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lissy

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Everything posted by lissy

  1. Sneaking in on an older post.... I'm suspecting hypothyroid and curious if just TSH and T-4 would detect it? or detect something if it was autoimmune with those basic tests? Thanks so much I have a follow-up on Monday with endocrine doc and wanted to get this specif information so I don't just go into with no knowledge. I know my TSH 8 months ago was 1.87 and the endo doc was willing to treat but i was in the middle of POTS DX so I waited, so who knows what its up to now....I'll know soon Lissy
  2. How about just getting your own place near family, so you can feel comfortable taking meds and the college thing good for you to be sticking with it, I had to quit school and also many jobs due to this illness , so I'd say stick with it as long as you can. good luck Lissy
  3. Well I have been thinking that something else might be going on inside my mysterious body I have had thyroid tested a few times since I've been sick almost 2 years severely. And I went today to have another one done I'll have results Monday This fatigue is really unexplainable its everyday all day no matter how much I sleep or what activity I do, I have 2 small children so I'm always running after them so I'm not really deconditioned , maybe alittle cause I never do much walking or exercise. I don't know what it is I just keep getting a feeling something else is wrong with me. My GP is not looking into anything and I'm at a stand still all I know is one cardio said I have dysautonomia and he said I'd never get better and couldn't tell me how he came to that conclusion so I went to Cleveland clinic back in July they said based on symptoms and looking over my TTT and 24hr monitor I had POTS but needed to preform all the testing to give me a formal DX so I go back in January for the test. But reading almost everyones paragraph at the end of their posts they have many DX's of different things and they must have had some willing doctors to find out all the illness. I feel like I have to be my own doctor and find stuff with the help of the PC and go back to doctors with what I think is wrong with me its so exhausting!!! I just wish I had some simple answers. I guess thats why I come here many times a day to read how everyones feeling and what they deal with because I don't know what else to do and I don't think that all the people on Dinet have been asked research questions when we see these specialists, so really every doctor has a different set of opinions. Its like guess work no known cause no known prognosis they do what maybe 10 tests and thats it take this and see ya in 6 months its just unbelievable to me and really theres so many illness that are looked at the same way. I really just wanna know if I have another disease causing dysautonomia who is suppose to find it ???And are most people with POTS dx with 5-20 different things? Ohhhhhh I guess thats why they say very intelligent people get this because we are the ones researching everything and trying to piece it together
  4. Hi, I really knew something was wrong with me when I'd be eating and would get very faint and especially when I'd go to restaurants and I'd get this weird faint feeling along with a palpation and shortness of breath all at the same time and after dealing with it so many times. I started avoiding going out to eat and it started happening at home also and I found if I kinda lay and eat it doesn't affect me as much. From what I read its from the abdominal pooling, I don't have much of an appetite to eat six small meals a day so I eat large meals while laying and I suffer alittle a few hours after I eat but it beats the faintness for me... Lissy
  5. Thanks for responding, I hope you have some improvement very soon:)
  6. This fatigue has taken over my life is it really common for POTS PEOPLE to stay fatigue and brainfogged every minute of the day?????? I am starting to want more and more tests done to find out this problem and I need to know if I'm wasting my time looking for answers if POTS is the answer. Another thing this is like the 3rd time I asked this --------- What is a FLARE and do they happen randomly please explain please. Thanks Lissy Hope you all are enjoying your Friday night
  7. Hey all, I get about 8 to 12 hours of sleep night and get nothing from it, I feel the same if I get 4 hours. I have have a very few opportunities to sleep as much as I really wanted and it didn't help either. I also have always had a problem with waking before noon I have noticed if I get up at 8-9 I feel more alert but it quickly disappears in an hour or so. I did have a 24 hour cortisol done once , but doc said it was normal but I think maybe the saliva maybe more accurate....All I know is I NEED SOME ENERGY!!!!!!!!! Lissy
  8. WOW what a good topic I was going through old posts and found this....I have had 5 babies and 2 live with me the other 3 are with ex-husband because I could not function at all. My illness started before the 1st was born but became progressive after each child but recovered fairly until the last. My girls are 31 months and 20 months and I just have to say ohhhhhhhh boy its hard everyday I can't imagine if I had to work full-time part-time or temp I barely am able to go to the grocery store! after being chronically ill pretty much everyday and I see my children are suffering I am seeking childcare a few times a week and reaching out to local church daycares because I physically can no longer do it, I also can't afford it but I am spreading the word about my condition and hopefully I will find a blessing...who can really afford $150-200 a week on childcare if you can't even work ??? and there is not special assistance for disabled parents that need daycare I guess they think if you can't work why would you need daycare, there is programs though for you mothers that do have a job or go to college call your local workone or employment agency. Lissy
  9. BellaMia I think the person that started it was just for fun..Not totally sure..but I really think its a great idea and it could help with so many causes.
