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37 yr old with tics since age 7 HELP!


Lottie
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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 !!!!!!!!!

 

 

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Hi Lottie

re the measles, that could very well have significance! The condition PANS includes all kinds of infections as it has become evident that the strep alone as in PANDAS is not the only microbe that can trigger tics etc in some people. I would suggest you ask about this on our PANDAS/PANS forum http://latitudes.org/forums/index.php?showforum=17

 

As far as the tics/TS go.....many of us here have opted for nutritional and other supplements and elimination of tic triggers to improve things. My own son had such bad side efects from many medications tried. We discovered latitudes magazine and read an article about Bonnie Grimaldi and her supplement protocol, and started a similar plan, tweaked to fit my son's specific needs. The improvement was so dramatic that, 12+ yrs later most people do not even know he has genetic TS.

I have a link to what helped him in my signature below, as well as a link to our Helpful Threads section pinned here to the top of the forum

 

Hope you find info to help you

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