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Everything posted by MomtoGiuliana

  1. So sorry. I have not heard of patients becoming dependent on saline. Personally I have been on regular saline for as long as a month at a time (2 to 3 times a week!). At the infusion center I met other POTS patients and some had been coming to get infusions for months or even years (although I think off and on). Does increasing salt intake, as well as fluids, help you? Hopefully others with experience with longer term use can weigh in with their experiences.
  2. That's good. I notice you said you are getting vitamins via IV. Perhaps you could ask your doctor if this might artificially inflate your vit levels in a blood test. I know when I started getting B12 shots and taking B12 orally, B12 in blood tests went sky high. But from what I understand that is not a good indication that a patient is not deficient. You have to take B12 at high levels for many months to address deficiency, from what I understand.
  3. If you are experiencing malabsorption I wonder if your doctor has tested for any vitamin deficiencies that could be exacerbating or causing your symptoms. I was diagnosed with low B12 a couple of years ago. This can cause neurological symptoms.
  4. This is not uncommon with dysautonomia. Here is a recent discussion that may be useful. https://www.dinet.org/forums/topic/30856-swaying-back-and-forth Just as a side thought, and maybe you have already had this evaluated, but low B12 can cause neurological symptoms. I was diagnosed w low B12 a couple of years ago and had multiple symptoms including loss of balance that finally improved after taking a supplement and getting shots over several months ( I still take a supplement).
  5. Thanks for checking in. I am so sorry you still have no answers.
  6. I find that reducing sugar intake and increased fat and protein intake reduces feeling POTS-y--particularly in the AM. I think it has something to do with blood pooling in the abdomen after eating -- and not sure why eating foods with lower glycemic index reduces that (if that is what is happening?). Here is a list of foods and their glycemic index: https://www.health.harvard.edu/diseases-and-conditions/glycemic-index-and-glycemic-load-for-100-foods Also plenty of fluids especially in the AM and salt--that is the dietary change that has helped me the most. However, prior to developing POTS symptoms, my diet was already pretty healthy. I don't eat a lot of processed foods and I am a vegetarian (although I do eat eggs and some dairy). Some POTS patients have problems such as gastoparesis which adds additional problems and constraints.
  7. To reiterate somewhat what has already been said, this physician is actually one of DINET's advisors; she is a leading expert on dysautonomia. As others have also said, her phone consultation would rely on working with a doctor you are seeing in person. I did consult with her once. I had to send her all lab and study results and other records first. I think a phone consultation may be helpful if you have a doctor willing to work with her. Because there are few experts nationwide, her phone consultation fills in gaps, for patients too unwell to travel long distances to see a specialist. She will make recommendations for tests and treatment but she will not treat/prescribe; that will be up to your doctor.
  8. You may feel badly afterwards and it could trigger feeling more poorly for a few days afterwards. This definitely happened to me. But I also had no idea what my diagnosis could be at that point and did not understand that salt and hydration were helpful for reducing symptoms. Regardless it's an important diagnostic tool--so important to have it done. Take care.
  9. Please note that normally we do not allow the inclusion of any sort of commercial links in member posts. However, DINET maintains a list of physicians, and sharing a link to doctors' websites in this vetted list is allowed on the forum. Dr. Blitshteyn (website above) is a valued DINET advisor and is included in our DINET research, newsletters and physician database. Dr. Blitshteyn is also prominently featured in our original documentary,, "Changes: Living with POTS" To learn more about our Medical Advisors, please visit https://www.dinet.org/aboutus/advisors/
  10. My specialist encouraged me to exercise and really never talked to me about what was a maximum safe hr. He also started me on beta blocker when he diagnosed me. I had also had various tests on my heart function and structure so I assume he felt comfortable there was no dangerous abnormality. My heartrate tends to be lower if I am well hydrated and also later in the day I seem to tolerate exercise better than first thing in the AM. Good to be evaluated by a cardiologist if you are experiencing a high heart rate or other concerns.
  11. Have you been diagnosed with POTS and do you have a specialist? If so, and if they have admitted you (you said you may be in the hospital for a couple of days) the hospital should consult with that specialist. I am almost positive it would be recommended to put you on IV fluids. Hope you feel better soon.
  12. I do not know how unusual this is for POTS. When I am dehydrated and my blood volume is low, my bp actually goes up. At the same time I will feel faint, dizzy, etc as if my bp were low. Rehydrating can bring my hr and bp down. In general it is not too unusual w dysautonomia for a patient to experience both low and high bp. If you are dehydrated you may notice more symptoms on standing, such as more palpitations. IV fluids help me a great deal when I get into a "POTS hole".
  13. In case you have not looked here already, we maintain a list of specialists: https://www.dinet.org/physicians/ So sorry you have had trouble with a close relationship.
