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mancmm19
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Hi Everyone,

I hope you are all doing well! I just came back from my Cardiac Electrophysiologist and it was a bitter sweet visit. Some of the things he said left me very hopeful, and other left me simply confused. He diagnosed me about a month ago, and told me to keep well hydrated, have lots of salt, and do aerobic exercise. Well, I must admit I have been slacking on the exercise part (who wants to work 9-5:30, feel exhausted and then come home to run on the treadmill?!) but I have been drinking lots of fluids and have A LOT of slat (possible TOO much.) My doctor said that in 95% of his POTS cases, they all get completely better after exercising and building up their muscle tone. However, I feel miserable when I exercise and usually end up feeling worse off than before I started. Whenever I go for a run or walk, my vision gets very strange. It looks like I can see the blood vessels in my eyes and I see millions of particles that move toward a center point. Everywhere I look, I see this "tunnel" of moving particles and it makes it look like the floor, walls, everywhere I look is "falling in." This throws off my balance a lot and even after I lay down and close my eyes to regain my breath and compose, I can still see the particles moving with my eyes closed!

Well, I have been in the process of trying to figure out whether I JUST have POTS, I have POTS and Lyme (tested 3 times positively but was on abx. for a year and 3 months with no improvement), or I have POTS and some other yet-to-be diagnosed condition. I need some answers...I feel like I am going crazy! I told him a bunch of my symptoms, some he said could relate to POTS and other he had never heard of. I know that he doesn't treat too many patients with POTS and seems to believe exercise is the cure. However, after being on these forums for the past 3 weeks, I have a feeling he might not have all of the information. If exercise was the key, then we would all feel great...right?!

In an effort to take my health into my own hands, I have compiled a list of my symptoms in hopes that if anyone has the same symptoms, they can let me know which specific ones they have. I feel that this is the only way I will really be able to see what's related to POTS and what isn't, by asking the people (you) who have it! Thank you in advance for your responses...it will mean a lot.

Everyday Symptoms (there are a lot, I know.)

? 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 like I need to catch my breath, need to take a deep breath

? Feeling ?out-of-it?, Brain Fog. 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)

? 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, clouds

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 has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that :)

? Bladder pressure/tingling sensation after urinating on occasions

? 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 or the bed is moving, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(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.)

"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.

PLEASE HELP! If you know what I am talking about with any of my symptoms...please let me know. Most of them are so indescribable that I can't find anything about them online to relate to anyone else. I guess Google has a hard time reading my mind :) Thank you again!

Michele

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Guest brianala
Everyday Symptoms (there are a lot, I know.)

? 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 - Only sometimes for me

? Feeling like I need to catch my breath, need to take a deep breath - Only sometimes for me

? Feeling ?out-of-it?, Brain Fog. 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)

? Increasingly significant tinnitus/pulsing sensation in ears (with my heartbeat)

? Ears constantly ?go out?- Everything will sound distant - Only sometimes for me

? 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 - Only sometimes for me - this is what I have seen referred to as an "ice pick headache"

? Visual problems

o Trailing vision

o Shaky vision

o Flashing vision

o Extreme after images

o Bright lights, clouds

o Black/neon spots

o Palinopsia (visual snow) - This is pretty much a constant thing for me

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 has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that :)

? Bladder pressure/tingling sensation after urinating on occasions

? 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 or the bed is moving, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(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.) - For me, it's mostly just the cold I cannot tolerate. I do ok with heat, unless it is extreme

Hi Michele,

I was going to list those symptoms I had in common with you, but there were too many so I just quoted your post and bolded the ones I have, also.

In addition, I have the following symptoms:

? Loss of vision/scintillating scotoma (periodic - migraine aura without headache)

? Loss of hearing (periodic - migraine aura without headache)

? Upper back/neck pain

? Knee pain/feeling of instability

? Almost constant palpitations

? Fainting episodes (although I have only fainted a few times, I have had many episodes of almost-fainting and feeling woozy)

So far I have been diagnosed with asthma, migraines, mitral valve prolapse, inappropriate sinus tachycardia, neurocardiogenic syncope, and orthostatic hypotension. I can't really tell you what symptom is related to what, though. I was on a beta blocker for about 6 months but I was not tolerating it well (depression and fatigue) so I was put on Midodrine.