  10. I'm sorry you have this disconnected relationship with your mother . I have that with everyone in my life. Theres 2 type of people in the world ones that can have compassion, understanding,and are able to put themselves in others shoes. Or those who are not capable God didn't give everyone the capacity to treat others properly. I learned about that the hard way as a child and no matter how much it hurts and you will carry it with you forever you have to not take it personally and not allow it to change you as a person. Sometimes things happen in peoples lives and it makes them take a different view maybe this will happen with your mother I pray it does. Lissy
  11. I can never check pulse on my wrist its very weak I always check on my neck. Lissy
  12. All GREAT ideas we really should have a catalog and proceeds go to dysautonomians that need help with things such as: wheelchairs, scooters, travel expenses or discounts for hotels when we have to stay for testing, childcare or someone to do some household things we can't do ourselves ****hint hint. Maybe someone should get with me to do some brainstorming. And I'd like a CAPE no just kidding I'd like a gold necklace with the logo as a charm.
  13. Hi, I was also DX with so called Postpartum cardiomyopathy right before POTS kicked in severely. I was curious did they find the cause??? I was not checked for possible viruses at the time and they said it resolved pretty quickly during that time. I know my heart rate was lower and felt weaker maybe 65 bpm I wasn't really aware of what was going on at that time. A year later I was positive for Epstein Barr but not active. It still worries me now because I don't really know what was really going on it could have been just bradycardia after having a baby...then it turned tachy. I did have an echo and stress test during that time so maybe if I have the right doc look at it I'll have a clearer view. I have noticed during my Cycle when sitting heart seems to be slower and kinda strained and more tachy when standing. Lissy
  14. Maisie, You also described me also its the craziest feeling sometimes it happens to me even when I'm not awoken in the middle of the night. In a way I don't really know if its a surge or the feeling brings on a surge . A few times while drifting off to sleep I suddenly awaken like I wasn't breathing and it takes about 30 minutes to go back to sleep. Lissy
  15. I feel exactly that way almost all the time I gave a clear example of this once before, I can be taking a bath and totally forget did I wash my hair ...I always have to rack my brain with every memory that is stored its really scary and frustrating. It also is not as bad when I first wake up , and it gets very bad if I go outside or crowded places all the overstimulation makes me feel like an alien or something very uncomfortable and disoriented. Is this really a part of POTS or something else??? Lissy
  16. Thank you for your kind words and the ideas about reaching out. I do not have family near by and I don't really think they understand how sick I really am. I have went to daycares and they are just so expensive and I actually have a 3 year old and 2 year old so its hundreds of dollars just for a days and a few hours a week. I have asked about assistance because I do receive disability but no program exists here in Indiana unless your working or attending school. I am a believer and I don't have a regular church with *daycare so I kinda feel uncomfortable calling and telling my story and asking if they'll help. I have thought I can do this until I can get them into preschool but everyday is a BIG struggle. I guess it will all work out somehow............. Thanks again Lissy
  17. Hi, I have had alot of not stop stresses for a few years now and it doesn't help when you have this illness that makes you feel like you have no control of your health, life , and future. I'm am learning now that everything that pushes me beyond my emotional and physical limits has to go to the back burner and I have learned to separate myself from this cruel reality .Almost everyone has heard god only gives you as much as you can handle and that is so true, right when I get to my breaking point one little thing changes for the better and it gives me motivation to look forward. I think it is to make our faith in God stronger and reach for him more. Activities that help me relief stress ----A interesting movie, playing on line games, crying till I can't cry anymore, going in my kids room and playing no matter how I feel and thinking back of what it was like being a kid myself. I pray and focus on something other than myself. I fight the "why me stage" because just when you think its the worse it can possibly be your life can go from Bad to worse. . I'd give a million dollars (if I had it) to get a break from my hectic stressful sickly life.... LOL but thats not gonna happen I just have to be thankful I can be alive with the limited abilities I do have just to type laugh think half way straight and really just to wake up from the night before because the last thought on my mind was GOD I feel so awful Please let me live another day even though I know how hard its going to be . STRESS has been a big burden that I've had to work at for so long and when I first got sick I thought ohhh boy life is over I better make all the right decisions that are going to make me completely happy because the seriousness of life snuck up on me and everyday needed to be so special and memorable and I began looking into things way to much (chronically ill people have a different perspective on life) people that aren't sick really