Strange Symtpoms...pots? Please Help :(

[Miriam Poorman-Knox]

I didn't mean to imply that I thought your symptoms weren't from dysautonomia. Since pots is related to standing, and you related issues while friving, I meant that dysautonomia, Postural orthostatic tachycardia, orthostatic intolerance_--=similar symptoms I will answer your other questions after a nap.M.

[HoudiniCat]

Before I was dx?d with POTS I began keeping a list of all my symptoms as I noticed my memory wasn?t 100%. It?s almost EXACTLY THE SAME list as yours. After seeing numerous doctors who chalked it up to anxiety, I was hesitant to share the list with any more for fear of hearing the same thing. When I finally got an appointment with a POTS specialist, he took one look at it and said, ?yep, that?s POTS?. My triggers are the same as yours ? or most annoyingly ? I?ll get an episode from no trigger at all ? totally out of the blue. The randomness of POTS was one of the most difficult aspects for me to deal with in the beginning. I was sure I had something else as well.

I also could get these symptoms 24/7 no matter what I was doing. No big position change (like standing up). I?d just be sitting on the couch or even laying down in bed and be experiencing many of them.

Dysautonomia is a broad term that covers malfunctions of the central nervous system. POTS is one of those malfunctions. Call it what you want, I just think of it as my CNS being screwed up (for now) and I have to find the best way to manage it and live life the best I can.

I?m sure you will find a wealth of information here. This site has been a life-saver for me. Type in your most bothersome symptoms on any given day into the Search feature and you?ll come back with tons of tips, information or just another person that is going thru what you?re experiencing ? it really helps. Welcome.

[mancmm19]

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?

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

[mancmm19]

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

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

[Miriam Poorman-Knox]

Hi,

Second cup of coffee kicking in sooo. Many folks with dysautonomia have "metabolic syndrome" (brain fart) google it.!!I will remember though. So while getting hydrated and a proper sodium load, your blood sugar etc. can be having their own party.

This is my own "Gospel according to Miriam"

We ALL experience anxiety with this or any other chronic disease. Your doctor saying you were to sensitive to your heart rate? should be dope slapped. Your body is most likely sending message to you (danger-drink h2o,salt). There have been many posts about therapists/therapists here. Many feel that they will be labeled as not mentally full???. If you can have someone to talk to who will be your "vent" do it. I think it is the best gift you can give yourself.

My sermon is over.........M

[mancmm19]

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

Hi DelphicDragon,

Glad to hear that someone out there can understand my chattery teeth reaction! When I start to not feel well, I am fine. But as soon as to begins to get worse, I get very nauseas, my teeth chatter, the chills, I need to go to the bathroom, I yawn a lot (which also causes like a "shiver" in my abdominal muscles, and this will last anywhere from 30 minutes to hours.

The stabbing pain in my head is very intermittent and doesn't seem to have a set pattern which is hot. Very often it will only occur once or twice in a few minutes and then not happen again the rest of the day. I used to be on Topomax right when I first started getting sick because they thought I might have optic migraines...the medicine did not help though and was causing numbess and tingling so I went off of it.

Thanks for the reply and I hear ya on the 9-5...it's rough! I just enjoy my free time and relaxing as much as I can and occasionally, when I don't feel good and I'm stuck at work, I go into my car for a few and put the seat back and lay down. Just a tip

Michele

[mancmm19]

Before I was dx?d with POTS I began keeping a list of all my symptoms as I noticed my memory wasn?t 100%. It?s almost EXACTLY THE SAME list as yours. After seeing numerous doctors who chalked it up to anxiety, I was hesitant to share the list with any more for fear of hearing the same thing. When I finally got an appointment with a POTS specialist, he took one look at it and said, ?yep, that?s POTS?. My triggers are the same as yours ? or most annoyingly ? I?ll get an episode from no trigger at all ? totally out of the blue. The randomness of POTS was one of the most difficult aspects for me to deal with in the beginning. I was sure I had something else as well.

