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  2. Hi,did you ever get any answers for this?also have you ever suffered any concussions?
  3. I take 10 mg. of Propranolol, a non-selective beta blocker, once a day. My POTS doc, who is a neurologist, actually wanted to start me on 20 per day and I asked if I could start with 10 and move up if need be, and he was fine with that. I started with the 10 almost three years ago and so far, so good. I saw where you were taking that but it didn't seem to help you, but you'll find by reading the posts on here that the same beta blockers (and other meds) do not work for everyone, and some people have to try out different BBs or other meds before they find the right one/combination. I'm wonderin
  4. Thank you both very much for the replies! Yes I suspect it's more of a hormonal problem, and I suspect I am in adrenal crash from a long time. My doctor prescribed me propranolol for the dysautonomia and remeron for sleep, but I am getting worse, pots is worse, remeron stopped working. If I do get to sleep I always wake up after a few hours not only unrefreshed, but also in fight or flight mode every day. I don't have sleep apnea so I am still wondering what triggers the stress response while I sleep. I am also 100% sure this exhausted my adrenals, because I have all the symptoms and I have re
  5. I agree with Pistol they should have given you fluids, and you would have been justified to return. I'm wondering if you have been able to try IV fluids as a treatment. I hope you reported this driver to Uber. That is a terrible experience.
  6. So very sorry for all you are going through right now. It's a huge stressor when a serious relationship ends. I've seen quite a few patients on the forum have symptom improvement as they got older. So you may very well see improvement in time.
  7. Yesterday
  8. During our teens and 2os, we care less about our body, our life in general but once we hit 30, we realize a lot of things. That's when we rush to put things all together, and we feel the pressure and the stress, then there comes the illnesses. I think mostly, it's all about the stress of the challenges we had during these years. What do you think? What was the most stressful or challenging thing that happened to you that you thin contributed to your illness? How did you cope with that situation?
  9. It's hard dealing with chronic illnesses because it's just not the physical that's affected. It goes with sleepless nights thinking how much time we should have spent doing more than we did, the time we have left, the changes in our loves, and so on. It never ends. I just pray or everyone here.
  10. Hi there. It's really hard to adjust to the changes in our bodies. I haven't had any issue with my eyesight. I have a friend who had what you described. Hers is different though. Been going to the ophthalmologist for some time but getting worse only to find out that she has brain tumor.
  11. Thanks @JyotiI was able to see a new chiropractor last week and x-rays showed my neck and spine are in bad shape. I asked her about the device and she told me to hold off for now and see how I respond to few treatments before we come back to it, Really appreciate you following up.
  12. @peachychou123 I will send you a pm. You might want to read this: You’re Not Alone: Understanding Depression and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET) I Can't Just Relax - Understanding Anxiety and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET) What's Next? Coping with Uncertainty When You Have Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET)
  13. Wow, we have very very similar stories. I got sick at 17 too and prior to that I was super athletic and musical and sociable and tons of water sports and hiking living in Florida. I understand much of what you describe. I've been in some long term relationships but my health is difficult or the person can't handle it. My high school sweetheart and I dated for 4 years and always talked marriage but one day he's like, "I thought you would get better and you're getting worse" and that was it. And I've gotten better and worked really hard at something else and then now I'm bed bound and like you s
  14. Hi, @Teodor, I do not have EDS, but this was certainly the case with me, and I think it's actually pretty common in people with POTS/dysautonomia. My symptoms were always worse in the morning and then, by evening, it often was almost as if there were nothing wrong. My understanding is that this happens because being "up and moving around" all day (basically exercise), to the extent that one is able, improves blood flow vs. laying in bed all night, and blood flow issues cause a lot of the symptoms. Once I was diagnosed and prescribed meds, my symptoms improved greatly (knock wood)!!
  15. I don't know. Mine tend to get worse at night. Could it be hormonal? Or medications you take?
  16. Sorry if this is very long. I’ve been struggling with POTS since I was 17 and I am 28 now. Like everyone I go through crashes and other times when I feel okay. At times it’s hard not to ask ‘why me?’ I had sudden onset POTS and went from being a healthy active sociable teenager to bedridden overnight. I often feel like I was robbed of my youth even though I try not to see it that way otherwise I will become too bitter. While my friends were out partying and meeting people and having fun I was either on the couch or in bed crying wondering what was happening to me. It took me 5 years to ge
  17. hi @Knellie - I don;t have any Input on MCAS but the above symptoms could be Reflux related. I know several people who saw an allergist for those exact symptoms and he said it is reflux. My F-I-L also has this ( throat burning and feeling like it closes up ) as well as cough and it is GERD. Since you have eosiniophilic esophagitis - could that be the case for you?
