Somebody please help, unknown terrifying brain (or other) condition

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New Member

Date Joined Nov 2015
Total Posts : 2
   Posted 11/21/2015 6:40 AM (GMT -6)   
Hello there,

My name is Tori. I am 19 years old. When I was around 8 years old, I would get headaches every now and then. They seemed pretty normal at first, but over time they have gotten worse. The first one that I remember that was very bad was around 8 or 9. I remember I had what a person would consider a "migraine". It was a very excruciating pain in my right temple. It was behind my right eye. It did not move. I don't remember if this pain was particularly "sharp", but I remember after about twenty minutes of dealing with this pain, I began to become nauseated. I was with my friend, so she told me that I was probably feeling some sort of nausea because the pain was so bad. She told me it was a natural reaction to extreme pain in the body. Short after, I began to throw up. Similar episodes had happened frequently. I would miss a lot of school. I tried to explain to my mother that I was in a lot of pain, but that is hard to explain as a child. Nothing else was happening at the time, though. The only problem was the headaches.

I went to our family doctor and he told me to begin a journal on these headaches. I was a child. I was very forgetful. My journals were not kept very well, but the headaches were so significant I could remember them very clearly. After time, I was diagnosed with cluster headaches. This was around 10 years old. This was because as time progressed, my eye would tear up and my eyelid would twitch/droop a little. Also, this headache had never moved from that spot. Cluster headaches are known to be on this side, apparently, and this was my final diagnosis. I was very satisfied with it, as I thought I had finally figured out what was wrong with me. My doctor began looking for medications that he could use as preventatives. We tried a beta-blocker, which had no effect whatsoever. He weened me off of it soon after, but we had to switch doctors. This was a hassle because I had to go back through my medical history with this new doctor. This happened over and over. The problem with this is each and every doctor wanted to rule out sinus problems, tension problems, migraines, etc. before diagnosing anything else. They would not believe me when I told them that I had went through this a million times. They wanted to see for themselves. I understand this because being thorough is extremely important, but it honestly gets depressing hearing this over and over. Nobody believed how bad this pain honestly was.

In eighth grade, I experienced the end-all headache that forced my doctors to take some sort of notice. I came home from school. On the bus ride home, I felt somewhat lousy. I felt a bit of pressure in my temple, but I was used to this as my temple pretty much always hurt. I was watching TV at home. My mother was in the office next to me working on her computer. Out of nowhere, I am guessing I had what they call a "thunderclap headache". It was an excruciating, stabbing pain worse than I had ever felt in my right temple. Again, this pain has never moved. I started screaming and crying because I could not bring myself to do anything but this. My mom grabbed me and took me to the ER immediately. They admitted me to the back almost immediately and had me take a CT scan. They found no abnormalities. Again, they told me I had migraines. I have never seen a person react to migraines the way I react to these headaches.

Now, fast forward to the present.
Looking throughout the years, there has been an obvious decline in my health. These headaches, over time, have gotten progressively worse. It's extremely hard to wake up after I finally fall asleep at night. Not ocnly "hard to wake up", but impossible. I don't hear alarms or realize that anyone is even attempting to wake me up. Once I finally do wake up, it feels as though I had not slept for weeks. Honestly. I have horrible trouble falling asleep at night. Not to mention when I wake up, it’s normally because I have a headache. I have felt nauseated for years and years. I thought it was my birth control when I was younger, but it never went away. It still happens to this day. During these excruciating headaches, every now and then I’ll throw up. Sometimes barely any, sometimes violently. My joints ache and my body just hurts every single day. I honestly don’t remember the last time I felt remotely healthy.

I decided to go to the neurologist because all of this began to scare me. What topped it off, though, was these little “spells” I got. My vision would slur and blur out. My arms would tremble and shake. I would get extremely hot and uncomfortable. I just generally felt “drunk”, for lack of a better word. Everything just felt sluggish for about 10 minutes, but then it went away as if nothing ever happened. This happened every single night for a while. It honestly scared me so much that I went straight to urgent care for a referral to a neurologist. Around this time, I also noticed that my memory was a little weird. It was a little hard to remember words I’ve known throughout my entire life. I couldn’t remember conversations I had even five minutes prior. The neurologist did a work-up on me. He said that I showed signs of weakness in the right side of my body. My balance was completely off on my right leg, but not on my left. I would be slow to answer simple things, for example, he would point to my jaw and ask me to name it and it would take me a second. He scheduled an EEG and an MRI. I could not afford the MRI, so I only took the EEG. It was normal. For personal reasons, I took my medical records from the neurologist’s office to my own doctor.

During the visit with my doctor, he was joking with me the entire time pretty much. I told him how I always felt tired, how much my joints and muscles constantly hurt, how I was forming dark circles under my eyes, how I still had these headaches in my right temple, how I would hear ringing in my right ear, how when someone talks to me into my right ear, I can hear them, but it’s hard to understand them, how I lost weight, how I always feel nauseated and just generally sick, how my muscles just hurt, how I keep getting sick over and over and over, and how I want everything to stop.

Just to try to reassure me that I was going to be okay, he smiles and says, “Look. Everything will be fine. Watch. Do you have these headaches when you wake up, or do they wake you up?” I said yes. He said, “Do you throw up from the headaches, or do you just feel nauseated?” I said that I throw up.

I will never get that immediate change in expression out of my head. This is a family friend. He loves us. He was only trying to reassure me, I knew he meant no harm, but his reassurance backfired. He looked at the ground. “Dang it.”
I asked him what he was talking about. He explained how I have many of the warning signs of a serious neurological issue and I need to go take an MRI.

