hey guys, the more I read about stories in here the less I’m thinking I have FND as it doesn’t appear to match with my symptoms.
to those who don’t remember my previous post: I get these crazy head shaking, tic like movements usually when I lay down in bed at night. Neurologist who has worked all over the world said it was FND. I have tried numerous medications (Primidone, Propranolol, Fluoxetine, Sertraline), hypnotherapy, Botox.. you name it I’ve tried it. I have just started a new job in a bank and was dreading it as I was thinking “what if my head starts shaking and I’m surrounded by people” luckily it didn’t happen and I showed some resilience which I was pleased about, but it was extremely difficult, I was sweating, and constantly in a state of fear.. however, recently that’s changed.
I’ve been something called Alprazolam better known as Xanax.. now this is purely my own opinion and I’m sure everyone’s experience is/will be different..
I am noticing that I am way more confident (especially in public), in the office, in any situation.. now those good feelings definitely come with their downside (slightly drowsy, forgetting things/not remembering as much) but boy is my every day life so much easier/happier to live
just thought I’d share because even if it helps one person then it was worth it.. it’s extremely popular in America and some people take like 1mg 3x a day. I am literally taking 0.25 every 2 days and I’m noticing a difference so it may just do the same for you. The website I bought it from is called “Alprazolam UK” and 30 tabs (120 days worth) is £33! Maybe worth a try if you’re really struggling
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LKE9
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I have chronic dizziness likely caused by vestibular migraines and I take a similar ( benzodiazepine) called Clonazepam. Mine is prescribed and I use it sparingly. They are used for anxiety, panic attacks and for seizures and are very effective as a calming influence on the central nervous system.
Just a word of warning, they can be highly addictive and withdrawal can be very tough for some people, its why doctors can be very reluctant to prescribe them. Please dont exceed the minimum dose you need to function.
I take clonazepam too and I know they are addictive but they help me. I’ve taken them since 2018 for my head and face tremors but my GP has tried to get me off them a few times even though prescribed by the Walton centre. I hope everyone gets some form of help as this condition gets us all ways!
Yes its a tough one. I've tried half a dozen meds for migraines with no success, either the side effects are awful, they dont work or quite often its both. I'm going private to see a balance and migraine specialist but cant see him until December.
I'm currently not taking anything for the migraines, but I do take Clonazepam, low dose. I'm sparing with it and I know many doctors disapprove, but frankly I have to live and function. I challenge anyone with chronic dizziness and balance issues to try and function day to day. I challenge anyone to try it and see how disabling it is. So for the time being I'll use it and be damned frankly.
I was just concerned for the OP, as he has bought his and I just wanted to make sure he was aware of their potentially addictive nature. Its not ideal but as you say those of us with these weird symptoms have to do what we can to get through.
I loved your response and I totally understand you I certainly would not buy anything over the internet either in case it was not safe. Good luck for December 👍
Thank you, I'm hoping the consultant can help. I was referred back to see the NHS consultant again at the migraine clinic, but its not until March. So I've decided to see someone privately. I need something to help control the symptoms. I've been battling this for 2.5 years 😔
I know it can be exhausting my consultant discharged me in 2021. I have been back my GP as I’m still suffering migraines and other symptoms too but they won’t see me at Walton as they said it is migraines nothing else. FND on our notes seems to but a do not believe on our notes 😢. So I truly hope with you going private they will actually listen to you. I wish you all the best and hope you get the help you need.
Well I hope so, he's a leading neuro otologist and specialises in balance disorders. I'm not even sure mine is migraine. I get migraines periodically but they've always been the classic migraine with aura. Never caused dizziness or balance problems. I was getting 2 or 3 a week in 2022 when this started. A migraine one day, balance and dizziness another. And been like it ever since.
My issue is I feel both the NHS neuro and ENT hurried through the consultations. They jumped on the fact I have a history of migraines and was dizzy and concluded it was VM or MAV ( migraine associated vertigo). I wasnt happy that they concluded this with not much in the way of diagnostic testing.
Its why I'm going private, the NHS doesnt have time to spend with patients discussing everything and ruling out other causes. They have too many patients and just want you to go away.
Hi, I am happy you are getting relief and as with all medicines one has to way up the benefits again risks/side effects. Its also good that you are on a low dosage.
I just found an published med article about the drug (reliable source) and it said for pregnant women to avoid and also a reference to avoid grapefruits and grapefruit juice. I will share the conclussion:
CONCLUSIONS
Alprazolam is the most widely prescribed and misused benzodiazepine in the United States.
