Help me not panic. :(

[Denisemomof4]

Dd and I are very tired today. We got home after 1:00 because we saw Kid Rock and........ Anyway, please DO NOT comment about that here as this post is not about that. Inside it was obviously very loud. Dd is prone to migraines and although she hasn't had many, as hormones are rushing around, she is starting to feel more headache/migraine/aura symptoms. :(. Because of the loud atmosphere and the very late night, she started to get a migraine. I REALLY should have had her drink a ton of water while waiting to get in, but I feared a bathroom trip before doors opened. Anyway, she did grt advil around 11:00.

 

She is obviously very tired today. You know how sometimes when kids are tired their eyes are kind of heavy/droopy? All of a sudden I noticed that one eye is lower than the other. And it looks a little lopsided. I am totally trying not to panic internally. I can clearly see more space beneath that brow. The eye is off. I pulled out some older pictures of her and it was not like that in the few I saw. I am trying to rush out because she has a class at 11:30 so will look for more pics later. She notices it.

 

Maybe I'm just tired but I can barely hold back tears. What could cause this? Wouldn't we have noticed this before? Who should we see about this, an opthamologist?

[Impish]

I'd think it was more of a neurologist situation than anything else. Migraines, nerves, etc. Def neurologist territory.

:grouphug::grouphug::grouphug::grouphug:

[kitten18]

I'd think it was more of a neurologist situation than anything else. Migraines, nerves, etc. Def neurologist territory.

:grouphug::grouphug::grouphug::grouphug:

I agree completely! :grouphug:

[Scarlett]

Dd and I are very tired today. We got home after 1:00 because we saw Kid Rock and........ Anyway, please DO NOT comment about that here as this post is not about that. Inside it was obviously very loud. Dd is prone to migraines and although she hasn't had many, as hormones are rushing around, she is starting to feel more headache/migraine/aura symptoms. :(. Because of the loud atmosphere and the very late night, she started to get a migraine. I REALLY should have had her drink a ton of water while waiting to get in, but I feared a bathroom trip before doors opened. Anyway, she did grt advil around 11:00.

 

She is obviously very tired today. You know how sometimes when kids are tired their eyes are kind of heavy/droopy? All of a sudden I noticed that one eye is lower than the other. And it looks a little lopsided. I am totally trying not to panic internally. I can clearly see more space beneath that brow. The eye is off. I pulled out some older pictures of her and it was not like that in the few I saw. I am trying to rush out because she has a class at 11:30 so will look for more pics later. She notices it.

 

Maybe I'm just tired but I can barely hold back tears. What could cause this? Wouldn't we have noticed this before? Who should we see about this, an opthamologist?

 

:grouphug: I would not panic at this point....just watch her for a day and see if SHE notices....and if it doesn't go away on its own, take her to the doctor.

[Chris in VA]

Agreeing with the others. :grouphug::grouphug:

[Perry]

I would definitely have her see her doctor, however...

 

Some people with migraines have Horner syndrome

 

Horner syndrome (ie, relative miosis with 1-2 mm of ptosis on the same side as the headache)

Miosis is constriction of the pupil (smaller than the other side)

Ptosis is a drooping eyelid

 

So it could certainly be from her migraine.

 

:grouphug::grouphug::grouphug:

Edited November 6, 2012 by Perry

[TranquilMind]

:grouphug: I would not panic at this point....just watch her for a day and see if SHE notices....and if it doesn't go away on its own, take her to the doctor.

 

Definitely take her in if not gone tomorrow.

[Perry]

 

Some people with migraines have Horner syndrome

Here's an example:

 

[Georgiana Daniels]

No advice, just :grouphug:. Worrying over our kids is the hardest thing. It's one thing when something happens to us, but our babies is something else.

[Spryte]

:grouphug:

 

Is this the DD with Lyme?

[justLisa]

I'm sorry Denise.....agreed though wtih the others. Watch today, and call tomorrow if she is in the same condition.

