Hi everyone, I hope you are well? I have just gone through the worst experience ever with Cervical Dystonia...I have tried every medication under the sun, most of which have made me go nuts! I’ve never been so depressed in my life. I am only 42 with a wife and 3 wonderful children, I would say that Cervical Dystonia has ruined my life making me have non stop pain and neck turn to the left, recently it has got worse spreading to my shoulders and I have no break from it whatsoever..I’m exhausted as it won’t let me sleep. I hate all the drugs I have taken, some have made me hallucinate and my memory is really bad, I hate going out and my life has turned upside down. If it wasn’t for my Children and Father I really don’t think that I would be alive now...I know this sounds extreme but when you have a bad case of Cervical Dystonia like I apparently have it’s literally like a tap dripping on your head, it never stops, the pain never goes and you never get any rest. This condition is so stupid, I hate it and never thought in a million years that I could feel like this...I was super confident and used to have a great job, I now can’t drive and have gone from 12stone (all my life) to 9st 2lbs! Bottox doesn’t work on me and most pain killers don’t either. I can well believe that around 84 men in the UK per week take their own lives, this saddens me immensely to the point that if ever I meet anyone with this younger than me I wish I could take away their pain and even have it myself. Awareness of Dystonia needs to be brought forward so that people understand how debilitating it really is. As you, I certainly did not know anything about Dystonia before I was diagnosed almost 2 years ago. Now I don’t work, don’t drive, stay in as much as possible (thank God for Netflix) and have come off all social media to disappear from the world. I used to be super confident and looked after 33 gyms across the UK, I also ran my own Bootcamps and PT. I have put a link of me below so you can see how confident I was...now I’m a man that can’t do much and lives in constant pain. I can’t see a light at the end of the tunnel but am editing to see s Professor of neurology at St George’s, Tooting. The wait for this appointment will have been 5months by the time I see him, I’ve had to wait this long just to see him...I feel pain every second of the day so 5months feels like an eternity. Anyway, if this hasn’t made you sit in your car with a hose pipe from the exhaust pipe to the window I hope you all get the help and support you need and deserve. No-one knows how you feel better than you and trust me I hope to God that there is soon a cure discovered for this ridiculous condition. Love and light. Burrowman. x
Hi burrow man I know dystonia is a very difficult condition to live with I am 32 this tear and was diagnosed 5 years ago, I myself feel like you do sometimes and I stay in as much as I can too and yes thank god for netflix lol, I have been on so many different drugs to try and help my condition witch affects my legs back back and hands I also have fits (non epileptic) I have also found that recently my cognitive skills are staring to go a bit funny and sometimes I find it hard to speak, but please don't let it keep you down try and look for the little Ray of light in the world it is their I promise, don't give up one day this disorder will be more known about and hopefully someone will come up with medication that will help, I have thought of setting up a Facebook page for people like us so we can chat and possibly start some sort of group that can meet up and give each other support
Thank you Toniavis...it’s funny reading the threads on here as I can relate to so many posts it’s uncanny. Thank you also for your kind words, talking about my problem is the best medicine sometimes but the pain can drive me nuts sometimes, all I am in now is Dihydrocodeine and Antidepressants, every day I wake up with the worst headache in the world and I hate it. I have an appointment on the 31st May with the neurologist so I just hope this can be dealt with. I’m not on Facebook but any support like that is a great idea, if I can’t help myself, I’d rather help others.
I hope they do help you hun, the knowledge of this disorder is still being found out unfortunately but fingers crossed they will have something soon, I myself am on clonazipam, pregabalin and amiltriptaline to try and help with the pain and help with sleep, but it is a trial and error type of game we have to play at the moment, good luck to you though on your appointment, I would love to hear how it goes, and I'm always here if you need to speak even if it is just on this site x
I can’t thank you enough for writing your message. I can relate to every word. It’s the best note I have seen on this forum in the three years I have been a member.My only difference is I cannot say I am in pain every second. It generally starts as soon as I move the wrong way. It increases as the day wears on. Evenings I am useless.
I am on pregabalin and zopiclone. I like you found Botox didn’t work . Zopiclone I do find brilliant in that it allows me to sleep. .....a life saver. Have you tried it?
Like you I have become a different person, confidence goes and I am now a much more boring person as a result. Would be happy to share more info if it helps but don’t worry if not helpful.
No one, simply no one understands except those who have the same symptoms.
