mancmm19

Broken Shell (I get the name now after your PM...very clever) I have had MRI's to rule out Chiari. I get a lot of pressure in my head upon standing and it gets so severe that it feels like my head will pop off if I don't hit the floor fast. I also have creaking and crackling noises or sensations in my neck when I turn my head a lot of the time, although no one can hear these noises/feelings from the outside. Also when I turn my head quickly, for example to check my blind spot when changing lanes in the car, I get very woozy and dizzy. This has to be related somehow, I just haven't figured that part out yet I will keep the physical therapist myofascial work in mind, thanks for the tip! -Michele

Mom4cem, Thank you for your reply! Long Islanders unite Have you found anyone who knows anything about POTS close to us? I think my next step will be the city but if you have any recommendations, please share them! I can sympathize with you greatly when it comes to being told it's "anxiety"...except I knew I wasn't anxious!! I have also seen a neurologist at Stony Brook who told me that I am too sensitive to what is going on in my body as well (like when I can feel my heartbeat all through out my body- which I now believe is being caused by low blood volume/blood pressure.) I am trying to take things easy as well, and I have a water bottle with me at all times (it is a must in addition to my pocketbook haha) The movies bother you too!? I have lost all of my social life because of that- movies, concerts, clubs...it is all too loud or the lights are too bright and I feel like I am wired on something for hours after I leave those places- it's simply not worth it anymore. I went to a concert at Jones Beach 2 summers ago and sat front row...BIG MISTAKE! My ears would not stop ringing for 5 days, it was terrible. I have not tried any medications yet. My diagnosing doctor told me that cure is exercise and lots of salts and fluids. I think he might be wrong based upon what I'm reading, but I will give it a shot. I assume medications will be necessary down the line but I am trying to keep positive. My blood pressure is also pretty low and Beta Blockers lower blood pressure so I assume I would need to find the right fit. If you have any advice for me...please let me know! I hope we can both enjoy the Long Island summers at the beach - Michele

Hi all and thank you so much for your input...I could not say it enough. I have had so much joy coming on here to see all of the responses I have gotten and it really makes me feel like people actually care about the way that I feel, not just saying "well you look fine to me" like I have heard from so many doctors. I have learned a lot already (as my diagnosing doctor didn't know too much) but I am still confused on 2 things. This is the main question that I have...I get these episodes after alcohol use (which I no longer drink due to that reason), stress, heat, etc. In addition to my "episodes," I get very lightheaded/pressure in my head and a racing heart beat upon standing a majority of the time. However, my chief complaint are the everyday symptoms that I have...which I have listed at the top of this forum. Even when I'm not going from a laying/sitting position to an upright position, can POTS still be causing these everyday symptoms? I need some clarification Also, I have been diagnosed with POTS via results from a TTT. Does this mean I have Dysautonomia as well? Thank you so much in advance

Excuse my lack of knowledge but the only information I have received on POTS is what I have googled. The cardiac electrophysiologist that diagnosed me said the treatment was exercise and no caffeine, a lot of salt and fluids and I'll be fine. After what I have read and becoming a member of the forum, I have a feeling that it is not that simple. I have Dysautonomia and POTS? I am very confused I thought POTS was a syndrome...it is a symptom?

Candace, if you don't mind me asking...what symptoms can you relate to? What are your other symptoms? M

Hi Miriam, Thank you for your response. I don't know what days are going to be good and what days are going to bed bad. I do know that alcohol (although I no longer drink for this reason), stress, heat, and menstruation trigger episodes not all the time but a majority of the time. Most people that have responded have said that my symptoms seem related to POTS and the information that I have found online supports that as well. Out of curiosity, what makes you think that they might not be? I'm still daveling in the Lyme diagnosis to see if some symptoms are related to that, although I did not see any improvement on the antibiotics for a year and 3 months. The only issue is that I have seen so many specialists (approx. 35) and have had so many tests done that it basically ruled out the possibility of something else. I have had MRI's, loads of blood work, cat-scans, sonograms of my thyroid and abdomen, a colonoscopy, endoscopy, sigmidoscopy, spinal tap, EEG, EMG, ENG, balance tests...you name it. If you don't mind me asking, what do you have that in addition to POTS that brings on your symptoms? I do still drive, just not long distances. I have a problem with my focusing muscle and neurological issues that prevent me from staring at the road for long periods of time. I know that people with POTS have strange visual disturbances and problems with eye muscles as well so I was relating it to that. Sometimes it was worse than others (it was especially bad on bright days or in the snow when everything is white) but I just don't take the chance anymore for long trips. I think also sitting for a long period of time makes me feel sick and it usually gets better upon laying down for a while. I am looking forward to becoming apart of the "family" because I truey don't think, as hard as they may try, that any family member or doctor can relate unless they know what you're going through. Thanks again and I look forward to your response!

