Antidepressant Neuropathy and the Color of Life

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October 10, 2022 | 15 Comments

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  1. As one symptom I struggled with was I couldn’t dream/imagine anything at all in the first few weeks post SSRI, aphantasia does not seem to be dependent on the sensory inputs. It’s now turned from just blank blackness into dimmed visions.

    I wonder if the brain on its own can’t sense like before, it would reduce regeneration of sensors in the skin because it wouldn’t be needed like before…

    “This points both to the capacity of systems to regenerate” — this might be due to neuroplasticity of the brain not regeneration of small fibers in skin

    When I search for small fiber neuropathy symptoms, the most frequent one seems to be pain related, but somehow even though all my cognitive/memory symptoms, emotional numbness, skin numbness even in scalp…. is severe I haven’t had pain issue, Why is that?
    Do all other small fiber neuropathy diseases cause pain?

    • Lack of dreaming is highly likely to be peripheral – a form of numbing. Nightmares are a common feature of withdrawal – see the sleepless posts – this is likely to stem from bodily irritability

      D

  2. The blog is ok but two remarks:

    1) Why is it so hard to not explain/list typical LONG KNOWN symptoms of autonomic neuropathy INCLUDING SEXUAL DYSFUNCTION (ed, lack of arousal, lack of lubrication etc). You talk of the “sensory” which is ok term.physiologically, BUT THE AVERAGE MEMBER OF THE SUFFERER COMMUNITY DOES NOT UNDERSTAND THE CONNECTION AND THINKS OF GENITAL SENSING ONLY. People are posting all the time about constipation, other gut motility related issues, lack of appetite, bladder issues, sweating changes, pulse changes etc. THEY ARE SCHOOLBOOK SYMPTOMS OF AUTONOMIC NEUROPATHY, BUT PEOPLE JUST CANT MAKE THE CONNECTION.

    2) l think it is not smart to exclude /separate the brain side here, similar neurologic injur may take place parallel in certain brain tissues too.

    Please consider these points in your communication. Validating more and more tested neuropathies would be the FIRST REAL MILESTONE EVER in the search for what these syndromes are related to. Research of the causes could then focus on the real issues. Public awareness could include this knowledge. Even law suits might become possible after enough validation. Now everything is dispersed and has no focus.

  3. One of our Finnish contacts sent this comment

    So it looks like you can get the same problems (“PSSD”, SFN, Akathisia and Tardive Dyskinesia) from both SSRIs and Covid Vaccines.

    We are gathering data from the withdrawal group at the moment. Could we / RxISK take contact to Dr. Anne Louise Oaklander?

    Dr. Anne Louise Oaklander from the Massachusettes General Hospital / Harvard happens to be the leading expert in this area. Somehow dysimmunity seems to be the case for most people with SFN as 80% of all cases responded to immunotherapy. She treats rapidly progressive “idiopathic” SFN cases with corticosteroids or IVIg with highly encouraging results. Giving severely sick people SSRI/SNRIs or epilepsy pills for just maskin pain doesn’t make sense.

    Interestingly, the National Institutions of Health made a study where they treated Covid vaccine induced SFN patients with corticosteroids. The patients showed significant improvement in all neurologic symptoms after two weeks. Patients who showed persistent symptoms of dysautonomia and SFN for five to nine months were managed on intravenous immunoglobulin (IVIg) treatment. IVIg treatment was significant as symptoms improved in two weeks, resolving entirely for some and remaining as mildly residual in the others.
    https://www.news-medical.net/news/20220519/NIH-team-documents-various-types-of-neuropathy-after-COVID-vaccination.aspx

    Same results also here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9128783/

    Interestingly from 1988 we have a case report of complete recovery of tardive dyskinesia cases with corticosteroids: https://pubmed.ncbi.nlm.nih.gov/2898365/

    Anne Louise Oaklander demonstrated success with IVIG / Corticosteroids after Covid induced SFN: https://www.reuters.com/business/healthcare-pharmaceuticals/nerve-damage-may-explain-some-cases-long-covid-us-study-2022-03-01/

    We also have documented Akathisia cases after covid vaccine: https://pubmed.ncbi.nlm.nih.gov/34113842/

    Tardive dyskinesia after Pfizer vaccine:
    https://www.ehealthme.com/vs/pfizer-biontech-covid-vaccine/tardive-dyskinesia/

    • This all looks good but before getting carried away, RxISK has been in contact with Dr Oaklander starting 5 years ago to draw her attention to PSSD. She is a recognized expert on SFN and is especially interested in it in children. This is a relatively new state – perhaps it is linked to the greatly increased consumption of drugs in pregnancy in recent decades.

