Posted by: Delaine Inman ®
01/01/2003, 22:40:10
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I am very happy you found the combination of medications that have given you relief of your symptoms. You say you will discontinue your medication in 2 months. I'm not sure you can say you are cured if you have not stopped your medication and have no symptoms after a long period without the medication. I hope you are cured and you won't have anymore symptoms. If you have been able to lead a normal life on medication without side effects, that is something we would all be happy to have. Remission or no symptoms while on 3 medications is still a wonderful miracle and something we all pray will happen to us. I will certainly ask my neurologist about these medications. Please let us know how you do after you stop your medication. Why does your doctor want you to wait 2 months to stop? Have you stopped before and had no symptoms and if so why did you start back if you are cured? I am a nurse and very interested in knowing more details. We all cling to the hope that a cure will come. We all know what works for one doesn't work for everyone. Have any studies been published by the neurologists who have cured patients with these medications? How many patients have had the same results? Are all three medications by prescription only? Does your neurologist know if they are available in the USA and under what names? Hope you continue to do well. It is nice to hear that something has worked for you and others. rustyfox@charter.net is my email address if you wouldn't mind giving your doctors name and location and background.
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Posted by: kamal goel ®
01/02/2003, 13:52:28
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My doctor has advised me to start reducing the medication. He does not want to stop all medication right away. He has reduced my Pacitance dosage from 3 to 2 per day. I have done that for 3 weeks and there is no chnage in condition. After one week I will reduce Pacitance to 1 dosage per day for 3-4 weeks and then discontinue completely.There are absolutely no side effects. I am working as a normal person. I have asked NIH/NINDS to start looking for these drugs so that FDA can start testing in US. There are lot of drugs that are not approved by FDA but people still get these medications from Europe or elsewhere.
I have no financial gain in medications or treatment. I do not own stocks in these companies.
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Posted by: Shanasy in IL ®
01/02/2003, 08:00:46
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Good questions Delaine...as always! I sincerely hope Kamal that you get back to us soon on this. I researched all 3 drugs (which I bet a few others have already done too) and I thought it was interesting that Piracetam is a "smart drug" with supposedly "virtually no known toxicity or contraindications" How cool would that be to not only get rid of the blephs and increase our memory/intelligence at the same time? lol!. I also noticed that Rivotril is the same as Klonopin - which I know many have taken for the blephs with unpleasant side effects, right?. I too am interested in finding out if this could be a cure as opposed to just another drug to control the blephs. Big difference. Please Kamal let us hear from you again with more details! Just curious...how old are you? I noticed that there were many precautions for anyone over 60 to take Pacitane. Shanasy...awaiting more news
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Posted by: Delaine Inman ®
01/02/2003, 08:43:30
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When I got the dose adjusted to my own body and needs, I've had no side effects taking what I need at 1/4mg every 4-6 hours. I've been on the same dose for 2 years. There are days I take it 5 times if I'm at my worst and 3 times if I'm at my best. That hasn't changed in 2 years and I was terrible before the Klonopin even with Botox and surgery. It would be neat to be able to take 2 more things and get my life back. Once again as we all know from experience what works for many or for some does not work for all. I'm willing to try whatever with my neurologist's supervision. The Botox and surgery just haven't given me the results I need to be able to work or drive in a predictable way and it is so frustrating.
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Posted by: Shanasy in IL ®
01/02/2003, 09:31:26
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OK thanks for letting me know. It seems so many people used to talk about Klonopin before but I don't hear much about it now...but then I haven't been reading much on the board anymore so I should keep my mouth shut. lol!
BTW... are you doing your own research on these drugs? I thought it was interesting that I read that the first drug listed does have effect on the basal ganglia and helps Parkinsons - which is encouraging for us since many blephers take the same drugs as those for Parkinsons! Stay in touch!
Shanasy Please let me know what your neurologist's comments on these drugs used together. I was very dissappointed in that mine pretty much ignored my requesting an inquiry into the albumin thing. I know....he's too busy! Botox isn't helping me much either!
