I think you have reason to be concerned this might not be a fit. On one doctor respected website, Dr. Dafer says it can be associated with bilateral parasthesia, but you say your numbness is mostly accociated with just one side of your body- the left.
He also states that type most often is observed in adolescents and young ladies, where as you look like you may the mother of a tall, strapping young man in graduation attire?
He describes what they think may cause the symptoms of the disorder, saying vertebrobasilar (which has to do with the back part of the brain from what I can gather) vasoconstriction (constricting blood vessels) which might lead to lack of oxygen back there. But you say the headache originates through the eye sockets, so with my admittedly puny logic, it is hard to believe that the headache you describe is stemming from an ischemia (lack of oxygen) at the back of the brain, isn't it?
Have they done an MRA/MRV to check for signs of TIA (mini-stroke) activity or other blood vessel abnormalities, such as aneurysm? It seems they must have seen something in the basilar area on a test? Why did they think it was seizure activity at first? Was it based on an EEG? The article indicates it's difficult to identify basilar migraine with testing- did they take an MRI or CT scan right on the heels of an attack? (See private message)
You say you wake up with the headaches- have you ever been tested for:
a) sleep apnea, which can cause a person to wake up with headaches,
b) TMJ dysfunction (with grinding or clinching of teeth), where a person can awaken with headache,
c) had your ferritin & blood iron tested to check to see if iron deficiency could be contributing to some of your symptoms,
d) considered endocrine hormonal testing to try to find any abnormal results that would lead them to look for a pituitary tumor (normally takes a specially dedicated dynamic MRI to look for pituitary tumor), which can cause migraines amongst other things?
e) taken your blood pressure to see if it is very low when you awaken in the morning?
f) done orthostatic blood pressures, laying & standing?
I would also latch onto this diagnosis of optic neuritis, which I found online is thought to be brought on by an auto-immune disorder. Re: MS, I believe sometimes it is not an easy to get diagnosed disease. And have you had any other auto-immune testing? I have a cousin who is getting tested for CADASIL (acronym for long name), a genetic problem- she has migraines and severe light sensitivity.
Hello 8-) Thank you so much for replying.
Yes, numbness is on one side only (usually)
I am not a spring chicken although I do TRY to act like it sometimes.
My headaches almost always seem to originate from my eye sockets (mainly the right, but the optic neuritis was worse in the left) and radiate to the base of my skull and not the reverse; although once it has moved to the back it radiates down my neck/right shoulder, then back to the front of my head and out (by this time you may as well say I need a vice grip to enclose the entire skull...)
I have an almost constant whooshing in my left ear... I just about forget about it now though because I have become used to it. After so long I have considered it a friend because I can always tell if my heart is beating at a regular pace or not... Once in a while I will get an actual high-pitched ringing with it.
I have had an MRI of the brain and cervical spine, EEG (evoked potential?), blood tests supposedly to test for vitamin levels, iron, white and red blood count (oh... was waking up with large bruises on my legs for no reason... was asked if I was bumping into things. I think I would remember that), etc, Lumbar Puncture to test pressures only (they never tested the fluids and I still do not understand why) . I was tested for Lyme disease...
Besides that, all I can say is the remaining people that I saw just wanted to put me on antidepressants. Besides this stuff going on, I am far from being depressed and am not in pain from depression. I have so much to be thankful for and enjoy in life... I still try to grin whenever I can 8-D
I am glad you have a positive outlook, as pain can often dampen one's spirits! I had another thought of wondering if you might have more than one thing wrong... maybe BTM is one of the things wrong, I don't know. Did they decide to veer of a diagnosis of Meneires and if so, what reason did they give? You say the wooshing has become a friend and seem to equate it with a pulse? Did the doctor tell you that is what you are hearing in your ear? And if you can always tell when your heart is beating at a regular pace, does that mean you have noticed times where it is not? And if those times happen on a daily basis, have they done any holter monitor testing, echocardiogram, etc on you?
