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TheLivingDead

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Everything posted by TheLivingDead

  1. its a relief to know that others are experiencing the same so that it can give me alittle insight. ive had so many other classic pots symptoms and most have gone over the past three years. only weakness and this dumb mindedness seem to linger. so i guess ill take another year to wait out this part
  2. appreciate the input. mine has been bad for about a month and a half. i say the wrong word or just mangle the word as it comes out atleast 10-20 times a day. i cant sing songs that ive known for years i mess up so many words. when i read a book out loud its like im retarded. i say words that are not there i miss words that are there. im guessing this is just one more pots symptom to add to my resume but thanks for the imput it gives me alittle more piece of mind
  3. has anyone had issues with messing words up alot? writing seems to be a mess at times also coordantion with things that i always do seems to vary. is this familiar to anyone?
  4. ive done research and most of it leads me to mito but i dont have alot of what is being described. ive had pots for 2.5 years. there had been times when i was very weak but i still work...manual labor and hard most days without much more tiredness than a usual hard days work, but other days im really beat and i daze off when i get home and sit. its like i go into stand-by mode. i did have alot of the basic test done about 2 years ago when i was diagnosed. i dont have ins. now so im outta luck with further testing for mito. i guess im wondering if there is anyway to tell if i may have this without these test. not to know that i have it but to steer me down that path of mabey mito is it. as i said i do have alot of the disauto. problems but alot of the things listed by the people with mito i dont have. mabey its just a matter of time for them to develop further or is it always a back and forth kinda thing. sorry if im not explaining well im kinda foggy at the moment.
  5. it helped with the pots symptoms but it was giving me the typical pot smoker symptoms. lack of ambition, laziness, coughing, ect.....i didnt want to go to work and come home and have my day dissapear till the next day of work. i was tired of that i wanted to feel life again. now i really feel it.
  6. so im going on three years of having issues 2 years dx with pots. i decided to smoke marijauana for most of the last year because, with me, it help alot of my problems to the point of not having any signs of illness for 5-6 months. i decided to stop smoking and i was good for a month or more. then one day a week ago i got a small case of vertigo with some hot flashes........it was gone in about an hour. no big deal i thought. 4 days later a few hours after i wake up i have severe vertigo for hours and it would not go away. vertigo is a symptom i had never had prior. so i go to the hospital and they gave me this medication for the vertigo and nausea. i told them since pots i have a very strong sensitivity to many medications........they said you should be fine.........5 mins into im on the verge of a *seizure. severe hot flashes nerves wanting to jump outta my skin, loosing conciousness. that was about a week ago. ever since the vertigo day it seems all of my old symptoms have returned. dizzy spells, heat intollerance, pins and needles, balance issues, numb arms, all over body pains that seem to move randomly around, palipatations, hot flashes, ect...... im wondering if pots has a way of going away long term and returning or if it was just playing a trick on me just to come back and ruin my life again. my days have crappy parts and then parts of the day i feel perfectly fine. i just started getting to the point of being able to look down the road at my future instead of just looking for the end of the day. im not sure what the trigger my have been but here i am again....or should i say still.
  7. yeah i dont have bad episodes anymore (for now anyways) what ive been told is that if you have pots for no real specific reason(i guess one they cant find) that it usually goes away in 2-5 years in about 50 percent of people with this problem. im working on 2 years and ive gotten tremendously better since the first year. so mabey it will just take more time for myself. its odd i dont sweat alot but one thing that all of my doctors have asked me about was if i sweat alot. hhmmm mabey you should mention that to your doc's.
  8. yeah i get the drunk feeling. feeling off balance and my vision is all sketchy. but the pins and needles doesnt necessarily go hand in hand with the drunk feeling.
  9. so i had a very bad episode in july and august. then my symptoms seemed to disapear, for the most part. i felt 80 percent better than i have the year and a half prior to july. its now january but starting in december i started getting bad heat intolerance. ive had this before but now it comes with pins and needles all over my body and they are very strong. this hadnt happened before. i was wondering if this sensation is just another day at the POTS academy or if i should show extra concern. anyone have this?
  10. well as the title says muscle weakness. my question is does yours just FEEL like weakness or is it physical weakness, for example were its hard to clench your fist tight or pick something up,
  11. yeah it happens after i stop working, when i come home and sit down. ill try the gatorade
  12. i started working again and its goin good. sorta. im on my feet the whole day. then come home and i seem to have vision issues. i.e. harder focusing, blurry, bright light physically hurt my eye balls. kinda weird when looking from one spot of the room to the other. it seems to drag what im seeing from the first spot to the second. does this sound familiar and or do you think it has anything to do with being on my feet alot again?
