jkoconne

Hi all,

If you've read my past posts you probably know i have an odd chest pain symptom. The pain is just under my left breast and goes through to my back (almost like a pole through me). Its a stabbing pain mixed with a cramping feeling when i take a breath. It can last a few mins or hours. It makes breathing painful and its a very scary feeling considering it feels like heart pain. I've gone to the hosptial 3-5 times for it in the last year they always say its not heart related. My last visit the pain was the worst its even been and they thought it might be my lung. A week later my doc said she more so thought it was the muscles in between my ribs or my chest wall. She said the pain was chronic imflamation...this made no sense to me but she insisted!

Well becasue she assumed this I was sent to the physical medicine department at mayo. Loved my doc, he was great (Dr. Freeman). He asked for a very specific MRI that looked at where my pain is (ribs, back chest wall), my heart, and my lungs. He was very indepth.

Today I went and got my results...Everything is Normal! Good news and bad news. Good news nothing is wrong but im left with no answer as to what is causing my pain. No imflamation...no abnormalities...nothing. So he is at a loss of how to help me. He gave me topical anti inflammitory gel and sent me on my way

Does anyone expericne anything remotly similar or have advice for me. Im pretty discouraged about this specific symptom...the other syptoms are pretty stable so im thankful for that.

Im gald to hear the appointment went okay! Im so proud you could do it alone I know its a hard thing to do!

Hope you hear results soon!

Hi Giraffe/Rachel,

Thanks for pointing that out. Im concernded they are missing something but i feel like its only because in my past they missed so much that im perinod theyre doing it again. The pleurisy is gone but the other pain keeps coming and going. They are sure its inflammation...to me this makes no sense...with the pleurisy, yes that makes sense. But that has subsided and today the chest pain that comes randomly is back. when its happening the pain is always there but breathing makes it worse. Some episodes last a few min while others last hours. but they go away with no meds, just rest. So inflammation just doesnt seem to match what i feel.

Ive had a total cardiac work-up. Ekg, Echo, 24 holter monitor, 30 day event monitor and blood testing. They only thing it showed was my tachy. But nothing else wrong. My cardio doesnt think this pain is my heart, ive brought it up multiple times. He said if it comes more often or more sever and they rule out lung issues we will do another test. I cant remember what its called...but its like a catscan of your heart. He said its a lot of radiation and ive had enough of that with all my other crazy test over the years.

So right now my primary is sending me to physical medicine (this coming wed) to see if they want to do target shots...i looked into them and idk...the side effects are pretty bad and I ALWAYS get side effects! so im concerned about it

Thanks for your input! I hope your husband is fully recovered

hi there,

I've experienced similar feelings. My mom goes to all my dr appointments with me and the first time she couldnt been there I had a lot of anxiety about it. dr's tend to judge me because I have so much going on medically (symptoms and dx's). My mom was always my rock and reminded me of things I forgot to mention or stress a certain symptom/issue. So i know the anxiety/worry but I got through it and i know you can too! Its different but im sure you, like most of us, have made it through many struggles and this will be a small one if your path, hopefully.

I do recommend a list of symptoms! I now make one for every doc appointment- i put my symptoms and questions. I tend to put them in category on morning, afternoon and night. But I also make a side list of when/what makes them worse. I put it on a lined piece of paper and somewhat group things like in little sqaure in that makes sense? I have also made them in groups of body part and symptoms. So like head: sharp pain, head ache, dizzy (on the side: worse with: low fluids, standing for long amounts of time. Stomach: cramping, bloating...ect. (worse with..). Most docs find it helpful but I have had two say I was being too indepth and paranoid...I was offened! But more have found it helpful then not! I hope this helps at least a little bit!

I wish you all the best in your appointment! It will all work out

Im so very happy for you!! great news

Thank you for all your good thoughts and support. Means a lot to me! I have no idea where I got it...but then again i go to a large university and am constantly surrounded by students The odd thing is they said it usually comes with a virus but i didnt have any viral symptoms unitl TOADY! ugh yesterday made me feel like i was doing better but with more symptoms my pots symptoms are flaring up. I have a follow appointment wed.

I was suppose to have an exam tommorow and wed. I got my professor to let me make up tomorrows test due to the situation. im waiting to hear back from my other professor.

Thanks again everyone. Hoping to get better soon

Hi,

I did not read all the prior posts. My doc advised me to drink 90oz of fluid (1/3 with electrolytes and the rest water) and try to reach 10 grams of salt a day. But thats hard for me! and the fluid is on rough GI symptom days too.

The menstrual cycle questions: YES! all my symptoms are terrible right before, during and ease up 2 days after. I have been on birth control to help regulate my cycle. I use to only have one every 3-4 months to keep the flares down but then my neuro said he wasnt sure if that would actually make the times i do have it worse. So im currently on the lowest bc dose (lo loestrin) and have a period every other month.

