Hi everyone
I recently had a phone conversation with our specialist. I described the jerks my husband does on & off all day which usually is a single jerk. Also 2 episodes of where he had jerks that were about 6 in a row. Afterwards feeling weak & wobbly. The specialist has now prescribed him anti epileptic meds. He stated this can happen with CBD. Has anyone else had their LO prescribed these or any experience?
Hello again Beau
How are things going for you both now?
I'm writing this post with feelings of trepidation as I am in no way qualified. So with that in mind:
With PSP and CBD Myoclonal Jerks are quite common.
Myoclonal jerks = myoclonus)
"PME diseases belonging to the class of cerebral storage diseases usually involves myoclonus, visual problems, dementia, and dystonia (sustained muscle contractions that cause twisting movements or abnormal postures). Another group of PME disorders in the class of system degenerations often is accompanied by action myoclonus, seizures, and problems with balance and walking."
How is myoclonus treated?
Treatment of myoclonus focuses on medications that may help reduce symptoms. The drug of first choice to treat myoclonus, especially certain types of action myoclonus, is clonazepam, a type of tranquilizer. Dosages of clonazepam usually are increased gradually until the individual improves or side effects become harmful. Drowsiness and loss of coordination are common side effects. The beneficial effects of clonazepam may diminish over time if the individual develops a tolerance for the drug.
Many of the drugs used for myoclonus, such as barbiturates, levetiracetam,phenytoin, and primidone, are also used to treat epilepsy. Barbiturates slow down the central nervous system and cause tranquilizing or antiseizure effects. Phenytoin, levetiracetam, and primidone are effective antiepileptic drugs, although phenytoin can cause liver failure or have other harmful long-term effects in individuals with PME. Sodium valproate is an alternative therapy for myoclonus and can be used either alone or in combination with clonazepam. Although clonazepam and/or sodium valproate are effective in the majority of people with myoclonus, some people have adverse reactions to these drugs.
Some studies have shown that doses of 5-hydroxytryptophan (5-HTP), a building block of serotonin, leads to improvement in people with some types of action myoclonus and PME. However, other studies indicate that 5-HTP therapy is not effective in all people with myoclonus, and, in fact, may worsen the condition in some individuals. These differences in the effect of 5-HTP on individuals with myoclonus have not yet been explained, but they may offer important clues to underlying abnormalities in serotonin receptors.
The complex origins of myoclonus may require the use of multiple drugs for effective treatment. Although some drugs have a limited effect when used individually, they may have a greater effect when used with drugs that act on different pathways or mechanisms in the brain. By combining several of these drugs, scientists hope to achieve greater control of myoclonic symptoms. Some drugs currently being studied in different combinations include clonazepam, sodium valproate, levetiracetam, and primidone. Hormonal therapy also may improve responses to antimyoclonic drugs in some people.
from National Inst. of Neuro. Diseases and Strokes.
What we did:
Having said all of that Liz suffered these and they diminished markedly when she started doing gently exercise on and exercise bike. Just five minutes very slowly. Hydrotherapy pool visits helped a lot too.
I would have a chat to a neuro-physio. Ours seemed to know all about this.
My worry about the medications quoted in the article above is that they are mostly quite sedative. Liz was adamant that she did not want sedation added to her list of woes.
I do hope this helps a little.
Best to you both
Kevin
thanks for the info Kevin. Not sure which drug yet as I have to take hubby to the GP to find out. I expressed concern at introducing any new drug. Had a bad experience a few years ago. He said it may make him a little more tired but would also help with his moods. I guess time will tell.
Hi
Yes, do try the exercise route though - It worked for us. It will improve his moods, most of these are quite strong sedatives used to calm anxiety and behavioural disturbance too. They are not solely for epilepsy.
Please recheck my second post - I have just done an edit.
Good luck
Kevin
Hi
I'm doing this as a separate post so that it is not missed.