Thank you Rkai...I’m trying to stay away from sleeping pills and drugs like Tramadol and Diazepam as they made me hallucinate like I was on a trip! Isn’t it weird reading threads and thinking ‘yep, yep, yep that’s me’...I hope that we can find a way forward, I’d be happy to have surgery, I just want it gone. 😏
Hi there,I had deep brain stimulation in 2010 for cervical dystonia and a miracle happened.My neck was in retrocollis and 1 day after surgery it was straight.If you are thinking about the surgery then go with your gut feeling like I did.Go for it Burrowman.
I don't want to go into too much detail except that my globus pallidus was blocked off with electrodes to stop the severe neck spasms.It was a extremely difficult time for My family and I but I never regret it as I was on too many medications and felt it was the only way forward.I hope this information has been useful for you and good luck taking your care forward in the future.
Hi Tim, I was prescribed pregabalin as I was experiencing intense burning pain in my left arm and the back of my neck.All I could do for relief of the pain was lie down.Then the pain would knock me out and when I awoke the burning had subsided.So pregabalin in my case was brilliant.I do hope you can find the right medication to benefit your symptoms even if it means getting a good night's sleep.
Thank you so much JJJ160, this forum has been so helpful and positive, I really appreciate you comments. I can’t believe you passed out, that’s terrible. The Pregabalin seems to help but only in high doses. I hope they don’t become addictive! 😞
I have been on Pregabalin for 3 years. In order to avoid side effects, took them slowly using low dose pills and then gradually increasing over some weeks. As it happens I am now due to take a ‘drug holiday’ again reducing very very gradually so the neurologist can check they are actually helping . I haven’t started that yet but it will be useful to see if any of my current symptoms relate to the drug rather than the cervical Dystonia itself.
I guess like most things drugs work differently on different people.
Anyway good luck with it.....but gradual introduction helps I think
Hi burrow man pregabalin dose seem to help I am on 100mg 3xa day they do help take the edge off x
Personally I think as you have a very severe dystonia that the deep brain stimulation would be worth talking over. Today I spoke of meditation and a type of self mind cures but you seem to be more severely struck. The two I have mentioned are good at beginning the process of relaxation though it takes a lot of practice. However you seem to have the time. Shutting out all noise and using a guided meditation will be your first step. Then have the goal in mind about the brain stimulation. Always keep a positive light in front of you and always listen to what your inner voice tells you is right for you. We are making suggestions but you made a good first step in opening up, good luck and fight for the treatment you want.
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What a lovely message...thank you. x
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You are very welcome. Hope you continue to let us all know how you are getting on. So pleased now I did come on here too. Wonderful.
Hi Burrowman, Dystonia has changed me too, I used to be very confident, working three jobs walking 6 miles a day and after 3years going to and from the doctors, because I was in agony but had to still work I was eventually diagnosed with a chronic spinal condition, was spinal surgeon who told me there was something else going on and he was right started having spasms, they would last from 20 mins to 24hrs on and . and just wanted someone to rip my arms and legs off and have been on all different medication but am on Pregabalin for my neck as I have wear and tear to the cervix and it has really helped me alot, also clonozapan to keep my muscles from tightening and madopar. I only go out once a fortnight with my friends neurologist told me I am not to go out alone as I am too vulnerable. My son has found it very difficult to accept that I barely see him, because was I'm not the mum he knew, it does change you but people don't realise underneath you are still the same person it's the debilitating conditions that change you. I was offered anti-depressants said I'm not depressed I'm fed up, I would question why they've put you on them and not actually given you something that will help your pain.
Good luck with seeing specialist in tooting and try and keep positive for your lovely family.
Thank you...I have thought for a while I wonder if something else is going on...update on the Pregablin, I was given 28 capsules and they made me go nuts! I’ve just moved out of my 4 bedroom family home and at 42yrs old I now live with my Dad. I’ve have just done cold turkey from the Pregablin and it’s been awful. I miss my kids and sometimes I just want to be knocked out from the pain. All pain killers and medication seem to really effect me but in a bad way. I am willing to try anything but hate all the medication I’ve been given so far as it’s made my life even more desperate. Thank you for your kind words, I wish you good health and light. x
DBS is too invasive, drilling of the skull, batteries under your skin in the chest, etc... plus if you switch it off(you have a remote control) all the spasms return. Basically DBS is sending electric impulses to the areas of the brain hoping to override the wrong impulses that are causing dystonia. Works 50/50 and sometimes improving only some of the symptoms.
You know I used to be a gym rat and a competitive powerlifter. Now I cannot even lift a spoon without causing spasms) Also lost a lot of weight. This happens because the dystonic muscles use up callories.
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