Meds advice

Hello family… :smiley:

Some advice needed if you will.

Been on the Nori for 3.5 months now and after the first few weeks of it nearly killing me (or me going homicidal on someone’s ass) it really has made a massive improvement to my life. But not enough. No where near enough.

I seemed to be doing well at 30mg… but still had lots of symptoms etc… and plus the whole 4 weeks I was on 30mg, I was also in Abu Dhabi (and as Kelley puts it in a loving, nurturing, relaxing environment) so much so that Mav was at 10% most days. Completely bearable.

Since I’ve been back in the UK I’ve pushed up to 40mg (1.5 wks at that dose) and come back to work a few days a week etc - but I feel generally rotten again (not as bad as before the Nori - hell no).

My brain zaps are every other day again now with some killer ones happening in the night (I didnt have any in AD), I feel slightly more rocky/rocking, heightened dizzies, and the general malaise and crapness feeling being the norm with the odd good day instead of the other way round.

I’m seeing Dr S for my followup on Weds 22nd June.

Questions:

Do you think my body is disagreeing with 40mg? My bf Paul thinks this is the case. I dont know if it is or if it’s environment factors screwing with me (work, generally busier and more stress as opposed to zero anything in AD).

Do you have any recommendations on a drug that would work well alongside the Nori to calm my brain down? I really feel my brain is jacked up, ramped up and high voltage (no headache) and it needs to calm the feck down!!! Dr S doesnt like me using the V but I do when I get desperate.

I think I should stay on the 40mg Nori until I at least see Dr S to see if he thinks that doesage is right/wrong but what do you guys think?

I really believe in my heart I need another drug. I dont feel the Nori is capable of controlling these horrendous brain zaps no matter how high I get. It has done wonders but it’s not my wonder drug.

Peace out, love The Mup x

I am definitely no pro when it comes to the meds involved in treating this, but it does sound like every time you increase a dosage, it takes time for your body/brain to get used to it. (sounds similar to my complaints in earlier posts) Unfortunatley for us, it seems as if we have to play “the waiting game” as nothing gives us instantaneous relief. I say if the doc said to increase it and get to a certain dose, I would continue as prescribed. That way when you see him on the 22nd he will be able to advise you if you will need to cut back the dose or not. If you aren’t comfortable with that, give him a call and see if this is a normal response.
I am on a beta blocker as well as ami; the beta blocker was the 1st drug I tried and by the 4th week on it, I was actually feeling pretty good. At this point I don’t think I have any side effects from either med. I am just having symptoms of MAV breaking through.
I have also been going for VRT and neck massages twice a week, which I have to be honest makes me feel soooo much better. I was concerned as I had heard that VRT can make you feel worse. I have not found that to be the case at all. My neck was a mess per PT, extremely tight and full of knots. I never knew otherwise! (not had any neck pain)
This gets so tiring after a while, but I guess positive attitude is key! Hope this helps!
Jen

Hi Muppo, we will just miss each other , I see him on the 28. I would definatey up the dosage now . You can go up to 70. I would suggest pregabalin (lyrica) which I suspect he will add it in anyway since he seems to favour the drug. Best of luck.

HI Mup,
The nori is mostly hitting the norephinephrine and histamine receptors I think, with some also hitting serotonin. You can try to add Buspar, which hits serotonin very selectively and is an easy off/on drug if it doesn’t work out. You might want to consider Effexor or Cymbalta, as they are both meds that hit the same receptors as Nori, but with less side effects for MOST people…as they are newer drugs.
My doctor is very lenient with allowing benzos in low doses, and as you now, the klonopin is very good for me. IF he doesn’t wnat you on it, maybe find another doc who will…it makes a huge difference with a low, low amount. Also, periactin has shown some promise.
The Lyrica is a good one, but both nori and lyrica are both known weight offenders…
xo
Kelley

Hi Kelley et all

Well my appointment is nearly here and I cant believe I’m actually EXCITED to be seeing Dr S tomorrow!!

I’ll be interested in what he decides to offer me and if indeed he goes with the Lyrica. I know I need a second drug. The Nori is just not doing enough and even though it has done a lot - every day is still a sh*t fight in some way.

Kelley - re your comment on Cymbalta - why do you think that would be good in having two drugs that hit the same receptors? I would’ve thought I need a drug that hits a different area to give me an all round attack on this thing? I dont know though - just wondering?

Also you’ve mentioned before Lamictal (spelling?) - what is the SP with this drug?

xx

Hey Mup,
Sorry if I was confusing…
if the Nori doesn’t do enough, you might want to SWITCH to Cymbalta or Effexor (even though Fex doesn’t hit norephinephrine till higher doses)…since you’ve gotten some good results with the NOri…
as far as adding, I would consider an anticonvulsant (lamictal) or maybe the mood stabilizers like Lyrica, Neurontin (almost same as Lyrica, but older version)…or try the periactin, and a low dose benzo…I don’t think Dr. S a fan of benzos…
Interested to see what he says. He’ll probably want you to go UP on Nori…most docs push the current med when things aren’t doing enough…
(my combo hits al receptors…cymbalta=NE and Sero, Klonopin=GABA, phenergan hits histamine as well as a low dopamine antagonist)…works great…especially if you like weight gain…NOT! :open_mouth:
Kelley

Good luck for tomorrow Mupps. will be thinking about you and hoping it goes really well :slight_smile:

Hi all

Well I had my 10 min follow-up with Dr S yesterday and he said:

You’re where I would expect you to be at this point in time.
We need to start VRT and CBT
Keep pushing up 5mg every 3 weeks but dont go over 75mg. He feels he hasnt seen all that this drug might be capable of for me as I’m only at 40mg. He said he’s seen people reach the dose they need and BAM, like magic, they are soooo much better… he feels 40mg is too low to know if this might happen to me.
He therefore will not be looking to add another drug until he sees me in 4 months time.
I told him my brain zap/electric shocks are not getting any easier or better and they can have me backflip out the bed! He said he has some other theories on what might be causing them but again, he’s not going to think about that until he knows for 100% whether the Nori will take care of it or not the higher I get.

He said clearly my brain is still very irritable (I feel like I have an ants nest in the back of my head) and I have to treat this like a huge wound that takes a long time to heal.

I didnt tell him I’ve come back to work 3 days a week etc as I could tell it wouldnt fly with him. He didnt ask me either if I was still necking the Valium! But, I’m not, only on REALLY bad days.

My brain feels so tight today, like the back of my hair is being pulled. I feel brain damaged most days. :?

However, on a more positive note, I’ve got GOLDEN CIRCLE TICKETS to see BON JOVI in Hyde Park on Saturday… No amount of MAV can keep me away!!!

:smiley: