'Brain Pain'

[Camille W]

Hello This is my first post on PR, but I've done a fair bit of 'lurking', especially in the doctor thread, trying to find one to see me. I think I've found one, but that's for another thread, I suppose.

I have been sick now for over 2 years. My battle with this illness began as mono, which I recovered from to the point that I was able to attend college.

After my first semester on campus (I went in as a sophomore), I had a summer of fatigue, but not too bad or too many terrible symptoms. I guess I had the flu-like tiredness.

Then when I returned for the Fall semester to start my junior year, I started crashing in October with frequent colds, and completely lost normal functionality by Thanksgiving. My friends were walking me to classes just to make sure I would get there without collapsing. I came home at Christmas, planning to spend this year at home working, taking classes. and trying to get my health on track.

The 'taking classes' part has gone remarkably well, despite the huge cognitive issues. I am now a senior and if finances and health allow (which is doubtful), I will graduate next spring. It is getting a lot harder to focus and study for classes, though. I barely passed the last exam I took. The 'working' lasted for about two months before I was forced to admit that I couldn't perform my daily job as well as take classes (getting up at 3 a.m. to be at work by 4 wasn't helping my case any). The 'trying to get my health on track' bit hasn't worked out much better.

I've seen a few doctors. Finally an osteopath a D.O.* put me on an antiviral for a week. (I looked it up to make sure I spelled it right; I thought it was Valcitrax, but I'm thinking now I must be remembering wrong and it's called Valtrax.) The week I was on the antiviral I had almost normalcy. Then I had a crash period (which was my fault... I was in a wedding and wasn't taking it easy...) and then a period of basically complete normalcy. I felt like a superwoman - taking care of laundry, housework, cooking, and volunteering at my church.

I remember very clearly how the 'window' of 11 days of normalcy ended. I was laying down and I could feel this hand-like presence reaching itself into the back of my head as if it were passing through my skull, and the hand clenched my brain and would not let go.

The feeling of a physical hand inside my head is gone, but the clenching feeling in my brain is not. My brain itself hurts. I have never had this before in the four 'stages' of my illness (mono, summer relapse, Nov 11-June12, or current phase). I have chronic headaches, but... they aren't really headaches. It's just this horrible aching in my brain. I call it 'brain pain' because I have no other word for it. It seems to be part of my PEM, but often it comes with stress as well; very often, it just shows up for no apparent reason.

It's destroying what little social interaction I have. When I get the headache/brain pain I can only tolerate a tiny battery-powered lantern in my room, and I run my fan constantly because simple noises my family makes also irritate the pain. I'm not completely housebound, but my computer is my window into the world, and when I'm not able to use it for texting, Facebook, e-mails, etc., it really kills. It takes a lot to admit to my best friend, "I'm sorry; I know I said we could Skype tonight, but I can't anymore."

I'm wondering - has anyone else had this 'brain pain'? Is there anything you've found that helps relieve it? I usually lie down, especially if it makes me feel dizzy. Sometimes ibuprofen seems to help, but I don't want to take that constantly, so I usually only take two or three when it gets to be unbearable.

*Edit: I stand corrected; apparently 'osteopath' should technically refer to a cranial osteopath. This was just a D.O., not a cranial osteopath.

 

[Nielk]

Hi Camille,

Welcome to the forum...as a new member.

I'm sorry to hear about this "brain pain" that you are feeling. It is not uncommon to have "strange" headaches with CFS.
It's one of the diagnostic criteria.

I have been suffering from CFS the past nine years and the headaches have been my most painful (sometimes unbearable) symptom. I have gone to a few Neurologists, Internists, ENT's and Allergists with it. Depending on which doctor looked at it, it was diagnosed as Migraines, Sinus headaches or Allergy headaches. I tried all kind of Migraine medications, sinus and allergy remedies and my headaches only intensified as time went on. I was so much in pain that only three months ago I was taking Klonopin, Ambien and Benadryl every day and when the pain was unbearable I would take Vicodin too. Nothing really helped the headaches.

