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About MomtoGiuliana

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  • Birthday 08/16/1968

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  1. MomtoGiuliana

    Help With Questions for Cardiologist

    You may want to be tested for vitamin deficiencies. There are studies linking POTS to vitamin D and B12 deficiencies, and also low iron, it would not hurt to rule these out.
  2. MomtoGiuliana

    Low Pulse Pressure

    low pulse pressure is not uncommon in POTS patients. It has been discussed here on the forum. You might try a search for it to see past discussions.
  3. MomtoGiuliana

    p.o.t.s. newbie w/ questions about symptoms

    Can you talk to your pediatrician regarding breastfeeding while on florinef? I understand your concern. I stopped breastfeeding when I started meds for POTS. I was sad to do so but I was so non-functional that I had to attempt treatment, and I was worried about the effect of the meds on my baby. I agree with what pistol stated that fluid and salt loading can be so helpful for many of us--and compression hose. I know it is scary. It may be helpful to keep in mind that most people do improve over time. Especially with effective treatment.
  4. MomtoGiuliana

    Legs burning as if I'm exercising

    I also experience muscle burning sensation with little exertion at times, and more severe when POTS is severe. I do think this is a common symptom and may have to do with low blood volume, but not sure. It may help to keep a diary of symptoms to share with your doctor.
  5. I take pindolol. It does not cut bp as much as other beta blockers, from what I understand. My doctors have told me I can take it as needed, or at least, increase when needed. I take a very small dose on a daily basis but I do increase it on days when my symptoms are worse.
  6. Severe exhaustion is a typical symptom. Does cardiologist say it is not POTS b/c there is no longer a large rise in HR on standing? This would define POTS--not blood pressure. Some POTS patients also experience blood pressure changes and others do not. Fluids and salt loading typically have helped me greatly when I am having severe symptoms. Including saline by IV. However this can only help so much. It's possible to be doing all the things recommended, compression hose, etc. and still be disabled by POTS/dysautonomia. There are many other treatment options besides midodrine--perhaps something else could be tried?
  7. MomtoGiuliana


    Do you see a specialist for your sleep apnea? I would contact the doctor who diagnosed you or you are under treatment for regarding your concerns and symptoms. I think you noted you have seen a specialist in dysautonomia? Has this doctor been helpful? We maintain a list of specialists here if this would be helpful: https://www.dinet.org/physicians/ Dysautonomia can cause severe and disabling symptoms. Hope you can get help from a specialist soon.
  8. MomtoGiuliana

    PVCs and PACs? — Irregular Heartbeats

    Yes I have bouts of this from time to time. It is very unsettling I agree. Sometimes fluids and salt helps but sometimes nothing seems to, for me. After a few days or a week, I won't notice as many.
  9. MomtoGiuliana


    I agree with what others have said. You said you have seen a specialist. Did they prescribe any meds? It can take time and trial and error to find what works. Most people do improve over time. It does take patience, unfortunately most of us do not improve quickly. I just went through a bad relapse earlier this year, and then improved again. Going through that made me realize that many doctors are more aware of this condition than they were 15 years ago when I was very sick before with POTS. However, there is also dismissiveness still, and I think especially in the ER where doctors are trained to save lives not to manage chronic conditions, no matter how severe. I'm sorry you experienced that. The thing that can often help the most in the ER is fluids. If you have seen a specialist perhaps he or she could help you get IV fluids? This can be very beneficial at least as a short term solution. When I had my relapse I got IV fluids 3X a week and that helped tremendously. At least I could stand up a bit and manage alone in my house.
  10. MomtoGiuliana

    Living alone in h***

    Welcome to the forum. Have you been diagnosed with POTS or something similar? Are you able to see a specialist? Were you prescribed meds? It can take time and trial and error to find the combination of meds that help best. Most of us with POTS do feel better though with a high fluid and salt intake. For most people this condition waxes and wanes and can improve over time, especially with effective treatment. Unfortunately feeling and being isolated can be part of a chronic medical condition. Hope you can start to feel better now that you have a diagnosis and can hopefully start a treatment that helps.
  11. That is a good point Lily. If a doctor feels there is a particular cause of something, even if we are skeptical it does not hurt to follow through and have it evaluated by a specialist. And mental health does hold a stigma that can prevent people from getting the care they need. I had a doctor that kept stating my problems were rooted in anxiety and depression. Finally I agreed to see a psychologist. She ruled out significant psychological problems. If nothing else, this was helpful documentation to provide when seeing my doctor and other specialists.
  12. MomtoGiuliana

    I'm new to the forum. I am scared

    The defining feature of POTS is the change in HR from lying to standing. Some POTS patients have low BP, some high, some experience a wide range of BP. When I am in a flare my BP tends to be high. Even so, I will feel faint/lightheaded. Even for people with POTS they may not meet the strict definition of POTS every day or every moment. It may be helpful to record your HR lying, sitting and standing a couple of times a day over a week or so and share that with your physician.
  13. So sorry you were treated this way by a physician. I have never heard of a psychosomatic relationship between POTS and food. I think one challenge with POTS is that bc it affects the nervous system it can masquerade as anxiety and doctors who don't understand this, can misinterpret our symptoms. Also as patients, when symptoms are very severe, it can be hard to separate what is anxiety driven and what is being driven by POTS--at least I speak for myself in that regard! Definitely POTS patients have reported foods setting off symptoms. I used to have to eat a very low carb diet to prevent the most severe symptoms, for example. Have you been able to keep a diary of foods eaten and symptoms? There is also a condition called mast cell activation disorder. Some POTS patients have this. You may want to look into that.
  14. MomtoGiuliana

    I'm new to the forum. I am scared

    Welcome to the forum. I am sorry you've been experiencing such disabling symptoms. It does sound consistent with POTS. It can take time to find the right meds to help you feel better. It sounds like you are seeing a specialist who can help with this process. There is not a one size fits all approach, however, most people feel better with increased fluid and salt intake. Many feel better with IV saline as well. Most people do improve over time, but patience is often needed. Take care.
  15. MomtoGiuliana

    Flu shot or not to flu shot?

    I get the flu shot each year. Sore arm, no other discernible side effects otherwise. Much better than getting the flu.