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Everything posted by lissy

  1. This is pretty much my life everyday for years now! ....Other than just going with it, laying down in a relaxed state helps I seem to have better conversations that way:P Kind of makes me wonder if dopamine is involved since it is like a drunk or buzzed feeling that never goes away.
  2. Just the symptoms without the vitals sound like a vitamin deficiency or neuropathy???....possible arthritis
  3. Since I have been suffering for the past almost 5 years now ,but had signs of a condition for the past 15 years I've had many ups and downs. I constantly search for more answers I have never had a doctor with a plan to find out the possible cause, I always have to suggest testing for random causes and that gets pretty frustrating and that leads me to give up and take a break from doctors....I recently got approved for disability Medicaid so I no longer require referrals which will be more helpful since the referral process takes so much time and it takes away the limited doctor selection. So maybe now I can find some more answers I now realize that if I ever get better its up to my higher power, I also realize that I truly do suffer from major depression and anxiety disorder and that mixed with POTS is pretty confusing. I only wish that we would all wake up healed tomorrow, I don't post much anymore guess the depression had taken hold of me but I come to read here all the time one thing I know is we are some very strong individuals and pretty intelligent too!!! I just can't see us not recovering we have so much to offer , and I always think if we only get a chance it will be so wonderful. I hear alot of people on here being successful despite how they are feeling and that is great I am awaiting that day.
  4. I'm always tired no matter how many hours I sleep or naps I take, during specific times in the month I have extra fatigue and it use to corespond with my menses but I had a hyster 4 months ago but I guess I still have hormonal flucations that cause the same symptoms I had prior to surgery just without u Know.... I also need to just go on and do a sleep study, one doc gave me a referral and I never went and it did, I have very shallow breathing and pauses no snoring and I think I stop breathing...SO maybe I have sleep apnea anyone that has sleep apnea did the cpap make a big difference???
  5. Thats wonderful, not the fainting but its good to have some income while being disabled. It took about a month and I think You'll get a large backpayment:) Take care.
  6. Definitely yes my symptoms are worse since the heat came, I have been staying inside but the symptoms are still extreme! I feel like I'm back at square 1 again, last summer I was having yard sales, sun bathing, and all that wonderful stuff...But not this year:( this is 4 1/2 years of ups and downs really getting to me this time. COME ON COOL DOWN (Indiana here) 102 today:(
  7. I was able to sun-bathe, tanning bed and enjoy the sun like most, until I got sick I began getting a itchy rash from the tanning bed and thought it must be chemical related...And after that I was too ill to think about being outside, last summer I was able to sit out in the sun even got a nice tan but this year I got that itchy rash again that lasted a few days and it hasn't happened again yet. So I looked possibilities up and found Polymorphous light eruption for the itchiness and it seemed to fit my case. Now with the general unwell feeling from sunlight absolutely!!! I can't go out with sunglasses or I will battle a migraine, I also get a unreal feeling like depersonalization but its induced by outside especially when the sun is bright?.....And it goes away once I come back inside. Another thing when I became so ill I kept telling doctors "The SUN makes me so sick" Like its draining the life out of me and it was similar to menses....the exact same feelings.They just looked at me crazy!
  8. I have had that feeling for many years, at first I was treated with an antidepressant and it worked, it def got worse over the years.
  9. I have had high cortisol with A.M checks everything else was within range so they looked no further. I was thinking cushings also with your symptoms but I am no doc!
  10. About POTS: It causing more severe issues when I get older, or it being more serious than what they think presently. Other fears: Dying, med allergies, food allergies, and the biggest fear is missing out on life from being to consumed from medical issues/information/google/research journals....ect....ect...
  11. Just getting up every hour walking around your house should be helpful , the laying around for extended amount of time would contribute to deconditioning. I had major surgery recently and wasn't allowed to walk alot of lift anything or 5 lbs for 8 weeks and did just fine I just made sure to keep moving on a regular basis.
  12. I think I had one every 6 months until it reached 70 guess it depends on the cause also...I think if its a continued problem they observe every 6-12 months.
  13. I took lexapro 8 1/2 years ago before I knew what was wrong with me I went from only being able to lay on the couch and dizziness consistently to living a completely normal life with almost no symptoms except heat intolerance and standing still for too long I had what seemed to be a complete remission of my mysterious health problems for 4 years and in 3 of those years I had 3 children. I went from 10 to 20 mg and stopped in 3 months with no with-drawl, the only side-effects I had total was at day 3 euphoria that lasted maybe a day. Probally wondering why I haven't started again, I developed a med phobia due to dealing with incompetent doctors I know if I could get over this fear I have a good chance for recovery I just hope I didn't wait to long... I have heard the longer you stay on SSRI's the harder it is to get off, I suggest talking to your doctor about your options if you need to take at a different time or do something with the dosage or add something to it. Maybe you can just stop if you feel you are better and return to it if needed, All the studies I have read are researched on a short time frame they are not intended to take for years even though most are staying on them due to taking them so long they cannot tolerate the with-drawls. I did not wean I just stopped and honestly had no issues . Good Luck.
