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Avatar universal

Constant head sensation/pressure, nausea, weakness, terrified!

Hello. 28/f

At 11, I started having migraines.  Rarely have them now.

2012- I fainted in my bosses’ office.  I had just started taking new birth control.  Called my doc; he said come in if it ever happened again.  It didn’t.

2013- December 2013 I came down with a common cold.

January 2014- I got the flu.  Chills, fever, runny nose, and a cough that lingered totaling almost 3 weeks.  A long time for a flu.  I recovered (Not everyone did.  This flu strand was an absolute monster this year).

February 2014

I drank a half a glass of red wine.  Immediately after I got a throbbing intense headache.  It felt like something was grabbing my brain and squeezing it.  This was the first headache I had that was completely different from migraines I have had in the past.  I instantly feared a brain tumor.  I took an Excedrin migraine and the headache immediately went away.

ER Visit 1

At the end of February, I started feeling an annoying pressure in my head.  It would come and go so infrequently.  Then, I got a really bad taste in my mouth, and eventually nausea pretty severe.  I also started feeling extremely hazy and out of it.  I was terrified.  Went to ER.  Gave me a CT scan since this was a “migraine variant”.  Results= normal.  Gave me pain meds, said I had a migraine.  

Urgent Care Visit

Symptoms continued.  Google told me I had a brain tumor.  With this in the front of my mind, I went to Urgent care 5 days later.  I passed the neurological exam with flying colors.  He said keep my neurologist appointment I had the following week.  He reassured me that CT scan would’ve showed tumors, “well most tumors”.  I asked about an MRI, and he said my neurologist might order one, but maybe not.  But when he said CT scans show “most” tumors, I knew in my mind I had to have the MRI.  

ER Visit 2

The next day I went back to the ER, but they did not give me an MRI; they do not do advanced imaging.  They gave me fluids, nausea medication, and said they agreed that I needed some more advanced diagnostic testing.  

Neuro 1

Finally saw the neurologist.  She suggested maybe my thyroid.  I told her Google told me I have a brain tumor.  She told me it was “highly unlikely”. She would order an MRI for me if after thinking it over I really wanted one because she knows some people have to see it to believe it, but she was 99.9999% sure I did not have a tumor.  I did not have the symptoms she would expect someone to have at this point.

Surely a few days later, I started having really weak legs, sometimes arms.  Were these the symptoms she would expect someone to have?  I called her left a voice mail asking for the MRI.  Call was never returned.

Gyno

I went to my caring, gyno.  I expressed my deep concern, so he ordered an MRI for me and checked my thyroid.  Both came back normal.   I was so relieved…for a while.

My symptoms continued and more crept up.  I continued to Google.  I would hang my hat on the fact that I didn’t have this symptom of a brain tumor, and I didn’t have that symptom.  Surely enough, before you know it I started feeling the other symptoms.

PCP

He took blood tests and abdominal ultrasound (I had been having a queasy stomach, bloating feeling, etc. which has now subsided).  All came back normal.  He also did a Lyme test which came back borderline/positive.  As the CDC directs, he then sent for the Western Blot test as a follow up.  I tested positive for Bands 41, 58 and 23, which is a negative/normal test.  Doc said I have no Lyme.

Neuro Visit 2

Dumped my old neuro and went to a second.  She did another neuro exam, tested for POTS (my blood pressure was a little low on standing, but I did not present as having the tachycardia component).  I told her my main fear was a tumor, she told me I do not have a tumor/MS/ALS (also on my list of worries- my fear knows no bounds).  She took blood tests at least, which of course were all normal.  With that she told me she does think I may have tension headaches, or some post viral something or another and hopes I get better.  

PCP

Feeling like I’m having a little more than tension headaches.  Symptoms getting worse if anything.  My PCP says at this point he would diagnose me with Fibromyalgia.  But I asked him since I am having all these normal tests shouldn’t I be feeling better? He said the doctors are missing something so go take my labs to UCLA to an academic doctor and tell him my doctors couldn’t figure it out.  So that is my next step, but I am still waiting to hear back about my first appointment.  

