Well, saw another Neuro--short visit, but when told my symptoms and having Meniere's--minus vertigo--he is prescribing Topamax for the 'vestibular migraine' symptoms. Sounds like something I've heard about here. I told him I'd been told about 'silent migraine syndrome' and it really sounds like the same thing. All the migraine symptoms without the pain. It can cause some troubling symptoms but hoping I can tolerate them. STarting on low dose. I'll let you know if it helps this ongoing lightheaded/head pressure, dizzy feeling I have and sensitivity to light, noise. Etc. Another try--so we'll see.
The neurologist sounds like he knows what he is doing. I'm glad he recognized MAV symptoms which is also called vestibular migraines, I have always felt that might be part of what you were dealing with. I hope the topomax works for you, I know it does for many with MAV from the mvertigo forums, but from what I read you need to titrate up very slowly.. Good luck and keep us posted...fingers crossed!
Thanks Vicki--I thought is was another name for MAV--even though I don't have vertigo anymore, since the shunt surgery. So, we'll see. Yes he said to go slowly with it and I think he wrote it to increase every 3 weeks or so, up to a certain dosage. Hoping I can tolerate the side effects--I am 'not good with meds'!
I hope so too! I know where you are coming from I'm not good with meds either, I react or get side effects to so many. I will be keeping my fingers crossed for you!
I hope the topomax works for you, yanksgirl. I have a friend who takes it daily as a migraine preventative. It took her a long time to adjust to it, she titrated more slowly than usual, and now her body is ok with it. She hasn't had a migraine for a long time. Hang in there, fingers crossed for you.
Very happy that your dr is open to try something new. It definitely sounds like this could be the answer for you!
Thanks guys! I have just heard my insurance has approved it, so guess it will be arriving in the mail soon. I have to say, the first impression I had of this new Neuro doctor was not good. He seemed to question as to why I thought I needed to see a Neurologist. And mentioned I'd seen two in the past. Like---'why are you coming again, if they didn't help'? But, we began to talk, and I explained my problems/symptoms, and he asked what meds the other Neuro doctor put me on--I said, Nortriptyline. He said that was the 'baby' in medicine for migraines. I told him I started on the lowest dose and couldn't tolerate the side effects. AFter a very 'minor' exam (again I thought, this is not going to be good), he asked a few more questions, then went out of the room. Came back in and said he was going to prescribe the lowest dose of the Topamax--I think 100 mg. To take at bedtime and after two weeks, if I was tolerating it, to increase it to 2 tablets at bedtime. My real concern is I hope it helps me sleep--but doesn't give me even worse dreams than I already get when I take anything at bedtime. Even atenolol for high b/p and A-fib, affected them. My Cardio doctor said some patients report bad dreams from that med. So he advised me to take it earlier in the day. I did and it seemed to help. I still dream--and some 'strange ones' but not scary ones. However, had one last night and it woke me and made me so anxious--and I don't even remember it. That happens, they waken me, and for a few mins. I'm troubled, then I fall asleep--takes awhile, and later I don't remember the particulars of them, but they make me feel 'anxious' alot of the next day! Could be just my age and anxiety issues due to all this 'stuff'! So, hoping this new med doesn't add to that! Told me to call him if I had problems and otherwise to see him in 3 mos.!
Vicki or anyone who has taken Topamax! I have only taken this drug for two nights---25 mg. to start at bedtime for the awful head pressure/light headedness due to 'vestibular migraine's' all from Meniere's. Yesterday I was 'dizzy' but I could still go about doing my house cleaning--just felt light headed and would sit every now and then and it eased by afternoon. Today it is really bad! I am so dizzy and nauseated. I have been sitting back in my recliner 'alot' and hoping it will ease like yesterday by noon or so. Sitting here it is a 'bit better' as I'm typing but when I get up to walk I feel 'off balance' a bit. Is this just a common side effect and should I just 'tough it out' or call the doctor? I truly want to take this and see if it will help-as nothing else has. I'm supposed to start two tablets at bedtime after one week--so it will depend on how I do the rest of this week. Or should I call my doctor and let him know--or just give my body a chance to adjust. So frustrating!! I also am taking 1/2 of a lowest dose xanax-- up to 3 times a day--and wonder if that adds to this but it's the only way I can 'cope' with this and the other stuff too. All have been approved by my doctor and the pharmacist. Any thoughts? thanks
aww so sorry to hear this yanksgirl. I never took it but from reading the mvertigo.org forum posts (MAV forum) which I am a member of this drug has many side effects in the beginning. If you are concerned I would call your doctor and check with him to see if this is just an adjustment period. This way you will know one way or the other. Keep us posted and HUGS!!!