[SonshineLearner]

So sorry :( Don't know if it'd help with the migraines, but I take a pinch of sea salt with my water to get my electrolytes balanced. When I was getting headaches, and if I start to have them again, it really helps. :) Sorry... Kids just continually worry us, don't they? :(

[cajunrose]

I had a severe migraine a couple of weeks ago...it was on the left side of my face and lasted days. I finally went in and got 2 pain shots and Tylenol 3. My left eyelid was funny looking too and not like the other..it was almost like the left side of my face was paralyzed. Strange. I'm 100% fine now though.

[TravelingChris]

:iagree: with others. I think it is the migraine. Take her in if not gone by tomorrow.

[blessed3x]

:grouphug:

 

Is this the DD with Lyme?

 

This was my first thought. I believe Lyme can have these symptoms.

I agree with the others though. Take her in if it is not better by tomorrow.

 

:grouphug:

[Denisemomof4]

:grouphug:

 

Is this the DD with Lyme?

 

Yes. Does that make a difference? I think I will call her LLD.

[Denisemomof4]

I had a severe migraine a couple of weeks ago...it was on the left side of my face and lasted days. I finally went in and got 2 pain shots and Tylenol 3. My left eyelid was funny looking too and not like the other..it was almost like the left side of my face was paralyzed. Strange. I'm 100% fine now though.

 

Scary, but thanks! I'm hoping this is mograine related.

 

Ok..... Now I'm a little more worried. It is that eye that is hurting her, but the other does also, though not as much.

 

Waiting for a call from the LLD.

[texasmama]

I'd think it was more of a neurologist situation than anything else. Migraines, nerves, etc. Def neurologist territory.

:grouphug::grouphug::grouphug::grouphug:

 

:iagree: When I am tired, one eye droops. I also have migraines.

[Lizzie in Ma]

I'd call her LLMD Denise.

And, for the record, I adore Kid Rock.:D

[Denisemomof4]

I would definitely have her see her doctor, however...

 

Some people with migraines have Horner syndrome

 

Miosis is constriction of the pupil (smaller than the other side)

Ptosis is a drooping eyelid

 

So it could certainly be from her migraine.

 

:grouphug::grouphug::grouphug:

 

I really, really think this is what is going on. The triggers, all of which are migraine AND vasovagal triggers, are LOUD noise, bright flashing lights (both from concert, and all the patriotic noise during the speech was as bad or worse), dehydration, extreme fatigue.

 

Dd is SO out of character that I stopped at home to drop her off before I vote :D I told her she should rest, which is true, but I am also tired and she is just acting a little too crazy for even me today! While she has a migraine, it is on the milder side, but she's been fighting it since last night.

 

Still waiting for a call from LLD.

[Denisemomof4]

:iagree: When I am tired, one eye droops. I also have migraines.

 

Really? Does it just go back after a good night's sleep? Or when the migraine goes away?

 

I'd call her LLMD Denise.

And, for the record, I adore Kid Rock.:D

 

:thumbup: ds20 was a little horrified that I went and he found it necessary to remind me that I have four kids. I didn't realize some of his music can be really raunchy but I *LOVED* his voice and the songs he sang. I also wanted to see the presidential candidate, so my son somehow felt better that I was going for that, too, and not just to see KR. :lol::lol::lol:He was mad when he learned of the free Aerosmith concert. I wish I knew about it Sunday as I definitely would have brought my girls!!!

 

 

Still waiting for the LLMD to call so I can go vote!

[Parrothead]

I'm thinking lots of rest, fluids, more rest and the migraine going away before taking any other action. :grouphug:

[Denisemomof4]

I'm thinking lots of rest, fluids, more rest and the migraine going away before taking any other action. :grouphug:

 

I was so sleep deprived that it never occurred to me it could be migraine related. I came to the Hive first. :001_smile: She will be resting and hydrating for two days. Mom's orders.;)

 

ETA: please send me an update. I have been wondering how things are going with you all.

[curlylocks]

I really, really think this is what is going on. The triggers, all of which are migraine AND vasovagal triggers, are LOUD noise, bright flashing lights (both from concert, and all the patriotic noise during the speech was as bad or worse), dehydration, extreme fatigue.