      She is aware of PSSD but has shown no interest in it so far. We have tried high dose steroids in some people with PSSd with little or no benefits.

      My hunch is that SFN linked to antidepressants or antipsychotics is not an auto-immune condition.

      Our correspondent sent us some slides from Dr Oaklanders work – this are loaded up and appear as a link at the bottom of the post

      DH

  4. Sorry I don’t get what is the conclusion: is it worth to make a thigh biopsy or not in case no SFN detected from ankle?

  5. I began drinking a small 50ml measure of tart cherry juice which I diluted with water from 14th August. I was drinking this juice about a hour before I went to bed as it has been shown to raise levels of melatonin which helps with insomnia.

    I was wondering if anyone with PSSD had tried drinking tart cherry juice for an extended period of time.

    The paper below demonstrates drinking a daily measure of about 200ml of tart cherry juice produced measurable improvements in people with non diabetic peripheral neuropathies.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566454/

    Wouldn’t it be worth conducting a study similar to the one above on people with PSSD ?

  6. I would be very interested to know how these SFN cases are distributed across the two distinct types of PSSD: those who get symptoms of PSSD after a few doses of SSRI and don’t get better after cessation vs those who get PSSD only after stopping the drug.

    I hope that when the cases of SFN are logged the subtype of PSSD is also recorded.

    • Let me draw your attention to a recent study that may be relevant to your comment : Novel Autoantibodies in Idiopathic Small Fiber Neuropathy (https://doi.org/10.1002/ana.26268). The study established that patients with SFN have different characteristics depending on whether the cause of their SFN is known or not.

      Sera from 58 SFN patients and 20 age- and gender-matched healthy controls (HCs) were screened against >1,600 immune-related antigens, using protein microarray. Patients with an unknown cause (idiopathic) of SFN had a different autoantibody profile than patients with an identified cause. According to the study, “Further subgroup analysis in the main cohort (iSFN and SFN by secondary causes (secondary SFN)) showed that MX1 was higher in iSFN compared to secondary SFN (HR = 1.61 vs 0.106, p = 0.009).”. I explained in a previous comment why I think an “autoantibody profile” study in patients with PSSD would be of great interest. It is likely that patients with PSSD having SFN have a distinct autoantibody profile from other patients with SFN without PSSD. Knowing the distinctive signature of autoantibodies in patients with PSSD may guide us to interesting leads, as specific autoantibodies may be characteristic of specific damage. As you suggest, different subgroups of patients with PSSD and SFN may also have distinct characteristics.

      • It has also occurred to me that any differences in biomarkers in PSSD-related SFN and other forms of SFN are noted, not just to assist research on a pathogenesis and a cure. It is important to distinguish ‘types’ of SFN to get recognition of PSSD; SSRIs are taken by millions of people and therefore it is to be expected that some of them will get idiopathic SFN.

  7. This is just to alert people in England (I’m not sure if it applies to Ireland Scotland and Wales) that access to records is in a mess As historically some medics are still opposed and will be obstructive no doubt It matters as those who want a copy of their records will be given the runaround If considering giving a copy eg to Rxisk it would be an idea to get hold of them asap

    This site is intended for health professionals only
    (I consider we are all health ‘professionals’ and all info should be available to all)

    Home News Technology GPs will have to re-redact records when patients move practice
    GPs will have to re-redact records when patients move practice

    Costanza Potter
    17 October 2022

    GP practices registering new patients will have to repeat the work already done by the previous practice of redacting their record, official guidance has said.

    From next month, patients will automatically be able to read new entries – including free text, letters and documents – in their GP health record through the NHS App.

    But official guidance has revealed that patients moving practice will lose access to any data from their previous surgery, meaning that if they request this again their new practice will have to repeat the process of redacting their records.

    It comes as the BMA has called for the change to be delayed again and said it is having ‘urgent discussions’ around the new requirements, with guidance set to be issued within the coming days.

