Well a year ago I was a normal gal. Then I got vertigo while in bed. I have been to many doctors and have many many if not all tests. All came back fine.
I was diagnosed with anxiety and Chronic dizziness. I was also later diagnosed with a Vestibular Migraine.
Im dizzy all the time. Some days its better, some days its worse. But always there.
Im on 10mg on nortriptyline since January. I tried to move up to 20 and could not. I added verpamil to it, and it gave me a headache, and fatigue.
I tried zoloft which made me get a headache as well.(this was when I was told anxiety) Which is funny, as I do not get headaches. No family history of headaches. Well, my grandparents 3 out of the 4 did. After I started taking all the different medications, I then started getting about 1 maybe 2 headaches a month.
I do know I have anxiety and wonder if this is all from anxiety. I have many of the symptoms that relate to that. I did have a very bad, very sad and stressful year before this happened.
Im not one to post on boards really. As I tried before, and no one talked back to me. I have noticed that you all talk quite often. Im not really reaching out for help. I just like to talk and help others. As for me, Im not sure what more I can do. I have accepted the fact that this is my new life, and I cry a lot.
But so far have given up going to doctors and such. They all look at me like im crazy.
My symptoms: dizzy, feel like Im moving. have stress and anxiety and depressed (for other reason) a couple of headaches a month. Not sure if they are migraines or not. I dont have all the criteria for them and have not had one for sure that I know of. So I dont know.
Hello kayera,
Welcome to the forum. I’m sure people on this forum WILL answer you and communicate with you. It sounds like that is what you are needing right now. I have found the people on this forum are the best people in the world. Period!!
I am not clear if you said that you have stopped taking any medication? Stopped going to any Dr.?? Also, you said that you had a vertigo while in bed. That almost sounds like BPPV, not MAV. I have both. Lucky me!
The most important thing to do, is find the right Dr. Someone that knows about MAV and BPPV. I found the best Dr. certainly in the midwest, that knows ALL about MAV and BPPV. His name is Timothy Hain and he is in Chicago. I drove 7 hours to go have an appt with him. I was with him all day, off and on, and he put me on meds and fixed BPPV in one ear. I’m on 10mg Nortriptyline, like you, but to tell you the truth, I think it’s too much. I felt better on 7.5mg. and am considering going back to that. I have been on Verapamil 180 since Jan.and it helped me with headache and vertigo spinning.
Have you ever had a very fast, hard spinning vertigo followed by getting “sick”? I am not too computer savy, but if SCOTT is reading this, maybe he can send you the website to Chicago Dizzy Clinic??? Thanks, Scott!! He is our leader and the founder of this wonderful forum. I’m sorry you are having stress and depression. I’m sure all of us have had it and still have it. You are not alone. sincerely, Meredith
Kayera, a year ago last June I was completely normal. But I was having an incredibly stressful year. My first daugher was due any day. I was working huge long days for my company. It was probably the most stressful time of my life.
One day I was working on my computer, and essentially I broke. The room started to feel like I was on a giant ship out to sea. I thought there was a gas leak in my office and I was getting high off the fumes. I went to eye doctors thinking my eyesight has gone. I thought I was going nuts. It took me months to get a diagnosis of migraine, and even that was only after some very costly tests, and was still only a guess. I’d told them I couldn’t have migraines. I’d never had bad headaches. Not ever. Not even 1 single headache in my life that I would have classified as a migraine. So how could I have migraines?
I spent many months since them going on and off several different medications trying to get better. Some I thought maybe worked a liitle bit. Some didn’t work at all. I But then I recently started taking Topamax and it seems to be working really REALLY well.
I may be a lucky one. If the Topamax works for me, it will have only taken me a year to figure this thing out. Many people take longer than a year to get it figured out. But the key is to keep trying. I don’t know that your vertigo is migraine related. But just because you haven’t had painful headaches in the past doesn’t mean that it isn’t. It is something that is definitely worth further exploration, especially since you’ve been diagnosed with migraine. And I’ve been on 150mg of nortriptyline and a large dose of Verapimil with very little relief, so don’t think that just because those two meds didn’t work for you that there aren’t other options. It can be very hard to keep positive in the face of yet another long ramp up on yet another med that might not work. But doing nothing will definitely not work.
Definitely talk with Scott. He has great resources he can point you at if you feel like your local doctors aren’t giving you the medical advice you need. But FYI, my doctor started me with Verapamil and then Nortriptyline, so it sounds like whoever you were working with was trying some similar things.