 

 

OK -- so I have to ask: you knew your daughter had these reactions to noise and lights and you took her anyway? :001_huh:

[Denisemomof4]

OK -- so I have to ask: you knew your daughter had these reactions to noise and lights and you took her anyway? :001_huh:

 

Doesn't always happen. I didn'tt know they were going to be beaming laser lights. I knew the concert would be loud, but why this is the first time it actually triggered her I can't explain. She's been to NUMEROUS concerts and broadway plays.

 

But if you want to blame me, you go ahead.

 

It was a wonderful opportunity for her and we will likely go again the next election.

 

ETA: and fatigue..... Mitt was supposed to start talking at 9:30 but it was well after 11:30 before he did. I could do nothing about that.

[curlylocks]

Doesn't always happen. I didn'tt know they were going to be beaming laser lights. I knew the concert would be loud, but why this is the first time it actually triggered her I can't explain. She's been to NUMEROUS concerts and broadway plays.

 

But if you want to blame me, you go ahead.

 

It was a wonderful opportunity for her and we will likely go again the next election.

 

It isn't about blame -- I was just curious. My daughter has similar reactions and we avoid triggers like the plague. (her request NOT my mandate ;))

[Denisemomof4]

It isn't about blame -- I was just curious. My daughter has similar reactions and we avoid triggers like the plague. (her request NOT my mandate ;))

 

Like I said, she has been to numerous concerts and Broadway productions without issue. But put her in a smaller environment with loud noise, trigger. Flourescent lights and loud noise, trigger. We have not dealt with laser beam lights. We now know that is a trigger.

 

We are going to have to figure things out. It's all different now that hormones are in the picture. It will be changing things but I don't know how yet. We will learn by trial and error.

 

I think an advil before something like that will go a long way, but we will have to figure all of this out. I also will see if there are certain glasses which will help.

[Tammyla]

No advice, but I hope she's okay.

[kitten18]

Doesn't always happen. I didn'tt know they were going to be beaming laser lights. I knew the concert would be loud, but why this is the first time it actually triggered her I can't explain. She's been to NUMEROUS concerts and broadway plays.

 

But if you want to blame me, you go ahead.

 

It was a wonderful opportunity for her and we will likely go again the next election.

 

My sister has had migraines for nearly 30 years and she still doesn't always know what will trigger a migraine.:grouphug:

[Spryte]

Glad you called her LLMD.

 

Of course, you probably know that Bell's Palsy is a common symptom of Lyme, so there's that.

 

Additionally, I had many similar experiences while in Lyme treatment, and can name several other friends who experienced similar. I would not ignore it, and would run it past the LLMD, but my guess is either herx, overexertion, the triggers you mentioned, etc... Or a combo of the above. One thing about treating Lyme is that odd symptoms, or old symptoms, can pop up again here and there.

 

Rest, fluids, detox... And continued Lyme treatment.

 

I can't remember if she has co-infections she's treating, too?

[Denisemomof4]

Glad you called her LLMD.

 

Of course, you probably know that Bell's Palsy is a common symptom of Lyme, so there's that.

 

Additionally, I had many similar experiences while in Lyme treatment, and can name several other friends who experienced similar. I would not ignore it, and would run it past the LLMD, but my guess is either herx, overexertion, the triggers you mentioned, etc... Or a combo of the above. One thing about treating Lyme is that odd symptoms, or old symptoms, can pop up again here and there.

 

Rest, fluids, detox... And continued Lyme treatment.

 

I can't remember if she has co-infections she's treating, too?

 

Two docs were certain she had co-infections. She tested negative for everything so we're just treating the Lymes.

 

I did not know about the BP being a symptom of Lymes. And I'm not too happy that the doc hasn't called yet, left for the day hours ago. I was told she'd get right back to me. If it weren't for you all here, I'd be a wreck.

[texasmama]

Really? Does it just go back after a good night's sleep? Or when the migraine goes away?

 

It must because I have not noticed it in the morning after a good night's sleep. Dehydration is linked to migraines, according to some of my reading. I drink a huge glass of water every morning prior to drinking my coffee to make sure I start the day well-hydrated. I also drink a lot of water during the day. Flashing lights are a trigger for me, too.

[Spryte]

Two docs were certain she had co-infections. She tested negative for everything so we're just treating the Lymes.

