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  2. It’s strange how it seems to work for some people and not for others, although I suppose it depends if you are deficient before you start taking it. I wasn’t expecting it to work, but was desperate enough to give anything a try and have been pleasantly surprised. Also strange how it seems to cause your adrenaline rushes, but reduce mine.
  3. Today
  4. AmyK

    Panic anxiety

    Thank you. Good to know. Plan to get this on Amazon.
  5. AmyK

    Panic anxiety

    I look forward to Menopause passing ! Haha
  6. AmyK

    Panic anxiety

    Haha😅Yes. It does and I take very little and works. Also I take a little bit off a pill to help with sleep as well.
  7. have you tried ivabradine? That lowers the HR without affecting your BP
  8. Interesting as I've been a magnesium "fan" for years, even before I got diagnosed with POTS. Mag taurate and glycinate both keep me awake if taken at bedtime and cause adrenaline rushes. Malate seems to help with my muscle twitches and fibro though.
  9. DizzyGirls

    Dysautonomia hodge-podge—What about you?

    Sounds all too familiar!! Welcome to DINET! I'm a caregiver to my daughters who have it, in addition to Ehlers Danlos Syndrome. I remember when we finally put together that all of their symptoms were part of ONE thing. You feel like you are finally there! Now we usually look within the confines of EDS. It has saved a lot of time!
  10. DizzyGirls

    Severe bloating

    What about a different variety of bc pill. I know that some contain more of one hormone than the other and maybe a variation would help alleviate that. My daughters are so much better on bc, too! What a world of difference! One gets the depo provera shot because she gets bad migraines and can't have the estrogen, the other one takes Microgestin. Every month was just miserable before. I hope you find something that helps and doesn't upset your tummy!
  11. DizzyGirls

    "Outgrowing" Pots?

    I have a friend who is about 65 and she had a terrible time in her teens with passing out. She would be in class, at a restaurant, you name it, no place was safe. As she's gotten older she doesn't have that problem. She has been diagnosed with fibromyalgia, and has survived breast cancer. I would bet a lot of money that she has EDS as well, although she's never been diagnosed. Her daughter has a lot of GI issues and would highly suspect EDS in her, a sister has fibromyalgia and POTS, as well as a niece who has POTS (would suspect EDS in her also). That being said, she didn't do anything in particular to make it go away it just went away. I don't think, however, that you "outgrow" it. Like someone earlier said, maybe it just goes into remission. As for my daughters, their POTS is being controlled, but I don't think they will ever "outgrow" it. Doctors who say that usually don't have that much experience with POTS, they are just going by what they've read in textbooks or articles. We are all far from textbooks!
  12. Yesterday
  13. WinterSown

    "Outgrowing" Pots?

    Hormonal? hmmm. I developed symptoms well past my child-bearing ages. Many of us did. It's not a disease found only in women of child bearing age. Over 30% are diagnosed post menopausal. Doctors need to look at a wider spectrum of women, not just a wider spectrum of symptoms.
  14. In my experience magnesium is a decent laxative but doesn't have any other benefits.
  15. bombsh3ll

    "Outgrowing" Pots?

