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
By Jolanda
#6212
I've read a post on a Dutch facebook-page about OT. It's in French. I'll post it down below, along with an English Google translation. It doesn't seem to be hallelujah all over. There seem to be serious side-effects, and worse: it's said to give a terrible rebound and even stops working after 4-5 months. And withdrawal problems.

"c est à long terme à partir du 4e ou 5e mois que tout se complique. je souhaite que pour vous tous, ca se passe mieux que nous.
beaucoup ont eu du résultat rapide, puis après le 4eme ou 5eme mois toutes les améliorations ont commencé à disparaître, puis ont complétement disparu, avec en plus des effets indésirables qui ont obligé à sevrer le fycompa et un résultat effet rebond terrible : les symptômes sont revenus bien pire qu'avant de prendre le fycompa. Nous avons une dizaine de cas ainsi. D'autres ont stoppé à cause d effets indésirables venant à l'augmentation au 4mg et ont aussi le problème de sevrage très lent, très long, très difficile à vivre à cause de la demi-vie-longue du médicament. Il faut attendre quelques mois pur être sûr ! ca n'a pas l'air d être le cas pour ceux qui ont commencé le fycompa en juillet 2018, ont voulu continuer espérant que le mieux viendrait, mais rien du tout à part des graves problèmes de rebond important et proportionnels à la durée de la prise du fycompa. Il faut bien réfléchir avant de décider ! ce médicament est mystérieux, il agit immédiatement, puis il stoppe, il agit pas du tout, il donne des vertiges, des effets d ivresse, et plus longtemps on le prend, plus long et plus difficile est la longue période de sevrage. Aucun français n'a obtenu le résultat tant espéré ! Nous avions une bonne image du fycompa, mais après plusieurs mois tout s'est dégradé et nos symptômes sont devenus pire après le sevrage. Il faut le savoir. Je suis à votre disposition pour en discuter si nécessaire.
nous avons voulu essayer ce fycompa depuis Juillet 2018, nous n'avions pas peur au contraire nous avions de l'espoir. Il donne trois sortes de résultats difféents parmi les TOP Français : 10 qui ont dû arrêter avec la venue du probleme de rebond qui va etre très long - 5 qui n'ont pas obtenu d'amélioration et 5 qui ont une amélioration très légère, trop légère pour être satisfaisante. 5 continuent de le prendre avec l espoir que l'amélioration viendra .... Voilà nos résultats. On ne peut pas dire que le médicament est miraculeux pour le TOP !"

"C is long-term from the 4TH OR 5th month that everything is complicated. I wish that for all of you, it's going better than us.
Many have had a quick result, then after the 4TH OR 5th month all improvements started to disappear, then completely disappeared, with in addition to the adverse effects that have forced to wean the fycompa and a result effect Terrible Rebound: the symptoms came back much worse than before taking the fycompa. We have a dozen cases like this. Others have stopped due to unwanted effects coming to the 4 mg increase and also have the very slow, very long, very hard withdrawal problem, very difficult to live due to the half-Life-long of the medicine. We have to wait for a few months pure to be It doesn't seem to be the case for those who started the fycompa in July 2018, wanted to continue hoping that the best would come, but nothing at all apart from the serious problems of bounce important and proportional to the duration of The catch of the fycompa. You have to think about it before you decide! This medicine is mysterious, it acts immediately, then it stops, it does not act at all, it gives dizziness, effects d drunkenness, and longer we take it, longer and more difficult is the long period of withdrawal. No French got the result so much hoped! We had a good image of the fycompa, but after several months everything has deteriorated and our symptoms have become worse after weaning. You have to know. I am at your disposal to discuss it if necessary.
we wanted to try this fycompa since July 2018, we were not afraid on the contrary we had hope. It gives three kinds of results results among the top French: 10 that had to stop with the coming of the rebound problem that will be very long-5 that have not obtained improvement and 5 that have an improvement Very Light, too light to be satisfying. 5 continue to take it with the hope that improvement will come.... here are our results. We can't say that the medicine is miraculous for the top!"
By gazunni
#6227
I went to my doctor today and got a prescription for Perampanel. This is a drug neither he or the pharmacist were aware of. It is an approved drug in Canada and covered by my insurance. I will do my best to report on effects/results over the coming months.
By Lake of the Woods
#6228
Hello,
I have emailed the person from Facebook who was compiling info on this drug but am having no luck contacting him.

If anyone has any ideas on how to get info that he gathered - on to our website - please advise.

Thank you

Peggy

Thanks, will check that out!

Deep Brain Stimulation

I feel the same way about DBS!! Acupuncture works […]

Breast MRI problems

Good to know! Thanks for sharing.

"Participate in a support group"

Hola to you too. But, No se habla Espanol.