Hi! I just wanted to share that I have been sick for 2 and a half years now after I thought I was perfectly healthy. I had my first "episode" in October of 2006 and about a year into being sick, (Sept. 2007) I thought that I finally had my answer when I tested positive 3 times for Lyme Disease. However, after being on anti-biotics for a year and 3 months and seeing little-to-no improvement, I came off of the anti-biotics this past December. I was finally diagnosed with POTS 2 weeks ago and have been having a very hard time determining if there is any correlation between the 2. My Lyme tests still come back positive so i don't know whether I need to go back on the meds or if it's POTS causing all of my symptoms. It's also been difficult trying to figure out if I do have Lyme, whether it caused the POTS. If anyone has any feedback, please let me know. However, my reason for commenting on this forum is that the more I read about POTS, the more I see that it is commonly caused by an illness or disease so I would assume that it can be brought on by an Autoimmune disorder, such as Lyme in my case.

Hi potsgirl, I have just been diagnosed so I don't exactly know how this condition relates to me yet. How did you find out about your other conditions as a result to the POTS? I have baffled doctors for over 2 years and I really need to find someone who can take this diagnosis and my symptoms and put the pieces together...do you happen to know of any on the east coast? My paretns are considering taking me out to Mayo but I'd like to try a doctor a little bit closer first. Thanks for responding and I look forward to your response

Candace29 and Broken_Shell, Thank you SO MUCH for your responses! It is such a weight off-of my shoulders to know that I am not alone. Each day different things click in my head and I wonder if they are related...like how in high school I was always lightheaded upon standing and having palpitations. The doctors found that I was hypoglycemic after a 6 hour glucose test, and was told about my low blood pressure. I ate frequent smaller meals, cut out the caffeine and seemed to be fine until that fateful day in October 2006, or so I thought. Now that I think about it, there were a bunch of instances where I felt "weird" or "out of it" but I just passed it off as normal. I wonder if I have had this syndrome a lot longer than I think? We all sound to be in our 20's, so I know how hard this must be for you as well. We should be out having fun and enjoying our youth and sadly, that is not the case. The last 2 years I was in college were a nightmare. Thankfully I started dating my boyfriend right when I began getting sick and he was a big support to me in addition to my family...but it was rough. I wanted to go home so badly as I was sick all the time, missing classes, and lost all of my social life. I was in a sorority and could no longer go to any of the events or parties because my body couldn't handle it...I didn't understand how my whole life could change so quickly. Instead of things getting better with time, they only got worse. Since graduation last May, I filled a lifelong dream of mine to work in the fashion industry in NYC beginning this past June. Although I struggled each day to make it through the day and then the hour and a half train ride each way, this past December I had to give up my dream to quit and work closer to my home. The train made me sick everyday and I would feel like I was on it for hours after I got off. The long days were wearing me down and everything eventually took it's toll. I began working on Long Island about 30 minutes from my home and things have been better, although the half hour drive does a number on my eyes. By the time I get out of the car my vision is all messed up and it's like everywhere I look is falling in. I do sound better than some people, as I can generally function throughout the day. Granted I never feel like my old self, I can still manage to hold down a 9-5:30 job...although barely. I am wiped out by the time I get home and just want to go to bed. I try to make the most I can out of the weekends although I have a constant fear of going someplace because I could get sick there and be far away from my family and home. Thank goodness my boyfriend is and has been so supportive through all of this, our 2 year anniversary is actually next week I have lost contact with most of my friends, as I cannot go out to the loud bars and cannot drink any longer. My entire life revolves around "what if." What if I go out and don't feel well? What if I stay home alone and get sick...who will help me? What if I get sick while I'm driving? What a MISERABLE life having to think about your health with everything you do!! On the bright side, we HAVE a diagnosis and that is something that I am SO thankful for. I have never been more scared in my entire life than I was for the past 2 and a half years, thinking that I was dying of a condition that could not be diagnosed and that each time I had an episode could be my last one. The good news also seems to be that 80% of women do outgrow this condition by their 30's...so fingers crossed that we will be one of them! We all need to remain positive, because once we lose that, we lose everything. I heard this quote and I try to remember it everyday "Life doesn't need to be perfect, to be wonderful." Although we are not living the lives we used to or the lives that we thought we would, this is the card that we have been given. Through time I think that things will get easier and one thing is for sure...I WILL not waste away the life that I have ahead of me like I did from the moment I got sick until now. Life is TOO short and I have big plans so I will not let POTS ruin them for me and neither should you. I wish that there were support groups to attend because I'd really be interested in meeting people with that same situation that I have. Until then, thank you again for your responses. PLEASE contact me...my email is mancmm19@yahoo.com. I think through relating to each other and learning about what helps, we can kick this. Keep smiling, Michele

