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Thank you for the replies! I do not think that I have EDS, as I really dont have other joint issues, but will ask my dr when I go back to the dr..... maybe its just bad luck after breaking them!?!?

Hello! I was diagnosed with POTS OCT 05 (tilt table, and several other autonomic tests) I then began treatment- gabapentin, was on flornif, midodrine and mestotin, all of witch I am now off of. The ONLY thing i take is basic vitamins, calcium, and melatonin to help me sleep at night. In april 08 I went to a new dr (I moved) and he sent me for another tilt table- that revealed I dont have POTS anymore.... or the bp stuff like i used too. I do still have alot of the symptoms I have always had (extreme fatigue, muscle aches and weakness, occasional headaches, and lightheadedness ect..... typical POTS stuff! I am doing SOO much better than I was 3 years ago, I ride 2 horses everyday, I go walk 20 mins a day, go to the gym 40 mins daily, and live a prety 'normal' life, I do still take naps alot, and have to be really careful not to overdo it- I certainly am not living the life I used too... but am doing so much better than I was, and great for a POTS patient!! Am just wondering, I know most of you have NOT improved over time, but for those that you have, if this is sorta 'normal' to slowly lose some of the symptoms and start to feel a bit better.....my old dr told me that MAYBE I would get better over the years if i changed my life - in 5-7 years.... well we are only at 3- but there is some improvement...... any thoughts?!!?? Take care!

Hello! I broke my right ankle last feb (o7) I actually walked around with it broke for 3 weeks..... finally hurt alot and was getting worse, so i went it (i could walk ect the whole time...) after 2 sets of x-rays and an mri, it revealed a fracture in 2 places..... 2 weeks later I fell on the crutches and broke the other (left) foot. I was in a hard cast on the right ankle, and and air cast for the left foot. I followed the drs orders, and did go to PT a few times but we didnt do much, so dr said just quit.... well still the ankle was pretty sore, so in august we did a cortisone injection, after about a week, it was starting to feel better....... then this past feb, a year later, my right ankle got really bad again, went in and had it x-rayed and mri'ed- to find out that the ligaments were sprained, I guess I sort of roll my ankles when I walk, and eventually i am gonna stretch them so much I'll need surgery...... I now have custom made ankle braces that I wear daily after riding my horses, I walk and go to the gym and daily work in them...... seemed to be helping, then 3 weeks ago, the right foot ( I never had probs with..) started acting up, went in, another cortisone injection, after another week, started to feel better, I still have some minor pain, but improved alot. Now today I have started having Left foot pain, I am thinking its from compensating for such a long time........ but I am wondering, if my POTS (dx 2005) has anything to do with them giving me so many problems, and not healing correctly.... I sorta asked the ankle dr, if this was 'normal'- he siad not really.... but blames it on me riding horses.... but I am only 21, take daily calcium supplement........ just seems odd to be having all these probs.......... any feedback is welcome and appreciated!! Take CARE!

Just started seeing Dr. Salgado at the Cleveland Clinic, Weston, near Ft. Lauderdale. Not sure how far that if from you, but very nice, patient dr... ive been thru 3 in like 2 months, but he is at least willing to help and listen... i was dx 3 y. ago, so i just need some one to keep an eye on me... pt me if you have more questions! good luck!

Sarah, Thank you for your response. Yes, I did have a sleep study that was borderline- like EVERY other test of mine!!! The dr that wrote the report put a few notes for my dr to check for narcolepsy and also maybe try provigal. My specialist decided to send me to the dr that wrote the report as he deals with really strange things. I believe that my sleep problems are probably because of the POTS... it takes me about an hour to hour and a 1/2 to get to sleep at night- i read/ watch tv till I cant keep my eyes open- turn out the light, and 3 mins later im 'AWAKE' my brain is going in a million directions, I also was waking in the middle of the night..... for the past 6 months I have been takin 5 mg of melatonin- it helps me a bit, at least when I get to the point of being so so tired, I turn out the light, and fall asleep. Of course during the day, even with 8hr + sleep, I am exhausted- have a hard time doing a 1/2 days work, and take naps.... I dont believe i have narcolepsy either, but I know that they give the provigal for that..... I would love if something would help my energy level!! Thanks!

Hello, A sleep dr that I was seeing, had mentioned maybe try provigal for myendless fatigue. Has anyone tried it? If so, do you also have narcolepsy? Does it affect your autonomic stuff at all? Any thoughts are appreciated! Hope you all are feeling ok...

