ping-Pong is all dented now and I have chosen to exchange it for a nice, shiny new one. At the moment, I'm just on the table, leaning up against the net until I get the energy up to roll one way or the other

So sorry you are having to go through this, and unfortunately you might find that this is the way of this illness. I do hope you find some answers and get the treatment you need.

Be well,

Bebe

I must be one of the few that can tolerate alcohol. Honestly, have 1, 2, and sometimes 3 beers and I have no idea why, but I actually feel relatively normal. This is really the only time I feel like my old self. I can only tolerate beer though, weird. I used to drink wine and mixed drinks (rarely beer), but now if I do, I don't feel well at all. Sooo, beer is my newish self-medication. Disclaimer: I would never suggest that drinking alcoholic bevs is the way to go. Everyone is different and reacts differently. My husband and I have questioned why the beer seems to make me fell half-way normal, even asked the dr. and never have found out why. We've tried to justify it by saying that maybe it's the carbs or something. All I know is...it makes me feel better, more like my old, fun loving self.

Hanice,

So sorry you are dealing with this. I too have issues with reading aloud, although not to the extreme that you explain. I remember reading on the Dinet site on "Things to Avoid", one of them was singing. I would assume that reading aloud would kinda be the same.

I homeschool my kids (now teens) and I still read aloud to them. As I said though, I don't have the same reaction as you do. Mine is more like a winded type feeling, or a feeling like I can't catch my breath. Sometimes it's hard to get the words out, or they come out all jumbled, so I can only read for short periods of time. Luckily my kids are gracious enough to accept this and be patient with me.

I hope you find some answers soon

{{Hugs}}

Bebe

I always hurt when I wake in the mornings, and many nights I moan as I toss and turn due to the pain. My muscles and joints always seem to hurt. This is relatively new to me and haven't mentioned it to the dr., I just figure I'm out of shape. I always get out of bed and feel like I'm 100 as I hobble my way to the restroom. Actually, though, energy wise, I do better in the am than in the pm. If I exercise (even Wii Bowlling) for 10 minutes, I'll be so sore for the next few days. I really puts the kibosh on my motivation to exercise

I was a teacher many moons ago before I had children. I have been a stay at home mom since and I homeschool my children. I was dx. 4+ years ago. After getting sick, I always semi-joke that if I worked and my kids went to school, I'd have to quit work and homeschool the kids. I really don't think there is any way that I could work full time. I do teach at a homeschool co-op one day a week for 12 weeks during the school year (classes are held for two semesters of 12 weeks and I only teach one semester) and even that wears me out completely. Now I only go out if it is necessary and even then I have to back out a lot. I've never missed teaching a Friday though.

Welcome to the group Thegron!! Hope you find some answers soon

Be well.

misstraci,

The green shakes are a staple in our house every morning now. It's the only way that I can be assured that we get at least some veggies into our systems I'll tell you too that I've noticed a positive as far as GI issues go too.

Thanks for the thoughts on my daughter. She's a fighter and won't let anything stop her. She does really well as long as she stays hydrated. In fact, that's when we really started noticing the symptoms. She would usually get all shaky and tachy when she came home from spending the weekend away with friends where she wasn't watching what she ate, how much she drank and of course not getting enough sleep. Now she carries water everywhere and keeps packets of Propel to add to the water if needed. She is still able to do all the things she was prior. The whole dysautonomia thing is on the back burner right now as she has other congenital heart issues (PFO/VSD). We still haven't been back to the dr. yet to go over some recent tests. I'm assuming she'll go over the whole dysautonomia thing then. The one thing that the dr. told my daughter was to drink, drink, drink water and believe me, I do my part in nagging ALL the time. My daughter's dr. was the only one to actually take my daughter's vitals while supine and while standing. Not even my dx. EP did that to me. I was dx. 4+ years ago. I only told my daughter's cardio that after she mentioned that my daughter had dysautonomia and she even said that it is known to run in families. Hopefully, we'll find out more when we go in for a follow-up. Might even be able to see if my daughter's cardio knows of a dr. that treats POTS in adults. Here's to hoping

PackersFan,

Welcome to the forum. I think you will find lots of information and experiences as well as some really compassionate and encouraging people on here. You will find you are not alone. The only advice I can give is to find a doctor that truly treats dysautonomia. Also, as you go along, you will begin to know and listen to your body. Personally, I just have to do what I can when I can. Sometimes I push myself and pay for it later. Keep your chin up and try not to give up. Finding this forum was one of the best things I ever did.

BTW, I've often wondered on here why dr.s insist on inducing a reaction? I would think that would invalidate the test. Wouldn't "normal" people have an adverse reaction to nitro or anything else for that matter? And if so, what does the test with nitro prove?? As Katybug stated, it's the significant increase in heart rate that is the standard. For me personally, my heart rate increased 100 bpm upon the third tilt, and I never fainted. In the literature I have read, only about 30% of "POTS" patients faint. My blood pressure increased as well. The only medication that was administered was something to stop an arrhythmia if in fact I had one. As it turned out, I don't have an arrhythmia as the medicine only made things worse.

I feel like you in many ways, especially the "crappiness". That's really the only term I have found to explain how I feel as well, besides, for me, it's like I have the flu, menopause, and a hangover all at the same time.

Bottom line is to begin to know your limits and your new life. Try to find what works for you as everyone is different and reacts/responds differently. I hope you find some answers and you can get to where you're feeling better.

Be well,

Bebe

misstraci,

I don't know what the difference is either. My hubs did some research and ended up getting Iron at GNC but it's only 65mg. and my daughter's dr. wanted her on 200mg a day. I've never put her on the 200mg just because of all the warnings about iron overdose (plus she takes a woman's multi vit), she's gone up to 150mg, but now she'll just take two 65mg. There is such a huge difference when she is on the iron as opposed to when she was off it. I also make her a spinach + other yummy stuff shake to drink (gag down) every morning. I think the shakes are yummy, she...not so much

BTW, I think the iron my hubs got was ferrous sulfate. I just know when the dr. first told us to put her on the iron supplement, he emphasized that it must be elemental.

She is not allowed to give blood either, which in her case is good because she was also recently dx. with dysautonomia as well, although she does really well as long as she stays hydrated.

Hey there,

Wanting to know if anyone is on Iron (elemental)? My daughter is anemic and her dr. suggested she be on an iron supplement, and insisted that it must be elemental iron. For the past year we've been able to order it through our pharmacy (Irofol 150mg Iron (elemental)) but now they aren't carrying it anymore and claim that they can't find anything similar. I even asked if it would help to get the doctor to write a script and they told me no, that they have no way of ordering it in their system. What to do??? They suggested I look it up online and try to order it that way, but I'm wary of that as one never knows what they are really getting.

Any suggestions?

Thanks!!

Have you been to an ENT? My husband has been suffering from Viral Labrynthitis for the past six weeks. Good news, it's not permanent, bad news, don't know how long it will take to go away. It has to do with a virus that affects your vestibular nerves (nerves going from ear to brain). What you explain about your head is somewhat how my husband explains his. He feels as though his head is going to pop off, not really in pain, although he does get headaches from it. He says that it feels like intense pressure in his head and ears, like his ears need to pop really bad. He doesn't get vertigo or positional dizziness either. He basically says he feels like he's trying to come down with a head cold that just won't go away. I think he's having perceptual problems as well with his eyesight, he recently tripped up some stairs. Not like him at all. Tests have shown that he has visual issues as well, like his tracking is all off.

Don't know if it helps, but you might consider a trip to an ENT.

Hope you get some answers.

Be well,

Bebe