  14. I also felt lonely and scared with severe disabling symptoms and no diagnosis, back in 2002 while pregnant and then with even worse symptoms post partum. Multiple ER visits and multiple specialists and finally hospitalization I was diagnosed with POTS. Even with all my internet research I never came across this diagnosis as a possibility. Until I was diagnosed by an EP I was told I had depression and anxiety, and was brushed off by doctors who couldn't seem to grasp the extent of my physical disability. It was a frightening time, during a time of life that should be full of joy. I promptly discovered DINET after my diagnosis. Even in 2002/2003 the site was full of information and members and administrators were so kind, understanding and helpful as I navigated acceptance of my diagnosis/physical limitations and treatment. As I recovered (basically fully recovered 4 years later) I felt a strong need to give back to the organization that gave me so much information and support when I was in need. I hated the thought of anyone else needlessly suffering through months of severe and frightening symptoms with no diagnosis except mental illness. It's almost 2020 and I believe a lot has changed since my diagnosis thankfully. There is so much more information available on line AND doctors are much more aware, in general, of the condition and how severe it can be. But I still feel strongly that DINET plays an important role for patients and their caregivers, as there is always new information, new research and there is always a need for support, as diagnosis and treatment is still far from perfect. It is my hope that the work I provide as an administrator of the forum helps others with this diagnosis to better navigate healing/recovery/lifestyle modifications and to feel much less alone.
  15. Thank you both for sharing. Happy Thanksgiving to all who celebrate!
  16. Have you been evaluated as to why you cannot sit up or walk and has a doctor advised you to remain in bed? When my symptoms became that severe, due to POTS, I was hospitalized, and given IV fluids for 48 hours. I was then at least able to stand up and walk across a room and use a bathroom. After that I went to infusion center 3X a week for weeks to get fluids, which helped me not to slide back to that state. If you have POTS, IV fluids may help you greatly. I agree w Pistol that remaining in bed is not likely to help you to improve.
  17. I've had episodes like this. Including, years ago, followed by a thorough work up and no life threatening problems detected. It's good tho to let your doctor know and have some follow up.
  18. Yes I have felt this way. Drinking more fluids and salt and ideally eating or drinking something rich in potassium helps me.
  19. Please keep in mind that forum guidelines disallow any commercial links. In addition, advice on how someone else should do something medically related is not allowed. It is fine to share your own experiences and it is fine to share brand names that you like (without a link). Thank you!
  20. I agree that I would talk frankly with your therapist. I saw a psychiatrist before my POTS diagnosis at the insistence of my PCP who was convinced my only issue was severe anxiety and depression. She evaluated me and wrote back to him that my symptoms could not possibly be caused by depression and anxiety (and furthermore she did not believe I had anxiety or depression that required treatment--she felt I needed a diagnosis and proper medical treatment). So I think such a specialist can be helpful in convincing a questioning PCP that there are separate issues--if they are truly working together.
  21. Welcome to the forum. Very sorry that you are struggling with severe fatigue and medication issues. You may be interested in these past topics: https://www.dinet.org/forums/topic/23655-need-help-with-justifying-adderall-to-insurance/ https://www.dinet.org/forums/topic/23147-adderall-ritalin/ You can also do a search for keywords within the forum to find past discussions.
  22. Many women with POTS and other forms of dysautonomia have children. Keep in mind that while not entirely predictable, for the majority, symptoms improve over time--and also can be improved with medication. Some women (I think I have read as many as a third or more) actually feel better during pregnancy bc of increased blood volume. As has been mentioned, these conditions are not necessarily inherited. I am the only person in my family to have any indication of symptoms. (I do think some people have mild undiagnosed dysautonomia--I think it is underdiagnosed). I developed POTS WITH pregnancy. Looking back I had mild and unexplained symptoms prior to pregnancy. So pregnancy was very hard and the year that followed was even harder. However, I recovered greatly after that and other than some episodes of relapse I have been well. Even when I was unwell and unable to do much physically, I was able to provide love and care to my child and even breastfeed (just a lot of sitting and lying down that first year). In fact I believe that my child reads and speaks at a high level bc in that first year we had so much one on one communication and close contact--talking, reading, singing, face to face. Ideally you want to be under the care of your specialist and a high risk ob/gyn. Not bc the pregnancy itself is necessarily high risk but bc they would know the most about the use of medications during pregnancy, if needed. As others have said, making sure you have support for the first year or years is important bc it is hard to know how well you will be and a young child takes a lot of energy on less sleep/rest.
  23. Has your B12 level been tested? Low B12 triggered POTS, for me.
  24. From what I remember, it is not necessary to taper off Prozac like it is for other SSRIs. I do remember tapering off over a period of a week or two.
  25. I improved to such a great extent I decided to come off the Prozac to see how I would do. Overall I did not have worsening symptoms off the Prozac. It's really hard to know if the Prozac actually helped or if I was just going to improve anyway.
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