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Boslee2008 07-11-2008 05:51 PM

Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disorder)
I am looking to hear from others who have constant ear pressure, or who have HAD constant ear pressure due to MAV (migraine associated vertigo) and who either still have it, or who have gotten better from it.

Is there any suspicion that the pressure is causing MORE dizziness or do you feel this is just an annoying benign symptom? Every time I get a head cold,...EVERY TIME, ears get clogged and congested and before this stupid MAV nonsense, the stuffiness NEVER caused dizziness, so I assume that the pressure is just benign in that its there, and if it were relieved by ventilation tubes (ENT tried it on one side, and the pressure was relieved, but the dizziness was not, but i wonder what would have happened if he did both sides to level me off), that i would only have relief from the pressure, and nothing else. Anyone have any experience with this?? Just another annoying MAV symptom that I DON'T need, on top of all the dizziness and motion intolerance that doesnt' respond to the meds I take. Lovely!!


charlotte67 07-12-2008 05:42 AM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
I have had ear pressure on and off with mav. It can make me feel a bit more off..prob. because it makes my head feel funny with the ears blocked. That said it would ramp up when I pushed myself physically...Now I rarely get it...never had it prior to all this garbage...:cool:

Boslee2008 07-12-2008 09:55 AM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
thanks Charlotee! How long did you suffer with the ear pressure before it finally eased up and what do you attribute the improvement to? Did your medication(s) clear up the ears?? What are you taking for your MAV? Thanks again. I greatly appreciate the feedback!


alexiwildchild 07-12-2008 01:48 PM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
hey rich! as you know, i am still unsure of my diagnosis lol...however at the beginning of this junk for me...i had severe ear pressure/popping/and pain. it was so horrible i would use vicks vaporrub around my ears when i got in a hot bath to make them feel somewhat better (a suggestion from someone on here if i remember correctly hah). anyway, i think it took at least 6-8 months for it to gradually disappear--it was worse the first 4-5 months though...being a horrible symptom. i still have some popping...but not much pressure just every once in a while--mostly if i'm having a headache. don't know if that helps...hope you're doing a tad better! how are the meds goin?

Boslee2008 07-12-2008 03:28 PM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
Thanks Alexi. I am still pretty debilitated and it will be 6 months at the end of July. I seem to have signs of "stablizing" a bit, but I would not call that an improvement, and I can still barely function. The Topamax is making me very tired. Other than that, no side-effects. I am looking into gettin on another med to help the migraine, and to give me some energy. Maybe an SSRI. Thanks again!


Will66 07-13-2008 10:15 AM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
I'm new here and found you becasue i'm having the same issues. I was having what they tell me are migrains just about every day. I was also having spells that they tell me are focal seizures that have graduated to visiting me around the 10th day of each month now. I've been on Tomomax since Sept. of 07. Tingling hands and feet and lose of appetite were first side effects I noticed from the 50mg twice per day dose I was taking. Then in late mid December the dose was increased to 100 bid to see if the focals could be stopped. Second week of January I was hit with the worst sinus infection of my life. I had been in a dusty environment and I'm no stranger to sinus infections but this one was bad. I was placed on a strong antibiotic for 10 days and it seemed to clear it up along with a CT scan to show the infection. Mid February I was again down with another sinus infection. Another round of antibiotics and my head was clear. By Good Friday I was again infected. A different medication was given this time. My left ear stopped up the first week of April and I was given an appointment with ENT. I was told my sinuses were inflamed but not showing signs of infections and was given a spray to treat this. During this treatment the left ear stopped up as well. Another round of a different Antibiotic and a new CT scan. The pressure from my ears was not fun at all. when the evening thunder storms would show up my head would go crazy. It is like a huge clamp with someone twisting it tighter. I still think it's the topomax so I've cut back. I feel better but my ears are still stopped up it's just not as bad. IF i can gain this much relief in this next week perhaps they will soon open back up. I just hope my tubes are not damaged beyond self repair. Best wishes to all.

