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Everything posted by Gemma

  1. Thank you for your input but that is not what I am asking. And what you are referring to are work credits, whatever you earned already is not taken away and working extra amount of time adds up to your working credits. It even says that in your link. I have researched enough about work trial period while on disability. I wanted to see if there are people here who actually went thru it and how it effected their benefits. Thank you!!!
  2. I did read information on their website. Its not very clear and there is nothing about have to work for another 5 years before you can requalify. That doesn't make any sense! I was wondering if anyone tried returning to work or was able to work part time to see if they can manage it before loosing the benefits. Thank you.
  3. Hi everyone. Can someone provide information what happens to disability benefits if return to work part time? Are people on disability allowed to try to work without loosing benefits? Will they take away the benefits and if so, is it difficult to reinstate the benefits if unable to work? Anyone been in this situation? Thank you for the info. Not sure if this post belongs in this part of the forum, please move if it diesn't. Thank you!
  4. Wow. Thank you all for replying. I greatly appreciate it. Its very scary not to know what to expect, especially that lots of obgyns do not know much about POTS. My high risk also told me that I do not need to be seen by him, unless I will need some meds. So i am basicly seen by regular obgyn. I had 3 different clinics that i visited and it was so difficult to choose. Maybe someone can recommend what would be the best choice for my delivery. One doctor that i saw is very nice and she is the only one in the practice, which means she will be delivering the baby. But she is not familiar with POTS. Also, she is affiliated with the hospital thats closest to my house but I had a bad experience there with my POTS visits. Every time in ER they basically gave me anxiety diagnose instead of POTS. Also, none of the stuff in the hospital new what POTS was. Another doctor, is with a different hospital which is like 5 minutes farther then the first one. I know her for the past 7 years that she has been my regular obgyn. She doesnt know about POTS either. She is very nice doctor and the only one in the practice also. However, In order for me to stay with her I have to see another risk doctor who is affiliated with that hospital, plus I have no cardiologist that affiliated with this hospital, just in case something goes wrong. Now 3rd obgyn group has like 5 doctors, which is a negative because no personal care. Anyone of them can deliver the baby depending who is on call that day. However, most of docs there are familiar with POTS. Also, my risk doctor is affiliated with this hospital and also the first one that I mentioned above. Plus the hospital that they deliver at specializes in cardiology and also has the best neonatal care out of all 3 of them. I was also seen by electrophysiology cardiologist at this hospital as well. Few times that I was at ER there the staff new about POTS, even technicians. They always ran a mini tilt table test on me there. Also, the obgyn gave me numbers of anesthesiologist to call and meet with them before delivery. Also, she said during labor they bring in cardiologist on staff, just to see how I am doing and in case something goes wrong. So whats negative with this hospital is that its a teaching hospital they can have resident in the room during delivery and even sometimes checking my vitals and stuff. And another negative is 5 doctors so not much personal care. Sorry I wrong so much. But whoever decides to respond can you recommend what you think will be the best and safest choice for me. My husband wants a 3 hospital because he says he will worry less for me and the baby this way. But I am thinking that with our condition they should be able to take care of me at any hospital. What do you think girls? The other hospitals are more homey style local hospitals. The 3rd one is like a teaching hospital. All 3 of them are pretty close to house, like 15-25 minutes, so time is not an issue. Thank you all!!!
  5. Hi, thanks for a reply. I am actually under the care of high risk doctor. But I only saw him 2 times and he said if needed he will see me again if any complications. I asked him if he can recommend wether vaginal or c-section is better but he said it doesnt matter for POTS. He knows of this condition well, but no real recommendations from him as to labor and delivery. This is the reason why I posted here in hopes to get some answers. I did hear before that we can not get certain anesthesia and the epidural needs to be administered special way, but I don't have exact details. If anyone is familiar with this information please let me know. As to head pressure, its so weird that I feel it when I sit or stand but it goes away after 5 minutes when I lay down. I googled it online and something like CSF leakage come up. Well hopefully it just goes away, because being pregnant and having some leakage is no fun . Thank you.
  6. Hi marigold. You said after delivery you felt much better. Do you mean you feel like your POTS is getting better? I've heard that some women stop being sick after delivery, as if some hormonal changes fix the body. So, I am hoping this could be the case for some of us.
  7. Is this post appearing on the forum at all? I wonder why nobody answers? I am pretty sure lots of women here went thru labor and delivery and I would really appreciate some recommendations. Thank you all.