I find it interesting about the large bruises- one can easily bruise with Cushing's syndrome- do you have any of the other symptoms associated with that disease? Are you on any blood thinning medication (anti-coagulants) like aspirin? Have they ever tested to see if you have a normal clotting (prothrombin) time?
A one sided socket headache definitely sounds migrainous in nature, along with nausea. But your symptoms sound more complex definitely than simple migraine. Did they ever consider hemiplegic migraine as a possibility? (See private message.)
I was never officially diagnosed with Meniere's... it was just "unofficial" but mentioned and what I was treated for. The medications worked for about a year (diazepam and meclizine... not sure if I am spelling them correctly).
As far as the wooshing in my ear and the pulse... it does seem to "woosh" with each beat, but there's nothing more to it than that. When the neuro-ophthalmologist thought I had pseudo-tumor it mattered, but now it doesn't I guess. Now I just think, "Well, at least I know and can officially say my heart is definitely beating... I can hear it!" That's what I meant when I said it has become my friend... a little 'bad' humor on my part.
They did test the clotting factor... I am not on any blood thinners.
The doctor said today that I do have complex migraines. They have taken me off of the Topamax and are going to try me on Depakote to see if that will make a difference.
I will keep you posted. Thanks for your help and support. 8-)
As someone else commented - don't like the sound of the medications. If you read up on the medications you will see that they all have side effects, some more than others. The Depakote is normally given to treat bipolar (extreme depression) and seizures. Both Topamax and Depakote are taken as a daily dose I believe to prevent migraines. I also tried this route but the side effects EVERY DAY were not worth it for me. Have you tried medication that treats migraines, one migraine at a time. In otherwords, just taking a triptan - it stops the inflamation in the brain - that causes the pain whenever a migraine hits? Remember that all this medication is very heavy on the kidneys and liver.
I have just taken a mazalt wafer under the tongue for a migraine - my own fault as yesterday I ate a small chocalate bar (good quality Belgian chocolate, I might add) and as a result have a migraine. I always try and go without medication as long as possible but trying to do paperwork in the office (VATax) during an attack makes it impossible. I believe you are going to try and eliminate ALL DAIRY from your diet and see if this helps but you also said (in a personal message) that you love citrus. Be careful, for some people even the smell of citrus is enough to trigger a migraine, maybe you should watch this as well. One last word of advice - keep a diary. Write every thing down from everything that passes your lips too when your period starts, extra stress, when you excercise and if you have been exposed to any sprays etc. By the way, the maxalt that I have just taken, took about 15 minutes for the pain to subside. The side effects for me anyway are a feeling of heaviness in my shoulders and a higher sensitivity to heat. Look forward to hearing what works for you in the future.
I did not mean to imply you have a diagnosis called "complex migraines"- I'm sorry if that's what came across. What I meant to say, is with all the symptoms you describe, it sounds like you have more going on than just a simple migraine.
Since the meclizine and diazepam seemed to help in the past, I wonder if you've ever tried something I use for my migraines (by prescription)- phenergan generic (promethazine) 25 mg. I take it along with OTC pain medicine for my migraines. I don't think it helps my P.O.T.S. any or my G.E.R.D., but God has used it many times to help with my migraines.
Regarding stroke like symptoms you describe that come with the headache and also the whooshing in your ear- if it is indeed a pulsing blood vessel, you might just ask about an MRA/MRV to take a close look at the blood vessels in your head, to look for abnormalities.
I took depakote (generic) along with voltaren daily for awhile a couple of different times trying to prevent migraines. I hope you will find it helps you! I did suffer hair loss the first time while it worked somewhat so I discontinued it, but I was willing to try it a second time later on, because I was grasping at straws. They didn't work as well the second time around.
Because you have frequent attacks, it would be really nice if they find a good fit on the preventative, along with some migraine abortive medication, in case of migraine break-through. The Maxalt Agerus mentions works for a lot of people. It didn't really work for me like Imitrex did. But you have to be careful not to take those abortives too often, because of rebound headache potential and they may start to lose effectiveness. That's why they try to find a preventative that works.