 

I did not know about the BP being a symptom of Lymes. And I'm not too happy that the doc hasn't called yet, left for the day hours ago. I was told she'd get right back to me. If it weren't for you all here, I'd be a wreck.

 

Co-infection testing can be tricky, just like Lyme testing.

 

I mentioned your DD to DH - he was my rock through treatment, and is very intuitive about Lyme issues (my LLMD adores him :) )... He mentioned something I did not, in my earlier post (or if I did, I did not elaborate)... If she has active infection, then the fatigue and excitement of the night probably knocked her immune system down a bit. So whatever work her immune system was doing to keep the active infection in check, it has taken a hit, and is not working as well. So this might be what my LLMD would call a flare of symptoms, rather than, say, a herx.

 

Have you read The Complexities of Lyme Disease: A Microbiology Tutorial by Tom Grier? I highly recommend it. It is posted on various sites, I just googled for a copy for you - you may find other sources.

 

You might also consider downloading Dr B's Lyme Diagnosis and Guidelines from ILADS. There will be a comprehensive symptom list somewhere in that document.

 

Lots of water, lots of fluids, extra rest. Keep up with that detox. If she takes something like Thorne's Basic Detox Nutrients, this might be a good time to make sure she doesn't skimp on her regular dose. :grouphug:

 

When you speak to the LLMD, don't hesitate to ask how to manage symptoms... I needed options to get through treatment (migraine meds, etc) that I would not have needed otherwise.

 

 

 

ETA: The Grier article is older, but he does a great job explaining what the spirochete does and how it works in the body. There is more recent info, obviously, which would be good to read, but this is a good one, too.

Edited November 7, 2012 by Spryte

[Denisemomof4]

Co-infection testing can be tricky, just like Lyme testing.

 

I mentioned your DD to DH - he was my rock through treatment, and is very intuitive about Lyme issues (my LLMD adores him :) )... He mentioned something I did not, in my earlier post (or if I did, I did not elaborate)... If she has active infection, then the fatigue and excitement of the night probably knocked her immune system down a bit. So whatever work her immune system was doing to keep the active infection in check, it has taken a hit, and is not working as well. So this might be what my LLMD would call a flare of symptoms, rather than, say, a herx.

 

Have you read The Complexities of Lyme Disease: A Microbiology Tutorial by Tom Grier? I highly recommend it. It is posted on various sites, I just googled for a copy for you - you may find other sources.

 

You might also consider downloading Dr B's Lyme Diagnosis and Guidelines from ILADS. There will be a comprehensive symptom list somewhere in that document.

 

Lots of water, lots of fluids, extra rest. Keep up with that detox. If she takes something like Thorne's Basic Detox Nutrients, this might be a good time to make sure she doesn't skimp on her regular dose. :grouphug:

 

When you speak to the LLMD, don't hesitate to ask how to manage symptoms... I needed options to get through treatment (migraine meds, etc) that I would not have needed otherwise.

 

 

 

ETA: The Grier article is older, but he does a great job explaining what the spirochete does and how it works in the body. There is more recent info, obviously, which would be good to read, but this is a good one, too.

 

thank you so, so much. I feel so bad. I did not know the evening could have caused this in her. I knew this was not a typical migraine reaction, but I couldn't decipher why.

 

The doctor finally called back. As you know, this is pretty common. She said it can last awhile and it can get worse. Dd also was having pain while urinating and now is having pelvic pain, as well as muscle pain. I knew the muscle pain was due to Lymes, but the doctor also feels the other pains are as well.

 

So, I honestly am a little upset right now. (understatement) I wish I had known excitement could cause a setback. I feel horrible. I am also so upset because I thought we were the lucky ones because she's not really affected by the meds. I really thought nausea and other GI issues would wreak havoc but she has done well. So I made plans to take her to DC to celebrate her 13th birthday after Hurricane Sandy thwarted our original plans (trust me, I know we are the lucky ones here. We have friends in NJ who lost everything) She is so excited. And she is also supposed to have a sleepover Friday and now I get to tell her that also won't happen. I do know in the scheme of things these are minor, but I feel awful. AWFUL.

