This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By margie1627
#6077
I am surprised that there is no response or discussion of the very interesting report posted by Gloria.
Complete resolution os symptoms of Primary Orthostatic Tremor with Perampnael. Has anyone tried iT
or know anything about it? This sounds very exciting to me. I will follow up with my neurologist in early July.
Anybody else excited about possibilities?
By Ann Dodd
#6079
Brings back so many memories to me. Doctors not knowing what I had. It was so frustrating & made me think I was imagining it. It graduated, got worse & I eventually found a Neurologist, who told me what I had. Then had DBS for Primary Gait Freeze. That helped me so much for 7 wonderful years. Had to eventually have the batteries switched off as onewire snapped & the other seemed to be shorting. I am now struggling with slight dementia & walking has worsened. Hope you all learn that you never give up even though the odds are against you. Have faith in yourself & teach yourself to walk again, even if it is slowly with aids. Keep going my friends. Ann
By drcraige
#6140
There has been a lot of buzz about Perampanel on Facebook. In fact, we have created a Facebook Page dedicated to following fellow POT Members presently taking the medication. Seeing some positive signs from people. Anyone interested in following and gaining information join us. Please note we do require answers to a few questions to gain access. Also, since we have a mandatory Membership survey to be taken once you are a member. The purpose is to gather information so that we can return trend information back to the members at large. Presently we are doing the best we can to conduct what we are calling a "Clinical Online Study"using measured metrics that members are recording. This is in addition to their reporting their progress. The link for the Facebook Group is: https://www.facebook.com/groups/464612497281739/
By Lake of the Woods
#6177
It would be interesting and beneficial if more of the results of this drug could be posted on this website.
I don't do Facebook so would be left out of this information.

Thank you if you can help,

Peggy
By Lake of the Woods
#6179
Hello,
I was aware of this study but thank you for sending this link. I actually forwarded it on to Dr. Torres.
I had advised him of this drug previously and how it is helping some people. He replied that he just hopes it is sustainable - which is the big question.

I would love to see comments by people trying it who report into the Facebook but that may not be possible.

Thank you
peggy
By Judyt
#6188
I have gone to the website, answered the questions, received an acknowledgment but am still unable to access the website on facebook. Why isn't there more discussion about this potential help on this website? Is anyone else taking the Perampanel? It is very disappointing. There is only information about one 75 year old woman... Is this a hoax?
By Theresaann
#6189
I can't understand why there is minimal conversation and sharing either. I check the response dates and get discouraged. I can only state that, so far, after three years into the condition and researching all the available meds and their possible side effects, I do not want to take any of them. I discussed this with my neurologist and she agreed and stated that nothing helps anyway. I didn't get any response to the following from anyone from the forum: Has anyone found swimming helpful? Equine therapy (riding specially trained horses under supervision - it works for MS). Muscle relaxants??? No answers to any of these. It's very disappointing. But I continue to look at the website just the same. Good luck with your condition.
By Lake of the Woods
#6191
If you look at previous posts on this subject, you will see that I asked that someone from Facebook share this info with us on the website for those that don't do Facebook.

I did get a link from Adrian in Ireland and thank you to him - check previous posts for link.

It told of a study done in Spain on this with good results - you can view this.

I guess the next best thing is to find someone who does Facebook and ask them to help get info.

Peggy
By Grammiex4
#6192
Hi Peggy:
The results from Perampanel (Fycompa) seem to be varied. Some people are helped by the med, some have bad side effects. The cost is also prohibitive for most people in the US. Some Dr.s are giving it to OT patients......even Dr. Torres in Nebraska prescribe it for a patient who came for consultation with him. It helped her, but unfortunately the side effects out weighed the good as she became very depressed. There are many people trying the drug and having good results. Others, as I said have good results, but bad side effects. So it's a give and take situation. At first, I think we all thought this was a miracle drug, but after some time we've heard from those taking it that it's not the cure we once thought it might be. So many different forms of treatment are being sought and tried.
Hope you are well. I am ready for another meeting and would love to see you.
Pat
By Lake of the Woods
#6193
Hi Pat,
According to my info, not everyone taking this has had bad side effects - in fact, some have had no side effects and very good results.

Everyone is different so we cannot judge the drug too quickly.

Peggy
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