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  3. I also have good and bad days. And I have good and bad seasons. And good or bad years. I suspect that there is some kind of "unstable equilibrium" phenomena in our autonomic systems. That is, our autonomic systems respond to the variable stressors by striking up some kind of equilibrium, which is sometimes good for our functioning and sometimes no good. I've noticed that after I exercise, I may be tired for two days. I tend to feel worse when I fly, but once I flew to Orlando Florida and when the plane landed I was electrified with energy and went sprinting through the airport. Nothing makes sense. It is crazy and frustrating.
  4. I'm more hopeful in answer now and happy that it's not "all in my head" like some have thought. I feel like we have found some of the pieces and are slowly putting the puzzle together.
  5. Possibly because he does not know hoe dysautonomia works? My urologist does not have a clue and always asks me or my PCP before ordering a med for my IC b/c he knows nothing about POTS. I really prefer that in a physician - I do not expect every one to be an expert, but the least they can do is admit it!!!
  6. It’s actually been very helpful for my low BP and fluid volume. You just have to be really careful not to drink too much unsalted water. I wouldn’t think it could increase other med' s activity on its own, but the brain changes could certainly make you feel weird. I just feel off, get a headache, and nausea if I’m starting to get hyponatremic.
  7. @Starrynight - I am glad that you found some answers, although I wish they were better news!!! Thankfully AT ( or SVT ) can be treated with medication or ablation, and your EP ( the cardiologist you were referred to ) will know what to do. And the best news is ( drum roll ) - you may not have dysautonomia 🥳!!! But keep in mind that the symptoms you describe CAN be from POTS, and your EP may not be confident in considering this as a secondary diagnosis. Symptoms of AT are close to those of POTS, except that they do not necessarily include orthostatic intolerance, which you describe. I know of several people who have both - POTS and SVT. I hope you find a knowledgeable and compassionate specialist and please keep us posted on your progress!!!!! Here is a list of symptoms of AT: Atrial tachycardia may cause the following symptoms: Chest pressure or pain Fainting, also known as syncope, or near-syncope Fatigue Lightheadedness or dizziness Palpitations, which can be skipping, fluttering or pounding in the chest Shortness of breath It is important to note that some children may not know how to describe what they are feeling during a period of atrial tachycardia. They may have trouble keeping up with other children or realize they are having "spells" and want to sit
  8. @Nin - that was fast!!! I am glad you got to talk to him and I hope any advice he gave you will be fruitful!!!
  9. So I have an update from the test. Two days after the test the nurse called and said that the Dr saw some EKG changes and wants to repeat the test but with an echocardiogram. So I will be doing that next week. Then today she called again and said that the 14 day monitor showed atrial tachycardia. So hes also setting me an appointment with a specialist in the same office. This specialist is for the electrical part of the heart? So, I'm surprised but not surprised that he saw some things. I guess now I'm just wondering how serious all this will be. I don't know if any of this will point to POTS or maybe this will be something separate from it. I'm going to try and put together notes of everything I've been through for the visit with the specialist. If they can't figure it out they said they would find me someone who will. At least now I can feel more confident that this isn't just anxiety.
  10. I just bought a diary, I will start writing. I think I need to learn to accept my condition, but I just can't. Maybe I will one day. I think if you learn to accept, the bad day's won't feel so bad. Then like you said enjoy the good days. No problem here with insect bites....it's pretty cold at the moment 😟 Well I did speak to Dr Gupta after so hopefully when I do get more medication I will feel a lot better. Thank you 😊
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  12. @Nin - the Ups and Downs of POTS are ( unfortunately ) part of the deal. It took me years to understand that feeling good does not mean I am cured - and getting bad again after a good spell does not mean this is it from then on. There are so many triggers that can set us off - weather, diet, heat or cold, stress, illness, too much or not enough exercise, allergies, overstimulation … the list seems endless 😕! I kept a diary of my days for a while and figured out some of my triggers. There are different ones each season - right now it is insect bites and allergies, as well as heat intolerance. And sometimes I can just tell that after 3 good days I am due for some bad ones soon … the trick is to enjoy the good days and be hopeful on the bad ones. Hang in there 🤗
  13. Just wondering if anyone can answer this. I had 4 decent days (hardly any symptoms) and then the past two days have been terrible! How can that happen....what changes in the body to make you feel so ill again. The good days I didn't over do things. Is it because the ANS decides to just start dysfuntioning again. I just feel like I can't even stand today. Pots is so debilitating I still can't get my head round it all.
