Possible Basilar Migraine

This is a long question.....this has been going on for four years.  I have seen many ENT's and now I am seeing a Neurologist.  It first started with just a aural fullness and slight ringing in the right ear four years ago.  The first ENT thought it was allergies but when nothing worked shipped me off to someone new.  The second ENT thought that I had eustachian tube dysfunction and did a surgery that scrapped all my sinus cavaties.  That didn't work.  He shipped me off to someone new who thought that I had Meneries because I was starting to get headaches and vertigo episodes.  The ringing in the right ear got worse in year three.  The hearing tests are now showing almost 60% hearing loss in the right ear.  He gives me the transtympanic shots of corticosteriods in the right ear for vertigo, but he has sent me off to another ENT in Baltimore.  They are thinking that it is not Meneries and it is more Migraine related that anything but can't figure out the hearing loss and the ringing in the the right ear.  So, I have been going to a Neurologist.  He has me on Topamax.  The migraines has quieted down but still occur.  The only issues I have, is that it feels like my heart is ready to jump out of my chest.  I talked with him the other day, and even though I have been on this for three months, he doesn't know if it is good to change medications.
Again, this has been going on for 4 years and I am getting tired of seeing doctor after doctor.  Right know I have aural fullness in the right ear, ringing in the right ear, and I get headaches at least once to twice a week.  I have some neck pain to go along with it.

Anyone out there have any suggestions???

[marileew]

Hi migraineman1,

I am sorry to hear that you have been suffering with this for 4 years. I hope you find a successful treatment plan soon.

If you find that the Topamax is helping, but it is also giving you side-effects, then you have to weigh the pros and cons of the medication to decide if you want to stay on it or try another medication. All medications can have side-effects, but when you are looking for the "right" medication for you, it is important that the side-effects are not disruptive and most importantly, that they are not worse than the symptoms you are treating them for.

Many people will choose to stay on medication that has side-effects if the side-effects are not worse than the migraine symptoms. This is a choice that only you and your doctor can make. You may find that the side-effects go away if you have been on the medication long enough too, so you might want to give it a bit longer to see if the side-effects go down a bit. Also, how much Topamax are you taking? The regular full dose after titration is 100mg. For migraines, Topamax is mainly effective around 100mg and more will cause very undesirable side-effects and less has not been proven statistically effective. But, I have met a few people on MedHelp who take less than 100mg/day and find that it is still very effective for them. With Topamax, side-effects are very much dose-related. If your doctor does not think that changing your medication is a good idea, you may want to ask him if lowering your dose might be a possibility.

As far as I am concerned, when it comes to migraines, with most medications 3 months is a fairly good indicator of if the medication is going to help. If you don't notice any change within 3 months, or any reduction of side-effects, you may want to try another medication. But, I was on Topamax for about 2 years, and for me the side-effects went away in the first year but did persist longer than 3 months... so although 3 months should be a good indicator, it is not always the case either. Still, if you find the side-effects to be disruptive, disabling, or you cannot tolerate them, then you may want to try explaining that to your doctor again. I find that sometimes I have had to explain how I was feeling on a number of occasions before doctors have understood the severity of a situation, so I wouldn't hesitate to bring this up again with your doctor at any point.

There are lots of different migraine preventative medications out there: 3 main classes, multiple medications within each class, + a few less prescribed medications as well. So, if you decide to stop taking the Topamax, there are still lots of medications to choose from. One of the main classes of medication are Beta Blockers. If you find your resting heart rate is over 100, or if you continue to find that your heart feels like it is racing, then beta blockers may be able to stop this (they are supposed to stop symptoms like that). You could talk to your doctor about introducing a beta blocker into your preventative treatment plan, or you could suggest replacing the Topamax with a beta blocker entirely. Some studies suggest that Topamax works better when no other preventative medications are used. Still, you might find that this is not the case with you, and the Topamax may stay effective even with the addition of a beta blocker.

I hope some of that information helps. I am not as familiar with Basilar Migraine, so I am sorry that I couldn't be of more help. I know at least one person on MedHelp who has over-lapping symptoms as you, so maybe they will see this and comment as well. I know that vertigo is one of the main symptoms of Basilar Migraine, and ringing in the ears is quite a common symptom too. The hearing loss is puzzling (at least I think it is, again, I don't know as much as Basilar Migraine)... but hopefully others on MedHelp will be able to give you some suggests about the hearing loss.

- marilee

[markb67]

Many medications cause or exacerbate tinnitus.  I don't know if Topamax is one of them.  I was on it for about a week in June and another week in July, but I don't recall seeing tinnitus as a listed side effect.  A good resource for tinnitus is the American Tinnitus Association (www.ata.org).  You can get information on tinnitus, Meniere's, and other hearing-related conditions as well as a list of ototoxic drugs.

Regarding the increase in your tinnitus, keep in mind that hearing loss will make the tinnitus sound louder because there's less other noise that can distract from, or mask, the tinnitus.  Of course, tinnitus can actually get louder without hearing loss.  I've had it for 25 years, and I've noticed an increase over the past six months or so.  (I should probably get another hearing test from an audiologist to see if there's any increased hearing loss).

[migraineman1]

I thank you for your input.  Any information will help.  The doctor actually called yesterday and is now thinking to do an LP and see if there is anything unusal in the spinal fluid.  So, next Friday I will endure the pain and have tons of fun.

I too wish these migraines would end.  They have been a nusaince for the last year and I no longer want them.  My next visit to the Neurologist will be a long disucssion about either a MRA, CT scan, or MRI....because something has to wrong for these to all of a sudden to start happening.  If for 33 years they never were around, and they started over the last year....something obviously is going on inside my thick skull.  Now, we need to figue out what that might be???!!!