Hi I'm new and suffer with violent neck jerks and other tics

[Lottie]

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

[Missmom]

Ok, so it has been a long time, but anything is possible as far as treatment. Are your tics chronic, or do they come and go? Do you remember any period in your life when you were tic free, and for how long? Do your tics get worse when you are sick or immediately after an illness? Do you feel better when taking antibiotics or any type of steroids for illness or anything? I think a everybody has an inner voice telling them what goes on within each of us. If you have doubts about your diagnosis and you feel like there is more to the puzzle, then by all means you should find help. I don't understand why any doctors refuse to run simple lab tests. You may need to seek the help of more than one doctor because they may just content with labeling this touretts and then they are done. Although touretts is just another name for chronic tics. This gives you no help what so ever. I am sure you seek to find out why you have tics and what can be done about it. Several pandas experts have stated that they believe touretts is just undiagnosed and untreated pandas/pans. Do you have any OCD or anxiety? The symptoms of pandas and touretts overlap so much that I think they have to be connected although not all pandas children have tics a lot of children do.

 

What type of medications or supplements have you tried? If I were you I would try to make a detailed timeline of what you can remember. What meds have worked, and which ones made things worse. Have you had any change in tics or symptoms, etc... I would consolidate all of this info and gain as much knowledge of pandas as you can and go to your doctors and request help.

 

I just hope you find the answers you need and hopefully some help. Also, try to remember if you have ever had a tick bite. Consider Lyme.

[Lottie]

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

 

 

 

 

[T_Anna]

It definitely sounds like it could be PANS. Dr. T in NJ does treat adults, not sure how successfully.

Have you ever tried steroids? Antibiotics?

T.Anna

[Lottie]

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

[Missmom]

Sounds like you are in England. Maybe others on this forum from England can offer you some advice about doctors who may be able to help. I really hope you find help. Glad the medicine you are on has given you some relief, but hope you can find something similar with less side effects.

[3bmom]

 

This is a post that Rachel had under Glutamate/GABA. It held a lot of answers for me. It is interesting that it is for Restless Legs.

 

http://www.rlcure.com/glutamate2.html

 

Have you tried diet? Organic, Gluten and Casein free? In London they label GMO food. Do you stay away from this food. They are saturated with Round-UP pesticide. There are wonderful articles on the home page of this forum. I know these pesticides are being implicated in Autism, MS, and Alzheimer. Probably more since they deplete essential minerals in our bodies and destroy gut bacteria leading to Leaky Gut.

 

Have you tried Cognitive Behavior Therapy? CBT can help break patterns when a Tic may be a compulsion. I met a guy who had severe Tics, vocal too. He traveled around to high schools teaching acceptance and was on the TV show "The Doctors". You can Google him. I met him later at my support group and I was amazed because he didn't tic at all. He was working on Thought patterns. You are older and this may be easier for you to address.

 

I also would check infections too and I believe you can get better. Wether old or young it is a process of removing layers of inflammation from a variety of sources, based on your own tapestry so your body can heal itself.

 

Keep us posted and good luck.

[3bmom]

If you are seeing a neurologist sf_mom has tests to check Glutamate. Check under that post.