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Everything posted by Lottie

  1. Hi T Anna many thanks for replying!!!!!!! no i haven't tried steroids but i have had antibiotics but only to treat other illnesses? Steroids have never been mentioned to me. I am going to see a professor of neurology in london, and i am hoping he will know more about PANDAS, tourettes and tics. I definitely need someone who specialises in this rather than a general neurologist. I am finding the Pramipexole have reduced the tics dramatically but due to horrible side effects i don't know if i will be able to continue taking them? The doctor you mention where is he based? xx
  2. Hi thank you so much for taking the time to reply!!!!!!!!! Yes i do have anxiety also moderate depression for which i take Sertraline. Please find below my story, it is long winded but its my template i can just copy and paste (its much quicker) 37 yr old Female Suffered Tics Since 8yrs old PANDAS as a possible cause? My first tic appeared at the age of 8.(that i can remember anyway) I would open/stretch my mouth, this lasted a very long time, I still do it on occasion now. Around the same time I began to jerk my torso, it was like I was tensing and pushing my stomach in and out. This made me feel really sick especially after food. People would always ask “have you got the hiccups” I quickly adopted this as my cover, this tic is still with me although maybe not quite so frequent. Age 11 the real nightmare began, I developed a violent head/neck jerk, I would jerk my head forward jutting my chin out sort of like a chicken. This tic has been the bane of my life beginning at school, where I was mimiced and made fun of. My school days were spent trying to find ways of getting a seat at the back of the classroom where no one could see me. A vocal tic developed also, it was like a short hum which I tried to cover by clearing my throat. Long story short I was taken to my GP, refered to neurologist, spent a week in hospital undergoing ECG testing. The diagnosis then was segmental myoclonus and clonazepam perscribed. This had no effect. I was finally diagnosed around 19 with Tourettes? I had mixed feelings on one hand I was relieved that there was a medical cause for my unusual behaviour, but on the other I did not want to have this disorder. I chose not to try medication as I was afraid they could make the tics worse. Where I Am Now I am now 36 and have endured the violent head jerk for 26 years. My neck and shoulder muscles are permananetly tense beyond belief, I have very bad pain at the top of my spine which I am sure is damaged. I finally had enough and returned to my neurologist, he has referred me to a professor at The hospital of neurology UCL in London. He has prescribed Pramipexole (used to treat parkinsons and restless leg syndrome) which is slow release and the dose increased gradually every 7 days. The side effects have been horrible nausea, insomnia, panic attacks, depression, feelings that I am a spectator of my own life, disinterest in things I previously enjoyed or found comfort in. I felt completely lost and actually quite frightened. However they have dramatically reduced my tics and the side effects seem to be subsiding, so I am very hopeful PANDAS AND MY THOUGHTS I will start by telling you ( very importantly) that I had measles very badly when I was 9 months old, straight after my mum noticed a jolting in my stomach when she changed my nappy (big coincidence). We mentioned this to the neurologists from the start as we felt this could have been the cause of my tics ( maybe the measles damaged my brain in some way) we got no comments on this really. I still believe this to be the case so have been researching. I came across the disorder PANDAS ( paediatric autoimmune neuropsychiatric disorder ) This is a fairly new discovery so for those who have not heard of it I will try to explain (apologies for simplicity). It is commonly associated with the streptococcal bacteria but also other infections like chicken pox or measles!!!!! When a child contracts an infection or Strep throat, the autoimmune system kicks in to fight, but becomes confused and starts attacking the cells of the brain or heart mistaking them for the infection. If this occurs then the child / person can be left with motor and or vocal tics and symptoms that mimic tourettes. My other tics include... Banging my teeth together, raising/furrowing my eyebrows. Regards Lottie
  3. Hi i would appreciate any advice or thoughts i had measles age 9 months. Immediately after my mother noticed a jolting movement in my stomach. I am now 36 and have suffered tics (ones i can remember) since 8 yrs old, including violent neck/head jerk. Could it have been the measles ??? (PANDAS). I was diagnosed with tourettes at 19 but I'm not convinced. Am i too old now, how would they know? there is no history of tourettes in my family.. Lottie
  4. Hi, Sorry to hear your daughter is a tic sufferer. I am also new i am 37 yrs old and have lived with tics from the age of 7. Beginning with mouth opening/stretching then body jerks i my abdomen. At age 11 the violent neck tic arrived ( i jerk my head forward where my chin juts out) I have suffered this constantly now for 27 years. I have decided to try medication now as the pain and discomfort has become unbearable. I have just started Pramipexole ( Mirapexin) slow release, and the dose increases every 7 days. These are mostly used to treat Parkinsons and restless leg syndrome . Although these are proving effective and have dramatically reduced the tics !!! I am suffering some unpleasant side effects. I will perceiver a little longer but should side effects continue/worsen i will stop and try another medication.
  5. I have a violent head tic, I jerk my head forward ( jutting my chin out) I do this approx every 3-4 seconds all day every day. I have had this tic for 27 years continuously. I am in extreme pain in both neck, head and upper shoulders, which are constantly tense. I am now experiencing a burning sensation under my skull ( as apposed to on skin) I am sure this is as a result of the tic. Does anyone else have this or a similar tic that has been ongoing long term Any advice would be great I am sure i am doing physical damage now !!!