Ten weeks ago, I started aqua therapy for my pains and by coincidence I found out that by using a "neck doodle" to support my neck, my pain was totally alleviated. The first time this happened I cried from joy. I didn't think that this was ever possible. Since then, I have been doing a lot of gentle exercises for the neck and I apply heat to it a few times a day and my headaches have diminished tremendously.

It's very possible that I'm a unique situation but, I would advise you to look into the neck and head connection. I personally never thought of that and all the doctors I had seen never suggested it although neck tension is a common cause for headaches.

As an aside, I don't think that it's possible to feel pain in the brain itself. You might have an vascular issue which would point to migraines or an inflammation issue which would explain why the Ibuprofen helped.

Can I ask you why your Osteopath only put you on anti-virals for a week? Especially since it seemed to really help you.

Sensitivity to noise is very common with CFS. The only solution that I know of is avoidance.

I hope you discover the cause of your headaches and the solution for them.

 

[Shell]

Hi Camille, I'm fairly new here too
I get those horrible back of the lower brain pains too. I've tried Migreleve and I take 50mg Amiptriptilene for all the pain. I know a lot of people take Ami just for migraine.
I've had adjustments done by a chiropractor which have helped for a time, but then the migraines come back.

I'm going to nick that neck pillow idea Neilk!

The other thing I've found helps - but it's up to my body to do this - is throwing up. It seems to break the pain, nausea, pain cycle for a while. Dark glasses also help me when it's bad.
Sorry, there's not much else I can think of - most often it's a case of waiting the bloomin'things out.

 

[nanonug]

has anyone else had this 'brain pain'? Is there anything you've found that helps relieve it?

I am sorry to hear you find yourself in this situation. My health problems also became apparent sometime before college and a 5-year degree ended up taking me 8 years to complete. And that was more than 20 years ago!

Your "brain pain" and "pressure" that you feel is, in my opinion, indicative of some kind of inflammation. The first thing that I would do is make sure the mono is really gone. After that, I would see a neurologist to make sure there are no nasty stuff happening. This being said, you may want to have a look at a product called NeuroProtek which purportedly helps reduce neuroinflammation. I also invite you to visit the ME/CFS is a mast cell disorder (hypothesis) thread for additional info on NeuroProtek and to determine if any other symptoms you might have are mast cell related.

Good luck!

 

[Sushi]

Camille,

If you responded well to an anti-viral that is a good clue! I wonder why he only gave it to you for a week? The usual course is many, many months. You might want to look into this.

Best wishes,
Sushi

 

[Marlène]

hello Camille

have a look at the website of dr Lerner and submit it to your doctor to get rid of that mono.
http://www.treatmentcenterforcfs.com/links/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

Maybe a neurologist wants to prescribe Topamax 100mg, it helped me after a while.
If you are noise intolerant, you may not have enough vitamine B and in particular B6 which is a consequence of too little B12 and folate.


Headache can be triggered by histamine-rich food, there is a link with vit B6 as well
http://www.ajcn.org/content/85/5/1185.full.pdf
Try to keep a list of your meals and see if it triggers headache. Start with gluten and milk, then reintroduce it after a few weeks. See if it changes anything. That's how you can try things out.
I have it with chemical products like gasoline, cigarettes, fresh paint, not enough sleep, spicy herbs, negative stress, ...

 

[Dainty]

I always feel pressure at the base of my skull, sometimes developing into a headache. For many years it was one of my most significant symptoms, so that about 5 years ago I seriously investigated whether or not I had Chiari Malformation. CF is a birth malformation that often doesn't show symptoms until later in life. As you can see from the pictures in the link, the base of the brain is literally getting sqeezed through a tiny opening and the spinal cord is being compressed as well. That would be a problem.

For me, my scans came back free of CF, but turns out I had been on the right track. The first cranial osteopath I went to last year felt the bones of my head and said that the ones at the base of my skull were crumpled inwards, putting pressure not only on my brain but also on the nerves and veins and everything that moved through that area, similar to the way CF causes problems. The treatment she did immediately relieved it, it was wonderful! Unfortunately I've had to focus on other structural problems for a while since so the symptom isn't fully resolved for me yet, but it's only been a light pressure for some time now. I expect complete and permanent resolution of it for me with this treatment.

