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Dr. Okun

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Everything posted by Dr. Okun

  1. Dr. Okun

    Sinemet and Vitamin B6 use

    I actually just recommend any reasonable multivitamin and I personally do not obsess too much about what the exact contents are....until we have more evidence it is hard to know what to recommend but a single multivitamin a day is a good idea.
  2. Dr. Okun

    Elena Sanchez

    Thanks for the comment!
  3. Dr. Okun

    Alternatives To Sinemet

    Sinemet is the best and another alternative may be a Duopa pump where you can control the levels. Rytary is another dopamine formulation and some people also use mucuna.
  4. Dr. Okun

    sq pump

    We have not heard an update for approval but if we hear anything we will post.
  5. Dr. Okun

    First treatment?

    Happy to help.
  6. Dr. Okun

    Gpi and levodopa

    Generally the best is to have the whole situation evaluated starting with lead locations, programming and then medications and therapy. Also the disease progression issues...walking, talking and thinking are not addressed by DBS and will need other strategies. I am really sorry you are struggling....
  7. Here are some answers: 1. I know everyone is different, but how long does the honeymoon period last - 5 years, 10 years? It is different in many patients but can last from months to many years.... 2. Is progression considered to be when symptoms move to the other side of the body. I ask that because my left index finger has a tremor already and all of my other symptoms are on the right side of my body. -- This is one potential indication of depression but progression can be many different symptoms but is often very slow... 3. the Rytary has definitely decreased, by a 1/3 to 1/2, the amount of daily medicine I take for arthritis, spinal disc and joint pains and stiffness. Does that mean those issues that I thought were related to spine and joint problems, were really PD? --Yes, the pain may be PD related, but often there is arthritis in PD patients and you may need both treatments.
  8. Dr. Okun

    First treatment?

    Some people cannot tolerate the Sifrol because of headache and sleep issues and you may want to talk to your doc about not using this strategy.
  9. Dr. Okun

    deep brain stimulator battery replacement

    As long as you realize that when you change the battery you have to rest to the lower levels as it could lead to severe pulling or side effects (after the battery change).
  10. Dr. Okun

    deep brain stimulator battery replacement

    It is not common to increase voltage as the battery runs out.....it is possible but you have to be careful after replacement to set the parameters back to the lower level. Rather than do this we like to replace the battery before symptoms recur. Hope that helps.
  11. Dr. Okun

    Wrong connections - is it possible?

    It is possible to reverse the channels when plugging on the device. As long as you and your doc figure it out the safest thing is to just be aware of it....and they can be switched at the next battery change.
  12. Here are some of things you may consider. 1- a motorized chair does not mean you need to be in the chair at all times 2- make the decision to prevent falling and to enhance quality of life 3- are you socially isolated or at risk of depression and losing important aspects of your life. I discuss these things with my patients and make a decision together.
  13. Dr. Okun