Boslee2008 07-13-2008 11:53 AM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
Thanks for your response. What were the symptoms of your focal seizures just out of curiosity?

Personally, I do not think the topamax has caused your ears to clog up. It sounds like the inflammation from the migraines, as well as the drying effect from the antibiotics is responsible for inflamming your eustactian tubes, making them sticky and non-operational. That would clog them.

Also, have you also been this susceptible to sinus infections?? I have read information that says Topamax can make you more susceptible to upper respiriatory infections but i don't know if that equates to sinus infection. I think it could as for me, even at 50mg, I notice that the Topamax makes me very mucousy and it even gives me a hard time breathing, and i'm always blowing my nose and coughing stuff out of my lungs. So perhaps the topamax is causing more mucous in your sinuses, and allowing a better breeding ground for bugs??? I'm just guesing here but trying to use some logic to get to the bottom of it. Unfortunately, if you cut back on the topamax, the seizures could come back, so you are in a catch-22. You could always ask your neurologist to swtich to a different anti-convulsant like depakote, if you think the topamax could be causing issues. I'm prepared to continue to trek on with it for a while more, to see if I can at LEAST get to the 75-100mg, but my goal is to get it all in at bedtime, and not twice a day, as i can't handle the fatigue as it is.

Does the sedation improve?? I've been at 50mg for a week now and I'm still sleeping most of the day. Thanks!


Will66 07-13-2008 01:33 PM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
The focals ranged from anywhere from a bad smell or taste to a felling of panic and helplessness. Some are harder to describe other than calling them weird feelings. As fare as the topamax stopping them, it has not. I have already been on depakote and WILL NOT take that again. I've had a few sinus infections in my life yes. Haveing 4 in 7 months ........... never. You may be correct that the topamax isnt' causing the ear issue, however the topamax is the only thing new in my lifestyle. If it were the antibiotic that caused it, three months have gone without the antibiotics and it hasn't corrected. You are on 50mg per day? I've been on 200 mg for 7 months and the topamax itself dries me out. Only this week have I been able to produce what I call a normal discharge. And per directions I force as much water as I can to avoid issues. If it has not directly caused the problem. I feel that it has created the situation that has caused it.

Boslee2008 07-13-2008 04:14 PM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
Lets back up for a second. How were you diagnosed with these focal seizures? EEG I hope?? If the Topamax is not controlling them, you need to try something else yes? 200mg is a lot of Topamax and there are lots of other meds out there. what happened with the depakote? I certainly know what you mean about drying you out. That's how I feel at only 50mg, I need a hot shower and a lot of humidity to feel right. I'm going to stick out the Topamax to at least the 75mg if possible, and MAYBE the 100mg, but if the benefits don't outweight the problems, I'm going to lower it back down to 50mg, where I feel I have gotten SOME benefit with less side-effect, and simply add a few more preventatives to help me out. IF I can get stable on a combination of other meds, maybe I can phase out the topamax. I don't like it because of the drying effect, so I DO understand what you mean!


Will66 07-13-2008 04:23 PM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
Yep EEG. Depakot pretty much turned my personality upside down. Had no effect on my migrains after the first month. I couldn't think, simple task mistified me. I lost energy and wanted to lay aroudn all day. I'm going to talk to my Dr. about keppra perhaps I should have tried this in the beginning

Boslee2008 07-13-2008 05:33 PM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
I think I know what is causing your uprising in sinus infections and I have some suggestions in how to deal with them. Hopefully, with switching to Keppra, it won't be a problem, but from what I understand, pretty much all of the anticonvulsants have a "drying out" action.

