Worsening Symptoms into Adulthood

[abbypdx]

Hi, I'm new here. I'm a 37 year old woman who was diagnosed with TS at 21. I'd always had what would likely be described at mild to moderate tics (although I think part of that is learning at a young age how to hide/modify). My tics are not large, obvious movements, but at times they come very often (head shaking, tensing of arms, legs, abdomen, tapping toe when running, touching various body parts to other parts, biting lower lip, etc).

There is so much information here about children, it can become frustrating because the thought is that by the time you're an adult this will have all dissipated. That does not seem to be the case for me.

 

Generally, my TS is something I deal with and is very personal (just handling it internally). But for some reason over the past month and a half my tics have worsened. They are mostly the same tics I always have had, but just much more frequent, hard to relax/stay still especially when alone. I've also added a tic that is something I've experienced before but is happening much more often - a sense of not being able to get a 'full breath' and needing to inhale very deeply each time I take a breath. It's extremely annoying!

 

That said, what's strange about all of this is about 6 or so months ago I changed my diet and eliminated just about all processed food. I've always been a fairly healthy eater, but I took out pre packaged veggie burgers/sausage, low fat cheese, etc. I'm only eating organic dairy, meat and veggies. So how on earth are my tics getting WORSE?? Just seems like a cruel twist of fate :-)

 

The only thing that's changed around that time is I switched apartments. I'm now in a very nice basement apartment, but wonder about the lighting/mold, etc. The only thing is these tics happen while I'm at work and out and about, not just when I'm home. I was gone all weekend last week and they persisted the entire time.

 

My ND just did an Igg/Ige test for me and I got the results back yesterday. It was high for all dairy/eggs, bananas, pineapple, white beans and sugar. So I'm going to attempt a dairy free couple of months starting Monday. Even though I had no gluten come up on the tests, my ND says that with many neurological issues, the first step is removing gluten. Although from what I've been reading here, that's only the case for some people (as with all things). I think switching a child's diet is easier than switching a 37 year old's diet and the idea of gluten/dairy/sugar free is downright frightening. I'm going to start with the dairy and see if that helps.

 

Incidentally, she gave me cal/mag yesterday to see if that would help and as far as I can see taking it for a day and a half, the breathing issue has gotten worse. Not sure if there's a correlation. I'm going to not take it for the long weekend and see if it dissipates in which case I will come off of it. I've not experimented with many supplements - it seems so daunting to attempt to try to figure out what cocktail works for me, especially since my tics wax and wane so much naturally.

 

That's my basic story. I guess I am looking for some suggestions from adults who have seen their tics wax and wane and what sorts of things seem to have prompted those situations. I've been eating dairy/eggs my entire life, pretty consistently, so it just seems odd that out of the blue it's having this particularly bad effect on me. Especially when I've switched over to all organic. I do notice that when I eat dairy I get more bloated/gassy. So this will potentially help that as well.

 

Any thoughts/suggestions from anyone would be great. I realize this forum tends to be for parents of children with TS and I applaud you all for your concern for your children. When I was diagnosed at 21 and told my parents, my father said, "Oh yeah, I have tourette's. It hasn't really bothered me since I was an adult. Oh and your grandfather had it. And your aunt has it". I am still baffled as to how they never noticed I was having tics or struggling enough to explain to me that this is what was going on. I guess they just never looked at me that closely :-) So again, thank you all for working so hard with your children to make them healthy at a young age, so they have the tools to carry into adulthood and don't have to spend the years sorting it out on their own.

[Cj60]

Hi,

 

Not an adult with TS, but for what it's worth...

 

- If tics are allergey related, Spring is a good time to notice tic increases.

 

- Magnesium detoxifies, so, while it's not common to hear of elevated tics associated with the recent addition of magnesium as a dietary supplement, there's no reason to think that a little herxing (and thereby elevated ticcing) would not happen in some cases. I'd stick with it for a while. Just make sure you're taking a clean form (no flavors, colors, additives).

 

- The recent move into a potentially moldy living space seems too strong a possible cause to ignore. Did you get allergy tested for inhalents (this is where they would test for molds and pollens, etc.)

