Head problems

[Sarahloudobby]

Hi all
When I first developed ME it began with extremely bad headaches to the point where I ended up having a private head MRI as I was convinced it was something in my brain, the headaches did eventually subside but I have had many other symptoms on and off in severity since then (2002). However lately I have had so much sinus pressure and headaches. I take pain relief almost every day, I’m often dizzy or clumsy and just so tired. I can’t bare the headaches coming back again like they were at the beginning. Ok sitting here now and I don’t feel like I’m in my own head it’s liked I’m slightly removed from myself and watching everything from a distance. I hope this makes sense to someone out there.
Sarah

 

[fredam7]

Get an mra of the vessels in your head. I have exactly the same thing and no history of this before .
Also, you could have a massive sinus infection as well. I did and do but after oral steroids , it's 40% better

I'm not sure my symptoms have anything to do with CFS , I'm still on the fence with my diagnosis of that , I think other things are going on. But what you described with the headaches and what I call feeling drugged , all of it , is exactly what I have , exactly . Dr's say it is neurological . It's horrible , I know . Stress makes it much worse and I'm stressed 24/7

I've been wondering a lot about how many people here are around people that are causing them acute stress but have no choice or may not fully be aware of it .

I feel that weird , spaced out thing might be mental in my case , or I wish it was but I'm afraid it's neurological becsyde I have bad tinnitus too .

I wish I had some answers but try to get an mra, I'm doing that after different dr's ordered it, I like to be sure . And I can't keep fluid so I'm dehydrated all the time , not sure if you are .

But you really captured this head pain and crazy feeling and I don't know what it is!

 

[fredam7]

Wanted to add, the vertigo is worsening for me . Do you have electric shocks in your face ? Do you have small fiber neuropathy?

Have you seen a very good neurologist ?

 

[Sarahloudobby]

@fredam7 thank you. I have had previous sinus infections and used strong sinus steroid sprays which seemed to help. I definitely suffer with stress I get stressed and anxious very easily.

 

[Sarahloudobby]

Wanted to add, the vertigo is worsening for me . Do you have electric shocks in your face ? Do you have small fiber neuropathy?

Have you seen a very good neurologist ?

I do get vertigo sometimes but it comes and goes I wouldn’t say it’s worse. Not really had electric shocks. I do get the odd panic attack though

 

[fredam7]

@fredam7 thank you. I have had previous sinus infections and used strong sinus steroid sprays which seemed to help. I definitely suffer with stress I get stressed and anxious very easily.

Those sprays are helpful for some people. I had a bad one for 11 months and counting , my voice is hoarse because of it. Sprays didn't help so I took oral steroids , it gets complicated but it helped that issue some but I think it's still bad

But there is also occipital neuralgia which that's there , my eyes glitch and have the stiff neck and head pain is so bad .

Yeah, the stress can be very bad. I didn't know I had bad anxiety and stress because I was raised that way but it's to such an extreme level that xanax doesn't help and every sound is terrifying and I wasn't an easily scared person , a thrill seeker actually .

I don't know , it's really weird to me how this fear and weird symptoms coincide . I think chronic pain and illness takes a massive toll one's mental health and then the bad mental health further damages our physical heakrh

But that weird feeling of not being there I sometimes wonder if it's some weird coping mechanism so escape pain . I have severe pain issues that are intractable, no medication helps . So I wonder if my mind split in 2 and I'm crazy now becUse I'm stressed all the time and if an outside stressor comes up , which it doesn't frequently , I get exactly what you're describing ,

It got worse and worse and now I'm just like that all the time . My living situation is bad and someone bad is around and so I'm very uncomfortable. Can you get out of these episodes ?

I can't get out , im trapped in them . I think it's gi related as well. At this point , it's so confusing .

I can't believe some people had to go crazy to stay alive , I feel that happened to me after years of agony and I have no emotions but terror and anxiety and I was very very helpful and loved so many beings and things before.

I feel trauma plays a large role . Not saying people are not physically ill, but trauma plays a big role and keeps playing it . I sometimes wonder if I was well and opened a good place up and moved some very ill people there , away from maybe people perpetuating their illness, if they could get better

I've seen people who have mothers who live for the adult kid's illness , some weird stuff . Maybe the adult ill person can't get better because the source of the trauma is over them !

I feel trauma and the destruction of the immune and nervous system are linked rather closely and that's my personal opinion of course . How could I go from sky diving and loud concerts all my life to a craak of the floor sending terror through me? Trapped in trauma from physical pain and trauma , leads to more trauma and decomprnsation

Plus when you're very ill, a lot more trauma comes your way , the horror of dr's alone . Losing years of your life . Struggling with death with dignity options everyday . It's a lot

So I wonder if our head issues are neurological and psychological which is really one and the same . I guess I really have finally gone crazy

The vertigo does come and go , mine is just escalating . I sat in a chair and thought the legs broke and held the seat for some unknown reason, but it was just vertigo .

