Well I’m nearing the end of week 4 of 1.5mg on sandomigran. I thought some things were slightly improving some days (mainly my positional swimmy head when I lay flat on an ear) but today that symptom is back full force. After 2 weeks of it just disappearing! I have still had daily dizzies though. My next trial is topamax but just interested to hear how many also trialled sando and it didn’t work, but found a different med? How many have you all trialled. I had hoped (like many of you I’m sure) that the sando may be my saviour. Starting to accept it may not be. Look forwarding to hearing from u!
I got really lucky and hit the jackpot on med trial number 2. Zoloft was a shocker and then Cipramil (15 mg) saved my life back in early 2004. Of course I had to give that one up after about 4 years because of the headaches and neck pain it was causing. I then went through a whole gamut of off-label migraine drugs which didn’t pan out until I found a low dose of Aropax (2.5 mg) plus valium (2.5-5 mg) as required (and really understanding the lifestyle changes I needed to make) did the trick. Physiotherapy has been a key instrument in fixing things up too.
No relief yet and I’m on at least drug number 7-8… I reckon it’s more like 10-12 but I try to forget! Didn’t give ALL of them a fair trial (but most) due to SEs…
Drug no. 6
added drug no. 8
combo is working so far
though I must say I as i did know how to deal with this crap earlier i did not give drug nos. 1, 2, 4, and 5 a fair trial
Wow after my last post I’m looking back and its been a bloody long journey for me
Though many have suffered much longer than me. Can’t imagine how they managed
Hmmm…lets see…ive tried Serc…topomax…nortriptyline…celexa…propanalol…i may be forgetting a few more…I am now on amitriptyline & it has helped about 70%…so i am sticking with it.
Ive been suffering about 3 yrs now, must off tried about 12 meds topamax the worst for me,nearly took my own like taking this horrid pill. Im now off all meds and have been for 2 months, just taking about 9 supplements feverfew and im about 90-95% better x
Scott- did the cipramil work pretty consistently the whole time? what % did it help you? What symptoms did it help with most?
— End quote
Cipramil
Started on 10 mg in the depths of MAV (post vestibular neuritis) and an accompanying anxiety disorder peppered with acute depression that hit in waves.
10 mg got me back to the land of the living but I was still a train wreck and very fragile, dizzy, anxious – still managed to go overseas at the time though it was rough.
Anxiety was still bad back at work and my GP said to double the dose. I went half way and took another 5 mg.
At 15 mg, BOOM, all symptoms pretty much stopped. I was at 95% again after 9 months of hell. Slept well, no dizziness, anxiety gone.
At 15 mg I had no libido, felt like a machine without emotion and put on 15 kg. Not happy.
At 15 mg I began developing strange pains everywhere in my muscles. Neck was worse, heels hurt, hands were stiff in the morning, my ass would get really sore sitting in a chair all day – like millions of pins stuck in it.
4 years later and I couldn’t take the headaches any more or the neck pain. Time to get off Cipramil.
8 ) I failed coming off Cip 4 times but finally got there.
In the end switched to a low dose of Paxil and still on it.
Though Cipramil sort of sucked for me, it was a double edged sword. It really saved my life in 2004 and got me back on track to finish my thesis. Yay. 8)
Paxil has been really OK at 2.5 mg but I still think this stuff is hitting my libido but nothing like Cipramil did. I think it also messes with my sleep a bit too but that could be MAV too.
Now that my neck is OK and I have sorted out a major chronic trigger, I’m going to see if I can ditch an SSRI again. I always fail doing this but will have a go anyway with this new outlook and see if sleep is better or worse etc.
I hope it goes well!!! That sucks so much about the cipramil side effects…ugh…i wonder if you ever try it again you could add topamax to help with weight loss and pain?
Thank you everyone. I am really close to stoping the sando and trying the topamax. Appreciate all your help! It’s so frustrating. It’s almost like when you are trialling a med, you notice your symptoms more beaause you are focussed on whether they are better or worse etc. So frustrating! Good to hear there is still hope out there