don't understand but I held everyone up to this certain expectation after I got sick like they would magically become loving, considerate,compassionate,understanding, helpful, but that was not the case . I realized even though my life changed dramatically, they weren't affected to the point of growing into exactly what I need them to be or what I thought they should be doing. This illness has shown me how selfish people really are and I didn't see that very clearly before getting sick because I involved in the functioning world. I have been a lonely person all my life and even more so after POTS. I know if I was to wake up tomorrow perfectly healthy I'd never be the same my views on our society are embarrassing. From our medical field, to our loved ones its really ashame how self absorbing people really are . I know with this DX all of you have had at least one good doctor in your life and we are actually lucky. I know this is alittle bit everywhere but I had alot on my mind today:) I have a almost 3 year old (my caregiver) she follows me around the house all day asking are you okay mommy ??? she knows I'm sick. When I take a bath since I can't shower she tries to wash my hair for me and rushs off to grab me a bottle cold water. She always says Mommy Ill always take care of you and its unbelievable to me to see such love in a small child. Whenever I'm laying feeling my worse she will come back with my BP cuff and it just really breaks my heart and I try to imagine what shes really feeling and going through having a mom that is sick. I watch her look out the window everyday and wish I could do the things with her that my mom did with me...I can't wait for that day I have so many plans and what fun we WILL have. I think about alot everyday and I don't really have anyone that really can even relate . It feels good to get this out so I guess nothings lost. Hope someone gets something out of this . Lissy
  18. Hi, To be honest I have had 5 children and I never knew what was wrong with me until I had my last and that was almost 2 years ago. I was always going to the ER and complaining of these POTS symptoms and no-one thought nothing of it. I just got All of my medical records this year and found that my heart rate and BP was a big difference with sitting and standing and know one ever said anything and that was recorded way back in "2000" anyway every pregnancy I was very dizzy and fatigue especially right after delivery.Around 5 months I had migraines with auras and lots of tingling. I had major blood loss with my 3rd and they had no idea why my uterus filled up with huge clots I was pretty sick for a few weeks then I got pregnant with 4th it was pretty much the same dizzy, headaches,tingling,hypoglycemia . Then the 5th I had extreme fatigue dizziness I'd wake up with one hand swelling had some really weird aches and pain that would last and they would do ultrasounds and things to check for blood clots but everything was always normal. I could no longer have an epidural after the 1st my BP dropped dangerously low I vomited something black and couldn't take of my baby for a month that was with my 1st. Sorry I'll get back to the 5th LOL I couldn't have the epidural so they gave some other pain med my eyes crossed I felt like I couldn't breath and not longer after I had her, the next day I was as white as a ghost very very weak and dizzy they said my iron was OK and said I'd be going home the next day well when I went home I was way toooo tired I couldn't do anything I actually moved my mattress into the kids room just to do the feeding and make sure I heard them if they needed anything I was out of it. I went from doctor to doctor trying to find out what was wrong with me and finally I demanded a echo cardiogram at a ER, They found out I had postpartum cardiomyopathy and my ef was 45% and the cardio I seen said I needed a stress test and at that time I couldn't get my heart rate up pass 130 running and luckily that resolved on its own a month later he said I couldn't take any meds at that time because my BP was too low. They told me to never have any more kids (which I wasn't going to anyway) because it would kill me. I don't know what really happend when I went to Clev.clinic they said it was unlikely that I had postpartum cardiomyopathy because I recovered so quick it may had been POTS all along and all the blood loss from 5 pregnancies just made it worse. I don't want to scare you in no way but I'd have a OB that was very experienced with this condition . Since my last pregnancy I lose my complete life I got way worse and this has been 2 years ago. I still feel the exact same as I did the day I brought her home. I pray for you to have a healthy pregnancy and that your symptoms stay at a minimum. Just remember extra fluid during labor and your hormones and blood volume is changing alot right now which affects everything. Take care Lissy
  19. Hi Tammy Almost any position affects me unless I'm laying on my side. Even if I'm sitting I don't feel that great unless I'm kinda laying also. Sitting Up straight like on a car ride or whatever gives me symptoms just not tachy.... Another thing I rarely get dizziness its more like swaying feeling. I can't lay flat on my back either I feel like I will pass out. Lissy
  20. I have conversations like that all the time... and sometimes I find myself explaining how people shouldn't take the basics for granted it gets exstausting I guess thats why i'm kind of isolated. Or when a family member calls and asks "how are you feeling?" and to myself I say this isn't going away don't you understand that! and I just end up saying Im fine.
