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!

Oops. Unfortunately there isn't much in the way of treatment. But of late promising research is coming out. I think if you type in iom report on systemic exercise intolerance disease. You willl get some idea.

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!!

I have the same problem with conversations, even on the phone. It's so frustrating how rotten a phone call can make me feel, and I've had to tell a lot of well-meaning friends that a visit will wipe me out! I've been told I have CFS for years, but like many people am dissatisfied with that given how it makes me feel that I'm being "written off."

I've never taken benzos for any length of time (just the occasional "crumb" of one if I'm feeling desperately anxious, and that probably twice a year), so I know it's not that. I've been told I have neurally mediated hypotension, and thought maybe that explained the problem I have with any sort of stimulation - a conversation, a laugh, a startle or fright, etc. I don't entirely understand it, but I think NMH includes a problem with adrenaline, which sets off a plummeting heartrate and BP. I know that's what happened with my TTT - I was reasonably okay with the tilting, but the minute they administered the norepinephrine (sp?) my BP and HR nosedived.

I know that's not very clear and doesn't offer a solution, but it's a possible alternative explanation - ? At least you know you are not alone!

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?

Hello Michele,

I am so sorry to hear you are undergoing this terrible thing!! I personally can add the following from my personal experience:

I had EXACTELY what you describe for about 5-6 months in spring of 2014, when my POTS was at its worst ever. I simply couldnt lead and follow a conversation. No listening and no talking without getting symptomatic within minutes. Neither person to person nor on the phone. The symptoms I got were strikingly the same as yours: At first lightheadedness and a strange feeling of being "overloaded" in my head, very soon followed by heavy internal termors, extreme "nervousity", severe chills and teeth chattering! I too had to avoid eye contact. I had to excuse myself from conversations so many times. At some occasions I wasn´t even able to talk to docs in hospital für 3-4 minutes without getting theses symptoms. Talking/listening made me feel "overstimulated" in general. As a consequence, I couldn´t watch TV or listen to the radio - just the same symptoms within minutes....

Luckily, these symptoms went away when my POTS cleared up slowly since fall 2014. But I still feel that conversations longer than 2-3 hours could make me symptomatic in that particular way (though much less intense). And it still gets better and better now.

Last but not least, there´s something you mentioned and that caught my attention immediately: You say taking a small dosage of xanax sometimes helps at least little bit. I too was taking (and finally tapering) a benzo. I first took xanax then changed to diazepam and finally tapered that slowly. Exactely parallel to this, my POTS flared and especially the terrible conversation-thing started... So, my idea: Did you change your dosage of xanax recently? Or could it be that you are actually in "tolerance withdrawal" (=taking the same dosage as usual but actually your body would start to need more...?). Xanax in particular is a benzo with a very short half time, thus you may be getting into "interdose withdrawal" regularly.

I actually emphasise this benzo thing, because your symptoms don´t seem particularly typical for POTS, but rather sound strikingly like what people experience who withdraw from benzos - you can read literally hundreds of experiences exactely like yours on benzo-forums (like benzobuddies.org f.e.). One of the worst symptoms the members report is the inability to lead a conversation, followed by the symptoms you describe. In addition, tapering benzos can flare up (or even trigger for the first time!) POTS/dysautonomia. So you may look into this issue as well...?

Anyway, this symptom will go away, don´t worry!! I send you much strength and energy!!

Best wishes!!

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

Talking requires deeper and more frequent breathing. I became the question asker and listener over the years.....its a real help in social situations! If or when people actually and really want to know about me....I make the time and breathe slowly. These encounters are only with people who understand my physical condition.

I am sorry this is happening to you ...but, you can adapt, improvise and improve....though it may take much time.

I learned from a retired minister to "always be tellen the truth, but not always be tellen it". That means, its ok to pass off your symptoms to those you don't see frequently, but you might want to inform those who really love you.

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!

Cerebral vasoconstriction? Caused either by excessive norepinephrine resulting in cerebral vasospasm. Also the other culprit could be hypocapnia.

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!

Hi All,

This is a symptom I've had on and off for the past 3 years now, but it seems to have gotten worse within the past 2 weeks. Lately I can feel my pulse very strongly in my body, as if it is moving like a wave inside of me. I've been feeling it a lot in my neck and head and my head seems to rock with the beat as if my pulse is pushing my head to move (I feel it right now just sitting here.) Or this past weekend for example, when I was laying outside on a reclining chair I felt it non stop. I put my hand over my eyes to shield myself from the sun and my arm was rocking back and forth with it!! Does anyone else ever feel this and if so, what the heck is it?! Like I said, as I sit here at work I feel it pretty strongly and I'm also getting a "cold" sensation on both sides of my neck and under my chin, not sure if they're related. PLEASE respond if you've ever felt this way! I hate being scared of my own body all the time

Can you describe your symptoms from consuming a small amount of alcohol?

