Has anyone been prescribed valium/diazepam for stiffness/rigidity in arm/hand? Levidopa did nothing but I am concerned about potential side effects. I'm open to most anything right now to get some movement back. Even in the short term.
Diazepam: Has anyone been prescribed valium... - PSP Association
Diazepam
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taihde
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Sorry, I don't have any experience to offer, but didn't want your query to remain completely unanswered. Have you been diagnosed with PSP? My guy was given muscle relaxants for general rigidity, but they made him feel weak and dizzy, so he stopped taking them.
My mum is on Beclonfen which helped at the start, but as PSP progressed the rigidity just got worse. Regular soft massage was helpful. My mum's on Diazapam to help her sleep and she was waking up very distressed at night.
Hi Taihde!
In short these are some experiences on PSP disease expecting they could be useful :
First:
If physicians agree that there is suspicion of a Parkinson like neurological disease (PSP, CBD, etc.), then I suggest to start an intensive and systematic - gymnastic program as well as walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction.
Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.
In our case, Diazepan or similar are used to relax or against insomnia.
We use to do this program: Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (odd days), walk 200-300 meters (even days), speech therapy exercises and exercises mouth and ocular muscles. Then she needs to rest at least 30 '.
We have seen that laughter and good hydration (moisturizers for skin and liquids by mouth) help to mantain in good shape the face muscles.
In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by his own means, do it, even if it takes more time. With some help if necessary.
Without any scientific basis, only observation of few nearby neurological diseases PSP like, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.
Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.
Recently she pay close attention after dinner to a light TV show. Surprisingly this activity has significantly improved her relaxation and rest at night.
She have had some episodes of constipation that have been corrected by applying an intensive Mediterranean diet based in fruits and vegetables and helped by the drug "Duphalac" (an oral osmotic laxative).
Drops of artificial tears to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.
All PSP patients seem to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.
Various medications have been tried for pain episodes (falls). There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil (magnesic metamizol) in capsules and if the pain is acute Nolotil in glass ampoules orally. All these treatments under medical supervision.
I hope and I wish these notes are useful.
Thanks so much for taking the time to post .. very helpful
Hi
Yes, I would be concerned about sedation.
Like alcohol it causes 'relaxation' in the brain. But we're into quite complex physiology here. The stiffness is causes by a failure of the brain to send signals to move and probably other things too. So I am not sure how a drug which sedates the brain would help.
There again I am not a doctor.
Did a neurologist suggest this?
Our neurologist, a specialist in PSP, offered us nothing and he is very good indeed.
Massage, light exercise, and physio were what was recommended to us.
Best
Kevin
Kevin, yes my neurologist prescribed. I just don't like strong medications which tend to mask symptoms rather than help anything. I am going to hold off taking for a few days so I can enjoy a glass of wine with Christmas dinner.
Hi taihde
You've probably googled it, but anyway:
spine-health.com/treatment/...
Yes in the ordinary world diazepam is recommended for a max. of 28 days because of dependency. However our neurologist, who is a PSP specialist, told us that for some odd reason folk with PSP don't develop benzodiazepene dependency. When Liz stopped Clonazepam at a very fast rate of reduction she had no withdrawals whatsoever.
I wish you well with it.
Warmly
Kevin
I have been using diazepam myself for the last 30 years to relax muscles after my workouts. I get over tried from the workouts and can’t sleep. I use 5mg tablets that I break in half. I want the strength of 5 mg but break them to shorten the effect. The downside for me it some fuzzy mindedness the next day. Larry has had bad reactions to cold medicine with delusion. He cracked two ribs last January and was prescribed an oxycodone for the pain. I was unsure how he would react to that. Turned out he had no delusions with it. All you can do is try it and see.
The best thing we ever tried was something called Rotigotine. For my father it was very successful but some people have a skin reaction to the patches. My farther did not. Google it. It is worth a try in my view. My father even began to speak again and was more alert. Anne.
carehope in reply to
Hi there Anne ! Haven't been in touch in a while, but saw your post just now so thought to say a quick hi and hope you're doing well AND all the best to you and your family ! Merry Christmas !!🎄
in reply to carehope
Hi Elise, you have. Even on my mind too. It's so hectic here just now but not as much as you are going through just now. Will write properly very soon. Don't worry if you cannot get it together to write back. I understand. Season's greetings to you too. Lots of love, Anne X
Hi taihde, my wife (CBD) has never taken anything for her locked , rigid arm and hand, but after three years, she has been given four injections of Botox in her shoulder and arm and the difference is remarkable. The course is ongoing and injections will be given every three months.