  13. the doc had to reschedule the appt. til next month. is SFN a cause for pots or just another issue being caused by what ever the main problem is? how is SFN treated and or fixed and what does it do long term to the body?
  14. does this test help? or is it ust a pointless test so they can bill your ins? im getting this test tomm. and was wondering if anyone has had this test and if it had provided any answers to your questions?
  15. where can i get a cuff? and whats a rough price?
  16. when i first got pots i could not drink anymore. but the last few months i can get drunk as all **** without much after affect......yet. this past week ive had alot of bp issues and felt like crap in general. i drank alittle last night and feel much better today. but i also drink water between drinks and alot of water after im done drinking for the night. during my tossing and turning in the night i also sit up and drink water.
  17. the warnings on this medicine are steep im worried of bad side effects. particularly the "significant raise in BP". i usually dont have alot of bp issues. it stays stable most of the time but the last week it feels (no bp monitor) like my heart pounds real hard but not fast, hot flashes and slight head aches with tight chestedness. i dont know if this is a feeling of low or high bp.? i took my bp at the pharmacy today. first reading after standing for a few min was 123/73 hr of 73 second reading after sitting for a few min was 111/71 hr of 75 to me these are normal readings. my question is with my bp appering normal, at that moment, should i take this medicine? i do know that with pots my bp can be good one moment and garbage the next, but its not usually like that for me. i dont get to see my cardio for another 6 weeks or my gp for another 4 so i was just looking for some insite from the real pots professionals.
  18. came back from the cardio. today. he was alittle familiar with pots but not that it causes so many diff. issues. the first question he asked was if i had anxiety. what a load of crap. he said to not take the bb's but to take proamatine 5mg 2x a day. for six weeks to see if it helps my "episodes" from returning. has anyone taken this, proamatine?
  19. im not sure why my pcp prescribed them im sure because she didnt know much about pots and the "main" clinical issue with pots is the tachy and heart rate issues and that sort of thing. and bbs's are know to help these issues. my symptoms in general are very minor with highlighted areas of really bad times. i.e. tachy, palps, naseau, tremors, light headness, fog, gi issues, fatigue, weakness, muscle pains, heat intollerance. the typical pots things. these times last for a few weeks at a time then gone for a month or two. i can be on my feet for along time moving and working and doing things unlike most of the pots people so im not sure what is really going on. thats why im questioning the bb's. i was once prescribed florinef in the begining of my pots diagnosis but it made my throat close up so ive been dealing with this cold turkey. i have a cardio appt tomarrow so im going to run this same question by them and see what they think. hopefully they are somewhat familiar with pots.
  20. ok i have a new(my first since pots)pcp and she is not that familiar with pots but she is willing to try and help. i got refered to a cardiologist and neurologist. the doc prescribed beta blockers because it "helps" pots. but the tachy and light headedness is one of my minor symptoms and is not there that often. i also have read that people that have been on them have go through **** after they stop taking them or miss taking them. ive had pots for a year and a half. my question is should i not take them because i can handle these issues or should take them if they help other issues with pots?
  21. i was diagnosed with pots in nov of 09 after 6 months of ahole docs. anyways ive just now been refered to my first cardiologist and neurologist* since i was hospitalized and diagnosed. my question is that what do i tell them besides what i feel on a daily. i mean i dont know where to start other than my symptoms. any sugestions? mabey what i think it could be like mentioning ms, eds, mito, lyme, ect.... or will they already know where to start? or will it be like they are taking shots in the dark?
  22. since my latest "flare up" ive had several new things happen but the newest is that my legs get cold to the touch between my ankle and my knee mainly the lower half all day long. i was just wondering if this is normal for us with pots
  23. ive always gotten palps randomly since pots began, but it was a random thing. now i seem to be getting them about 30 seconds after i lay down, no matter what time of day it is. if i sit back up for a few minutes then back down its gone. any ideas why it does it only when i lay down? is it mabey because of the blood rush from my lower extremities to my heart?
  24. for the past 2 weeks when i wake up in the morning i am so sluggish i can bearly move. like my blood flow has slowed down so much that im practically dead. it takes me a few hrs to beable to move around properly. during this same 2 weeks ive had more palps, leg pain, stomach pains, tremors, breathlessness and several other things. i was wondeing if anyone else gets like this when waking up?
  25. i was just wondering if anyone else exp. this? about 2 weeks ago i started getting alot more tremors and then muscles spasms all over. this past week the tremors stayed but now when i try to pick something up or hold an arm or leg in the air it really shakes until i put it down or support it. any ideas?
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