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Getting there!!!!!!


#1

Hello All
Just had 3rd round of Botox in addition to 37.5mg of Venlafaxine and 400mg of Gabapentin and im doing really good. I might jinx myself but feel about 70% better thought i was going to be trapped in this MAV nightmare forever…there is light at the end of the tunnel. I hugged my Neuro today after my treatment. She was delighted to see my progress…i never thought i would ever get to this stage …for 4 years ive been in a dark place…worst time of my life. Just need to find the other 30% now…im on week 8 of Venlafaxine and seem to be improving with the Visual Vertigo outside which was a massive problem for me
Jo x


#2

Jo,

I’ve been at 37.5 mg Venlafaxine for a couple months. Visual vertigo slowly improved. Now I mostly don’t have it. That was my biggest problem too.

Emily


#3

Hi Emily

Do you plan on staying at 37.5mg or going higher? Neuro didnt seem to want me to increase any of my meds…think she just wants me to continue as i am
Jo.


#4

I had planned on going higher but decided to stick it out at this dose. I’m glad I did because I’m doing really well. There are a lot of days now where I’m at 90%.


#5

That is incredible Emily…im so glad. Looks like we found our silver bullet!!! Dare i say that?? Always fightened incase i jinx things!!


#6

I have that same fear. Even admitting to 90% made me dizzy!


#7

Haha…funny


#8

Hi Jo, delighted to hear you doing so well and all interventions playing their part nicely. You deserve the break and well overdue this improvement.
In terms of my experience with this med it continues in a positive way. In early November I switched from 75mg immediate release to extended release and wow what a game changer for me, the breakthru daily pain in late afternoon stopped. November has been the best month in 2.5 years. I had 18 days pain free and 13 days dizzy free, really steady, eye sensitivity great and across these days I was blessed that 9 overlapped so I was 100% Crystal clear so zero sympthons. My ears are improving all the time too.
So this week I made the decision to work up to 112.5mg so that I can truly test this med, my neuro looking for 50% improvement as in crystal clear days so I’m close. No side effects coming through thankfully, finding tirating up on xl easier on system too. I’m not yet a success story but I’m very hopeful. Worst case the 112.5mg may not get me to 50% improvement, but if it gets me another 2 or 3 clear days that’ll do me and I’ll stick with that dose. On a day that’s not 100%, Im either 80 or 90% and my 80% days are usually around that time of the month, hormones are my biggest trigger.
Sharing this with you and others so you can see how the higher dose can help should at any point you need to go up.
Delighted you are doing well, keep going and look forward to a lovely xmas where you are feeling good. Take care xx


#9

Ahhh i am thrilled to hear how well you are doing…i know i have the option to go higher if i need it. I feel like i have some quality of life back. Dealing with both Chronic Daily Headache on top of 24/7 dizziness was too much to take. My life wasnt worth living most days. I can honestly say the combination of treatment and meds im now taking have saved my sanity
You take care and continue to improve…x


#10

awesome! I am at 150mg. I still rock most of the time, but i rarely have headache and the rocking is milder everyday. I am glad is working for you both @Jojo65 and @nin!


#11

Hi Jo! So glad to see you are progressing through this nightmare. Can I ask how long you noticed improvement on gab? I’ve just started taking it 300mg per night! My main complaints at the moment are full ears, dreamlike vision/spaced out and weird floaty head feeling! I get a painful migrane probably once a week.


#12

Hi Natalie
Gaba was my first drug choice as i suffered 24/7 headache and terrible right ear pain and stiff neck. Unfortunately i was supposed to go to 1800mg and couldnt tolerate it so hence all the other meds and treatments were added. It did help a lot though with the pain element initialy i would say in about 6 weeks it took my ear pain away… If you can get to a theraputic dose you may not need another med added
Good luck with it. Jo


#13

Great news Jo, so happy for you!


#15

That’s great! I’m going to give this drug 3 mths and see how I get on. Did you get the spaced out/dreamlike feeling?

I’ve heard a lot of success with venafalaxine. I’m currently on sertraline and gab.


#18

Thank you James…im even more determined to get better than ever before.


#19

I absolutely did get the spaced out dreamlike symptoms…i still do but nowhere near as bad now outside since starting Venlafaxine
GABA helps ear pain
VENLAFAXINE helps visual vertigo
BOTOX has taken my chronic headache and face pressure/ pain away which was horredous for me. I felt like my nose would burst.


#20

Gabapentin is used to treat seizures, and is much favoured for long-term treatment of chronic pain of all sorts. I’ve several friends and relatives too who’d testify to that, but according to Hain it actually works like a calcium blocker. I’ve just read a Wiki write up that suggested it always works better with another drug and particularly well with Venlafaxine which I thought you’d find of interest. Quite a useful drug obviously. Helen


#21

Thanks for that info Helen…its certainly helping me in my " cocktail" of treatment.
Hope you are well


#22

It’s the worst feeling isn’t it! I’ve heard so many ppl say how good venafalaxine is for these set of symptom! If gab doesn’t help me in that area I’m going to ask my doctor to change from sertraline to venafalaxine.


#23

Ooh thanks for that info Helen!