Not yet with it

Hi all, have just started to read posts but not making much sense yet. I made it to London, Great Ormond Street last Wednesday. Can't believe how much it's taken out of me, struggling to even write this but didn't want you all to think I've not bothered. Have been accepted for a 4 weeks program inpatient but their were buts. Not accepted if on any medication so am struggling with pain, confused 😐, I hadn't taken any for 3 weeks prior to appointment as bad cold and didn't mix cold stuff with tramadol and Diazepan. Just taking 1 tramadol when can no longer hold out plus using hot neck things for 8 hours on the bone that sticks out of back of neck. Hopefully get a letter explaining about appointment as don't remember much and lots of questions about why I hadn't had appointments for stuff that I should have had but have no idea as haven't heard anyone mention any other appointments with anyone?????? 4 to 5 months waiting list and I have to be realistic about what I want help with. ME I want to be me, but kept saying you have to be realistic. Am so confused, sleep is worse if possible, tired, pain all mt teeth hurt 😭 pain behind ears, headaches, pain through 1 eye, so confused. Love to you all and not forgotten any of you, well not all the time. Big hugs to all. πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—β€οΈβ€οΈβ€οΈπŸ˜³πŸ˜³πŸ˜³πŸ˜³πŸ˜³πŸ˜³

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  • Yippee for the inpatient program... but why such a long wait and why can't you be on your meds?? Strange! What you want help with.... everything please.... pain is so draining isn't it.... so if they could fix the pain as top priority... I've no idea... me... I'd like my energy back... I'm sick of being to tired to live and when I do exert myself I pay for it by being even more tired....I so understand you want YOU back.... I want ME back too... I'm going to look into my essential oils as they have been brilliant in the past ! For sleep I found cedar wood and lavender knocks my kids out and me but I get horrendous night mares.. πŸ™ˆ. Now for pain I've got a recipe I can make up! I did it for a Freind in ny and she swears it's the best thing she's ever had and she's in the medical profession!! I'll look it up never thought about using my self... lol plonked I am πŸ˜œπŸ€£πŸ˜πŸ˜‚πŸ˜….

  • Hi Hun, the wait is better then we thought, the last nuerologist we saw at St. George's said I would have to wait 12 to 15 months. They were not agreeing with medication as they thought professor Edwards had put me on programs already to help me without medication but all we have had is a letter apologies from professor Edwards saying he was sorry and thought I had been put on these programs. As for realistic, there is just sooooooo much. Do the spasms cause the pain or the pain cause the spasms, taste gone or changed, smell going, walking really gone downhill this year, co ordination not good this year, use lavender on pillows and sheets, I think they thought a lot of my symptoms were caused by addiction to Diazepan even though I was having 2 day and hadn't taken any for 3 weeks before appointment, so then they said it must be withdrawal symptoms then. They asked do I always speak so slowly (I didn't know I was) plus as I've had no help from anyone yet about anything, whatever I try to help myself makes me worse. Am I making myself worse by trying or am I meant to give up. Will have to see what letter says as can understand writing better then talking. My partner said they won't put me on cancellation earlier as I've had nothing of what I needed to go on the program. If I don't sleep or manage pain or seizures I won't complete the program. The noise, movement was overwhelming even with ear plugs and headphones on. London was just overwhelming on all senses. I don't know what programs I was meant to have had from professor Edwards as I haven't had them, maybe the letter when it comes will explain. πŸ€—πŸ€—πŸ€—πŸ€—

  • Ps the electric shocks in my back and neck are driving me insane, anyone know of anything to help. 😭

  • Sorry you are feeling so poor.

    I don't get why they don't understand that you want to be you.

    And proud of you for being able to stop all meds. That's a big thing to ask someone to do.

    Hope the 4 weeks gets some positive results and sending you lots of positive thoughts and hugs πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ™πŸ™πŸ™

  • Thank you 😊 Hun, means a lot to me. Want even to be like you, to go away and have a break from my home without all the baggage or at least some of the baggage, just a bit of life back. To see my grandchildren without headphones 🎧 on. To understand conversations without having to shut my eyes and struggle. Just so much to ask help for, don't know what to even prioritise. 😳😘

  • Hello Lisa anne,

    I understand all that you say as I have been through too, have had NFD for over 5 years.

