Akgirl

Yes yes and YES!!! I have to take a triple dose of miralax everyday! I have always had IBS and constipation but with my onset of pots it has gotten horrible. Also I am having bladder issues too the doctor said I now have CRONIC constipation on top of it all. Oh well, I guess dyautonomia isn't for whimps!!!!!

Hi Alice welcome, I wasn't able to put mine in the proper place standing like Maia. I needed surgery to do that. Before my surgery My kidney would go back in its proper place when I was laying on my back. Every time i would stand my right kidney would not only fall but it would also twist and kink. Wich caused everything to start to back up and therefor become toxic. I had chronic kidney infection and a lot of flank pain on the front. The funny part is, my left kidney also falls but it does not kink so therefore is not dangerous and does not pain me so I never received nephropexy on this side. I don't no how many millimeters my kidney actually fell? I remember the surgeon saying It was able to go all the way to my pelvic floor because I had no fat to stop it? I don't know if it really did this or he was just theorizing?? As far as pots and tachycardia I was not diagnosed at the time. I am 31 now and that was about 12 years ago. It took me literally 5 yrs to recover from the surgeries. I was in chronic pain from nerve damage and loooots of other complications. I was not diagnosed with pots until this year. I have always occasionally passed out but nothing compared to my life now! So perhaps I had pots back then And now it's a full blown case? Who knows, but please consider the risk before getting the surgery. I know not everyone's the same and hopefully others have had better luck with it than me but it has NOT cured my dysautonomia and pots.

Hi, wow! Sounds like your writing my own story!! I am a major fainter with pots too but I also have seizers as well you need to get compression stockings ASAP!! They are so ugly, brown and expensive but in fainting pots cases like us, they are literally life savers!!! I wear 30-40 hz all day every day!! also I have learned to "push my faint down" I know that sounds bazaar but its a little like smothering a yawn. I am certainly not always successful but sometimes I can feel my self starting to go down and I can push it down? Also I am on lots of medicine!! as well as physical therapy and vestibular therapy for major visual problems and dizziness. So don't give up!! Go get a good neoroligist and don't give up hope.

Maia, the doctor was totally amazed about the lack of brown fat and said he figured that you would probably see it a lot in 3rd world countries but had never seen it or heard of it. My mom had nine healthy pregnancies and for what ever reason I have always had health issues? Her pregnancy with me was no different than any of the others? As far as the kidney ripping off, that's exactly what happened to me!! I actually felt my kidney rip lose after a week and it was the grossest feeling, not to meantion depressing because the surgery is pretty major. I am now so filled with scar tissue inside that with my last pregnancy I had big lumps all over my stomach!! They also had to cut and scrape out mass amounts of scarring from the first surgery to even reach my kidney the second time. It was horrible and i ended up spontaneously hemoraging and so the surgeon clamped into a bundle of nerves so I also got nerve damage as well!!! Blah blah blah honestly I could keep going on about all the bad things about nephroppexy. At the time I was not diagnosed with pots, (although i suspect i had it) in fact the weird part was I was not even close to how sick I am today with my kidney in its proper place!! So who knows!

Bummer that ur having such a hard time getting disgnosed!! I got my nephroprotosis diagnosed very easlily with little hassle or fighting. They used a ivp and a tilt table. Also a ultra sound while on tilt table. The uroligist also used a devise that looked alot like a toilet plunger to munipulate my kidney around my body cavity. Mine dropped all the way to my pelvic floor. The reason mine flops is because I have no interior body fat. When I had the surgery the doctor was AMAZED and actually wrote about it in a journal somewhere I guess normally all your major organs are held in by a thick layer of brown fat (wich is developed in the womb) I do not have any. Apperantly my body cavity is totally pink and when he opened me up and was able to reach in and pick my kidney up with his hand. So that's another thing I am curios wether you will have or not? You can't tell with scans ect. If you have interior fat.

My doctor said I should have all 6g of salt in by 6pm. And don't eat any after that. He said because when you are at rest your body metabolizes it differently?

I take 2 one gram salt tabs twice a day and then also salt load everything else. I am supposed to get a minimum of 6 grams a day and drink 2 liters of water. But for the salt to work I take florinef as well, twice a day.

I have been on Florinef twice a day since January of this year. It has made a huge difference on my tachycardia. And in general my overall pots symptoms. I have infortunautly gained about 20 lbs from it and most of the weight is on my stomach . I have a hard time with this because weight has never been a issue for me until now. As far as Bp it has also helped my swings with this as well. As far as other side effects, headaches and insomnia. I have both of these! I take topamax for the headaches and 75mg of over he counter sleep aides every night to sleep.

