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Am I a success story?........... maybe!

#1

Hello again to all those on the forum. I have not posted in a while, but I read the forum every night. I like to keep up with those I have come to “know” and care about.

I have only had MAV since Dec. 2011, and I am not an expert on the subject. I don’t feel qualified to give advice to others (like Kelley, who really knows what she is talking about). That is why I have not posted to other’s problems or questions. But, I have learned a lot and I know that it is different for each person. Each drug can affect us in different ways. When I was just diagnosed and so scared, crying, fearful, I wanted to hear ANYTHING from anyone, that was taking the same drug I was, that was having good result so I could copy them. I got the idea of Paxil from Scott and suggested it to Dr. Hain. He said “sure, take it”, and I started on Paxil at 2.5mg just like Scott. I figured if he was doing it, it must be right. Luckily, it DOES work for me and I am now up to 7.5mg. (I’m REALLY med sensitive) I got the Nori from Dr. Hain and he said to start very low for a month. 2.5mg. I am now up to 10mg. I started the whole thing in Dec on verapamil and am still at 180 mg and will stay there. It got rid of headache and hard spinning nausea vertigo.

I feel about 95% and have felt this way for over 2 weeks. Maybe longer. I do everything I used to do. I drive, I play golf again, I cook dinners and clean the house, I walk the doggies. Back to normal. I do get tired, but not too much out of the ordinary, and I do get some visual problems in Walmart!!! haha!, but I can do it and do it by myself. Used to be my hubby had to be with me and I even did the electric cart a few times, but no more.

I feel like a success story. I can tell you that when this began, I was sure I would NEVER find my way out, I would NEVER find a drug, I would NEVER be able to get ON a drug without side effects that were intolerable, I would NEVER stop crying my eyes out, I would NEVER be Meredith again or be happy again. All wrong!!! I kept trying, I stayed with my drugs and started so low and went so slow. That was the key, for me. Start low and go slow, real slow. I am happy again, my hubby is happy again.

I want to thank all those on this forum for helping me. I could not have achieved “success” without you, and I mean ALL of you that wrote to me, encouraged me and helped me. Finding this forum saved me. It truly saved me. Thank you, Scott, my dear, for this place to go, for all of us that have this horrible illness. I will never lose touch with all of you on this forum. I will be praying for all of you that are suffering, and hoping that you can find the answer.

I sold my house here on a lake and bought a smaller one, one story, for me and dear hubby of 46 years. We are in the process of packing up right now. Life looks promising again to me and to my family. Thank you to all!!!

#2

Wow - that’s awesome! Congrats!! (Gives some hope to those of us who’ve yet to find the right med or combination of meds… :wink: )

#3

:smiley:

What wonderful news!! The beast CAN be tamed. When you’re going through the worst of it, I know you can wonder if you’ll ever have your life back - but there IS hope. Congratulations, and thanks so much for letting us know your good news, Meredith!!

#4

Meredith, how absolutely wonderful and heartwarming to read your post. I recall how very hard things were for you not so long ago, so it’s truly uplifing to know how well you are doing. Good luck with your house move and continue to enjoy life to the full. Thank you for such a lovely update.

Brenda

#5

Meredith - your story is fantastic and am so happy to hear your have got your life back and able to enjoy life again. Sounds like you were really helped, not only by all the info here but in being able to get an appt with Dr Hain. The relatively short time (although it was incredibly stressful while you were so ill) between it all starting & being back on your feet is quite amazing.
I was helped by seeing Dr Granot, neurologist in Sydney, unfortunately it took over a year to get to see a specialist who understood the MAV thing. It shows how important it is to all MAV sufferers that this condition should be known & understood by the General Practitioners we see so they can at least refer us to a specialist who treats Migraine associated Vertigo.
This forum goes a long way in educating the ‘wider world’ about this condition so I, like you, give my heartfelt thanks to Scott and others on the forum for doing so much research and updating us on any new info.
Barb

#6

Oh Meredith! That’s such wonderful, wonderful news! I am thrilled for you!

#7

Hi Meredith,
I was about to write you a private message to hear how you were and now I read this beautiful message and my heart swells with joy! That is awesome news and I couldn’t be happier for you! Thanks for sharing your journey with us and so glad you will be keeping in touch!
XOXO
Kelley

#8

Meredith,

I am in tears right now over your terrific news. They are tears of joy as I know just how scared and helpless you felt. I can’t begin to tell you how happy I am for you that you have your life back finally!!! WOW. A big congrats

I have a few questions about your drugs as I am only one one drug and doing much better but I know I need another drug to get closer to 95% Are you actually on 2 antidepressants? Can you please spell out what med is nori because I was looking for it on dr Hains chart and couldn’t find it. I want to find it so when I talk o Dr Fife on Monday, I can ask him about it. I’m about 75-80%. I finally went back to work yesterday but the driving part was still hard.

