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MomtoGiuliana

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Everything posted by MomtoGiuliana

  1. So sorry you experienced this set back. Setbacks are so frustrating and frightening. That is such a good point not to burden ourselves further with questioning why--especially "what should I have done differently". I agree that so much of the time the flare up or set back is not connected to anything we probably have control of.
  2. Welcome to the forum. Headaches can be a part of dysautonomia. I get episodes of headache that can last for days, but not an aura, or anything that suggests migraine. I've been told they are tension headaches. You can search for "migraine" on the forum to find past discussions. There have been a lot of past discussions on this topic. Here are a couple that may be helpful: https://www.dinet.org/forums/topic/27750-occipital-neuralgia-vs-migraine https://www.dinet.org/forums/topic/25786-horrible-migraine
  3. Welcome to the forum. There have been past discussions about POTS and narcolepsy. You can do a search on the forum using the search tool, but here are a couple discussions that may be helpful: https://www.dinet.org/forums/topic/27153-pots-or-narcolepsy https://www.dinet.org/forums/topic/23444-diagnosed-with-narcolepsy https://www.dinet.org/forums/topic/12137-sleep-disorders
  4. Yes this is very typical. I have had many days of feeling horrendous in the AM and quite normal in the evening, only to repeat that pattern the next day. One dr told me it is due to diurnal variations in cortisol which affects fluid retention. Many POTS patients arrange their schedules and lives so they are most active in the late afternoon and evening.
  5. I took Prozac for a couple of years. I believe it may have helped with severe symptoms. However there is an adjustment period where some symptoms may worsen. Studies have found it is beneficial for some POTS patients. We have a little more information here: https://www.dinet.org/info/pots/pots-what-helps-r100/
  6. I tried it once when I was having severe insomnia as well as a small POTS flare up. I did feel really great afterwards--super relaxed. I don't think it helped POTS or my insomnia. However, my guess is that acupuncture is most beneficial when practiced regularly -- it is not a treatment that would be expected to be effective after one session? I don't think there is any research that supports acupuncture as a treatment for POTS/dysautonomia. But it has been shown to be helpful for pain management. Let us know how it works for you.
  7. That is great to hear--so glad you got through it OK. I tend to get a flare with any infection, even a common cold. So I expect to have a flare if I were to get sick with this. There is research indicating that there may be a relationship between infecting dose and the severity of illness. https://www.sciencedirect.com/science/article/pii/S1201971220304707 And wearing a mask may protect the wearer from larger doses. Less severe infections may be less likely to initiate a flare?
  8. I assume you saw this: https://www.dinet.org/forums/topic/31200-statement-on-covid-19-and-cfsoi/ I think many of us are concerned about the unknowns regarding POTS and COVID-19. I think it is good your dr doesn't want you in a classroom. I would hope that any doctor would recommend against any patient being in a classroom without masks in the middle of a severe outbreak. People without any known underlying conditions are having serious complications, and it seems right now hard to predict. The CDC has a list of conditions that are known to make severe illness more likely as you probably know: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html Nothing like POTS is in this list but unfortunately until a lot more data is collected a full understanding doesn't exist. I think another concern is the long term impact of the virus. Since many of us have flare ups when we have any kind of inflammation, this virus is IMO likely to cause POTS flare up for many of us, and I worry for myself, it could be a long-lasting flare up, at the very least.
  9. It's good your eye dr is trying to be careful. I've had my pupils dilated many times and it has not affected my POTS in any way. Everyone is different however. Hopefully you see a specialist and can talk to him/her about this concern.
  10. So sorry this happened. Hope you are feeling more stable now.
  11. My tips or strategies for social distancing--along with what Pistol already stated-- 1) use this time to invest in an activity that is enriching and comforting. Although I have been in a very bad flare up for 2 months of this pandemic which meant I couldn't do much anyway, when I am feeling the energy to do so, I am investing time in additional violin practice and research and listening to music that I would not have had time for otherwise. I think developing a new hobby or interest that can be explored on your own is great too. 2) comfort cooking or baking has been a guilty pleasure (moreso back in March and April when I was feeling better). Cookies, bread, etc that make the house smell comforting and "normal" felt good to me. 3) getting outside. I think fresh air and sunshine is important for health. Even when I was feeling poorly, I was going outside if the weather at all allowed, at least onto my porch. I noticed I felt at least 10% better just being outdoors and enjoying observing the street trees and the plants I am growing on my porch and in my yard. Simply observing birds, ants and other insects, made me feel more connected to the world and distracted from the worries of feeling unwell/the pandemic. It's my wish that every person has access to some beautiful ourdoor location--which sadly is not the case for everyone and especially now. But as parks are re-opening, visiting a park is one of the safest activities you can do away from home and I think it is hugely beneficial for mental and physical health. My strategy for coping is research and supporting others going through similar experiences (as Pistol states too). I've also found some meditations on line for dealing with anxiety and chronic pain that help. This is an on-going process for me!
  12. I have been going through a flare up and it has included neck pain and back pain. I have been feeling that the two issues must be related. My autonomic dysfunction has improved over 2 months, and the pain too, but I still have pain. I was told it is arthritis. PT was prescribed but I have not yet pursued that.