Hope this helps, and im sorry if the people above have already given similar advice!

Hi all,

Yesterday (saturday) i woke up with chest pain and really bad tachy. My bp was normal for me. The pain i was having I have had before. Its a constant aching pain and then breathing in causes sever stabbing and cramping pain around my whole left chest area. I have been to the ER for it before thinking it was my heart but they always said it was "unexplainable"

Well as yesterday went on the pain became unbareable and worse then ever. I could barely breath...i was in tears (which didnt help the pain) and the pain was a 9 on a 10 point scale. Worst ive had other than surgery.

So i go in a say i dont think its my heart but something is seriously wrong! They finally took me seriously. listened to my lungs and said the left one didnt sound as clear as the right. All the tests came back clear but they said my inflammation tracker was high and they believe I have pleirusy...which is inflammation of the lining of my lung. When i read about it the symptoms do match but they told me they cant figure out what is currently or has caused it in the past!

Another mystery...But at least they gave me meds for relief. Im home now, with a prescription that takes the edge off but is still so painful!

Anyone else experience something like this?!

Mine has increased over time! Now it happens more often and much worse. shower/pools..so being in water makes it happen and my legs and lower arms turn purple/red

I have felt that same way. The my heart has an issue. It casues the most pain and symptoms these days and keeps getting worse. My cardiologist said if it presisted he would have me to an angiogram (spelling?) of my heart. The only reason he is currently not doing it is the large amounts of radiation the test causes. The other reason is my ekgs, ecocardiograms and haulter montior was normal (well tachy but normal beat).

Good luck!

Hi all!

I was very excited and honored to be the first to be part of the "meet the member column"! if you have any interest in reading it, I hope you do! To me all of our stories are unique!

Im excited to hear others stories and see the next column! along with all the other articles in the newsletters

Issie,

Thanks for the input! ill ask my doc about GTF Chromium

Hi Tiffany,

I have done biofeedback! It was back before I was diagnosed with POTS and for my intense GI and chest pain. I went to a doc in mayo and they hooked me up to a machine that measure my hr and breathing. We then worked with the computer to find a comfortable breating rate that would calm my hr and get my breathing to "match" it. The key my doc told me was that i need to be breathing from my abdomen not my chest when i use biofeedback.

I personally have mixed feelings about it. Dont get me wrong though, It helps me! but when i have intense stomach pain breathing with my abdomen is soooo painful. They told me no one has ever complained of that But it takes me 3-5 reps of breathing to get the pain of just starting the biofeed back to go away then start working on the origninal pain. But it does help! Espically on a bad day! after i get through the intial pain my stomach will relax and my tachy will come down.

I havent practiced enough to use it when i dont have my ipod in front of me (i have an app that helps me with the rythm of my breath i picked with my doc). Im wokring up to that but its hard. I want to use it in class and public but its hard to concentrate in class and try to remember to breath in a certain way and patten lol

I hope it helps you Keep me posted on it!

Hi all,

Thanks so much! The doc was wondering if it could be related becasue I do randomly get low readings too. The doc is going to send me to an endocrinologist (spelling?) again to make sure my hormone/chemical levels arent causing the high blood sugar. Either way Im going to a nurtitionist to help me learn how to keep it level.

Im really excited about it! Ive been to dietician at mayo but its a very general session and they give me a booklet and im on my way. This new one (not through mayo and out of pocket...but i think itll be worth it) will make meal plans with me. Specializes in people with chronic illnesses who have allergies and specific guide lines to follow. And of course deals with pre/regular diabetes. I've read great things about her while I did my research. I see her next week and am hopeful she can help me

Thank you all for your input! You're always there for me when i need some help or encouragement <3

Hi all,

its offical...im pre-diabetic. Im trying to get in touch with a great nutritionist! She called me back but i havent been able to return her call yet. Ive been in class all day.

Thanks for your input!

Have you been checked for pelvic floor dysfunction? It caused a rectal prolapse in me...im 21. The doc said its common in women who are older and have had kids. Im neither...things happen..

DADofPotsSon

Thanks for the info! I workout a min of 5 days a week and avoid all corn (syrup, starch, protine, sugar, ect) due to allergies. My doc said as for now my only change would be to reduce my carb intake. I have been looking into it but nothing drastic until i get the results of my tests. Although im starting to watch my carbs and have protein with them and my blood sugar levels are more in the prediabetic range now. but at the same time my lowest reading has been 88. My moring and night readings have been more in the high 90's.

Thanks again everyone! ill keep you posted

Thanks for the input!

sue- isnt type 1 genetic though? and it was 180 in the ER, and then today an hour after a meal (lunch) it was 185, hour later 177, hour later 120.