I have the twitching problems as well. I have only been diagnosed with POTS 2 weeks ago and was thought to be having seizures for the past 2 and a half years. I have strange spasms in my abdominal muscles frequently that are not visible to the eye. My facial muscles also twitch if I am laughing too much or smiling too long...it's like they can't hold my cheeks in that position or something. When I start to feel sick, my teeth chatter, my breathing gets very shallow and my muscles being twitching and spasming. the muscle jerks and teeth chattering are visible but I also feel these internal "chills" in my abdomen that cause me to shiver. It feels like an electric current is running up my abdomen and shocking all of my muscles. It is not painful but is definitely weird! I too am going to associate this with POTS considering I never had this before I got sick 2 and a half years ago. If anyone knows of a good doctor who knows a lot about POTS in the Long Island/NY/NJ area PLEASEEEE let me know. My neuro at North Shore LIJ doesn't know anything about it and neither does the cardiac electrophysiologist that diagnosed me after my tilt table. These forums are all that I have when it comes down to relating my symptoms.

I completely understand what you are talking about!!! Ugh it's like a breath of fresh air. Everytime I mentioned these weird symptoms to my doctor or family, they looked at me like I was crazy! When I smile too long my facial muscles begin to twitch/spasm...it is very strange. Laughing too hard/for too long of a period of time makes me feel winded and out of it, and again my cheeks will twitch. And also if I am having an intense conversation with someone I will notice that either I start slurring my words, forget what I'm talking about or cannot concentrate on what they're saying because I automatically start focusing on how I'm starting to feel. It's like I'll be trying to tell a story yet in my head my mind is focusing on how I'm beginning to feel "out of it." I can't believe that this is related to POTS, I was have been sick for 2 and a half years and was finally diagnosed with POTS 2 weeks ago. My doctor didn't know too much about it however so these forums are putting all of my weird symptom puzzle pieces together! At least I'm not the only one out there In addition, I know what you all mean about losing yourself I am 22 going on 23 and have been sick since I turned 20. I was undiagnosed with POTS until 2 weeks ago and the past 2 and a half years have been miserable. My junior and senior year of college were completely ruined and I went from being a fun person who was in a sorority with a lot of friends to being miserable with no social life and longing for my old self. I still cannot do the "fun" things in life as loud noises and flashing lights make me feel "wired" and I cannot come down from that feeling for hours. Concerts are all of a sudden too loud and my ears will ring for days and days and in general I don't feel well enough to get all dressed up and go meet friends for a few hours. I cannot drink without get violently ill the next day so that rules out much of a social life as well. I am so blessed to have a great family and boyfriend by my side throughout this whole ordeal and hope that now that I have been diagnosed I will finally begin to truely start living my life again. I took it for granted and I never will again, that is for sure. Most days I don't feel well enough to do anything and am struggling to hold onto a full-time job. Even when I do feel "ehh," everything I do I need to decide whether it is worth it for me to make an attempt to go out and risk feeling ill or just stay home. I cannot wait until I do not need to question leaving my home ever again and that day will come for all of us... I KNOW it. Keeping positive and hopeful is the only thing that we can do because once we lose that, we have pretty much lost everything. For me, 2 and a half years have been wasted with anxiety and wonder, thinking that I am dying from a mysterious illness that no one can diagnose. With finally being diagnosed with POTS, I am determined to not let it interfere with my life as much and will do anything to get better. I have a feeling that the road to recovery is going to be a long one but as long as I enjoy life along the way, that is just fine with me.