Meanwhile I’m enduring all of the following symptoms, most of which seem to rotate or appear cyclically:

Daily (Never lets up)

*Head- head pressure, head sensation, (sometimes tingling internally).  Primarily left side at the temple above my ear (I used the standard white Apple iPhone headphones to listen to the radio at work only in my left ear for around 1.5 years.  This is where some of my tumor fear comes from).  The pressure/sensation is randomly throughout the day, but is relieved when I lay on the side, or when I lift my eyebrows.  Sometimes I have bowling ball head where it feels really heavy.

*Hazy/Spaced Out/Lethargic/Dream-like feel/Woozy/Lightheaded- It feels like I’m high (I don’t do drugs).  Sometimes it honestly feels good.  Feels like I have taken a Benedryl.  I feel like I am delayed and not moving at the same pace as everything else.  It is terrifying.

*Vision- I am extremely nearsighted now, distant vision is blurry.  I just started wearing glasses 2 years ago, but I am now concerned that my vision issues are a part of all of this, and of course it is a symptom of a brain tumor.  I had my eyes checked twice.  All normal.

Often

*Nausea- nausea comes for a few days then leaves for a couple days.  It is unbearable.  A couple times I have taken Zofran, which just makes me tired and dizzy which are too similar to the original symptoms I’m trying to get rid of.  Or, relieved by eating, laying down or burping.

*Weakness-
-Legs- my legs are sometimes so weak it is difficult to walk.  Although generally I am able to walk, standing in one place for longer than 2 minutes is extremely painful.  My legs feel like they will give out.  
-Arms- I also have weakness in my arms from time to time but much less frequently.

*Soreness- sometimes I feel sore all over my body.  Back, everywhere.

*Ears- feel full like they need to pop.  Rarely I feel an inner ear pain.  Sometimes when I lay on either ear, it hurts.  Very sensitive to sound, whether it is a loud noise, or whether I start talking too loud.  I can’t even go to church because it’s too loud

*Fatigue- This was one of the more recently appearing symptoms. I actually take breaks at work to go lay in my car to get a reprieve.  When I get home from work, I sit or lay down.  I cannot stand long at all.

*Dry- I wake up with dry mouth.  Nose is also often so dry when I inhale it is bare in there.

Occasional

*Brain Fog- at times I feel like I am saying the wrong word, or confusing letters.  

*Tingling/Buzzing- sometimes I feel tingling in my feet, legs, arms/hands.  Sometimes it’s a full on buzz/vibration.

*Twitching- random twitches throughout body anywhere from eyelid to back.

*Jerking- neuro told me this is called myochonic jerking.  I feel like I am shaking internally.  Happens upon laying down or sitting down at rest.  

Tests done:

CT Scan head- normal
MRI brain- normal
Thyroid- normal
Hormone panel- normal
CBC- normal
ANA- normal, sedimentation- normal, B12- normal
Lyme- borderline positive; western blot- negative

This has been going on for 2 months, I have seen 8 doctors and I am so afraid and don’t know what to do next. If you have absolutely any thoughts or can relate it would mean the world to me as I'm desperate.  Thanks!
12 Responses
Avatar universal
Hi I am so sorry to hear what your going through.  I have many of the same symptoms from the blurry vision, severe head pressure, the sensation of confusing words, shaking internally, fatigue.  All that you mention I also have.  I had a CT scan that was normal and recently all blood work including autoimmune panels normal.  Kidney and metabolic function perfect.

Since my CT scan I am afraid to go back to the doctors because about 6 years ago I had another medical mystery that was strange and odd and I think he might suspect I am crazy or something.  The last issue resolved after 6 years but it was head related.  Not to go into it to bore you.    Anyhow I am in constant pain/discomfort and I almost feel as though I might stroke out or lose consciousness at times.  My ability to function is non exsistent but I still try and take care of the family the best I can.

I think what happens when your in problem solve mode is you get so involved in trying to diagnose yourself that a sense of panic and anxiety overcome you and it exasperates the existing symptoms even more.  That is what might be happening to us as we are so concerned this is a life threatening issue.