I'm cautiously optimistic; the Midodrine so far seems to be greatly improving my day-to-day energy and helps me feel more like getting out and getting some exercise. I still have most of the other problems, but they are a little easier to deal with when you feel better and have more energy.

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Hi Michele,

Ok... interesting because I have never heard anyone describe that before. I also have something very similar to the experience that you describe after walking, and I have told my family about it for years but have no idea what it is. Everytime I go for a walk this happens, even if I have only walked a few minutes. If I look at anything with a "texture" or pattern - for example: the carpeting, the paint on the wall with the little sand specks in it, my leg (I usually have either a red or purple pattern on my legs, especially my knees), etc. - I feel like it's falling into a central point that I am looking at. I know this is wierd, and I don't really know how to describe it. It's like wherever I look is the central point.. for example, the place on the carpet where I look is a point and the resting of the carpet seems to be "moving into it" from all directions. I don't know for sure, but when I read your description of how you feel after walking, it was the only time that I have ever heard anyone describe something similar to what I experience. I am not sure what it is, but it usually passes within about 30 minutes after I stop moving. Regarding your other list of symptoms, I have highlighted below. Hope that helps!

~ Broken_Shell :)

? 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 like I need to catch my breath, need to take a deep breath

? Feeling ?out-of-it?, Brain Fog. 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) - I have a lot of times when my heart feels "funny" or "strained"

? 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)

? 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 - not sure exactly which catergory to put some of them under, my vision just seems "off" sometimes

o Trailing vision

o Shaky vision

o Flashing vision

o Extreme after images

o Bright lights, clouds

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) - people can sometimes feel this if they lay next to me

? 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 (I had a large weight loss of about 15 pounds when I first got sick and then have gradually lost about 10 pounds over the last few years after being a stable weight for about three years)

? Occasional neuropathy - shoots down arms

? Irregular menstrual cycle (ranges from 18-41 days) - I became ammenorheic for several years.

? Feel very ?hypersensitive? - mostly with medications or proprioreceptive stimulus to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that :)

? Bladder pressure/tingling sensation after urinating on occasions

? 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 or the bed is moving - I feel this way a lot when I eat or when I am upright, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(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 - read my above comments.

? 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.)

Hope that all worked ok with the coloring... :)

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Hi Michele,

Ok... interesting because I have never heard anyone describe that before. I also have something very similar to the experience that you describe after walking, and I have told my family about it for years but have no idea what it is. Everytime I go for a walk this happens, even if I have only walked a few minutes. If I look at anything with a "texture" or pattern - for example: the carpeting, the paint on the wall with the little sand specks in it, my leg (I usually have either a red or purple pattern on my legs, especially my knees), etc. - I feel like it's falling into a central point that I am looking at. I know this is wierd, and I don't really know how to describe it. It's like wherever I look is the central point.. for example, the place on the carpet where I look is a point and the resting of the carpet seems to be "moving into it" from all directions. I don't know for sure, but when I read your description of how you feel after walking, it was the only time that I have ever heard anyone describe something similar to what I experience. I am not sure what it is, but it usually passes within about 30 minutes after I stop moving. Regarding your other list of symptoms, I have highlighted below. Hope that helps!

~ Broken_Shell :)

? 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 like I need to catch my breath, need to take a deep breath

? Feeling ?out-of-it?, Brain Fog. 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) - I have a lot of times when my heart feels "funny" or "strained"

? 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)

? 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 - not sure exactly which catergory to put some of them under, my vision just seems "off" sometimes

o Trailing vision

o Shaky vision

o Flashing vision

o Extreme after images

o Bright lights, clouds

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) - people can sometimes feel this if they lay next to me

? 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 (I had a large weight loss of about 15 pounds when I first got sick and then have gradually lost about 10 pounds over the last few years after being a stable weight for about three years)

? Occasional neuropathy - shoots down arms

? Irregular menstrual cycle (ranges from 18-41 days) - I became ammenorheic for several years.