It can be used safely and effectively when prescribed appropriately, after thoroughly evaluating the risks and benefits of treatment.
Side effects are common, but often downplayed by patients, given its rapid onset of therapeutic action and unique reinforcing properties. Common complaints reported with varying frequency by patients treated with alprazolam include sedation, fatigue, ataxia, amnesia, slurred speech, poor concentration, hypersensitivity, and irritability.
I know your dose is low, but I also included the bit on Withdrawal:
The manufacturer recommends a taper not to exceed 0.5 mg every 3 days.
As its stronger than Clonazepam, this is often used as a substitute in the withdrawal process for the drug.
I know the drug is helping you but getting it off the internet and not having it properly prescribed means your not been monitored and diet seems to play a part to.
Plus prescribers have a duty of care: "Prescribers should take measures to ensure patients taking alprazolam are not co-ingesting other CYP3A4 substrates, especially opioids."
So they need to make sure other medicines if taken are compatible.
The manufacturers taper rate recommendations are woefully inadequate, not evidence-based, & cause grave harm & suffering to many. The latest research shows that tapering schedules for psychotropic drugs should not exceed 10% of the previous dose (e.g., 50mg= reduce by 5mg=new dose 45mg) & the reductions should only be done every few weeks. (This only is a starting place, as some individuals can tolerate greater reductions, yet others cannot and must proceed with smaller dose reductions at a slower pace). Withdrawal is (should be) a highly individualized process.
These types of dose reductions require the use of a compounding pharmacy to create the incrementally smaller doses needed during the withdrawal process. Sadly, when compounding pharmacies are not available or affordable, some patients resort to creating their own "compounding pharmacies" at home: crushing tablets into powder, pulling out beads from capsules, scraping off bits of tablet with a razor blade, etc., to find ways to create tolerable dose reductions.
Additionally, doctors are not trained in safe, slow evidence-based tapering regimens, nor are they trained to recognize withdrawal symptoms/syndromes, and mistakenly diagnose the psychological & physiological manifestations of withdrawal as a new or worsening psychiatric disorder, or as "medically unexplained symptoms" (which lead to misdiagnoses like FND/"Conversion Disorder" & various other somatoform disorders).
Since manufacturers do not make their pills in doses needed to taper at a rate that reduces painful, debilitating withdrawal symptoms AND patients cannot find doctors who are willing/able to help them safely taper off psychotropic meds, many people are forced to remain on them indefinitely/permanently to avoid withdrawal as they must be able to work & function & support themselves their family. It can take months or years to taper off psych meds (especially if the person has been on high doses or on polydrug cocktails for long periods).
Unfortunately, far too many people are left disabled with prolonged or permanent damage to their brain, nervous symptoms & body from psychotropic drugs.
Dr. Mark Horowitz's textbook on deprescribing is an excellent resources for prescribers, patients, and families:
The Maudsley Deprescribing Guidelines: Antidepressants, Benzodiazepines, Gabapentinoids and Z-drugs (The Maudsley Prescribing Guidelines Series) a.co/d/9cB2AUM
With an echo of Lady4's advice, you may like to read the UK drug security's view on Xanax. I take clonozepam 0.25mg, very sparingly, since as soon as I wake up, if I took it the night before, my whole body shakes and shouts quite severely ..more so than if I don't take it, and have done some voluntary body shaking the night before..but it does help with sleep.
Someone else has just posted a warning about Zanax too.
There is a book called "anti depressed", I haven't read it, its about the culture in USA (if I recall correctly) GPs over prescribing the anti-depressants and the harm it has caused to many.
Medication should be the last resort and if prescribed monitored closely by your GP at the beginning (like it usually says on the warning leaflets) and with regular reviews.
I have been studying FND , trying to learn as much as possible , have a good team of specialists in Oxford. I can tell you we are told that FND is a glitch of the brains software , the Brains hard ware is good. FND can be random and move , it is so complex that they are still learning about it some amazing specialists confirm that FND for some can stabilise for some it can go away.
Whilst a lot of us have similar symptoms, for a lot of us we have amazing unusual, symptoms. I know for me that if my pain is under good control and I am pacing myself , I which is difficult then my FND is better, when I engage more than three of my senses, I can be better, well for a while. FND for me is cleaver , I adapt to the condition and it moves like a shadow behind me and changes, shifts. As I am learning to except this challenging condition whilst not ideal ,momentarily my anxiety is less , which I think helps keep the pain loop not so bad .
I have to take a minute an hour a day at a time , stay calm , take my medications so things can be better, for how long , well a little while.
