The headache which won't go away

[Teddybear92]

I posted this on another forum but didn't want to type up the symptoms again.

I have had a throbbing headache 24/7 for nearly a month now. The throbbing is all over. It burns and stings as well. No pain killer helps. I had this last year for two months but it suddenly stopped and returned last month,​

A pressure feeling in my head like my head is like putty. You know when you squeeze it, it goes out the sides? That's what it feels like like it all of a sudden gets strong in a certain spot.
Feeling the pressure "move" when I move. Which I can literally feel as if I have water in my head. I have taken doxycycline in the past which seems to help a little. Almost like you tipped a ball fall of water on its side.
Stinging pain over my cheeks.
Tiredness earlier than usual. Literally been tired at 7-8oclock
Depression. It lasted several days. It was unusual.
OCD. Was driving me insane. Still kind of there but just stopped in intensity.
Vivid dreams. (Nightmares)
Random tinnitus
Tingling arms, fingers
Stomach pain
Sneezing/sniffling could be weather related
Nausea
The pounding in my head is worse if I move or exercise
"Insect like feeling" over my skin. I've had this for YEARS and have no clue about it..just worth mentioning. Sometimes it feels exactly like a ant or fly and I an distinguish what insect it is. I do get bitten a lot however. Sometimes the feeling drives me crazy as I'm so itchy. It has been bothering me for days.
Easily bruised.
Very very sensitive to light touch I feel the "ghost" imprint of it ages later as if the person had still touched me.
Very sensitive to cold temperatures than what I should be for a temperature shown for no apparent reason. I get chilblains as well. Like today it's 18 degrees and I'm wearing just a nightie, the day I has this happen it was 16degrees and I needed more than one layer. I feel thecold more than other people I think
Stomach upset
Light "poos"
Coughing
Shaking

Now the most scary thing....
A weird "dizzy" feeling without actually being like dizziness.. almost like I go completely spaced out for a second? I'm aware but it's a really scary sensation and hurts when it does so. This is my most concerning symptom. I feel like I'm losing touch of reality and about to black out. I feel it more if I'm standing but doesn't seem related to sudden movement as it happens any time. I feel like all my brain functions "die". I'm sorry if it sounds like nonsense it's hard to describe this sensation. I have had quick "blackouts" before and feeling like the blackness was "caving in around my head". I have no idea how to describe these sensations. I even feel as if half my brain is dead. I'll have this weird sensation over half my head lasting briefly and I feel like I cant "use that side".
Once again I know it sounds like nonsense.

Trouble speaking, finding words at times. Memory terrible.
Tense-like feeling and pain down my arms. Feels like nerves. I've felt it in my legs too.
A few times last year and thus year I had a random terrible pain shoot up my back. I've haven't had it since it was almost as if I had shivers back going up my back and like an electric shock mixed with a trapped nerve? I never had it again. I admit my posture is terrible however.
Sudden hand or arm movements like a finger going up or my arm suddenly moving.
Chest throbbing in time to head
Sharp chest pain
PVC's (could be stress or anxiety think it is)
Brain fog? (Dream like state walking at times)

Family history:
My auntie had epileptic fits, my mum has shaking, my other auntie has something like it and my father's side his sister has some mental condition where mum says she is "crazy" (not depression, she will fly off the handle and things like that. Never met her, I don't know)

I do have depression and anxiety which my doctor thinks is all what this is. But I'm very concerned about the dizzy like feeling where I'm losing touch of the world. I feel the blacking out when I walk and can't reason much at times. Like in the supermarket I lost sensation in my brain and felt as if I was a walking zombie. I had no idea what something was. Not like a brain fog, it was literally like I wasn't there at all..... I can't explain it but I felt like my brain function died.
All my life I haven't felt "right" in my head, weird thinking patterns, weird behavior, learning difficulties, not being able to click with people.

