mancmm19

Hi again! Since coming down with a bad virus in the beginning of October, I have seemingly been on a major flare since. Although my POTS and Dysautonomia symptoms have definitely gotten worse, I'm also currently undergoing testing to find out whether I have an autoimmune disease (all blood work as of now points to yes, although it is being considered an unspecified autoimmune as it does not fall into a major category like Lupus, Sjogrens, MS, etc.) Now to my question...One of my chief complaints is the daily fatigue and malaise that I feel, even while resting and my blood pressure is okay. After having POTS/ Dysautonimia for so many years, I can pretty much recognize the daily symptoms, triggers, and episode symptoms but am curious if anyone else has a daily malaise and feeling of just being unwell? I am trying to determine if this symptom is from the autoimmune or is actually a dysautonomia symptom. It has gotten significantly worse since October (I cannot work and have basically been house-bound) but the fact that I feel this way when my blood pressure seems okay sometimes has me wondering. I cannot even fully describe it but for a majority of the day every day, I have little energy and just feel like something is wrong inside. I don't feel like my healthy, normal self. If you can relate or have any advice, it would be very comforting to me if you can briefly share! Thank you

Hi! After a bad virus in October, is have been in a Dysautonomia flare up ever since. It is so severe that I was forced to move home to NY with my parents so that they could help take care of me. Through many blood tests, I have been diagnosed with an autoimmune disease, even though it doesn't fit into any of the typical AID such as lupus, RA, etc. All signs pointed toward Sjogrens but then my lip biopsy was negative. Anyhow, both my Neuro and Rheum have suggested IVIG as the treatment to control the inflammation in my body. However, it was denied by Cigna as I apparently did not meet the diagnostic criteria. We now need to get a lawyer as the treatments cost approximately $10k a session and I'd need 4 sessions a month. I hope to hear that your ivig is approved and that you find some relief! As far as I've been told, although it may or may not work, the side effects are minimal and not life-threatening (nausea, migraine, aseptic menegitis at the most severe.) Good luck!

I just did a little research and couldn't find much on the diagnostic criteria but did read about all of the research being done. Being CFS is thought to be inflammation of the central nervous system, I would assume that many people who suffer from dysautonomis have some type of symptoms related to CFS and visa versa. Very interesting. I am going to ask my rheumatologist about it and thank you for the info!!

Hi targs66! Yes! You are exactly right, laughing, being startled, talking, all induce a similar reaction. It's so hard because laughter is supposed to be the best medicine!! Not for us I was diagnosed with POTS by TTT although I was not injected with anything. I also have NCS/NMH triggers so doctors say I have a compilation of different types of autonomic dysfunction. I wonder if the talking trigger is more of a NCS symptom? Do you mind telling me what some of your other triggers are?

Hi Goschi! Thank you for your reply and well wishes I am very comforted to hear that your symptoms dissipated after some time. Unfortunately, I'm going on 6 months but I'm hoping the end is in sight! I know this doesn't seem like a POTS issue so that's why I just usually say I have dysautonomia in general. However, I do get a bit of tachycardia after talking so maybe it's all one-in-the-same. I do take .25 or half of a .25 on occasions where I feel very ill (like verge of a POTS attack type-of ill) or if I'm anxious about something, like going for a long car ride. However, I was prescribed Xanex about 5 years ago and RARELY took ok. I think my first bottle of thirty pills lasted about 5 years and I recently had a refill. Now that I've been a lot more symptomatic, I do take it more frequently but I'd say only 2-3 .25mg pills a week. Being its such a small dosage taken infrequently, I dont think its from any type of Xanex withdrawal. I don't like taking it or medicine in general because I am overly worried about becoming dependent on it so I try to take as little medicine as possible. I was on Wellbutrin for 3 years, it really helped me get some quality of life back the first time around, and was weaned off while I was in the hospital back in December, but I had no withdrawal symptoms (I was only on 75mg, 1x day the entire 3 years) and this talking trigger was present before I stopped that. I wonder if this is a rarer Dysautonomia trigger and it just happened to coincide with your tapering off? It's so hard to find a reason and trigger for all of this stuff because it seems our bodies are overly sensitive to just about everything! Happy yo hear that you're doing much better though

Sunshinegirl, you are exactly right. I am trying very hard to just be the listener but even that causes me to become symptomatic after a little while! It's hard because so many people ask me how I'm doing (they know I've been ill) and I always feel bad giving them the old "hanging in there!" without elaborating. Thank you so much for your encouragement and I definitely need to adapt to my new triggers a little better.

Hi @dizzyallie, and thanks for the prompt reply! ME/CFS has always been thrown around in conversations with my doctors but I was always told that there is no test for it and it's just a "catch-all" syndrome when there's no easy diagnosis. Sometimes doctors are so close-minded! If you don't mind my asking, how were you diagnosed with Chronic Fatigue? I've often wondered about it being a lot of the symptoms overlap with Dysautonomia and Lyme. Are you on any type of treatment plan to help with your symptoms?