Hello everyone, I am a 22 year old female from Long Island, New York, although I feel like I have the health of an 80 year old woman. I am new to Dinet, as I was diagnosed with POTS after a tilt table test last Tuesday. Although I have only been diagnosed for a week, I have been sick with no definitive diagnosis (other than Lyme) for 2 and a half years. Considering I have been sick for quite some time and have seen over 35 specialists, I am a bit weary of this POTS diagnosis and if it truly explains all of my seemingly-unrelated symptoms. If anyone has any opinions about my story…PLEASE contact me. I have been desperate for an answer for over 2 years now and would like to know if POTS is really it! I know that my story is long, and the sad part is that I tried to sum it up best as possible, but please take some time to read it. I went to school upstate in Oneonta, NY. A seemingly healthy girl, in November of 2006, I experienced my first of many strange episodes. I was driving home from school when all of a sudden I felt this miserable sensation throughout my body, almost like a hot flash. It felt as if a venom was traveling through my veins from head to toe. I felt as if I was on the verge of passing out and my heart was racing. I was very nauseas, dizzy, and became extremely weak. I began seeing black spots and started passing out, so I pulled my car over and called 911. I was taken to the hospital, being released later that day with "anxiety". I knew that anxiety hadn’t brought on my strange episode but considering I was a healthy person, I dismissed it as a freak thing and went on with everyday life. However, a few weeks later, the same thing happened and this is where my 2 and a half year journey began. The episodes continued, and in addition, I began to notice that in general each day, I was feeling more and more unlike myself. I couldn’t put my finger on it, but I just didn’t feel WELL. The episodes continued and began to resemble seizures/anxiety attacks, but I knew that it was not anxiety. 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 nausea, tremors in my stomach, sometimes have diarrhea, and muscle twitches. Sometimes it stops at this, although after alcohol, 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 2 hours. Eventually, the heart rate will decrease but I am left feeling drained, exhausted, and tired. I have had a video-EEG to rule out seizures, due to the resembling characteristics, but it came back negative. Each and every time I went to the ER for these episodes, they told me I had anxiety, although the medicine they gave me to calm me down did not reduce the symptoms. Over the course of time, I have begun to notice pattern with these strange episodes. They would happen after I was in the heat, after being stressed (the day after I got into a car accident), around the time of my period and ALWAYS the morning after drinking liquor. The pattern of having one of these episodes in the morning after a night of drinking was becoming more and more frequent, so I stopped drinking alcohol all together. After doing this, the episodes decreased dramatically, except when I went out one night and had some drinks with my friends (after 10 months of not having a sip) and sure enough, the next morning, I was back in the ER. From November 2006 until now, getting worse over time, I feel HORRIBLE everyday. I have had such strange sensations and symptoms that have lead me to over 25 doctors of every type imaginable, and numerous visits to the ER. Although eliminating alcohol has decreased the episodes, the misery that I feel everyday has only gotten worse with time. I was diagnosed with Lyme in September of 2007 and thought I finally had my answer. Most of the symptoms matched, although I had no joint pains like most people do, but rather neurological/gastrointestinal symptoms. My test was negative at first, but then came back positive 3 times since. However, after being on antibiotics for a year and 3 months (including IV for 26 days) I stopped this past December 2008 after seeing no improvement. In October of 2008, I began noticing that I was get very lightheaded and having extreme pressure in my head/ racing heartbeat upon standing up or bending over. This symptom was new for me, although I have always had low BP and have been diagnosed with Hypoglycemia since high school when I would be on the verge of passing out. I was told I was orthostatic by a neurologist, and he dismissed me at that. After an episode 2 weeks ago when I was taken to the ER after passing out at work, I had a tilt-table test done last Tuesday. The test was performed by a Cardic Electophysiologist, and after 20 minutes he told the nurse to take me down. My BP had dropped upon being upright, and my heart rate went from 71 to 140. He diagnosed me with POTS but I am looking for any reassurance as to whether anyone else has had some of my symptoms...as they are mostly neurological. I would love to finally know that POTS has caused my living-**** for over 2 years, which has caused me to lose my job in the city and ruin my last 2 years at college. Here goes the list (I might be here for a while Everyday Symptoms: (symptoms of “episodes” are listed above) • Malaise – never feel good, vague feeling of something “not feeling right” • Extreme pressure in base of head/neck (usually happens upon standing or bending over, sometimes in conjunction with becoming lightheaded but not always) • Lightheaded constantly- blood pressure always low. Drinking a significant amount of fluids or taking in salt has no effect • Dizziness • Feeling as if I can't take a satisfying, deep breath • Feeling “out-of-it”. Like I am living in a dream. Everything looks fuzzy and I feel like I am just very “not with it.” • Heart pounds strongly after standing or minimal exercise, causing the need to stop and take deep breaths. (Echo showed “sluggish heart” but Stress test was negative) • On the verge of syncope on multiple occasions • Fatigue • Difficulty swallowing- feels as if muscles in throat just freeze • Slurred speech, problems getting out what I want to say • Feeling as if someone is shaking my head back and forth, brain feels “wobbly”- usually happens after turning my head quickly but not always • Creaking/cracking in base of head/neck (usually upon movement but sometimes while head and neck are still) • Need to take a deep breath • Feeling of “fogginess” in brain, just feel very “out of it” • Increasingly significant tinnitus/pulsing sensation in ears (with my heartbeat) • Ears constantly “go out”- Everything will sound distant • Left ear feels “full/stuffy”, constant need to “pop” or “crack” • Shooting pressure, occasionally in conjunction with pain, up the left side of neck • Stabbing pains in head, occurs for a few seconds then dissipates. Sometimes this will happen a few times sporadically, other times over the duration of hours or days • Visual problems o Trailing vision o Shaky vision o Flashing vision o Extreme after images o Bright lights o Black/neon spots o Palinopsia (visual snow) o Occasional episodes of double vision o Blurry vision o what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes • Muscle twitches/spasms • Tremors(mostly in stomach, not visible to the eye) • Occasional teeth chattering when I start feeling sick, then come the tremors, nausea, and the chills • Nausea, lack of appetite, loss of 25 pounds over the course of 4 months • Occasional neuropathy - shoots down arms • Irregular menstrual cycle (ranges from 18-41 days) • Feel very “hypersensitive” to light, sounds, movements (unable to be where it is loud and have bright lights- this has squashed my whole social life) • GI Issues- told I have IBS although pills are not working • Feel full all the time, no appetite, cannot eat large meals anymore • Head rocking (my head shakes up and down in what seems to by rhythm with my pulse) • Throbbing/pulsing sensation in my head/neck/face (it feels like I can feel my pulse in my brain) • Sensation when I'm laying down as if I am rocking on a boat • Body rocking (my body actually rocks back and forth involuntarily on occasion) • Problems sleeping • Exercise Intolerance, I used to exercise all the time, now sometimes I need to take deep breaths after walking up the stairs. My visual problems also get worse upon exercise; it looks like the floor is falling in everywhere I look. • Cannot tolerate the heat/cold. (I get extreme pain in my ears and head after being out in the cold for a brief period of time.) • Many more that I forget *Symptoms definitely become severely exaggerated after alcohol use (I stopped drinking almost 2 years ago due to feeling so ill afterwards) and have also been related to heat, stress, sugar, and menstruation I need help...I feel like I have no where to turn and my parents feel so helpless. I have had spinal taps, a colonoscopy, Sigmoidoscopy, endoscopy, MRI’s, CT-Scans, EEGs, EMG’s, and countless amounts of bloodwork.. I wore a heart monitor for 3 months and although it showed PVC’s, PAC’s and tachycardia, no diagnosis was made. I have seen on 30 doctors and have gone to the ER approx. 15 times since November 2006. I have seen an infectious disease doctor, a neurologist, cardiologist, endocrinologist, GI, Opthamologist, Neuro-opthamologist, movement disorder specialist, and the list goes on. Doctor after doctor has told me that they can't classify my condition or that this is some kind of strange anxiety. I truely feel that I know my body and it's not. If ANYONE can please comment on my story, relay some helpful advice or let me know if you've had any of my symptoms PLEASE DO, I will appreciate it more than you know. The past 2 and a half years have turned my life into a living nightmare and I am losing hope of feeling like my normal, happy self with each day that passes. The only thing that brings me comfort is reading symptoms and stories of other people and feeling as if I'm not alone. I think that it's so wonderful that people can join together to help each other and offer advice and consolation and hope that this will turn out positive for me. Please help me determine whether POTS is really the cause of my myriad of symptoms! Thank you for your time and please feel free to contact me!