  6. My Story Hi, Im new here and wanted to share my experiences, both good and bad. If anyone has any advice, thoughts or similar experiences please reply ! I am a 37 yr old female and have lived with tics since the age of 7. I contracted measles at 9 months old and was extremely ill. Immediately after, my mother noticed a jolting in my stomach when changing my nappy (I mention this as I believe it was the cause ) The first tic I recall was mouth opening/stretching, this proved very embarrassing at school. I still do the mouth tic but less frequent. The next tic appeared around age 9 and was a jerking in my torso. People would ask “have you got the hiccups” I then adopted this as my excuse. The real down side to this was it would cause me to feel very sick. This tic is still with me now. When I started secondary school age 11, the fun really began. The worst tic yet reared its ugly head, a violent jerking forward of my head, (sort of like a chicken) where my chin juts out. This was accompanied by a vocal tic, a short hum which I covered with clearing my throat. The vocal tic has now gone. As you can imagine the kids had a field day. Assemblies were torture as I was visible to so many. ( hence it was not long before I skipped them) I was very aware of the mimicing and laughing. I spent all my day focused on getting a seat at the back of the class room so that no one was behind me. This was a really horrendous time for me and my school work really suffered. I didn't understand why I was doing these bizarre things, and no one could tell me either, was just put down to a nervous twitch that I would grow out of. I just wanted to hide myself, be unnoticed. To cut a long story short, it was my sister who is 5 yrs older who said to my mum “ no this is not a nervous twitch or habit don't you think if she could stop, then she would”. The tests begun EEG (negative for epilepsy ) week stay in hospital Talk talk talk ( segmental myoclonus diagnosed) Clonazapam was prescribed with no effect To be fair I don't think they knew very much about tic disorders then, certainly not as much as now. Eventually age 19 TS was diagnosed I felt a mixture of relief, that there was a medical reason but a sadness also. My partner was fantastic and has never been bothered by my tics, we married in 2000 and now have two beautiful boys. My violent neck jerking has been with me for about 26 yrs. The tic happens every 3-4 seconds all day every day, together with my less severe tics. The neck pain, muscle tightness and fatigue have become almost unbearable. I have now begun to experience a burning sensation which I can only describe as under my skull as apposed to on my skin. I am sure this is connected to the jerking. I decided to see my neurologist as I am at my wits end and after 27 years I was ready to try medication. I was prescribed Pramipexole (Mirapexin) slow release, gradually increasing the dose every 5-7 days. I am currently on 1.56 mg. My tics have REALLY decreased which is so great but the side effects are concerning me. I feel detached, not myself, memory loss, insomnia, no longer enjoy my favourite things, nausea (this I can cope with ) but its the psychological feelings that are concerning me. I am going to give it until after the weekend and if I feel the same I shall go straight to Doctors. I am also on Sertraline for depression ( been on these for a while) and Propanalol, when required for anxiety. Basically I rattle! I have also been referred to a Professor at the hospital of neurology UCL where I plan to discuss this in detail. My other tics include eyebrow raising/furrowing, banging my teeth together and occasional tapping. I mentioned measles earlier, this is because I have just come across PANDAS ( paediatric Autoimmune Neuropsychiatric disorder) this is mainly associated with Strep infections but other bacterias as well, chicken pox was mentioned. Basically the immune system becomes confused and attacks parts of the brain/heart mistaking the cells for the infection thus causing tics, OCD and in some cases behavioural changes (Apologies for medical inaccuracy its quite confusing). Both myself and my family believe the measles may be the cause. On a positive note. No matter how hopeless you may feel growing up with tics, you can live a normal life. I have a supportive husband who I met age 16 ( and a few little boyfriends prior) so I cannot have been as hideous as I felt. I have grown to be confident, no longer embarrassed of my tics and have no problem explaining if asked, although people are much more aware and educated about TS and tics. I have gone from that young girl hiding in the shadows to singing in public to many people ( jerks and all ) although they are less when I sing. So please don't lose heart. Please if anyone has similar problems, advice or thoughts I would really love to hear from you !!!!!!!!!
  7. Hi Danielle I have just discovered this forum. I am 37 and was diagnosed about age 20. You sound very similar to me! My tics began age 7 with mouth opening/stretching, then others came like jerking me stomach people always said "have you got hiccups". I used to just say yes as i was embarrassed .I had a vocal tic for a time it was a short hum sound which i tried to cover by clearing my throat.when I was about 17 another motor tic reared its ugly head, a violent jerking of my neck, i jerk it forward (like a chicken ). I still have it to this day and my neck is so painful and my muscles permanently tense . I decided to go back to Neurologist as pain is getting hard to bare. I have started taking Prameprexol (used to treat Parkinsons) It is beginning to help. However i am not convinced i have ts. I say this because i had measles very badly at 9months old and my mum has always said she noticed a jolting in me abdomen straight after, so i am now researching PANDAS. I have been referred to a Professor at UCL Neurology hospital i will be discussing this, will be interesting to see what he thinks. You didn't mention what tics you suffer from ? how has it impacted your life? hope you don't mind me asking.x
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