I've had a non contrast ct and a spinal tap but they were good. Also had many blood tests over the past year

Does this sound like CFS/MS or epilepsy? (no fits ever though)I have thought about getting an EEG but he thinks it's just tension headaches and anxiety. People think I'm a hyperchondriac and its "all in my head" (well it is though lol

) and kind of make it out as these symptoms aren't real. I admit I have hyperchndria

Ideas? This can't be simply anxiety or depression.
------

I wrote that on another forum and since then I feel like I'm getting worse. Random times in the morning and night my heart pounds really hard. The hesrt pounding ive had before but it's came back suddenly. Doesn't seem to do it during the day. Today/last night I was in a weird dream state where I was aware I was dreaming and was trying to "escape" the dream and upon my eyes but the drowsiness was so powerful. I've had this before but it was so bad last night. It's so hard to explain but I thought what I was dreaming was the "reality". I was really disstressed even though the dream wasn't distressing I just couldn't "wake up" from it and my Head was heavy. I was in a weird mania sleep state I can't explain any further. It is a horrible thing I don't think there is a name for it. It's just insane...
I woke up and it was very difficult to finally keep my eyes open. I'm soooooooo tired. My head is so heavy, feel dizzy, I feel nauseated, I can't get any more sleep, I go to bed early, I feel so weak and tired all day ALL DAY. The pain in my head has not left me since March when it started it's been there 24/7 WITHOUT break. It's just so heavy and throbs, aches, burns and goes into my neck, arms and random places. I feel so out of sorts. I feel so tired I didn't even want to type this I just flopped on bed. But have enough energy now.
I have nerve pain as well over my body and just a general weakness.
Not too long ago in Feb/March sometime I went to hospital for severe chest pain. Oddly the stomach problems I was having then and the sort of pain I was feeling passed. They think I have gastritis so I'm awaiting a gastroscopy. I still have suspected stomach problems but nothing compared to what I was suffering then. Why are my symtpoms changing so much?

I'm sorry for typing so much

 

[Teddybear92]

I have considered supplements such as vitamin b complex. I don't drink milk at all anymore. Except a daily yoghurt and odd time cheese. At night I have been taking lorazepam to help me sleep since I have terrible insomnia. I didn't take it last night because I don't want to rely on it. I had trouble sleeping then that attack happened last night/early this morning.

 

[cmt12]

This is ME/CFS when it is fully symptomatic.

 

[Teddybear92]

You think I may have it? I understand depression/anxiety can cause many symptoms like this...this just seems like a little more than that. I do suffer anxiety/depression but I haven't felt convinced my health issues are entirely due to that. I think some of my symptoms are actually CAUSING depression/anxiety instead! Felt that way for a long time. But doctors won't take that seriously. My doctor certainly won't. As long as you have anxiety I don't think doctors will ever take a single symptom seriously! Just told to wait councelling...

 

[taniaaust1]

unfortunately it isnt uncommon for me/cfs symptoms to be changing a lot.

"A weird "dizzy" feeling without actually being like dizziness.. almost like I go completely spaced out for a second? I'm aware but it's a really scary sensation and hurts when it does so. This is my most concerning symptom. I feel like I'm losing touch of reality and about to black out. I feel it more if I'm standing"

I strongly suggest getting a tilt table test done as POTS can make one feel like that due to the lack of blood to the brain at times and you could actually end up blacking out and on the floor. POTS also can cause anxiety

 

[Amaya2014]

Hi @Teddybear92 Im sorry you're going through such a difficult time. Many of your descriptions reminded me of how I felt when I first became ill. Like a robot, it was like I had somehow short-circuited and everything was going berserk. I questioned every moment would be my last.

Not sure how long you've been having these symptoms, how old you are, or your medical background. If this is all new to you please seek medical care as soon as possible. I hope you don't have CFS and an easier to treat illness is the culprit.