Kayera, has the nori helped at all with the anxiety or depression? Maybe another antidepressant would help (other than Zoloft) and also help the MAV symptoms? I had success with Celexa when this all started for me, and I also had bad postpartum anxiety/depression. It can be hit or miss with meds and which ones work for you. It does sound like you could use some help with the anxiety/depression, which in turn could help the dizziness. I’ve been there myself!!
Are your symptoms all the time or do you get relief? You will find a lot of helpful people here.
My symptoms are all the time. Somedays are mild. I feel better for a few hours in the morning.
The nortrip. does help with the dizziness, anxiety um not to sure, I think a little maybe. I was told if the zoloft gave headaches, then
most likely all those type of meds will. He did say that celexa was the easiest to tolerate and did give me 10 to try. But I never did.
I shortly after got the nortrip so I never tried. I mentioned that some folks use 2 meds and the same time. But wont do that.
I do see one doc. I have given up hope looking for new docs. I actually saw him today and did allergy testing at his request. Came up with
a moderate cat allergy and a mild dog. Nothing else. Asked me if I have either and I do, one of each. He didn’t seem to concerned about it.
I forgot I do have some ear stuff. Not sure how to describe it. Feels like its maybe fluttering, or something. With the tv the other night.
Does not happen to often. Oh and I went to the mall yesterday. I was really dizzy inside. So bright and loud. I felt better the moment I
walked outside. I read some of you have a hard time at stores. Im okay there, so Im not sure what that was all about.
Thank you for the responses, it was nice to see.
Kayera,
I don’t know that cat or dog allergies are linked to migraine at all. I’ve had cat allergies my whole life and I don’t know of any link.
The dizziness at malls is a common symptom of migraines, as is feeling better in the morning.
Personally if I were you I wouldn’t give up on trying to find a medication that will help you. But you’re going to have to find something your body can tolerate. It might take a lot of frustrating trial and error to get to the right one.
The doctor doesn’t think the cat allergy is significant to migraines, but the dizziness, possibly.
And I forgot to say that I did PT for the vertigo I developed by turning in bed. The PT moves cured that.
Okay, I was always told that migraines you usually wake up with and tension type headaches come on during the day.
10mg of nortrip. does help me. I tried 20 before and I was more dizzy. I only gave it like 2 days though. Doctor just today
said that normally if you get side effects you will feel it in the morning, and since Im good in the morning, then probably
not the extra dose of the medicine those 2 days. I dont know, my OBGYN just put me back on BC pills. I went off of them
because my neurologist told me I had to when I started topamax last year. She said I could be having dizzy spells due to
hormones being screwed up. Its been a he says she says thing for a while. That I dont know what to think or believe. I
had my prescription for my birth control pills for 3 weeks now I have been afraid to try them, because my doctor says they
may make my migraine worse, if that is indeed what I have. But he is not to sure. He flip flops every appt. After that unsuccessful
appt this morning. I will try them!
Oh I forgot, spinning lady, how do you take only 7.5 mg of nortriptyline? I asked if they have 15mg and was told only 10 then 20 and 25 and forgot after that.
My biggest problem with migraine treatment is that it was impossible to prove that I had migraines. My doctor told me he couldn’t really do anymore than guess that I had them. He just couldn’t find anything else to explain my symptoms. I never had any head pain, but my dizziness was very often brought on by bright artificial light, and light sensitivity is very often linked to migraine. He had done a brain MRI and there was nothing unusual. So absent a tumor, migraine was the next best guess.
I’m honestly not sure I was 100% sold that this was all being caused by migraines until the topamax kicked in earlier this week. Nearly 1 year after this first hit me. So this is a slow process.
I think one thing you have to be is patient. You can’t be bouncing around and changing a lot of things at once. You have to slowly try one medicine, give it a reasonable chance of working (unless it is incapacitating you with side effects) and then move on to something else if it is not working. I took Verapamil for about 5 or 6 weeks without it helping me before i moved on to Nori. I must have been on Nori for 6 months on varying doses up to 150mg. It helped just enough for me to keep trying, but not enough for me to really feel better. It was enough for me to be able to go out in public as long as I kept my sunglasses handy at all times, so that was something.
Once I was sure the Nori wasn’t going to fix me, we moved onto the Topamax about 20-24 days ago and it looks like that is helping. But it took about 8 months of slow, methodical, patient work to get here. Some days the medication made me feel like crap, like when I started Topamax. That was the WORST. But it was worth it. There were days I thought it would never work and I would never be better. In fact, there were days I was convinced of it. And that can be a very scary place. You just have to tell youself that there are more options to try and that you’re going to keep trying them all until you find one that works, no matter how frustrating or hard it is.