Anyway, I am so happy for you. Now go enjoy being Meredith again and live your life to the fullest as you deserve.

Mary

#9

Hi Mary,
Thank you for your sweet letter. I started with Verapamil 120mg. That was in Dec. I got that from the Dr. in Calif, University of Calif. Irvine. He rx’d me with MAV. It helped a lot but not with the 24/7 dizzy/buzzing in the head. I still felt very very sick. I went to Dr. Hain and he put me on Paxil 2.5 for a month for anxiety, and Nortriptyline starting at 5mg for dizzy. The nortriptyline is the drug that is really making the difference for me. I hope you mention it to Dr. Fife at your upcoming appt, Mary. See what he says. I love it. Here’s what I do and this might be just for ME, but maybe it would work for others, as well. I am up to 10mg Nortriptyline, but instead of taking a 10mg pill, I take a 5mg. then wait for an hour or so, then take the other 5mg. I also do that with my Paxil. (I have all sorts of mg of pills that I have had made at the compounding pharmacy. Seems if I take too much at one time, I get a huge “shock” reaction in the brain and immediate vertigo spin ( that happened when I took 10mg Nortriptyline all at once). I am very careful to take small amounts, and let a little time go by then take the rest. I don’t know, Mary. Probably sounds ridiculous, but it seems to work for me.

Good luck when you see Dr. Fife. I will be out in Arizona on Dec 1st and stay until April 1st, and might get in to see Dr. Fife during that time.

You are on Effexor? I think and at a high dose, too. That is awesome, but one more drug might be good, but I don’t want it to mess up your feeling about 75% right now. Mary, let me know how it goes and what he puts you on, if you would. I am very interested in you and how you are doing. Hugs, hugs, to you. Meredith

#10

Dear Kelley,
How can I thank you for your interest, caring and advice??? I can never thank you enough. You are the person I think most of us “listened” to the most and trusted the most. I shall always think of you and I would like to know how you are feeling and getting along. Happiness to you and good health, Kelley. I will be in touch. Always. xoxo Meredith

#11

Great news! thanks for sharing and giving others hope!

Peace,

Jen

#12

Hey Meredith,

This is really great news and thank you for your kind words. :smiley:

Very important to have stories like yours here so that people who feel in despair over this and/ or fearful of medicines can see there’s a way out of this through your experience.

Please add your story to the Success Stories thread when you feel that the time is right. I know how we all hate feeling like we’re jinxing ourselves by doing so.

Am I correct in saying that your winning formula is the following:

7.5 mg Paxil
10 mg Nortriptyline
180 mg Verapamil

Very happy for you.
Scott

#13

Absolutely wonderful news Meredith, so happy for you and thanks for sharing your success story with us. It’s so important for readers to know that there is defintely light at the end of the tunnel.

Congratulations on selling your house and moving on with your life! :smiley:

#14

Great graet news. So happy for you.

I read somewhere, that the faster you get diagnosed and gets treatment, the faster you recover.
So happy for you!

Best from Line

1 Like
#15

Hi Scott,
I was glad to see your post to me. Yes, that seems to be the “winning combination” for ME. That said, I realize that the doses are low, compared to others here on the forum, especially gogonzalas. But, for me even a little bit seemed to help me . As a side note, I am on 10mg of Noritriptyline now. I think I might have been doing better on the 7.5mg. I have a little dizzy feeling in my head and neck, since starting the 10mg, more than I had at 7.5mg. I’ll wait a while before deciding.
I do think I was lucky,in that I was diagnosed very quickly, from a great Dr. in So. Calif. named Hamid Djillilian, who is head of the Neuro. Dept at U. of Calif. Irvine. He listened to me talk for a while, saw my hearing tests and said “You don’t have Meniere’s, you have MAV”. First time I had ever heard those words, MAV. Immediately, he put me on the vitamins and after two weeks, Verapamil120mg. That was Dec. 2011. Now it’s May 2012, and I feel close to normal, not completely, as I have bad tinitus all the time and some MAV feelings in my head, but not enough to stop me from doing things and living normally. I still eat carefully, don’t drink at all and don’t smoke. I have gained weight, from the meds, plus I seem to be hungry alot more, but I am trying to keep that under control.
I don’t think everyone has to be on very high doses to get results. Sometimes, people go UP too fast and skip right past the dose that might be good for them. For me, low and slow let me stay on Nori and Paxil, and not have side effects.
Take care of yourself, Scott. You are doing a great service with this forum. I think everyone here is so grateful to you and all are hoping that YOU are feeling well and finding a good answer for yourself.

Sincerely, Meredith

#16

Hi Meredith, how are you getting on these days?