  14. Yes I figured out it was hyponatremia and called my PCP. We're basically waiting on the labs I got drawn this morning. Terrible terrible disorder. Do you guys know if it can increase your other medications, especially psychotropic meds? I'm going to contact my psychiatrist. Thank you. I have no idea why my urologist put me on this knowing I have dysautonomia.
  15. @CallieAndToby22 - I agree with @RecipeForDisaster. Hyponatremia is a side effect of nocdurna and symptoms you describe could be it. According to the official Nocdurna patient information website your symptoms NEED IMMEDIATE MEDICAL ATTENTION. Please contact your PCP immediately or go to your nearest ER or clinic. They can check your sodium level and correct any depletion. What is the most important information you should know about NOCDURNA? NOCDURNA may cause serious side effects, including low levels of salt (sodium) in your blood (hyponatremia) which may be life threatening, causing seizures, coma, trouble breathing or death if not treated early. Stop taking NOCDURNA and call your doctor if you have symptoms of low salt levels in your blood: headache, nausea or vomiting, feeling restless, tiredness (fatigue), drowsiness, dizziness, muscle cramps, change in your mental condition such as hallucinations, confusion, decreased awareness or alertness. You should not take NOCDURNA if you are at risk for low salt levels in your blood, such as if you drink a lot of fluid or have illness that can cause you to have fluid or body salt (electrolyte) imbalance or, if you take certain type of "water pill" called loop diuretic or glucocorticoids including inhaled steroids. Tell your doctor if you have a fever, infection, or diarrhea while taking NOCDURNA as these can cause you to have fluid or electrolyte imbalance. Your doctor should check your blood salt levels before you start or restart, within the first week and 1 month after you start taking NOCDURNA, and every so often as told by your doctor, with testing more often if you are at risk for low salt levels, such as those 65 years or older or take certain medicines that increase your risk.
  16. I use DDAVP and all I can think of is sodium depletion. That could make you drowsy. Mine is a different formulation, and I take it during the day to raise my BP, but I have gotten close to that when taking doses near the max I’m allowed.
  17. Yea it doesn't stay long. But honestly nobody is helping me. I'm not sleeping, I'm extremely over sedated, I feel very very depressed b/c I can only lay in bed. Passed out twice. It has done something with my medications. 5 days off it and no better. I need help. I can't even start cancer treatment until this is taken care of.
  18. On my second year taking Metoprolol 25mg. My feet and ankles are swollen (lasix is not working anymore), I am awake all night long, I gained weight, I have anxiety and chest pain. I want to stop taking it right now. I feel like the side effects are awful. Oh, and I am bloated, weak, and constipated. This is a nightmare.
  19. No, it was poorly worded. It is good to know they can sort stuff like that out instead of just looking at an elevation and assuming. I have a ground glass pattern in my lungs from RA, plus IgG elevation made me concerned that was enough to make a diagnosis since these test seem to be somewhat unreliable.
  20. I'm sorry. I didn't mean to sound like I thought your question was poorly worded. I really just wanted to find out what you meant by IgG positive. *I* should have worded better.
  21. Every day brings its own adventures. It's up and down. Better days and not so good days. Pay attention, see what your body is trying to tell you. Notice what seems to help and what doesn't. And the gut plays a huge part. Notice foods and see if that plays into the picture. A good part of the immune system is in the gut. Be thankful for those better days!!!!!
