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    • #15264
      Jean Mellano
      Keymaster

      A friend of mine said he was over-medicated and his Dr. cut back his C/L dosage.  He normally has low blood pressure and apparently the C/L made him worse and he was fainting.  Do you have low BP?  Have you had to cut back on your meds dosage because of that?

    • #15565
      Manuel Fernandez
      Participant

      Yes, I did and this has been very traumatic in my experience, Many years ago, when our faithful friend Parkinson was totally out of my thoughts, my family doctor measured my blood pressure and was very surprised. With a smiling face she told me “With this low pressure you have you should not be alive.” She asked me whether I felt moments of drowsiness or sudden states of weakness and I replied saying that I have never felt any strange symptoms. With some fear I asked her whether there was something we had to do about it. She answered: “If you feel fine then you can keep it. No fears. In several ways this is beneficial to you.”

      This might have been beneficial in the past but no longer so under the company of our friend Mr Parkinson. On being prescribed Sinemet I simply collapsed with frequent episodes of syncope and states of lethargy, besides the constant nausea and vomiting, with all that keeping me invalid in bed all the time.  Naturally I informed my family doctor and she told me not to wait for the next programmed neurological control and slowly start dropping Sinemet. I did so and now feel much, much better, happy with my old symptoms and back to doing and making things I had had to abandon because of Sinemet. I shall see what the neurologist will say in the next control, but under no condition shall I come back to Sinemet for my treatment. I am aware, nevertheless, that Sinemet is fundamentally important and beneficial for most PD patients, mine being maybe a unique case due to my permanent state of low pressure.

    • #15567
      Jean Mellano
      Keymaster

      wow, if I may ask Manuel, what was your BP before PD diagnosis?  What PD symptoms did you have that Sinemet helped?

    • #15568
      Jean Mellano
      Keymaster

      wow, if I may ask Manuel, what was your BP before PD diagnosis?  What PD symptoms did you have that Sinemet helped?

    • #15585
      Manuel Fernandez
      Participant

      My historical values for BP are so easy for me to always remember. The average was 100/50, Now that I dropped Sinemet I feel my state as a little better than in the period prior to starting with Sinemet. It may be, I thought, that besides all the trauma I suffered with Sinemet, on dropping it I feel better probably because Sinemet not only caused my troubles but also produced a beneficial improvement on my Parkinson condition. It may happen now that without Sinemet those positive effects might wear off but so far and for the last month, I just feel so happy with my current conditions and I am in full harmony with our faithful friend Mr Parkinson. I should add a detail that might be relevant: I am now back to my writing up a book I had left unfinished and that helps me to keep a long period of fasting during the day because I have my last dinner at 7 pm, work on my writing till 2 o 3 o’clock at nights and get up late the next day, at about 11 am. I then skip breakfast, except for my big glass of pure orange juice, and have my lunch at 1 pm. So, in practice I fast everyday from 7 pm in the evening to lunchtime the next day. It might be an illusion but I have the impression that it does improve on my condition a little bit. Time will tell.

      Thanks for asking dear Jean.

    • #15590
      Jean Mellano
      Keymaster

      manuel, i am glad you have found some balance.   i have heard that fasting like you are doing is beneficial.  i try to eat my last food by 6pm and dont have my next meal until 7am the next day.  not sure it makes a difference, but i am not about to stop to find out.  who knows, i could be worse  lol..

    • #15594
      Manuel Fernandez
      Participant

      You are right Jean. I do not think anybody should try unusual things. It is my anomalous case of constant low blood pressure that prompted me to act in the way I did.

      A related question: has the Sinemet supply eased now? I never knew the outcome.

      My best regards to all

    • #16510
      Jacque Walston
      Participant

      I have always had low blood pressure in the range of 90/60.  Since diagnosis in 2014 it has not seemed to change much.  Still have the blacking out when standing from a squat, but I have long since learned how to deal with that.  I suppose it is more dangerous now with PD symptoms and age added and increased likelihood of falling,  But I’ve learned to watch out for myself.

       

    • #16514
      Manuel Fernandez
      Participant

      Jacque’s comment helps me as a prompt to provide an update to my low blood pressure difficulties and its interactions with Sinemet. The frequent serious difficulties generated by that combination rendered me a complete invalid with the frequent episodes of syncope and the complete inability to keep standing and walking. One day when I was taken to hospital for an urgency connected with an urinary infection, as it was a very busy day at the emergency unit I had to wait for about two or three hours thus missing my midday Sinemet pill. On arrival home, as we had guests that evening, I immediately began my cooking and dinner was ready right when the guests arrived. So, we had dinner as they came and I missed my evening Sinemet pill. When the dinner was finished, as I stood up besides my chair, I began to help clearing the dinner table and, to my surprise and wonder, I was able to walk as had not done for the past two years. The next day I rush to see my family doctor and showed her how dropping Sinemet had left me in excellent conditions. Then she agreed to let me stop Sinemet and see how the situation would evolve. Nearly four months have passed now  and my PD condition began to worsen.

      I have therefore surrendered to Sinemet but under my terms. After several alternatives were explored I have finally settled with a reduced dose; half the originally prescribed. I therefore take just half a pill three times a day. There is still some discomfort but I can stand it and, after a month with this change, my condition has improved. I informed my family doctor and she said it was fine to go ahead like that and see what the neurologist would say in the next control.

    • #16527
      Brenda Ward
      Participant

      New to this groups posting..BP? Mine has run on the low side most of my adult life. Have had SLE for 30+yrs (just a little health history there😊) dx’d with PD and REM-SBD in 2014. I was volunteering on the cancer/infusion floor and moving from one area to another it seemed as if I was overcome with dizzy!!🤪 nurses began taking my bp…seemed it was dropping anywhere from 20-50 points from sitting to standing…ended up in ER several times..next dxd.nOH.  Mix all these together and living in this body can be a mystery some days worse than others. Had a really bad REM-SBD episode a few weeks ago..seems as if my coffee table and I one heck of a brawl…needless to say it won! My daughter lives with me, but works at night. She has baby monitors around so she can film me should I have an episode. This one three of my drs got to view it…result now waiting on appt with neurosurgeon…mri shows compression fractures at T8:T9,and T10. I have just rambled..not really on topic, I apologize for being so wordy.😜😢😜😢

    • #16532
      Jean Mellano
      Keymaster

      brenda, no need for apologies.  we all need to vent sometimes and this forum is as good as any for that..  I am glad your daughter is able to keep an eye on you..

    • #16560
      Vickie Paul
      Participant

      Just a data point: My blood pressure has been on the low end most of my life. Never had problems with dizziness or fainting, before or after PD diagnosis (October 2013).

      I take C/L usually 3x/day, Sinemet 1x/day at bedtime.

    • #16575
      Jean Mellano
      Keymaster

      Vicki you can still buy brand name sinemet?  If so, where?

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