Strange head sensations and headaches

[jobell5]

Hi I am new to this board and had my AN removed November last year.  I have just started getting bad headaches in the last couple of weeks and really strange sensations in my head - apart from the normal feelilng like it is going to explode I am feeling different weird sensations over my head with no particular pattern which is becoming very concerning.  Does anyone else experience this.

[Jim Scott]

jobell5 ~

Hi and welcome, although I'm sorry to learn about your headaches, which, we know, can be frustrating as well as painful.  I'm not a doctor and cannot credibly speculate on the cause of the headaches but it isn't unreasonable to associate them with your AN surgery.  I would definitely contact your AN physician and/or your primary care physician and let them know what is happening.  A fresh MRI may be in order, but that is your doctor's call unless you chose to insist on it, which I would.  If an MRI shows no issues, you may want to ask for a referral or simply self-refer to a Pain Management specialist. 

Jim 

[Lizard]

I also have strange feelings, they are technically headaches, but not like a normal headache...mine are nerve related, but I would talk to your Dr.
good luck getting to the bottom of this.  The headaches can be debilitating, but there are good meds out there to treat them.
Regards,
Liz

[bell]

Hi I also had surgery last Nov and I do have headaches and weird sensations.  I also have sharp pains off.  Ended in the ER 1 month ago because of bad pain which wasn't ususal headache but blockage pain.  Everything was ok and coded as headaches. 
Bell

[Denise S]

Hi there and welcome to the forum.       Of course I picked up on this topic mostly because I ALSO had my AN removed Novemeber 9th.     

Maybe you could give us some of your info.    Like what type of surgery you had?      Size of AN?   Did they say if it affected any additional nerves?    Any complications before now, etc.       What part of the country you from?    (I asked that one because I am now finding out A LOT of people seem to be having issues that may be related to seasonal weather changes:    like sinuses or allergies)

Hope it's not too much to ask, but since you have no other posts on here it is hard to relate.   Otherwise, I have done a good share of my own 'homework' since November that maybe if in a similar situation I could help......or for that matter, someone else may relate more 

Thanks,
Denise

[ombrerose4]

I was just going to post my question when I found this post. I have had chronic headaches for the past 4 mos. or so. I also get weird stabbing pains on the opposite side of my head. They are really quick and painful, kind of take your breathe away. Since I had a blood patch procedure for my headaches, (docs are thinking csf leak), my headaches are significantly better (except for last week with the nasty storm we had in NY). But now the stabbing pains are more frequent, or appear to be because the other headaches are less severe and not masking them. I am beginning to think I am crazy! Wonder why they are on the opposite side of surgery? any suggestions out there? I am going back to my pain doc on Monday and will talk to him about it. I will be having a second blood patch, so maybe the pains will all go away

[Syl]

Hi jobelle5:

Can you describe the strange sensation a bit more?

I've had chronic headaches since 2wks post op. I never suspected I could get so many different types of delbilitating headaches, but I do get them. I'm seeing a neurologist for this. He has helped a great deal. I'm still getting the headaches 1 year after beginning treatment with the neurologist, but it is getting better.

Syl

[LisaP]

Hi,

I experience headaches almost daily along with head fullness and a weird sensations at times.  Hang in there you are not alone.  I also experience all of those other wonderful symptoms that come with an AN.

LisaP

[goldlady]

I have been dealing with headaches the last 10 years sorry to say since my AN removal. The first six months there are pressure headaches and tingling sensation which are the nerves regenerating.  It does get better, but the weather does effect in the future.  Keep monitoring them and see your doctor if they get too bad to handle.
 
 

[Rivergirl]

My head is a mess as well.  I feel like I get surges like the tides, pressure and fullness in the AN side and this all causes headaches and balance instability, if it is not the AN I probably should find out what it is.  We ANer's have such a wide array of symptoms, many we just incorparate into our life and figure this is normal, doesn't make it any easier, it still sucks to have symptoms everyday.

[Nancy Drew]

Hi,  I had GK, and it seems like maybe I shouldn't have the same experiences as those of you who had surgery.  But, I have bouts of weird sensations in my head, and I get a lot of headaches.  These symptoms came on about six months after GK.  I was worried about the sensations, and the AN doc said it is not a symptom associated with GK.  But, I had the MRI just in case something was going on.  Turned out I had a sinus infection, and they thought that might be why I was having those weird sendations in my head.  Had sinus surgery to open the "windows" which I have had done several times in the past.  But, I still get those weird sensations in my head.  My next MRI is in Oct.  My last one (Oct. '09) showed a tiny bit of growth, but that is suppose to be normal so the AN doc said.  I also have balance issues that I didn't have before GK.  I swear, I just haven't felt that great since I had GK.  Problems come and go.  But, I was also diagnosed with fibromyalgia, and I think it is hard to sort out what causes what.  I'm just playing the waiting game for now hoping the GK is doing its job.  I know it will take several years to have a more definite idea of the outcome of what the radiation did to my AN.

Nancy 

[wise78283]

Hello,  Yes I know about those headaches it can be very frightening.  Mine began about 6 months after surgery.  I thought something must have gone terribly wrong with the healing or the tumor was regrowing.  However, I was informed by my new doctor (I moved across country to get better medical care)  that the craniectomy procedure I had done in which the bone is not replaced  was part of the problem.  He told me they do not even do that procedure in this part of the country because the nerve and muscle of the neck start to regrow into the dura matter of the brain. 

Fortunately he referred me to Dr. Nasha Holt and Dr. Jeff Turner who in about 4 weeks of treatment have done miraculous things with this pain.  It is tremendously reduced and I understand the trigiminal nerve was the culprit behind all the strange head sensations and headaches.   People do come from out of state to see them as I understand there are only about 15 practioners working with this particular nerve in the US.  They provide the best care I have ever received.   

It is amazing that it was a source outside my brain causing all the headache symptoms.   If you google their site their is a questionaire about what types of pain they are treating.  It answered my questions.   Take care... things get better

[Lizard]

It is tremendously reduced and I understand the trigiminal nerve was the culprit behind all the strange head sensations and headaches.   People do come from out of state to see them as I understand there are only about 15 practioners working with this particular nerve in the US.  They provide the best care I have ever received.   

It is amazing that it was a source outside my brain causing all the headache symptoms.   If you google their site their is a questionaire about what types of pain they are treating.  It answered my questions.   Take care... things get better

Trimengial nerve is part of my problem too, what does your treatment involve??

[nmspee]

I am new to this site. I had my surgery just 12 days ago. One week ago I got my first headache. It seems they occur only when I'm lying down. I wake up with them. They are sharp, stabbing pains in the right temporal area that are intermittent. Once upright they go away. I'm wondering if swelling might be the cause. One evening I ate some salty pretzels and that was the worst night. The headaches didn't start until two days after I completed my post op course of Decadron.
My balance is getting better. I need the cane only for long walks outdoors. Driving on local roads felt fine yesterday.
Any suggestions would be appreciated.
d***

[Mei Mei]

That's my problem...the killer headaches are always at night when I am lying down sleeping.   I am going to try sleeping with a wedge pillow tonight and also with the airplane memory foam neck pillow that helps.   I would say that the pain is at a number 10.   I just can't stand it.

Mei Mei