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Everything posted by lissy

  1. All 5 of my children were between 6-7.5 lbs. POTS got worse with every one towards end and after, recovered up until the last child born.
  2. Hey all, I have been looking into home health services after my upcoming surgery and I have Medicaid, so I was wondering if any of you have gotten that type of service? I was reading about the services being available for people with medical and mental conditions ( home health nurses/ companions/ people that come in and do the daily duties you cannot perform). It made me think maybe this would be useful to some of us that really need it. Hopefully I will be eligible because I have no one in my family that can come help me after surgery... Lissy
  3. Thanks Kayjay I tried to message you and says you can't accept messages.
  4. Hey all, Awhile back I posted about abdominal pains/ cysts on ovary and this weird lung,chest pain with my cycle. Well guess what a recent ultrasound discovered blood in my ovary and elevated c125 only 45 but still doctor said cancer is not likely the problem but endometerosis is!!!! Finally a answer to my menses problems. Now I'm worried about the upcoming surgery, I have never had surgery and with the POTS problems it worries me more so suggestions greatly appreciated. I do have an appointment with my cardio on Monday so I'm sure he'll have some advice for me but to those that have had surgery and hysterectomy's after having this condition I'd love to hear from you. Has anyone gotten better or relief from hyster or ovary removal? Thanks, Lissy
  5. The hardest thing for me to deal with is; no-one believing how bad I feel and that everything I do is a challenge. I guess I'm lacking encouragement and acknowledgement of the tasks I can accomplish even if I am only able to do it because of pure mental determination. Also with most of my time I am sitting and thinking about (If I was healthy) what would life be like....sometimes it makes me happy and really feel like I will have a chance to truly LIVE again:) and sometimes it makes me so sad.
  6. Sorry about what you and your family are experiencing, I believe most of us have been there at one time or another. I couldn't read all the posts having a bad day sorry let me apologize if I repeat what anyone else has said. Your husband is doing what he is suppose to and his worries and fears are normal, but voicing the negative outcome (what could happen) is not too healthy for you or him the counseling is a good idea. If you and your husband attend a church or have religious views, it might be helpful to consult with a counselor within that faith. As for the working can he work from home? At least till you become more stable? I wish you both strength and pray that you see improvement soon:)
  7. I have had this probally all my life started having many symptoms at age 18 was very functional (just dizzy,hot flashes when I stood or walked along time) anxiety like symptoms, had children and , not severe enough to be bedbound but pretty close.Gradually have had alot of improvements I would say I am 65%. So I'd say when it began at 18 I was 90% good At 29 I'd say 30% and currently 65-70%. The more active I am the healthier I become, along with avoiding stress, eating regularly. Sorry I should also add I have always had pretty low blood pressure but just recently like this past month my blood pressure has stabalized....
  8. I have depersonalization/GAD/Major depression, and I have experienced what your speaking of. Its totally different than a mental issue I can recall two times of it being severe enough to really freak me out. And the 1st time it happened I also had a migraine with aura (I felt dizzy,tingling,then the aura came, I was pregnant with my 1st child and ended up going to the ER by time I got to the Desk to check in to sign papers they handed me I forgot my name. The second time was when I was pregnant with my second and was driving down a familiar road and actually forgot what side of the road to drive on. These 2 episodes happened 10 & 8 years ago, but I still think about it...I have have many MRI's and other test throughout this whole process and no-ones ever said anything so I guess its nothing majorly wrong. Maybe a crazy migraine without the pain??? Maybe mini-strokes???
  9. I get them easy all seasons. I remember riding in a car in 100 degree temp with the hot air blowing in on me and I had goosebumps! I showed my husband and he was shocked and said thats weird...
  10. Well I just came from the ER today, I have been having more chest pains this month and this afternoon I had a pain go straight across my chest and cause tighten in my left shoulder and neck....They did a EKG gave me a small amount of fluid and did an xray. After a few hours my tachy while lying down went back to normal and they also gave me 4 chewable aspirin and said just see my cardio (which I have a appointment in 2 1/2 weeks. The chest pain is so scary! I wish I truly knew nothing was wrong with my heart I would feel more comfortable. Anyway I'm completely exhausted and I guess I will continue to take this aspirin once a day until my appointment.
