Sandomigran has become less effective

Hi All,

I was diagnosed with Vestibular Migraine about 3 years ago. It took about 9 months to diagnose and I was dizzy 24/7, couldn’t drive, watch TV and found it hard to work, as I work in IT and am constantly staring at a computer screen.
My neurologist prescribed sandomigran, which was a miracle drug for me and within about 3 months I was back to my old self.
I started on 1 tablet and went up to 3 initially. my maintenance dose for the last 3 years has been 2 tablets.
Whenever I did long stressful weeks at work which would normally involve flying to another state, I would up my dose to 3 tablets for a few weeks, as I would always get break through migraines (which was mainly just dizziness, like I was on a boat) because of the stress and long hours.
I have been doing this for the last 3 years and it has worked great…until Christmas last year.

Just before Christmas I had a few killer weeks at work - no weekends and 80 hours a week for 2 weeks. Of course this resulted in my break through migraines, but as always I just upped it to 3 tablets assuming it would go back to normal in the next few weeks.
1 week later no different, 2, 3,4,5 weeks still no better. I upped it to 4 tablets in February this year and I am back to about 80-90 percent and in the last 2 weeks I am now on 5 tablets, still sitting at around 80 -90 percent.

The neurologist is now trying to move me on to Topamax, but I am apprehensive as this DID work so well for me for the last 3 years until now.

Has any one else had Sandomigran become less effective the longer they are on it??? I am not sure what has changed, I am have now cut out wheat,dairy, eggs, caffeine, alcohol… basically anyhting that is fun :lol: and still no major improvements.

Cheers

1 Like

Hey Dizzyrascal

I too was diagnosed 3 years ago with Vestibular migraines after about 5 months (a very rough 5 months of basically thinking I was losing my mind) of GP’s and eventually a Neurologist and then a bunch of brain scans etc and was finally diagnosed and put on sandomigran. The sando worked pretty much straight away and within about 3 weeks I was back to %90 i think. I had at that stage gotten up to 3 tabs (1.5mg) taken each night. I stayed on that dose for about a year with no real lapse back into symptoms until the month of july almost exactly a year later than when they had initially started. At that point I went back to the Neurologist who told me to increase the dose until the symptoms faded again. I did this and got up to 6 tabs (3mg) per day after about 3 weeks and the symptoms faded away again. I then after a few months of feeling good went back down to a maintenance dose of 3 tabs a day again which worked fine. In about may this year I had been feeling pretty much symptom free for a good 9 - 10 months. My Neurologist had advised me that If I was symptom free for a considerable amount of time that I should reduce my dosage and eventually come off it all together.
So, at this stage I began to do that and by the end of may I was taking 1 tab every second day and 2 tabs every other day.
Then pretty much out of nowhere I felt the symptoms coming back. I started to increase the dosage again gradually, that was three months ago now and I am up to 6 tabs per day (3 throughout the day, 3 at night) and still do not have the symptoms under control. What I have realised from the past three years of flareups is that it has been the same time every year that they have come back with a vengeance, pretty much to the day each year for the last few years. Starting on about the 1st of june and for the first two years lasting for about 2 months but this year I am still suffering now after 3 months and counting regardless of being back up to 6 tabs a day.
The symptoms have seemed to improved slightly but the Sando does not seem to be having the same effectiveness as it has done in the previous couple of years. I am not sure if it is me becoming used to the medication or if it is the migraines getting worse.

A bit of background
I am a 35 y.o male who is physically fit. I train/run at least 6 days a week. the only side effects I got from the sando was an increased appetite at the beginning that lasted a couple of months and a slight drowsiness that lasted about the same amount of time and then dissipated slowly to the point that I could not notice any side effects.
I work in hospitality and dealing with people while constantly feeling dizzy and “out of it” is probably been the hardest aspect of trying to deal with this thing.
My symptoms are constant at the moment and seem to vary in degree day to day or week to week but I have had no reprieve from the symptoms completely now for 3 months. Alcohol or food does not seem to be a factor for me although I do not feel like drinking all that often but, when I do I do not notice any difference in the following days.
I would be interested in hearing more about your symptoms and weather or not they too are constant etc, etc… Although I have been diagnosed by a Neurologist I still sometimes wonder If they really “vestibular migraines”. I read other peoples accounts of there symptoms and they are quite often very different from my own.

Cheers

Dean

Hi Dean,

If you don’t mind me asking, whereabouts are you located? I had my “big bang” event last year in July as well, and i have heard other sporadic reports of tight seasonal dependence that doesn’t match any known allergy timetables.

Therefore, for now, I’m gathering anecdotal data in the hopes I can identify the mysterious origin of these symptoms. :slight_smile:

Thanks!

Hi Whitepines

I am living in Melbourne, Victoria.