? Feel very ?hypersensitive? - mostly with medications or proprioreceptive stimulus to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that :)

? Bladder pressure/tingling sensation after urinating on occasions

? 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 or the bed is moving - I feel this way a lot when I eat or when I am upright, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(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 - read my above comments.

? 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.)

Hope that all worked ok with the coloring... :)

Hi Michelle,

Your symptoms are the ones highlighted in blue, right? And for your first portion of the reply...what an AHA! moment!!! That is EXACTLY what I experience! Everywhere I look turns into that central point and all the little specs move toward that point. It makes everything look as if it's falling in!!! I have told my neuro and eye doctor and neither had a clue...but you do! :) It gets 10x worse after walking or exercise (especially if it's bright out.) I also notice it on sunny days, in the snow, and while driving on occasions. I have a feeling it ha something to do with blood pressure but I just can't put my finger on the cause yet. I also see grid patterns when I look at the carpet or a speckled or tiled floor, but I think that has something to do with the florescent lights maybe? Have you ever looked at LED lights? They jump all around for me and move in waves, it looks like the little lights are hopping all over the place. On the train, they have an LED sign that shows the name of the next stop, and the lights always move, I can barely read it! I am SOOO happy that someone knows what I'm talking about!!!

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Hi,

Admittedly, I sort of scanned over this thread, but I just wanted to share something that I've been thinking recently. My cardiologist okay'd me for exercise as well which, in the past for me, has meant going for walks. I still would like to try walking occasionally, more to curb weight gain than anything else, but recently I have thought that building up my muscle mass might help, as I think your doctor suggested.

So for the past couple of days I've started with my arms (though starting with your legs might make sense what with the blood pooling associated with POTS). I have little five pound weights, and I do bicep curls, then put it behind my back and lift it up straight above my head (this might be a problem for those who get potsy when they put their arms above their heads).

I just wanted to put in a suggestion that instead of trying more cardio activities, you try some weight lifting to build muscle mass. Nothing too heavy or strenuous of course, but it might help.

Amber

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Michele--I didnt see this mentioned, but wonder if its related to the symptoms you mentioned. When Sara turns her head too far to the left or right, she goes blind(i.e. as a bat) . No doctor we have mentioned it too has an explanation. We just chalk it up to another dysautonomia thing or else related to the surgery she had for Chiari malformation. This is one more of the reasons she is prohibited from driving(as well as passing out, getting confused(lost) etc) AHHH the wonderful world of the never ending symptoms, huh?? :)

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Hi Michele,

I worked on a whole PM message for you earlier and couldn't get it to work. (I had copied and pasted your list onto WORD and then highlighted our similar symptoms and when I went to post it wouldn't work.) Brianala and Broken Shell did it and made it look so easy by just changing the color. So here goes.......My symptoms that are similar to yours are in purple and symptoms that I have added are in red.

Everyday Symptoms (there are a lot, I know.)

? 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 off balance/wooziness/feel like I'm moving when I'm not

? Feeling as if I can't take a satisfying, deep breath

? Feeling like I need to catch my breath, need to take a deep breath

? Feeling ?out-of-it?, Brain Fog. 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)

? 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, clouds

o Black/neon spotso 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 monthsI lost 15 pounds in one month

? 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 has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that

? Bladder pressure/tingling sensation after urinating on occasions

? 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 or the bed is moving, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(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.)

Chest pain/pressure

Neck/chest pain & pressure. Feel like I'm being strangled.

Legs tremble

forget words, forget how to spell,

walk with my legs spread wide out at times (when I'm having a bad spell)

Feel horrible during my period especially if I have a heavy flow

And many more that I'm forgetting at the moment.