Does it sound familiar to a few of you ?. If I cannot walk some times , I can run . My body can do things I never knew , I don’t even ask it to. One hell of a journey, where will it end . Your not along xxxxxxxx
I think sensory can help many symptoms and is better layered like you said (engaging three other senses). I think also acceptance when things don't go right one day is healthy, as in turn it reduces anxiety.
I was chatting to someone today and said ask yourself "whats the worse that can happen", often its the fear of the unknown that makes us more anxious and thus increase of symptoms.
Try and spot any signs before the symptoms start. The same person said to me "there were no warnings signs" and then in the next breath she said "she usually gets a twitch" before leg spasms .... I know its a split second but what if she had something in her pocket to grab (a textured stone for example) and focused on that to ground and calm her nervous system.
Yes you are so right, it is so complex and I think there is a point somewhere down the line that you have to have some faith in your own ability to experiment, trust your instincts, it can not be taken likely what I say from purely my own learning experiences and a number of Pain sufferers I know.
I feel pain is increases with depression being anxious, anxiety, stressed as you say predicting the unknown which intensifies pain . It is such a vicious cycle as for me , I cannot yet confirm but certainly pain linked to all those things causes my FND, it also creates other viscous feelings and symptoms.
It is definitely best to wake up in the morning and take a minute at a time try to be positive, know what things, tricks , distractions along with the balance of meditation you can take a bit at a time to lower the volume of pain, to understand the pain won’t hurt you , the thought processes you go through will harm both your ability to have a better day and help drive all those horrible things that cause you to be depressed.
It is a dangerous cycle. To be positive, understand truly your condition, particularly in the case of FND which is so complex you will have to relax , learn how to calm. Then you have a chance to gain knowledge on what is happening in your case and hopefully you can improve your situation.
It is a case of compassion at every level of frustration to also to a point fight your corner in a carefully controlled manner to gently push a very under funded under resourced NHS which also understandable causes a lot of suffering, stress, anxiety which of course increases a persons suffering. A simple example would be the struggle often to get your agreed medications, or to see the right person. This is when flare ups happen , when frustration is caused by the underlying underfunded system. I don’t want to make up it is all bad, but for anyone suffering any problem , experiencing new conditions , the journey to find someone that truly understands is very difficult.
When we are in a lot of pain for lots of different reasons, even as simple as damp to cold and it comes on quickly well , I am sorry but I make lots of mistakes to this perfect possible situation, my brain is on overload, blocked by a sudden mass of body suffering to the point , I was fine just a minute ago now I am stuck on the floor , can’t move and desperately trying to think gather what do , I do now. Although I am luck to have an amazing wife that cares about me and helps , Juliet will say did you take your medications on time what have you done to push yourself today, you know that really isn’t helpful at this time and the answer in nothing, so yes I am even more pissed off because nothing worthwhile. Bit by bit I struggle to pull on all the things I have learned and have better confidence to control this terrible situation. I , we can talk the perfect tactics but remember to grab and enjoy the good moments because by making the effort, remembering those loved ones around you , still need to be told you love them .
It is a hell of a journey, if you watch what foods you are eating , how much you are eating and I mean for me to much sugar which fuels my electric shocks , not enough water so more fatigue more likely to have consequences like constipation. Every little detail can help , you will still be in pain if you don’t exercise, go out. During your disabilities, Pain and worry remember to have compassion for yourself and try to stop and think about your situation and what my be a first step to calm and help you , the simplest things can help.
Again I draw on my journey, I did have a bad attack this evening, but now , I am ready to sleep and not be bothered about waking up a little later.
Hope for a few my words help you know your not alone, I am really sorry we have to all go through this , it seems really unfair , hopefully between us we can learn to bring the suffering down . Good night loads love to you all . Yes pain is real and we are not mad x
Can I also add if you feel a seizure coming on, get to a safe space/lower yourself to the floor if need be and let it wash over you and don't beat yourself up about it. The next one you can hopefully avoid.
I also know as a parent/carer questioning your loved ones at the time of incident/in a lot if pain is not the best thing, I have done it and sadly continue you to do it. Wait until they are calmer in a more happier place later.
Thank you, you really know your stuff, good help and advice. Its a case that I do need to be constantly reminded as each day can be hard struggle and as much when writing it sounds a lot easier . It is not when put into practice.
Have you been to the 'beyondpain' clinic in Bristol site ?Jeremy offers a lot of practical things to do to help with pain, and his therapy is based on ' The Way Out' by Alan Gordon, and then Chinese medecine. He has some truly gob smacking video clips on his 'menus', such as neurons firing in the brain, and mad chiropractic techniques... always something new to learn I haven't read the book, but if I lived near Bristol I would be at the clinic in a shot.