  13. I agree with you and I was thinking this week that many of us with POTS who have experienced months of being homebound are probably better adjusted to this than many in the general public. We have learned to accept limitations and uncertainty in our lives whether for long stretches in the past, occasional flare ups, or our current situation. We may be faring better psychologically than many others for this reason. I think many of us are already taking measures to avoid illness too, so that is already second nature to us (washing hands, maintaining distance).
  14. He is a pediatric specialist. However he does also have patients in their 20s, 30s and 40s.
  15. Dear Members, Dr. Peter Rowe of Johns Hopkins University School of Medicine, has kindly answered some of our possible concerns regarding COVID-19 and CFS/OI. His statement can be found at this link:
  16. When I have a severe bout with POTS I have this symptom. My head would literally bob up and down when I had severe POTS 17 years ago. I also remember a swaying motion when I would sit certain ways that would come and go. It was scary. I am not sure what causes it but I think just out of balance sympathetic activity.
  17. I was told by my endocrinologist that cortisol levels bounce around all day depending on many factors. I had done a saliva test for cortisol at the time and it indicated my cortisol was high. There are specific ways to test for properly functioning cortisol response--I am not sure of the details. I would talk to her doctor or a specialist to get more understanding.
  18. So sorry your symptoms are not under better control right now. What does your doctor say? Do IV fluids help stabilize your symptoms?
  19. I agree. It's certainly not recognized as a therapy that is beneficial to POTS; no studies. Like many things seem to be, we all respond differently too. B/c of the likelihood of lowered blood pressure it would make sense to be cautious with this.
  20. Just wanted to share this with forum members in case it may be a therapy that is useful for anyone. I searched briefly and could not find research on the use of this therapy for dysautonomia, but it is used successfully (according to studies) to treat anxiety and depression and other ailments. The therapy has been studied for decades. Salt float therapy is gaining in popularity around the country, and we have a facility in my community. I had not thought much about it, until I started having another flare up and at a friend's suggestion decided to try it. I was a little nervous bc I wasn't sure what the warm water and weightlessness might do for my symptoms. They do warn that the treatment lowers blood pressure. In any case I went ahead and had one session a few days ago. Basically you float in a warm (not hot) bath of Epsom salt--the temp is just at skin temperature, it's not a hot tub. The feeling is amazing as it makes you completely relax, effortlessly. In addition you can choose to turn off lights and relaxing music and experience a stimulus free hour of floating. The sensory deprivation along with the relaxation is supposed to bring you effortlessly into a meditative state and deep relaxation. For me, I did not notice a change in blood pressure that was problematic. Did not feel dizzy etc afterwards. I did have a feeling of calm and well being and felt very relaxed afterwards. The next day, my POTS symptoms were greatly reduced, and this effect seemed to last over a couple of days. I wonder if the Epsom salts helped, along with the intense relaxation? I plan to continue to go once a week and see if I notice longer term benefits. Studies show that many weeks of multiple treatments are needed to treat anxiety or depression successfully.
  21. Hi Catherine Welcome to the forum although I am sorry you had to seek us out. Your symptoms sound like classic dysautonomia symptoms. For many people, and sounds like your mom is one of them, symptoms can wax and wane and do tend to improve over time and/or with treatment. This information may be helpful to you https://www.dinet.org/info/pots/ We would recommend you try to see a specialist and get a diagnosis and then of course treatment if you have not started to do so. We maintain a list of specialists here: https://www.dinet.org/physicians/ Have you tried adding fluids to see if that helps? Most people find some relief from extra fluids and salt. (But again it is best to get a diagnosis from a specialist rather than try to self diagnose and treat.) I hope you find the forum and our website to be useful and hope you starting feeling better soon.
  22. Do you think the fluids helped at all? It sounds like your symptoms did not improve. They may have not given you enough fluids slowly enough for it to be helpful. Most POTS patients do improve with IV fluids. When I am in a flare I get 2 bags over 4 hours. The slower rate is more valuable to helping improve symptoms. When I was really sick I was hospitalized and got fluids continuously for 24 hours. Can you talk to your doctor as a follow up about options for controlling your symptoms better? Maybe they can order fluids for you that you could get at an infusion center or such setting and on a slower drip. I would also talk to the doctor about other things that you can do or try (including meds) to reduce severity of symptoms.
  23. So sorry you are going through this. I am 51 and definitely in menopause now. I am not sure what the next few years are going to be like for me due to this. Two weeks ago I got a sinus infection and it put me into a downward spiral with POTS and also insomnia that I cannot believe would not also be related to menopause b/c normally I weather infections better than this. Anyway one of the things that helps me most is IV fluids 2-3 times a week, when I am having symptoms. My GP is so helpful and understanding about this, and prescribes them for me at the drop of a hat when I am feeling at all badly. I have learned from going to the infusion center that they are serving a lot of POTS patients there on a regular basis. It seems doctors have come to realize how useful this is. I agree w Pistol that it is important to be seen by a doctor knowledgeable about this condition and open to helping you try a variety of treatments until you find what is going to work for you. Most of us get better with proper treatment. Hope that you find some answers and feel better soon.
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