" Studies have found that cannabinoids have demonstrated the ability to reduce seizure activity (Wallace, Martin & DeLorenzo). Most of the traditional medications used to treat myoclonus are also used to treat epilepsy, which suggests that cannabis, already demonstrating effective for epilepsy, may also prove beneficial for myoclonus.
The ability of cannabinoids to decrease or eliminate seizures is due to their interactions with the endocannabinoid system. Activation of cannabinoid receptor 1 (CB1) has shown to dampen neurotransmission and produces an overall reduction in neuronal excitability (Wallace, Martin & DeLorenzo, 2002) (Blair, et al., 2006). This finding suggests that cannabis may be able to combat myoclonus caused by over excitability.
Cannabinoids have also proven beneficial for curtailing tics and tremors in movement disorders like Parkinson’s disease and Huntington’s disease (Pazos, Sagredo & Fernandez-Ruiz, 2008). Researchers suggest that cannabinoids may help alleviate involuntary motor symptoms because both CB1 and CB2 receptors, which cannabinoids act upon, have been found to be located in the basal ganglia and cerebellum. These are areas of the brain that control movement (Sagredo, et al., 2007).
CBD oil is legal in the States and the UK. Cannabis contains two components THC and Cannabinol. The THC is the psychotropic element which gets's folk high. THC has been removed from the product. Leaving the Canabinol which is not psychotropic. It does not make folk 'high'. CBD oil is not Cannabis.
Best
Kevin
I'm wondering if any of these are available in Australia. I know our rules are quite strict.
Hi Beau
I'm afraid that it appears that CBD oil is still prohibitted in Oz.
Be careful though - Hemp Oil is permitted and it does not contain the much needed Cannabinols which are the component we need here. Hemp oil is of little value for our purposes.
ausprimaryhemp.com.au/blogs...
Best
Kevin
and apologies - I assumed you were in a different country.
My husband walks 2 to 3 times a day. The specialist said he is as good as he is because of this exercise.
Hi
Mum has CBD and has developed epilepsy in the last 12 months. She started having small single jerks in 2013 and they started to get worse as they years have passed. She was then still mobile so was walking well still, she used to walk miles daily but it did decrease and since 2015 really went down hill and needed help to walk and couldn't go far. She is now not walking but occasionally doing stands but not for much longer I don't think. She is trying still though bless her. We do passive limb exercises with her arms and legs but she finds that too much now.
Last February she had a big tonic clonic seizure which she was in hospital after as first one. She wasn't started in any drugs to see if it was a one off. Unfortunately it wasn't as she has three more since and was diagnosed with epilepsy in September. Her last one was on Mothers Day. We have tried numerous meds and she can't tolerate them. Ones that specific for jerks had no effect at all but made her feel awful. Another neurologist was consulted and he advised we stop them as they are not effective in CBd to stop the jerks. She gets so many now it is horrible to see. She is on a very low dose of clobozam to help reduce tonic clonic seizures, this is how going to be increased after last seizure.
I'm going to see if the CBd oil helps her as she really cant tolerate medications, she may not tolerate the oil either. It is known though that patients can't tolerate medications with these conditions and more than one professional has said to me they don't really work as they should with these diseases.
Thanks. Let me know about the CBD oil please. I hope it works for your mum.
I take gabapentin at bedtime which seems to help some. Small dose compared to what someone with epilepsy normally takes although I am finding I need to increase a little as time goes on. Helps with the neuropathy and associated pain a little too.
Hi falcon946
That's really useful to know.
Thanks
Do you get any drowsiness with it?
Best wishes
Kevin
At times but I think I have gotten used to it. Since it stops or makes the jerks and pains tolerable then I can sleep some also. At night any drowsiness is welcome. When I need it during the day I try to take it independent of any other meds so I don't notice anything. I do think you have to give your body time to adjust though or you will probably notice drowsiness.
Need meds to help with stiffness and freezing
Neurologist is suggesting stopping Meds
My husband is refusing his meds
What depression meds are the best for someone with psp?