After I eat to big of a meal or do to much exersize if i dont get tachy and faint then I do this really weird thing. I get really pale and my lips turn chalky and my hands feet and nose turns like ice and I go into a trance or a daze. It's sort of like I pass out with my eyes open? When I come out of it I go usually go into a yawning fit and can't stop yawning. I then have to put my feet up and drink water or Gatorade and take salt tablet or else sometimes I go into a seizure.

Yes!!!! You are correct, I take 0.1 in a.m and p.m. I also take my beta and seizer meds this way to. Also another HUGE morning trick for me is I set a alarm and take my meds and rapidly drink about 8 oz of water about an hour or so before I have to get up. This was a tip from my nuero and it really helps a lot, the water gets your Bp up and your meds get a chance to start kicking in. Plus you usually have to pee by the time your alarm goes off again But back to the Florinef, my nuero was very specific about splitting the pill times. He explained exactly what you are thinking, that your body always has a controlled dose and how important it is to make things easy on people with dyautonomia because our system is already in shock and can't handle things like medicine dips. But it's super important to take them at exactly the same time every day as well.

Correction... I just re read your and noticed yours said days not minutes!!! Mine lasts for minutes at a time not days. But it sounds along the same lines though.

Yes I get this too from exercise and really anytime I push my limits at all!! I almost go into a trance or daze. I can't feel my body, like I am weirdly disconnected to it. Kind of like I fall asleep while awake or something?? It's super weird and I also do this if I eat a big meal. It feels like I get sucked into a vacuum, I just feel very detached to reality????? I have been wondering what this is? Is it from lack of oxygen or what? Also when this happens I usually get a very numb tingly mouth and nose. And my face I guess gets very pale and my lips turn chalky and eyes go blank. But the strangest part is is that I really don't think I am in tachycardia during these times?? Although after these spells my feet and hands and nose are always freezing cold so it must be something to do with circulation?

I am on atenolol and it really helps. If you change betas.

I just accidentally posted to you on a different thread grrrr!!! I didn't notice that you had responded on this one. That sounds like a really cool program though, I wasn't aware that you bring something home with you!! In the other thread I asked you about medication. I feel like currently that's what's holding me together. So does the bio therapy take place of your meds? I would love any and all details you are willing to share!!

Hello, I have been trying to follow your blog and this thread, and I am wondering how things are going in Texas for you? I am considering going there and was looking forward To reading about your experiences. I have a couple of questions for you that I think are appropriate for this forum. 1- how much does it cost 2- can you explain what they are doing to you and how it makes you feel 3- are you supposed to be better in 2 wks and that's it? No more going back there for follow ups?? 4- what about the current medication I am on. Is the doctor okay with it or do they take you off it? I would love to hear the answers and any other tid-bits you might share

Not a chance!!

Yay!! For you I am so sorry you have been having such a rough time!! My fingers are firmly crossed that you can continue with such great progress.

Does anyone know of someone that's been helped from the two week program? I live in ak so it's out of the question to go for any longer than a month.

Keep me posted!! Super interesting!!

Oh wow!! Tough times racer! Hang in there we are all cheering for you

Hi there, I am also 31 and have extreme blood pooling. I was diagnosed with pots among other things. as it sounds like you possibly have as well. But the most important thing to remember is you are NOT alone. I have found a lot of support and encouragement as well as information on this site. Anxiety is hard to deal with! But just remember wether you stress about your potential diagnosis or not it does not change the out come a bit! When testing for pots it's a very black and white test ether you have it or you don't. So stop stressing and enjoy life

I am not sure about the klonopin, but atenolol works great for me! I take it twice a day and I had some pretty minor side effects for the first month or so but those subsided and I really like it. I feel like its helped with my pots symptoms alot.

So, as far as I know they didn't kink anything. The second time they just re cut me open and tied it to my bottom right rib and sewed in to the muscle that runs along your spine. I think I would know it they kinked anything because before I got the surgery I could go HOURS without peeing and had frequent kidney infections and constant flank pain.

Wow!!! Is so comforting to realize I am not alone in this illness!! I so greatly appreciate your experiences!! Sue1234 I really feel like that is the conclusion I am drawing on my own! Thank you all!!!!

Wow!! Has anyone else been cured by cabbage??