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Posted by: kamal goel ®
01/02/2003, 13:44:19
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I am 40+ years old. Pacitane is the real medication for curing the Bleph, other medications are to strengthen the nerves. My doc has told me that it will require a combination of medications to fight the symptoms. The medication may not be available in US. I would like NIH/NINDS to start testing these drugs in US. Hence I have written to head of NIH/NINDS. Following is the reply from them. I am not a fake person. I am neither promoting these medications for any financial gains. I do not own stocks in these companies. I have posted the mesage since Andy Karter of Bay Area (BERBF), CA has asked me to write a message on BB.Dear Kamal Goel:
Dr. Landis asked me to respond to you. We are doing some research on
blepharospasm in the Division of Intramural Research, NINDS. It is
valuable
to hear about your experiences. All this type of information is useful
in
increasing our understanding in seeking the cause and cure of
blepharospasm
and related focal dystonias. I am certainly pleased that you are
better.
Best wishes.
Mark Hallett, M.D. >>From: kamal goel <adventure62@yahoo.com>
>>To: "Landis, Story (NIH/NINDS)" <LandisS@ninds.nih.gov>
>>Subject: Blepharospasm can be cured without BOTOX
>>Date: Wed, 1 Jan 2003 21:09:50 -0500
>>
>>Dear Dr. Landiss,
>>
>>I am sending this e-mail to you so that NIH can start
>>looking for this type of medication and treatment in
>>US. I do not know the right person at NIH who start
>>looking at these medicines.
>>
>>Kamal Goel
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Posted by: Delaine Inman ®
01/02/2003, 09:01:20
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Did you hit the wrong key for this? Rivoiril is Klonopin or Clonazepam which many of us do take. It certainly improved my condition after a disappointing 2 years with Botox and surgery. Never mind I see it is spelled both ways and is the same drug.
--modified by Delaine Inman at Thu, Jan 02, 2003, 09:05:32
Modified by at Thu, Jan 02, 2003, 09:05:32
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Posted by: kamal goel ®
01/02/2003, 14:06:57
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the name of medication is Rivotril (Clonazepam) 0.5 mg and second medication is Piracetam (Neurocetam 800).Name of my consulting doctor is Dr. Prasoon Kumar
MBBS, MD ( Neuro Medicine), MRCP (UK)
call him at home in morning after 8 AM Pacific Time. He is based in India and there is 14 hrs of time difference from west coast. phone number1 011916122687050
phone number2 011916122666437. You may mention my name to him. It is your choice. I do not get paid by sending him patients. Kamal Goel, Ph.D
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Posted by: Delaine Inman ®
01/02/2003, 14:16:53
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Thank you so very much for the information. It makes sense to wean things gradually. Clonazepam can be very dangerous if stopped abruptly. I hope you stay symptom free, but the worst thing hopefully is that if they do return, you can resume medications and symptoms will leave again. Hey, I can live without symptoms if I have to take 2 more medications in addition to my Clonazepam! Good luck and keep us posted on how you do. Are you male or female? I noticed PhD after your name on my email. What do you do for a living?
--modified by Delaine Inman at Thu, Jan 02, 2003, 14:32:04
Modified by at Thu, Jan 02, 2003, 14:32:04
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Posted by: June in Toronto ®
01/02/2003, 09:55:34
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Thank you for posting, Kamal, and welcome to the bulletin Board. You have give a lot of beb patients hope that there is a cure out there for us. I do pray that when you stop taking the medictions everything remains good for you. We would be SO HAPPY to hear that it is and other details suggested by the other posters. Can you give us your doctor's name, location and background, as Delaine suggested - here on the bulletin board? This would be most appreciated so that we can follow up with our own doctors? I live in Canada and really would want my doctor to know about this. THANK YOU and Happy 2003 to you.June in Toronto
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Posted by: Ann Doyle ®
01/02/2003, 10:37:24
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Kamal please send us your DRS. name and address. We have people all over the world on this site and certainly many from the US, Canada and Australia. Maybe some of us live close enough to go to him/her. Ann Doyle
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Posted by: Delaine Inman ®
01/02/2003, 11:09:09
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2 of the 3 drugs are by prescription in the USA. The 3rd one (Piracetam or Nootropyl or Nootropil) are only available over the internet. I found a site called Biogenesis that sells it. At the dose you take it would take one and a half bottles a month. 2 bottles with shipping and handling would cost 39.29. That is not bad, but will raise some red flags for many who have tried various products like this that haven't helped. We often get people who try to take advantage of us or who claim "cures" and even though they may have helped some people the products are not a cure and may not help anyone else who tries it or help only a few. I am open minded and willing to try things, but I have spent a lot of money on things that didn't work for me. So please give us a lot more info so we can make informed choices about what has worked for you. Waiting to hear more from you. Thanks.
