For a few months I had lost my fight. Recently I had a few apptâs and signed up on this board. Well, I feel the fight in me coming back.
So if you could have an appt with any doctor, who would it be? I feel like making one last attempt, and seeing someone that really
understands all of this. Im in the US. Willing to go wherever.
My problem is Im on 10mg of nortrip. It helps me, so I dont want to discontine it. Plus I was told not to.
I have read on here, than many of the women get worse around that time. So do I !! My doctor even gave me bc pills to see if
it would help. I went off of them months ago, when I trialled Topamax. Also I read on here how serotonin plays a role in migraine and
hormones. I researched that, and well it does very much. Sorry I wasnât not believing what I read, just wanted to look for myself.
Also I cannot remember who said what. I have read so many posts, just remember tidbits. So again my problem is I feel like maybe
I should be hitting serotonin a bit harder. But do not want to stop the nortrip, and nobody wants to add anything to it.
So do I fly somewhere? Or do I add herb like SJW or 5-htp (abrev?) I know these types of herbs affect bc pills, but not sure in what
way. Im not taking them for the obvious reason, just to see if things get balanced out.
As you can see, a lot of people have looked at this stringâŚbut no one has responded.
And the reason is not because we dislike you or a holding a grudge ala âThe Hatfields & McCoysââŚ
The reason isâŚwe really donât know or it comes down to patient preference.
What I can tell you isâŚI was pointed to Dr. F. Owen Black in Portland, Oregon. His main diagnosis is Perilymph Fistuala requiring surgery on your inner ear. I went ahead with the surgeryâŚalas, to no avail.
Next I went to Mayo Clinic. That Neuro-Otologist catch-all diagnosis was Vestibular Neuronitis, which could be correct with a Vestibular Rehab regime. AgainâŚa lost cause and no help.
Then, I took a trip to UCLA to see Dr. Robert BalohâŚwho diagnosed MAV.
I hold no ill will to the doctors and their diagnosis each of them had for me. If only this was as simple as the business that I am inâŚHeart Transplantation, where we know without a doubt the problem and how to fix it!!!
I think (matter of factâŚI know) I have learned more from my peers on the board vs any physician THAT HAS NOT HAD TO DEAL WITH THIS PERSONALLY!
Ask away, document your condition in a chronological orderly fashion, list all of your symptoms and let the experts here try to help.
A slight disclaimerâŚyou do need to have full inner-ear testing to determine if there is a problem with your vestibular systemâŚas MAV becomes a diagnosis of exclusion.
Thanks for the reply. I was dx with vest. migraine/anxiety.
My trouble is, doctor said I have that, but doesnât seem to know how to treat it. I guess I shouldnât say that,
he gave me nortrip. and thats helped. But other than that, I feel like Im on my own, as he doesnât want to add anything to it.
I just want a doctor that is good with meds, or will let me dictate, kind of like yours, lets you take the reigns. I need someone
with strong knowledge and understanding. Just not finding it. Thanks. Kayera
I think you just need a goto oto-neurologist who specializes in migraine treatment.
Another option is someone who specializes in MAV like Dr. Hain in Chicago. He seems to be pretty prominent in the field. Whether that is due to success or marketing Iâm not sure. I do not know anything directly about him nor can I recommend him since I 've never been treated by him, but I found his site useful:
Some people on this board have experience with him. His tendency to use Effexor is somewhat controversial as there hasnât been much to show it is effective outside of anecdotal evidence.
My doctor seems to be following a similar flowchart to the chart Hain lists, though we skpped the diet part and he flipped the order of verapamil and the nortriptyline. My doc also seems to pump the dosages up higher quicker.
I think the issue is that with this disorder more that most, the doctor is 100% reliant on the patient for everything. There are no tests to run. There is no blood to draw. There is nothing to measure. There is pretty much just asking you if you are feeling better. For example, I almost made the mistake of stopping my treatment too early. I was doing a little bit better on the Nori, but I think that was mostly because I had identified my triggers and had stopped the constant 24/7 migraine cycle I had been in. I told my doc I was somewhat better, so he just left me on Nori for 6 months. I probably didnât get any better for the last 4 of those months before I finally told him I wanted to try something else. I should have been more aggressive, but it is hard to know what what to do, both for the doc and for you. This is NOT an exact science.
I have been on his site. Its chalk full of info. I thought about seeing him. Im just afraid he would want to take me off the nortrip.
and put me on effexor.
I tell my doc about other docs and people on here and
he told me he tells people to stay off the internet and group conversations. So ya, thatâs where I am. I have seen him and called
a about 4 times, and he just isnât budging with adding anything. Its been 5 months on Nortript, so Im due to do something.
One thing I donât think will get you better is a doctor who is rigid, but I do understand where he is coming from with the âdonât go on the internetâ thing. Since the only thing that really works is trying a medication and sticking with it for 2 to 3 months, it is hard for a doc if a patient wants to change meds every week because they read something on the internet.
However you said youâre only on 10mg of Nori right? 5 months on 10mg of Nori is, IMO, an incredibly conservative treatment profile. 5 months into my treatment Iâd already tried and rejected Verapamil and I was up to at least 75mg of Nori.
