Going off meds

[12stargate]

How do you go off meds once yyou have been on

them for 5 years?

Here is a good song to llsten to:

youtube.com/watch?v=b4jwprF...(Not working as expected?)

Music sure helps me feel better.

Love and hugs, Eva

[Dap1948]

Yes, I'd be interested to hear how anyone has done it successfully. I'm attempting to reduce and am adopting three MUSTS.

1. Very gradually. I'm cutting tablets up, taking 3/4 of my middle dose and thereby reducing total daily dose by 1/12. It's a start.

2. Very gradually. Not reducing again until the brain is used to the first reduction.

3. Supporting the reduction with other therapy work... For me fast walking.

Love the song Eva

[12stargate in reply to Dap1948]

Hi Dap;

I am glad you like the song

Let me know how the reduction of the meds go.

I would do it the way you do it too.

In the meantime, I want to be sure I am powerwalking 3 x a day for 1 h.

Hugs, Eva

[Dap1948 in reply to 12stargate]

Hi Eva. I'm up to 50 minutes fast walking 3 miles x3 a week. Do you want a 'walking buddy' across the miles for encouragement and support? My email [e-mail]

[12stargate in reply to Dap1948]

I sure would Dap.

[e-mail]

Thanks a million.

Hugs, Eva

[JohnPepper]

Hi Eva. To answer your question is very difficult. When Dr Norman Doidge investigated my Parkinson's history he picked up a discrepancy between the story in my book and my neurologist's records. He found that I was initially prescribed Sinemet and Symetrel for the 1st 2 years. I have said in my book that only ever took Eldepryl, which is an MAO-b inhibitor. I do not remember taking those medications, it was 10 years ago at the time of writing my book.

This means that I came straight off those medications and went immediately onto the Eldepryl, without any remembered ill effects.

In addition to that, I took myself off the Eldepryl three times, the 1st 2 of which were only for a period of 6 weeks in each case, because the many of my symptoms had returned to an unacceptable level. The last time I came off I stayed off, and that was in 2002. In that instance I remained off the Eldepryl and it took 6 months before I was able to live a normal life again.

The biggest problem was my clumsiness, which was nowhere near as bad as it was at the time of diagnosis. This was caused by the poor coordination.

Without going through all the other symptoms that were not yet back to 'normal' I pressed on, determined not to go back to my neurologist for more medication.

I know of many others who have reduced their medications slowly, with no ill effect, because they were doing regular fast walking and I assume were getting the benefits from the increased dopamine in their brains.

I know only of one person who has gone completely off her medication but she is reluctant to tell me all about it in writing, I don't know why. She is very elderly, but she indicated in her last email to me that she was very well. I don't think she wants to get involved in any discussion on this subject.

If you or anybody else is regularly doing the fast walking and wants to slowly reduce your intake of levodopa medication I think you will avoid the side effects of the levodopa medication, namely the dyskinesia, and you will feel a lot better.

That is said as a patient and not as a doctor. You must make your own decision on this matter.

I recently spoke to another patient, who is now in her late 70's and who was doing very well with her walking and was not taking a lot of levodopa medication. She had continued to play golf until a couple of years ago, when she also stopped her walking. Since then she has had to take a lot more medication to avoid the tremors and is suffering from the side effects of the levodopa.

As they say in the classics, "You pays your money and you takes your choice"

I hope this helps you.

Good luck

John

[racerCP in reply to JohnPepper]

Hi John,

Keep contributing to this website because it is good to know there are people like you taking charge. As you know, going on two years since first noticed my tremor, July 27th, 2013, still not on medication and working with each symptom as it arises. Besides your book the best book I have read is the Doidge book. Both of these books should be required reading for anyone with a brain condition. The only question I have is the need to get my BP above 100. This has been very difficult for me. I did it for one half hour period last week but otherwise don't get it over 90.

I'll keep working on that.

Thanks for your encouragement to all.

[JohnPepper in reply to racerCP]

H Racer. Thanks for your encouragement, I do appreciate it.

Why are you so keen to get your blood pressure over 90. Don't you mean 'pulse rate'? If you do mean your pulse, what is your resting pulse rate? Mine is in the ow 50's and as such I also find it difficult to get it over 100.

Good luck!

John

[racerCP in reply to JohnPepper]

John, as soon as I hit "Submit Reply" I realized I had said BP instead of HR, heart rate. We are similar because my HR is about 46 when I awake and around 50s at resting. It takes a lot of effort to get it to 100 and over and during my hour or so of walking I don't think I get it beyond 100 maybe one third of the time but at least I have goal to work towards. Like so many PD and glaucoma patients my BP is also on the low side, especially the diastolic under 60 many times.

Keep involved and contributing because it's good to have company and modelling.

[JohnPepper in reply to racerCP]

Hi Racer

Don't worry about the pulse rate because you are increasing your resting rate by nearly 100%. If you had a 'normal' resting rate of 70 and increased it to 120 it would only be an increase of 70%

Keep doing the exercise!