"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, Sometimes my legs tremble horribley. 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 never drank so I don't know about that. I've always been told that these"spells" are panic attacks but I know they are POTS attacks.

For me the off balance/woozy/feel like I'm moving; the swallowing difficulty; the chest pain/pressure; exercise intolerance and the fatique are the most disabling symptoms. I do get very tachicardic with any exersion. All of my symptoms can come and come without warning and very quickly. This makes it very hard to plan anything as I never know how I'm going to feel on a minute to minue basis.

Sorry it took me so long to get back to you. Please PM me if you would like.

Babette

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Looks like CFS/ME/FM to me ... Since you have recognizable digestive issues, I'd start with food allergy / intolerance testing .. I had most of your symptoms too and was amazed when they just stopped happening ... most of the weird head feelings / visual problems took a year to eliminate so it's important to hang in there ... good luck ..

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I am a little suspicious of this doc that said 95% of his patients were cured with exercise. I have, over the course of two years, built myself up to a VERY respectable exercise routine. Right now I am able to exercise for about 4-5 hours a week. This took extreme determination to achieve. And I STILL have POTS symptoms that dramatically interfere with my life. I feel slightly better -- maybe 10% better -- than I did a year ago, and that may be due to the increased exercise. But in my experience, exercise alone does not account for POTS.

Here are the symptoms I have in common with you, in case it helps. I made bold the symptoms that bother me the most/are the most common for me:

? Malaise ? never feel good, vague feeling of something ?not feeling right?

? Lightheaded constantly. 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 like I need to catch my breath, need to take a deep breath

? 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

? Creaking/cracking in base of head/neck (usually upon movement but sometimes while head and neck are still)

? 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, clouds

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

? Occasional teeth chattering when I start feeling sick, then come the tremors, nausea, and the chills

? Occasional neuropathy - shoots down arms

? Feel very ?hypersensitive? to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that smile.gif

? Bladder pressure/tingling sensation after urinating on occasions

? Feel full all the time, no appetite, cannot eat large meals anymore

? 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 or the bed is moving, feeling like my blood is rocking up and down my body I've had this problem for YEARS, and I've never heard anyone else describe it!!! Sometimes this sensation actually wakes me up, and it often prevents me from falling asleep. It's VERY weird

? Body rocking while sitting up(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.)

It IS hard sometimes to figure out what is POTS and what is something else. I have hypothyroid disease, and I struggle to know which symptoms belong to which illness sometimes. However, over time I've learned to determine what "feels" like POTS fatigue vs. what feels like thyroid fatigue. I hope you are able to sort out what ails you, and get some relief.

Good luck,

jump

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? 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 like I need to catch my breath, need to take a deep breath

? Feeling ?out-of-it?, Brain Fog. 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)

? 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, clouds

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 has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired"

? GI Issues- I'll leave it at that

? Bladder pressure/tingling sensation after urinating on occasions

? 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 or the bed is moving, feeling like my blood is rocking up and down my body

? Body rocking while sitting up(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.)

Ive highlighted everything that i get. Im really surprised that you can work!!!! I have had most of your symptoms for nearly a year and there is no way that i have been able to work in that year.

hope you find answers! and when you do post back!!! it may help us all!

x

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just a thought...... you were probably crashing after alcohol because it was leaving you dehydrated. i remember before i got sick and would drink the next day all id want is ice cold water!

my big crash that has left me well crashed out for a year happened after a night out. i'd only had 3 glasses of wine......but i still wonder maybe if i hadnt of i wouldnt have crashed like this!

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Hi,

I have experienced much of what you describe. Some of what I experience is so hard to put into words so others understand, and it is sometimes hard when others describe some of the more different symptoms to determine whether or not that is the same thing that I experience. So, for some of the visual or tremor symptoms I wasn't as sure just because I think it is different for everyone, and everyone perceives and describes their symptoms differently. But, overall it would seem that POTS/dysautonomia could cause the majority of the symptoms you listed. But, that doesn't mean that there is not anything else going on etc...