I also could get these symptoms 24/7 no matter what I was doing. No big position change (like standing up). I?d just be sitting on the couch or even laying down in bed and be experiencing many of them.

Dysautonomia is a broad term that covers malfunctions of the central nervous system. POTS is one of those malfunctions. Call it what you want, I just think of it as my CNS being screwed up (for now) and I have to find the best way to manage it and live life the best I can.

I?m sure you will find a wealth of information here. This site has been a life-saver for me. Type in your most bothersome symptoms on any given day into the Search feature and you?ll come back with tons of tips, information or just another person that is going thru what you?re experiencing ? it really helps. Welcome.

Hi HoudiniCat,

That is how I have such a long symptoms list...after I began realizing that this was something that wasn't going away, I began forgetting the numberous doctors visits, ER trips, episodes and what not. So I began writing down each weird symptom that I had, whether it was everyday, once in a while, or not so often. Sadly, I can say that most of those symptoms I experience every week if not everyday.

I too got the "it's all in your head, but you look fine, you're just oversensitive" run-around. I am still searching for a doctor who knows a lot about POTS to help me in figuring out whether everything is related to POTS or whether it's something else as well. My episodes were guaranteed to happen within 24 hours after drinking, and I have related them to stress, heat, and my period. However, this is just what I have noticed. There were also days where I was in the heat for example and I didn't feel well but didn't have an episode, or times where I had an episode for what seemed to be like no reason at all. POTS is tricky I assume, because no matter what I do to try and avoid having an episode, I still don't feel good each and every day. I can't really say that I've felt "normal" and like my old self one time in the past 2 and half years.

I agree with you that although symptoms of tachycardia, lightheadedness, etc. are worse upon standing or changing position, but I, like you, have many while sitting or lying down. I have noticed that even sitting at my desk for hours makes me not feel good, and lying down seems to be the position that I feel "best."

I hope that you have a good weekend and I am beginning to love this site as well. The overwhelming amount of positive responses and willingness to help have done more for me than any doctor has done since October 2007...so thank you

[mancmm19]

Hi,

Second cup of coffee kicking in sooo. Many folks with dysautonomia have "metabolic syndrome" (brain fart) google it.!!I will remember though. So while getting hydrated and a proper sodium load, your blood sugar etc. can be having their own party.

This is my own "Gospel according to Miriam"

We ALL experience anxiety with this or any other chronic disease. Your doctor saying you were to sensitive to your heart rate? should be dope slapped. Your body is most likely sending message to you (danger-drink h2o,salt). There have been many posts about therapists/therapists here. Many feel that they will be labeled as not mentally full???. If you can have someone to talk to who will be your "vent" do it. I think it is the best gift you can give yourself.

My sermon is over.........M

Hi Miriam,

Thanks for the info...I did google "metabolic syndrome", but I will have to read a bit more about it. I definately get anxiety, especially when I can feel an attack coming on, just because I'm scared and feel like I don't know what is going to happen to my body. My attacks feel like my whole body is shutting down and I'm on the verge of death, so even though I know I've gotten them many (too many) times and they always pass, each one is still as nerve-racking as the first. I also get "anxiety" doing things because I'm always thinking about how I feel or how I might feel. I need to re-wire my brain to not pay attention to how sick I feel all the time but that is easier said then done. Just having this diagnosis has brought a great sense of relief to me, because although I may still feel sick, I know what is causing me to feel that way and what I can do to best help myself.

I would talk to a therapist, it isn't something that I am against. Just difficult being I work 9-5:30 and have a 40 minute drive each way to work. Who wants to go talk to someone for an hour when they feel like they are ready for bed?! This forum has been my "therapist" and I am very happy I found it. As I have stated before it has been a saving grace so thank you. Everyone needs to vent, even people who aren't sick (we just have a better excuse )

Good sermon!

Michele