  11. LOL my kids got a playstation for Xmas and I remember my good'ol teen years of playing myself (secretly I was hooked on adventure games) SO I decided hey it might give me something to enjoy while laying and sitting all the time right....Well I was dead wrong!!!!! I begin playing and everytime I fall off of something or get killed my heart jumps, after playing for about an hour my hands are sooo sweaty. I start thinking its just a coincidence but the next day I try again by that time I have invested alot of time into this game I'm trying to beat it, I began having the same symptoms but worse I start having more palps and scary chest pain! After 3 days of this I finally quit playing! SO it is some weird stimulation that affects me and action packed movies do the same to me.
  12. In response to the feeling better at night, I also feel that. The only thing I have to really add is my cortisol is high in the morning which may cause the adrenaline to start becoming wacky which makes me feel worse earlier and it declines throughout the day feeling better at night?....Is there any study or research on this someone could add? SO yes working nights would be possible if sitting, to me unless I was feeling too awful to be anywhere. Also I can add if I fall asleep at midnight and wake up any time before 10 I feel so sick, but when I use to be able to sleep until 11-1 I felt somewhat normal. But I can't do that having children to care for.
  13. I have been through the stages multiply times and I have this voice is the back of my head: I will be healthy ,I will have a normal life. I cannot accept this illness is that considered denial? I don't know, I have heard if you believe something and can visualize it , it can happen:) I guess we will see. Lissy:)
  14. I believe this is common with us...I haven't found the true technical reason and when I first got very ill I could have bet a million dollars my hormones were making me ill. But after having hormones tested over and over they are always at the right level. I have been told some BC can stop your cycle and would be a good option for some. I have been told anti-depressants can make the symptoms less. And also if you are on florinef you can increase the dose during your cycle. I also get very ill with my cycle a week before (chest pains, very very dizzy,and I could almost sleep 24/7) by time my cycle comes its like thank god I thought something else was wrong! During I am extremely drained and afterwards its RECOVERY * like I just went through something major. I have explained this many times and no-one seems like its a big deal, but it truly is. I wish we could find out what is really causing this problem.
  15. It was June 2008 I had a yard sale,I went in the house and started relaxing I felt my heart start racing, shortness of breath, and very panicky, I told my husband to call 911. I was so thirsty in the ER they wouldn't give me anything to drink for 8 hours they finally sent me home with no answers. Haven't been the same since. Had slight symptoms for many years prior to the debilitating state. In March of that year I had a baby and it seemed with every menses I got sicker and sicker until it wasn't illness with just my cycle it was illness everyday.
  16. Hey all, Happy holidays:) Well for the past week my B/P has became completely normal, H/R is still high upon standing and waking but my blood pressure being normal is quite a suprise! I have had more chest pains,heart palps, and panic???I do have an appointment with my cardio in a few weeks for my concerns with this chest pain hopefully it will not be anything new. But just wanted to update, hope everyone is doing well in this busy time of season and with all the weather changes. Have a Happy New Year
  17. I have 5 children, Symptoms began prior to having children and got worse with every pregnancy. If I would have know what was wrong with me before having children I may have not decided to have children.90% My doctors tell me now its absolutely dangerous for my heart to attempt to have another baby, not that I want anymore...but with the last delivery my heart was only 40% EF and I have been severely ill ever since.( will be 4 years in March) I guess its all about what your wiling to risk or chance. It could be perfectly fine...or not, only God knows. I feel guilty about all the normal things I'd like to do with my children and cannot. I worry all the time if they will also get this later in life. I have constant anxiety with the fear of dying and them being without a mother. The responsibility of being a parent never changes no matter how bad or sick you feel so depending on your individual situation let that determine your choice. I wish you the best in whatever you decide and pray for comfort in your choice.
