I am 26 yrs old male .I am located in New Delhi,India, people here have no idea at all about TS.Doctors are also not very helpful on this.I have reading a lot on TS but most of the info is targeted for kids. So here i am in need of help ! Pardon me for the extra long post.
My history -
1998/12 years old - Started with eye blinking.Very mild.Parents thought it as some kind of habit as did other people.Since it was very mild, it never caused trouble at school or anywhere else.Things continued like this for a few years.
Consulted some eye doctors and they tried their luck but they had no idea what it was and made up their on theories.
Somewhere in the air we heard that the problem might be neuro. So consulted 2 neurologists.Had a MRI and EEG.Nothing came up.Was prescribed Neurobion and some other meds for 3-4 days . Thats it. None of them could even tell us what i am experiencing is called a 'tic'.
2004/18yrs - Got into an engg. college. Tics had worsened but were mostly limited to eye blinking - mild to high.But manageable.
2005/19 yrs - Some facial tics also started.Very mild.Consulted an all rounder family physician.At that time we considered him pretty knowledgeable.He asked me to get a DHEA test.The result indicated that DHEA levels were not in range and he prescribed Parotin 20mg (Paroxetine) to be taken daily after breakfast.Situation improved , so we thought it was working.
2005-2009 - Tics were almost similar in cycles and we realized that parotin might not actually be helping. Somedays almost nil sometimes very heavy.But heavy days were very few , maybe 2-4 days max in a month,they included facial tics and sometimes sticking the tongue out. So again everything was going fine. Tried to stop parotin and had withdrawal symptoms so had to start again.
End of Dec 2011/25yrs - I cached cold. Very severe and took over the counter medication.Major lasted for 3 days and had to stay at home. On the 4th day , cold was there but very mild. I had started clearing my throat then and it felt like i had mucus, and i cleared it. Slowly the frequency increased (in a week) and matured into throat grunting.Gradually it increased.Took medication from ENT for throat but it didn't help. Searched online and found out about Tics/Vocal Tics and TS. After some days i realized that all my other motor tics had gone. Went on for a few months like this. Also is it possible that the cold i got was some sort of strep infection which in turn triggered the onset of vocal tics ?
March 2012 - Went to see a neurologist and he prescribed my Haloperidol .25 mg 3 times a day and was gradually increased to 0.5 mg a day. Vocal tics had reduced by max 60%,motor tics were non existent.But still had waxing and waning. Also stopped paroxtin gradually in over a month. Overall i felt good,tiredness was very less and had sound sleep. Was feeling very healthy.
June 2012 - Felt that Haldol has its side effects. I experienced loss of interest in things. So consulted a homeopathic doctor. Was given medicine but was never told what the medicine. The tic cycle went on but somewhat felt that the meds were working. Vocal tics present,motor tics very minimal.
March 2013 - Homeopathy wasn't working and tics were getting even worse. So stopped it.
Aug 2013 - Early august , due to work i got a lot of physical exertion and had long hours to work.This was for 3 days.This exhausted me especially for the tics. Tics got onto a whole new level. Throat grunting became very intense started experiencing tics in upper arms.As days passed The ticing reduced and arm twitching was low. Somedays it was very high.
But yesterday i went through the worst nightmare.
Severe arm jerking in both the arms and could hardly sleep.Situation improved till morning. Throat grunting is always present but the good thing is that it occurs minimally when i am not talking to anyone and sitting/working alone.
I really don' t want to take meds due to side effects but this thing is causing me a lot of trouble.I am hardly able to work. I have also noted that i mostly experience throat grunting when i am speaking. It happens other times as well but not that much.
The neurologists i met last year didn't concluded it as TS.Moreover they don't talk much and just prescribe the meds. They also said that the tics generally go out in adulthood and should go in an year or so. But it has been over a year now with motor as well as vocal tics.
I haven't be able to circle out foods-triggers,except for soda.
What should i do ? Please help.