Migraineurs Support User Group
BTM, Occular Migraine
About This Group:

A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
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BTM, Occular Migraine

Background: 2003 surgery for cervical cancer, 2005 thought to have Meniere's, over the course of the years have had frequent headaches with vertigo, tinnitus, and numbness mostly associated with the left side of my body (arm and leg). The past two and a half years it has progressively gotten worse. I have been to several neurologists, been to a neuro-opthamologist that thought I had pseudo-tumor (ruled out - did have optic neuritis), was tested for MS... I am currently on Topirimate for what was said to be seizure activity and now is said to be for Basilar-Type Migraine (BTM for short). One, I thought BTM was if you did not have any seizure activity at all (maybe I misunderstood the doctor) and... What I do not understand is that although I do have many of the symptoms of BTM, how come my headaches originate through my eye sockets? It feels like someone is taking a knife and jabbing it through the sockets and twisting... then it radiates from there. According to the information I read on BTM is that starts at the base or both sides, which makes me assume around the temples, not the eyes. Should I seek testing for something else or does this look like a good fit?
I have been on the meds for 5 weeks now and they do not seem to be working although they are trying to work on the correct dosage still. In the meantime I am having a difficult time functioning. Wake up with headaches, get dizzy, numb, tingly, vomit, can't function, can't teach my students...
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20 Comments
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875426_tn?1325532016
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.

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1656925_tn?1302280387
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


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875426_tn?1325532016
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.)
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1656925_tn?1302280387
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-)
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1552758_tn?1304932019
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 (inflammation) 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.  
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875426_tn?1325532016
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.
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1656925_tn?1302280387
I really don't like the sound of the medications, especially when you look up Depakote and the first thing is this large warning about the effects to the liver. When I started the Topamax I was told that they would be monitoring my liver and kidneys but never once tested anything since I had started taking it (although 5-6 weeks may not have been enough time?)

I would really like to know what is causing this (what the official diagnosis is) in order to properly treat it. As SurgiMenopause stated though, genetics testing could be extremely expensive and the insurance may not be willing to cover it-could be why the doctor does not send me for it. How can you officially diagnose someone with something if you can't send them for the tests?

I am going to try to stay away from all dairy and yes, even the citrus. As long as you do not tell me I have to stay away from melons, strawberries, etc too I can deal with it. Do you just take additional calcium and vitamin D to offset the lack of dairy? I am not going to start the Depakote right away anyway... I have a little time to see what, if anything, this has on my migraines. If it also reduces the stroke-like symptoms that I have...

~I have taken a Naproxen today because that seems to work better for me than Imitrex (doesn't seem to help me at all - I have to take a Naproxen afterwards), Fioricet, Ibutabs, or any OTC I have tried. I try not to take more than three per week because of the rebound headache potential and the loss of effectiveness. Advil used to help some; doesn't even touch it anymore. The only problem is it helps to numb down the pain for about two hours if that... so I take it when it gets really bad. Sometimes, unfortunately, a little too late though.

I will keep you posted.

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1656925_tn?1302280387
Hello Surgi...

1. I have tried phenergan in the past... I do not remember if it helped or not.
2. Even if you did not mean to imply a diagnosis of "complex migraines" that is what the doctor pretty much gave me instead of an official diagnosis... that I have a lot of complications with my migraines and said the main concern at this moment was to treat me for my migraines...

I am keeping my head up though (looking at all the nimbostratus clouds covering the skies...haha).
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1552758_tn?1304932019
Hi
Yes, I take additional calcium along with Magnesium as I am also menopausal. Although are you menopausal if you don't have anything anymore? Had everything removed last year because of endometrial cancer as well. Anyway, another suggestion is too also stay away from all OTC pain pills as you are right in mentioning rebound headaches. I also went this route and it is a big problem to break away from the continuous circle of headaches. The OTC pills do not help anyway although migraines sufferers seem to live in perpetual hope that they will. Another thing that I found in my twenty years of trying various things is that my migraines changed over the years. Firstly it was on the left side of my face/head for many years and lasted for 3 days and made me vomit. Then it moved to my right side, then my left side of my face including my nose used to go numb along with one arm then just when I was getting used to that, I started getting hormonal migraines then it switched again with the pain starting off in the temples!  I confused the neurologists as well (3 in fact) - I also found out that you can have mini strokes in the brain and on examining the brain scans you will find little white dots on the x-rays indicating such. Obviously this does not apply to everyone, but is my excuse for a poor memory!! I know that I am pushing maxalt, but for me this was the most wonderful medication discovered by man. It stops the pain - and in my books, this is priceless as it allowed me to get back my life and to carry on doing all the things I was supposed to be doing. When you are in control of your migraines, it makes life easier for those all around you as well, which is no small feat. I hope that all these discussions have shed some light on the subject for most of you out there and that you have found something to help you.
Thinking of you all.
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875426_tn?1325532016
Oh  no!   I went back and looked at your post, where I thought you said the doctor said you do not have complex migraines and saw you said the doctor said you have complex migraines!  I'm so sorry I mis-read what you said!  

Regarding the dietary changes- I hope you try to eliminate one thing at a time (dairy or citrus) rather than simultaneously to avoid confusion as to what might help or not.  If you notice an improvement over a couple of weeks of eliminating a food, then try re-introducing it and if you find you are getting your headaches much more frequently, there's a sign you want to make the elimination more permanent.  