I think that your cardiologist is limited in his experience with POTS and related disorders/conditions and that it would probably be helpful to see a specialist familiar with dysautonomia. There are a few drs. I think that are relatively close to you, if you look on DINET and past threads you can probably find a dr.

Exercise can be helpful, but is not the answer to everyone with POTS. If he said that 95% comment, makes me want to ask, how many patients he has actually had? Is he sure that it was all exercise and not meds? And possibly they just stopped coming to him because they were not getting enough help and went on to a more experienced dr, and in his mind because they no longer see him they are "cured". Who knows? B)

:)

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Guest brianala
I am a little suspicious of this doc that said 95% of his patients were cured with exercise. I have, over the course of two years, built myself up to a VERY respectable exercise routine. Right now I am able to exercise for about 4-5 hours a week. This took extreme determination to achieve. And I STILL have POTS symptoms that dramatically interfere with my life. I feel slightly better -- maybe 10% better -- than I did a year ago, and that may be due to the increased exercise. But in my experience, exercise alone does not account for POTS.

I agree with this completely. I may be new to the concept of dysautonomia, but whatever I have, I've had all of my life. I have also been very active, and am in great shape physically. I used to be in weight training, and I still exercise and go for walks on a regular basis. On a good day I can walk 4.5 miles on my lunch break. None of that seems to have stopped me from having the problems I do. While the exercise might help to some extent, I have to laugh at the idea that it can "cure" dysautonomia.

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I can ID with a lot of the sypmtoms you listed, though not all of them. For example, the neuropathy, shooting down your arm--that one is NOT on my list. But vision stuff, excercise intolerance, and many others are totally POTS.

One that I do not think is POTS, but perhaps it is, is the episode of heat rushing through the viens. I had that experience twice, both times were post-POTS (I mean, I had POTS at the time). However, both times were after eating chinese soup. And an allergist told me it sounded like an allergic reaction. It literally felt like fire surging through my viens. It was horrible, nauseating, and totally wrecked my energy for the coming days, though it only lasted about an hour. I also felt like I was swelling up, but I wasn't at all. Maybe you have allergies to something? I developed a number of food sensitivities after getting POTS.

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  • 2 weeks later...
My doctor said that in 95% of his POTS cases, they all get completely better after exercising and building up their muscle tone

Im sorry but your doctor is full of ****... In which study is it demonstrated that any patients with POTS get better? It has been theorised that some patients become 100% better, but most just wax and wane.

The autoimmune variety of POTS is more likely to go into spontaneous recovery than the other forms, but its fairly rare im afraid.

If I were you Id assess whether your form of POTS fits any of the newer described forms of POTS - such as Julian Stewarts work on normal flow and low flow pots and the role of nitric oxide. Increasing and decreasing bioavailability of nitric oxide is already possible and could find theraputic application in POTS relatively soon.

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There are just soooo many questionable things here. First, I was teaching 3 aerobic classes a day, doing stairmaster 45 min 5days/wk. Training members to properly use weights free and machines. I was in shape, then my crash started. I still was teaching and working. Sleeping every chance possible. Then came the exercise intolerance. Boo.

Once diagnosed, still in hospital. Doc said that muscle tone very important. Right there in the be I started leg lifts and other exercise in bed, then added 2xd in bed or floor. (on purpose).

Second, this theory doesn't take into consideration the other co-morbidities. Some of the diagnosises we have indeed limit our fitness abilities.

Sorry, didn't mean to rant. M

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My doctor said that in 95% of his POTS cases, they all get completely better after exercising and building up their muscle tone

Im sorry but your doctor is full of ****... In which study is it demonstrated that any patients with POTS get better? It has been theorised that some patients become 100% better, but most just wax and wane.

The autoimmune variety of POTS is more likely to go into spontaneous recovery than the other forms, but its fairly rare im afraid.

If I were you Id assess whether your form of POTS fits any of the newer described forms of POTS - such as Julian Stewarts work on normal flow and low flow pots and the role of nitric oxide. Increasing and decreasing bioavailability of nitric oxide is already possible and could find theraputic application in POTS relatively soon.