    deep brain stimulator battery replacement

    This is a really important question. I will paste a paper we wrote about this and you can share the data with insurance companies. It is best to have a plan and monitor closely DBS batteries. If settings are high they may run out faster than expected. In some cases we preventatively replace the battery a month or two early and maybe even before ERI light....to prevent symptoms....hope that helps. PLoS One. 2013;8(3):e58665. doi: 10.1371/journal.pone.0058665. Epub 2013 Mar 11. Management of deep brain stimulator battery failure: battery estimators, charge density, and importance of clinical symptoms. Fakhar K1, Hastings E, Butson CR, Foote KD, Zeilman P, Okun MS. Author information Abstract OBJECTIVE: We aimed in this investigation to study deep brain stimulation (DBS) battery drain with special attention directed toward patient symptoms prior to and following battery replacement. BACKGROUND: Previously our group developed web-based calculators and smart phone applications to estimate DBS battery life (http://mdc.mbi.ufl.edu/surgery/dbs-battery-estimator). METHODS: A cohort of 320 patients undergoing DBS battery replacement from 2002-2012 were included in an IRB approved study. Statistical analysis was performed using SPSS 20.0 (IBM, Armonk, NY). RESULTS: The mean charge density for treatment of Parkinson's disease was 7.2 µC/cm(2)/phase (SD = 3.82), for dystonia was 17.5 µC/cm(2)/phase (SD = 8.53), for essential tremor was 8.3 µC/cm(2)/phase (SD = 4.85), and for OCD was 18.0 µC/cm(2)/phase (SD = 4.35). There was a significant relationship between charge density and battery life (r = -.59, p<.001), as well as total power and battery life (r = -.64, p<.001). The UF estimator (r = .67, p<.001) and the Medtronic helpline (r = .74, p<.001) predictions of battery life were significantly positively associated with actual battery life. Battery status indicators on Soletra and Kinetra were poor predictors of battery life. In 38 cases, the symptoms improved following a battery change, suggesting that the neurostimulator was likely responsible for symptom worsening. For these cases, both the UF estimator and the Medtronic helpline were significantly correlated with battery life (r = .65 and r = .70, respectively, both p<.001). CONCLUSIONS: Battery estimations, charge density, total power and clinical symptoms were important factors. The observation of clinical worsening that was rescued following neurostimulator replacement reinforces the notion that changes in clinical symptoms can be associated with battery drain. PMID: 23536810 PMCID: PMC3594176 DOI: 10.1371/journal.pone.0058665 [Indexed for MEDLINE] Free PMC Article
  14. Dr. Okun

    Vitamin B3

    There are a lot of advertisements for Vitamin replacement and Parkinson as well as other degenerative diseases. I have checked and there is no major study on B3 or NAD replacement that has the data to suggest this as a wide scale approach in Parkinson. However, we do recommend one multivitamin a day and these usually have B3.
  15. Dr. Okun

    Neg DatScan and DRD

    You should be able to get the DAT scan disk from the imaging center and bring to another neurologist for interpretation.
  16. Dr. Okun

    Acid indigestion

    In these complex cases we work with the GI doc who will often do a quick scope, workup and in many cases safely add an acid blocker (Nexium or nexium like drug). In cases where dopamine replacement is causing some of the symptoms we add carbidopa to the levodopa or rytary and also consider adding domperidone. In cases where the cause cannot be pinned down we sometimes use domperidone and occasionally use Zofran but never drugs like metoclopramide that block dopamine.
  17. Dr. Okun

    Insulin growth factors

    One thing I always remind people is the difference between associated risk factors and actual disease. Once you have Parkinson or Alzheimer's the cat is out if the bag and it is not clear these sorts of interventions will be helpful. In other words many of these studies are focusing on risk and what may impact development of Parkinson. Having said that, there is a lot of interest in the endocrine system and insulin system and neurodegenerative diseases....there may be opportunities and clues here that researchers can use to address risk and address treatment!
  18. Yes, adding dopaminergics and agonists can result in extra movement (dyskinesia)--however this doesn't mean taking more medicine as your doctor suggests is wrong (it is probably a good idea to think of dopamine or an agonist). I tend to use more levodopa than agonist after DBS but it is not wrong to use agonist. Also, the laughter issue can occur usually as a result of the location of the DBS lead. Be careful with continuing to increase voltage as that can result in side effects....
  19. Awake jerking (myoclonus) is usually not a core symptom of Parkinson, but can appear after long durations of disease (perhaps from Lewy Body protein deposition).
  20. Dr. Okun

    Me and deep brain stimulation

    Can you define lesion? Is this a brain lesion like a tumor, or a previous ablative brain lesion (pallidotomy. etc.)?
  21. Dr. Okun

    Can DBS cause severe muscle pain?

