Nortriptyline

Hi Guys,

Some good news today: I made it through the night without my heart in my throat. Very nice to sleep a solid 8 hours even though it was full of some bizarre dreaming. No complaints here though after the shocker two nights ago. It certainly makes a large impact on the feelings of wellbeing just getting sleep sorted out.

I am also lucky in that my doctor is very cool indeed. I saw her this morning and took the paper in with me outlining MARD. She was very interested in it and studied the paper with me. She did mention that she sees a ton of anxious people and admitted that she needs to delve a little deeper in case there is a migraine or vestibular component. So my next bus stop is nortriptyline we decided. I had a crack at amytriptyline about a year ago but wasn’t thrilled … I’ll see what this is like. The doc wasn’t keen giving it to me while on SJW but I assured her I’d cut back on it and I’d only be starting on a very low dose of nori – 2.5 mg for the first week as long as I don’t feel like a crazed lunatic on it.

Kira – I know your daughter thinks nori is great and it works well for her. Can I ask what dose she’s on that ended up being the “sweet spot”?

If this drug is a loss cause I may try Atenolol next. Hope everyone has a had a good day.

Cheers … Scott 8)

Lauren - how are you doing on this drug? Let me know what’s happening if you can.

Scott, she started on the 10mg capsules, titrated up to 25 mg capsules, and then her pedi neurologist wanted her at 50mg–which she didn’t tolerate, it gave her a week long positional headache. Back to 25 mg, still with break through events–a terrible trip to Martha’s Vineyard, ferry ride/mildewed house/barometric pressure changes. When we came back, we bumped the dose to 30 mg, and that did the trick.
She’s been on it for about 3 years, needs occasional motrin, tolerated a trip to Germany without any flares.
Her current (adult) neurologist related a story about a patient who found 60 or 65 mg to be his “sweet spot”, he just couldn’t go below that.

Two points: 1) here in the US it comes in capsules–so you can’t break pills, either 10mg or 25 mg and 2) Initially she was on the generic made by Teva, and when I began to mail order them, it’s Watson brand–and she improved with that brand–generics can have at least a 20% variability from the brand name, and that’s just chemical, not even bio-availability. There was a clear temporal association between changing generic manufacturers and her response.

Her side effects: mainly constipation, initial weight gain–due to the pedi neurologist insisting she drink gatorade–switched to water and she’s skinny now, dry mouth–she’s a singer and carries water with her everywhere, and at times some insomnia.
Her neurologist brings up weaning down/off and she won’t hear of it: I saw one study on patient course after withdrawal of preventive meds–this was for classic migraine–and the vast majority relapsed, and didn’t respond as well to the initial drug if it was resumed. Made me agree with her.

Glad you’re feeling better. What a nightmare.
Kira

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I saw one study on patient course after withdrawal of preventive meds–this was for classic migraine–and the vast majority relapsed, and didn’t respond as well to the initial drug if it was resumed. Made me agree with her.
Kira

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I know it’s only anecdotal, but i have heard many stories of ADs and ACs not working after withdrawing and re-instating. That’s one of the reasons I decided to try Top next instead of Effexor. I sure don’t want to lose the good effects I’ve had from my Zoloft.

Julie

Kira, thanks again for the info.

I’ve decided to take a detour and give pizotifen a shot first again. I’m starting low at 0.25 mg before bed and will crank it up to see what goes down over the next week or two. I’m expecting some sedation but that’s ok if it keeps me sleeping at night. Hope it doesn’t cause any hassles with the SJW but it didn’t seem to do any damage while on Cipramil.

This study has made me think pizotifen is worth one more try:

http://mvertigo.cloudapp.net/t/chronic-migrainous-vertigo/216

I’ll post back if anything earth shattering occurs – like a cure!

Scott 8)

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Kira, thanks again for the info.

I’ve decided to take a detour and give pizotifen a shot first again. I’m starting low at 0.25 mg before bed and will crank it up to see what goes down over the next week or two. I’m expecting some sedation but that’s ok if it keeps me sleeping at night. Hope it doesn’t cause any hassles with the SJW but it didn’t seem to do any damage while on Cipramil.

This study has made me think pizotifen is worth one more try:

http://mvertigo.cloudapp.net/t/chronic-migrainous-vertigo/216

I’ll post back if anything earth shattering occurs – like a cure!

Scott 8)

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I hope it works out! I’m planning to try pizotifen as well soon, but need to come off at least one of my current (two) meds first.

Scott, for some reason sandomigran is no longer available in the US–but that study is pretty compelling. It’s obvious that various experts have their own personal “short lists” of drugs they consider effective, but we’re a heterogeneous group, and we respond to different meds. I once went to a great migraine conference, just before my daughter ran into problems, and the expert summed up his talk on prophylaxis agents saying “None of these drugs are without side effects, none are extremely effective, learn them and tailor your therapy to the patient. Know their limitations.” And, with MAV, we’re a different group than classic migraneurs.
I hope it does the trick.
I’ve got to figure out why it’s off the US market.
Kira

PS: My daughter is visiting, and needed some ibuprofen last night and admitted that she has low grade symptoms at times, but ibuprofen takes it away. She did have some palpitations the other day. See, none of these drugs are perfect, and they all have side effects. But in terms of functioning and symptoms, she’s in great shape.