How do I find out what Kind of POTS I have?

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First we all have an Autonomic Dysfunction.........now.

Basically if your are falling down or passing out that is POTS.

That is why we can stil drive, the problems aren't when sittin. (over simplifying)

Orthostatic intolerance is when your body "is on the move" or at rest and your insides keep movin. Think about an amusent park ride. I still want to puke when I remember going on the tilt a whirl in 1986 with my daughter. I'm moooovinggg................

Other than that I think that the "sides" that accompany this disorder that make it hard to know.

I remember having the absolute fear when this started. I would wake up in different Emergency rooms being asked do you know where you are? Nope

After I know fluid, fluid,salt salt, compression garments, I'm hot...-20 I slept with window open!!!

Answers will come pick the pieces that are most troubeling and your puzzle pieces will come together Hope this helps M

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First we all have an Autonomic Dysfunction.........now.

Basically if your are falling down or passing out that is POTS.

That is why we can stil drive, the problems aren't when sittin. (over simplifying)

Orthostatic intolerance is when your body "is on the move" or at rest and your insides keep movin. Think about an amusent park ride. I still want to puke when I remember going on the tilt a whirl in 1986 with my daughter. I'm moooovinggg................

Other than that I think that the "sides" that accompany this disorder that make it hard to know.

I remember having the absolute fear when this started. I would wake up in different Emergency rooms being asked do you know where you are? Nope

After I know fluid, fluid,salt salt, compression garments, I'm hot...-20 I slept with window open!!!

Answers will come pick the pieces that are most troubeling and your puzzle pieces will come together Hope this helps M

I was diagnosed with POTS because of my Tilt Table Test. I have very low BP all the time, and upon raising me up, my blood pressure dropped and my heart rate increased, and it stayed that way until they put me down. I have symptoms all the time though, I get the "I'm about to pass out heart pounds" when I stand up and some days are worse then others. But i also get sick sitting, lying down sometimes, from heat, being dehydrated, and so forth. I get sick after riding an elevator and things like that. Is that OI? I'm trying to figure out what you mean about "Orthostatic intolerance is when your body "is on the move" or at rest and your insides keep movin." Is this why I get sick after a boat or on an elevator, because it feels like I'm still moving for hours later. I guess I have Dysautonomia which causes all of my everyday symptoms, and the POTS is what causes the symptoms upon standing?

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What I meant was that OI or POTS are the "umbrella" then there are other diagnosises. And that with time and treatment we do find as much as we can. Yet there are some things that canot be explained. M

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hi michele - i experience nearly all of the symptoms you listed, my worst ones being heart issues and the pounding/pressure/pulse in my head and neck. i, however, did not have an abnormal tilt table test except for a heart arrythmia and i don't faint. but i do experience a lot of visual changes in conjunciton with moving my head, my eyes are never really focused, and i think i experience vertigo. i have been diagnosed with "pots-cfs-like syndrome." yes, that is my official diagnosis. answers a lot, huh??

i tried very hard for awhile at first, and still do, to exercise my problems away. i was an athlete for a division 1 sports team in college, which even won the national champs, so working out was basically like eating and sleeping to me. i refused to give it up, and all my doctors told me how great that was. well, eventually i realized it was causing way more harm than good, especially because i was pretty much brutally suffering through work-outs. my heart rate would be in the 250s the whole time, full of arrythmias. i've only recently begun to work out again, only this time with slow and steady as my motto. but any doctor who tries to suggest that exercise is a CURE warrants a second opinion, as i believe. i would definitely urge you to try to find a doctor who specializes, or at least greatly understands, autonomic dysfunction and its many causes. remember that POTS and CFS and FM are just names of symptoms - they don't explain causes at all. you have every right to want to continue to investigate your causes. i travel two and a half hours to see a team of five doctors (which is a lot of traveling, money and very exhausting), but soooo worth it. though i still have no answers:)

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Sorry I should explain my post - im not annoyed with you or anything, more what your doctor has pulled out of thin air as a fact about POTS - they seem to be full of these 'facts' and having spent six months studying EVERYTHING i can find about POTS and the dynamic systems involved in it I can tell you that most are BS.

