[Su seb]

I am a teacher and I rested all summer and was able to control my headaches to some degree if I was very careful, quiet, stayed home, no bright lights, no loud noises....
Now I'm back at school and it is week two and headaches are out of control again.
I took topomax last year and didn't like it. I felt like a zombie and it didn't control headaches.


pLEASE give me your suggestions.
I tried to search on here but being on the computer increases my symptoms and I'm too sick to sort through everything.
Medications that helped you would be appreciated.
Acupuncture?
Chiro?

Thanks
Su seb

[berkeleybrain]

I'm so glad you are back to work, but so sorry to hear that you are having some struggles.

I just went through a new eval of my meds. UCSF doctor suggests the vestibular issues is mainly a migraine issue, so we switched trazodone for nortriptyline. I still take propanolol and tramadol.

The thought was a lot of the lingering side effects of vestibular and perhaps vision are migraine induced. So I am on a migraine free diet and trying nori, .

Perhaps a new eval of sleep and/ or migraine meds might be in store given the new stress levels you now have?

[Mokey]

Same with me...increased work hours (not teaching yet) and non stop headaches!

I try to rest in a quiet space. Today I went walking despite the headache. Would
Iove to have a medicine thatnworks but does not make you drowsy!

Hang in there. Must be tough!

[Su seb]

It sounds like we have lots of similar symptoms. Do you like the amantadine?

[Wndswptlady]

Hi,
I am having similar symptoms to you. I can control the headaches with medication (just switched to low dose Elavil) and quiet. Was in a place today with florescent lighting and that increased my light sensitivities. Topamax made me horribly dizzy.

I hope you get some help!

[Heid200]

I was just diagnosed with Vestibular Migraines and placed on Topamax. I can't add anything about if the meds are helping because their use is new. Fluorescent lighting and computer monitors are devastating to me. I went into a store today that had a malfunctioning fluorescent light and it set me off bad. I became disoriented and dizzy. I forgot where I was and why I was even there. As soon as I turned away from the flashing fluorescent light things normalized. Driving for lengthy periods bring on dizziness as do certain carpet patterns. I know this sounds strange and it is to me too. Hopefully the Topamax brings some improvement.

Good luck to the rest of you,

Rich

[LauraM]

I also have constant headaches closing in on 430 days in a row now. Last week I finally went to a headache clinic along with my concussion professionals. Later this month I see a neck specialists. As far as meds go they tried the following for me.

I do take Topamax at bed time though and that dosage is being increased...I have no side effects from it. Do you take yours at night? That might be the key to not feeling groggy from it.

Amantadine helped at a lower dose then it was raised and caused numbness in my face. I was taken off of it then.

Elavil was given to me in the past with no help but caused restless legs.

Vivactil seemed to help a little and did not make me tired, but gave me dry mouth.

They have tried a couple blood pressure meds, but my blood pressure is low normally so I was taken off them as a safety precaution.

The headache clinic gave me Imatrex that I can self inject...suprisingly painless and it helped for a bit. At this point any relief is welcome! The
trade off though is he said no OTC pain relievers ever I am not sure I can live up to that. But the doctor did seem to be familiar with not just migraine suffers but PCS patients with persistant headaches too. Gave me a little hope. You have to remember things work differently for each person. Maybe there is a headache clinic near you, or contact the doctors you were working with and dicuss it with them. Best of luck to you and feel better soon!

[Mokey]

I am too tired to follow this thread very well ....but wanted to add that I received the occipital neuralgia nerve block (lidocaine with a steroid) and it has been amazing!!! In terms of keeping that headache at bay. The one that starts in the neck, goes over the head and behind the eyeballs. It is 17 days so far, and those times when I should have had a huge headache....nothing much. So excited that something worked.

A very smart new neuro opthamologist in my city....he is the one that said this was an important thing to try. It may last for a few eeks...but in some people it can give relief for months and in others a permanent cure to that type of headache. First thing I found that really helps those headaches.

[MWJ_]

Just joined today after seeing posts such as this. My 16 year-old son is 2.5 and 3 years post concussion - 1st concussion hit back of head hard on the ice similar to Mokey, with symptoms like many of those reported by various people here. 2nd concussion less severe but same.

He has a long litany of issues, and has seen more MDs, Chiropractors and Therapists than I have in my lifetime. He has been able to get along moderately well for the past year or so, but 6 days ago had a peculiar sudden onset visual focusing problem. ALL neurological testing is normal except for the fact the about every 1-2 seconds his eyes switch from sharp focus to blurry (for 6 days straight). His eyes have this accommodation pulsation NOT synchronized with his heart beat (with moderate headache), but no pupillary or convergence symptoms, no vestibular or nausea symptoms. The only thing that stopped it for a couple of hours was the eye-drops that the eye doctor used to paralyze his pupillary and focusing muscles.

We cannot yet rule out migraine or anxiety, but my hunch is that it is a brainstem problem related to his prior concussions, possibly aggravated by a more recent "unrecognized" occurance. Our biggest frustration is trying to figure out who is most appropriate specialist to see, and what kinds of tests can be done to help determine the root cause, whether or not anything can be done to solve the problem.

If anyone has suggestions of what type of doctor we should find, or knows of someone with similar symptoms that information would be greatly appreciated.

[jobby99]

You probably need to have specialized xrays taken of the c1 and c2 spine from an upper cervical specialist just to make sure nothing is out of place or damaged to know for what is going on with the back of your head. You are obviously getting treatment for the headaches, but other symptoms can develop with time such as forward head posture, loss of smell, etc. that the injections may not be effective against. Hope this helps.

Originally Posted by Mokey

I am too tired to follow this thread very well ....but wanted to add that I received the occipital neuralgia nerve block (lidocaine with a steroid) and it has been amazing!!! In terms of keeping that headache at bay. The one that starts in the neck, goes over the head and behind the eyeballs. It is 17 days so far, and those times when I should have had a huge headache....nothing much. So excited that something worked.

A very smart new neuro opthamologist in my city....he is the one that said this was an important thing to try. It may last for a few eeks...but in some people it can give relief for months and in others a permanent cure to that type of headache. First thing I found that really helps those headaches.