Strange Symtpoms...pots? Please Help :(

[mancmm19]

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!

[potsgirl]

Hello, and Welcome to the Forum,

I am also new to the forum, but wanted to write to you because I have a lot of the same problems you do, especially concerning neurological issues. I have cardiomyopathy, kidney problems, and other problems with my organs since they are not receiving enough blood to function appropriately (lack of blood flow to the brain can cause a lot of 'fog', memory issues, etc.) I never have problems with high BP, am constantly low, with a BP around 80/50 and a heart rate of 60 lying down, which goes to around 65-70/45 and a heart rate of between 115-140 when I stand or stand too long in one place.

I got tired of all of the multiple doctors who were baffled, and have started on a course with a neurologist who specializes in autonomic nervous system diseases at the Mayo Clinic in Rochester, MN. I think that they're some of the top specialists in the field, and I would recommend you go to an expert who can work with other doctors in within one facility to possibly get the most accurate diagnosis possible.

Hang in there, and you can always write me...We need all of the support we can get!

potsgirl

[potsgirl]

Hello, and Welcome to the Forum,

I am also new to the forum, but wanted to write to you because I have a lot of the same problems you do, especially concerning neurological issues. I have cardiomyopathy, kidney problems, and other problems with my organs since they are not receiving enough blood to function appropriately (lack of blood flow to the brain can cause a lot of 'fog', memory issues, etc.) I never have problems with high BP, am constantly low, with a BP around 80/50 and a heart rate of 60 lying down, which goes to around 65-70/45 and a heart rate of between 115-140 when I stand or stand too long in one place.

I got tired of all of the multiple doctors who were baffled, and have started on a course with a neurologist who specializes in autonomic nervous system diseases at the Mayo Clinic in Rochester, MN. I think that they're some of the top specialists in the field, and I would recommend you go to an expert who can work with other doctors in within one facility to possibly get the most accurate diagnosis possible.

Hang in there, and you can always write me...We need all of the support we can get!

potsgirl

[Broken_Shell]

Hello Michele,

Welcome to the forum. I am also a new member who has had dysautonomia for about 7 years now, and I just read your post. I was literally sitting on my couch saying "oh my gosh... yes!" I am 26 years old, and I have a story similar to yours. I never drank alcohol so I can't relate to that being a trigger (although alcohol use can lead to hypoglycemia), but when I was in college I began having "episodes" following a "viral illness". I initially had a hard time describing my symptoms to doctors because I just didn't feel "right" and told them that I thought I must be having seizures. I too have seen doctor upon doctor for years and been called a puzzle. Finding this forum has been wonderful for me because I see other people who struggle as much as I do everyday just to survive because we are constantly fighting our own bodies. I wish I could tell you that there is a magic way to get your life back, but after 7 years of searching I have yet to find one. My symptoms began when I was 21 years old and have progressed since then to the point that I had to leave graduate school two years ago, just one year short of completing my doctorate degree in pharmacy. Everyday I look at my life and can't believe what has happened... I went from being a very healthy, active person who was in dance and played tennis and had a lot of ambition and goals to someone who is 26 years old and can't even drive or go anywhere by myself because of my symptoms and episodes. I have an autonomic dysfunction with symptoms composed mainly of wooziness/dizziness, pressure and pain in my head/neck/face, daily episodes of hypoglycemia, GI problems - constipation/diarrhea/nausea, heat and cold intolerence, lack of sweating, and the list goes on and on. My symptoms vary from day to day and minute to minute. I have included a link at the end of this note that you might be interested in reading. I also have multiple "strange" neurological symptoms, many similar to those you have described, most notably I can relate to the sensations in the base of your head (shaking, pressure), the internal/abdominal shivering/tremoring feeling, the feeling of being on a moving ship or a floor that is swaying (I told this to doctors for years - I feel like I am on a rocking ship or standing on a "balance ball" that keeps shifting), feeling "out of it" and "fuzzy" in your head, etc... I completely understand when you say that you just don't feel like yourself - I haven't for years since this all started. I could type a really long response to you, but I have a difficult time using the computer and sitting up for a long time... I can tell you though that you are not alone and that your diagnosis of dysautonomia sounds accurate to me. Just like you, I have a long document about my story and list of symptoms typed up that I use to send to doctors to determine whether or not they feel that they may be able to offer anything to help me. Five years after diagnosis and two years after leaving graduate school, I am still deep in the hunt for a doctor or treatment that will help me to regain some of my ability to function. I have found some things that have been helpful for some of my symptoms, but I still completely disabled by them. I know that you and your family are scared. Just try to take it one day at a time and realize that even though having a diagnosis of dysautonomia gives you an answer, it is probably not quite the answer you were hoping for because there is no magic treatment to fix your symptoms, but there are ways that you can help yourself. I am new to the forum, but I have read several discussions and been amazed at how similar the lives of other forum members are to my own life. I would encourage you to ask questions and read posts (use the search tool) because it seems to me that the people on this forum are really interested in helping one another and offering advice about things that have helped make their lives better. I can tell you from personal experience (as I'm sure everyone else on the forum can) that having dysautonomia means that you will likely have to change a lot about your life, but hopefully it will make you a stronger person and help you to truly appreciate the little things that are so easily taken for granted. That is all I can write for now, but please feel free to respond to my message or post any questions. I am not yet familiar with the forum, but I think that there are both discussion boards and mailboxes where we can write things. Like the response from potsgirl says, "we need all the support we can get!"