Scott,
I’ve been taking sandomigran .5mg, 7 tabs at night before bed, which I increased slowly. It certainly gave me a good night’s sleep if for nothing else. I also presented with chronic 24/7 migraine headachess, which over time has reduced to neglible. I had strong nausea (not from the meds, I actually didn’t have any real side effects except weight issues)which eventually dissipated also combined with the usual photophobia and phonophobia. I have to say it was on my neuor’s ‘favourites’ list and so I persevered with it but it has taken two years of this medication for very gradual improvement. My other issue which I don’t think the sandomigran dealt with, was my lowered anxiety/stress threshold so after consulting my neuro I’ve increased my Klonopin to .5mg morning and evening (which gave me the most improvement) for anxiety, and Dothep, a tricyclic antidepressant (as I think it also has antihistamines too) where there are no contraindications with the sandomigran. I’m not sure but I get the sense from my own personal experience, that the sandomigran is very good for your dinkum di migraine, but not sure it deals with the variants like anxiety/stress etc (might be wrong, just personal experience).

The anxiety/stress issues have improved out of sight and I’m slowly increasing the Dothep to see where I think I’ll find the most benefit and eventually scaling back. Whilst I’ve been fiddling with Klonopin and Dothep, I’ve actually been reducing my sandomigran every three weeks and am now back to 3 tabs per evening, with my goal being two tabls at evening. The formula should then read two Klonopin, three dothep and two sandomigran daily, so we’ll wait and see.

Oh, my only side effect from sandomigran, because I was taking such large doses, was a 10kg weight increase, can’t tell you about the mojo unfortunately but from a 49year old mother of two, I’m not overly concerned about that issue :wink:
regards, Judy

Hi Kira - yes, I recall hearing Sando was removed from the US market now that you mention it but I’m not sure why either. Adam might be more familiar with this. I’ll ask him if he hasn’t already seen this thread. I might have a look around on the internet later and try to find the answer.

Thanks for the info Judy. Wow, seven every night! I took 0.25 mg last night and slept like a log (I split one in half) and then woke this morning with the feeling like I could have slept for another hundred years! But I feel OK so far. Definitely have a different feeling in my head but hopefully it’ll turn out to be a good one. Maybe the Sando is already pumping a few rounds into this dizzy beast, wounding it as I type. Unfortunately the visual vertigo is still nasty.

On the anxiety front I can completely sympathise. Mine went ballistic with the start of this nonsense 4 years ago. But you know what? This brand of St John’s wort I’m on works EXTREMELY well and without any of the SSRI side effects. I never would have belived a herb could do any good for this thing but then it was used in a clinical trial (published in the BMJ) and was better than Paxil. You may want to have a look at it sometime if you’re not happy about staying on a benzo. The one that I use is called Remotiv – formula is Ze 117.

health.gov.il/units//pharmac … m/1630.pdf

Best … Scott

edit: Judy, when you started Sando, did your dizziness increase markedly at first before feeling better. I’ve been at work now for about 2 hours and my dizziness is off the charts now. It has increased by a factor of about 10 easily. Phonophobia is there bigtime as well. I have so much work to do … not sure what to do. At least valium does take the edge off of the dizz. Thanks.

Scott,
trying to remember about the side effects of the sandomigran…because I was dizzy and nauseous from the MAV for a long time whilst taking the sandomigran, it was a very gradual diminshment of the symptoms, so I can’t say I felt anything worse than I already was feeling. I didn’t appear to have any side effects even whilst titrating up to the massive 7 tabs per night, apart from having very good nights sleeping (my daugher’s bedroom was next door and she said she could hear me snoring!!) as well as eating like a pig!

I had really bad photophobia and phonophobia which have improved over time, but no visual stuff so can’t be of any help there. I can definitely say that the improvements from taking all that sandomigran did not appear overnight and has really taken two years of constant medication, I’ve only reduced the dosage from 7 to 3 over the past two months (my neuro doesn’t know that yet (yikes!!)).

Hope the stuff works for you Scott, all I can say it certainly took ages, improvement yes, but very slow. I just persevered because my neuro thought it was a wonder drug. I’m two years and 3 months down the track now and feel at about 70%, but I don’t work Scott so I just can’t imagine how difficult this all must be for you. All the best.

Regards
Judy

Scott,
Just remember the explanation for why we can’t chew gum and walk at the same time: in any vestibular challenged person, the need to concentrate will cause balance to quite literally fall apart. We need to concentrate so hard to stay balanced, we can’t do two things at once.

Hoping this settles down quickly.

Kira