This is how I began noticing how I was ill...ALCOHOL. Although I'd been drinking my first 2 years of college, something began changing, along with my health, my 3rd year. I began to notice that in addition to not feeling like myself everyday, after I drank alcohol I would feeling like I was DYING the next day. This was undoubtedly the cause to most of my ER visits, and I could simply not fuction. I would feel as if my body was shutting down and simply...dying. I stopped drinking and these episodes drastically decreased. However, after not drinking for over a year, last May I decided to have a few cocktails the 2 nights before my graduation to celebrate. BIG MISTAKE. I woke up at 7am and KNEW what I was in store for. I was feeling "ok" but could tell I was in for it, and sure enough, around noon, it began. I was rushed to the hospital and after receiving IV fluids the attack subsided over the duration of 3 hours. It was by far the worst feeling I have ever felt and I thought for sure I was not going to see the next day. Needless to say, I haven't touch ed a drop of alcohol since then and I don't think I'll ever understand what changed so quickly...I used to be able to tolerate my alcohol very well!! Below is an excerpt from my very first DINET post, clarifying my symptoms after alcohol:

"Episode" Symptoms: (after alcohol use, being in the heat, menstruation, possibly sugar or too many carbs?)

There is no way that I can describe these episodes, it feels as if I am dying. It starts with hot flashes that move like a wave over my body (feels like a poison is flowing through my veins). My teeth start chattering, I get nauseas, tremors in my stomach, sometimes have g.i. issues and NEED to go to the bathroom, and muscle twitches. Sometimes it stops at this, although after alcohol use (which I no longer drink) it only gets worse. I feel like I can?t catch my breath, my heart POUNDS in my chest, I feel weak and on the verge of passing out. My extremities go numb, I get extremely nauseas, I feel like I am very out of it like in a dream-world, my ears will begin ringing, and I get severe jerking of my limbs/muscles twitches/spasms. These episodes last anywhere from 30 minutes to hours. Eventually, the heart rate will decrease but I am left feeling drained, exhausted, tired, and very "out of it." Only way to describe these episodes are that I feel like my body is shutting down and I am dying. I can't imagine feeling anyworse than when I am in the middle of an episode. I do anything I can to avoid these, and although I get them randomly from time to time, they have drastically decreased since I stopped drinking alcohol a year and a half ago.

i have the same burping problem!!! when i stand i start burping, when i eat i start burping!

do you have alot of nausea? is pots very disabling for you?

i have mild nausea SOMETIMES. Lately symptoms have been like this, and it really does screw up any normal life funciton it seems.

-Excessive burping, worsens on standing or starts from standing, feel like tons of air trapped or gas even, lots of painful pressure. Usually when this happens i have or feel like im having palpitations.

-Headache, usually on one side or another

-Flushing in limbs occasionally, and limb pain, aches and cramps

-racing heart sometimes upon standing(that i can physically notice)

-tingling, twitching, pulsing in limbs or head or random spots on body

-Standard Chest pain of course

-Shortness of breath sometimes, not as much lately.

Can you relate to any of this?

I have the SAME symptoms!!! You should read my symptom list that was my first post. The pulsing/heartbeat internally is the most annoying. I feel it in my stomach or in my head the most often...and I can visually see it! If I Put the remote or something on my stomach, you can see it rocking back and forth, and sometimes if I close one eye and stare at something with the open one, I can see my head rocking up and down with my pulse! Have you found anything that makes this worse/better?

Well everyone, I did it. It was a good and bad experience to say the least. I was fine during 95% of the car ride on Friday and just started feeling a little ill within the last 20 minutes. We got to the hotel, I layed down, got some dinner, rested again, and then went out for a bit. Instead of being the usual dance floor party-goer I opted for a relaxing option and sat down away from the loud music with 2 bottles of water. I danced for about 5 minutes the entire night, with ear plugs in to help with the noise. I did A LOT of talking which probably played against me in the long run, and went back to the hotel around 12:30 to get some sleep. WRONG THINKING. I got ill in bed, and everytime I tried to close my eyes I felt very out of it as if I was catching myself falling asleep, without actually falling asleep. I used to get this same feeling when I'd lay out in the sun. Needless to say, I was up until 4:30 a.m. with the chills and feeling horrible. I also had pains in my stomach, not so much of a stomach ache. I let me boyfriend sleep and suffered in silence until I finally feel asleep around 4:30.