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Posted by: Delaine Inman ®
01/02/2003, 12:45:55
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If you are really a BEB patient, you need to post more info now or post will be deleted because one of the things you mentioned can only be bought out of the country and is not FDA approved. This is a huge red flag by the BEBRF who monitor both the BEB & Dystonia BB sites for products and companies and individuals who might have money as an incentive to post such claims of cures. Delaine Inman
--modified by Delaine Inman at Thu, Jan 02, 2003, 12:54:38
Modified by at Thu, Jan 02, 2003, 12:54:39
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Posted by: ClaireW ®
01/02/2003, 14:53:40
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Thanks kamal for your informative postings. I was interested to note that pacitane has a similar action to Atropine. When my Bleph/Apraxia first started i was misdiagnosed with MG as I proved positive to the "Tensilon" test..they inject a cholinergic drug...but only after injecting you with Atropine. My eyes very quickly and dramatically opened... so they deemed the test positive..but were surprised at the rapidity and fleetingness of my response!i wondered for ages afterwards if it was actually the atropine that I had responded too...not the real test drug...now i wonder even more...I'd be so interested in trying Pacitane..i am going to take a copy of Kamals posting to my neuro and ask for his opinion when I next see him in march..
Claire
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Posted by: Delaine Inman ®
01/02/2003, 15:21:43
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Remember Scopolamine patches help many with BEB, so Atropine is related and would work for some as well.
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Posted by: ClaireW ®
01/02/2003, 16:35:08
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Do scopolamine patches have to be prescribed by a doc..or can you buy them over the counter?
Claire
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Posted by: Shirley-Arkansas-USA ®
01/02/2003, 17:02:13
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Claire, they are prescription. I believe that they were taken off the market for awhile but it is my understanding that they can be obtained once again with a prescription.Shirley in Arkansas
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Posted by: Shirley-Arkansas-USA ®
01/02/2003, 16:56:19
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Hi Kamal
Thanks for posting the above and later informative posts of these particular drugs that have helped you. I'm not surprised that the combination has helped you.
From what I can tell by my internet researching (as has Delaine), Rivotril is the same as our US Klonopin which many of us take. Piracetam acts as a Central Nervous System stimulant-possibly helping neurotransmitters do their job more effectively and this is enhanced by taking Pacitane, which has anticholinergic properties. Many of us are also helped by anticholinergic drugs such as Artane, Scopalomine, Pericatin and Benadryl.I have posted in the past that a combination of Adderall (CNS stimulant drug), Benadryl and Klonopin provide me with the best relief from my symptoms that I have been able to obtain. It did not cure me but did help remarkably well in controlling my symptoms. In general, you've gotten relief from the same combination of similar drugs that I did albeit different drugs but with the same actions. I was unable to continue the stimulant part of the combination as it was contributing to a fast heart rate and elevated blood pressure. I could definitely tell when the medicine was wearing off as my symptoms would return full force. I then tried using the drug Provigil (another CNS stimulant) but experienced quite a bit of nausea with it. I just wanted to let you know that I think that the particular combination of drugs that you mention probably would benefit some people with BEB but I'm not so sure that they would be cured. Could you tell us a little about the symptoms of BEB that you experienced? Were you symptoms mild, moderate or severe to the point that you were non-functional? You have been very forth-coming in your answers to our questions and we all appreciate that. I'm glad that you are doing well now and hope that this can be a "cure" for you. Thank you for posting about this on the bulletin board. I would like to counter your statement about there being "no side-effects" from these medications, though. There can be side-effects (some minimal and some major) from any of these three medications. A web search will list multiple side-effects from all three of these drugs. The info on Piracetam did state that it was well tolerated but also listed agitation, nervousness etc. as side-effects(as would be the case for most or all CNS stimulants). It is not FDA approved so you won't find the side effects that are listed as they are with an FDA approved drug. I don't want people to think that it couldn't have serious side-effects. Any of the drugs should be taken under your doctor's supervision. I certainly think that it is worth looking into. Thanks again for posting the information. Shirley in Arkansas
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Posted by: Delaine Inman ®
01/03/2003, 09:26:34
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Thanks for reminding everyone about the possible side effects and the great summary of everything. As always great post and I appreciate it when you get long winded and say it all! Wondered where you were and now I know........you were reading those pages and pages and pages and organizing the post. You're the best.