    You are very lucky that they are seeing you at Great Ormond Street as loads of us don't get referred to the best hospitals. I don't understand why they won't take you if you are on medication? THIS IS WRONG. You need to speak to them again, or get somebody else to. I understand what you are going through now with no meds-how horrible!, you cannot be left like this. Phone them again and ask them again to explain ALL to you, or get somebody else to do it for you if not up to it. Please start to take all your meds again and await a reply from them. PLEASE DO THIS, THEN YOU WILL NOW THE NEXT STEP.


  • I agree. Iv never heard of a doc who would advise to stop all meds. Even if you asked your local pharmacist they would be shaking their heads.

    So you might be feeling symptoms of your illness but on top symptoms of stopping a bunch of meds at once.

    If you can't get a hold of anyone neuro I'd suggest talking to someone at 111 on the phone, not just an operator but ask for a doc as they can call you back if you speak to a nurse first πŸ€—

  • I do agree with what your saying but as I had already stopped for 3 weeks with taking the cold remedies and only using Diazepan and tramadol to get to London, I don't want to start again and then stop. I take tramadol when pain at its worst but no more then 1 a day. The programs that they thought I had been on were to do with pain management and others that I've not been put on that don't rely on medication. When I go inpatient the day starts at 9am with 3 courses through the day if I can't manage to get through them I will be taken off the inpatient program. I need these programs that they thought I'd had. Have to wait for letter to come explaining what they said as don't really remember or understand other then bits and pieces. They want me on these programs I haven't had yet so that I can get through the 4 weeks as an inpatient. I can't lose this opportunity through taking Diazepan, although Diazepan dosent knock me out or even let me sleep it takes the edge off the spasms but they said as Diazepan dosent work on me as it should why Do I take it. When they realised I hadn't been on any non medication programs to help manage symptoms they are writing to whoever to get me on them. That's it really until we get letter explaining what and why. I'm just not going to lose this through medication, I'll never get chance again. πŸŽ‰

  • I understand, just worried that you are going through some kind of physical shock and not helping your positivity by completely stopping. But you know your body better than anyone.

    I know how bad I was just stopping pregabalin from Australia they wanted me on gabapentin in U.K. Same family of drugs but withdrawal so bad I refused the gabapentin.

    I honestly think day 1 of medical school is benzodiazepines bad. Never prescribe. Tell people they don't work etc.

    Iv been researching SjΓΆgren's now and they are recommended as the last effort for people who can't take SSRIs, SNRIs, or the trycyclics etc.

    If benzodiazepines were that bad they would be taken off the market. I know for a fact they are used for fixing fractured bones, to relax muscles and allow for pulling, for cerebral palsy patients who's muscles, tendons everything gets really tight.

    I take them now and again when Iv not been sleeping at night due to cramps and tightness and it's amazing the difference they make, im lucky I have a doc who understands for me they are the only drug that doesn't give me horrid side effects.

    I don't get high, stoned, or anything people who abuse them apparently do.

    If taken in the right quantities for the right reasons these drugs can improve quality of life where others don't xxx

  • My first year, I had so many different Meds, some made me angry, some made me lose my marbles, I threw my daughter out of the house, she had to phone my partner crying 😭 her eyes out. I've said nasty spiteful stuff to my partner, daughter and my parents and don't remember anything. Some made me so depressed. My partner read side effects and went to the pharmacist in the end, explained to her what was happening to me and she said I was too something to the medication and that I was getting all side effects and becoming more ill. I was under 7 stone in weight and just wasting away. The only medication I don't get much side effects from are tramadol and Diazepan but they have never worked for me as they do for other people. One day I was so angry I took 7 Diazepan to do something, they didn't do anything, I walked in circles for hours shouting. The 3 weeks now 4 I haven't took them, the rotten cold I had. My head was so stuffed up and I felt so ill was the worse. Now it's just the symptoms I had but a bit worse or more pain. No improvement but I didn't expect any. I've never had medication before all this started so had no idea that medication makes me really ill. Just got to get through and get on inpatient. No ifs or buts, got to do it. And will do it. πŸΎπŸ™πŸ’ͺπŸ€πŸ‘€πŸ‘πŸ€—πŸΆπŸΆπŸΆ

  • Sometimes pharmacists are good. If you get a good one keep them as they know more about the drug that the prescribing docs do and can be good for advice. They like giving advice. They might even pick up - hang on you are taking this and this. Those don't agree together so no wonder you are having issues.