  18. Last night I was under extreme stress (which I have been under many times throughout my life), maybe someone could read this and maybe get a "clue" of my cause or familiarize with this major problem of having dysautonomia and dealing with stress. First I will say when I was 18, I stayed up for a few days crying, not eating well, very emotionally unhappy on the third day the reason for these feeling came home and I had a major argument, and I began showing some sort of dysfunction with out of control trembling for hours. I went to the ER for the 1st time pretty much in my life, I thought I had MS or something the Dr. ran tests and send me home instructed to take 1/2 a zanax and was told it was a panic attack. I was 18 and I'm now 33. Anyway last night I am once again under extreme stress my body gets weak I start getting pains in various places (chest, muscles tightening) starts to hurt from deep breathing, the more I cry the weaker I become mentally and physically. About an hour into this madness I start to tremble shaking from my feet to my neck. It last about 40 minutes during all this I decide to keep track of my vitals.... Before getting angry and emotional 90/60 Hr sitting 89 After 120/80 Hr sitting 127 Trembling 130/80 Hr laying 110 After my system calmed down 99/58 Hr laying 80 With all this, I began to think maybe I was triggered by stress all along, have I been set off balanced within from emotional trauma, is that where mine began and having baby after baby it just added physical stress on top of it. I have been through alot, every form of abuse and I have found that I am more "emotional" than the average person. I deeply feel everything I have alot of compassion for life in general and things tend to bother me very easily. An example: when I have to confront anything in life my heart starts to race and I get hot and dizzy even if its something exciting. I can no longer handle any stress that includes kids just being Too loud... Can mental health cause autonomic dysfunction? There are no ways to measure the brain chemicals at this point, alot of people are prescribed antidepressants and anti-anxiety medications based on symptoms not blood tests.But what if some of us are actually experiencing a true chemical imbalance. It seems logical its pretty much the only thing that cannot be tested. I understand many on here have found their cause, in which there is a list of possible causes that are so random maybe one day a un-named mental health disease will be added. And by no means am I saying that our illness is not valid or physical, even brain chemicals are physical. With all that being said I still haven't started any meds yet * lol to myself...lexapro has been calling my name for awhile now hopefully I build the courage and release my fears to God . Brainfog lifted for the moment:)
  19. Wow lexapro is a different price than where I am..I mean its expensive here also, but its $100 and I do have a suggestion, are there nearby mental health counseling in your area that have a sliding fee scale? Places like that actually provide the meds for free.Hope that helps
  20. Curious to know is it still going well with the Lexapro users???? I remember posting about taking it 8 years ago, and at that time I had alot of POTS symptoms and I went from laying on the couch most of the day to living a normal life and going from 86 lbs to 100 lbs. I thought it was a miracle drug I took it for 3 months and became pregnant and had to quit at that time. I can only say after taking it for a few days it made everything hilarious kind of like a mania feeling it lasted just one day. I was on 20mg at that time. I have been wanting to try it again so bad! But I have the med phobia and have been trying to work through it because I just know it will change my life once again...
  21. I agree with Juliph85, the only way I can tell the difference is how long they last and if I can relax myself out of it, with the adrenal rush I have no choice or control over it...I have also had an endocrine workup and everything is normal.
  22. When I 1st wake up normally 9 am if before that I feel like a nonhuman zombie unable to mentally focus on anything, and my heart rate is near 100 laying down and BP is "normal numbers" but I feel the worst the more normal they are...As soon as I stand it feels like I am internally exercising heart is racing, I began to get slightly dizzy my BP drops from 100/75 to 90/60 and sometimes depending on what I have to do like make breakfast or wash dishes I get some slight chest pain, I have pooling in my legs and arms . After about 1 hour I have to sit down or lay down for about then its time to eat. I also do not feel to much energy until afternoon it comes in spurts.By 5 pm I feel like its 2 am, but I don't go to sleep till midnight.
  23. Sorry, and hope she gets well soon! I have had many little collapses never had to have a tube put in thank god. Mine are involving my menstrual cycle, so I was wondering if this could be a possibly in her case also? If so, there are some rare cases of endometeriosis that can cause pheumothoraxes. I'll be praying for her & your family.
  24. Hey all, I need to color my hair SO bad its been years ! I have been avoiding chemicals because whenever I color I get panicky, tachy, dizzy, and head and throat tightness....Never a rash or swelling, or even burning. I am getting more and more little gray hairs popping up everywhere and my hair is naturally dark brown. I thought about getting highlights since it prevents it from going on the scalp but bleaching would only damage my thinning breaking hair. I am curious is what I described an allergic reaction? Or is it something else? Sincerely, Desperately Needing Hair Color (LOL)
  25. Elevators and escalators hmmm... well they are a big problem for me as well luckily I don't have to use them to often. As soon as I get off its like being on a rocking boat or floating I usually have to grab anyone I'm with, or an object nearby and it passes in a few minutes. Going down is not as bad. So maybe its gravity the slight change in pressure we feel that cause the off balance sensation. What about the eye to brain connection with movement because it happens also when I drive and have to focus on the surroundings and the vehicle moving at the same time.Any new information would be great.
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