Botox Injections Around the Eyes to help eyelids remain open and Amantidine

[Greenkerrycounty]

We saw a new neurologist Friday, and I hope I can get some opinions from my expert friends on HealthUnlocked. We live in Indianapolis in the USA. I'm very anxious to hear if anyone has any experience with Botox injections around the eyes for muscle spasms, and inability to keep the eyes open as a symptom of PSP. I see it as a fairly routine procedure in some areas, but it is not well known here. Also, any experience with Amantidine? The new Dr. ordered it for my husband, but I have heard it can have serious side effects. Please give me your opinion about the treatment facilities you use in the USA. I'm afraid Indiana is not as current on PSP as other regions. Thanks a lot. Maureen

[easterncedar]

We used to go to the Lahey clinic outside of Boston, where there is a neurologist who specializes in psp. We had excellent care there, no doubt, but there never was much to be done. She had my guy try amantadine, which we discontinued as it had no effect. A year ago last May she recommended botox injections as he could not keep his eyes open and also for his salivary glands, to suppress the drooling. She said the eyelid injections were about 97% effective. We had to cancel the appointment due to a bad fall that required stitches above his eye, then had trouble rescheduling, then my guy ceased to worry about his eyes, so we have dropped the idea altogether. It has been a year since that appointment was missed. Now we rely on a very good GP, and don't plan to return to the Lahey.

If you search for botox on this site you will see that many people have had it and thought it helped, although it is a temporary solution.

One thing about psp, whatever symptom you are chasing will change - with time alone.

Good luck, Maureen. I hope you find some good advice.

Easterncedar

[Greenkerrycounty in reply to easterncedar]

Thank you very much. Your answer was very helpful. Unfortunately, I understand what you mean by the symptoms. Sometimes I think it's easier for my husband just to leave him alone-- not put him through anything unnecessary thatI think might help.

[carlam]

I don't know about Botox, but my Amantadine has helped my dad with cognition, speech and staying more awake/alert during the day. I had to ask my dad's neurologist here in Western Mass. if we could try Amantadine after seeing it on this site. Best of luck.

[Greenkerrycounty in reply to carlam]

Thanks. Very encouaging

[ketchupman]

I've had lots of experience with both of these with my late wife. First, amantidine didn't seem to do a lot, but she never complained about taking it. It's actually used to combat flu-like symptoms, but is used off label for PSP patients. Our neurologist routinely prescribes it because she said it usually makes PSP patients "feel a little better". Not sure if it did or not, as my wife rarely communicated during her last 2 years with PSP.

As to Botox to the eyes, I think it's worth it based on where the patient is in their progression. Early on, my wife would have great difficulty with her eyes, and would often take her finger and try to keep one eye open. They would water a lot due to the limited blinking. And she would get double vision a lot. Had great difficulties looking up, which is why I took the TV off the wall (was mounted over our fireplace) and put it much lower to be at her eye level while sitting in her recliner.

My wife had Botox injections 5 times. The first 3 times was performed by her neurologist, who would do this in an outpatient hospital setting. These treatments were much more expensive, although we were lucky our insurance policies paid for the majority of the expense. The neurologist generally got $1300 for performing the procedure and the hospital got about $2400 for their facility and for the drug. Of course their billed charges were about triple that. So make sure you use an in-network provider and make sure you get a prior authorization approval, as many plans require these and you want to make sure they don't think you're getting this for cosmetic purposes. Each time the neurologist would inject the botox, she would use a tiny syringe and insert it at each side of the eye and once directly above the eye. I always hated watching them do it to her as she would definitely wince with each injection. But Kim was one tough cookie. They always say it takes several days to get the full effect. I would usually only notice minimal improvements.

The last 2 injections were administered by an eye doctor (KY Eye Care). His charges were MUCH less, as there was no facility fee. He received around $1200 for everything. He also would inject the botox above each eye brow (3 spots each) and below the eye, above the cheek (3 spots each), in addition to the 3 areas near the eye. Each time Kim received these, she looked like a hoot owl for several weeks. It definitely worked, but maybe too much, as I would see her laying in bed at night with her eyes wide open. And of course, when you don't blink, it causes the eye to dry out and then start to water to compensate it. On her second visit with the eye doctor, I told him about this, so he lowered the dosage some, which seemed to help.

We stopped getting any more during her final year with PSP. She never really had much desire to get these anyway and I only wanted her to get them because it made her look a bit more normal, by not having one eye (or both) closed all the time. But I think having one eye closed actually minimized her double-vision. I know my dad gets double-vision with a disease he has (myasthenia gravis) and it helps him to wear an eye patch on one eye to minimize the double-vision.

Not sure if all this info helps. I'm on the fence as to whether it was a good thing or bad thing. But if the patient is in year 3-5 with PSP, I would lean for it.

Best of luck,

Ketchupman

[Greenkerrycounty in reply to ketchupman]

Thanks for your reply. Very sorry you had to go through all of the ups and downs.

[Christine47]

For my husband's eyes (double vision) we still just use acupressure, which works for now.

My husband does take Amantadine. I wanted to lower his carbidopa-levodopa which he takes at the same time. Perhaps unrelated, but when we did his resting myoclonus increased. His Los Angeles,CA neurologist wants him to stay on the amantadine. I do know it does something, but what is a question. When he had too much, he hallucinated as did a friend of ours with PD. Funny and scary at the same time.

My new line of attack is on homocysteine. I noticed that concurrent with his diagnosis in 2013, his homocysteine went up to dangerous levels. In doing a little research, it seems that L-dopa raises homocysteine, which is neurotoxic, and tau phosphorylation. Neither is good.

jneurosci.org/content/32/27...

life-enhancement.com/magazi...

Don't know if this helps.

Christine

[Greenkerrycounty in reply to Christine47]

Thank you for your helpful reply. Have you been able to make any progress with your "new line of attack". How is it applicable? Do you think L Dopa is prescribed too much?

[Fhall9600]

Amantidine prescribed by a Mayo neurologist showed no difference. It is probably good if there are memory problems, but trials for PSP were not positive. It is not harmful

[Greenkerrycounty in reply to Fhall9600]

Really appreciate your answer. Good luck to you

[daddyt]

I'm into my second year with Botox injections for blepharospasms... uncontrollable and excessive blinking. I have it done every three months... 5 injection sites around each eyelid- upper and lower. I wince a little each injection, but its worth it.

[Wishdoctor]

This is the medicine my dad was just taken off of. He was taking it in combination with L-Dopa. His falls increased substantially. He broke four ribs, was falling routinely, started thinking the amantadine was to blame, so stopped, and falls lessened. Then, without telling my mom, started taking it again, and fell and banged himself up pretty good twice in a twelve hour span. Neuro agreed it was best not to try it again, so now he's off it.

[Greenkerrycounty]

Thanks for your reply. Will watch for falls