Here is the link: http://www.associatedcontent.com/article/1...omia.html?cat=5

Best Wishes, Broken_Shell

[cvincent]

Hi, welcome to the forum. I have at least 35 of the 47 symptoms you listed, as well as some others. It definately sounds like you have POTS. I would really suggest seeing a doctor who specializes in autonomic disorders. I was diagnosed at the Mayo clinic in Rochester Minnesota in 2006 and they seem to understand this stuff pretty well. Also know that everyone on this forum is extremely helpful and supportive. If you have any questions or concerns don't hesitate to post. Also, we are pretty close in age so if you ever need to vent or anything you can send me a message. Hope some of this helps.

Candace

[Broken_Shell]

Hi Michele,

One more thing... has a chiari malformation been ruled out? You mentioned you had mri's, but if it hasn't then you might want to check with the doctor because having this physical abnormality can cause autonomic dysfunction that can be helped with surgery. I thought of it because you talked a lot about pressure at the base of your skull and neck. I also have these symptoms (I told doctors for years that there was something wrong with the junction between my neck and head) and have ruled out them being caused by any type of neurological malformation. I get craniosacral and Upledger method myofascial work done weekly by a physical therapist, and this helps to reduce these symptoms. My physical therapist also taught me to use kinesiotape on several of the muscles around my neck and face which has been helpful. I also have the difficulty you mentioned where you have increased symptoms with head movements - I get very disoriented feeling and tight all over my head and neck from moving my head around. Hope that helps!

~ Broken_Shell

[mancmm19]

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

[mancmm19]

Hello, and Welcome to the Forum,

I am also new to the forum, but wanted to write to you because I have a lot of the same problems you do, especially concerning neurological issues. I have cardiomyopathy, kidney problems, and other problems with my organs since they are not receiving enough blood to function appropriately (lack of blood flow to the brain can cause a lot of 'fog', memory issues, etc.) I never have problems with high BP, am constantly low, with a BP around 80/50 and a heart rate of 60 lying down, which goes to around 65-70/45 and a heart rate of between 115-140 when I stand or stand too long in one place.

I got tired of all of the multiple doctors who were baffled, and have started on a course with a neurologist who specializes in autonomic nervous system diseases at the Mayo Clinic in Rochester, MN. I think that they're some of the top specialists in the field, and I would recommend you go to an expert who can work with other doctors in within one facility to possibly get the most accurate diagnosis possible.

Hang in there, and you can always write me...We need all of the support we can get!

potsgirl

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

[all4family]

Hi Michele,

I just wanted to say welcome, and sorry for what you have been through. I know how it feels going to the ER and doctors for years, and only to be told it's anxiety. When you know it is not. I was the first one to ask about anxiety to my doctors, because I was more terrified it wasn't, and wanted an easy answer and to walk away. I was also given medication for anxiety, but it only made matters worse for me.

I also understand your hesitation to believe that POTS could be a "simple answer". It is very hard to believe you feel that sick, and aren't dying. And worse that it may be permantant. But there is nothing simple about POTS. All the doctors I have talked to since diagnoses didn't even know what it is. And even the ones who do don't usually know what to do with it.

So many strange symptoms seems to be the "norm" for pots, and considering all the body is affected by the nervous system it makes sense.

I know you will find lots of answers, and support on this site. I wish you healing, and understanding.

Suzy

[delphicdragon]

Welcome to the Forum-

I too get the chattery teeth, nausea, diarrhea combo when I have a bad flare. It usually starts with stomach pain for me. If I can lay down IMMEDIATELY sometimes I can short circuit the full autonomic response.