  8. Ohh, no one for POTS. Just my primary as needed and obgyn for pregnancy. None of the POTS/OI docs were helpful so i just stopped looking for one. 2 years of trying to find a good doctor was enough!
  9. I spoke to him on the phone. He was very helpful. I was planning on going to Florida to see friends but it got canceled so I never saw him. But on the phone we had a very long conversation about my symptoms and what meds would help and what meds I already took. We spoke for like 30 minutes and I am not even his patient. Very nice and helpful guy. I wish I lived there and could become his patient.
  10. Hi Sarah. What do you mean who I am working with? Did you mean the doctor?
  11. Hi everyone! I am 5 month pregnant and trying to get more information about pregnancy and labor with dysautonomia. If anyone who went thru pregnancy can recommend any useful info. What kind of anesthesia are we able to get if needed C-section? How about epidural, are we allowed to get that? Is vaginal labor better for us or C-section? I was told we are not considered high risk, was anyone told differently? Do I need to let any important info to my doctor? What might go wrong? Also, how everyone was feeling during pregnancy? I am so so, fatigue better, but have occasional presyncope flares. Also, has this weird pressure inside my head which makes me totally spaced out and foggy and goes away when I lay down. Is this a POTS symptom or pregnancy? I didnt really have it much before. Thank you all!
  12. Thanks everyone for replies. I greatly appreciate it. My symptoms now fluctuate. Some days I feel very POTSY, like just taking shower makes me fatigue and lightheaded and my HR goes above 100, but some days I feel perfectly normal. Last Saturday I had my first panic attack . I haven't had one in over 7 months. I take no meds now. I do have a cardiologist but he is not very knowledgable in POTS but very understanding and supporting, so I am hoping if things get crazy he can advise some treatment. I also saw high risk preg doc, and he said to come back when I am about 10-12 weeks, unless some problems start. Right now I am looking for a good gyno who knows about POTS, but In the mean time I am being followed by fertility doctor up until 10 weeks. Do you ladies think I am on the right tract with all my health care just in case my POTS gets crazy. I also, want to mention that before pregnancy my POTS was mostly stable with occasional flares for few days, especially before my period, so could be related to hormones. Also, I was taking no meds, all of the once made me worse and I decided not to take any and just pushed myself to do walks and bike and it helped. Also, I have been reading online about anesthesia and csesion and also epidural, and it seems for POTS patients there seems to be a different protocol that anesthesiologist needs to follow. Did any of you meet before going into labor to discuss it with anestisiolohist? Thank you all.
  13. Hi everyone. I have a question about pregnancy. So, my POTS has been clearing up since April and I was almost symptom free, only experienced spontaneous symptoms that were very manageable. Last week I started feeling certain symptoms that I was not sure what to associate with: out of breath upon exertion, elevated HR when walk or stand and elevated resting one as well by like 20 points. I went to my cardio did ekg and all is fine. Then 5 days later I found out I am pregnant. We have been trying for some time but this happened unexpected. I was wondering are my POTS symptoms coming back or these are normal symptoms for women without POTS as well. I am starting full time school next week and worry how I will manage it if my POTS is coming back. I read online on different forums and lots of women say that in early pregnancy they feel out of breath just walking a block, palpitations, elevated HR. Does anyone know if its normal. I also had a panic attack yesterday when my Heart started racing. Also I started feeling a little lightheaded, feeling like my body is pulling towards the ground, and a little blurry vision accompanied with hard to concentrate. This is my first pregnancy besides the one that I had 2.5 years ago and miscarried. I wanted to know if all these symptoms are normal in pregnancy or my POTS is acting up. Also, I want to try to continue going to school which is 4 days a week, will pushing myself like this harm the baby in any way? Thank you all mom's out there who can share your experience and answer my questions. And please do not write too many scary stories as this is a stressful time for me and I am looking for support.
  14. Hi everyone. I started zoloft 7 days ago. First 2 days spaced out, then felt really well and my POTS symptoms were less. However on the 7th day very severe lightheadness started, dizzeness, near fainting episodes, fear, anxiety, almost panic attacks. Is this a reaction to the med? Will it pass? Or can it get worse? I had similar symptoms while on xanax, but after I went off xanax my lightheadness started going away. For the past month, I didnt have lightheadness at all. Please help, i dont know if I should continue with the med. Thank you.