You need to be patient and consistent, but there is a difference between that and being static. If the 10mg of Nori hasnât gotten you where you want to be you either need to go to a higher dose or try a different medication. IMO youâve gotten the maximum benefit you are going to see from that dosage of Nori. You have to change something. EIther the dosage, or the medication.
I will, of course, state emphatically that I am NOT a doctor. But that is my experience with Nortriptyline. I would be quite surprised if it suddenly kicked in and started doing something new after 5 months at the same dosage. Maybe someone else here has a different experience.
Is there a reason that you havent pushed up from the 10mgs? How do you know that a higher dose of the Nori isnt going to nail your symptoms? I had to get to 75mg before my doctor and I agreed that, itâs done a lot, but nowhere near enough and thatâs when we added the Gabapentin. Plus I have to have Valium when I have a bad attack or Iâd simply drop dead. :shock:
I agree with Jamie that a rigid doctor is not necessarily going to help and I also had the same thing about âgoing on the internetâ from my parents, but the truth of the matter is, because I went on the internet and found this site, and this site is the ONLY reason that I found a specialist doctor and learned of the different drug options.
Have you looked to see if there are any Neuro-otologists in your area? Where in the USA do you live? Are you just relying on your relationship with the GP or have you at least been reviewed by a neurologist?
If you have been on 10mgs Nori for a while, you need to be pushing up and if your doctor is playing hardball with you then you need to play hardball back and explain in no uncertain terms that YOU ARE NOT MAKING A FULL (or at least 90%) RECOVERY! You need to cast your net far and wide.
When I went to my first apt with the DR. at the University of Washington a few weeks ago he gave me bunch of info on Mav and actually referred me to this site. I had found it on my own a few weeks prior to that but it was nice to know they recommended it as well.
No sense in staying on that nori, or worrying about going to a new doctor that will want you to go off of it if it is not working, right?
Sounds like 10 mg nori is not doing you right. You need to up the dose, or kick it to the curb and try another med. I thought you mentioned you had been given the option of Celexa but didnât try? Or am I confusing you with another person, sorry, I do that sometimes :oops:
Celexa worked for me at first, and it is fairly easy to tolerate. You can start low at 2.5 mg if needed and work your way up in small increments. Iâm on my 4th medâyouâve got to keep plugging away until you find what works best for you. I believe others on here have had success with Celexa as well.
Doctors tell you to stay off the internet with good reason(s). 1 - you can scare yourself shitless diagnosing yourself (or having people diagnose you over the internet) with all kinds of weird and wacky illlnesses. Especially for something like migraine, which has symptoms which can mimic just about anything thatâs a very valid concern. You can find and confirm that you have just about anything if you look hard enough on the internet. A bit like astrology (âohhhh, thatâs such a Pisces quality!â) âohhh, you definitely sound like you have Liberian fruglebanger disorder!â etc. 2 - Even if you know for a fact your issue is migraine, by surfing the net youâll come across all sorts of âmiracleâ cures which will do nothing but empty your wallet and prolong your misery.
Having said all that, mvertigo is, of course, the exception . As youâll have noticed this forum is evidence based and rigorous. Many of the migraine docs actually direct their patients here.
As for who is the best doctor for you - thereâs heaps of good ones in the US. Where are you?
You might want to have a browse through this thread too: viewforum.php?f=32
Muppo- hello and thank you. I have tried to go up on the nortrip. but I was just to dizzy. 10mg has helped me a lot. I would say Im good on most days, great on a few out of the month, and okay on the rest. If that makes sense. That is why I was told not to go looking for a different medication. I totally agree. Especially after reading all the trials on here. I think I would be a fool to give up the good days I have. But I want to turn more good days into great and more okay into good. Great meaning- normal.
I live in Vancouver, Washington. Im from Oregon though. I have to throw that in because im a Oregonian not a Washingtonian. :lol:
I kept my regular GP in Oregon. Just moved to Wa about 2 yrs ago. Coming back to Ore in a few months. Big Smile.
I have seen many doctors. 3 neurologist, 2 Entâs and 2 Oto/Neurotologist. Im not chasing docâs. They actually give up on me. Except the one I currently see now. The Oto/Neurot. But he told me I have Migraine Assoicated Vertigo. Then says I dont. but it remains the Dx in my chart notes. So even he is not sure.
That is why I want to see someone that knows MAV and knows how to treat it. I tried talking to him about this website and Dr Hainâs website and that is when he told me to stay off the internet. Victoria, I think if maybe he came on here he would see its a reputable site.
Main symptoms are:
Dizziness
Increased Dizziness and Headaches before cycle
Chronic Fatigue
Sad
Anxiety
Vision feels different, cant explain that- Like at the store, it gets overwhelming to look at so much stuff. I can do regular grocery shopping though.
mild sore throat- off/on
Muffled ears with tv sound- not often at all, once in a while
Maybe Im asking for to much. Maybe this is the best its going to get, Im really not sure. I just cant help but push for that 90%. I would take it!
You donât have to go off of the Nori to try other medications. There are of course some that you canât try at the same time, specifically the other anti-depressants. But I believe most of the meds in the other classes (the anticonvulsants and beta blockers) can usually be combined with it. So if you had a doc willing to experiment, you should be able to do so without giving up the benefits you have gotten from the Nori. I started taking Topamax without going off Nori first.
. As youâll have noticed this forum is evidence based and rigorous. Many of the migraine docs actually direct their patients here.