Hello Everyone! I haven't posted in a while because I seemed to find my new "normal" for the past 3 years and was able to get through each day with a modified lifestyle. However, I came down with a very bad virus in the beginning of October which caused a POTS attack and I've been in a flare up ever since. I am now more ill than I ever have been and am trying very hard to get through this. I've been forced to move in with my parents to help take care of me and am basically house-bound. Being I cannot leave the house much, I have had a lot of visitors or people calling me on the phone, which leads me to one of my worst triggers. I know I created a post about this years ago but this symptom is now one of my most debilitating and I'm hoping that y'all have some advice! I cannot seem to hold a conversation without getting very symptomatic. It's usually triggered by my talking but then, even when I stop talking, it's like I get overstimulated from listening to the other person. When I talk, I start to get a building pressure in my head, followed by internal tremors, chills, and teeth chattering. I begin to feel like I'm going to faint so I then need to lay completely flat and silent. With friends and family, I'll tell them I can't talk (they know the drill) but then it's as if I can't even be involved in the conversation any longer. Even if I don't speak and just listen, I'll feel very "overstimulated" (I guess?) and get the same symptoms. I'll need to break eye contact and I find myself doing things like checking my phone or anything I can do to distract myself until the conversation is over and I can excuse myself. This sounds weird, but im pretty sure the look on my face even changes. It's like I lose the ability to maintain composure and act normally. The only thing I can imagine relating it to is feeling like I'm going to have a seizure (I've never had one before.) Does anyone else experience this?! This used to bother me sometimes but now it's to the point where my mom needs to talk to the doctors for me so I feel even more symptomatic and my friends and family know conversation is limited. Kind of sad feeling like I'm also losing the ability to express myself in addition to everything else I've lost control of Laughing has always triggered the same symptoms but I've learned to master a quiet giggle I should mention that I'm on .2mg of Florinef and .25 mg of Xanex as needed (this xanex seems to help a tiny bit sometimes but definitely not enough.) Thanks for taking the time to read this and please let me know if I'm not alone!

Thank you!! I'm a little nervous but doing surprisingly okay so far, I have a feeling the panic will set in once I board but I'm going to try to keep calm. I've printed this thread out and am going to do all of your tips, I'll let you know how it goes! I just have to trust that if I get those sensations, they will pass in a few minutes. The things we have to do to get a little vacation time!! p.s.- I'll be waving so look out for me

Thank you so much for the great tips! Thankfully, I'm flying out of a smaller airport tomorrow so there won't be much of a wait or standing time in security, etc. I have someone to carry my bags for me and it isn't a far walk from the car to the Southwest terminal. I'll be wearing my compression stockings, using EarPlanes, taking .50 of Xanex, Meclazine for motion sickness, and bringing pedialyte packets to fill my waterbottles with after security. I don't know what more I can do, I guess it's in God's hands from here on out. I'm not scared of the plane ride itself, but whatever that intense adrenal surge/extreme pressure feeling was shortly after they said we could take our seatbelts off. I can't imagine feeling that way ever again, especially on the way there tomorrow then home on Monday night and then going back to work Tuesday morning! Whatever that sensation is feels like death to me, and being stuck on a plane for the duration of a flight (without oxygen I might add as Southwest does not carry it) is the definition of a true nightmare to me. I'm hoping that I'll have a great experience and that it can somewhat erase the previous flight that scarred my memory. Wish me luck!!

Thank you so much for your responses! Although I never wish this upon anyone, it makes me feel so much better to know I'm not the only one and that other people have gotten through it. Avais1- your post was wonderful, I appreciate it more than you know. I know that I will certainly do everything you said and I'm sure others will too! And congratulations to you for flying so often with this condition!! You are living proof that POTS doesn't have to run our lives due to fear. Quick question for you because you have some great tips and plenty of experience...sit near the wing as you said or the bulkhead seat? I "sat" near the wing going to Mayo Clinic, although my boarding pass should've really read "floor of galley" because that's where I spent all of my time! I heard that the bulkhead seat in the very front of the plane has a lot of legroom and that if I felt like I was going to pass out and needed to lay down, I wouldn't be blocking the stewards and their snack carts I know you said sit near the wing but have you ever sat in the bulkhead? Which do you prefer?