One thing I have found that seems like a possibility is intracranial pressure.  It can happen idiopathic with no existing brain problems, or it can be part of something else.  Since your test were normal no worry of tumors etc.  But it can affect the vision.  I feel like my vision is terrible.  I can see but my acuity is very poor with my glasses.  I no longer can wear contacts as it makes the pressure 100x's worse.  I can feel the pressure behind the eyeballs big time and the contacts seem to make that way worse.

I hope we find our answers.  I am afraid I might just fall over dead out of the blue, I hope not but I just don't know what else to do at this point or who to see.  I am seeing an eye doctor next month to check my eyes and I am just praying at the moment it will pass.

Maybe it is some strange post viral syndrome?  Have you looked into probiotics?   I heard many mention head pressure relief from these.
Avatar universal
Thank you so much for taking the time to read my post.  And most importantly, I am so sorry you can relate to my symptoms, although admittedly it gives me a bit of comfort that I am not the only one.  I'm glad your other issue resolved, and I'm sure this one will too. I can't imagine taking care of a family right now, so hats off to you!

I agree with everything you said.  There is definitely an anxiety component.  I noticed the internal shaking is worse when I am full on fearing ultimate doom.  But I have mostly gotten past thinking I will drop dead (since my symptoms have been going on for 2 months and I'm still ticking).  It's the progressive deadly disease I fear.

I have seen a host of doctors, some have looked at me funny, others have just admitted they do not know what is wrong with me.  Um...scary!  This leads to me thinking I have to self diagnose like you mentioned.  It's a terrible cycle.

I looked into intracranial pressure.  One neurologist offered me pills I could take every day in case it was an intracranial pressure issue.  I never asked if they were probiotics or not, but I will on my next visit.  She just didn't seem sure enough, so I am seeing a few other doctors before I go back for the daily medication.

I saw a homeopath recently who gave me liquid folic acid.  My real doctor said it couldn't hurt me so I gave it a try.  I have been feeling less fatigued/lightheaded lately but I'm not sure if I can attribute it to the folic acid.

My next steps are to see an endocrinologist in a couple weeks.  I've heard hormones can do wild things to your body and throw it completely out of whack.  My GP has done some hormone/thyroid panels, but I've been told I should have a specialist do a thorough workup. My GP also referred me to a teaching university, so I am seeing another neurologist there.  My nerves are definitely out of whack so it often feels neurological.

Getting your eyes check is a great next step.  Please keep my updated on any leads or answers you find.  It would be a great help to me.



1 Comments
Oh my.. so crazy-I'm 30 and can relate to literally everything you are describing. It's like I'm reading something I wrote, to someone else. I notice this post is older, but, if this message finds you.. please email me! I would love to talk to someone who knows what I'm going through as well...  sunshine.***@****
Avatar universal
Three points come to mind:

1. Forget homeopathy. You have a serious condition and homeopathy never cured anyone of anything significant.

2. Remember when it comes to any scans eg MRI the secret is not doing them but in having a smart guy or gal interpreting what is on the scan. A smart neuro does NOT need the report that comes with the scan. He should be able to make up his own mind.

3. You mention pain in legs. Have you had a scan of the lumbar spine? Leg pain comes from L3/L4 in the spine
Avatar universal
As someone who had a pituitary tumour I sense you should have a MRI of the pituitary given common indicators are:

headaches (most days)
nausea
deteriorating vision
possible dizziness
7486852 tn?1410352184
I also have a lot of similar symptoms I had a list front and back of symptoms. my doctor sent me for a bunch of blood tests, and checked for certain infections and when my tests came back normal he referred me to a neurologist that wouldn't see me because of my insurance I am now waiting on a referral to a neuro that actually takes my insurance. I'm am also afraid people will think that I am crazy but I know I can't possibly be imaging these symptoms also people can see some of these issues with their own eyes anything someone else can see is a sign and if were having signs as well as symptoms it is not just in our heads. I was concerned with fibromyalgia. and chronic fatigue syndrome but that may be because I have Endometriosis also and those problems come hand in hand in some cases. So I guess I should know something when I can see my neurologist. If you ever need to talk I am here for you. I know how lonely I feel and it has to feel better to have someone to relate to.
7486852 tn?1410352184
Imagining** not imaging lol
Avatar universal
Hi jessie,

Thank you for the response.  I agree, it is extremely lonely but talking to each other will hopefully help us!