Has any dr taken a guess why you have the head symptoms and feel the way you Do mentally?
They say neurological and MCAS but I don't know , I think I've gone crazy

 

[Sarahloudobby]

I’ve never thought about it like that. I just feel like I’m sitting here but I’m not really here.
The sides of my head both hurt equally as though someone is holding it in a vice sort of grip and also sometimes I feel like my hard is too heavy for my neck which just sounds weird.
It is true that the more stress and anxiety you feel the worse it can get like a continuous circle. I worry sometimes that I’m losing my mind.
If I can get a decent nights sleep I do feel better in the morning but as the day goes on my head seems to feel worse.
@fredam7 sending you my thoughts. I hope things get better for you.
I don’t want to continually take medication

 

[fredam7]

You describe it all very well . It's exactly what I have . I can sit for many hours and don't know what happened.

The medication can backfire too . I wish I never took neurontin , I wonder if that made me crazy .

My neck is the same , turning it causes major problems . I can hear my heart beat internally . I wonder if I damaged nerves in my neck from being in bed .

Yes, my head hurts the same on both sides and I told the dr this can't be so symmetrical , how can that be ? Is fluid not moving ? Is there no oxygen to the brain ? Are the vessels narrowing ?

I'm delayed . I was quick and now someone can punch me in the stomach and I will feel bad hours later that I didn't stop it. My response is abnormal , go into a contraction of fear instead of running away . Hate this about myself now .

I hope you get better too . Always cover your head and ears before being exposed to any cold , a cardiologist told me that and she was right , something about the crystals in the ear and the vertigo worsening . Avoid all chemicals .

Sad for all of us . Just want to be free

 

[Wolfcub]

Dear @Sarahloudobby what you describe makes perfect sense to me.

I had a unilateral peri-orbital headache from the first day I became suddenly unwell. and it went on for months. I learned to live with it. The pain itself was low grade (fortunately) but heralded a whole litany of symptoms; nausea, tremor, muscle weakness, clumsiness, unusual sudden reactions to caffeine and alcohol even in very tiny amounts, heart palpitations, exhaustion, chest pains.
It, and the symptoms, but particularly the headache, was not responsive to painkillers.

Now, a year later, I can say (fingers crossed anyway) that symptom has lessened greatly, and so have some of the others, such as nausea and chest pains. I do occasionally feel a "ghost" of a twinge or two over my eye, but nothing like it was. That usually happens during crashes, and is mostly gone now.

My main symptoms now are generalised weakness, some muscle weakness, unusual unnatural exhaustion, some occasional shakiness and tremor, though that is better than it was. I still sometimes get palpitations still, but they don't upset me too much.

I was also sent for a head CT scan in November, and the findings were normal.

All other findings were also normal apparently. I decided -unless I feel really seriously unwell in the future -to keep myself away from any more pokings and proddings because I sense that the direction this was starting to lead into was that of a "psychosomatic illness" (simply because doctors were stumped!) and I know in my heart of hearts that would not be a true diagnosis. I stopped right there and decided to wait it out alone.
It is rather a lonely condition....to be in a position where you know for sure something odd, horrible, and physical is/was/has been happening to you and to get glimpses on the horizon of even the vaguest suggestion that it might be "all in your head" when you know for certain it's not.

 

[Pyrrhus]

Ok sitting here now and I don’t feel like I’m in my own head it’s liked I’m slightly removed from myself and watching everything from a distance.

Some ME patients complain of “depersonalization”.
That might be what you’re experiencing, although this symptom hasn’t really been studied.

Hope this helps.

 

[fredam7]

@Pyrrhus i know you meant this for the original poster but I looked it up. It can occur for a number of reasons including ptsd

Some people had it with head and neck symptoms so it gets confusing as stress exacerbates it but maybe there is a vessel , oxygen , neck , some kind of head issue going on and many other things I don't know about

That's why I thought maybe there was a psychiatric component , as depersonalization seems to be just that . But how it ties in to illness is confusing . Is it the strsss of the illness , the nervous system breaking down , mast cells , Gi.

I read and article where a woman tested negative for celiac but once she cut all dairy , sugar and gluten , the weird crazy , detached feeling , subsided. Mine gets much worse when I eat , I'm literally insane after I eat so she is on
To something

Also, Avenger has shed a lot of light on this drugged , destached feeling as well and it goes back to what we eat . He made a lot of progress

I wonder how many people across how many disorders , have this. But I do see 2 trends : head and neck issues and GI issues , seem to be most common

 

[valentinelynx]

Also you might look into CCI (craniocervical instability). There's huge thread about it... here. It starts out talking about Chiari malformations, but morphs into a thread about CCI. An astonishing number of forum members are finding they have CCI.

 

[Sarahloudobby]

Thank you so much for your responses. @Wolfcub the symptoms you listed are very familiar to me even the heart palpitations (but these are much less now after I cut out almost all caffeine) it’s reassuring to me to know that people understand. Sarah

 

[Sarahloudobby]

Also you might look into CCI (craniocervical instability). There's huge thread about it... here. It starts out talking about Chiari malformations, but morphs into a thread about CCI. An astonishing number of forum members are finding they have CCI.

I have had a look at that thread it’s interesting to me that you need a certain type of MRI scan to rule this out as after having a headscan you kind of automatically assume they have checked for everything.