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Hi, my name is Aember and I have had severe negative reactions to SSRIs after very fee doses. I have been sick since January 2020 with a mystery degenerative neurological condition that is affecting my ability to think and feel. I am experiencing progressive dementia and confusion. Here is my story: Have had mystery neurological illness since Jan 2020, started with delirium, a flu and then a gastrointestinal flu that woke me up with a pounding heart and nocturnal defecation for months and body temp above 99 -101F. Sleep became interrupted with very vivid dreams and bizarre hypnagogic states. Started hypersalivating. Vision became altered, blurry at distance, slightly photosensitive. Extreme fatigue and bed in early evening, sleeping in and off until noon. Increased red pinpoint angiomas developing all over my body. Gradually became anhedonic in March 2020, unable to laugh or cry. Confusion and anxiety increased. Was put on Seroquel 25 mg end of March 2020, immediately had some involuntary movement so stopped after 1 dose. Switched to Trazodone 2 days later and had an extreme Akathesia episode with involuntary movement, was up for 24 hours pacing and raging internally. The next week was put on Citalopram 10mg for 2 days, immediately got dyskinesia (pill rolling, teeth grinding, twitching, teeth licking, bunny nose) with compulsive behaviour, vision became blurrier and developed horizontal double vision halos, perception of time sped up, switched to 5mg Escitalopram for 1 day, started muscle twitching, became flushed, feverish could not sleep (serotonin syndome?), next day became psychotic and babbling, compulsive, bit myself, could not walk. Hospitalized April 2020, put on respiridone 0.125 upped to 0.25 for 2 weeks. Felt weird hot icy burning in chest and esophagus upon initiating, had issues swallowing, voice got raspier, experienced increased hunger, constant fatigue and sedation, dry skin some teeth grinding and muscle tension on and off, vision worsened further (my left eye is now -1 and blurry, was perfect in December 2019), increased constipation, little change in anxiety, increased social compulsiveness (speaking without thinking). Started lactating. Quit April 29 after tapering to 0.125 mg for 3 days. Since then, I had episodes of dyskinesia and teeth grinding, bunny nosing, cramping in hands and feet, but it's gradually lessening as my body adapts to being antipsychotic free. I am still in a confused state (feel like I am about to pass out, cannot focus) with abnormal sleep emotions (cannot feel happy, cannot work) and decreased intellect (issues with spelling, time perception, planning, focus and my degenerative neurological condition persists as well as the hypersalivation and weakness. I am in bed all day.
Hello, I am new to this site. I have come here to hear of success stories and\or advice regarding recovery from Antipsychotics and SSRI's. At the beginning of July I took Risperidone 0.5mg and Prozac 20mg for 10 days and ceased it's use due to side effects such as Tachycardia, Emotional Blunting, Anxiety, blankouts and lowered cognition. The withdrawal was not extreme, if I remember correctly, I had a period of severe depression which resolved itself over a few days. Followed by a slightly manic phase which stabilized itself. For the next 2 weeks after the initial withdrawal I had periods of anger and agitation. But now, at present times. There appears to be no withdrawal symptoms. But lasting damage and effects. I now have hyperprolactinemia with no sign of a prolactinoma gathered from my MRI results. This is causing gynecomastia and other effects such aa fatigue and a lowered sex drive. This was not present prior to the drug combination. Ever since taking those two drugs, I now have these effects. I have read that Risperidone can cause hyperprolactinemia for 54 weeks which is 1 year and a month 1\2. Do you I truly have to wait that long to recover? Can I actually recover at all? My GP sent a referral to an Endocrinologist and I am awaiting an appointment. Through the endo I can be treated with Cabergoline and Clomid to lower the Prolactin but I have my doubts that it will work.
