Some advice please

Hello,

I usually post over at m.org but have been here lurking and reading all of the wonderful information that you have here.
Hi Scott!

I was initially diagnosed with atypical Menieres about 2 years ago. I have been leaning more and more towards a MAV diagnosis as is my ENT. I am going to talk to her on Monday.
I am currently taking Beta Serc 24 mg 3x a day. I also started Verapamil 240 mg about 2 months ago.
I don’t know if it is the holiday stress and or the weather but I have been having a really bad time as of late. This morning I woke up off balance and took a sedative and laid back down.
I was doing so well 2 months with nothing happening. I have been having lots of symptoms these past few weeks.
My vertigo has never lasted too long, knock on wood. I usually get short spins. My symptoms seem to be MAV like. Unless I am one of the unlucky ones who has both MAV and Menieres. The anxiety that comes out of nowhere is so bizarre. Not panic attacks but like I can’t relax.
I had migraines with aura from the age of around 12 until my late 20s. I went on amitriptyline and went into therapy and they went away. I am in my 50s now.
Now I am getting auras but no headache thank the lord.

My question for all you smart people is what do you think of Nortriptyline?
I am not seeing a neurologist, the wait is forever. I am lucky in that my GP has so far been very accommodating with letting me try things.
I discussed the ami last visit with him. He likes to try one thing at a time which makes sense. If I ditched the Serc are Nortriptyline and Verapamil compatible? Or should I go off the Verapamil and just do the Nort alone?
I know I need to clean my diet up and that would probably be a big help. However, I really haven’t noticed any particular food triggers.

Thanks so much!
James

HI James,
Yes, you could do them all together, as some people have quite complicated cocktails. Obviously the more meds, the more you are opening up yourself to side effects, so less would be ideal. If I were you, I would factor in a low dose Nort at like 10mg, which many doctors start their migraine patients on for preventative measures. Give it a while…since you responded well to the Amitriptyline, then you should do well. That might be enough…then if you need to…titrate up slowly on the Nort. At that time you can gauge how you do on both meds…if you feel you can handle it, then come down slowly off Verapamil. The trick is to make sure you make slow moves with the brain…my doctor says to “sneak up on it”…lol

Have you been to Dr. Timothy Hain’s website? He has a med flowchart that tells which meds he prefers to use, and also that 2 classes of meds is sometimes needed.

He would be one ot the top MAV doctors in the country. Most of the experts recommend Nort as one of their first choices.
Good luck!
Kelley

Hi James,

I dont know how long you have been taking the Serc but I wouldnt just ditch it. I have been on it for so many years I cant remember now, but I know that when I cut down drastically the vertigo gets worse. Also, when I was hospitalized overnight after a severe vertigo attack after an ECOG, the nurse there said, a lot of people end up back there with bad vertigo from coming off their Serc.

I too was diagnosed with Menieres, then endolymphatic hydrops, then inner ear lesion, then basilar migraine then vestibular migraine, I dont know whether I have both, I do know I had motion sickness as a child and the zig zag lights with bad heads as a teenager and I definitely have had bad migraines lasting 3 days, but I have a lot of ear complaints too so I keep on with the Serc and add what I like to it.

Christine

Hi James,
I agree with Christine about staying on the Serc. I have been taking 16mg three times a day since last summer and I find it helpful. If I forget to take a dose I notice that I am dizzier. I have had no side effects from it - Lisa

Hey James!

Great to see you on mvertigo but sorry to hear things have been flaring up. I know you’re a great support over at mm.org and it would be great to have you in this neck of the woods too. :slight_smile:

Interesting how you are now suspecting MAV. MAV is the great chamelion and is capable of fooling the sharpest minds out there so very good that you are zeroing in on this. It took me about 2.5 years to finally get it. I was in migraine denial most of the time. :lol:

Your previous history of migraine with aura certainly makes it VERY likely that migraine is the root cause of your dizziness or at least a large part of the problem. I’m not sure about your case in full. Why did they think there was an MM component? Is there any fluctuating, progressive hearing loss?

I think that considering you once responded well to Ami that you should equally do well with Nori and possibly with fewer side effects. As other have mentioned, it is generally kicked off at 10 mg and the volume turned up slowly over the following weeks.

Really make sure you get the triggers removed if you suspect foods etc. Even if you’re on a med, constant exposure to a significant trigger may render it useless.

— Begin quote from ____

The anxiety that comes out of nowhere is so bizarre. Not panic attacks but like I can’t relax.

— End quote

I completely relate to this.

Best … Scott 8)

i wonder why my last dr never gave me SERC he talked about it but then decided after another round of tests that i didn’t have menieres. with my horrible allergies i would think it maybe would have helped me. he kept telling me i had hydrops and therefore had meniere’s but then decided I didn’t Still not totally convinced 100% that i have MaV but probably but allergies are the big trigger for me.

sorry you arej going through a rough time. i am too right now. Not happy about it at all.

SERC is like an antihistimine isn’t it?

chris

Thank you all for your help!
I really appreciate your advice.
This morning the temp has gone up and I feel pretty good.Have been having a really rough winter so far here in Sweden.

Kelley I like the advice to sneak up on the brain.I have looked at Dr.Hain’s website and have written to him previously as well.
The Serc,never have been sure that it is helping me,but I guess one doesn’t always know until they stop.

Chris,good to cyber see you!
Serc is a Histamine,not an anti.Don’t know how it would help with allergies.

Scott,
I have hearing loss that was pretty rapid,I also kind of started in earnest with drop attacks,which is when the Meniere’s diagnosis kind of kicked in.My ent has always said atypical.Since taking the Verapamil my hearing has gone up 20% across the board.
They thought at first that the hearing loss was possibly auto immune.
The anxiety thing is really bizarre and it takes some work to get a handle on it.Not always successful!
Thanks again.
Will let you know and update if I start to take the Nort.
James