I woke up Saturday morning at 7:30 am, because my body is on a clock from my work schedule although I was EXHAUSTED on 3 hours of sleep. We went to breakfast with friends, and I wasn't feeling great but not horrible. I started feeling worse around 12pm, and went back to the hotel to lay down. Ugh, it only got worse. I tried to pick myself up out of bed after 3 hours to go down to the park to BBQ with everyone, where my boyfriend was also playing sports. (I didn't want him to miss out on time with his friends because I was sick so I had been laying in the hotel by myself.) Yet again, WRONG THINKING. Within 20 minutes of beng at the park, I felt like DEATH. I had my boyfriend drive me back to the hotel and I layed there for hours. I couldn't fall asleep although I knew how exhausted I was, so I just layed there until it was time for dinner. Around 8pm, I was feeling better and decided to get up and see my friends. We went to the bar with everyone and I sat down the entire time drinking water. It took my mind off of how I felt for a bit and then I went to thr hotel to rest. Around 12am, I went to go visit my boyfriend at his fraternity's party before calling it a night. Needless to say, we got held up there for a while and I didn't wind up getting back to the hotel until almost 2 am. I got sick yet again and didn't fall sleep until after 4. I woke up at 9am Sunday morning, on less than 8 hours of sleep in 2 days, and we left on our 4 hour drive home at 10:15.

We had to stop 4 times because I was having stomach issues, and I yet again felt like death. I did my usual try to hold it in, then feel so sick I cry routine, which continued until we got back home. I slept for 3 hours happily in my own bed although on top of everything, I got laryngitis and some bug while I was up there!! (I forgot to mention that I began coming down with something on Saturday and had NO voice Saturday or Sunday.)

Needless to say, I DID IT. I went upstate the week before my period (ladies, we all know what a bad time that is alone), in the midst of coming down with something and POTS syndrome. Although I was sick a majority of the time and cried a lot, I am glad that I had the courage to finally leave the house and do something. I conquered my fear and that was well worth it. Today, I am back at work. I took yesterday off because I had a fever and sore throat and went to the doctor, which explains some of my misery while upstate. Of course, the one weekend I decide to do something, I catch a bug that has been going around.

Conclusion: I would do it again despite how miserable I was at times. Although POTS effected the things that I did a majority of the time I was up there, it didn't stop me. And surprisingly, for the few hours throughout the weekend that I was "well" I actually had a good time

Thanks everyone!!! I had a mini panic-attack last night getting all of the anxiety out of my system from the pressure to act normal up there even if I don't feel so normal...but I'm over that now. I am very excited and feel like I'm talking a really big step for myself. If I give into being so scared that I don't go, I'll never go anywhere. I am going to show myself i can do it, and that sick up there is no different than sick down here! Woo hooooo!!!!

Keli- Have a good trip as well!!! My car ride is 3.5-4 hours, and considering yours is 5, I'd suggest a lot of stretching and rest stops! I'm relying on that to get me through...hope we both have a great story to share come Monday!

Thanks again everyone...i am going to do it! (I feel like I'm walking on the moon- "One small step for Michele, one giant step for POTS!!"

Hi everyone,

So this weekend is the Alumni weekend for all sororities and fraternities at my college. All of my sorority sisters who have graduated are going, and I missed the one in Fall due to being so sick. My boyfriend was in a fraternity as well, so after much deliberation, I THINK I might give it a shot. The only reason I may go is because me boyfriend will be there with me (he knows everything I go through) and this is the last Alumni weekend he will attend.

I have been back and forth on this for months with a definite NO on monday, but have since felt this strong sense of freedom and don't want POTS to keep ruining the good times in my life. This past weekend was my best friends birthday in Atlantic City and I didn't go because I was so scared about feeling ill (which was a good thing I didn't go because I was in bed all weekend.) I saw all of the pictures yesterday and was so upset being constantly reminded of how I am always the one missing out. Low and behold, I want to go to alumni weekend and enjoy myself.

