Discussion in 'Treatments' started by Kelli, Feb 13, 2015.
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Anyone on here tried Topamax to lessen their tinnitus?
One of the uncommon side effects listed is T. Although I think T is listed as a potential side effect on many of the drugs that have been tried in the past and have worked for some people.
Yep, the side effects look horrible.
I tried several meds in the same category, all came with side effects.
Had a full body rash with one, bladder issues with another and intense headaches.
I am DONE, trying the anti-seizure meds.
That does not mean it will happen to you, may I ask which doc suggested it?
While on them I did have more "good" days but could not handle the side effects.
Good luck, keep us posted.
I made an appt with a neurologist and he suggested it. I've had the prescription in my pocketbook for a week now. I'm scared to get it filled, honestly! I see tinnitus as a form of sensory epilepsy, so thought I'd try a neurologist route since I've done the otolaryngologist route and he offered no help other than a hearing aid to correct my hearing. My tinnitus effects my hearing. So I'm on a quest to quieten it down so I can hear.
Hey there, did you ever take Topamax and find out if it lowered your tinnitus?
I have find just this. Seems positive: http://oto.sagepub.com/content/137/2_suppl/P245.1.extract
There aren't thread about this drug in Treatment section. I have find this study that seems positive: http://oto.sagepub.com/content/137/2_suppl/P245.1.extract
Topiramate unfortunatly have serious side effects so i don't know if there is anyone that have try this drug for Tinnitus.
There are people in that study whose tinnitus got worse. I would be willing to try Trobalt instead of trying this. I can't take my T get any worse.
I have been trying Topiramate (Epitomax in France) for 3 months, maximum dosage 100 mg per day. No effect on my tinnitus, no side effect.
That is a pretty good find but why did they not state the dosage that was used!?!?!
I am not meaning to scare anyone but I want to give a warning to those who might consider this drug to be very careful playing around with this drug unless your tinnitus is especially severe and you are in a last resort situation. This drug is used for severe migraines and bad cases of epilepsy for a reason.
It can cause a host of scary side effects, neurological, cognitive, and otherwise. I've been taking topomax to control my chronic migraines for just over 3 weeks. For me, it has actually caused seizure like symptoms (flashing lights, arms and legs on autopilot, bugs crawling all over me). And from just being on 75 mg for a few days, I am getting early warning signs of glaucoma (pain in eyes, totally bloodshot eyes), a rare but dangerous side effect of topomax. I've had friends who were dizzy 24/7 and who had both cognitive and memory problems from being on this stuff, with no relief for their headaches.
Not trying to dissuade anyone from doing an experiment, but please do proceed with great caution. For the record it certainly hasn't done anything for my tinnitus and in fact I am now getting more of a low pitched humming effect since I started taking it.
Were you taking Topamax for Migraines? My neurologist just suggested it to me to prevent migraines. But me, being me, read up on it online, and heard all of the terrible side effects. Scared to try it. So any side effects?
I was prescribed topomax for migraines as well, although my 'migraines' turned out to by lyme headaches. Please read my comment above. It is a dangerous drug; some people tolerate it decently, but it is detrimental for your brain or nervous system in the long run (causes cognitive decay, memory problems, psychiatric problems, etc etc). And then there are plenty of people (me) who get the nasty, more terrifying physical or neurological side effects from taking the drug. There are a lot of FDA issued warnings and threats of recalls for some companies who make the drug because it is so bad.
I think it should only be prescribed as a last resort if you have severe, unrelenting migraines because of the host of side effects. If you still want to try it, ask your doctor to start you on a *very* small dose and slowly taper up over the course of weeks, months? My doctor made me increase 25 mg a week, which was far too rapid.
What other migraine medications have you tried so far? I'm not really educated or experienced with migraine meds, unfortunately. The only other one I have tried is pamelor (nortryptylene). It did not help my migraines (probably because, as I said, they aren't really migraines), but this is a drug with a greatly lowered risk in terms of experiencing bad side effects, and there aren't nearly as many as there are with topomax. Aside from drowsiness and a bit of weight gain, I tolerated it very well.
I was prescribed Nortiptyline but didn't want to take it due to the weight gain. ha. So I asked him for another alternative. But now I petrified to try that too. I was diagnosed with Meneire's. But I'm not even sure that is what I have. I have had tons of tests done. MRI (clean), CT scans (clean), Balance testing (2 organs in right ear not responding), hearing tests (came back low frequency hearing loss), EKGs (irregular heartbeat), etc. Everything has really pointed to Meneire's. But as of lately, I am experiencing no T, whatsoever. I may be in remission but I don't know. Other symptoms have came about. Extreme fatigue, vision loss, blurry vision, twitching eyelids, facial numbness, migraines, etc. I am seeing a neurologist but we are simply treating the most severe symptoms currently which are dizziness and migraines. So I am on Robinul for dizziness and trying to decide which migraine medication to take. I am also taking dizeapam as needed for Meneire's. It's been awful. Just want to know what's wrong with me. No answers. I keep thinking it's MS, Bell's Palsy, Brain Tumor, Lyme disease, Parkinson's, etc. But neurologist doesn't seem to think so. Says I don't look like someone who would have any of those things wrong. And MRI and CT scan were clean.
Well everything you say does not point to Meniere's disease exclusively. Could be as you said migraines, allergies, or Lyme disease. Sometimes chiari malformations or abnormalities with intracranial pressure can do those things too, but given that you have been to a neurologist and had an MRI they probably ruled those out based on test results and symptom history.
Have you been put on a migraine diet or have you tried to search for triggers/allergens in your diet? That's also a good place to start just in case your body has any sensitivities (i.e. gluten intolerance).