Good Luck

John

[Anthonyian in reply to JohnPepper]

John you are a inspiration you give such good advice Kind regards

[JohnPepper in reply to Anthonyian]

Thanks Anthonyian.

John

[sharlacher in reply to racerCP]

Racer

Could you please give me the name of Doidge book.. I found two..thank you

[racerCP in reply to sharlacher]

Sharlacher, The name of the book is THE BRAIN'S WAY OF HEALING. Each chapter discusses a different modality and methods successfully used to return function and state of being to those suffering from a brain disease which PD falls into.

[sharlacher in reply to racerCP]

Racer

Thank you so much for the good information .. I need to make that a summer read,,,?i love this site I get so much information.. Thanks again!!

[racerCP in reply to sharlacher]

exactly how I feel.

[12stargate in reply to JohnPepper]

Thank you John;

I always appreciate your answers!

I think we are on the same wave length about this.

Tomorrow I see my cardiologist for my low blood pressure and irregular heartbeat!

Then maybe we can so something about my lightheadedness and I will feel like I can really start building up the time on powerwalking!!

Thank you for always beeing here for us John!

It is good to know you are here.

Much love and appreication from Eva

[JohnPepper in reply to 12stargate]

Thanks Eva. I have had an irregular heart beat for many years. My heart specialist called it an ectopic heart condition, which is not a problem. As you know, I am not any sort of medical person, nor am I a phydical exercise person but I am willing to bet that meaningful walking will do everybody a lot of good in every part of our bodies.

Good luck

John

[Hidden]

Hello Eva, could you tell me why you have decided to get of medication? I would really appreciate to know why.

[12stargate in reply to Hidden]

Hi Garlinge;

Because the meds are a temporary fix, which I surely have appreciated!!

Eventually they won't work anymore though, and I want to be prepared for that.

I want to be powerwalking for 1 h a day 3x a

week while I still can, and then start tapering off the meds.

Besides, the side effects of the meds are no fun!

Does that answer your question Garlinge?

Hugs and love to you from Eva

[Hidden in reply to 12stargate]

Hi Eva, thanks for your reply, it is much appreciated. The reason i asked is because my sister is taking Sinemet. The PD has been halted and she has reduced her medication, but doesn't seem to have the confidence to reduce further. She will be trying more alternative methods and who knows? Perhaps with a little more improvement she will reduce further. Hugs.

[12stargate in reply to Hidden]

Garlinge;

Going off meds sound scary.

But when I hear that they wear off in time, I am willling to try it.

First I want to be well on my way to 1 h powerwalking 3x a week.

I am so happy for your sister.

May she be guided in what her next step is.

Hugs, Eva

[Hidden in reply to 12stargate]

Thanks Eva, i try to encourage her to take control of her health. She will have the last word and only she can decide on the 'benefit to risk'. Her neurologist does not wish to increase medication and has been very encouraging and, quite surprised that she has had no increase of symptoms and has had some reversal. Everyone has been helpful, the advice of nurses in particular have helped her to stop worrying. Hugs.

[enjoysalud in reply to 12stargate]

Hi Eva, what were/are you taking, for how long, and what were the side effects? I agree on instituting your power walk to take the place of the medication before going off. My son takes 1/2 tablet of 25/100 Sinemet daily, down from 3 tablets a day. He had the guidance of his neurologist. He recently started (less than a week) bio active whey at the suggestion of his neurologist, and does a 3 mile walk daily, and a couple of afternoons a week 30 minute biking. He is experimenting for the summer. I also agree that John is an inspiration. I read his book.

[Hikoi in reply to 12stargate]

Will you start a thread with updates on how it is going Eva?

[12stargate in reply to Hikoi]

I will give it some thought Hikoi.

I am not ready to cut meds yet.

First I have to get this lightheadedness under control. Which I am in the process of.

Then I can get my speed walking up to speed Then I will be ready to start trimming back on the meds.

And yeah, then I can give you updates.

Hugs, Eva

[michaela13 in reply to 12stargate]

Eva I also have that low bp. It feels horrible. I think John is right though and walking will help to regulate it.

[12stargate]

I am taking Carbidopa-Levidopa 10-100MG 4x a day

Azilect 1mg 1x a day.

Ropinirole .5mg 4X a day.

Ropinirole 1mg 4x a day

I have taken this coctail for 5 years.

Sideffects are now almost violent ligth headedness.

I am so happy for your son that he is being able to cut down on his meds with the help of his neurologist.

I am in between neurologists,'cause mine is not giving me what I need.

I wish you and your son the very best.

I'd love to hear from you again.

Good hugs from Eva

[enjoysalud in reply to 12stargate]

Thank you! I will get back to you in a couple of weeks. My son plans to double the whey in a few days. According to the study, done with HEALTHY men and women, there were three groups, one given 15 grams, one given 30, and one given 45 grams. The 40 grams had the most success increasing lymphocyte GSH levels (two weeks of use increased it 24%). The 15 grams group showed NO success. The bioactive whey is expensive. So, I don't want to comment further until two plus weeks have passed, and I can give an observational evaluation. BTW, I loved loved your photo included on your hot weather question.