Sorry for the belated reply. I have been travelling overseas. Interestingly enough I didnt notice a big change in symptoms while away but have been noticing a slight increase in symptoms since returning. I am still on 3mg (6 x 0.5 tabs per day)

Cheers

Dean

My GP and Neuro have both told me that it is possible that after a period of time (say a few years) medication that was working can become ineffective and you need to change. It’s also the case that sometimes meds that you were taking that were helping don’t help the second time around if you take a break (which is why I’m paranoid about stopping my meds :smiley: ). It is weird that your flareups happen at the same time each year - I wonder if there is some external factor that is tipping you over at that time?

Your symptoms sound a lot like mine, so you’re not alone

Hey DTJ,

Sorry for my tardy reply, I have not been on here in ages and today was cleaning out my emails and saw I had some replies from forever ago. so I thought I should respond :smile:

I am now on 5 x 0.5 tablets at 5pm each day and it has worked. I am back to my normal self BUT still need way tooooooo much sleep which is unusual for me (pre medication I was not a big sleeper).
I too exercise 6 times a week and am really fit and healthy. Yup my symptoms were constant, no relief for a year before I started on the sando.

I am going to try and come down from the 5 tablets starting next week and see if I can now start to get back to my maintenance dose. It has now been almost a year since I increased from 2 to 5 tablets.

I did cut out a heap of foods from my diet and am sticking with that, I am not sure if it was the medication building up in my system that made the tablets work again or if it was the cutting of foods from my diet.
I cut out wheat, eggs, dairy, chicken, mushrooms, pineapple … you name it, I cut it all out for 6 months. I did a hair test which told me the foods that I should steer clear off for six month to cleanse my body.
I didn’t really believe in that kinda thing when I started, but I feel that it has made a difference. I now still stay away from eggs,wheat and cows dairy and I still seem to be doing ok. We will see what happens in the next few weeks when I start to decrease the meds.
If it I can’t get back to the maintenance dose I think I will give the topamax a bash as the sleeping so much kinda gets to me. The Drs told me that the topamax wont make me as sleepy so it may be worth a go. I am also over going in to the pharmacy and being told every time that “5 tablets is a really high dose, I think you should start looking at a new medication” Any way I hope things have improved for you since your last message. All the best.

Hey Dizzyrascal

I too apologise for the tardy reply !

Thank you for getting back to me. Since I last posted I have been consistently taking 6 x 0.5 of the Sando per day. I have had a small cut in the severity of my symptoms but have still not had complete relief. I have not had a day since July last year where I have not felt dizzy, heavy headed or foggy in some capicity.
I am thinking after reading your response that maybe I should try and cut out some foods and see if that yields any results or not.
I am also considering going back to my neuro and maybe starting on the topomax to see if that works. It has been almost 4 years for me now on the sandomigraine and I too get the lecture every time I go to fill my prescription …“you are on a very high dose of this medication… blah blah”
I also go through periods of wondering if it is the medication that is now making me dizzy and heavy headed but I think that that is just a symptom of any chronic illness is that you never get a moment of clarity to have clear perspective.
How are you feeling these days after cutting down the Sando ? would like to know…
Also if anyone else has experience going from Sandomigraine to Topomax I would love to hear from you.

Thanks again Dizzy, and all the best.

D

Hello, I am new to this entire group.

I’m curious, I have been on the sando for just a few weeks. I am on .5 mg’s an hour before bed.
It seems to be working, rather quickly too! But I am dizzy.
Does anyone have experience with that calming in time?

Thanks!

Hi Andrea

When I was first diagnosed with vestibular migraines I was prescribed Sandomigrane. It took a few weeks to start working and probably a month and a half - two months of titrating up to 3 x 0.5 mg before bed each night to really give me full relief. It did though give me complete relief of my symptoms (which were 24/7) after that time I was back to 95 % mostly and I found the drug to be amazing. All of the side effects, which were only really drowsiness, increased apetite and some increased dizziness subsided completely after 2 -3 months and I did’nt even notice any side effects after that.
Unfortunately after about 4 years the sando has lost it’s efficacy for me. I think it is because I was felling so normal after being on it for a few years I tried coming off it completely and then my symptoms returned after a while. I then tried upping the dose again and it never really was as effective as it was before.
Anyways, best of luck with it. I found it to be very effective indeed but you do need to stick at it.
At times I would get up to 6 x 0.5mg per day but for the most part was on 3 x 0.5 mg at night. I didnt have any trouble with alcohol interaction either.
Hope this is of some help to you. :slight_smile:

Hi DJT,

My response is late - I have been so busy!

My migraines are mostly gone, just 1 last month with a couple of mild headaches. I am over the moon with this. The weight gain is not great 15 pounds. But that is the price to be pain free. Perhaps now I will be able to up my activity now that I have less pain.

If they do return, I suppose I will have to deal with that when the time comes.
I hate living this lifestyle. But, I can’t do too much more about it.

Thanks for your response - greatly appreciated.

Hope you are still well

Andrea.