If anybody will help me, then please help me. I am terrified right now. I don’t know what this is. It’s been mentioned to me that a tumor needs to be looked for multiple times over the past couple of years, but I thought they were just jumping to conclusions to rule it out. I never thought that I actually showed true signs of it.

What are your thoughts and opinions everyone? What do you think? I just don’t want to be miserable anymore.

Forum Moderator

Date Joined Apr 2012
Total Posts : 7515
   Posted 11/22/2015 10:38 AM (GMT -6)   
I dont know what the doc could have been talking about. You have already had all the tests they showed negative.

I have pretty much the same pain as you, see my diagnosis.

I am on a combo of meds for the pain.

I have been tested 4 times for RA, MS, Fibro, 8 CT scans, 5 MRIs and still all negative.

I wish you peace and strength
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

New Member

Date Joined Nov 2015
Total Posts : 2
   Posted 11/23/2015 1:56 AM (GMT -6)   
I've never had an MRI. I've had one CT scan in eighth grade and a bunch of bloodwork done.

Thank you. I'll look through the diagnosis.

Veteran Member

Date Joined Jan 2015
Total Posts : 1154
   Posted 11/24/2015 7:49 AM (GMT -6)   
I'm not sure how I ended up on this section of the forum, but I'm glad I did, as I had lots of stuff like this, the sicker I got. No headaches, but pretty much all of the other stuff.

I have chronic Lyme disease.

Though, its progression can be rather fast for some, it's not unheard of for it to be a slow, gradual thing. I didn't quite realize something was wrong until a couple years after I'd been infected.

It started with the subtle mental, cognitive issues, slowly snowballing over the years, with the physical ones coming later on.

I remember some of the feelings you've mentioned. Again, no headaches though. But, I have heard from some Lymies suffering from them, constant ones as well.

So, while it could be something more immediate, or "serious," at least by the mainstream definition, than Lyme disease, I'd definitely try to rule it out.

Do you or your parents ever remember you being bitten? Did you spend lots of time outdoors as a kid? Do you live on the east coast? You can be infected just about anywhere, these days, but the east has got it the worst.

Though, if that is a path you'd be willing to take, unless you do happen to live on the east coast, or have a VERY open-minded doctor that you can confide in, I'd recommended that you try to find a doctor literate in Lyme (LLMD) via the ILADS referral system, as most mainstream physicians are not yet very informed when it comes to tickborne illnesses.

Some are downright ridiculous. They'll have obviously sick people, with laundry lists of symptoms, even those who remember being bitten, believe that they're crazy, that it's all in their heads. So, yeah, if you take these concerns to a "normal" doctor, you probably won't get very far.

Anyway, I've said enough. I don't mean to hijack your post, I just stumbled upon it, and thought I'd shed light on the possibility. Honestly, like I said, I could have swore I was in the Lyme section.

Oh well.

Whatever it is, I hope you can get it figured out, somehow. Being sick sucks. Life's just not life, you know? You know. I feel for you.

Post Edited (NotQuiteAntonio) : 11/24/2015 6:00:40 AM (GMT-7)

Alicia 101
New Member

Date Joined Dec 2015
Total Posts : 2
   Posted 12/9/2015 12:20 AM (GMT -6)   
I also have similar symptoms but mostly that happens because of my hair. When I tie my hair for a long time, the constant pull builds up and eventually starts the headache after a couple of days. The medicines doesn't work for that in my case! The only thing that works is the massage of the head with the pain balm! On the day that you actually have the headache, try to let your hair loose. Use your fingers and try to press on the head and check at the base of the hair for any spots that might feel as if you bumped into something hard. If you are lucky you might be able to identify the spots that would seem tender to touch! There could be many such spots because the hair got pulled in different directions! Now just lie down and massage those tender place with the pain balm and go to sleep. The next day you should feel much better. The massage could take a long time but it will slowly make you go to sleep! A hair wash on the next day can help set the hair different from the previous one and thus offers relaxation to the inflamed hair base! Sometimes you have to do this one or two more days but eventually the pain will go away! All you need to do is to take care to brush your hair daily and keep it free from tangles and constant tying. If you will keep your hair nicely, then you will not get any headaches!

I am thinking that you might be tying you hair most of the time! rolleyes

Alicia 101
New Member

Date Joined Dec 2015
Total Posts : 2
   Posted 12/12/2015 12:11 AM (GMT -6)   
Checkout Calamare treatment! Don't know if it can help ???

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Veteran Member

Date Joined Nov 2015
Total Posts : 4980
   Posted 12/17/2015 8:14 PM (GMT -6)   
Use to get hair tension headaches but much later found out it was scalp hurts to the touch.another infectious cause could be c.pnuemonia which causes ms .intercellular multi system.. can cause quite a bit...if you ever had it and didnt treat its still in our bodies. Both together are a special kind of hell...they just told my sis in law that she throws up because of migraines after already removing gall bladder...dr are just practicing..btw mri showed some specifics foci t1 t2 flair ,nuero said it was normal for glad i didnt believe it...

Veteran Member

Date Joined Nov 2015
Total Posts : 4980
   Posted 12/17/2015 8:23 PM (GMT -6)   
Tori lyme testing is flawed..they said my first two was negative then false positive wasnt till i forced it out with high dose c that i saw it in my blood under a microscope. not not take no for answer ...22 doctors later can get it from mosquitos, spiders ,mites and good ol ticks
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