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Everything posted by lissy

  1. Hello, Your post kinda confused me, I have been suffering for many years and my heart rate always rises upon standing, most of my episodes are not really contributed to my activity. I can go hours up right with a HR of 120's 130's and feel the same if I stayed laying most of the day...I have been evaluating my symptoms for years now and I know for sure when I lay down I am not recovering. I don't know what others will say but I can speak for myself I don't have episodes, my problem is pretty much chronic I have severe setbacks where its hard to do much of anything, and they last months and I have times I am more active which also last months but my vitals are always the same (high hr when standing) and my BP is almost always low besides certain times of my cycle or adrenaline rush.
  2. Yeah get it checked if it concerns you. But my Period makes me awful every month so it could be due to that.
  3. 130 is my average when standing/ walking for any length of time resting is - between 70-85 I had the 24hr holter and during sleep I'm at 50.
  4. I'm unsure of the specific condition but my fathers heart always races and he was on Atenolol and it stopped the tachy and he was no longer fatigue. Hope you find answers soon.
  5. The more I have dealt with this illness and read all the posts, I honestly wonder if this is just a autoimmune disease. With the flares, remissions, triggers, basically feeling that our body is fighting against itself. Has anyone been treated with steroids?Not florneif. I have a family history of autoimmune disease (Mother has blood clotting disease) I think APS Her one sister had MS Her other sister has RA Her grandfather had MS My mother and her sister with RA also have tumors going within different areas in their bodies non-cancerous. Thats all on my mothers side. My fathers side is all kinds of health issues But on his side that pertains to dys. I have a great aunt that has vasovagal syncopes and her son has it also. Sorry I always seem to get these compulsive searches going when I am feeling my worse I guess its my way to keep fighting and stay mentally strong:(
  6. When I am in a relapse/flare I am very much able to tell! I start having mysterious problems and they can lasts for days then they will disappear and something else will appear and its ongoing for months at a time usually 3-5 months for me.Then it seems like I am recovering for months almost 75% better and stay at that intill another relapse.The longest "remission time I have had was about 5 months. The longest relapse was about a year 1/2 that was in the beginning. I believe I have suffered with this since I was a teen or even before but it wasn't severe until having children. I have documentation of POTS type vitals from year 2000 so maybe mine is autoimmune...?
  7. My results from 2 days ago Iron 72 (30-160) TIBC 286.0 (228-428) Iron Sat 25% ( 20-55) UIBC 214 (110-370) Ferritin 35 (13-150) Transferrin 284 (202-336)
  8. My results were A.M serum cortisol 21.0 range (6.2-19.4) Thats what I thought about the fight or flight response also thats why it didn't concern me too much but the reason for the test was because of the fatigue, dry skin, heavy cycle, jello weakness I actually thought I was hypothyroid but I'm not so....I guess it just confuses me more I do have adrenaline rushes sometimes like having a panic attack that lasts alot longer and more intense. I guess I will find out more once I see my doctors my GP called and wants to see me next week about the potassium and I have to bring these cortisol results at that time. I just wonder if its safe to take lexapro with these elevated levels because I am at the point I have to try something, I just don't want to make things worse. Lissy
  9. Thanks for all the responses. I thought I had adrenal insufficiency, I wasn't expecting high cortisol it kinda threw me off. From what I read on-line that stress or too much of the flight or flight hormones cause high cortisol and I will admit I am very stressed out and I do have alot of physical symptoms if stress occurs some examples: When I get stressed or upset I have to urinate alot I feel my heart thump and race I can start shaking My b/p goes to normal and when its all over I am so exhausted like I have been awake for days. Typically in the morning I am very orthostatic and it feels like my brain is still asleep I don't come out of that feeling until around noon and it goes into a different mode of no physical energy but tachy isn't as noticeable even though its still there. I have been feeling awful lately with chest pains, hyperventilating, stomach problems, Jello body even my jaws. I just don't know what to do anymore. Lissy
  10. Hey all, I have been having more blood work taken recently and I have two elevated tests. Potassium A.M Cortisol My ACTH is normal... I haven't heard anything from the doc yet, just curious if this is a common finding with all the stress and sensitivity we have on our body. Cushings doesn't seem to fit "me" I am very thin with low-bp. Just like to hear any thoughts Lissy
  11. LOL, actually I have had quite an appetite myself lately and its sort of been helping me get over alot of my Food fears! I still avoid items with tree-nuts and sea-food but I guess it will take some time. I wondered if avoiding the foods were causing more of a reaction? I really miss the freedom of eating everything like I use to ! Maybe I will be able to one day soon. (You also!)