Everyone is different. I know my symptoms were not nearly as bad as a lot of peoples, and I know they aren’t as bad as yours because mine have never been constant. All I’m saying is that to try and treat this thing you have to be patient, methodical, and consistent. Otherwise you won’t be able to figure out what medication will work for you. There are so many different ones to try that I think most migraine docs will tell you they can usually find one that will help you out in some way.
Hi kayera,
I have found a compounding pharmacy and they make me drugs!!! lol I am very med sensitive and if I try going up on a drug 5mg or 10mg, it proves too much, and I am SO dizzy, I can’t tolerate it. So, I go up 2.5 mg. I have 2.5 mg nori, and also have 2.5 Paxil. It is more expensive, though. I have to get a rx from my Dr. for 2.5 Nori and Paxil, and give it to the pharmacist. Works for me! Meredith
I was wondering how the heck you were going up and down by all these tiny 2.5mg increments. My doc is moving me around by 10 & 25 mg increments all the time and you are talking about 2.5mg here and there and I’m thinking “how is that even possible??”
Hi Jamie,
Well, I can see where you were wondering about my 2.5 mg!!! I actually got the idea from Scott, who was on 2.5 Paxil, and he thinks it helps him. I was intrigued about the low dose. I asked Dr. Hain in Chicago about a low dose for me, and he liked the idea. It definitely helps me, but I don’t really NEED any more than that. I am at 5mg now of Paxil. The Nortriptyline got up to 10mg, but was too much, I think, as I was not at all feeling as well as I was on 7.5mg. So I am reducing it now back to 7.5mg. I am one of those people that is med sensitive, alchohol sensitive ( a one beer gal) etc.etc. I don’t need much to affect me. A Compounding pharmacy is very expensive, as they Make the drug there and it takes a while. You do need a rx, tho, for the low dose.
I just can’t even believe how high some people go on some meds AND how fast they go UP on them. It would not work for me at all. Hope you are ok and feeling well? Meredith
Well I’m glad you found a solution. That must be horribly frustrating to have the standard dosage units be 10mg or 25mg and have that be way too much of a change for your system.
I seem to be one of the other types. I barely noticed a difference between 50mg and 150mg of Nortriptyline. Yeah, I got a little more constipated, and the other side effects got a bit worse too, but otherwise I felt no different at all.
I’m having very good luck with the Topamax so far. Tonight was a bit of a setback, in that it was only the 4th best day of the last year I’ve had. In all seriousness I am doing great. I don’t think the Topamax is completely supressing the migraines completely yet, but it seems to have supressed about 95% of the vertigo, which was my main issue. I’m getting some heavy head feeling and a feeling of constriction around my temples tonight, but I’ll take that over what I used to get anyday.
I was toying with staying at 75mg after how good I felt on it for the last few days, but after tonight I’m going to go up to 100mg to make sure I give the Topamax a full shot at shutting this stuff down. I want to try the full standard dose out for a while and see how it works.
Hi TCS,
Guess I don’t know your name, except for Gonzaga, but I have read lots of your posts. You are NOT alien and are definitely human, and a funny human, at that. I always get a good chuckle reading your posts of how high you went up and how fast, and nothing happened. Wow, I would be dead and buried, with your doses. Hope you find the answer you can start feeling better, but don’t stop writing on here, as I love reading “you”, Plus, good luck with the DNA thing. haha don’t know what it is, exactly, but hope it works for you. I will be looking for your posts about the results… hugs, Meredith
Jamie and Todd, isn’t crazy how different we all are. ?
I know I only gave verpamil and zoloft a few weeks, but I got a headache within 2/3 days of starting it, most everyday.
I stuck with nortrip for months now. I do like it, doesn’t give me any trouble. Nobody wants to add anything to it. Doc did once the verpamil, but that was a one time thing. Because I asked about adding a serotonin med to it, after reading various posts on here. But wont, so not sure where to go from here.
Different doctor maybe? Thinking I may need to do that. As my plan from the doc is to continue nortrip. and stay away from triggers. Which the mall is the only one I really know of, and its not everytime. I recall I was there during the busy xmas season and had no troubles. Oh and the topamax trial. I know that can take months, I did it for almost 7 weeks, and felt so much better once I came off of it. I thought I was being patient and giving stuff a fair shot, maybe not. Kayera.
I will say that if I had been on Topamax for 7 weeks and it was still making me feel bad I probably would have been giving it up too. It made me feel like crap for about 6 days, then faded. Comes back every time I increase the dose but only lasts 5 or 6 days.