India posted a topic in In the mediahttps://metro.co.uk/2018/01/24/woman-shares-coming-off-antidepressant-ruined-life-7255570/ See link for images that accompany article By Ellen Scott, Lifestyle editor Wednesday 24 Jan 2018 10:36 am When Tabitha Dow was six, she had her first migraine. Now and again she’d be stuck with headaches, but when she hit 29 they became more regular and more severe. Soon her migraines were debilitating, so she sought out medical support at the National Migraine Centre in London. There, Tabitha was advised to ask her doctor for the antidepressant Venlafaxine at a maximum dose of 150mg. She was told that this would help not only with her migraines, but also with her persistent low moods. ‘This was the start of my downfall,’ Tabitha tells Metro.co.uk. ‘Neither the neurologist, nor the GP who subsequently prescribed the drug, explained that it was extremely chemically addictive. ‘I was not told how long to take it for, it was prescribed indefinitely, and there was no mention that coming off the drug would likely result in severe withdrawal symptoms and a need to taper off like you would heroin. ‘Neither mentioned that one of the common withdrawal effects of Venlafaxine are migraines.’ Venlafaxine didn’t work to help Tabitha’s mood, so after a year, she decided she wanted to come off it. Asking her GP about a plan to taper off the antidepressant, Tabitha was told that the medical professional had ‘no idea’ how to proceed. ‘I was completely by myself,’ says Tabitha. She followed the instructions recommended by her GP, but was quickly confront with severe and debilitating withdrawal symptoms. The plan the doctor recommended was fast and drastic, and Tabitha feels she was left completely unprepared for what she was about to face. Tabitha before withdrawal. Picture: Tabitha Dow) ‘The migraines increased dramatically and on top of these I developed intense crushing pressure in my forehead which was constant and unbearable for months,’ Tabitha remembers. ‘I also experienced chronic fatigue, internal tremors, startling easily, sensitivity to light and sound, sensory overload, anger, brain zaps, pressure behind my eyes, tired eyes, extreme fear, panic, confusion, being unable to speak, being unable to move, my brain feeling sick, my heart beating fast when I stood up, mental turmoil, night terrors, hypnagogic hallucinations, night sweats, gasping in my sleep, feeling unwell after a bath/shower, severe difficulty waking up in the morning, feeling drowsy and stuck until several hours after waking, feeling drugged and toxic after napping and sleeping, a sensation of my brain moving from side-to-side, squeezing/tight sensation inside my head, right eye-brow pulling upwards, a chemical “metally” sensation in my forehead, vibrating and electrical sensation in my head, being unable to cope with everyday tasks, deterioration in mood, agitation, feeling like my brain was shutting down, light-headed when I stood up, feeling like my body was rocking as if on a boat, feeling catatonic, scrambled thinking, feeling as if there was a block in my thinking, difficulty planning, difficulty carrying out sequential tasks, and feeling detached from my environment.’ Having found out that she has a lesion in the frontal lobe in her brain, Tabitha believes she may have even had a seizure during this time. ‘I’ve had two episodes where I couldn’t speak,’ she says. ‘It felt like an electrical storm in my head, which I’ve read is what a seizure feels like.’ Tabitha during withdrawal. (Picture: Tabitha Dow) At first Tabitha didn’t realise that her symptoms were the direct result of withdrawal from Venlafaxine. When she asked her doctor for help and her test results came back normal, she was offered no further support. ‘I was left to cope alone,’ she says. NICE's current guidelines on Venlafaxine, and what Tabitha wants to change: ‘Associated with a higher risk of withdrawal effects compared with other antidepressants. ‘Gastro-intestinal disturbances, headache, anxiety, dizziness, paraesthesia, tremor, sleep disturbances, and sweating are most common features of withdrawal if treatment stopped abruptly or if dose reduced markedly; dose should be reduced over several weeks.’ Tabitha suggests that the recommendation to reduce the dose over several weeks isn’t accurate. It takes months to come off the antidepressant safely, and two years later she’s still experiencing debilitating symptoms. She notes that NICE’s guidelines also fail to mention that Venlafaxine can cause withdrawal symptoms even when not stopped abruptly, and tapered off in accordance with GP’s tapering guidelines. Unable to work, Tabitha had to quit her job and leave her flat in West London to move home with her parents, so they could look after her. She lost everything – her job, her health, her home, and yet, she says, doctors still refuse to listen to her struggles. The doctors Tabitha has seen don’t believe that withdrawal can cause the severe symptoms Tabitha