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Posted by: kamal goel ®
01/03/2003, 15:31:18
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I was told by my Neurologist that there no big side effects. He told me that your throat will feel dry during the coarse of medication. Other side effect is the dryness in the eyes. I put lubricant to reduce the dryness. My doc has told me that dryness is coming from Pacitane. Dryness will disappear once I stop pacitane. Previously, I have used other medications that used to cause depression and anxiety. I could not drive or do any thing. My current medication has helped me to do things the way I used to. MY BERB was moderate and getting worse day by day. My guess is that Naturopathy has helped me a lot. It has cleaned my body from toxins. I think madicine showed the effects quickly because my system was clean. I have reduced the medication and I am feeling fine. Next week, I will reduce the medication further to see the effects. My doc has treated several cases of dystonia in India. He has tried this medication on several patients and they have no relapse. In the worst case even if relapse comes back to me, I can continue the medicine for some more time. My doc thinks that symptoms are CURED and not supressed. Lot of other medications try to supress the symptoms. He has told me that Clonazepam relaxes the eye muscle while Pacitane is producing a chemical that was not produced in my body. Neurocetam 800 is for strengthening the eye muscle. If some one has doubts about me, just talk to my family and relatives. They can tell you what I was before medication. I continue to take Home medication also. I am hoping that this medication is working for long term so that I won't have any relapse. Homeo medication has no side effects.
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Posted by: June in Toronto ®
01/03/2003, 17:02:18
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Please forgive us Kamal for asking so many questions, but we just want to understand fully your experience. Before you came along we did not have as much hope for a release from Blepharoospasm - now we do, but we need more answers I need to say.Can you tell us what kind of homeopathic medicine you might have taken? I went to a homeo. and one med. gave me severe (and I mean severe) migraines, two other meds did nothing. I've also been to a wonderful Naturopath (who I have great respct for) who is also an MD and a Chinese med. doctor - nothing he did for me helped enough to stop the beb from continuing. Others on the bb have tried acupuncture - laser and/or needles, some have gone the cleansing route. I realise you stated that you can't promise/guarantee a cure for us - but with questions being answered, we may have more routes to follow. THANKS AGAIN for all you are helping us with, information wise. God Bless you. June in Toronto
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Posted by: ANNA FUZIE ®
01/04/2003, 01:04:56
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Hello,
Just a comment...there are many homeopathic medications that can be and are as dangerous as any other FDA regulated medication. Everyone responds differently but it is important to realize that because there are homeopathic medications it does not mean that they are without side effects...I am sure most know this already but as an RN and someone who does believe that certain homeopathic medications can be of help...they are often not without their own dangerous side effects. While I am far from cured, I most definitely have had a remission of the symptoms that I once had...and in one of my recent posts...I contribute it to several things but I am surely not cured. There isn't a one of us that wouldn't love to have a "cure" found for this devastating and most frustrating affliction.
Anna
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Posted by: June in Toronto ®
01/04/2003, 07:52:16
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Hi Anna, personally I thought homeopathic or naturopathic meds might help me, especially with the eye spasms. I didn't expect a cure, but had to give them a try. The only thing I've found is Bilberry which helps with my light sensitivity somewhat. I will continue trying other ways of helping myself until a cure is found. I'm so glad you have a `remission of symptoms' - it certainly helps you continue your life in a more normal way.June in Toronto who was up late last night and up early again this morning - darn!
--modified by June in Toronto at Sat, Jan 04, 2003, 07:53:01
Modified by at Sat, Jan 04, 2003, 07:53:01
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Posted by: June in Toronto ®
01/03/2003, 10:50:42
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You've given us a lot of information, Kamal, and for that I thank you very much.Can you continue with telling us about Blepharospasm symptoms - how severe or mild they were? We would all be very interested. Thanks a lot in advance June in Toronto
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Posted by: Moderator-JB ®
01/03/2003, 11:20:17
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Kamal:Welcome to the BEBRF Blelpharospasm Bulletin Board. We are very happy that you have found relief with the medications that you are now using. Botox is a temporary 'fix' for some of us who have Blepharospasm, as are other medications and helps. It is not a cure. As others have requested, please share with us your own story of symptoms and how you started on this path. It is helpful to others. We, the Moderators, would urge everyone to read the following statement written by our BEBRF Vice President, Don Peaslee. http://www.blepharospasm.org/forums/bebx/policy.html We sincerely wish you continued good health and progress with the steps you have taken. The Moderators
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