Is this normal? My question landing pad

[hopefullmommy]

The good news is my MRI was clean.. bad news is we still don't know what is causing my head to hurt so much.. back to square one.. trying not to get depressed about this square one thing.. I'm very happy for a clean MRI... just feeling like no one knows what's wrong with me and therefore they can't fix what they can't see..

 

[Nakamova]

Headaches are one of the toughest things to diagnose and treat -- a bit like back pain in that regard. Hang in there, and keep trying to find clues by tracking when the pain starts and what make it worse.

 

[hopefullmommy]

Ok... on top of all of this, my husband doesn't think I have seizures because I had a clean MRI and an inconclusive EEG... I don't know how to explain that I do have them.. he then asked me why am I holding on to this.. "this" being seizures as if I want to be sick or something... I'm crushed... what do I do? I have felt fine for about 5 days.. then all of a sudden *BAM* pain so bad I wanna stay in bed for days.... 5 days of feeling good for me is a very long time... it just doesn't happen ever any more.

 

[Nakamova]

Oy! It can be very tough when your symptoms aren't taken seriously, or you are somehow "blamed" for having them.

You might show your husband this:

The EEG is not foolproof. It can only measure abnormal electrical activity that occurs during the test period. Sometimes, the brain of the person with epilepsy functions perfectly normally during the test. Or the electric patterns that the device is looking for happen too deep in the brain to be picked up by the scalp electrodes of the EEG. When the EEG doesn't find anything unusual, it is common for the patient to get a continuous, 24-hour EEG monitoring in hospital. About 20% of people with epilepsy have normal EEGs, and a small percentage who don't have epilepsy have abnormal ones!

from: http://www.epilepsymatters.com/english/faqdiagnosing.html

 

[hopefullmommy]

I have been having what seems like out of body expediences. Anyone know if this is a form of seizure or type of seizure... I'm getting them when I close my eyes before bed or when its just long enough while I'm quiet enough it happens.. anytime.. help! Freaking out! It comes with dizzyness and it just scares me.. I feel like I can't talk or think for several minutes after. Intact, I can't. Anyone have an idea?

 

[Nakamova]

Seizures occurring in a part of the brain called the angular gyrus can produce an out-of-body sensation. See: http://www.nytimes.com/2006/10/03/health/psychology/03shad.html?pagewanted=all

 

[hopefullmommy]

Thanks again Nak!! Hubby and my family is on board.. this is getting easier.. and hard all at the same time.. I'm so ready to figure this out.. it feels like it's "in my head" and no one believed me at first and now they do.. and the machines can't catch it.. ugg.. oh well.. giving it time..

 

[Nakamova]

Good to have your family on your side. It can make a huge difference.

 

[hopefullmommy]

So I felt kept awake by these strange twitches all night.. I'm exhausted.. should I be worried? I mean they went on ALL NIGHT.. waking me up at odd hours.. I'm so tired.. I haven't journaled it or called my dr because I'm not sure what to make of it.. it freaked me out though. My husband wasn't disturbed in his sleep at all by them so I don't know what to do... Help..

 

[Nakamova]

Sounds like myoclonic jerking -- worth mentioning to the doc. Make a note of it, and consider trying a magnesium supp to see if it helps. Avoid caffeine (I assume you do already), and try progressive relaxation right before you go to sleep.

 

[hopefullmommy]

It feels like someone hit my head with something... what the heck.. Both temples are killing me.. OMG!! Along with the back of my neck feels like it's just not doing so good.. ugg.. the chiropractor can't do anything more for it.. so much pain and pain pills don't help any more.. No matter if Im hydrated or not, eat enough or not.. I'm in pain.. what gives? Some days I just want to give up... I am just sick of this pain.. I feel like no one understands this migraine.. Everyone asks if it's gone yet.. It's not.. I've been on meds to help it for 4 or 5.. maybe 6 months.. it's feeling better 4 out of 7 if not 5 out of 7 days. That's HUGE! But man, then there are weeks that it's 4 of 7 that are crap.. Even if I get good sleep (ok.. that doesn't happen when there is this much pain.. nice wish)... Ok.. vent over..

 

[Nakamova]

Here are a few ideas (apologies if you've already tried them):

Supplements: Magnesium, coenzyme Q10, riboflavin, and vitamin D. (Up to 50% percent of headache sufferers can be magnesium deficient. The other nutrients seem to help some folks with headaches, so worth a try.)

Aromatherapy (a little lavender or something else relaxing rubbed into the temples).

Gentle Yoga -- mostly as a preventative measure, for stress reduction and improved breathing.

Biofeedback or Neurofeedback.

 

[hopefullmommy]

I keep forgetting to get the Magnesium.. I take most of the other things (vitamins that is)

Aromatherapy.. never thought of that since scented things makes it worse now But maybe that could work.. Tried most everything else..

Looking into the yoga thing.. I wanna do it at home.. But sent the kids away lol

I'll have to look up Biofeedback and Nurofeedback.

Thanks Nak! You are the SMARTEST woman I know!! Would you happen to know anything about spinal cord shrinking? Like, that it's possible the pain is caused because the cord is shrinking and because no one knows (doctors and scientists alike) what it is or what causes it, there is no cure, no rhyme or reason to why or how or anything.. My husband has a co-worker who's wife is suffering with the same pain as me and this is as much detail as they came up with. Same exact tests as me just that she has had it for much longer.. This freaks me out a little..

 

[Nakamova]

Absolutely, spinal stenosis in the C6 and C7 areas can compress the nerves and cause headaches. There can also be referred pain -- pain that radiates up from the neck and shoulders.

Often stenosis will cause symptoms in the arms and legs as well -- is that something that you've experienced?

 

[hopefullmommy]

Neck and shoulders yes.. mostly neck I get the stenosis.. my toes will go numb at odd times for no reason or my hands will go numb or legs will go numb from knee down.. Is that what you mean? I am hungry and it's time to feed the kids so I have to run, but I'll be back to look.. Thanks!!

 

[Nakamova]

Yes, tingling and numbness in the hands and legs are also signs of stenosis in the cervical spine. Primary treatments are non-surgical -- NSAIDs, corticosteroids, and physical therapy -- since surgical approaches carry a fair amount of risk and don't necessarily prevent recurrences or problems down the road.