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 wasnāt thrilled ā¦ Iāll see what this is like. The doc wasnāt keen giving it to me while on SJW but I assured her Iād cut back on it and Iād only be starting on a very low dose of nori ā 2.5 mg for the first week as long as I donāt feel like a crazed lunatic on it.
Kira ā I know your daughter thinks nori is great and it works well for her. Can I ask what dose sheās on that ended up being the āsweet spotā?
If this drug is a loss cause I may try Atenolol next. Hope everyone has a had a good day.
Cheers ā¦ Scott 8)
Lauren - how are you doing on this drug? Let me know whatās 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 50mgāwhich she didnāt tolerate, it gave her a week long positional headache. Back to 25 mg, still with break through eventsāa terrible trip to Marthaās Vineyard, ferry ride/mildewed house/barometric pressure changes. When we came back, we bumped the dose to 30 mg, and that did the trick.
Sheās 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 āsweet spotā, he just couldnāt go below that.
Two points: 1) here in the US it comes in capsulesāso you canāt 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, itās Watson brandāand she improved with that brandāgenerics can have at least a 20% variability from the brand name, and thatās 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 gainādue to the pedi neurologist insisting she drink gatoradeāswitched to water and sheās skinny now, dry mouthāsheās a singer and carries water with her everywhere, and at times some insomnia.
Her neurologist brings up weaning down/off and she wonāt hear of it: I saw one study on patient course after withdrawal of preventive medsāthis was for classic migraineāand the vast majority relapsed, and didnāt respond as well to the initial drug if it was resumed. Made me agree with her.
Glad youāre feeling better. What a nightmare.
Kira
I saw one study on patient course after withdrawal of preventive medsāthis was for classic migraineāand the vast majority relapsed, and didnāt respond as well to the initial drug if it was resumed. Made me agree with her.
Kira
ā End quote
I know itās only anecdotal, but i have heard many stories of ADs and ACs not working after withdrawing and re-instating. Thatās one of the reasons I decided to try Top next instead of Effexor. I sure donāt want to lose the good effects Iāve had from my Zoloft.
Iāve decided to take a detour and give pizotifen a shot first again. Iām starting low at 0.25 mg before bed and will crank it up to see what goes down over the next week or two. Iām expecting some sedation but thatās ok if it keeps me sleeping at night. Hope it doesnāt cause any hassles with the SJW but it didnāt seem to do any damage while on Cipramil.
This study has made me think pizotifen is worth one more try:
Iāve decided to take a detour and give pizotifen a shot first again. Iām starting low at 0.25 mg before bed and will crank it up to see what goes down over the next week or two. Iām expecting some sedation but thatās ok if it keeps me sleeping at night. Hope it doesnāt cause any hassles with the SJW but it didnāt seem to do any damage while on Cipramil.
This study has made me think pizotifen is worth one more try:
Scott, for some reason sandomigran is no longer available in the USābut that study is pretty compelling. Itās obvious that various experts have their own personal āshort listsā of drugs they consider effective, but weāre 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 āNone of these drugs are without side effects, none are extremely effective, learn them and tailor your therapy to the patient. Know their limitations.ā And, with MAV, weāre a different group than classic migraneurs.
I hope it does the trick.
Iāve got to figure out why itās 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, sheās in great shape.
Scott,
Iāve been taking sandomigran .5mg, 7 tabs at night before bed, which I increased slowly. It certainly gave me a good nightās 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 didnāt 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 neuorās āfavouritesā 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 donāt think the sandomigran dealt with, was my lowered anxiety/stress threshold so after consulting my neuro Iāve 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. Iām 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 Iām slowly increasing the Dothep to see where I think Iāll find the most benefit and eventually scaling back. Whilst Iāve been fiddling with Klonopin and Dothep, Iāve 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 weāll wait and see.
Oh, my only side effect from sandomigran, because I was taking such large doses, was a 10kg weight increase, canāt tell you about the mojo unfortunately but from a 49year old mother of two, Iām not overly concerned about that issue
regards, Judy
Hi Kira - yes, I recall hearing Sando was removed from the US market now that you mention it but Iām not sure why either. Adam might be more familiar with this. Iāll ask him if he hasnāt 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 itāll 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 Johnās wort Iām 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 youāre not happy about staying on a benzo. The one that I use is called Remotiv ā formula is Ze 117.
edit: Judy, when you started Sando, did your dizziness increase markedly at first before feeling better. Iāve 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 ā¦ 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 sandomigranā¦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 canāt say I felt anything worse than I already was feeling. I didnāt 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 daugherās 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 canāt 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, Iāve only reduced the dosage from 7 to 3 over the past two months (my neuro doesnāt 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. Iām two years and 3 months down the track now and feel at about 70%, but I donāt work Scott so I just canāt imagine how difficult this all must be for you. All the best.
Scott,
Just remember the explanation for why we canāt 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 canāt do two things at once.
