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Help! Epileptic with terrible pressure with pain in upper back

Hello. I have a question and would like to mention first off, I did make an appointment with my primary care physician but unable to get in until the 14th of November. I also am trying to avoid any urgent care or ER visits for the time being.

My question is pretty much what others input on what they believe could be going on with the symptoms I have so I can be ready to speak to my doctor and get a referral to a specialist because I don't think this is going to let up. I'm not asking for a diagnosis obviously, but what others with these symptoms and issues think this could be. I had issues in the past with doctors saying I'm too young for orthopedic issues, but I'm not the normal young person, considering I have grand mal epilepsy and some can be vicious and long. I've broken my ribs last March, dislocated my left sternoclavicular bone (the small round bone you feel in your collar bone) which at first I was told I had acid reflex due to unable to swollow food without choking, gagging and dry heaving and doctors at the ER didn't believe I had legit pain from an injury, believed I was having an anxiety attack until MRI showed otherwise. I then dislocated it twice more and the last time I also did something to my left shoulder blade but the pain subsided so I didn't get it checked out. I broke my toes and foot last August from a tv falling on top during a seizure. The injuries are constant and I was told to stop coming in for them unless it's severe or I see blood from the injury so I do try and avoid but this one takes the cake for me and to say it's worse than a dislocated sternoclavic bone is ridiculous. It's scary because it's my back and I'm not sure how serious it is and it's not just a broken toe.

A little background, I am a 32 year old female with refactory grand mal epilepsy. Refactory, meaning with medication they are still uncontrolled and not a candidate for surgery or implant. I've lost count of how many grand mals I've had in the last 11 years and I do have grand mals that I do not realize sometimes, especially nocturnal ones. I was diagnosed at 21 and I've had many concussions as well as whiplash. I've cracked my head on large speakers, broke ribs falling backwards on tables and others I have no clue how I fell or how bad the seizure was without witnesses. Sometimes I am injured from the fall itself and other things times I injure my own self with muscles contorting, sometimes both. I believe I had one in my sleep about 2 weeks ago when I first felt this awful pressure that turned into pain.

I immediately woke up thinking I slept in the same position all night long on top of a bunched up sheet or blanket or even maybe my shirt was bunched under me in-between my shoulder blades digging into my spine bones due to the intense pressure in my spine I felt in-between my shoulder blades. I realized I didn't see anything against my back and I didn't feel an impression plus my skin didn't hurt but it was deep pressure below my skin.

I would say this is somewhere in the T3, T4 and T5 area, but not positive. When I pushed myself up from the bed to sit up that morning, I felt intense pressure shooting into my upper ribs, under my breasts. I felt as well as heard crunching sounds in the cervical part of my spine as well as thoracic.

I suffer from migraines and terrible headaches that are not true migraines or true headaches with the same crunching noise and sensation, meaning the neurologist as of 3 months ago believes there is some sort of injury in my upper neck, somewhere between C4 and C5. I was supposed to get a referral to an orthopedic for this but I kept procrastinating. I've also had this pressure in my upper back before but it always just felt tingly or numb or like something wet was on my back in that area so i just ignored it because I had no pain. 10 years ago, an x-ray and MRI showed a misalignment between T1 and T2 due to a posterior element or ligament injury and suspected anterolisthesis/spondylolisthesis and kyphosis of T1 and T2. Me being in my early 20s ignored this like an idiot and continued to since I never had actual pain aside from headaches, just mild pressure off and on with numbness at times in that area.

Last week, this pressure became intense and the throbbing pain started a few days later. It feels like a bunch of encyclopedias are stacked in-between my shoulder blades on my spine. At times it still shoots into my ribs below my breasts with a similar pressure feeling like acid reflex is the only way to explain it but it's definitely not acid reflex. Every day for the last week, I wake up with this pressure slowly moving down my spine and although the pain stops right before my shoulder blades end, the pressure is moving right down my spine and in my mid back area. The pressure is so intense I'm nauseous. It's ridiculous trying to explain this because at the same time, this specific area is numb yet very painful and loads of pressure. It feels like it's swollen. I feel like you can see a bone pushed outward but there is absolutely no visiable swelling, no bones pushed out or redness at all. The crunching noises if I move a certain way catches me off guard and the sensation along with the noise is like nails on a chalk board. The crunching itself doesn't cause discomfort.

I've struggled for almost 2 weeks for sleep now due to pain, pressure and definite discomfort though. I have to constantly change positions every 5 or so minutes and usually find myself in the same weird position when I wake up which is me in a fetal position on my right, pillow inbetween my legs, head on a couch pillow, another pillow pushed under my side and another pushing that pillow into my upper back for support. I have to lay on my right side apparently and always find myself with my right arm under the pillow my head's on raised up, my left arm over the pillow raised up with my hands in a praying position above my head. Every night I struggle and fight my pillows to get comfortable. I find myself falling asleep out of pure exhaustion at 5 or 6am unless I just give up fighting my pillows and just stay up. I dread nights so much now.

If this keeps happening I know restless sleepless nights are going to trigger more frequent grand mals so it sucks.

I can't stand up straight. I'm not totally hunched over but I do bring my neck down a bit and very protective of my upper back. It actually hurts more and more pressure if I lay or sit but standing I can get some mild relief if its no longer than 10-15 mins. I have never in my life had such pressure or any kind of back pain to this degree. I've had sore muscles or my lower back sore but nothing close to this.

I have also had waist down temporary paralysis when waking in the morning. I've had this before several times a few years ago which neurologist told me was seizure related but now I think may be spine injury related since it started up again. It lasts no longer than 5-10 minutes and each time I basically try to stand out of bed and hit the ground. I feel absolutely nothing. No pain, no tingling numbness and nothing like when a limb goes to sleep. Just nothing. It scares me because it's happened twice in the last 2 weeks and afraid one day that paralysis will stay forever.

Any input on injuries or conditions that go with my symptoms? I'm trying to be calm but geez, I'm already just done with this and want my doctor to listen, order an x-ray and an MRI before I get an appointment with an orthopedic so I can have it done when I see them. I'm sick of being brushed off because I'm "young" but I'm not the normal 32 year old walking in with injuries. If I could, I would wish the epilepsy gone.

Symptoms I've noticed that progresses in the last 2 weeks:



Neck and upper back tightness and stiffness



Pressure and pain in spine inbetween shoulder blades



Pressure without pain from below shoulder blades to mid back (gets lower every few days and most noticable when waking up)



Pressure with some pain at times moving into upper ribs under breasts



Headache that starts in the neck



Mild pain at times in the left shoulder blade and upper left arm



Pins and needles in upper back left arm and both hands



Numbness and tingling in fingers



Waist down temporary paralysis when waking in the morning (has happened twice in 2 weeks)



Issue turning head and bending neck



Grinding crunching noises and sensation when turning neck or bending, even to get up from bed



Hurts more laying or sitting



Noticed tripping/stumbling often



Mild muscle spasms in mid back (may be due to body protecting itself from pain)



I've noticed I'm dropping things due to pins, needles and numbness in fingers


Thank you to anyone who took a few minutes to read my long post.

I just want to add again I'm not looking for a diagnosis but possible causes to my terrible discomfort.

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