cupcakemomma5

Can I ask where they sent you. I am currently awaiting Hamilton as well. Due to a crummy doctor and sub par testing....Very long story...lol

Sending you {{{hugs }}}

My doctors finally said enough already and put my on a light sleeping pill. Which is not the greatest due to becoming dependent on them...so I really had to way my pros and cons carefully.

I was going to say Something, but Jackies post pretty much sums it up. Maybe a small portable fan if you feel yourself overheating...

Hi there Wendy!

My name is Tara, dx (somewhat with POTS). Still waiting to see specialist. Sounds like you were fortunate and have adoctore that knows about invisible illnesses.

Where are you located?

For me it's not the heat, it's the humidity. I actually decided to take a walk (5 minutes on a good day) to the park with my kids, pack a water, had my compression hose on..etc. Was there sitting in the shade and my hr was in the 112 sitting! I was terrified when I stood up it spiked to 140-168. It hasn't spiked like that in a while. I made it back home walked upstairs to my bed, put a cool compress on my neck and next thing I know I am picking carpet lint out my mouth...passed out!

My meds haven't changed, nothing....Just the humidity.

Wondering if this is common, our potsie bodies not being able to adapt to the weather...

Any feedback would be great.

Thanks

Margiebee, this is what I adore about this forum. Even though we may not be there physically to give a huge or hold a hand through tough time The moment you get on here there is always someone encouraging, listening,sympathizing, just understanding what we go through on a daily basis. At least on this forum, if we are having a crusty day it's okay...People get it.

So be proud that you never gave up. But also know you have support in this forum

Reconditioned my bumm. I chase my 5 kids and run a home daycare. When I saw the specialist he asked about exercise, I told him that I do yoga and plates when at the end of the day I can just screen myself off the floor. He actually said to be....."No, real excercises".....lol

I asked him what he did to be conditioned, that was the end of the appointment!

I received a phone call from my Doctor (yup, her, not the secretary ) which is never nice.

Well it turns out that my superficial clots in my lower extremities are migratory clots in the superficial veins. Well this can be a form of cancer (tousseaud syndrome ) She said to me "Don't worry, however you are booked for an ultrasound of the abdominal,pelvic,tvp,leg,dvt, and a chest x-ray to boot! And transferring you to a doc in internal meds who specializes in this and hemotology.

But do worry about it.....lol

Just wondering if anyone here on the form has heard of this.

I know because I do pool in my legs Potsie symptom , if this is just one of those freaky deaky things that was in the chips. I'm done...I wanna act like a spoiled child and say " I'm taking my marble and going home"pfffffttttt

B

I struggle with this too. I used to drink a gallon plus 3-4 glasses of v8, oj or something with lots of potassium (I'm on florinef) than a dr told me it was too much, I was depleting minerals and to only have 62 oz.
at 62 oz I am SO thirsty. It's been a real struggle. I've decided that Ill drink a min or 62 oz. if I'm thirty or on really hard days I allow more. I'm just always thirsty. Sometime I think I could drink the ocean. I told him that and he said "why are you thirsty." Grrrr & he works witha. Lot of pots patients.

Bananas, where are you living. I was told to cut back an the caffeinated drinks and that OJ would be okay, however when I drink too much I feel likeihave overdone and my body was canceling out the minerals I needed. It is frustrating.

Dave,where do you find this elemix?

Really sorry racer that is has not been easy. Maybe a new gi might shed somelight into things.

Good luck : )

Interesting, I never thought about anything else pooling besides my legs and feet. Explains alot for me though, I will be bringing this up at my next apt.

Hi bear : )

I ordered x-tall, and one tall. Both fit fine. I should have clarified in my last post (sorry diabeticgonewild) The 30-40mmg have toes.

The 20-30mmg have toeless ones.

I figure because I have to wear them everyday all day, I couldn't afford sigvaris or jobst, and they didn't dry fast enough to wear them daily. So....I buy 1 expensive pair that my insurance covers and buy 3 cheaper ones and I am covered fir the week.

Hi there,

Welcome to the forum. I have found it tremendously helpful : )

I am 5'9 and a bit and on florinef as well....lol. And I have had some not so lovely weight gain on it. I have purchased jobst, median, and another brand of compression stocking and honestly I find Allegro the best for the price.

I think the Site is britelifedirect.com if that's not it Google Allegro brand compression I get the 30-40mmg toeless stockings for like 35.00$.

Good luck : )

Hey there, From Ottawa....

Well I don't know if this helps at all....

I had an upper and lower scope as well and showed that I too had a hiatal hernia, never had any symptoms (other than normal self inflicted stupidity ) Am now on meds and feel like crap, my doc is re-doing the scope in July (Yay Me....lol)

I will be googling loose wrap and such.

Good luck

This was shared with me and thought I would pass it along.

http://more-distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

Great Read. Will be printing and posting on my fridge!

Thanks Alex : )

When I get one of those, and I get them alllllll the time, I pretty much time the advil and tylenol back to back. Take extra strength advil and then an hour later 2 migraine relief tylenol. This does take the edge off of mine. I was taking an acetaminophen/tramadol mixture, which worked great but now due to me being on cymbalta there is an interaction I must be cautious of.

Try the advil and tylenol mix. Good luck.

I guess I am just as curious on this subject. I was a long time smoker and finally broke the habit in January 2012. Then diagnosed with POTS in Aug 2012. Come to find out that I was misdiagnosed for years but me smoking hid my actual symptoms. I had quit in the past and became quite ill, and doctors said it was anxiety and depression. Surprise! POTS along...lol

I am more tempted than ever to try it, however it was so hard to break the routine the second time around.....I just don't know, definitely more research needed on this topic.

I can say, that since I have been on florinef I have gained a lovely 30 pounds...YIKES!

Doctor did say that it was normal...Very frustrating, I don't have much of an appetite to begin with due to all the meds, so gaining weight while Not eating is not fun!

Ooohhhh, Insomnia is a good one, blood pooling would also be a lovely one to add.

It really is said when there are more checked than unchecked...lol

I truly find it interesting how many of us are dx with low B12 and low Iron.

And how are bodies are either absorbing them or not. What's the correlation between ANS and vitamin/mineral absorption?

I am on the end of not being able to absorb them and am being put through the ringer with scopes.

If anyone has suggestions for test that I can ask my doctor for that would be great! Cuz I am tired of being probed....lol

Aimes, as for your symptoms, maybe they were being camouflaged by something else, and the stress your body (and mind) were under from the surgery triggered some wacky side effects. Keep me posted on how you are doing : )

I am so glad you asked this question, I am having another procedure done and I am being put out as well.

Thanks for asking.

Hope yours goes smoothly tomorrow, keep us posted : )

Hi there,

I am in Ottawa. Not a lot of help over this way.....lol. Actually, I have a great group of doctors here and I am currently awaiting my referral to Hamilton.

I would ask your docs, if they could refer you to Dr.Morillo or Dr.Guzman at McMaster University.

You can check on the main Page for doctor list and they will be there.

I have heard nothing but great reviews on them.

Message me if ever you need to chat.

As I was once told by a crappy doctor I am new as well to all this crazy, so enjoy the ride

Take Care

Tara