My chiropracter not only wasn't aware of the problem, but also she actually pressed the bones further inward!

Another example of a similar thing is positional cervical cord compression. Again, from the pictures you can see how structural problems can cause a certain movement to place pressure on your spinal cord, which would undoubtedly cause pain.

 

[taniaaust1]

hi.. welcome to the site

The 'taking classes' part has gone remarkably well, despite the huge cognitive issues. I am now a senior and if finances and health allow (which is doubtful), I will graduate next spring. It is getting a lot harder to focus and study for classes, though. I barely passed the last exam I took.

I suggest to try to cut back on your studies some and not keep trying to push throu at the level you are at now which is making things worst. It may be better to plan to achieve what you are doing now over two years then one....

I tried to push myself throu collage and went throu hell doing that, only to find come the end of the year.. my brain was like slush and everything I learnt all year.. was gone. I couldnt remember hardly a thing and there was no way I could do any of my exams and I ended up having to drop out completely.

I've seen a few doctors. Finally an osteopath a D.O.* put me on an antiviral for a week. (I looked it up to make sure I spelled it right; I thought it was Valcitrax, but I'm thinking now I must be remembering wrong and it's called Valtrax.) The week I was on the antiviral I had almost normalcy. Then I had a crash period (which was my fault... I was in a wedding and wasn't taking it easy...) and then a period of basically complete normalcy. I felt like a superwoman - taking care of laundry, housework, cooking, and volunteering at my church.

Avoid the cycle of suddenly doing heaps just cause you are feeling better.. only to then find yourself crashing. Its a cycle which will keep your health down instead of giving yourself the possibility of very real improvement. Remember the better health is only cause of the drugs and allow your body to use that improvement to really heal itself. Think of the hare and the tortoise eg "slow and steady wins the race".

The feeling of a physical hand inside my head is gone, but the clenching feeling in my brain is not. My brain itself hurts. I have never had this before in the four 'stages' of my illness (mono, summer relapse, Nov 11-June12, or current phase). I have chronic headaches, but... they aren't really headaches. It's just this horrible aching in my brain. I call it 'brain pain' because I have no other word for it. It seems to be part of my PEM, but often it comes with stress as well; very often, it just shows up for no apparent reason.

It's destroying what little social interaction I have. When I get the headache/brain pain I can only tolerate a tiny battery-powered lantern in my room, and I run my fan constantly because simple noises my family makes also irritate the pain.

This illness really can have the oddest places feeling pain. There isnt a place in my body which hasnt felt pain with it at one time or another. The brain pain.. when I get that (not really a headache but something else), I tend to think that I get that due to brain inflammation of some kind going on (reactivating virus?). Hence things like light and esp sudden sounds also hurt my brain. In my case seeing something close moving fast hurt my brain too (eg if one is on side of the road trying to cross it and a car goes by). Fortunately for me, it is a symptom that I now dont have (it went away itself but I get different symptoms now).

Laying for a while (by that I mean sometimes days or even a week) in a darkish room with no noise.. is about the only thing Ive found which helps brain pain. I didnt find anything in meds which helped (I didnt get to try antivirals).

I too had mono in my past.

 

[peggy-sue]

Is this the "it hurts to think" sort of brain "pain"?
I describe it as my brain is suffocating - like it's been vacuum packed, then shoved in a pressure cooker - it's not a physical pain as such - it's more like the "eeeeeeeek" feeling you get in your head when you hear a fork scraping the bottom of an aluminium pan, or polystyrene being scrunched and doing that "squeal" - or the blood-curdling noise of a toddler screaming.
I had it for years - it was the pits.
30 minutes after taking one little sublingual vitamin B12 tablet, it was gone.
I now take sublingual Vit B12 every day, and rarely, if ever, suffer from this any more. About 5 years now!