  12. I have many symptoms of hypo: And Free T3 was tested at on time when the TSH was 1.87 and the T3 was 2.52. T4 was 1.00 those were Free Hair loss and breakage Dry skin Cold extremities The memory and brain fog issues Fatigue that has been here for years and has gotten worse I have been Dxed with major depression, anxiety disorder, PTSD Chronic constipation Heavy menses These symptoms have been going on for a long time I just re- checked all my labs and the lowest TSH I found was in 2008 and it was 1.30, before that I didn't have to many issues with fatigue so I wasn't tested. I am concerned that my thyroid could be causing alot of my symptoms but the numbers do not seem high, and I even called around today to find out if the ranges have changed and do ppl get treated based on symptoms and most nurses said the same thing I am in range and everyones different....which didn't help me too much.I don't want to be treated for something I don't have but I don't want to be dismissed if it is the problem. Being online has seriously confused me about the ranges some ppl have Very High ranges and I keep thinking maybe mine is normal based on that? I also read the new range is suppose to be .3-3 and if thats the case I would be knocking on the door lol. I believe my doctor will just say that it is ok and what then? Do I just wait and see how high it can become? , I can't imagine having less energy than I do now!!! I could sleep 24hrs a day if I could. I don't know what I am gonna do.
  13. Got my results! Ok everything seems pretty much normal Potassium was slightly high. range is 3.4 - 5.1 mine was 5.2 Tsh went from 09' 1.87 10' 2.20 current 2.74 B12 was- 893 I got my results before my doc so I haven't heard anything yet... To all of the Thyroid people are my numbers still pretty normal ??? I don't really know if the #'s going up is too normal ...So much stuff online can make it more confusing. Thanks Lissy:)
  14. Sue,Glad your feeling well! I have had times with that amount taken and had to lay in the lab a few hours drinking juices they offered I had to take only 7 tubes today thank god because it was a 12 hr fast also... My thyroid is also being evaluated when I 1st got ill that was one of the 1st things I was tested for so I was looking through all my paper work a few days ago and found in 2009 my Tsh was 1.87 and 2010 it was 2.20 I will find out tomorrow what the results are. They also checked B12 Vit-D Comp-metabolic CBC Hate to say but I hope something finally shows, she said hypothyroid and anemia was great possibility.
  15. Sorry that you are having such a hard time, I am going through a major relapse and being a full-time mom, wife, and human is very overwhelming daily. Many times I thought about " if I could only get enough rest I would get better" but that never happens in my life...No-one has honestly understood how bad I feel and the most help I have received were the children being away for a week. Which that helped tremendously but I was right back to being my usual sick self within a few days once they returned home. I can't suggest med advice as I don't take any. But the relaxing aspect makes a difference at least it did to me. So I hope you find something to help you soon and maybe others with the med advice will offer more options. Take care Lissy
  16. We'll I went to another doctor....once again. After my last ER visit, it sent me yet again on another search with the abdominal pains and other symptoms. In the ER they said I had a cyst on a ovary with a possible rupture on the other causing the extreme pain. But awhile back I think I posted about having pain right beneath my left rib cage with eating. Well they didn't mention it at the ER but this new NP read my test results and said I have a small hiatal hernia! Which explains that upper pain I never knew what it was so finally I got A ANSWER lol. She trying to get me a referral to a gyn. for the other problems depending on my insurance. So hopefully I will have more answers soon. So I have a question to those with the hernia how are you doing? Did you have to have it repaired? And is it possible to be pushed back down by a chiropractor? Thanks Lissy
  17. I know the feeling of loneliness, which I have felt even without this illness but when you feel terrible day after day year after year it would really mean alot to have someone sincerely care. As someone said the strength comes from within which I have found to be true, but its a sad road.I care about all of you and your just typed words on a screen but this illness brings us together to guild, and make a difference. We are people that have been stricken with a condition that completely slows us down mentally & physically but definitely not emotionally. You have my support as much as you can receive from words on a screen, but that makes it no less. We have all taken this crazy winding path of pain and disappointment but we still open our eyes everyday. I feel what your saying because its so familiar and my only strength comes from God otherwise who knows where I'd be. I'd have more to say but my mind is doing its own thing today... Lissy
  18. Hi Leize, I'd say coping can be easy or hard depending on whats going on a that specific moment, like if I have no new problems I can manage pretty well but my body seems to have a "storm" brewing every once in awhile and it starts the process all over again. SO I don't just learn to cope with life changing illness the fear of new potential problems has to be figured into the equation... Praying is my coping
  19. I ended up going to C.C they have a program if your insurance doesn't cover it and the hospital administrator has to approve, which was a very quick process. I called Mayo they wanted 8,000 which I knew I would never have or be able to get so... Also I was a self-referral.