I just got a letter saying my dr will be moving out of state- Ohio, LUCKY you! So, being that I am living in fl and not wi anyhow- i need to find a newdr- and want to find one in fl. have had pots 2 years, and it seemsto being doingvery well, but still need reg appt. i live in the west palm beach area (miami, ft lauderdale- very south) any one able to suggest a dr? OR a dr in wi? THANKS!

well i went to the open walk in health center today.... got tested for the flu- i dont have it! i should be happy.... but this more than likely means pots flare up! the dr was very nice and said he had never heard of it- but went online and looked it over briefly- he referred me to the cleveland clinic down here in fl- he felt that was the best, and prob only place in the area to get help with the pots issues... i will be calling my dr tommorow to ask about the mestiton- hopefully that is what is causing this- and not another chapter of pots! thanks for the advice. hope u all are feeling energized today!

thank you for the reply! fortunatly i am not in my home state of Wi, but rather Fl! i do go everyday to the barn to see my horse- and we sort of 'walk' around- he is suppose to be eating the grass.... so that is my 'excercise' for the day! but after that i am beat! and i dont think it helps now that the weather is getting really warm here- 88+ humidity.... i think that takes a toll too...... maybe next year i should get a flu shot?!

i have been in bed for the past 8 days- sick with what seems like the flu, sore throat(tho, in the past 3 days has gone away), pounding ears (comes and goes), my stomach feels funky, on and off ever, and my bones/muscles/joints ACHE!! just going to sit down on the toilet and getting back up- my legs shake! i have been good about resting, attempting to drink alot of fluids, and have been taking tylenol religiously. i take gabapentin, midodrine, nexium, and i started taking mestiton at the begining of may.... so there are not alot of meds i can take with all the ones i already do! does anyone have any suggestions on what i should do- i sleep as much as possiable- but one can only sleep so much!! and my back is getting sore from being in bed! anyhow- any help would be appreciated!! thanks~ and the best to all of you~

Are there any protein PILLS/Tablets that you can take? I am a veg. and the protein thing does bother me- as i dont consume alot from anywhere!! The past year I started the whole protein shakes- and that was going well until the rumination started. now they dont stay down- so i have stopped. i really want to take something to give me more energy- i am SO fatigued, and i know that protein has other benifits too. feel free to pm me. thanks!!

dizzy, thanks for repling. i am really glad to hear what you didnt want to hear! I have never told her to get over it ect.... but it is good to know what sends those w/ depression crawling in there skin!! I try and think of things that i wouldnt want to hear from a pots stand point..... but depression is a little different! I can only imagine how AWFUL it is- and i truly believe that it is an illness- just like pots, cancer, lupus ect- its not that you are imagining things at all! Again- thanks for the reply. and i will do my best to listen to what she has to say- altho all she does is hang out or complain that the trailer is messy- hey this pots body only works so fast- and im trying! I wish there was a fairy that could come in and take care of it for me!

Ernie, I am sorry for not being clearer- I was in my 'down time'- and feeling a bit potsy- hence the endless post!!! I do NOT have depression- my mother does. I am just looking for help, or input on how to deal with ehr while i am with her- she is with me in fl for aweek- then goes back up north but i was just looking for insight- from those with it, or those that have family ect that do! Thanks!

Hello, If this is in the wrong 'area', i apologize! I have POTS- but NEVER a day in my life have i felt depressed. However, depression runs in the family on my moms side. And she is depressed- she is weird it goes in spurts- i guess like everyone. Well she has admitted the problem- but is still aprehensive about it- and she has started meds again- she went off when she was feeling 'good'- i know that is very common to! My question is- how do i deal with it? I just got the ok from the dr to go to fl to train for the winter- so she drove me down. well her plan was to get me organized ect... ya well since she has been here she has slept 3/4 of the day yesterday- and all day today- its now 1 pm- she normally gets up at 7! SO this is NOT her- now we have had a lot of stressful things happen since arriving (our water pump broke on the trailer, she hit a low hanging tree and took off the trailers awning... the list goes on- and i know stress is not good for depression either) she is now telling me that her whole body hurts- her bones and neck- ans she had hot flashes yesterday- so maybe the flu? I dont really know if she is just saying this- or if she relaly does. Now having her here is a bit tuff on me- im battling the pots, trying to get organized and unpacked- and she doesnt make it easier- she sorta drags me down! So- how do i deal/ treat her? Do I insist she comes to dinner with me(she says she'll go- but doesnt want to- so i just get carry out forher), or go shopping- all of this i am capeable of doing- butsometimes it would just be easier if she wasnt around- i feel like im doingmore babysitting! Now- i dontmean to complain- cuase she is great- but i just dont know how to handle the depression- i try to suport her- but its tuff! Im sorry to rattle on about everything- but just wanted to give you a better insight- so any suggestions appreciated! Hope you all are feeling as well as possiable!!

Welcome! You found the right place! It is a great place to find info and get support. I can understand,along with everyone i'm sure!, what you are going thru, with lack of support! They try- but forget! We live everyday and every minute sick- while they sometimes forget- and they dont really know what its like- my all time favorite is when someone says, 'oh ya, i get really dizzy when I stand up too', or Im tired and my body hurts too! I dont get offended by it, cause the are TRYING - but its like please- dont say anything! Well I apologize for the long rant- but I think you will be VERY happy in what you find at this site! Best of Luck to you!