I was told that was a common side effect, so I expected that. I have had such shaking--like an anxiety feeling all day and feeling cold (so I'm all bundled up), and very nauseated and dizzy when I get up and move about. Waiting for a call from my doctor's office now. I sure had hopes of this helping with my symptoms--of head pressure and ongoing light headedness due to vestibular migraine. But--I have always had problems with meds. So this is not a surprise, just a real disappointment!
Hang in there Yanksgirl until you hear back from your doctor and if by chance this med is not for you there are several others and classes of migraine meds. Don't give up hope!!
Vicki--thank--doctor's office returned my call--not him, the secretary. Said he said to continue the meds for 2 to 3 more weeks. Didn't even realize I had been told to double it this Sunday. When I told her that she checked and he said to stay on the low dose and give it that amount of time. I told her I"d had really two very bad days and felt awful, but would give it a few more days, but if I continued to have bad symptoms, I 'would stop the medication'! She said, 'if you do please call and let us know'! I said I would do that! I felt like I didn't really get to explain to 'him' how it was affecting me and he may have just thought--oh the usual symptoms folks have--no big deal. And maybe they aren't. I am going to give it a try. Right now--and it's almost 7 p.m. here, I am not nauseated but still soooo dizzy and just feel wiped out from the day. Have sat in my chair with a blanket over me and in a fleece robe (and fully clothed) due to feeling chilled and now I have a mild headache. But, the symptoms are some better. Of course I will be taking another pill about 9:00 p.m. so we'll see. I'll let you know. Thanks for the encouragement.
sounds like a good plan! I hope as the next few days go by the side effects get less and less. Keep us posted!
I'd be interested to know how you're doing with them too. Coincidentally I forgot I had this and have started taking this too. I have to take 1/4 of a pill for 10 days (not sure how many grams it is, he gave me them without a prescription) then take 1/2 a pill for another 10 days then 3/4's etc. Maybe finally I'll see if this all from MAV or not. Hope you respond well with it yanksgirl.
Well, Prozeal and Vicki--this has 'not' been the answer for me. I tried it for only a week and was sooooo nervous/shaky and even developed the weird 'anxiety type' issues (which I have already due to the Meniere's) but wanted to cry 'alot' and was shaky and cold--felt like I was having a 'chill' and very impatient--having trouble concentrating. The whole 'nine yards'. So, after 9 days, I stopped it--that was a week ago. It's taking it awhile to leave my system now. Yesterday was some better and today I'm dizzy (nothing new) but not the extreme issues I mentioned above. So, I can only assume it was due to the new medication. I did alot of research on it and one of the things mentioned was 'mental issues' like anxiety, inability to concentrate, depression that worsens. I certainly don't need any of that. I am going to let the doctor know--and have an appt. in 3 mos. with him but probably will cancel that unless he wants to see me sooner or prescribes another med. I really am not sure I want any more meds. I'm at the point of just 'dealing with whatever' without any more attempts at meds. I feel worse when I try them and so, will just have to see how I do after awhile. Will let you guys know. Good luch Prozeal with yours--hope it works for you. Let us know.
thanks for the update but so sorry to hear it made you feel so lousy. I have read a lot about topomx and it does have some strong side effects and many get them. The ironic part is people with MAV tend to also be medication sensitive. Its a catch 22 I am very med sensitive as well so I can just imagine how bad this was for you. There are other meds, more gentle with less side effects but I know where you are coming from about not dealing with them. Hang in there yanksgirl and HUGS