 

- I am far from an expert, but my hunch is that an adult whose tics may be caused by dietary or gut related issues may have a longer healing time than children. I think you're doing the right thing by taking care of your diet and identifying offending foods, etc. If diet is an issue for you, some improvements may be noticeable in a short period of time. Others might take a little while. The key is to be aware that if dietary modifications are going to help, you have to stick with them for the long haul if you can.

 

Best of luck

 

Chris

[lismom]

Hi, I'm new here. I'm a 37 year old woman who was diagnosed with TS at 21. I'd always had what would likely be described at mild to moderate tics (although I think part of that is learning at a young age how to hide/modify). My tics are not large, obvious movements, but at times they come very often (head shaking, tensing of arms, legs, abdomen, tapping toe when running, touching various body parts to other parts, biting lower lip, etc).

There is so much information here about children, it can become frustrating because the thought is that by the time you're an adult this will have all dissipated. That does not seem to be the case for me.

 

Generally, my TS is something I deal with and is very personal (just handling it internally). But for some reason over the past month and a half my tics have worsened. They are mostly the same tics I always have had, but just much more frequent, hard to relax/stay still especially when alone. I've also added a tic that is something I've experienced before but is happening much more often - a sense of not being able to get a 'full breath' and needing to inhale very deeply each time I take a breath. It's extremely annoying!

 

That said, what's strange about all of this is about 6 or so months ago I changed my diet and eliminated just about all processed food. I've always been a fairly healthy eater, but I took out pre packaged veggie burgers/sausage, low fat cheese, etc. I'm only eating organic dairy, meat and veggies. So how on earth are my tics getting WORSE?? Just seems like a cruel twist of fate :-)

 

The only thing that's changed around that time is I switched apartments. I'm now in a very nice basement apartment, but wonder about the lighting/mold, etc. The only thing is these tics happen while I'm at work and out and about, not just when I'm home. I was gone all weekend last week and they persisted the entire time.

 

My ND just did an Igg/Ige test for me and I got the results back yesterday. It was high for all dairy/eggs, bananas, pineapple, white beans and sugar. So I'm going to attempt a dairy free couple of months starting Monday. Even though I had no gluten come up on the tests, my ND says that with many neurological issues, the first step is removing gluten. Although from what I've been reading here, that's only the case for some people (as with all things). I think switching a child's diet is easier than switching a 37 year old's diet and the idea of gluten/dairy/sugar free is downright frightening. I'm going to start with the dairy and see if that helps.

 

Incidentally, she gave me cal/mag yesterday to see if that would help and as far as I can see taking it for a day and a half, the breathing issue has gotten worse. Not sure if there's a correlation. I'm going to not take it for the long weekend and see if it dissipates in which case I will come off of it. I've not experimented with many supplements - it seems so daunting to attempt to try to figure out what cocktail works for me, especially since my tics wax and wane so much naturally.

 

That's my basic story. I guess I am looking for some suggestions from adults who have seen their tics wax and wane and what sorts of things seem to have prompted those situations. I've been eating dairy/eggs my entire life, pretty consistently, so it just seems odd that out of the blue it's having this particularly bad effect on me. Especially when I've switched over to all organic. I do notice that when I eat dairy I get more bloated/gassy. So this will potentially help that as well.

 

Any thoughts/suggestions from anyone would be great. I realize this forum tends to be for parents of children with TS and I applaud you all for your concern for your children. When I was diagnosed at 21 and told my parents, my father said, "Oh yeah, I have tourette's. It hasn't really bothered me since I was an adult. Oh and your grandfather had it. And your aunt has it". I am still baffled as to how they never noticed I was having tics or struggling enough to explain to me that this is what was going on. I guess they just never looked at me that closely :-) So again, thank you all for working so hard with your children to make them healthy at a young age, so they have the tools to carry into adulthood and don't have to spend the years sorting it out on their own.

 

 

I'm on the lyme board now but I would suggest these. You may have picked up an infection. possibly mycop. your "air hunger" could be that. maybe get blood work done for this if things dont go back to baseline. Do you ever treat for yeast(candida)? this plays a role sometimes bringing on tics or making them worse. you also went to clean food, organics, maybe this triggered a cleansing herx. also, check your strep titers and could you have ever been exposed to tick infested areas. Babesia has air hunger as a leading symptom. kathy