    What does official guidance say?
    NHS England FAQs set out that when patients register with a new practice, only new records from the date of registration will be visible, with any records previously accessed since 1 November lost.

    The guidance, hosted on NHS England’s closed FutureNHS portal and seen by Pulse, said: ‘When a patient registers at a new GP practice from 1 November 2022, they will lose any access they had to historical information but will automatically get access to their future record in full from the date they join that practice.

    ‘If a patient would like to access their historical information (detailed coded record or full), they will have to request this and the new practice will need to review and redact if necessary.’

    A local update from South West London integrated care board (ICB) to practices last week, also seen by Pulse, said that practices should alert the new practice to any entries they previously restricted since ‘online visibility settings’ are not part of a GP2GP transfer.

    It said: ‘If a patient has some entries restricted online and leaves the practice, we recommend you have local procedures in place to contact the patient’s new practice regarding the matter.

    ‘Adding a patient warning would alert you to any restricted entries when, for example, you load the patient record.’

    Meanwhile, the SWL ICB update also revealed that all EMIS GP practices will need to make changes to their clinical system to enable record access in order to avoid breaching their contract.

    Practices that do not ‘enable their global system settings’ will be ‘unable to meet their current GMS contractual obligation to provide full record access upon written request and patients will not receive access to their prospective records in November 2022’, it said.

    It remains unclear whether the requirement applies to practices using systems other than EMIS.

    London GP partner and GP Survival chair Dr Nick Grundy warned that NHS Digital has not yet ‘put in place any of the tech required to make [prospective notes access] work’.

    He added that it is ‘pure comms crap’ to say people have full access to their notes when they will ‘lose it all again’ as soon as they move practice.

    He said: ‘The whole programme is yet another PR exercise by NHS England and one which characteristically seeks to solve a problem which doesn’t exist.’

    ‘Characteristically, again, NHSE piles a load of pointless bureaucracy on practices, without any functioning IT to support, so they can witter on about the “transformative” programmes they’re embarked on.

    ‘This is not transformative. It is a waste of everyone’s time.’

    Speaking at the Best Practice conference in Birmingham this week, GPC England deputy chair and IT policy lead Dr David Wrigley said the BMA is ‘having urgent discussions’ and ‘will be issuing clear guidance early next week’.

    Dr Wrigley told Pulse: ‘The BMA is concerned that the proposed model to centrally switch on default access to all GP patient records from 1 November will put patient data and safety at risk, as it is not consent driven.

    ‘There are also many concerns over the increased workload involved in this rollout and to expect GPs to review 61 million records is wholly unrealistic.’

    He added: ‘We urge NHS England and Government ministers to reconsider the current go-live date and revisit the default access to records model for every patient in England.

    ‘We are, of course, keen to discuss possible solutions to design safe records access that works for everyone. As a consequence, we cannot support the project as it currently stands.’

    The BMA previously said it had ‘not received satisfactory assurance that the citizen access to records programme scheduled to roll out on 1 November can go ahead’.

    It said that the ‘necessary planning and resourcing required to launch the programme at this time cannot be put in place to enable a safe and successful rollout’.

    At the same time, an NHS England blog this week committed to the rollout in ‘just under three weeks’ time’.

    An NHS England spokesperson told Pulse: ‘Offering people access to their medical records is not only beneficial for patients in helping them manage their health, but it also helps practices manage demand better with people able to access information including their test results on their smartphones, where they feel comfortable to do so, instead of having to contact their practice.’

    NHS England stressed that there has been extensive and ongoing engagement on records access and that it notified GP practices in July of the change coming on 1 November with all the detail they would need to prepare and comply by this date.

    It added that it has worked closely with GP IT system suppliers to develop the required technical capability and that practices should contact their commissioner where they see challenges with providing the necessary safeguards.

    As well as prospective records access, Pulse revealed earlier this week that NHS England plans to enable patients to request their historic GP records through the NHS App from next year.

  8. There is a interesting paper from the 1970s from Richard a kunin where he succefully treated alot of his TD patients with manganese and niacin.
    Phenodiazines apparently chelate manganese but idk about antidepressants and newer neuroleptics.
    Also interesting that this hasnt penetrated to the mainstream sciences, maybe because he was a Orthomolecular doc and treated his schizos with nasty niacin with the horrible flush side effect. How dare he!!…

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