  22. Interesting, I don't like breathing out, so breathing 1:1 is usually much easier than 2:1. You can also speed up your breaths or your counts and that also helps to achieve the ratio you want. Over time you get used to it and you can slow down naturally. Absolutely! I am in the early stages of experimenting. For whatever reason 1:1 has always been agonizing for me. I do wonder if my seemingly-unusual comfort zone of a 5 second inhalation, 5 second hold at full, 10 second exhalation, 5 second hold at empty, might be suboptimal. I remember when my POTS symptoms were the worst in adolescence, I had INCREDIBLY SLOW and uncomfortable breathing. I would basically hold my breath between each breath...I wonder if I was unconsciously doing that to raise my blood pressure!
  23. Has anyone had spells of POTS suddenly improving in terms of heart rates? Last few days when I was very fatigued from poor sleep oddly my POTS was improved. I had standing pulse rates in 70s for first time in years. Seemed almost like I had just bad ME and not ME and POTS. Not sure what has changed. I'm suspecting my stomach issues are a factor in my POTS ie when I have more bloating the POTS is worse. Also I've been hydrating even more than usual. Today I'm a lot more energetic after better sleep but POTS and stomach both worse. Odd.
  24. @CallieAndToby22 - could it be that nocdurna ( I am not familiar with this med ) stays in your system for a while and continues to interact with your other meds? Have you checked how long it stays in your system?
  25. Hi, welcome to the forum. We get tons of people posting here who aren't sure if they have POTS, so that is no problem. So sorry you are going through this. Positional symptoms definitely are a strong sign of dysautonomia (though doesn't 100% mean you have dysautonomia). Post-pregnancy is a major time when people develop POTS, so that also seems like an important clue. Are you seeing a doctor on the DINET doctor list? If your doctors are stumped or aren't a right fit that would be the place to turn. You may want to search for a doctor's name on the message board or post about them to see if others have experience because some are better than others. Food intake (volume and type of food) is most definitely related to dysautonomia, so your doctor is wrong about that part. If you are triggered after a large meal, it would make sense to start eating smaller meals and also keep a diary of what you are eating. You may notice your symptoms correlate to certain foods. Some here have food insensitivities and feel tons better when they cut out wheat or dairy. You can tested for those, but start by just watching what you are doing at home. One other thing to note is that beta blockers themselves cause fatigue. So if you are feeling really tired that could be because of the beta blockers. The fatigue as a side effect wears off over time. You can also make it better by taking at night instead of during the day, though check with your doctor on that before doing. Also check the other side effects of your medications because they often contribute to the problems. It is interesting that you describe your symptoms as feeling like you have the flu when standing up. I have never felt that way - the POTS feeling for me is totally unique and like nothing I've ever felt before. Certainly not like the flu for me. I felt like I was walking on an unstable surface, or being chased - sweaty, out of breath, scared, but not flu like. If you have muscle and joint aches it might make sense to look into EDS. I definitely have muscle aches but they are not positional. They're from a lack of blood flow and are constant in every position for me. Sometimes I feel normal lying in bed but when my dysautonomia is acting up I feel pretty terrible even while lying down.. Stretching, yoga, self massage can be really helpful for the muscle aches. I would try to do this a few times a week (or daily) if you can manage. Practicing walking - as painful as it is - also adjusts your body to being in an upright position. The stress test is extremely important because it will help detect any problems with your heart. Everyone's heart rate goes up with exercise that is normal, and not anything to worry about and you are right there with the doctor. (Remember, millions of people exercise for the very purpose of getting their heart rates up) if you have a cardiovasuclar problem which isn't POTS, that could actually be something which is much easier to treat.
  26. After a trial with nocdurna my medications are suddenly all very very sedating. I'm sleeping all night and day. I can't stay awake. I guess I have to break everything down to miniscule pieces. I will call my psych. Has anyone had this happen? It's very odd.
  27. Interesting, I don't like breathing out, so breathing 1:1 is usually much easier than 2:1. You can also speed up your breaths or your counts and that also helps to achieve the ratio you want. Over time you get used to it and you can slow down naturally
  28. @toomanyproblems. Thanks. That answers my poorly worded question. Thanks for sorting it out.
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