There are two other things I can think of. One is a perilymph fistula; but that is only possible if you visibly remember having an injury (pressure, really loud noise, physical) to the ear affected by Meniere's disease. The other is, as you thought of, lyme disease. The facial numbness is kinda raising red flags for me. I just found out I have Lyme disease, and Bell's Palsy and facial numbness can go hand in hand with lyme in the absence of other neurological explanations (and yes the MS, brain tumors, Parkinson's, were ruled out for now if your MRI and CT scans were clean).
About a year ago, I had some weird facial numbness symptoms and spells of facial neuralgia, which I thought were due to compacted wisdom teeth and my nerves being destroyed by loud bass music; in hindsight these symptoms were the beginnings of my lyme infection.
And Lyme disease does go after the inner ears; I know that first hand though as my ears are always on fire and my hearing is always changing from the slightest environmental disturbances or bodily movements. How it attacks the inner ears is something that I don't think science has come to understand yet, but I wouldn't be surprised if it produces Menieres-like symptoms. For me at least, I think either the lyme or one of the co-infections has gummed up my micro-circulation around my inner ears, as my ears are set on fire whenever blood pressure is altered suddenly.
As a word of note physicians and neurologists easily overlook lyme if just one of the tests they give you comes back negative; some Lyme tests are better than others, but all of them have a high false negative rate. To really know the truth you need to find a lyme literate doctor in your area, because they know whether it is lyme or not based on your symptomology and can conduct a far greater number of blood tests specific to the illness.
This avenue should, of course, be pursued if you have been in a region known to have ticks carrying Lyme disease (sorry, too lazy to look through details about where you are from).
Other than doing that, all I can suggest is to do any diet modification work and coordinate any with your neurologist who is treating you for the migraines, if you haven't already.
I'm really sorry that I cannot think of a different migraine med you should try. Consult with your neurologist about one with fewer side effects. All I can tell you is that you most likely want to avoid the topomax.
Hope any of this helped!
I read through your post about Meniere's disease a few (weeks?) back and about all the other symptoms you posted.
Those heart symptoms and the migraines you describe in conjunction with everything else really do point to a chronic lyme infection or another tick infection; this is something that needs to be looked into as soon as you can. Lyme can in rare cases get into your heart; it's called lyme carditis. I really don't mean to scare you an just want to help; but you definitely need to bring up the possibility of lyme or co-infections with your neurologist and make sure he/she takes you seriously.
I could be wrong and you could be experiencing a combination of Meniere's and more severe (basilar type migraines, possibly a hemiplegic migraine), but with those kind of symptoms you must rule this out.
Well thanks for the info. Yea, I don't think I am going to have the topamax filled. Just too many side effects. I'm already on edge, don't need to push myself over. I had considered Lyme disease at one point. I live in Tennessee. I did spend quite a bit of time outdoors, hiking, kayaking, etc. I am seeing a new neurologist on November 4th. I think I will definitely bring this up to him. I guess until then, I will stay on the Lipoflavnoids (they worked wonders on my T, haven't had T since the 3rd week of being on them, and trust me I am SOOOO GREATFUL that they worked, cuz it was loud). I will take valium as needed and I guess Robinul to keep the dizziness down. I may even consider going back to my eye doctor. With the eye problems I even consider glaucoma. I had my eyes checked in March and got a new prescription, but since then my vision has been blurry and my eyes have been twitching like crazy. I guess I will just keep taking aspirin or Ibprofren for the migraines. I did some research and found another migraine medication that didn't have a lot of side effects, but I think that my dr would think I was crazy if I called requesting a different medication AGAIN ha
Tennessee isn't exactly the epidemic region for lyme right now, but because of how many outdoor activities you do I think it still would have put you at risk.
I am glad you have had benefit with the lipoflavanoids for the tinnitus. The valium and robunil also sound like a good safety net for right now. Have you also tried meclizine? It's more of a vertigo than a dizziness medication, but it may be of some help.
Which migraine med were you researching? If you think it may be a good choice for you, I would go ahead and ask your neurologist about it; your doc. has the responsibility to prescribe you a medication you want to take and that is right for you and your body/situation.
Aspirin and ibuprofen are ok to use every once in a while, but they become ototoxic when they are taken continuously and could result in your T coming back. That's just why I am worried about you using them for the migraines until November.
Well, I wish you the best of luck in the next coming months. Especially with the vision and hearing losses; I can't imagine what you are going through right now. Sending my thoughts and hopes that they really find out what is going on with you and that you can get well soon .
Its too ototozic, same as everything else. The fdA and the US gov could care less.
How do you know? I certainly think it is too, but did you take it and lose hearing?
I have been taking meclazine. Just otc meclazine. Like Dramamine. I don't really notice much of a difference taking it. My Neuro put me on Robinul for now. I just read today that Robinul and Topamax has MAJOR interaction problems, which makes me wonder about this Neuro's competetance. I mean I am supposed to be taking these at the time. Good thing I listened to my intuition, huh? Just annoyed. I did read up last night on a migraine med with little side effects but can't find it now, haha Story of my life. It might have been relpax.
Yea, that's scary that there could have been an interaction. When it comes to prescription drugs always trust your gut and not always what the neurologist/practitioner tells you. I made the same mistake when I decided to take topomax for just a few weeks. A lot of information gets left out when prescribing drugs, and unfortunately it's up to the patient to fill the gaps in by looking at side effects and interactions online.
Well I hope you find the migraine medication you were looking for originally!
Just curious if anyone has taken the drug Topamax? What your experience has been. I have been prescribed Topamax for migraines associated with Meniere's. I have heard some good and some bad. Just curious.