(please bare with me as I have a long story and list of symptoms. I will list symptoms at the end so if you really want to skip everything else just scroll down (: )
I am 20 years old and have been ill in some way for as long as I can remember. When i was around 7 years old i had my first panic attack. I also began losing a lot of energy i had always had, difficulty swallowing, even things that now seem like tics such as scrunching my nose over and over all day every day.
When I was 15 I was diagnosed with major hypothyroidism (before which I had been diagnosed bipolar after suffering from horrible depression when I was in 7th/8th grade) after treatment for hypothyroidism for a while and finding the right dosage, I started feeling so much better! I wasn't tired all the time or dizzy or gaining weight or anything! Then stupid teenage me stopped taking all the meds prescribed to me (also including lamictal and Wellbutrin) if my memory serves me right (which honestly I'm not sure it is because my memory has slowly faded in the past couple years) I was told by my therapist I was better and didn't need meds anymore.
My senior year of high school was when I really started to feel ill again, but new symptoms started arising. I was absent for a majority of the year ad was lucky to even graduate!
The summer after my graduation, i was feeling on top of the world (still not taking meds except vyvanse i had been prescribed towards end of senior year). But When I went off to college I started feeling very ill again. I began sleeping for abnormally long amounts of time. One specific time I slept nearly 24 hours. After one semester away from home, I was forced to move back due to poor decisions I had made.
This is when my previous symptoms became even worse again and developed new symptoms with vision. All over body pains were at an all time high, feeling like I'd be sick or pass out from all the pain. I soon discovered an enlarged "bump" in my neck that caused neck pain. Vision issues around this time included seeing everything that moved as "stop motion" like it wasn't flowing correctly and I began having blurryness in one eye at a time every now and then out of nowhere. In general i began to feel like i was s little old lady on the inside and a 19 year old on the outside. I went to the ER twice in one month once for very sore throat with white spots on tonsils (they did several tests and had NO idea what it was!) and another time for severe pain under rib (which I eventually found out from another doctor that it was due to an abundant amount of backup due to constipation. I had no idea I was constipated as I was pretty regular!) I started trying to take my hypothyroidism meds again but failed at keeping them up as I felt it wasn't working.
Soon after I moved back to where I was born and started to feel a little better. Still had swollen bump in my neck but pain wasn't as bad. Then soon after meeting my boyfriend I had pain again and fatigue and even issues breathing in sleep. I was taken to ER one night when my boyfriend was woken up by me gasping for air (about every 30-60 seconds) and would not breathe otherwise. I was in and out of consciousness and couldn't respond to anyone. The doctors didn't know what caused it but assumed it was maybe just a panic attack. But how can I have a panic attack in my sleep?
Recently this has gotten worse. I wake up several times in a night gasping for air, feeling as though I have stopped breathing in my sleep. Panic attacks have definitely started but end in the same way as previous fit: not breathing for long periods of time, in and out of consciousness, sometimes my body convulses and apparently my eyes roll to the back of my head or eyelids flutter.
Recently I had an MRI focused on pituitary glad to check for prolactinoma and instead found 4mm "something" in my right frontal lobe that I'm going to get checked out with another MRI a week from today,
okay so now that there's an understanding of previous medical history here are the symptoms I have been having that have recently been getting worse and worse over the past 6 months or so (btw I have been back on my hypothyroid meds taking them every day at the same time without fail for several months now and my tsh levels are still high and was prescribed Wellbutrin again but not making ANY difference, in fact I think I feel WORSE since I began taking it)
Headaches every day (but they are like pressure and only in a few specific spots in my head, lasting a few seconds at a time)
Dizzyness (sometimes with nausea)
Feeling drunk but totally sober
Extreme mood swings
Slowed sometimes slurred speech
Elevated tsh levels (last checked around 14)
High chloride levels
High potassium levels
Driving down a familiar road or being in a familiar place and suddenly looking/feeling unfamiliar
Many eye floaters
Double vision from time to time
Extreme sensitivity to light, sometimes accompanied by a feeling of my eyes crossing or rolling
Spasms in eyes, eye lids, eyebrows, sometimes cheeks, and other random body muscles
Bone and joint pain especially in hips, knees, wrists, elbows
Exema (I know I didn't spell that right lol)
Tiny red dots covering arms look like tiny blood dots
Unbelievably easy bruising
Heart randomly beats faster/harder
Random feelings of nervousness
Horribly vivid nightmares (I've had for years but recently so much worse)
Pain in breasts and swelling
Joint popping in hips an knees when trying to walk
Intolerance to heat and cold
Chills and night sweats
Pain in neck, shoulders, and arms especially when lifting things
Lower back pain
Cramps in muscles, lower abdomin, stomach, and what I think is ovaries and sometimes uterus
Random "asleep" sensation (numbness/tingling) in arms and legs
Cold hands and feet
Feeling cold but feeling warm to the touch
Tops of shins randomly hurt, as do bottom of feet
Strange hiccupburps (I have no idea how to describe any other way)
What looks like a rash from scratching an itch on breasts
Often feeling the need to urinate
Trouble with bowels
Trouble breathing for no apparent reason, sometimes having to yawn a lot to try to take deep breaths
All over body pain doesn't seem to get any relief from any pain meds prescribed or given at ER
Honestly this probably isn't all of the symptoms I have my memory as stated before has been bad lately
I was tested for Lyme disease earlier this week and waiting on results. Can Lyme disease cause abnormalities in brain? I have been having some of the same symptoms since I was very young and remember specific time of having a bug (almost positive it was a tick) literally half sticking out of the same side of my neck where bump has formed, possibly the exact spot now that I think about it.
If it turns out to be Lyme disease that has develope Over the course of about 13 years will it still be treatable?
Thank you for reading and please somebody, anybody can help me understand what is going on???
Hi...I did not read thru all of ur symptoms, but just enuff to know u need a Dr that knows ehlers-danlos and POTS as they can be part of what is going on.
EDSers do have easy bruising and can be slow to heal, and do not absorb vitamins and minerals from foods and supplements as we should so other symptoms can be from low levels of vit D, B12, calcium, magnesium and potassium....It also can cause joints to sublex or pop out of joint, many have be hyper mobile.....have stretchy skin, and other issues as there r many types of EDS....
See a rheumatoid Dr that is familiar with this condition and go from there,
I will look into that a little more, but I've had those levels checked you mentioned and everything was normal except vitamin d was low and potassium was high. I started taking vitamin d pills 1000 units every day like the doctor told me, and have been taking for a few weeks and doesn't seem to change anything. I feel that every day I get worse and worse (with the exception of a day here and there where I actually feel like I can get out and do things)
So sorry that you are having so many health problems, my heart goes out to you. I was recently diagnosed with lyme disease and I can tell you that there is no definitive test for this disease.It is experience and observations that need to be done by a lyme literate doctor.
If your D level is low 1,000 IU's will not do it. Be sure that you are taking D3 not the D2. Once you have reached an optimal level you need to be taking 3,000 IU's just to maintain that level, the 1,000 is useless and your level will never go up with this dosage Some people begin to move up at 5,000 but others need to raise it to 10,000. 20,000 IU's is needed at times but only for short periods.
I came into this thread rather late. How are you doing and did you find yourself a lyme doctor?
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