Getting better :)

Thanks for providing up date! Good for you! Glad to hear all is going well!

WONDERFUL NEWS!!! thank you for sharing! that is great too only 10 mg such a small dose. Are you working now? Were you able to work before? had you tried any other mav meds besides ami?

It was great to read your inspirational posts. Thank you! Iā€™m so sorry you had to endure thyroid cancer but sounds like the prognosis is good, thankfully! Congratulations on your 6 months! My husband had thyroid cancer in 2003 and we just celebrated 10 years with no reoccurrence and I wish the same for you as well. :stuck_out_tongue:
I do have a question about the elavil, did it give you any symptoms when you first started it or did it seem to help you immediately? And also, is it the same class of drug as say, celexa? Iā€™d like to ask my neuro if I can try it too.

amitriptyline is a tricyclic antidepressant like nortriptyline. celexa is an ssri- so they are in different classes. ami and nori are very common mav meds to try and i would imagine have much higher success rates in treating mav than celexa.

thanks for the update.

im glad things are going wellā€¦i have also had some luck after starting a new drug(verapimil)ā€¦i still get headaches but at least im not dizzy.

I have a question regarding your symptoms that you mentioned ā€œgetting betterā€. Most notably the palinopsia (my first visual symptom) and the flashing lights. Iā€™m not really sure what you mean by flashing lights, but I have a whole host of visual symptoms myself, and still looking for a way to get better. I also have the imbalance problems which you speak ofā€¦ I tried Nori a few years ago when my problems were mostly balance and vestibular based (the only visual symptoms I had was Palinopsia). I got up to 100mgs of Nori for about 9 months, but it didnā€™t do much for any of my symptoms. Once I got off the Nori, loads of new visual symptoms creeped in, and for two years now I have been battling them. What exactly were your visual symptoms?

ā€” Begin quote from ā€œsarahdā€

WONDERFUL NEWS!!! thank you for sharing! that is great too only 10 mg such a small dose. Are you working now? Were you able to work before? had you tried any other mav meds besides ami?

ā€” End quote

Yes 10 mg is a small dose! I didnā€™t think it would work, after 12 years of vertigo, but it does! I am working now indeed. My vertigo was really bad when it first started in 2002, and i didnā€™t work for a few months. Then it was on and off and it got worse in 2011, thatā€™s when my neurologist thought it may be some kind of bizarre migraine phenomenon since i had weird visual symptoms as well as headaches. He irst prescribed Flunarizine but i didnā€™t wanna try it because of the potential extrapyramidal symptoms so he suggested ami and it worked! Not perfect, but a MAJOR improvement in my quality of life.I had tried Serc in the past but it did nothingā€¦ what worked best was ibuprofen and doctors it was really weird that it stopped my vertigo attacksā€¦ i wish they had figured out before that it could be migraines, butā€¦ better now then never! :slight_smile:

ā€” Begin quote from ā€œWhirli67ā€

It was great to read your inspirational posts. Thank you! Iā€™m so sorry you had to endure thyroid cancer but sounds like the prognosis is good, thankfully! Congratulations on your 6 months! My husband had thyroid cancer in 2003 and we just celebrated 10 years with no reoccurrence and I wish the same for you as well. :stuck_out_tongue:
I do have a question about the elavil, did it give you any symptoms when you first started it or did it seem to help you immediately? And also, is it the same class of drug as say, celexa? Iā€™d like to ask my neuro if I can try it too.

ā€” End quote

10 years cancer-free? That is GREAT!! I do hope i will have the same chance! Thank you for your wishes :slight_smile:

elavil gave me some symptoms when i first started it: i was really tired (still am but only the first 20 minutes after i wake upā€¦ the kind of fatigue you feel when when you wake up and you know youā€™re sick, but then if you get up, after a couple of minutes, you feel well and in good shape. My mouth was very very dry the first two weeks but it came back to normal after. My heartbeat was faster but it went back to normal as well. Nothing else i think. However, the good stuff came quickly: the first day i coul get up the couch and turn towards the hallway and feel no dizziness or unbalanceā€¦ that was a first in YEARSā€¦ i didnā€™t even remember how it felt not to feel dizzy when changing rooms! Also, the visual symptoms decreased, but that took a couple of weeks, gradually. I wish you good luckā€¦ hopefully it works for you as well as it does for me! :slight_smile:

ā€” Begin quote from ā€œammarettoā€

thanks for the update.

im glad things are going wellā€¦i have also had some luck after starting a new drug(verapimil)ā€¦i still get headaches but at least im not dizzy.

ā€” End quote

Good! The headaches took some time to decrease if i remember correctly.