Hi David, its just what I have learn't and makes sense to me. Today I have been catching up on my reading book "How Emotions are Made" by Lisa Feldman Barrert and find it fascinating. I bought it for my son two years ago as I thought it would help him with his "interoception" and it was my holiday read a several months back. I scribbled several notes to share but have yet to finish the book.
Todays chapter was on "Mastering your Emotions", something that takes time but some key takeaways":
Exercise (Yoga for example as it incorporates breathing and helps calm us), Meditation (taking time out to be in the moment and forget our worries for a while, helps calm our nervous system) and healthy lifestyle (healthy food and plenty of sleep to recharge) all important to help maintain the body's budget. As negative feelings reduce the body' budget, its key to add some positive inputs to balance it out (singing, dancing/waving your arms about, laughing with friends (hold on to your social connections/make new).
Also separating the physical feeling from the mental feeling when you feel "miserable" and I quote from the book:
"When changes in movement and context fail to help master your emotions, the next big thing to try is recategorising how you feel. Anytime you feel miserable, it's because you are experiencing unpleasant affect due to interoceptive sensations. Perhaps they are a message from your body like "I have a stomachache" or perhaps they're saying "something is seriously wrong with my life". This is the distinction between discomfort and suffering. Discomfort is purely physical and suffering is personal."
Its goes on to say:
With practice, you learn to deconstruct an affective feeling into mere physical sensations, rather than letting those sensations be a filter through which you view the world.
You can dissolve anxiety into a fast beating heart. Once you can deconstruct into physical sensations, then you can recategorise them in some other way, using your rich sense of concepts. Perhaps that pounding in your chest is not anxiety but anticipation or even excitement.
I guess what it is saying is in reference to the above, is that anxiety isn't always negative, it can also be positive and is a shared concept that we have created and therefore has become a feeling we are all familiar with.
The next chapter is "Emotion and illness" but I first need to make some notes on the previous one.
I am thinking based on what I have read before, that it will have a lot to do with matched predictions and therefore if we change our predictions, we could potentially change the outcome and also probably to do with the reliance of medication to relieve the negative feelings which in turn causes more negative symptoms/feelings.
Its been proven that by calming our CNS and intervening if at all possible before symptoms commence, the outcome can be different A bit like learning to walk again, you build confidence along the way and then eventually it becomes an automatic thing.
FND is real, CRPS is real but the suffering is personal.
Hi , Thank you , I am very grateful for the time and care you have put into your post.
Yes its does help a lot because , I we are able to build up a picture of reinforcement in ways we can make small changes to out life style which bring huge benefits.
I like the bit of clarification about feelings. when you read a lot of the posts and where we are all trying to help each other in different ways. It is building a positive picture that there is a lot of hope , how we can make life not only a lot more bearable but actually starting to enjoy it again as long as I we have acceptance and compassion for what is going on in our bodies and head , meaning the Brain, how as you have well put is we think and tick does also have impact on our well being.
I am working today after a difficult weekend , I pushed my self to much in attending a business show a long way from home yesterday and needing to remind myself, I am not young , nor will I wake up and magically things will be a lot better.
I can see clearly and have started to have great respect for my condition and how much the knowledge , I have taken on board and is working to better my struggling life, I have felt so much more positive about things in the last few months and defiantly this has helped improve my condition.
I really like the way you have made it clear between emotions and thought processes to what is really going on in ones body and mind. I will write a Little more soon as I feel the direct truth from sadly peoples suffering and emotions are paving a real path to a much better understanding of what is proving to effect us / Me.
I am really great full to you and everyone on this site, Thank you for sharing
You said "I pushed my self too much in attending a business show a long way from home yesterday." One way I have heard is good is to think about what your CNS needs.
So the business show is far away? Make sure you have regular breaks on the journey, stay hydrated. Perhaps even stay over nearby, add a little relaxing stop over and take your partner/wife. Make it less about work 😉
Yes, I can tell you a funny story about this trip.
So on our way from Berkshire to Bradford a routine trip every other week it kills me two hundred miles each way , Yes my OT says David this really is not doing you any good correct a small business I moved up there just over eight years ago when I did not have the increased pain and problems I have now. I did what you said for once I broke the journey by staying this Saturday night in Coventry to visit the BBSA show and the continue after staying the night at the Warwickshire golf hotel , because it has a pool and spar . So we arrived at the hotel around 1530hrs after struggling the last half a mile because of all diversions every where due to a burst water main.