  18. Hey Everyone! I just have a question for all of you with Mast Cell Activation Syndrome. You see, I have had eczema, "asthma" (not sure what it actually is, but that is what the docs call it. Albuterol doesn't help and when I have an "asthma attack" it feels like my throat is closing up and my throat burns. Who knows really?), I get stuffy noses often, and my doc thinks I might have eosinophilic esophagitis. I am not sure if these are MCAS symptoms. They seem like an allergic reaction to me but I really don't know much about MCAS. On top of that is of course the dizziness, headaches, ta
  19. Well - I am considered fully disabled, so I am homebound. But with help of meds and IV fluids ( I have a port and get fluids when I need them ) I have been able to avoid seizures and syncope ( which I used to have all of the time ). I can pretty much take care of our household chores but my husband does all of the driving and shopping. When I have a good week I can garden ( my passion! ). Compared to what my life used to look like I consider myself lucky, and I feel pretty independent. Regarding sleep - insomnia is a typical problem of POTS and it is hard to get ahold of as long as the P
  20. Hi there, I'm 36 yo and have vascular ehlers danlos syndrome. I have a question that is bothering me for many years: why most of my dysautonomia symptoms, including pots and the severe fatigue miraculously disappear at night time? Can anyone relate?
  21. Last week
  22. @Pistolthank you so much for taking the time to respond. It really is very encouraging to hear that you live a very fulfilled life despite the challenges. If you don’t mind me asking, what does your life look like now? What are your limitations so to speak? I am in the process of getting an appointment with a rheumatologist to investigate AI issues. One final question, I have been having a lot of trouble sleeping lately. It seems to be a mixture of anxiety and the adrenaline. My GP has given me a benzodiazepine to assist but has stressed it is only a short term solution. Any su
  23. I find it so interesting that there are so many similarities as my own in the responses I am receiving. I have never been able to do breathing exercises as they do worsen my anxiety. I have also found Toni Bernhardt’s book helpful. Distraction is indeed a major key to the dilemma called anxiety. The hardest times are those that come when I am unable to easily distract myself. I try to remind myself that this is my life, that it is what it is and I must find ways to navigate the “ weirdness” of some of the things that my mind and body now encounter as I age. Remaining positive is paramount thou
  24. Thank you very much for your reply. Like you I have found that allowing myself to relax is often a help with the anxiety. I failed to say I am 74 years old and had always led an active life as an artist, often pushing myself to the point of utter exhaustion because I had no idea why it was so difficult to keep pace with my peers and because I had a business to run. I am grateful for your suggestions of information resources. I will check them out. It is wonderful to be getting such compassionate feedback. Thank you! I wish you well.
  25. I am so sorry that you are struggling with this. I am 59 years old and have been in full blown dysautonomia for 6.5 years. Like you, I find it increasingly difficult to deal with stressful things as I get older and have noticed that my healthy family/friends also do so. Maybe it’s part of aging to some degree? I have hyper POTS, OH, extremely labile blood pressure (supine hypertension, OH), autoimmune disease etc. This past year has been a very anxious one for me. I find an alpha blocker for the excess norepinephrine, exercise, nature, hugs, dogs, weighted blankets, just having a prescription
  26. Now that I think about it I think I see why my blood pressure was a bit out of whack. Yesterday I had a pretty rough morning and cried for a few hours, crying tends to really wipe my energy levels, as well as dehydrating me/losing salts. I drank a lot of water then tried to salt load a few hours later instead of mixing the water and salts properly. Which might explain the high diastolic and somewhat high systolic and feeling rough, too much water and too much salt both make me feel crappy. I have also been laying off carbs recently, because they worsen my tachy. BUT...I also think t
  27. Yeah honestly my BP concerned me. I have slight hypertension and usually have a very wide pulse pressure (like 50-55, normal for me is 135/80) so no idea why I only had a 12 or so last night, I was worried something was up and have no idea what may have caused it, aside from mild dehydration. I dont know if maybe it was a faulty reading because I was bending my arm at times? I even asked the doc if they were gonna take it again and he said there was no need. I said something about pulse pressure to the nurse and she just stared at me like what? My BP is kind of loopy sometimes. Basically they
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