Glassywood

Several years ago I was diagnosed with fibromyalgia and dysautonomia but never pass out. Just all kinds of ongoing symptoms of which now there is a new one. I am extremely cold off and on throughout the day. Yesterday my O2 level bounced around so much we called EMT’s. They checked me all out and no signs of heart issues but were amazed at how cold my hands were. I feel unwell much of the time but try to stay busy as best I can. If I overexert I can have horrible bouts of IBS-c, fatigue and foggy brain. None of the EMT’s ever heard of dysautonomia which came as no surprise to me. Just wondering if anyone else has similar issues with extreme sensitivity to cold as well as low O2 level that comes and goes rapidly. So many strange symptoms all these years. Thanks very much and wishing you well.

Thanks, Pistol, for your response and info. Much appreciated.

Thanks for your response. I guess I could say I am glad I am not the only one, but having said that, I am sorry you suffer this as well. Best to you.

Does anyone else have strong reactions to barometric pressure change especially when the wind blows? This seems incredible to me that my body can be this unbelievably sensitive. Thunder storms bringing rain I can understand, but simply the wind?! I do not need to see trees blowing, etc so symptoms are not caused by imagination of what I am feeling. I can be in an area with no windows whatsoever and suddenly become very unwell and achy all over. Thank you.

Hello, I was diagnosed with dysautonomia by my cardiologist 6 years ago at the age of 69. Tests were run including tilt table which I failed. I do believe I have had dysautonomia, POTS, most of my life but was never diagnosed correctly. I saw many doctors but was not diagnosed until I saw a cardiologist. Every individual is different so I can only tell you that for me, POTS has gotten worse with age. I however have not been a severe case, have always been able to be up and about and exercise by taking a short walk daily. So, I wonder if a lot has to do with a person’s case severity. My worsening of symptoms may be very minimal compared to another’s which have all along been more severe. Best of luck to you.

Thank you, Roxie. I began the trazodone after the dumping episode so the drug was not the issue. I have had “dumping” several times before and when I was not on any pharmaceuticals. I am so extremely medication sensitive that the only thing I take is synthroid for hypothyroidism. I appreciate your info on the herbals. Thank you also for the website info. May I ask how your sleep was before you began the herbals, in other words how many hours a night on average. Glad you have found something to help you. Pleasant dreams!

Suddenly this week my POTS has upped the game. I am 75 years old and have dealt with a multitude of symptoms for a very long time and finally was diagnosed by my cardiologist after failing the tilt table test about 6 years ago. Recently I have been having episodes of what I believe to be dumping syndrome for which I just yesterday realized there was a name. It hits out of the blue with my first feeling quite unwell and very tired. This past Monday after an episode where I am sure my entire colon was totally, rapidly emptied my BP rapidly dropped to 64/50. In all the years of POTS I have never passed out though I have come close. My understanding from my cardiologist is that one does not have to pass out to have POTS. It took several hours for my BP to become “normal” again. I have blamed so many of my symptoms on the fact that until my cardiologist put me on very low dose trazodone, I have survived on rarely more than 3 to 4 hours of sleep. I am EXTREMELY medication sensitive so always refused meds. The low dose of trazodone, 1/2 to 1/3 of a 50 mg tablet) has indeed helped me sleep though the side effects so far are not pleasant. But real sleep is incredible. I would find it helpful if anyone else has found anything that prevents or even helps with this awful dumping syndrome. Thank you very much. Diner.org has been a huge help in educating me and my husband.

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 though not always easy! Thank you for your sharing and I am happy you have found things that are of help to you. Best of luck to you with your new therapist.

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.

Thank you for your response. I am very sorry that you have had such ongoing difficulty with anxiety issues. I, too, find great comfort from my sweet little pup who seems so capable of reading my emotions. Recently I have been able to actually do a bit of gardening in the way of pruning bushes, something I have not been able to do for a number of years. It has felt wonderful to be in the sun and helping my husband with yard work as he does all of the major housework. The outdoor work has greatly helped my anxiety for at least some of the time for which I am very grateful. Over the years I have found that this particular symptom of anxiety really raises its head in the springtime. It is very cyclical in nature. It sounds as if you have worked very hard on your various issues. I hope your hard work will bring you peace and restored health.

Hello, I have followed this dysautonomia forum for a number of years without ever joining. I was diagnosed with dysautonomia about 6 years ago by my cardiologist after failing the tilt table test ( where my BP plummeted but I never lost consciousness), and my cardiologist’s diagnosis given my symptoms. I have never passed out like so many others with this, but have been diagnosed with vasovagal syndrome (rather than syncope due to never having fainted). I have interstitial cystitis, IBS, RLS, fibromyalgia, hypothyroidism, and crazy symptoms that take turns making life “interesting”. Due to bi Gemini PVC’s and bradycardia I had a cardiac ablation three years ago. I am probably one of the oldest members here and believe I have had dysautonomia for many, many years. That is my background info. Right now I am seeking information from others regardless of age as to dealing with anxiety which I firmly suspect is due in very large part to my nervous system not working as it should. I consider myself extremely fortunate to be able to be as active as I am, but the older I get the harder my symptoms become to deal with. Anxiety is my biggest and most difficult symptom at the moment for the past several months. I am extraordinarily medication sensitive so other than medication for hypothyroidism and ibuprofen for OA I take no prescription drugs as I am highly allergic to many and side effects in general are terrible. My immediate questions: does anyone else have intensified tinnitus when your anxiety heightens? What about muscles pain and tingling, for lack of a better word, with increased anxiety? Super brain fog? Anxiety that really worsens with barometric pressure changes? Anxiety worsening far more than is “normal” with life’s ongoing challenges? Worsening of many previous symptoms? Thank you very much for any responses. Very glad to be here. Glassywood