    This sounds ridiculous but it was a very forceful valsalva that triggered my POTS. I have two children & one day my dad came in with one balloon. I knew they wouldn't share so went and got what I thought was another balloon from the drawer and tried to blow it up. I blew SO HARD as my kids were screaming and fighting, I just wanted a balloon for each of them to keep the peace. Blowing so hard I passed out. At first I wasn't too worried, it is common for people to faint after straining hard. I lay on the floor, waiting to come around properly and the lightheadedness to go. It didn't so we called an ambulance. It never has gone away, and I haven't been able to stand for more than a couple of minutes since. It was 5pm on Monday, 4th August 2014. I remember the time on the oven clock as I lay on the floor. My life was taken away from me that day. It turned out what I thought was a balloon was actually a water bomb and I would never have been able to blow it up. I was a completely healthy 34 year old before that day. How I wish I hadn't tried to blow that thing up. I will never know if I would have developed POTS gradually or some other way had that not happened, but that's my story. I found POTS googling my symptoms in the few days after becoming unwell. My HR did the same thing standing. It took me 3.5 years after that to get a formal diagnosis though, and after that I saw a genetecist as I and other family members have some features of HEDS, so that was where I got that diagnosis. The musculoskeletal and previous surgical complications of HEDS are trivial for me though and I would never have sought a diagnosis of this if I didn't have POTS. I mostly pursued the EDS diagnosis in order to support my disability claim as POTS in this context doesn't go away, and although deep down I do not believe my POTS is secondary to this, it means I am recognized as having a permanent condition rather than something that might go away which is what people can be told if they have no other diagnosis, even though the evidence for it going away is scant.
  16. Womble

    "Outgrowing" Pots?

    I was diagnosed in my mid 40s and the dr traced my medical history to conclude I had my first symptoms aged 7. My son was diagnosed yesterday, aged 14 and has has symptoms since he was 11. We have HSD (one point off the new criteria for HEDS) and have been told it will be a case of management, rather than ‘cure’ for us, because of the underlying cause. I have been on Ivabradine for a couple of years now and it has helped a lot, but loses efficacy if I am ill or have a massive amount of stress to deal with. Over the years, the best times for me, symptomatically, have been when I was able to get and stay fit for a while, as obviously increase in muscle mass and skeletal pump effectiveness is always going to help people with an HCTD. Unfortunately, as you will probably know, it’s not that easy to stay fit all the time when your connective tissue has other ideas or you are too symptomatic to even begin building your fitness effectively (like my son at the moment).
  17. Womble

    Panic anxiety

    Not tried birth control (I am not allowed to take it due to vascular type brain lesions) but have found adrenaline/panic type feelings have massively reduced on a decent dose of Chelated Magnesium. I was very sceptical, but started almost a month ago and am shocked at how much calmer and less stressed I am. I am also sleeping much better and my scary night episodes have reduced in both frequency and severity. (I was having adrenaline/sympathetic surges repeatedly all night during my pre-menstrual phase and since becoming perimenopausal, that was 3 weeks a month and rising.) Might be worth a try? If you do, avoid Magnesium Oxide, as it will just upset your stomach and not get absorbed. Magnesium Taurate, Glycinate or Chelated are the best ones to go for. Some cardiologist are now saying that just about everyong would benefit from some degree of Magnesium supplementation for hearth and nervous system healthy.
  18. Jessica_

    Panic anxiety

    I have heard it works amazing for most people! I seriously just need to try it despite my fears of medication. Crazy to have anxiety over taking anxiety medication it’s madness! Have you found it helps with your attacks?
  19. I have been on Northera for about six years and I believe I may be getting some side effects
  20. Last week
  21. Interestingly, about three weeks ago I started taking Chelated Magnesium two in the morning and two at night before bed and have also found it really helps, particularly with sleep, a reduction in adrenaline surges and generally feeling calmer. My night episodes have dramatically reduced in both frequency and severity and my restless legs are significantly better, as are the muscle tightenings I was getting at night. I am diagnosed and clincially, still have POTS. I’m on Ivabradine and while it has really helped, I have been struggling recently after a very bad bout of flu back in February, on top of lots of stress and have found that recently the Ivabradine isn’t lowering my hr enough to reduce symptoms. I am hoping, if I keep getting better sleep, via the magnesium, that I will eventually be able to increase my exercise to improve my fitness and skeletal pump, which should help with venous return and hopefully help reduce the tachy. A few years ago I managed to get really fit and strong (it took a very long time and was anything but easy) and that is the only time I can remember my POTS symptoms being under what I consider to be a decent level of control. I really want to get back there and know it’s going to be a long journey - again - but am hoping that improving my sleep is the first step towards it and the magnesium definitely seems to be helping with that. Having said all that, my 14 year old son got his TTT results today and was also diagnosed with POTS, unfortunately for him magnesium hasn’t been as helpful. I do think he is sleeping a little better than usual, but he’s still so poorly that he is now being signed off school for the rest of this school year. We’ve tried all the usual non-pharm measures with him and while they have reduced the frequency of his faints, his exhaustion and autonomic symptoms have been crazy recently (actually since his TTT). We’re now waiting for him to see an EP to discuss whether it’s time to try medication and if so, which one. So it does seem what works for some of us, may not work for others - even when we are closely related and have the same underlying mechanism to our POTS/AD - in our case EDS/Hypermobility Spectrum Disorder.
  22. Not sure what’s in the eye drops they gave you but assuming that is a type of anesthetic, some of them have epinephrine in them which can cause a flare of symptoms. Talking to a doctor about the anesthesia options and how it reacts with dysautonomia may be helpful.
  23. Clb75