First thing reception says is before you book in we are very sorry but we have no water, which means no showers no loos working. I said is the pool ok, yes but no showers. I thought right after all my learning about pain management, to stop breathe recognise the situation, I said ok no problem we will book in I am sure the water will be on by tonight due to how hard we have seen they are working on it . Meanwhile everyone else is getting themselves stressed. So yes we enjoyed the pool , had dinner and then I said to Juliet oh, I have forgotten my sleeping medication three types of tablets over 45 mins that help me fall asleep , stop restless leg syndrome and help keep me asleep.
So whilst I thought I had everything! No . Juliet offered to go back and get them , I said no , I will stay calm , I am sure I will sleep.
No I was awake all night , zero sleep and a zombie. Yes I made the show and learned lots .
Well I suppose a disaster but , really I do see the funny side, the saying the best plans can still go wrong. So I tried, However there was a time no long ago I would have got stressed and my pain would have gone through the sky.
We all need constant reminders of all the little things that help us .
Oh bless, not good but I am glad you were able to accept the situation as it was and not get over anxious and stressed and laughter is the best medicine.
Have you ever tried sensory input for restless leg syndrome, maybe light compression socks or weighted ankle straps (can't recall name). Even cooling weighted blanket may help.
Hi LKE9,I tried to respond to your post several days ago & somehow I created a new, separate post/conversation instead. Anyway, I'm pasting it here:
-FND (formerly known as "Conversion Disorder," "Hysteria," etc.) is unfortunately, being slapped on patients by docs that are too lazy to figure out what actually going on with patients.Likewise, modern medicine still knows very little about the human body & thus does not have tests to identify everything that goes wrong with it. But docs MUST appear to have answers (and be able to bill insurance companies) so they claim that unexplained symptoms are mental in origin. It's a travesty. So many friends of mine nearly died or were left with permanent injuries/disability because doctors assumed they're symptoms were "mental" & presribed psychiatric/psychological interventions instead of real medical treatment.
Please be aware...Xanax is only approved for short term treatment (few weeks max). Sadly, docs write scripts for years or decades, never bothering to tell patients that it's benefits/calming effects are short lived (due to neuroadaptation) yet adverve effects worsen the longer a patient is on it (as with any psych drug or med that alters neurotransmission/neuroreceptors).
Benzodiazapines can actually cause a paradoxical worsening of anxiety (frequent panic attacks, or even akathesia--which can be deadly), along with a host of other psychiatric symptoms (iatrogenic med-induced psych disorders), and physical symptoms & health problems.
Additionally, withdrawal syndromes can be severe & prolonged & virtually no doctor is properly trained in slow, safe, tapering regimens, nor are they trained to identify withdrawal effects, thus leading to patients receiving addtional unnecessary & harmful psychiatric disorder labels.
Thanks , yes you are right, I lost a close fiend he was only 35 years old suffering with massive pain from having both hands cut off at the wrist and lots of surgery to help them semi operate. The pain never went away for him nor did the trauma of the Gili ton in his place of work 11 years earlier a metal works cutting them off.
Most people could not understand as he was paid compensation what his problem was.
Great the agony , disability of one hand hardly working and the other a little, the constant pain and trauma mixed with despair. He turned to drink Vodka to help the pain and mental trauma. One day he pushed to hard in everyway drink smashing things around him , hurting his body. The ambulance medics were brilliant they recognised what was going on with Jamie and said we need the Mental health team now to help at every level, Including getting his medication correct. They waited I did till a person arrived claiming they were the local authority mental team accessor. 5mins he came out and said yes he is alright, does not need help. I said you are joking, you give him 5minutes and make a judgement , what about his hands, he said what about them, I said have you seen the state of the bad surgery and how they don't work properly and the pain he is in, No, but I have lot of people to see yet so must go. I said if you don't help him he will be dead soon. He said well he needs to drink less.
He died three months later why, he tried himself to come off the drink so he stopped within five hours his heart went into shock and stopped, the paramedics said they could save him if they gave him a little of alcohol into the blood stream but were not allowed to . after 45 mins he was dead. So sad, he worked 24/7 with Emma's charity for the homeless the NHS System is still under resourced badly . Depending on where in the country you are , or who your lucky enough to see is a lottery. It really does not help our mental health or health.
Of course it is not all bad, there is that magic word hope, can be a frustration word sometimes.
You can get through working with taking out little bits of information from this site , more help than is out there often.
Keep your chin up and Thanks for your care and help. David x
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