  20. Hi Leize Thanks for your response! No, this has never happened before thats why it made me so worried...Usually I have pain monthly in my right ovary area, I did tell my doctor and she just looked at me and said how do I know its my ovary...that is why I have to once again find a new doctor. This is getting really sad to me that all my problems get dismissed so easily.I will not just settle for no answer or dismissive looks from doctors any longer. I have been searching myself like everyone else has to do and I was thinking about the endometeriosis because I have also have the phemothoraxs happen with my cycle so its all looking like its coming together. I posted because I know alot of people on here have had alot of medical problems (hormonally, rare, and hard to diagnosis so I thought I might get lucky and get some more direction. But thank you so much even if it stumped you lol because I am also:P Lissy
  21. Hey all, I began having stomach cramps Saturday of last week, which lead to heavy straining and constipation.The next day it felt like I had a UTI or something urinating was very uncomfortable, so I began guzzling water and peeing every 15 minutes for 3 days straight so I went to the ER trying to get it taken care of before it developed into something severe.The NP was very nice and through she did a pelvic/ urine/ blood work and finally and ultrasound everything was clear besides a 2cm cyst on my left ovary, which she said its quite common around ovulation....I'm days away from my cycle) So I came on home and thought how did I have a cyst on my ovary (left) when I always have severe pain on my right pretty regularly. We'll I'm still drinking tons of water resting wondering where are all this all of the sudden urine problems coming from, then WHAM I start having pains like I'm in labor it started at 5 pm and by 9 I was hunched over crying and in fear that I was dying! I ended up back at the ER with a different doctor but lucky he was pretty through also, he re-checked all the tests from the night before and said everything was all clear but he was gonna do a CT. He found the same cyst along with a small amount of fluid in abdomen and some calcified or congested? veins in pelvis. SO the urine problem is almost better I still have this constant ache in my back which I thought was my kidneys?... The 2nd doc said possibly I had 2 cyst and one burst and caused the fluid. Or I have an overactive bladder lol ,which I definitely know if I drank as much as I'm suppose to I would live in the bathroom! But I thought thought was just part of POTS not retaining fluid right? So I guess I'd like to hear anyones thoughts I'm worried and planning to go to my GP next week. Concerned Lissy
  22. my mothers family is polish and german my fathers family is irish and indian A few people on my mothers side had MS and Rheumatoid arthritis My fathers side has genetic problems and kidney disease My mothers mother died in her 40's and was sick unless she was pregnant, she had 9 children I have tried to get more info on her exact cause of death but all I have found out is her heart overworked and she was given some type of allergy med for what they thought was an allergic reaction and she died. On my fathers side I have 2 people my great aunt and her son that have vasa-vago syndrome.( I think thats what its called) SO could I possibly link my issues to being genetic or autoimmune and if so is there a specific test to determine that?
  23. I want to say this simply: I think I had POTS or (some form of dysauto) since I was young. I hit the worse time after my last child 3 1/2 years ago, I seen a specialist and was told Meds for 6 months should send me into recovery, I have not taken any meds* I sound crazy right... My normal functioning day is wake up between 8-9 get 3 kids ready for school bathing, ironing, feeding, take them to school most of the time I'm a passenger. Then I may go to the store/errands, struggling but walking (no scooter) then pick the kids up come home prepare dinner, do homework, maybe dishes or household stuff. And last I watch T.V until about 12-1 and crash to sleep. This is my schedule now without any meds. But 3 1/2 years ago I struggled to even stand to wash the dishes( I used a elevating PC chair) I avoided the weather changes ( could never go out in 80 degrees) had to use a scooter in the stores.I have had 3 garage sales this summer and even got a tan. And I have sat in a car w/ no air on 100 degree days with a bag of ice on the back on my neck, but survived.I thought I would die! The only thing I can say is I still feel pretty awful, but I stay active and it has seemed to help over time. The only med I am considering is the SSRI all the others require so much balancing. I think recovery is possible with and without meds I think it matters how severe you are and if you know the cause. And I thank GOD I have seen improvement and I believe its all his will. Lissy
  24. Hi, I have no documented allergies besides BEE stings, but I have noticed some wacky itching without hives lately. When I have eaten Soy sauce Arby's sauce Western dressing I begin itching everywhere for about 30-45 mins no hives or swelling then it goes away???....I have been avoiding Nuts,tree nuts,certain oils in foods,seafoods, or anything I haven't tried or had in many years.Which I have a very limited selection now:( I have mentioned it to my doc but she doesn't think about of it, Hate to change docs again this will be like # 33. Lissy keep us posted on your testing;)
  25. This has been one problem that has me very concerned, I also have the forgetfulness but what about memory loss??? I can't remember alot of details from the past,so its affecting my short term and long term memory. Its 10 times worse with hormonal flucuations. I live in a small city in which I grew up, and I know where everything is located but it seems like its slightly unfamilar everytime I go anywhere... There was a very scary time while I was driving years ago( I was 24) and I forgot what side of the street to be on, or when I forgot my name in the ER. Are these problems something other than dysautonomia?
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