Your body is naturally "lubricated" in places like your lungs, your mouth, and inside your nose, and this lubrication acts as a defense mechanism againt bacteria, viruses and other bugs. When we get a cold, these lubrications thicken in response to the bug, and white blood cells, natural killer cells, and lymphocytes (among other things ) are sent to the area to fight the infection. Hence, we get a stuffed up nose, or we start coughing up phlem, as the mucous is actually gathering up the bugs and getting them out of our system. Here is your problem.........The topamax is drying up your natural lubrication system and when a bug takes hold, it spirals out of control and you get sick,...BAD!! You have to be put on antibiotics, which not only kill the bad bugs, but also kill the good bugs that help you out, so you have a catch-22 problem there. This makes you even more vulnerable for the next attack. This is why you keep getting sick over and over agian during the winter. It's like having your castle burned down, and not rebuilding it between attacks. The enemy just runs over you at will!!

So, what do you do about it?? well, it's not a PERFECT solution but I would handle this from two aspects. First, ESPECIALLY in the winter when the air starts to get dry outside, and the air is especially dry inside your house, get some humidifiers and make sure that at least the air inside your house is humid. Run a hot shower and either get in the shower or at least get into the steam to get the steam up into your nasal passages. Then, use a Saline Nasal Mist throughout the day to keep your nasal passages somewhat lubricated without using medications that just dry you out. when going outside (during the winter months), this might not LOOk so great lol, but wear those mouth wraps so that the humidity stays locked into your mouth and nasal area. This will keep your sinuses from drying out as well. Make sure you sleep with a humidifier near your bed. Personally, I take a hot shower every single night and bath in the steam because I KNOW the topamax is drying me out, even at a modest 50mg.

The other part is to BUILD your immune system as high as you can get it, without interfering with the Topamax. I already know that you can't take GLA, a type of fatty acid with Topamax. That's the type of fat in Primrose oil so don't use that. But Fish oil (EPA/DHA) builds the immune system, as well as lubricates your lungs/sinuses, etc. A good multi vitamin (but make sure it doesn't have any GLA or Evening Primrose Oil in it) helps cover you all around. A good probiotic is important as this helps build back up the good bacteria that are killed from the antibiotic. actually more than 70% of your immune system is located in and around your digestive system so what you eat, as well as the bacterial balance in your digestive system is very important. Echinacea is ok to take with Topamax, as I take it during the winter months, and some extra zinc to give me immune system a boost. I start it at the end of September, and I take it through March. I also take 5000IU's of Vitamin D every day during the winter months. My testing showed very low levels of vitamin D so that level is ok for me. Without testing, you shouldn't really go higher than 2000IU of vitamin D a day. Check with your doctor though before starting it. There are other things you can use as well, but these are the only CONFIRMED items that i KNOW do not interfere with Topamax. If you want to find out if there are other things that can be taken with topamax, that's fine. Products like Colostrum, Olive Leaf Extract, Astralagus, AG-Immune, these are all very good, but I have no idea if they are safe to take with Topamax. I also don't know if it's ok to take any of the items I mentioned with your seizure disorder so you have to check with your doctor. Getting enough sleep vs getting enough exercise, not subjecting yourself to extreme variations in temperature if at all possible, using the germ wipes on your doorknobs, lightswithches, computer, TV's and phones a few times a week, as well as washing your hand every time you come in from outdoors, should really go a long way to helping you reduce your sinus problems that are coming from the Topamax. Oh, reducing your stress and not WORRYING so much about getting a sinus infection or cold,.. that's a BIG help. Stress all by itself will lower your immune system and will make you sick. I know, I had a bad cold just 4 weeks ago, all because of stress, and it was in the middle of the summer, so it can strike anytime. It's just less likely to happen in the summer because our defenses are naturally higher in the summer. I hope this info helps you. If you use it, I believe it will.


kdny6 08-03-2008 11:16 AM

Re: Ear Pressure with MAV?? (No need to respond if you have an actual inner ear disor
I get the ear pressure too . . .it sometimes comes on suddenly for no apparent reason. Do you think it's related to the barometric pressure?
I've always had trouble with my ears when I fly, especially landing.
But I haven't flown in months, and I feel as though I am landing on a daily basis.

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