Going to a neurologist who takes your insurance sounds like a great step in the right direction.  My doctors have told me fibromyalgia is a real possibility.  I think we just have to be diligent and keep searching for answers.  Like you said this is not in our heads.

What are some of your most problematic symptoms?
7486852 tn?1410352184
I've been having increasing problems with headaches, pressure, pulsating sound and sensation, blurry/double vision, memory loss, long& short term , having trouble remembering things I've learned in the past and remembering new things I learn. I recently started getting sharp shooting pains just on the left side, one day I couldn't feel the left side of my face. my head hurts to touch. The newest thing that happened I've never experienced life I started hearing a crackling sound just on the left side up in my head went on for around 30 seconds while i kept asking my fiance don't you hear that too, i started looking behind me to the left.. he said he didn't hear anything multiple times.. I also have a swollen something above my collarbone sometimes its bigger than others for months and it only hurts occasionally , & the other side is fine. I don't know if this is related but i also have numbness and pins and needles feelings in hands arms legs and feet like they are always falling asleep and Ive been having muscle spasms/twitches occasionally in random places in my body. Also again may not all be related..I have had nausea and fatigue daily might be from endometriosis i don't know but  occasionally feel sharp pain in center of chest and sometimes feel like I'm rocking but I'm not doing it, maybe pulse is just that forceful.. i don't know. I occasionally feel dizzy and lightheaded like fall over especially when standing up. I have pain and stiffness everywhere and weakness, I have been getting confused lately and extremely. irritated even with people who normally don't irritate me. I feel like I want to be a little less social but maybe its just from being extremely tired even an hour after waking up from sleeping even 8 to 10 hours at night. I feel no where like myself.
7486852 tn?1410352184
Have you experienced seeing or hearing things no one else does? I have been and its scary. My nausea was so bad yesterday I vomited when normally its just bad nausea everyday this was extreme nausea I couldn't resist vomiting:/
Avatar universal
Wow, we definitely have a lot of the same symptoms.   I haven't been hearing/seeing things.  I wonder if you could be experiencing tinnitus?  

How is your blurry vision?  Mine is blurred at a distance which my eye doctor told me is normal (I just am nearsighted) but it hasn't stopped my worrying.

Sorry your nausea has caused you to vomit.  Nausea is my most debilitating issue.  My nausea is in my throat instead of my stomach, and has come back, but I've been drinking ginger ale and it's gotten better.  Also try ginger gum/ginger tea.

Did your doctor check your thyroid/hormones?  Thyroid issues can cause a range of symptoms.  I had mine checked by my GP, but all was normal.  I am following up with a specialist (endocrinologis) on this.

I have had tiny improvement but I noticed my symptoms seem to rotate.  I never have them all at once.  For example, my legs were weak/sore for 14 days, then I regained complete strength.  My nausea also comes and goes.  However I have something going on every single day.

I bet you are pretty worked up by all the changes with your body as I am too.  This has caused my anxiety to shoot through the roof and I have not been engaging with any of my friends.  I think that's completely understandable.

You will feel much better once you get in to the neurologist.  My appointment is about 2 weeks away
Avatar universal
A related discussion, Vertigo Neuritis was started.
Avatar universal
You are describing my symptoms from 15 years ago to a tee. Doctor upon Doctor, test upon test all normal. Finally had a bad episode that convinced an er doctor to do an MRI of the neck for a rare brain stem stroke. They found a congenital malformation of the brain stem. Ask a neuro about a neck MRI for a condition called Chiari Malformation. Few doctors know about this malformation that affects 1 in 1000 people. Mine was a bad one ( odds of about 1 in 2.6 million). There is a surgical decompression that in my case eliminated 100% of symptoms. Best wishes.
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