  21. My fludrocortisone has been sitting in the med cabinet for 7 months , since I was about 18 any meds: antibiotics, Ibuprofen, anything I get instant extreme anxiety feeling heart races i shake sweat fell like I can't breath. And now I am paranoid to try anything ...anyone have suggestions??????
  22. Sorry your feeling so bad. My POTS seems to be getting worse also I don't go back to the doc intil Jan. so I guess I have to hold out for alittle while longer. Do you take any meds? I haven't tried any yet so I don't know if that will help . My opinion is this is a daily battle I have 2 small kids that I'm with 24/7 and I don't get the rest I need and I guess in a way I'm kinda lucky I'm not wheelchair bound or bed bound because I probally wouldn't be able to have my kids. I get a break maybe twice a year no family offers much help because they don't know how sick I am. I leave the house maybe twice a month compared to just at home to sleep a few years ago.....I know about the panic attacks also I've been having them since I was 18 I'm 31 now. I have read everyone symptoms and severity varied so much but we almost all have the basics. Do you have a support system? (this is my only one) I have had many days of doing nothing but cry and somehow I end up telling myself I'm lucky to be alive even though most of the time I don't feel like I am alive. I guess it may be good to talk to a counsler that deals with chronic illness it may help work through your feelings or just come here we all understand and I feel so bad for you to be dealing with this at your age hopefully things will get better and pass quickly for you. Lissy Hope this helped some way you can talk to me anytime
  23. Hi. I would like to know about these flares I hear mentioned.... I'm pretty consistently sick some days are alittle better than others and when I first got BADLY ill I had more symptoms than a week ago, a few days ago I started having those symptoms I had to begin with IS THAT A FLARE and does that mean my healing process is going to start all over again? Last week I had days that I thought I was going to be healthy again and it lasted for a week then crash!!!!! back at square one its unbelievable and I'm talking back at square one 2 years ago. Its very depressing . Another thing I posted before and no-one responded:( the more water I drink the more I urinate and the worse I feel is that because I'm losing more salt???? (not taking meds) ONE more thing is POTS secondary to another diease? Lissy
  24. I understand , but one thing you are a pretty good writer. When I read I have to read it over and over and then I actually forget what it was even about. Like the storing is not working right in my brain or something. I have also noticed the white paper and black wording seems so BOLD , don't know if that makes sense to you... I probally am having something else going on because my memories even affected when watching movies ....Who knows I get tired of even telling doctors my problems they seem to not listen anyway. Lissy
  25. This is a good topic I haven't really brought up...I have had theses symptoms for many years, and after my second child was born back in "03 I was dxed as major depressive and anxiety disorder but I had alot of these POTS symptoms that they disregarded. Anyway at that time the doc put me on Lexapro and it was like a miracle pill for the physical symptoms but I emotionally was kinda TOOO uncaring nothing could bother me if u know what I mean...I have thought about trying it again but meds scare me now with this condition I'm always cautious. But what you said makes alot of sense to me. Lissy
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