This is useful and has confirmed for me how deleterious some of these drugs can be. Have you tried regular systematic and stretching, tailored to your specific needs?
I am extremely sensitive to meds. I'd be worse than a zombie on that amount of medication! Not sure on managing the spasticity meds but has botox been looked at? It has helped me. Also, in the mornings, it takes a while for my nerves to wake up. So I set my alarm for 1hr before getting up & take modafinol. This seems to help greatly in getting my legs to work enough to get up. I follow up with another dose by early afternoon. Perhaps adding that might help with daytime jelly legs & sleepiness & fatigue. And if said patient is more alert during day, he may sleep better at night. More productive sleep along with more daytime energy to move those spastic limbs might help a wee bit. Also, I faithfully take a magnesium supplement at night, every night. I recently started taking lowest amount of baclofen instead of tizanidine. I can barely tolerate it, waking up with the fuzziest head. Feels like I drank a ton of tequila the night before.
Really useful thank you. I’m grateful that sativex is helping me and p has more than halved my zombie inducing baclofen intake (90mg to 40mg a day). That has helped clear my head a bit to keep working. If my legs jump in bed another spray of Sativex calms things down within 20mins.
Very optimistic re exoskeletons - any examples you can reference?
No personal anecdotes yet. There is a trial being done in paraplegics in the west of England and some physiotherapy departments are using it for rehab purposes. They cost quite a lot and the effectiveness/cost-effectiveness in MS will have to shown before they become available on the NHS.
What about exchanging Gabapentin for Pregabalin CR? Regular Pregabalin needs to be dosed multiple times a day and is too sedating. The CR can be titrated up with the evening meal and Is not nearly as sedating. (If at all in my experience).
As Clonazepam has a relatively long 1/2 life once steady state is reached, early evening dosing might eliminate the need for daytime muscle relaxers. Tizanidine’s 1/2 life is not as long so it could be used just at bedtime.
I have had difficulty with fatigue and spasticity for all of my 18 years of diagnosis. Pain as well. I think the best outcome can be achieved by being creative to find the best combination for a particular patient.
This approach does have a downside- MS bodies don’t like change and sometimes these transitions are difficult to struggle through.
I have found a low dose of the original form of amphetamine salts in a very low dose in the AM can combat some cognitive fog and, for me at least, seems to provide a blunting of pain perception.
This is useful and has confirmed for me how deleterious some of these drugs can be. Have you tried regular systematic and stretching, tailored to your specific needs?
I am extremely sensitive to meds. I'd be worse than a zombie on that amount of medication! Not sure on managing the spasticity meds but has botox been looked at? It has helped me. Also, in the mornings, it takes a while for my nerves to wake up. So I set my alarm for 1hr before getting up & take modafinol. This seems to help greatly in getting my legs to work enough to get up. I follow up with another dose by early afternoon. Perhaps adding that might help with daytime jelly legs & sleepiness & fatigue. And if said patient is more alert during day, he may sleep better at night. More productive sleep along with more daytime energy to move those spastic limbs might help a wee bit. Also, I faithfully take a magnesium supplement at night, every night. I recently started taking lowest amount of baclofen instead of tizanidine. I can barely tolerate it, waking up with the fuzziest head. Feels like I drank a ton of tequila the night before.
Really useful thank you. I’m grateful that sativex is helping me and p has more than halved my zombie inducing baclofen intake (90mg to 40mg a day). That has helped clear my head a bit to keep working. If my legs jump in bed another spray of Sativex calms things down within 20mins.
Very optimistic re exoskeletons - any examples you can reference?
No personal anecdotes yet. There is a trial being done in paraplegics in the west of England and some physiotherapy departments are using it for rehab purposes. They cost quite a lot and the effectiveness/cost-effectiveness in MS will have to shown before they become available on the NHS.
What about exchanging Gabapentin for Pregabalin CR? Regular Pregabalin needs to be dosed multiple times a day and is too sedating. The CR can be titrated up with the evening meal and Is not nearly as sedating. (If at all in my experience).
As Clonazepam has a relatively long 1/2 life once steady state is reached, early evening dosing might eliminate the need for daytime muscle relaxers. Tizanidine’s 1/2 life is not as long so it could be used just at bedtime.
I have had difficulty with fatigue and spasticity for all of my 18 years of diagnosis. Pain as well. I think the best outcome can be achieved by being creative to find the best combination for a particular patient.
This approach does have a downside- MS bodies don’t like change and sometimes these transitions are difficult to struggle through.
I have found a low dose of the original form of amphetamine salts in a very low dose in the AM can combat some cognitive fog and, for me at least, seems to provide a blunting of pain perception.