    Speech is the most common side effect of DBS and also getting words out of the mouth. Pain and shaking is uncommon, but if the device is turned off you can usually determine if the DBS is causative. Sometimes when the device is on, it can precipitate "on" dystonia with pain. I think after several months of trying programming and medication changes if issues persist we do a workup including imaging and checking thresholds for benefits and side effects at each contact on the DBS lead(s).....ask your doc about these.... Not sure on shaking night episodes but re-emergence of symptoms and redosing SInemet or Madopar at night are reasonable strategies.
  22. Dr. Okun

    Thoughts on my neurologist's diagnosis

    I think the levodopa trial is important to clarify diagnosis as you describe it, but remember it could take 12 weeks or more and the dose may need to be increased to 2 or more tablets per dose to be sure. After the trial you and your doc would select the best/optimal dose and also discuss whether symptoms are affecting quality of life or if your examination suggests harm from not treating (falls, etc.). Hope that helps. I would work with your doc on the trial and get re-examined at various dose levels before concluding whether the medicine is helpful and I prefer to treat for many weeks....also if you decide to stop we never sop abruptly as there could be a withdrawal syndrome.
  23. Dr. Okun

    A Flutter or A Fib

    Most people do not require more than 300mg of dopamine per dose (Sinemet) but best to titrate with your doc. Treating constipation can be important and improve quality of life. Anytime walking worsens breathing we always get an internist involved to look at the heart and lungs. Finally in some of these cases simply moving doses closer together at 2 or 3 hour intervals may improve shortness of breath or anxiety feelings. Good luck.
  24. Dr. Okun

    High doses of Thiamine HCL

    I checked out the website. I think the discussions about it stopping cell death of dopamine cells and delaying disease progression are premature. There are indeed a lot of patients trying this approach and I found one open label study below which has serious methodological concerns. We will keep an eye out for more studies and hopefully controlled studies and as more information becomes available we would be happy to share it. Format: Abstract Send to J Altern Complement Med. 2015 Dec;21(12):740-7. doi: 10.1089/acm.2014.0353. Epub 2015 Oct 27. Long-Term Treatment with High-Dose Thiamine in Parkinson Disease: An Open-Label Pilot Study. Costantini A1, Pala MI1, Grossi E2, Mondonico S3, Cardelli LE4, Jenner C1, Proietti S1, Colangeli M5, Fancellu R6. Author information Abstract OBJECTIVES: To investigate the potential clinical, restorative, and neuroprotective effects of long-term treatment with thiamine in Parkinson disease (PD). DESIGN: Observational open-label pilot study. SETTING: Outpatient neurologic rehabilitation clinic. PATIENTS AND METHODS: Starting in June 2012, we have recruited 50 patients with PD (33 men and 17 women; mean age, 70.4 ± 12.9 years; mean disease duration, 7.3 ± 6.7 years). All the patients were assessed at baseline with the Unified Parkinson's Disease Rating Scale (UPDRS) and the Fatigue Severity Scale (FSS) and began treatment with 100 mg of thiamine administered intramuscularly twice a week, without any change to personal therapy. All the patients were re-evaluated after 1 month and then every 3 months during treatment. RESULTS: Thiamine treatment led to significant improvement of motor and nonmotor symptoms: mean UPDRS scores (parts I-IV) improved from 38.55 ± 15.24 to 18.16 ± 15.08 (p = 2.4 × 10(-14), t test for paired data) within 3 months and remained stable over time; motor UPDRS part III score improved from 22.01 ± 8.57 to 9.92 ± 8.66 (p = 3.1 × 10(-22)). Some patients with a milder phenotype had complete clinical recovery. FSS scores, in six patients who had fatigue, improved from 53.00 ± 8.17 to 23.60 ± 7.77 (p < 0.0001, t test for paired data). Follow-up duration ranged from 95 to 831 days (mean, 291.6 ± 207.2 days). CONCLUSIONS: Administration of parenteral high-dose thiamine was effective in reversing PD motor and nonmotor symptoms. The clinical improvement was stable over time in all the patients. From our clinical evidence, we hypothesize that a dysfunction of thiamine-dependent metabolic processes could cause selective neural damage in the centers typically affected by this disease and might be a fundamental molecular event provoking neurodegeneration. Thiamine could have both restorative and neuroprotective action in PD. PMID: 26505466 DOI: 10.1089/acm.2014.0353 [Indexed for MEDLINE]