  15. Hi everyone. So today is the 7th day that I will be taking zoloft and I do not know if I should continue. So, to sum up first 2 days on zoloft I felt spaced out, it went away, then I was feeling great. My POTS symptoms were much better on zoloft, however I started feeling that weird rocky boat feeling like my brain is moving inside my head. This feeling was gone lately and now with zoloft it came back again. Due to relieve from POTS symptoms I decided to stick with it. However, today i started feeling presyncopy again which I havent felt in months and adrenal rushes which almost lead to panic attacks. I was feeling much better since March, no panic attacks since january, POTS symptoms much tolerable. I decided to try SSRI because my doctor pushed me to and kept on saying that when I return back to school my POTS will return again, so better take SSRI. Now I dont know if I should continue, because I thought with SSRIs side effects supposed to go away, but for me I was fine for 7 days and now getting back my symptoms. It was the same story with xanax. When I was prescribed xanax, I was told I have anxiety, so I kept on taking it. I felt very panicky and anxiety was very high on xanax. Once I got off my symptoms started subsiding, even POTS symptoms started going away. So now I am afraid that zoloft can bring back those bad symptoms again. My question is, with SSRIs do side effects appear right away and do they go away as time passes, or can they build up and get worse? I am just trying to understand if its zoloft making me feel like that today or its just a coincidence. Thanks all.
  16. I actually saw a local hematologist for it, he knew more then immunologist about it, or at least thats how it looked. I also, send email to Dr. Afrin in SC. He is not taking new patients at this point, but he is very good with communicating over email. He emailed me an article which tells how to diagnose MCAS. Also, he is willing to talk to local doctor who will be able to perform tests and will advise your doctor which tests need to be done.
  17. I was just watching the video. Did you have a two day test? And were they able to diagnose you with CFS? I dont know where to go with these results now. The pulmonologist that ordered the test called me and said that my cardio and pulmonary system is fine and I am just deconditioned or have myastenia gravis and should see neurologist. Neurologist wants to do EMG. Nobody is suggesting the CFS. Who should I see for this. Would it be my cardiologist, should he know about this test? Thanks.
  18. Wow thats interesting. I only had one test done. My pulmonologist send me for that test just because I asked him and told him of my shortness of breath when I exert myself. So, could these results mean it could be ME/CFS?
  19. Hi, my 17OH was 3 times elevated. There were some other abnormalities as well. My DHEA elevated, cortisol elevated, prolactin a little elevated and something else. But main concern was my 17OH three times high of the norm. However, my ACTH stimulation test was normal. One doctor says I have it, and the other says that I don't. My periods are normal, but I have problems conceiving. Actually got pregnant few years ago, but had a miscarriage. Doctor gave me dexamethasone, is it similar to what you have been taking? I wonder if that is all I need. I have not tried it yet. Instead my primary put me on zoloft recently, but now I don't know maybe I don't even need zoloft, but need steroids.
  20. Hi was anyone told they might have adrenal hyperplasia? One endo doctor diagnosed me with an adult onset of adrenal hyperplasia based on blood work. She gave me steroids to take. I went to another doctor for second opinion, but he said he is not sure I have it. So, i went to a 3rd endo doc who is affiliated with the university hospital and is a professor there, so he will go thru my results and let me know his opinion. I wonder if anyone here was ever told that they might have it, and can it be affiliated with POTS? Thanks.
  21. I think my doc also added histamine and something else to that test. I have to look it up. I still didnt do it, but have it just in case.
  22. Hi I went yestartday to see neuro doc. He gave me a referral for blood work, basically same as you had done. He kinda pushed for EMG test, but I said lets do blood work first. I don't really want to do EMG, its painful and I don't want them sticking needles into me.
  23. Thanks for reply montogiuliana. I actually feel better with my POTS symptoms on zoloft, but really do not like the feeling in my head. It feels like my brain is moving inside my skull, I think this feeling is called rocky boat feeling, or wooziness. I wonder if its just temporary side effect from zoloft, or its something that will stay. I had this feeling while i was on xanax and also thru the withdrawal from xanax, however for the past month its been subsiding and I almost didnt have it. Now today I feel it really bad again. I hope its just a side effect and goes away.
  24. Hi everyone. So I am still taking zoloft. Today will be my 5th day. I am taking 25mg. My fatigue s much less and overall POTS symptoms are better. The only thing that really worries me and I dont like is the spaciness and feeling like my brain is moving inside my skull. I had similar symptoms on xanax, i think its called boaty feeling or wooziness. I need my brain to work so I can study. My school starts in 4 days. Is this supposed to go away?
  25. Hi kjay. Were you told to see neurologist to be evaluated for myopathy? My pulmonologist suggested that.
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