    It's hard because the illness itself can make us believe that our mind is that way because that is us when really it is the drug.

    I had one medication for emergencies but it would give me side effects like I would feel weird is the best way to describe it but I would tell myself it is the drug and this will wear off in 48 hours.

    It's a shame that there is practically no drug out there that just does its job.

    Remember you are stronger than the drug. You can get through this and there is a light at the end of the tunnel and you have gotten that inpatient stay. They can't ignore you when you are with them constantly for 4 weeks.

    Also you might meet some fellow sufferers who totally get what docs might initially not.

    Can't wait for you to come back with positive tales. You keep us all going πŸ€—β€οΈπŸ™

  • Thank you 😊 Hun, that's just what I need to hear. I will be with 5 others like me with similar symptoms. And I will love to talk to them, god I haven't been able to be sociable since this started. Loneliness is a killer. Just to go out on a lovely day, dress up and sit in a town square with a cup of coffee that tastes like coffee and watch people and feel a part of society again. To watch my grandchildren at school plays, gymnastics, just to see them would be amazing. Anything will be better then nothing which is all I have now. β˜•οΈπŸŽ‰πŸΎπŸ₯ƒπŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—

  • Hi Lisa-anne

    Sorry honey I'm feeling mentally out of it myself at the minute so I can't make a coherent sensible reply.

    Just know that I'm thinking of you and hope and pray it all works out.

    Love and hugs, Margaret. xxx πŸ’œπŸ€—πŸ’œπŸ€—πŸ’œ

  • I have to confess, this post gave me a wonderful bit of calm. I work very hard (and it helps immensely) to distract myself with anything and everything I can find.

    Google and I spent a lovely half hour figuring out why Great Ormond Street was named that (the Earl of Ormond), who founded the hospital (too long to fit in parentheses), how Peter Pan fits into all of this, and how they saved and moved a stunning Byzantine style chapel from the Victorian building.

    So thank you for that. You never know what good you do sometimes.


  • Always welcome, beautiful building, but noise, congestion, sirens, so much moving everywhere. Total shutdown of senses. Still got there and home. Made it. πŸŽ‰πŸΎβ˜•οΈπŸ˜³πŸ˜ŠπŸ‘πŸ€”πŸ€—πŸ€—

  • Track down that chapel if you can. It looks amazing. A dose of beauty is always good medicine!!!

  • I've heard of a number of people who have been asked to go off all meds. Mostly this is a good idea, but some of them can be quite dangerous to just stop, cold turkey. I was on Pristiq when I forgot to add it to my weekly meds pack. By day 3, I was off the planet sideways and had the worst headache. Then I realised that there was no Pristiq in the meds I had taken that morning (since I take 16 tablets every morning, that was quite an achievement, noticing that this one was missing).

    Anyway, I googled the side effects of going off Pristiq cold turkey, and it was horrifying! A large number of people coming off this one get brain jags, like huge high voltage zaps of electricity being discharged inside the brain. Very painful, and once they start, you've probably got them for life OMG - how awful - permanent damage from stopping a medication! I never got them, fortunately. Turns out that the Clonidine and Physiotens that I also take to calm my autonomic nervous system also calmed/prevented this side effect. I just had to increase the frequency of taking them to keep the headaches away. Seems my subconscious mind knew that I had to stop that medication because it was giving me lots of extra seizures, and by the time I figured out I had stopped taking it, I was over the worst of the withdrawal symptoms.

    So, stopping meds can be extremely dangerous. But if you've already gone through that process, and survived, then it doesn't make sense to go back onto them again.

    What you might find is a much safer medication that is not addictive, won't hurt you like the ones you were on.

