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Everything posted by MomtoGiuliana

  1. 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.
  2. 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.
  3. 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".
  4. 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.
  5. 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.
  6. Thank you both for sharing. Happy Thanksgiving to all who celebrate!
  7. 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.
  8. 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.
  9. Yes I have felt this way. Drinking more fluids and salt and ideally eating or drinking something rich in potassium helps me.
  10. 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!
  11. 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.
  12. 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.
  13. 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.
  14. Has your B12 level been tested? Low B12 triggered POTS, for me.
  15. 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.
  16. 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.
  17. I've had two major episodes of POTS in my life that were severe and disabling--first one seemed to be brought on by pregnancy, which lasted about a year, 2nd by low B12, some 15 years later. However prior to and between these episodes, I experienced symptoms off and on. I've never been back to 100% after the first episode, although a whole lot better. I still have issues with tachycardia off and on, as well as other symptoms.
  18. I get symptoms lying down as well. I don't think this is unusual in POTS. I also had tachycardia at night that would wake me up when I was early in my diagnosis. I still get it at times, and my hr can often remain high even when I am asleep (eg in the 80s bpm). I did not realize this until I started wearing a fitbit regularly to bed. My hr during the day when seated is typically in the 60s. For me lying down or standing seems to trigger symptoms (standing moreso--obviously, I guess).
  19. I think there are various methods from what I understand. I saw a therapist for awhile--17 yrs ago--who used biofeedback and did a few sessions with me. I think he normally used it with people dealing with anxiety/stress--he did not profess to be a POTS expert--I was seeing him mainly for helping me cope with POTS at the time, emotionally/mentally. From what I remember the machine measured my heartrate and by watching my heartrate visualized on a computer screen I would use breath technique to lower it--basically it is a training device to assist a user to be more aware of aspects of their body and to learn what you can do (eg breathing differently) to affect physiology. I think biofeedback machines can also measure body temperature, brain waves and other functions. I have heard of it being used for POTS treatment. Not sure if there are many studies supporting it. My POTS specialist did not feel it would be useful for treating POTS. IMO it may be helpful for people with anxiety. I think it may be helpful for some forms of hypertension. If either of these are an aspect of POTS, biofeedback might be helpful for improving symptoms. I personally have my doubts that biofeedback would be a terribly useful tool otherwise for POTS. But I have to say that I have found breathing techniques helpful at times when I feel stressed about or fearful of symptoms, and anxiety is compounding my symptoms.
  20. Yes. I had severe POTS during pregnancy and post partum which eventually pretty much resolved to mild symptoms--my child is now 16. However last year I suddenly developed severe POTS for a 2nd time. My B12 was found to be low. After several months of supplementation my symptoms resolved again to mild symptoms. There are published articles that link low B12 to autonomic dysfunction (I think the one study I remember found that teens with autonomic dysfunction improved with B12 treatment). There has also been a published article linking low Vit D to autonomic dysfunction. Many patients with POTS have borderline low potassium, from what I have seen here on the forum. I have it at times. Hopefully resolving these imbalances you mention will bring about improvement in symptoms for you.
  21. I have also had severe acid reflux at times that my POTS is also flaring. I agree w Pistol that it can be all related; if your autonomic system is out of whack that can cause multiple medical issues. One thing that I remember helped me years ago was deglycerized licorice. Not sure why but it was more effective than any heartburn medication for me. Since this is an herbal supplement I would talk to doctor or pharmacist before using it.
  22. I think basically in the US anyway it is unusual to have a vitamin deficiency. Or anyway that is the general view. There has been controversy over the issue of Vitamin D. Iron can be low for many women and a CBC can assess this which would be part of a periodic exam. It is becoming more recognized I believe that low B12 is not that uncommon. Especially in people over 50. But even younger people who are vegan or vegetarian or develop difficulty absorbing it for one of many reasons including taking certain medications. Probably if someone is experiencing neuropathy most doctors would think to check B12--hopefully.
  23. Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested. I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year. After 6 months on high dose of B12 the symptoms resolved nearly completely.
  24. Wow, thank you for sharing. Really interesting. Many of us experience exercise intolerance--even after many other severe symptoms improve. This is important research!
  25. Interesting that you mention the grocery store. For the longest time I would get symptomatic when in a grocery store or almost any large store--even before I was diagnosed I would experience feeling unusual when in a large store--and it still happens to me at times. I have avoided places like Target etc for that reason in general. I don't know if it is the lighting or what sets it off. I have felt faint standing in line for longer than 5 minutes at grocery store, but that makes more sense.
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