I had the flu about 2 months ago- right before i went on midodrine. the dr gave me a decongestant- prescription pill to take as needed. well now i have the same symptoms- and i am on the midodrine- and there is a warning not to take a dc w/ the mid. I asked the pharmasitst and he said it wasnt safe to take and said just take tylenol. but it isnt seeming to help! Any suggestions on what to do or take? I have been drinking lots of gatorade. and trying to rest. of course this had to happen on the weekend when i cant call the dr and ask! Thanks in advance!

Melissa, thanks for the reply- i am glad im not just so brain dead that i didnt notice anything when i did a search on this site and also on google. there isnt a whole lot out there.... so guess i'll just have to be patient! Thank you!

I gained over 20 lbs last summer when i got sick- i think lack of excercise- it was cut in 1/2. i was just so weak and fatigued. i was on gababpentin since being dx, and this summer added midodrine, florinef, and nexium. i have tried to get it off. and i have lost about 10lbs- but i think its more from my reergatation problem. ****, its ok- ive at least lost some weight out of it!! but i understand how frustrating it is gaining weight- and i am sure it si just as hard for the ppl that keep losing! but meds can really change your weight- even if u dont change anything else. Good Luck!

Thank you future hope! I will have to check it out! Anything that has any info on it is appreciated! Take Care

Hello, Well I am not for positive, but 99.9% sure that my dr has dx me with rumination syndrome... he left me a message, and of course it was on my cell so a bit cracky- but the def. of rumination syndrome is exactly what i a have. I am wondering if anyone has it, or knows someone that does. is this common in POTS patients? I have tried 'researching' it online, however i am not finding much info on it. What are the treatment options? At one point my dr had mentioned surgery to tighten the LES (lower esophgeal sprinchter). Howevever, I am not sure if he was reffering to the surgery if it was the rumination syndrome, or something else.... I have been dealing with this with the dr for 3 months- so I dont remember everything he told me 3 months ago, and I will be going to see him next friday, but i have a thing with waiting! I want to get as much info as possaible! Thanks for any help! Jess

Julie! Thank you for the reply. I talked to a nurse friend, and that IS the word i was misunderstanding as those are my exact symtoms. so i believe that rumination syndrome is what i may have..... without talking to the dr of course! Thanks! Jess

so i had a manometry study done yesterday, and ate during the test so I would regeragate. i did a little- but its hard having a tube down ur nose! nurse felt that it looked 'normal'- but i never take there word, they know alot, but still, im paying the DR big bucks- so i always take his word. Anyhow, he called today - and i was working so he left a message. on the message he said that they found something and he wants to discuss it with me. he said something about it being classic, and also i though the word he used- he said 'its called roomatation'. But on a cell phone- words are crackly. so i called the office and talked to nurse- i asked her she said she didnt know anything about it... and scheduled a consultaion with him next week. I know have to wait in anticipation for a week! hard for me to do! i have tried to look stuff up on line.. but its har when you really dont know what ur looking up. i have had the barium swallow (shoed some dysmotilty) and also have had a scope (esophagitis and GERD) and stomach empty and that was normal........... so does ANYONE have ANY idea of what this could be? Aside from the fact that I need to have more patience! thanks !!

HI! when you wake up do your legs ever hurt at all? or just have a dull, heavy, throbing, or other sort of discomfort or annoyance? i used to sleep thru the night without a problem- but this summer i started having problems and was diagnosed with Restless Leg Syndrome- the 'pain' goes away when i get up and move around- it causes me to wake up alot and feel uncomftorable. i just take a little higher dose of my nueronton at night- that i am on for nerve pain- havnt really been on it long enought to say how well it works...... but just a thought- IF you do find that ur legs hurt at night. Good luck!

Hi! I used to have the drunk feeling 85% of the time- now i would say 45% of the time- but i have been treated for POTS for a year now. It is increasingly worse when I dont get enoguht sleep, get up 2 hrs earlier then normal for somthing out of the 'ordinary', and when I am just down right beat. I totally know the 'head dropping' thing- the elevator was a good way to describe it! I dont get that as frequently either- but it is a very odd sensation. I dont have much advice for either of your symptoms- but i do know that it has gotten alot better with treatment- so dont let your drs think your off the wall (oh, I have tons of bruises from banging into things when i walk and loos my balance) with what you are saying- your symptoms are real and are happening- and they need to be adressed! good luck!!

My best friend has had fibromyalsia for the past 3 years- she also has a really hard time sleeping at nite- so she takes Ambien- at nite, and then during the day she is exhausted. She has had some sleep studies done, with nothing. She has had some tests done to check her heart as well. She doesnt have the finances, and her insurance isnt very good at the moment, so she isnt doing much about seeing other drs ect. I have seen that some ofyou have fibro along with all of your other POTS and autonomic issues, I am just wondering if there is anything that you have found that helps with ur fibro. I am sure that the 'other' issues are far worse, and the fibro is a 'smaller' symptom, but if there is anything that you have found to help, please share! Or PM me THANKS! for any help, we both appreicate it! She is in her first year of college, but with any illness, she is having a hard time keeping the energy level up to do it all! I give her credit for going and trying, I dont think my pots would allow me to go at this point in time!!