Sending prayers and hugs your way for answers and a more stable state of health

 

[Teddybear92]

Thanks for your replies. I'm concerned about the symptoms I have. I was drinking tea before and my brain just "died" I was holding the cup near my lips but couldn't figure out how to move the cup to my lips. It felt pressure over the part of my head which controls that action...if that makes sense? I feel similar things like my whole brain just turns to nothing. Heavy pressure. Can't think, do random spur of the moment things. I suddenly did a dance in the bathroom before. Wondering "WHAT THE HECK!" to myself! Am I just MENTAL??
I know that can be stroke/aneurysm related. I had a non contrast brain ct last month (17march)
What could cause these things?

 

[JAH]

This absolutely sounds like epilepsy. I was just in an epilepsy clinic and had a 48 hour EEG. A patient next to me had a very similar symptom- the spaced out feeling, loss of time, difficulty speaking. You have a ton of symptoms, but they all seem neurologic. If you can get a 48 hour EEG, you could see if it is seizures, as long as you have an episode while you're there. The burning and tingling could be pinched nerves, you might benefit from an EMG.

Not that I really know anything, besides my own case, but you're not crazy, you're sick and I hope you get the treatment you need and deserve.

JAH

 

[mgk]

It sounds like your doctor isn't taking your concerns seriously. Give them one more chance by asking to be referred to a rheumatologist. If they refuse, you need to find another doctor. I know it's frustrating, especially when you don't feel so well, but it's very important.

The rheumatologist will probably test you for a lot of things, but make sure to ask about Fibromyalgia in particular. A lot of these chronic illnesses are kind of fuzzy and have overlapping symptoms, but if you can discover that you fall more into one category than another you'll have better success in finding some symptom relief.

 

[Teddybear92]

This absolutely sounds like epilepsy. I was just in an epilepsy clinic and had a 48 hour EEG. A patient next to me had a very similar symptom- the spaced out feeling, loss of time, difficulty speaking. You have a ton of symptoms, but they all seem neurologic. If you can get a 48 hour EEG, you could see if it is seizures, as long as you have an episode while you're there. The burning and tingling could be pinched nerves, you might benefit from an EMG.

Not that I really know anything, besides my own case, but you're not crazy, you're sick and I hope you get the treatment you need and deserve.

JAH

I had an EEG when I was 12 which was good. Could epilepsy show up later in life?
I have considered an EEG actually. I'll have to discuss it with my doctor.
I have had what I call "split second blackouts" and on Google I have found people who have had similar things.

 

[Teddybear92]

It sounds like your doctor isn't taking your concerns seriously. Give them one more chance by asking to be referred to a rheumatologist. If they refuse, you need to find another doctor. I know it's frustrating, especially when you don't feel so well, but it's very important.

The rheumatologist will probably test you for a lot of things, but make sure to ask about Fibromyalgia in particular. A lot of these chronic illnesses are kind of fuzzy and have overlapping symptoms, but if you can discover that you fall more into one category than another you'll have better success in finding some symptom relief.

My doctor is terrible to talk to, I really want to switch doctors but my anxiety prevents me from going elsewhere. My doctor doesn't exactly treat me with respect...

 

[Teddybear92]

To make matters worse I have been getting sharp chest paint out to my back so I've been taking mylanta. I just had some dinner just now and kept feeling like the food was getting stuck in my chest (not throat). It was awful!! It felt like it was really struggling to go down. Water seemed to help but now I've got a sweat. Anyone have anything like this?? Right before I had dinner I was feeling incredibly mentally "fuzzy" as if I was in a dream. It didn't last long though. Think some of it's GERD but I haven't had trouble with my stomach in quite a while. Last problems were back in March. I went to hospital for severe chest pain they think it's GERD and gastritis.

 

[Teddybear92]

I'm suspicious about my spinal tap I did get a red blood cell in my results and my back seems to be more irritated since that day. I did move during the test becsuse of the pain...itwas so hard to keep still!! I've had pain on the spot where they did the test and some back pain from my neck and just weird pain...
Sorry about all the posts....