Of course, re: citrus, I believe it was listed as a trigger on a migraine diary a neurologist gave me to keep or somewhere.  I had bought an orange tree and with my trying a half of orange- the first one off the tree, I got a migraine.  Was I ever disappointed!  So sometimes, it seems pretty obvious.  Had it happen to me once with a deli meat that had nitrate/nitrite in it (didn't realize that was in it until after I checked the package due to an instant migraine).

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875426_tn?1325532016
You may want to look at this thread (I was the last person to post on it thus far):
http://www.medhelp.org/user_journals/show/227110/Do-Calcium-Supplements-Boost-Heart-Attack-Risk

Even between we three on this thread, it's plain to see that what might work for one person may not work for someone else- we sure aren't one drug fits all!  I started having imitrex not working well anymore after awhile, but that may have been complicated too by taking so much prescription pain killing medication.  I went off a lot of medication for a while and did acupuncture up in Canada (different than traditional Chinese)... wasted thousands on the trip and treatments, but it was good my body at least got de-toxed from most medicine during that time.  I was treated with traditional Chinese acupunctures and some prescribed herbs back in the U.S. and one thing I noticed was some over the counter pain medication that formerly didn't touch my migraines had started helping!  I cut back on the demerol to primarily tablets and only on rare occasions as emergency medicine.
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1656925_tn?1302280387
I wanted to thank both of you for your suggestions. I started taking the melatonin and had cut out the dairy. Friday morning I woke up with just a headache through the left eye, but something I could deal with, unlike the ones I had been getting. Saturday morning I woke up with no headache at all, no pain, no numbness. It has been five days so far without any problems... feel like a new woman (or like my old self). I have not started the Depakote... why ruin a good thing? I am going to continue on this path and see how far it takes me.

I was thinking about something though... I had a history of asthma and an allergy to cow milk. Over the years I thought I had "outgrown" it like the asthma. Could this be the way it has re-manifested itself? Just a curiosity question on my part...

Anyway, thanks again!
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875426_tn?1325532016
Well, I'm so glad you are feeling better!  I know dairy can really affect sinuses & also cause problem with acid reflux.  And acid reflux can potentially cause fluid in the sinuses and middle ears one article says.  Another article mentions tyramine, an amino acid that is present when certain foods break down, can cause migraine.  Among the foods listed are yogurt, aged cheese and buttermilk.  I looked up allergy to milk symptoms and it didn't specifically mention migraine where I looked as being one of them.  See PM for more.
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875426_tn?1325532016
Oops, read further and saw that acid reflux can cause the fluid in sinuses and middle ears in kids, not adults.   But on an interesting side note, NIH reports a study where nearly half of migraneurs in one study reported diagnosed GERD or undiagnosed reflux symptoms.  (See PM if interested in that)  
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1656925_tn?1302280387
Hello Surgi...

I really do want to thank you for everything. You have done so much research for me and have helped me out so much.

I was eating yogurt just about every day (I love it) and eating cheese in sandwiches, on pizza, used on my salads, on crackers as a snack... you get the picture there. I also like my ice cream now and then. I never made the connection though.

I do have heartburn quite often and take TUMS when needed, but it isn't a daily thing (maybe two or three times a week if that) and it doesn't last for hours. I do get upset stomachs and vomit quite frequently with the migraines, but haven't done that since I stopped having the migraines... loving it!

Well, I have a meeting that starts in less than 15 minutes. Have a great evening!
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875426_tn?1325532016
Feel blessed to have been of some assistance!
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1656925_tn?1302280387
Dear SurgiMenopause,

Just wanted to let you know that I have started to forward this information on to others. So many people have asked what I did to finally get rid of the migraines, etc. Some are dealing with them while others have family members suffering from them. I told them about MedHelp and the Migraineurs support and about you, Agerus, and marileew (I believe she was the first I saw to mention the melatonin). I told them what I had been going through, the meds I had tried, and finally the cutting out all dairy (I am still eating everything else right now) and taking melatonin at night. It has been a blessing. I am so glad that God led me to this resource and you.


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875426_tn?1325532016
I'm really glad for you!  Don't be discouraged if what helped you doesn't turn out to help someone else though.  Everybody's body is different, but I'm glad you found a treatment regime that God is using to grant you relief!  Melatonin actually seemed to give me a headache when I took it in the past.  And I believe long term use of it they weren't sure of the safety of, so you might check with your doctor about that to see if that's still true.

Maybe I'll get to see some of your family members join the group?  That would be nice.
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Avatar_f_tn
I live in southern alberta,i suffer from migraines,bi polar,f/m,multiple life threatening allergies to both foods and meds.My brain has decided "not to recognise my left eye"according to nuero/optho,and was told it is because i am bi polar.I come from a family of bi polars,married a bi polar and have a strong supportive group pf people behind me.I have been diagnosed with ms when i lost the sight,by three opthomoligists,but as soon as the nuero guy heard i had bi pilar he decided i was just crazy.I ave suffered from migraines and the myths around them and ignorant doctors for over 30 years,and the eyesight happened with a migraine.
Wondering who crazier,me or the drs.
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875426_tn?1325532016
Since you lost the sight in your left eye, did they do an MRI of your brain to check for any growths that might be pressing on any optic nerves connected with that eye?  Is an MRI of the brain one of the diagnostic tools they used to diagnose you with multiple sclerosis?  Are you still blind in the left eye or does it happen in accordance with migraines, then return afterward?
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