 

[Dainty]

Is this the "it hurts to think" sort of brain "pain"?
I describe it as my brain is suffocating - like it's been vacuum packed, then shoved in a pressure cooker - it's not a physical pain as such - it's more like the "eeeeeeeek" feeling you get in your head when you hear a fork scraping the bottom of an aluminium pan, or polystyrene being scrunched and doing that "squeal" - or the blood-curdling noise of a toddler screaming.
I had it for years - it was the pits.
30 minutes after taking one little sublingual vitamin B12 tablet, it was gone.
I now take sublingual Vit B12 every day, and rarely, if ever, suffer from this any more. About 5 years now!

Peggy, you've described that so well. For me, this symptom is different than the pressure and pain in the back of my head, but when I first became severe it was one of my worst symptoms. I couldn't tolerate conversations or the presence of another persom because of this symptom, and to other people it showed up as extreme irritability, i.e. screaming at them to get out of the room while simultaniously apologizing. Worse than a thousand fingernails on a blackboard. Disappeared with sublingual B12. Would begin to come back anytime I slacked off on B12. But over the years it has improved; I don't supplement B12 on a regular basis anymore but it's one I'll still take on occasion.

 

[Nielk]

This B12 connection is very interesting. Right now, anytime anyone uses the letter "s" (which is impossible to avoid), it sounds to me like a nail scratching a blackboard. It's been driving me crazy!

 

[Marlène]

I'm taking sublingual B12 for a while now and hope your tip works for me too because the isolation due to noise intolerance is terrible. Can you precise which B12 you take and how much? (Methyl, dibencozide, ...). Injections (hydrocycobalamine) improved my brain fog after a few months.

 

[peggy-sue]

I take the Solgar brand sublingual stuff, it's a "cyanocobalamin prep." according to the label.
1 mg (or, as it is on the bottle, 1000 micrograms, but I haven't got a micro character on my keyboard.)

 

[Dainty]

This B12 connection is very interesting. Right now, anytime anyone uses the letter "s" (which is impossible to avoid), it sounds to me like a nail scratching a blackboard. It's been driving me crazy!

Nielk, it sounds like you're describing misophonia: "...a neurological disorder characterized by negative experiences resulting only from specific sounds, whether loud or soft". Also known as Selective Sound Sensitivity.

My SSS has varied over the years; I haven't noticed B12 helping with it.

Edit: I should clarify. There have been times when just the sound of a person's voice is too much. If I had a recording of them speaking jibberish (not words) and played it it would send me through the roof.

That isn't the type of thing B12 helped me with. B12 helped when my brain had that response to the mere presence of people, trying to process and respond to what people were saying or doing. Watching movies was fine, but it was actual interaction that caused the problem. So it was more of "thinking feels like my brain is suffocating" than "I have to get away from the sound."

Even at the worst of my B12 relieving symptom I would have been able to listen to a jibberish recording of voices and I'd do fine, because it wouldn't require processing anything through my brain. At the worst of my misophonia/SSS, however, even a recording of the sounds would cause every muscle in my body to tense, I'd get "stuck" frozen there and be unable to do things for a few hours. Certain sounds felt traumatic to me and I had no idea why. Lately it's been improving for me, I suspect because of hte treatment I'm on, so we'll see.

 

[peggy-sue]

I find audience/crowd noise impossible to tolerate. I can't stay in the same room if sport is on the tv, or certain shows with lots of audience "participation" and overdone applause.
Sometimes certian noises bother me more than others - I was really struggling the other evening with an actor on a programme who hissed his ssss'sss...... eeeeeeeek

 

[Sallysblooms]

For sound and stress problems you can tests the neurotransmitters and also cortisol levels. The correct level of Seratonin and Cortisol levels help us deal with sound, light, and stress.

 

[peggy-sue]

We don't get those sorts of tests in the uk..... we don't get any tests, really.

 

[Sallysblooms]

So easy to do, what a shame.

 

[nanonug]

I find audience/crowd noise impossible to tolerate. I can't stay in the same room if sport is on the tv, or certain shows with lots of audience "participation" and overdone applause.

Do you have ADD? This seems like a low dopamine thing...

 

[peggy-sue]

It's just sensory overstimulation - and my ME brain can't handle it.
I've always thought I probably have mild ADHD since I found out about it - and like most folk of my generation and before, I've treated it all my life with coffee and fags.