A lot of your symptoms sound like POTS. I'm 24 and have been getting these types of symptoms for years. The stabby head pain is called an ice pick headache and it's common in people with migraines.

I hope that you feel better soon and gain some function back. I had been very sick for a while and am now working a 9 to 5 job and am mostly able to do what I need to do to function (knock on wood that I can keep it up). This disease waxes and wanes - enjoy the good times and know that they always follow the bad.

Sara

[dsdmom]

Welcome -

and sorry you are dealing with all of this. But, yes, your symtpoms do sound autonomic-related. The autonomic nervous system can really do a number on you if it's not working right! I would strongly suggest you see an autonomic specialist - possibly a neurologist. But, not just any neurologist - they really have to specialists in this field. Check out dinet.org for a reference list....

[potsgirl]

Hi Michele,

The only other place I know of that has this subspecialty is at Vanderbilt University. I really would encourage you to try there or make the trip to Rochester, MN. I see the heads of neurology and cardiology here in Tucson, and they haven't been able to go any further with me in the last 1 1/2 years, either. If you want to pull all of your symptoms together and get some real answers - that's the way to go!

I wish you peace,

potsgirl

[babettess]

Hi Michele,

Reading your post was like reading my diary!! It is so amazing what weird symptoms POTS can give you.

I am headed to Cleveland Clinic in Cleveland, Ohio on Monday. I'm not sure how close you are to them. I will let you know how my appointment goes.

I'm glad you found this forum. I know you will appreciate the people on here as much as I do.

Hang in there.

Babette

[mom4cem]

So sorry that you have to be here, but glad you are on the forum. I'm also a fellow Long Islander.

I am older than you but my symptoms started when I was about 24..gradually seemed to wax and wane and then peak in my 30's and still pretty much there in my 40's. After all these years I have not really had any diagnosis other than MVP and Dysautonomia. Mostly have been told over the years, anxiety or just "too sensitive" to my own adrenaline.

Many of the same symptoms I can sympathize with and over time I've just found to either avoid as much as possible what brings on symptoms (we know we can't avoid everything) or I try to really do things at a less hectic pace, try to fluid load before doing something I know will put a strain on my symptoms etc. I have given up a lot along the way but now I try to get some of those things back, like going to the movies(the loud sounds can send me over the edge..lol)..enjoying the summer etc. all in small doses.

Are you on any medications or have they suggested any to you or offered any type of suggestions?

[Broken_Shell]

Hi Michele,

Reading your post was like reading my diary!! It is so amazing what weird symptoms POTS can give you.

I am headed to Cleveland Clinic in Cleveland, Ohio on Monday. I'm not sure how close you are to them. I will let you know how my appointment goes.

I'm glad you found this forum. I know you will appreciate the people on here as much as I do.

Hang in there.

Babette

Hi Babette,

I am thinking of heading to the Cleveland Clinic. I understand that Dr. Robert Shields is the head of the autonomic center there. Can you please let us all know how your appointment there goes and what the doctor has to offer? Thank you!

~ Broken_Shell

[babettess]

Hi Michele,

Reading your post was like reading my diary!! It is so amazing what weird symptoms POTS can give you.

I am headed to Cleveland Clinic in Cleveland, Ohio on Monday. I'm not sure how close you are to them. I will let you know how my appointment goes.

I'm glad you found this forum. I know you will appreciate the people on here as much as I do.

Hang in there.

Babette

Hi Babette,

I am thinking of heading to the Cleveland Clinic. I understand that Dr. Robert Shields is the head of the autonomic center there. Can you please let us all know how your appointment there goes and what the doctor has to offer? Thank you!

~ Broken_Shell

Hi Broken_Shell,

I will be happy to let everyone know how my visit goes. I am see a cardiologist in the syncope lab. I am very excited to be seeing a doctor that actually knows what POTS is.

Babette

[Miriam Poorman-Knox]

Dr. Low at Mayo refers to these as "AUTONOMIC STORMS" . Knowing when they start helps,then have a plan. I don't remember do you still drive? Pots folks don't have issues with driving because we have problems upon standing. Big--Big-- Please remember in your desperation that not ALL of your symptoms are not likely from orthostatic intolerance. My pcp, keeps reminding me that she fears that I assume it is all pots and frankly for me its not. Welcome.....we are a bunch of folks who become "family". Some are on site often some not. Sometimes we just read whats happening. The site has been of great value to me. M

[mancmm19]

Dr. Low at Mayo refers to these as "AUTONOMIC STORMS" . Knowing when they start helps,then have a plan. I don't remember do you still drive? Pots folks don't have issues with driving because we have problems upon standing. Big--Big-- Please remember in your desperation that not ALL of your symptoms are not likely from orthostatic intolerance. My pcp, keeps reminding me that she fears that I assume it is all pots and frankly for me its not. Welcome.....we are a bunch of folks who become "family". Some are on site often some not. Sometimes we just read whats happening. The site has been of great value to me. 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!