  14. I never had issues with weight gain and SSRI's, is it possible that the thyroid issue was causing the weight gain? I should include that while taking ssri's if your feeling improvement with your overall symptoms you'd naturally eat better, I definitely will be trying lexapro again because I need to calm my system and allow me to eat, down to 93lbs currently:(
  15. This is interesting I had recent surgery and they came in to give morphine post-op I asked is it common to be allergic and they said NO so I allowed them to give me some, instantly I had extreme burning that was spreading up my arm then itching and then huge welts with lines going up my arm!!!! When I first felt the burn I let the nurse know and she said oh thats normal....and then the rest started and luckily a more experienced nurse was in the room witnessing and I told her "HURRY UP AND GIVE ME Benadryl" and the nurse said YES hurry up!!!!! And can you believe I stayed totally calm and how Benadryl makes most people groggy it did nothing but stop the reaction I thought that was so weird! Anyway the more experienced nurse then called a bunch of other nurses on the floor into my room to SEE this reaction to let them know if it happens again they know what to do isn't that a shame. So no more morphine for me ever again!
  16. More severity (trembling,feeling like I'm fighting for something *my life) Can last longer than an average anxiety attack. Sorry I wanted to add this since it pertains to ANXIETY I don't know if I would definitely say Anxiety doesn't lead to POTS, it might. I know my life was full of trauma emotionally and physically since childhood a constant state of emotional turmoil, so I couldn't rule it out. And theres no medical way to take blood samples of the chemicals(speaking of neurotransmitters,serotonin,things of that nature) that are causing these dysfunctions thats why all the people with mental illness have to test so many meds before getting it right otherwise you could go to the lab and be told exactly what meds you need. I just knew that along the way of diagnosis being labeled as having Only anxiety was really ticking me off because I knew it had gone beyond just anxiety. I talked to a therapist not long ago about this topic and what she said made perfect sense to me " after dealing with stress and trauma your body either goes through the initial motions and then goes back to normal but after repeated stresses and not properly handling them the parasympathetic system and sympathetic nervous system can become intertwined and results in problems like these.... Maybe I'm totally off but it works for me:) There are many people on this site that have underlying medical conditions that dysautonomia stems from those illnesses so I am not speaking of those situations. POTS is just a BIG mystery really just look at all the possible causes. Pregnancy,autoimmune,viral, connective tissue disorders, the list goes on and on and ON can we ever get a definite straight answer from OUR top of the line specialist??? Sorry to go on alittle bit of a rant Thanks. AND BTW its 10x easier to get disability based on your "anxiety symptoms" than dysautonomia.
  17. Hello All, So I'm 4 weeks post-op from a hysterectomy (complete, 1 ovary intact) and have been suprised on how well I have done.I did have to suffer through, most of the recovery pain besides using motrin due to morphine allergy:( but I got through it!!! My POTS has so far been alot better I still have the increase in H/R while standing my B/P has been more so normal, overall I am so much better and even appear healthier:) So to the ladies that always posted about feeling worse around menses I can say I have had 2 cycles ***my working ovary****and I still have PMS symptoms,chest pains, and fatigue but its about 50% of what it was.And all the other days of the month have been wonderful, I'm still in the early stages of recovery so hopefully it just gets better and better. Surgery went well no complications doctors were fully aware of the meds to use to not cause any unstablity with POTS and I was impressed. Just trying to now figure a way to stay active while recovering to prevent any setbacks or become deconditioned. Thanks, Lissy
  18. I just had surgery this past Friday and was put under general it went just fine the anesthesiologist knew my concerns I also did a stress test prior to make sure my heart was strong enough, and they decided to use all high risk meds to prevent unnecessary complications. One really weird thing now is my B/P is staying low and my heart rate is not going past 100 standing and resting has been between 60-75 and my pooling isn't as visible.Good luck to you:)
  19. Hey all, So I have been crying for 2 days and today was the BIG DAY, was in the gown about to have I.V's hooked up then the nurse ran the magic wand over my forehead and said "You have a fever" and they canceled surgery and sent me home with antibiotics and will try to reschedule Friday. I am so worried and wonder if the crying so much caused the fever!!!! I really don't want this surgery, I mean I was like a 2 year old balling and thinking the worst was going to happen.I told husband I felt like a dog going to the pound to be put to sleep I'm not doing good at all!
  20. Hannah its okay I will be having a hysterectomy in 2 days.
  21. This post kinda freaked me out!!!! I will be having surgery Tuesday I have told anesthesiologist about my POTS and he spoke with my cardio hopefully they got all precautions set up!
  22. Haven't heard that term...? Is there another name like % or rate ? LOL sorry had to look it up! Ok well I have had 3 stress tests and have never been told my score, I will have to call my cardio and find that out.
  23. Well I always thought hormones were the cause of my problems and all hormonal testing has been normal. Until recently nothing has been abnormal until they found a mass on one of my ovaries, which they have to remove the ovary and I suggest having a hysterectomy (Feb.28th) and my doctor agreed. I will be having a radical hyster leaving only 1 good ovary. So I guess I will know soon if my hormones were playing a part of my POTS. I know for sure stopping my cycle is going to be helpful and with only one ovary should be less hormonal activity. I believe I have had POTS since I was a teen but pregnancy made it progress in my case. I will keep an update on my recovery and hopeful improvements!
  24. Surgery set for FEB.28th having hysterectomy leaving one ovary if possible. I guess I wanted to know if most of my symptoms are made worse by my cycle is it possible to become better from this surgery? Hopefully it helps, I'm very nervous!
  25. I have had 5 children , I'm 5'4 currently 95 lbs and NOT one stretch mark....???? Thought I was just lucky:) Is there something behind this...
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