ā€” Begin quote from ā€œawalkerphoenixā€

I have a question regarding your symptoms that you mentioned ā€œgetting betterā€. Most notably the palinopsia (my first visual symptom) and the flashing lights. Iā€™m not really sure what you mean by flashing lights, but I have a whole host of visual symptoms myself, and still looking for a way to get better. I also have the imbalance problems which you speak ofā€¦ I tried Nori a few years ago when my problems were mostly balance and vestibular based (the only visual symptoms I had was Palinopsia). I got up to 100mgs of Nori for about 9 months, but it didnā€™t do much for any of my symptoms. Once I got off the Nori, loads of new visual symptoms creeped in, and for two years now I have been battling them. What exactly were your visual symptoms?

ā€” End quote

I had palinopsia, i had little dots of lights and black dots appearing all the time (black during the day and when i went to sleep i had little spots of light flashingā€¦ very annoying but everyone kept telling me i was probably focusing too much on them and that probablement everyone had them. Well, when i started elavil they stopped completely! Palinopsia is still there, but a lot less frequent and disturbing.

What visual symptoms do you have? I can tell you if i had that too!

The worst symptoms I have is the Blue Field Entoptic Phenomenon. It sounds a little like the spots you were seeing, but they are impossible to see when your eyes are closed. They say it is normal, and like you, something I am focusing on too much. Here is some info on it:

eye-floaters.us/what-is-the-blue ā€¦ henomenon/

http://www.youtube.com/v/(http://www.google.com/imgres?imgurl=http://files.abovetopsecret.com/images/member/3c9f45856a03.gif&imgrefurl=http://www.abovetopsecret.com/forum/thread765203/pg2&h=557&w=500&sz=306&tbnid=XpOLoRlPXf-QgM:&tbnh=90&tbnw=81&zoom=1&usg=__Po0BuNcmsHrSGoJcQ7Rxp6GpH8Q=&docid=GdjgmfgoIIgg4M&sa=X&ei=TzygUdKHGYHtiQLI-ICQCw&ved=0CFcQ9QEwAw&dur=639)

I see this BFEP all over the sky, on TV and computer monitors and any bright surface (white, grey or tan) when outside. Itā€™s enough to drive someone insaneā€¦

Other than that I have palinopsia (negative after images), ghosting, floaters and extreme light sensitivity. On top of that some of the usual complaints people on the forum have; brain fog, imbalance, heavy head, stiff neck etcā€¦

BTWā€¦ all of these symptoms are 24/7. Constant. When I am indoors in cotrolled lighting things are much better. Outside things are a complete disaster.

Thanks for your help!

Yesā€¦ i had all of those!

The worse for me in terms of pallinopsia was when i was outdoors at night and saw a trail of light (from the car lights, the street posts, etc.) that made me feel very unbalanced and i didnā€™t want to go out at night in the last months before i started elavil.

I also (and still do a little bit) had lots of problems with neon lights in shoping centers. They still trigger migraines when i spend a lot of time in a shopping center or a store with lots of bright lights and mirrors, so i tend to avoid those. :slight_smile:

Light sensitivity, it took time for it to decreaseā€¦ it was better about 3 weeks after i started elavil.

let me know if you have more questions :slight_smile:

oh! and i had a lot of that before (and it stopped with elavil): upload.wikimedia.org/wikipedia/c ā€¦ zation.gif

But you are saying that you for sure had the BFEP? You had thousands of fireflies (phosphenes) flying around all the time when you looked at the sky? This is important to me, because these things ruin my daily life.

This is an old post from a forum where other people with visuals like me suffer. This girl Tara claimed to be cured, but was ridiculed by many because no one could believe it was that simpleā€¦

thosewithvisualsnow.yuku.com/rep ā€¦ eply-33337

What was your titration on Elavil?

I didnā€™t have it all the time like you but yes i did have it, and I do have it a lot less now.

I am certainly not saying elavil is the perfect cure for everything and everyoneā€¦ just telling my story. :slight_smile:

I really believe everyone is different and needs to try to find the best medication for them. My sister has vertigo and migraines and elavil worked for her, but she couldnā€™t stand the side effects so she started trying topamax.

What does titration mean (sorry in case you havenā€™t already noticed, English is not my first languageā€¦ :wink: ) Does it mean how many mg? I take 10 mg.

Yes, titration is how much you started on and went up to.

I tried Nortriptyline (also a TCA) a few years ago when I just had dizziness problems. When I came off of it all the visual stuff started, so I have been weary of trying another TCA, but itā€™s interesting that 2 people now have said that Elavil helped them.

I dream of the day when I can look at the sky again and just enjoy the blueā€¦

I hope you will soon :slight_smile:

glad you are feeling better sovertigo x

hello one and all: hereā€™s a post detailing how I managed to cure my palinopsia: How I cured my Palinopsia - Success Stories & Positivity šŸ•Š - mvertigo.org vestibular disorders support forum