listed. The only psychiatrist she could find to back up her claims is Dr Healy, who’s dedicated his time to researching the effects of Venlafaxine’s withdrawal symptoms. Dr Healy wrote a letter to Tabitha’s GP confirming that she was experiencing intense withdrawal symptoms, but Tabitha says she’s still not receiving any help. It was only when Tabitha found a Facebook group dedicated to Venlafaxine withdrawal that she learned she wasn’t alone in experiencing her symptoms. Scrolling through the group, Tabitha found comment after comment repeating her experience, listing a ‘crushing pressure in their foreheads every single day’, that feels like your head is ‘in a vice’ or you’re being ‘smashed in the head with a brick’. ‘It’s ruined my life’ (Picture: Tabitha Dow) ‘It wasn’t until I joined this group and saw that there were hundreds of people in the group all experiencing the same symptoms as me,’ Tabitha tells us, ‘and that I realised that my symptoms were caused by Venlafaxine withdrawal. ‘I told two GPs that I was experiencing withdrawal symptoms from Venlafaxine. One didn’t comment but agreed to refer me to see Dr Healy, the other disagreed even once I had written evidence from Dr Healy.’ Doctors Tabitha has seen believe that the symptoms she’s experiencing are not the result of coming off Venlafaxine, but are simply her original condition returning. We spoke to a psychiatrist with experience in Venlafaxine, Dr Cosmo Hallstrom, who told us that it’s one of the most popular antidepressants out there, and is generally regarded as the most effective. While legally, GPs are required to give patients all the information regarding drugs they prescribe, Dr Hallstrom says that the reality is quite different. ‘A doctor’s interest is to get patients treated, and to persuade them to take medication that will help,’ Dr Hallstrom tells Metro.co.uk. ‘So maybe they don’t start listing off all the possible side effects.’ He notes that a GP’s perception of risk is different to that of a patient, and doctors may be reluctant to note all the possible risks in case it puts a patient off getting help. Two years later, Tabitha is still experiencing withdrawal symptoms. (Picture: Tabitha Dow) SSRIs do have withdrawal symptoms, Dr Hallstrom explains, but these tend to be short-lived. He states that data shows that in the majority of patients who believe they’re having withdrawal symptoms, what they’re actually experiencing is the return of their initial condition. He does admit, however, that there’s a chance some people may experience genuine withdrawal – but recommends a simple ‘test, retest’ as a way to check it out. ‘I understand that a lot of patients might not want to take the medication again, having been through a bad experience,’ Dr Hallstrom says. ‘They say “that stuff’s poison”. ‘But if it is withdrawal, when they start taking the drug again their symptoms should disappear within 24 or 48 hours. That’s a simple test.’ But having been ‘traumatised’ by her experience, Tabitha is reluctant to go near medication again – especially as Venlafaxine didn’t work to remedy her depression in the first place, and she doesn’t want to be tied to taking medication for the rest of her life. Two years on, she’s still debilitated by withdrawal symptoms. She’s unable to work, relies on PIP and ESA benefits, and is now trying to raise money to fund alternative therapies to help her cope – not only with her side effects, but with her thyroid cancer, which she was diagnosed with in the last few years. It’s the withdrawal symptoms that concern her most. MORE: HEALTH These are the 20 most painful illnesses, according to the NHS Women take to Twitter to vent over how they are treated by doctors Mums over 35 should wait at least a year between pregnancies, says study Women are more likely to be addicted to cannabis than men, suggests study ‘I’d rather have thyroid cancer than go through coming off Venlafaxine,’ Tabitha tells her. ‘Thyroid cancer doesn’t cause any symptoms. Withdrawal ruins my life every thirty seconds. ‘I have really bad cognitive symptoms. It was like my brain had been drugged. ‘I feel like my intelligence has gone, along with my memory.’ Naturally, the experience has put Tabitha off taking medication. She now relies on alternative therapies, but as this is a huge financial burden, she’s taken to GoFundMe to ask for help. Now, by sharing her story, Tabitha hopes she can affect change. ‘It’s too late for me,’ she tells us. ‘Taking Venlafaxine has ruined my life; I’ve lost my income, my social life and my independence. ‘But I would like doctors to believe me. I’d like them to listen. ‘I want there to be better information about coming off antidepressants and I want there to be a change to the NICE guidelines, so no one has to go through this again.’ Read more: https://metro.co.uk/2018/01/24/woman-shares-coming-off-antidepressant-ruined-life-7255570/?ito=cbshare Twitter: https://twitter.com/MetroUK | Facebook: https://www.facebook.com/MetroUK/