[Balderdash]

Hi Eva, interestingly your medication regime is almost identical to mine,except I don't take AzilectI.Ive been on the same medicines for 10 yrs and my current dosage for 5yrs.I do alter the regime within the range of the prescription to suit my needs. For instance I take Ropinerole 21 to 24 mg a day.I take 7 or 8 mg 3 x daily.Its a small variation but it works well for me and at least I am not having to add to my medication.Low blood pressure I function well on a very low BP,occasional dizzy episode if I stand to rapidly.

I dont get headaches,They can be due to dehydration which does cause headaches and low BP.It could be making the problem worse,its at least easy to fix cost nothing

Off meds I wouldnt recommend it,Im in a clinical trial that requires complete withdrawal for periods of 24/48 hours every few months.Its not pleasant and would be ill advised without medial support.I think the most positive step anyone takes is becoming manager of there illness and there treatment regime,working with your doctors to find solutions beyond medication is really important.The doctor hasnt got the illness and doesnt live the life.Explore the possibilties out there, because there is no one solution and quite a few that help.Good luck

[Kanu-Kamdar]

Dear Eva,

I took Medicines for three and a half years and then have not taken for last 8 years. My symptoms were mild and I felt meds did not give me any relief, so I tapered them to zero slowly over six month period. Here is a brief extract from my article "My Tryst with PD'

Quote

My medicine dosage was continuously being increased and from Oct 2004 and up to 15th Aug 2005 it was:-

1.     Inderal 40 Mg. 1/2-1/2-0

2.     Pankintane / Traphane 1-0-1

3.     Syndopa-110 1-1-1

 

I used to surf the net regularly and found many positive stories about PD patients. In particular I read an inspiring story of a PD patient partaking in a Marathon as well as how water exercise and swimming helped in maintaining balance. Inspired by this I took part in the 2008 Mumbai Marathon (in the Sr. Citizen section of 6Km)

In May 2004 I came in contact with a Chemical Engineer Dr. S. G. Kane, who was doing research in Ayurvedic herbs and its effects amongst other things on the neuro-degenerative diseases. While I was taking the dosage prescribed by Dr Patankar, including 3 tablets of Syndopa 110, I started on the three herbal extracts recommended by Dr. Kane. The herbal extract contained Amla, Brahmi, Jatamansi, Kavachbeej, Aloe, Trifala, Jyesthimadhu, Halad, Daruhalad, Ambehalad, Kachora and Khair

By mid 2004 my handwriting had deteriorated and my bankers had also observed it, as my signature had varied substantially. After starting on herbal extracts, I found my handwriting improved as I had a firmer grip on the writing instrument.

 

I had been a regular swimmer since the summer of 2003 as I had the facility in my new residence. I did practice yoga and visualization although not very regularly but I am a regular walker since childhood and since mid 2003 a regular swimmer. I swam regularly till June 2006 for nearly 40/50 minutes and averaged 4 times a week. My depression also reduced and began disappearing after practicing positive thinking and learning from friends with long term diseases such as Cancer, Macular degeneration of vision, Myostemis Gravis, etc.

 

I also took to nature cure and underwent diet control, massage, enema & steam bath with a young Naturopath Dr Kaustubh Salvi at Panvel. During 2004, 2005 and 2006 I took massage, steam bath for a month each year.

 

In August 2005 while I was under the treatment of my neuro physician Dr. Patankar and after informing him I started reduction of  my dosage and slowly tapered it to zero level on 29th January 2006, a period of nearly six months.

Unquote

If anyone is intrested to get a full copy of the article do write to [e-mail]

Sincerely

Kanu-Harshad Kamdar

[12stargate in reply to Kanu-Kamdar]

Thank you so very much Kanu!!

I will copy and paste your experiences for further referall.

Hugs and love to you from Eva

[Kanu-Kamdar in reply to 12stargate]

Eva! I forgot to mention two facts

1) Diet plays an important role in any health condition. I not only tended towards Veganism and increased my intake of whole and natural food and significantly reduced Dairy intake

2) while reducing meds I also increased time and variety of exercise including Physio Therapy and Yoga. I think your decision to increase distance and speed walking is a correct onr.

Good luck Kanu

[Hidden in reply to Kanu-Kamdar]

Well done Kanu, the diet is very powerful if done right. I have gotten my sister onto a near vegan whole food diet as i became vegan myself, and saw miracles. Her PD is halted and some reversal. Some will listen to you try, and some won't. I hope Eva does. Best of luck for the future.

[Hidden]

Morning Eva,

What a lovely song, thank you for sharing with us.

I would go and speak to your GP about your concerns (re medication)

Personally I wouldn't come of meds without consulting my GP first. This can cause more harm than good.

Take care and pls let us knpw how you get on

Elizabeth xxxxx

[12stargate]

Thank you Elizabeth so much!!

Love and hugs from Eva