 

I did not read the book/link you mentioned. After I feel a little more refreshed, and a little less emotional, I will look into them. I am fried right now.

 

Again, thank you so much.

[Denisemomof4]

ok, and the doctor thinks dd stumbled upon a tick NEST. She pulled 10 ticks off her person last Saturday, and 6 - 8 more on Sunday. None were embedded that we know of.

 

I wish dh's job didn't keep us tied down to NH. I would move to Alaska in a heartbeat.

[Spryte]

So, I honestly am a little upset right now. (understatement) I wish I had known excitement could cause a setback. I feel horrible. I am also so upset because I thought we were the lucky ones because she's not really affected by the meds. I really thought nausea and other GI issues would wreak havoc but she has done well. So I made plans to take her to DC to celebrate her 13th birthday after Hurricane Sandy thwarted our original plans (trust me, I know we are the lucky ones here. We have friends in NJ who lost everything) She is so excited. And she is also supposed to have a sleepover Friday and now I get to tell her that also won't happen. I do know in the scheme of things these are minor, but I feel awful. AWFUL.

 

Please, please go easy on yourself. Personally, I thought taking your daughter for a fun night was a great idea. She probably needed the fun, and a break from everything else. We can't predict the way people will react every time. Your DD's body is changing, her body chemistry is changing, and her reactions will change. Just take it day by day, and do your best, making the best choices you can each day. You did that, and that's the best you can do. It's okay.

 

Sometimes we have to balance managing the illness with leading a normal life, or with having life experiences. My LLMD was - and still is - big on maintaining quality of life while in treatment. I bet your DD is still glad she went!

 

Maybe you can ask the LLMD about preparing for events - like the DC trip or concerts, etc - that might throw your DD into situations with her triggers. See what LLMD says - should you put stuff like that on hold for now, or go ahead and do it, knowing that there may be a cost? There could be some things you could do to support her body, and minimize any ill effects, like increased inflammation, etc. My LLMD often worked with me when we planned vacations, etc, but that was after I'd been in treatment a while. ...And then discuss with your DD that she might feel some effects, and see if DD thinks it's worth it. Is she capable of thinking through how she'll feel afterward?

 

I guess I'm trying to say you don't have to be the bad guy who locks her up in the house, not a jailer... More like a gentle helper, who helps her make good choices and supports her body with good food, lots of rest, the right supplements, the right meds, and good guidance... Although that goal with a teen might be hard to reach! ...If she's in a good state, with no flare ups, a sleepover might be great. It could be good for her soul, and that's good for her healing, too. If she's sick this week, a sleepover might not be a great idea, but it doesn't mean that it won't work the following weekend... If you take it day by day... She'll still have hope. She needs that. So do you.

 

:grouphug::grouphug:

 

Ooooh, and a nest of ticks! Aaack! At least she's in treatment. Are you opposed to Buzz Off clothes? We use them. I don't like to buy the permethrin spray, as I don't want to handle it wet, or risk getting it on skin. But I feel ok about the dried product, and the treatment on Buzz Off clothes lasts longer through the wash.

 

I'm right there with you on moving to Alaska. :tongue_smilie:

[Denisemomof4]

Thank you so much. :grouphug::grouphug::grouphug:

 

There will be no sleep over this week, and we had a tear filled talk about DC. she still wants to go so I told her we have to make sure she is getting proper rest while there. It will be three days of on the go, but hopefullt she will sleep well at night. And we have to research food options.

 

Dd is seeing one of the best LLMD in the state yet she is not on any supportive supplements. She isn't even on a special diet but I am having her eat mostly a Candida diet. I need to research detox diets and detoxing. I had months ago before she started treatment. I also want to consider, again, Dr. Xiang's protocol combined with her antibiotic treatment.

 

I started to read your link this morning but need to read it when I am feeling a little more rested.

 

I don't know that I can get dd to wear the Buzz Off clothing whike hiking, but it is a GREAT idea for when we are at home. We had plans to tackle the 40 hivhest mountains in New England but now I feel nervous about it! The ticks in our yard alone this year were terrifying. I want to get some guinea hens to gobble them up.

 

How are you feeling now? How long did your treatment last?