[mancmm19]

Hi, welcome to the forum. I have at least 35 of the 47 symptoms you listed, as well as some others. It definately sounds like you have POTS. I would really suggest seeing a doctor who specializes in autonomic disorders. I was diagnosed at the Mayo clinic in Rochester Minnesota in 2006 and they seem to understand this stuff pretty well. Also know that everyone on this forum is extremely helpful and supportive. If you have any questions or concerns don't hesitate to post. Also, we are pretty close in age so if you ever need to vent or anything you can send me a message. Hope some of this helps.

Candace

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

M

[Broken_Shell]

Hi Michele, Miriam & Others,

I was just reading the dialogue about POTS vs. non-POTS symptoms... I don't know if this helps to clarify, but I think that the differentiation is whether a symptom is related specifically to POTS or just to dysautonomia. For example, lightheadedness and palpitations when standing can be attributed to POTS, but a lot of the other symptoms we tend to experience (like gastrointestinal symptoms, excess or lack of sweating, myofascial pain, etc.) result from autonomic dysfunction, but they do not necessarily result from POTS as it is defined. My understanding is that POTS is just one "subtype" or symptom of dysautonomia. People can have dysregulation of all sorts of autonomic functions without having POTS per say. To me dysautonomia is the syndrome of which POTS can be a symptom. (The way that shortness of breath with exercise or cough are symptoms of asthma). Does that sound right?

~ Broken_Shell

[mkoven]

I think many of the symptoms can be pots-related, as they can come from misdirected bloodflow, as your body struggles to keep a steady flow going to organs, brain, etc.

[casey311]

Welcome. I'm kind of new here too. I was diagnosed in October and am heading to Cleveleland on Tuesday and I can't wait. I'm not able to get on here that much but it is a pool of information and everyone is so nice and helpful. I hope you find some answers.

[mancmm19]

Hi Michele, Miriam & Others,

I was just reading the dialogue about POTS vs. non-POTS symptoms... I don't know if this helps to clarify, but I think that the differentiation is whether a symptom is related specifically to POTS or just to dysautonomia. For example, lightheadedness and palpitations when standing can be attributed to POTS, but a lot of the other symptoms we tend to experience (like gastrointestinal symptoms, excess or lack of sweating, myofascial pain, etc.) result from autonomic dysfunction, but they do not necessarily result from POTS as it is defined. My understanding is that POTS is just one "subtype" or symptom of dysautonomia. People can have dysregulation of all sorts of autonomic functions without having POTS per say. To me dysautonomia is the syndrome of which POTS can be a symptom. (The way that shortness of breath with exercise or cough are symptoms of asthma). Does that sound right?

~ Broken_Shell

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?

[mancmm19]

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

[Broken_Shell]

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

Hi Michele,

Sorry if I made you more confused with what I wrote. I really think it's just a matter of semantics and opinion... I copied this from the home page of this website...

Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.

Postural Orthostatic Tachycardia Syndrome

Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up.

The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand.

So, I stand corrected in saying that POTS is a syndrome with symptoms, but in my way of thinking it is a specific example of an autonomic dysfunction. It probably depends on how your doctor defines things too. I don't think either way is "right" or "wrong". The doctor who diagnosed me referred to my symptoms as dysautonomia. My understanding is that if I only had symptoms of orthostatic intolerence then I would just be diagnosed with POTS, but since I also have a lot of gastrointestinal, blood sugar, pain, etc. symptoms then my diagnosis just becomes dysautonomia because more than just my cardiovascular system is affected. I hope that helps to clarify what I meant to say. I think that everyone on this website is talking about the same thing no matter what we call it... kind of like potAto/potato with the short and long "a" sound This isn't a scientific article or anything, but it's something I read several years ago that really tied my symptoms together into a single diagnosis instead having everything as a big puzzle. It refers to the big picture diagnosis as dysautonomia and POTS as a subtype of it, so that's probably why I started using that name for it too. If you want to take a quick browse the link is http://heartdisease.about.com/cs/womensiss...ysautonomia.htm.

I hope that helps explain what I meant Sorry again about causing confusion.

~ Broken_Shell