Then an hour before dinner was 100, hour later 119. I need to read up more but ive been putting it off until the testing is done. Im hoping things even out. Like i said, the symptoms have only been strong for about 3 weeks and im not sure if something else is causing it.

Peregrine- Interesting that people get diagnosed at thoes time in life. thanks for the info. Ive had a lot of testing done in the last 6 years and my levels have always been 'normal' so until this i didnt know 2 times i was border line not normal. I'll have to see what the tests say! but im hoping it evens out.

I know the doc said that the treatment would only be dietary changes...so that wont be too hard to change but a pain!

Its interesting you mention a low starch diet. I've read that before but it so hard for me to cut out certain foods...my diet is already so restricted!

But startching today my doc said I need to be on a low carb diet which will also cut a lot of the starch out of my diet.

Hope it helps me as much as it did you! Thanks for the info

Oh and by the way...im only 21! How could i be getting this so early??

hi, I took this med when i was younger (13-15 yrs old). I was always lowering the dose because it would knock me out! I mean 18 hrs after only 2.5mg in liquid form...my mom would wake me up to go to the bathroom, eat and drink and i'd be out again!

I later found out i had issues metabolizing it and my intense sleep was actually an over dose! who would have known?! I obviously had to stop taking it..but it didnt make my pots symptoms worse.

Hope he gets relief soon!

Hi all,

So 3 weeks ago i started having diff symptoms- blurried vision, higher than normal bp, exhaustion (worse then ever, especially after eating) and constantly needing to pee. I called my neuro and they said it was probably a flare up becasue they are all symptoms of pots. Well then i wound up in the ER a week ago and they found my blood sugar level too be diabetic high!

Today i went in for a follow up. My primary looked back at all my blood work from the past 2 years and i guess on 2 other occasions its been border line too high. Im a very thin girl so type 2 seems odd to me...and no one in my immediate or extended family has diabetes. Im a little confussed..

Friday I will go in for a A1C (average blood sugar over last 3 months) and a glucose tolerance test (blood fasting and blood 2 hours after sugar drink). My personal trainer told me to get an at home monitior to check my levels to see if its high all teh time or randomly. In the past i thought i had low blood sugar but no one ever looked into it.

I understand diabetes is controll able to i have to deal with so much medically already im kind of overwhelmed at the idea of another condition I have to monitor and get nervous of side effect on my body and such

Anyone on here have this issue before? or has diabetes?

I'll let ya know when i get the results, wont be for peobably 2 week :/

P.s. sorry for posting it in the wrong forum first

Hi!

Thank you for the advice! I dont do the wheel chair but i think i will now! It could help, especially after the flight when i feel symptomatic.

I do all of the rest! i also wear thigh high commpression and make sure im extremely hydrated...being hydrated means using the airplane bathroom alot but hey thats better then feeling worse i guess lol

I agree that even with time it doesnt get easier...but im trying to stay positvie about the things i can go to!

Thanks again

Hi all,

So my sister is getting married! Im so excited and happy for her, I love her boyfriend too! The bummer is she lives in north cali and im in AZ. Traveling is getting harder and harder for me...If i do travel I get symptomatic on the flight, and only last about 2 days on the trip then crash. Im always set back when i get home. Im in school so i cant afford to have flare up. Ive missed out on so much becasue of it and its REALLY hard. I missed out on the engagement party, a planning weekend and bridesmaid dress shopping. All these events had my mom, other sister and some of the bridesmaids there My family understands its not by choice im not coming but that doesnt make it any easier.

They try to keep me updates with pics/texts/calls which it bitter sweet! I like that they are trying to keep me involved but at the same time is hard to not be there and see how fun it is. I did get to go to the weekend she bought her wedding dress which was great! I plan on going to the bridal shower and girls weekend and the wedding! but its hard missing out on the small things/trips too...Im just a little upset over the whole thing. But its just one of the struggles POTS comes with. Choosing what is worth feeling bad for...i just wish i could do it all!!

Thanks for listening to me vent! Anyone been through something similar?

Hi all,

Ive stoped the mestinon. Feeling much better but i think the chest pain is unrelated. Of course when i called the doc they made me go to the hospital since they couldnt get me in...The hospital said my heart and chest looked good, i "wasn't in any immediate danger." I like how they always say that...it like you're okay but you might not stay okay? So unsettleing.

Anyway, They did find REALLY high blood sugar. About a week- week 1/2 ago i started randomly feeling awful and getting blurred vision, called the doc and they said it was just symptoms of pots but ive never had these symptoms before! About 2 months ago i even brought up blood sugar to my primary doc because i felt like i was having low blood sugar but she said unlikely. So now I have proof its some type of abnormal blood sugar! going in on monday for more tests and figure out the blood sugar thing