Hi everyone, please help!! I have to fly to Orlando from New York on Thursday, a 2 hour and 45 minute flight, and then return to New York on Monday (little time to recover.) I had a really bad experience with flying to Mayo last June that required weeks of down-time before my flight home and then afterwards as well, and I’m terrified of the same thing happening. I flew a smaller Delta plane to Minnesota and am flying a Southwest Boeing 737 to Florida. Does anyone have any preference on the way big planes affect us vs. smaller planes? I don’t know whether it was the altitude, the way the plane was pressurized, or some other factor but it was the worst day of my life. I had drank plenty of water and salty foods and had taken .75 of Xanex prior to departure to calm any possible nerves, but what I experienced on the plane was simply not related to panic. After we took-off, I thought I actually beat any sort of symptoms and said to my Mom, “I did it!” when BAMM, out of nowhere, I started feeling extreme pressure on my body, like I sometimes feel in elevators, and felt as though I was on the verge of passing out. My face started tingling and I was getting the worst adrenal surges I’ve ever had (if that's what they were) or "waves of death" as I called them. My whole body could feel the pressure and speed of the plane, especially during take-off, landing, and when it turned. I wound up laying on the floor of the galley with oxygen and trying to keep calm for the 3 and a half hour flight. I managed to psych myself up for the return flight, which wasn't nearly as bad, but I still needed to lay on the floor of the plane for an hour or so and force myself through it. I was prescribed 15mg of Remeron while at Mayo which I had taken the night prior to my returning flight, so I'm not sure if that's what is wasn't AS bad as the first trip. I’m now on only 75mg of Wellbutrin, and will also take Meclizine, load up with salt, Pedialyte, pretzels, and drink tons of water. Has anyone ever experienced similar feelings to what I described above and if so, is there anything that I can take to make it stop? I rode a high-speed elevator in Manhattan 2 days ago and felt horrible once I got off, the floor felt as if it was falling in and while on the ride up/down I felt like I was going to explode. I don’t know if it’s something vestibular, due to pressure, or the way the g-force affects us, but I can’t imagine what the plane ride will be like. Any advice or related stories would be greatly appreciated. Thank you so much in advance; this is truly the only thing that will help calm my nerves.

Hello, I haven't posted on the forum in a while and I don't know why it only clicked in 24 hours before my flight to post a topic!! I am flying from New York to Florida tomorrow afternoon, less than 2 months after having a HORRIBLE flight. I flew to Mayo the middle of June and it was THE worst day of my life. I had drank plenty of water and salty foods and had taken .75 of Xanex prior to calm any possible nerves, but what I experienced on the plane was simply not related to panic. After we took-off, I thought I actually beat any sort of symptoms when BAMM, out of no where I started feeling as thought I was going to pass out. My face started tingling and I was getting the worst adrenal surges (if that's what they were.) I kept getting these "waves of death" as I call them where my whole body could feel the pressure and speed of the plane. I wound up laying on the floor of the galley with Oxygen and trying to keep calm for the 3 and a half hour flight. I managed to psych myself up for the return flight, which wasn't nearly as bad, but I still needed to lay on the floor of the plane for an hour or so and force myself through it. I was prescribed 15mg of Remeron while at Mayo which I had taken the night prior to my returning flight, so I'm not sure if that's what is wasn't AS bad as the first trip. Saturday is my Grandmother's 90th surprise party and my whole family is flying down to Florida to surprise her. We leave tomorrow at 2pm and come home early Tuesday morning. I'm am absolutely terrified to face the symptoms and sensations that I did on my previous flights, as I thought I was simply not going to make it. Considering the Xanex didn't help, I'm trying Klonopin this time in addition to salty foods and hydration. Does anyone have an suggestions/tips for me and most importantly, has anyone else felt these "waves of death" as I describe? They were most prominent during take-off and when the plane was turning, although I had a few through-out the flight as well. It would make me feel so much better if I knew that I wasn't the only one who has experienced this pressure-filled feeling of dread. Thanks!

Hi, I just googled those terms and they sound very life-threatening! Are they common for people with POTS?

Hi All, 2 questions for you. This has happened in the past and I always attributed it to exercising when it was too bright out, but today- a cloudy day- I decided to go for a 30 min. walk. I've recently started exercising again and have gone walking 4 times this week- feeling alright after each one. Today, I woke up not feeling so well, with a dull heachache and general malaise. I thought by going for a walk I might raise my bp and feel better, but instead I got much worse. About 15 minutes into the walk, I started getting pains behind both ears (this has happened in the past as well.) I picked up the pace to start heading back home and 15 minutes later, I got there. As soon as I walked in the door and stood still I got very dizzy. Everywhere I looked and focused on it looked like was falling in. For example, looking at the floor looked like the floor was falling in, etc. I could see what looked like millions of particles traveling towards a center point in my vision. I laid on the floor as closed my eyes and could still see these particles in my eyes. I felt as if I was falling into the floor, took my HR which was 125, and eventually worked my way up to bed. It has been an hour and I'm still feeling sick, although my eyes have gotten a bit better. I've had intense pressure in my head behind my ears as if someone was standing on it. Has anyone ever felt this way after exercising- with the head pressure and visual disturbances and dizziness? I've been drinking TONS of water the past few days so I know I'm not dehydrated even though my mouth is cinstantly dry. Could this be a bp issue related to POTS or something else? Also, lately I've been feeling my pulse throbbing in my head. It's like I can feel it in my brain. This used to be a bad symptom of mine and seemed to get better, but now is back with a vengance. I can feel it non-stop and sometimes my vison even shakes up and down with each heartbeat. Again- POTS related or something else? I also have lyme disease and a possible autoimmune (slightly positive lupus test), so I'm unsure what to attribute these bizarre symptoms to. Thanks for your time!