Hello All,
My sister, 68, has mid stage PSP diagnosed in October, 2019. She is having toxic reactions to antidepressants, Wellbutrin, Mirtzapine, Cymbalta. She had bad reaction to C. Levodopa and can not take. She is in pain but also had toxic reaction to Tramadol and Ibuprofen. I need suggestion for alternatives to help get her out of pain.
She has been through so many severe reactions that she says she wants to die.
Please advise.
I am in the US.
thank you in advance
Hello
There is so much in your post, much of it beyond my training.
I'm sorry your sister is having such a tough time.
C. Levodopa is believed to be a good test to differentiate PSP from Parkinson's. If someone does not respond to it then it is likely they have PSP and not Parkinson's. And, yes not responding is different from reacting to it.
Your list of meds, is rather long for PSP. Could she be suffering from toxicity from overmedication?
That's a heck of a lot of antidepressants before we even start. Is the MD confusing PSP flat affect with depression? Flat affect is flat emotions if you will. It is a key indicator of depression too. However the flatenning in PSP is related to lack of brain function in that area and that is not the same as depression. The person does not feel 'down' when it's PSP. However if she is being given them to lower agitation, then that is different. Even so it is quite a cocktail. Extremely so.
When someone is given multiple medications to treat a related set of symptoms it is called polypharmacy. It is frowned upon in the U.K because one cannot tell which medication is helping and which is just adding to medication load. It is used, but mainly by experienced specialists, not basic MD's.
One route here is to ask the MD for a medication holliday and then re-introduce medication at limited doeages over time.
I am not a doctor, but I have worked with many of the medications you mention, for many years in mental health.
You do seem to be describing toxicity from over medication. Do have a good talk with the Dr.
I do hope this helps a little.
Best to you both
Kevin
Thank You. Her PSP neurologist prescribed the antidepresents, first the Wellburtrin,then the mirtazapine....then another neurologist tried Cymbalta for her neuropathy pain in
her wrist (botched carpal tunnel operation). One after the other...with breaks between.
She is off of everything now at my insistence (I agree with you about the amount of drugs).
Except Tylenol PRN for pain which isn't helping.
I can not give her any quality of life when she is in pain.
I am looking for alternatives such as chiropractic, etc.
Hi
Great that you got that sorted out.
Finding a good chiroprater is difficult (in the UK), some are good, some 'less so'.
Getting local recomendations for registered one's is all.
Do discuss reintroducing meds. as and when with a Specialist you trust. After a period of the body settling down it will tolerate reasonable medication again.
Meanwhile, there are a number of non opiate pain killers. do you have access to a pain specialist Dr?
Would a neurological physiotherapist be a stop gap?
I do wish you well.
Warmly
Kevin
Hurrah - you have seen the light! I have been diagnosed PSP 3 yrs ago, and only slow deterioration. Damn sure that's partly due to AVOIDING standard medication And going the holistic route. Targeted exercise, complementary therapies, diet, supplements, and so forth. NO bad effects, and I am still an active happy bunny! Tell/ask more if you like .... Timbow xx
What type of pain is she in? My MIL has periphal neuropathy and takes Gabapentin 200mg/3x daily. That is supplemented with Tylenol in between doses and she usually takes 1 dose Tramadol during the night. That regime still doesn't block the pain 100%.
My dad had muscle pains due to rigidity and used Lidocaine patches and the occasional muscle relaxer when things got really painful.
Ron
Hi 19light!
I think Kevin poses a situation worth exploring.
These are our experiences about medication around PSP:
•Control of palliative medication against depression, as well insomnia and anxiety. In our case right now (after 8 years from the first symptom of PSP): 1 Sertraline-50 at breakfast (depression) and 1 Lorazepam-1mg one hour before dinner (insomnia and anxiety) (**). Of course all these drugs were prescribed by a physician. After around 6 years with this medication no appreciable side effects on our case.
(**) I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.
A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.
Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
•Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opioids. Currently when an episode of pain arises we use progressively Paracetamol, alternating Nolotil capsules / paracetamol reducing Nolotil as get better, Nolotil in capsules, and if the pain is acute Nolotil in glass ampoules orally. All these treatments under strict medical supervision. (Nolotil is “magnesic metamizol”).
I know "magnesic metamizol" (Nolotil) is prohibited in some countries and that, curiously, has more side effects for people living north of the 50th parallel.
Below the 50th parallel till ecuador it seems that it is used without big problems, always under medical supervision.
Ruling out that the patient has not fever or is in a painful posture, in the vast majority of cases they do not mean that the patient is suffering from some terrible pain, they simply have a light headache, pain on a leg or an arm and the solution is a "liquid paracetamol" or a massage in the affected area with a suitable cream (Vicks Vaporub has been enough in our case). Other times there are gas in the stomach as a result of a flatulent meal or the patient try to express a desire (to go to the service, drink liquid, hungry, eye drops, too much light or just to get bored, want someone listen to them, talk to them, read them, etc.....Or.... to be opposed to the main caregiver taking a respite or holiday.
Hoping to be useful.
Hug and luck.
Luis
Poor thing. I feel for you xxx
It is very helpful to on-going research if negative effects of meds are documented and reported.
Here's the link:
Hi, 19 light! My sister uses gabapentin. Also rubbing with a cream used for muscle pain Meloxicam (here the commercial label is Virobrom). LuisRodicio and Kevin_1 gave you wide advice. But always ask a pain specialist.
Big hug
Elena
Hi. Gabapentin worked for a month and then stopped working.
We are having the same problem with pain medications. They seem to work for
a little while but then stop. I have heard this is sometimes a problem with PSP.
Things work and then don't work. Also Tramadol had adverse effects.
Thank you for responding. It helps not to feel alone.
My husband’s depression did not respond to any prescribed antidepressant medications and we tried every type under the sun over several years. Finally a clued in doctor decided to address his pain rather than the depression. The doctor was right! When the pain was manageable, his depression lifted.
I love reading everyone’s advice and tips. Thanks friends!
❤️ I SewBears
thank you sew bears. Everyone is so helpful!
Have you tried CBD oil or medical marijuana, depending on whether or not it’s legal where you live?
Magnesium also helps me too. In oral form and as a external spray and I use a body wash with magnesium init too.
Then I also use heat pads to help relax my muscles and do relaxation/meditation. Other times I will distract myself with doing puzzles, word games, reading and writing, or a good film.
Feeling broken hearted 
Mum has CBD and now an electric wheelchair to promote independence but it’s not going well 😕
Villa Night in Hilton Head Island, SC
Any other people diagnosed with psp have high iron stores? 
Brilliantly simple, simply brilliant!