That being said, there is definately hope. It is becoming apparent that the causes of POTS may be fairly easily resolved.

First we all have an Autonomic Dysfunction.........now.

Is that POts patients or otherwise?

Dysautonomia just means there is something wrong with your autonomic nervous system. THis isnt necessarily true of all POTS patients - some appear to have a deficit in nitric oxide which may be readily treatable.

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hi michele - i experience nearly all of the symptoms you listed, my worst ones being heart issues and the pounding/pressure/pulse in my head and neck. i, however, did not have an abnormal tilt table test except for a heart arrythmia and i don't faint. but i do experience a lot of visual changes in conjunciton with moving my head, my eyes are never really focused, and i think i experience vertigo. i have been diagnosed with "pots-cfs-like syndrome." yes, that is my official diagnosis. answers a lot, huh??

i tried very hard for awhile at first, and still do, to exercise my problems away. i was an athlete for a division 1 sports team in college, which even won the national champs, so working out was basically like eating and sleeping to me. i refused to give it up, and all my doctors told me how great that was. well, eventually i realized it was causing way more harm than good, especially because i was pretty much brutally suffering through work-outs. my heart rate would be in the 250s the whole time, full of arrythmias. i've only recently begun to work out again, only this time with slow and steady as my motto. but any doctor who tries to suggest that exercise is a CURE warrants a second opinion, as i believe. i would definitely urge you to try to find a doctor who specializes, or at least greatly understands, autonomic dysfunction and its many causes. remember that POTS and CFS and FM are just names of symptoms - they don't explain causes at all. you have every right to want to continue to investigate your causes. i travel two and a half hours to see a team of five doctors (which is a lot of traveling, money and very exhausting), but soooo worth it. though i still have no answers:)

Hi Valliali,

I am not glad to hear that you feel how I do but am glad that I am not alone or crazy!! I do not faint either...have felt like I was pushing the verge on several occasions but never downright passed out. I was diagnosed with POTS, how do I get a more accurate diagnosis or find out about CFS? People keep telling me that POTS is a general diagnosis and there are different kinds...I do not know how to go about finding out more information needless to say finding a doctor who actually knows enough to test me!

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Sorry I should explain my post - im not annoyed with you or anything, more what your doctor has pulled out of thin air as a fact about POTS - they seem to be full of these 'facts' and having spent six months studying EVERYTHING i can find about POTS and the dynamic systems involved in it I can tell you that most are BS.

That being said, there is definately hope. It is becoming apparent that the causes of POTS may be fairly easily resolved.

First we all have an Autonomic Dysfunction.........now.

Is that POts patients or otherwise?

Dysautonomia just means there is something wrong with your autonomic nervous system. THis isnt necessarily true of all POTS patients - some appear to have a deficit in nitric oxide which may be readily treatable.

How do I find out what kind of POTS/Dysautonomia I have...are there genetic or blood tests? Also, I noticed your symptoms say visual snow and I have been having TERRIBLE visual snow for the past 3 days now (I always have it but this is causing me to even have trouble driving). Do you notice anything that makes it worse/better?

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Michelle, I have ALL of the same symptoms you have. I have also had Lyme Disease.

One rheumy thought my issues are from chronic LD, but now I knwo they are NOT and am glad I never agreed to do the long term antibiotics.

I do believe the LD triggered symptoms and exasserbated symptoms, but my symptoms were there long before LD.

Eventually I would learn I had Ehlers Danlos Syndrome ... which can cause many of the same symptoms as LD, including POTS and other dysautnomia symptoms.

Have you been checked for hypermobility? Also, with the pressure in the back of your head, I'd also (as another poster suggested) would wonder about chiari malformation, which is yet another issue related to POTS, but also commonly occurs with ehlers danlos.

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