    I think a lot of people are automatically put onto some of these strong meds because the doctors know they work for most people, but completely forget that they do take your life away from you. Perhaps for a 'normal' person, they can cope with those changes, but for us 'fragile' people (i.e. our bodies are a lot more sensitive and the balances have to be finely tuned), then I think doctors need to be a lot more creative in finding meds that will work without the side effects that make FND symptoms worse.

  • Also, don't forget Magnesium and Vitamin B12. B12 is food for nerves. I've seen some people be given daily injections for a few months (yes, seriously!!!) and some of their FND symptoms have been reduced significantly, while others haven't. If you are getting shooting nerve pain, B12 will usually help. Your doctor can give you injections - weekly, monthly, whatever (3 monthly is normal). Or you can take tablets. I can't tolerate the injections, so take tablets.

    Magnesium is food for muscles, especially tired, weary, jerky, cramping muscles. You will be amazed at the difference it makes, if you have a movement disorder of any kind. My doctor told me that the body will absorb what it wants, then expel the rest, like the colonoscopy prep stuff. So, keep increasing the dose every few days until you get diarrhoea. then back off just a little bit. If I ever complain about muscles, cramps, whatever, he asks if I have diarrhoea...then smiles and nods knowingly. My original normal was probably 6 to 8 huge tablets of various kinds a day, or their equivalents in Epson Salts baths, magnesium lotions and oils rubbed in. Now I take 3-8 including the dissolving tablets (blue MG Voost brand), which is working well for me. As soon as I get a seizure or cramps, I take at least 1 tablet, and probably 3 more in the next hour.

    Every time I step off a kerb/gutter, or carry a handful of veggies in my arms back to the supermarket trolley, I am reminded of how much magnesium has helped me. 15 years ago I could do neither, and my arms were a constant painful mass of tight muscles. Now they are like muscles should be, and I can take them for granted.

  • Hi Vivienne, I got tested for B12 after reading it on here, my levels are normal, so I take magnesium and B12 off my own back every day. There are no other medication anyone will give me. The side effects I got were so bad from pregab, lyrica, anti depressants by the bucket, and these are just the few I remember, there were many more. From seeing professor Edwards last year no one will prescribe anything to me. I'm not doing great and have had to take a few tramadol for the unending pain but have refused Diazepan as it is 5 weeks next week I've been off them. I think from what you have said I will up my magnesium and see if that helps, it certainly can't do me any harm. Thank you for replying, it's lovely knowing there are others out there even if I'll never see them, they are here always. πŸ€—πŸ€—πŸ€—πŸ€—

  • I had all of those meds after my accident but self weaned and realised that each drug gave me anxiety. Not bad but I felt my tension lessening each time one wore off.

    Do we have anxiety or do the drugs give us it?

    Because as iv said all along ,my symptoms are all organic

  • It wasn't just anxiety, it was anger, confusion, so muddled, fatigue, crying days, suicide thoughts. And the worse of it was they didn't improve me just made me soooo much worse. Feeling ill with medication and FND, just hell on earth. 😑😑

  • Just think did you have all those feelings and to the same extent before or after stopping the drugs.

    And just hang in there it will lessen as I think you are already seeeimg changes.

    No one gets how bad this is to do this.

    They are not giving us lollipops then saying you can't have one again.

    That's the worst Fnd is like this evil gremlin.

    Iv been zombied so much this week I haven't answered my friends overseas. One I feel really bad about as they don't get it.

    And today sounds great but my cleaner started and I felt so ill I wanted to cancel hut t was too late so I told her I'm having a bad day. Il lie on couch then move to bedroom with my little blanket when you need in there.

    Iv gone beyond caring what people think

  • God no, feelings were definitely worse through Meds. Since I've not had anymore prescribed my mood has been quite stable, pain is what it is and I am still relying on tramadol more then I want to. When you've never had to have medication other then occasionally antibiotics or cold remedies it's a shock to realise how ill they made me. I don't remember much but unfortunately my partner and family do. I wasn't myself at all. Sorry your having a rough week and hopefully you will pick up now your home with puss 🐱. Rest well and cuddle up with your fur babies. Best wishes. πŸ±πŸ±πŸ±πŸ‘πŸ‘πŸ˜΄πŸ€

  • Sorry to hear about your pain but glad you are getting back you x

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