I wish you well in your search.
Hi Tjayoo. My wife has had a rigid arm for the last two years (she has both PSP and CBD). I've not heard of Botox being used for this but could be worth a try if it works for your wife. Where do you live and where was it done ?
Our consultant was prepared to give Botox for drooping eyelids when it becomes necessary but so far havn't needed it .
wish you both well Bryan
Hi Bryval, I wish you well in the New Year looking after your wife, We live in Devon UK the Botox injections were given in Exeter. I personally am against all the patented pills and chemicals given for illnesses but in the case of Botox in my wife’s arm I see a remarkable change with no side affects whatsoever. There is a PSP/CBD specialist in University Hpl Southampton uk that first suggested Botox. My wife has her eyes closed a lot of the time, I will see what her consultant says re eyelid Botox in Feb’18.
Hello Tjayoo. Can't say happy New Year cos I don't think it will be - just hope it's not too distressing for everyone !
We are also seeing our consultant soon at GW Hospital near Swindon and will ask about Botox for Valerie. Do you know who your specialist was and who gave the injections ? It always helps if a successful treatment can be quoted.
Best wishes to you both. Bryan
Our consultant in Exeter Bolulinum Toxin clinic is Dr V Pearce. In Poole Dorset the expert in PSP &CBD in Dr Luke Massey. We used to go to a monthly meeting with other PSP sufferers and their carers near Andover, part of the PSP Association. I found it very friendly and helpful, there was someone came from Swindon. Best wishes
Thank you. I have been to Andover to the group run by Louisa but have found it too difficult to get there recently.
We may well have met there ! Do you still go ?
Hi Bryan, yes must have been you I saw and spoke to. No we no longer go as we moved to Devon, there is a group at Paignton but it’s a long way and no longer feel they would be of benefit, but good for carers just starting the tortuous PSP road. Stay positive Tim
Hi Tim. Thanks for the info on Botox. Saw our consultant today and he agreed to refer Valerie to the right guy in GWH in Swindon. They say she should have physio as well for it to be beneficial and they will arrange that when she has the treatment.
Fingers crossed and thanks again.
But why should I have to get the information from this site instead of the so-called experts !!!!!
Bryan
Hi Bryan, that sounds good and I hope you and Valerie will see a marked benefit. You may want to pass the following on to the consultant; ‘A substantial dose of 250 units of Botulinum Toxin (Botox) was injected into the left pectoralis major, 250 units in two divided doses to the left biceps and 250 units to the left forearm flexors’.
On seeing my wife’s consultant yesterday, he says he might up the dosage as the hand has not completely relaxed, I’ll drop you an update after next injections on 15th February.
My wife did have physio about three years ago but no help, today she would not understand what she is meant to do.
On another item, I try to get good bacteria into both my wife’s gut flora and mine from kimchi to Actimel.
Remember when lifting and moving Valerie to look after your back!
I agree with your last statement.
Regards Tim
My husband takes 2.5mg Diazepam (also known as Valium) at night to prevent cramps and help him sleep. It works beautifully with no ill effects. If he took it during the day it would make him too sleepy and more inclined to fall.
It's always worth a try. Just keep and eye out for side effects sometimes it's just not worth it. Nothing worked for my dad. He got minimal benefit from anything with horrible side effects so we just stopped it all.
Hi Taihde,
I was put on it for a week (CBD) , 2 mg 3 times a day. It did relax me but ended up sleeping too much and was still quite emotional. Am now on sertraline 50 mg once a day as crying all the time was wrecking my life. Only been on it 3 days but apart from nausea and a headache it seems to have lifted my mood so I don’t feel so desperate . My rigidity is not too bad but my whole left side is quite weak. Don’t know if any of this helps!
Hope you find some relief soon
Best wishes, Jayne
Hi,
I would defiantly agree with Kevin when he says.......
"Massage, light exercise, and physio were what was recommended to us."
My left arm and hand is getting more and more rigid and painful but I go to the gym and use equipment that stretches my arm and works the muscles. I also have massage that does seem to help.
You will never reverse the progress of CBD but maybe what I am doing helps delay the inevitable.
All best wishes,
Patrick.
Ps. I will defiantly try Botox when things get worse.