 

[JAH]

I had an EEG when I was 12 which was good. Could epilepsy show up later in life?
I have considered an EEG actually. I'll have to discuss it with my doctor.
I have had what I call "split second blackouts" and on Google I have found people who have had similar things.

I don't know enough about epilepsy to have an opinion about whether it can show up later in life, but if you have an EEG , you have to have an episode, like one of the "blackouts" during the test to know if it's a seizure.

Good luck and let us know if your tests show anything, JAH

 

[Gingergrrl]

This is not in reply to this thread vs. a general statement that you can have adult onset of epilepsy. My best friend who does not have ME/CFS developed epilepsy in her 30's with no prior history as a child. It took quite a while for doctors to diagnose and figure out what was going on.

 

[Teddybear92]

Just a general health update. Woke up feeling sick, felt like vomiting. Had a better sleep. Chest, stomach and throat throbbing and tight today. Having so much palpitations and PVCS. Seems my GERD or gastritis has returned again. Sharp aching chest pain. No idea why this has flared again. Should've expected something my heart has been bothering me for days..
Nerves going across my head making me dizzy, spaced out, Fluid near edges of eyes and ears feeling, burning pain over back and across my body suddenly lasting seconds (think it's probably all coming from my neck as moving my head suddenly can make me dizzy and cause pain...) this pain is terrible. Goes all over me!
Back of neck pain, back pain..shaking..
I feel stronger today I don't feel as weak as yesterday. Feel like I have more energy but I cant think of why except the better sleep maybe?
Sick of waiting for my gastroscopy...

 

[Teddybear92]

Ok I will have to bring up the EEG next time. Seems like perhaps simple partial seizures since I don't actually have a fit and I stay conscious

 

[prioris]

I agree that is ME/CFIDS symptoms.I remember needing to wear a winter coat during a summer heat wave because i was so cold. Your going through a terrible time.

First you need to calm down internal inflammation. I would suggest using a boat load of different antioxidants

Second, vivid nightmares and headaches would suggest that your being hit by glutamate toxicity

Third, you look at your diet and try to eat healthy

Please look at the first post of this link

http://forums.phoenixrising.me/inde...migraine-atypical-trigeminal-neuralgia.43667/

 

[barbc56]

My dad's wife has remitting/relasping MS. She periodically has a 24/7 EEG. I think she wears this for 4 or 5 days. It gives a better picture as to what is going on. I would certainly bring this up to your doctor and even a second opinion if needed.

I've told this story before, so bear with me. I had a student, aged 14, who would soil his pants, sometimes twice a day. So many theories such as he was doing it for control or for attention and reinforced by the fact he would deny this had happened when it obviously had. His intellect was impared as well as his social interactions. Structural anatomy was fine, EEG and other tests were normal. After four years of this a neurologist did the longer EEG and it turned out he was having mini seizures throughout the day. They were not noticiable. Im not sure if the seizures were the same as petite mal seizures but some of the seizures were causing him to defecate.

When I think of the humiliation, the teasing and effect all this on his self esteen, it makes me want to cry. Even the other teachers and foster parents didn't want to be around him. It's kind of understanding that this would happen but the vitriol directed towards him by these adults was not.

There may be neurologist who specialize in your symptoms.

Good luck and keep us posted.

 

[Teddybear92]

Hi guys I've been struggling a lot still. Having a range of horrible things happening to me. Been considering depression and emotional stress. My home life is terrible. I've been under emotional abuse the past few days and have developed this awful, deep emotional pain which won't go away since yesterday. It's a deep pain right in my chest which I know isn't my stomach because I've had this before. The only cure for this pain is for this person to treat me right again. Once they treated me right I was cured. But this person has narcissist personality disorder and doesn't love me and the love is false. This person is quite emotionally abusive and I don't know how to escape the situation. On top of that I have been having this awful head drowsiness every morning where I can't even open my eyes, palpitations galore, stomach issues and chest pain which isn't emotional. And then I think of that little patch of mold at the corner of my bedroom and think if that is affecting me too...