    Severe bloating

    Birth control expands blood volume which can be helpful in Pots. The other symptoms are still tough to deal with though. Hope you find something that helps.
  24. TCP

    Severe bloating

    Hi Amyk I get the whole bloating stuff, discomfort etc. I found cutting down on carbs and big meals helps no end. I also drink lots of fluids. I also re-jigged my diet and am no dairy, gluten, processed foods or sugars. I am vegan anyway but eating well. A lot of people with dysautonomia get bloating, gastroparesis and IBS. Nausea is a tough one and I get it every morning and it seems to improve when I have eaten a bit. I think I have the histamine/mast cell issues and that means a lot of food trigger problems. I have found Yasmina Ykelenstam and her website and Facebook page helps with the diet and eating well to keep well. I don't know if any of this helps, but it might be worth cutting out the carbs to begin with such as bread, pasta, potatoes etc. Good luck!
  25. My son has been getting zapped in an eye since he was four, he is now 35. He has been 'drilled' thousands of times. Ask the eye surgeon to do the procedure in a hospital or surgical center and knock you out. They will strap you into a chair with your head held in place. If stress is causing your eyes to jump around or you to faint then you need to be unconscious or in 'twilight sleep' for the laser, ask how it can be arranged. I don't understand your comment about that you can't go more than 30 feet from a hospital or you will need to have emergency surgery. You may be more worried than you need be.
  26. WinterSown

    Suddenly very dark urine.

    Call your primary and ask to come in and pee in a cup. It could be temperature related, you might have not drunk enough fluids for a while, or you ate something that is darkening your pee like asparagus. If you have it for several days you can be concerned but if its changing after a day or two then it's something to call or talk about to learn to avoid and not rush in for a visit.
  27. Maggie Franken

    Question about hyperadrenergic POTS and SSRI's

    Those patients who have POTS and autonomic problems should see a cardiologist and avoid psychiatrists, IMO. Psychiatrists don't know their drugs well and can do more harm than good. I suggest that you ask your cardiologist about sinus surgery too. In the meantime in my experience avoid most antidepressants, Afrin, betablockers and especially IV contrast.
  28. KiminOrlando

    Suddenly very dark urine.

    Or it could be how blood looks. I agree- go to the doctor.
  29. What kind of cortisol test did they do? Stimulation? A test in the afternoon? 8 in the morning? You can get totally different results with those tests. My 8 am shows I have Addison's, but my body 'cures' itself by the afternoon every day. My body spends every day trying to play catchup from my Addison-like mornings. My adrenals just don't get the signal to work in the mornings. The signal gets triggered around 11 am. I don't know why. Low sodium too, well, high side of low or the lowest number in the normal range every time. I am considered low flow POTS too. I have been searching for answers for 10 years. I'm so much better than I was, but there is still a tremendous amount we don't know about my diagnosis. I hope you get some answers with endocrine.
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