I have decided that I will leave work early on Friday to miss any rush hour traffic which would lengthen the already 4 hour drive. My boyfriend will drive so my eyes are okay and we will stop however many times I need, although the more we go upstate the less frequent the areas to stop. I'm bringing my Xanex along as well and PLENTY of water. Once we get up there, I am going to lay down in the hotel until it is time to go out around 9:30. I have decided to go to the party for a little, as it is my sorority and my boyfriend's fraternity who are hosting the party...I LOVE being the only one sober! :/

On Saturday I am going to take it easy, rest frequently and drink tons of fluids and salt. I will go out for a bit Saturday night as well, and try to get to bed around midnight. On Sunday, we are going to leave around 9-9:30 so I can be home around 2 and have the rest of the day to rest before work on Monday.

This is a big step for me, I have not traveled in the car this long since I graduated school in May. I am SO nervous and so is my boyfriend but I have to know I will be okay. Worst-case scenario, there is a hospital in town that I have visited ALL too many times, and I'm sure they even miss me since I graduated!!! (My friends used to joke that I should've earned frequent flyer miles there.)

FINALLY, my question to you is this...what can I do to keep myself feeling as good as possible? Does anyone have any tips for traveling? I will bring my Xanex, rest as much as possible, have lots of fluids salt, wear ear plugs at the party so it isn't as noisy, and try to relax. This is a BIG step for me but I feel like I need to make it. By me being so scared to go somewhere away from home and get sick, I have made the circle of things i can do smaller and smaller and I'm scared of how much smaller it can get. I mean I LIVED there for 4 years, 2 of them sick and my last year without my family, boyfriend (he graduated a year ahead of me), or even a diagnosis. How bad can it be...right?

In need of a little shove...

Michele

I'm sorry for your Loss Julie...that's rough one

We're all here for you!

HUGSSSSS,

Michele

Ughh...I hate to add another "me too" to a symptoms forum but...ME TOO!! I have experienced severe neck "crackling" and popping as I call it, although I NEVER crack my neck. Some days are worse than others, and it happens a lot when I turn my head. This was one of the major symptoms that aided the "Lyme" diagnosis...but besides my positive Lyme test, the more I read about the common symptoms between POTS and Lyme, I wonder if it has been the POTS all along? If anyone knows of a trick to make the cracking lessen, pleaseee post. It is very annoying although, it is not the worst out of all of the symptoms we have...

Add me to the list! For whatever reason intense conversation and laughter make me feel funny I find that if I talk for a period of time, like when explaining a story, I feel my BP rise and my face feels flushed. I will feel pressure in my head and need to take a few deep breaths. Laughter does the same thing...especially if something is really funny! Sometimes my facial muscles will spasm as if I don't control them (smiling for pictures triggers this sometimes as well) My body feels very strange and out of it after I laugh or talk for too long of a period of time. I'm "glad" to hear that others have this symptom!

Last week I needed to give a presentation to 30 co-workers...needless to say my nerves were a little jarred! I had asked to do the presentation sitting down to avoid becoming too "potsy," but about 3 minutes into explaining my work with consecutive talking, I began to feel odd. My ears went out and it was as if I could only hear myself in the distance. My face felt flushed and I felt my BP rise and I probably had a shocked look on my face, but I tried not to react to my symtpoms and keep talking. I'm sure my co-workers noticed but I paused after I was finished with my sentence and I literally felt myself returning back to "normal" gradually. I wonder what attributes these odd scenarios to POTS? It really knows how to mess with every part of daily functioning doesn't it?!

Hi everyone,

I hope that you had a great weekend!! I just want to know if anyone has a positive story since their diagnosis. This past weekend, although I've been sick for almost 3 years now, I was looking back on all of the things that I could've done a year ago that I can no longer do. I didn't even realize that I was deteriorating until I thought about it. I had to leave church early on Easter Sunday because the sitting/standing routine was just too much at 11 am!! (Unfortunately church is NOT conducive to POTS! And too make it better- I needed to sit down while everyone else was standing and an eldery man next to me proclaimed loudly "You better stand up young lady or else you won't get any holy water!! JUST WHAT I NEEDED as if everyone around me didn't notice I was the only one sitting down!)

Anyway, I'm starting to get very scared when I think about the future. I am 22 and have big plans for my life...and I am absolutely petrified that I will love this way, if not worse, forever. We only have one life to live and I don't want to spend mine like this for one more day!!! I am thinking about quitting my job and turning my priority to exercisif everyday, hoping that will make a difference. I want to stop this downhill pattern before it continues any further.

My question to you all is, have any of you gotten better, even a little bit? If so, what helped you? Also, has any ever heard of a full if not mostly full recovery from POTS? This negative attitude I'm having is really ruining a lot of the day and I NEED some hope. Please share if you have some!

Thanks as always,

Michele