My wonderful daunghter, and CH....

[tingeling]

Hi

My daughter is soon to be seven. She is the purest most wonderful thing in the world.

And i get so worried....

she had some episodes in the past with HA. She been sitting in her bed upraised, just screaming almost constantly. Her eyes swollen and actually hole head have been looking all swollen. When telling her to lye down and relax, she says i can`t i can`t it hurt so bad, and just continue to scream.

I noticed she get very effected from weather, and sometimes angry without understanding it herself why. she get`very frustrated when this happens.

She complained about a toothache last week. And suddenly i realized, damn, she said this since she could talk, around two times a year. We went to the dentist every time, nothing wrong.....

Last time now, she didn`t have a HA, and it`s around half year since last HA.

This worries me so much, i have no clue what i could do about this. this is horrible, i think she have CH... Or it`s early signs. It`s my fault, i have to fix this the best way i can. I just don`t know how.

Any with experience here? She is seven in Oct.

PFW and a big hug from me

[MattyAA]

Tingelin, you should rush to some pediatrist or good neurologist asap with your daughter and tell him/her of your concerns that your daughter may have Cluster Headaches.

I cannot recommend much, since I am not aware if the meds we take are allowed to children that are still growing and if meds would make some tremendous harm in their growth or organs/etc development, thus I suggest going to pediatrist or neurologist or even both.

Good luck Tingeling and I wish your daughter and you all best!

Please keep us posted.

P.S you could try using the water treatment and hot shower or pack of frozen/heated peas over the area.

Not sure if Oxygen would be good here but that is question to pulmonologist if oxygen would cause no harm to still developing lungs in small child.

[Psiloscribe]

My daughter is soon to be seven. She is the purest most wonderful thing in the world.

Hi Ting,

yes she is!

As Matty said (thank you Matty) you should be very careful about how you proceed and what you put into that pure child of yours.

I know you are very careful and thoughtful in these matters and you will make the right decisions for her.

I would be very careful about using anything to treat her headaches at this point of her development. Yes I would be careful of even using oxygen.

Neurolologically speaking she has pretty much completed physical growth but it continues to make adjustments based upon environmental factors. These are some of the things we can have an effect upon.

That said, you are not responsible for your clusters and you aren't responsible for whatever headache diagnosis she may or may not end up getting.

And since we're all "family" here, we are all responsible for her care.

Some children her age have been diagnosed with clusters.

I have seen some kids go through cycles and have them stop, never to return.

I would get in to see a specialist as Matty suggested, asap.

I would also first try the water treatment. This is a very large increase in the water intake. Even with this though, you (and everyone) needs to be careful. It isnt discussed much but you can drink too much water.

I would try having her drink ice water if she can, during an attack. Personally I think this might be what is behind the "waterX3" treatment. Most think its the increased water that helps. I think it may actually be cooling the vagus nerve by drinking cool/cold water.

When she gets an attack, see if you can get her to do some sort of exercize. Make it fun if you can....maybe running in place with you?? See if she can beat you to the "Dark Side of the Moon" ;-)

Put a frozen bag of peas on the sore "spot" on her head.

I would begin a headache diary. I would not involve her in that. She doesn't need to be looking forward to the next headache.

I would also keep track of whatever symptoms she mentions. I would not suggest any symptoms or ask her if she feels this or that.....She will be the one to best describe when and what she feels.

Tell her that she, as you, has friends all over the world pulling for her.  8-)

Bob

[1961mom]

Wonderful post Bob

I have a 20 year old, Tingeling and know first hand the moment you considered she may be suffering from CH.  This is a mothers worst nightmare. 

Has your daughter witnessed your attacks?

I only ask because this experience (for me as a mom) added a deep psychological impact to my sons childhood.  He's began to share only recently how this affected him, the things he thought of and what it all meant in his world.  Like was he safe?  Was I going to die?  Who would take care of him?  Very Scary stuff to our children.

It's not anyone's fault as Bob said earlier, but it certainly does impact our children in ways other children may not necessarily be impacted.

Let us know as soon as you know.  We are all praying for her!

 

ps

Maybe we should write a childrens book dedicated to acknowledging the experience of what it's like to have a mommy or daddy with such mean and horrible headaches.

xxoo   

[alleyoop]

Check in please Ting!  You've been silent long enough.  :-X :-/

[Dallas Denny]

Check in please Ting!You've been silent long enough

Ditto!!  What is up Siv??

Hugs

Denny

[tingeling]

Hi

I`m sorry......

A person close to me is in a very bad situation. I followed this sit for many years now, we and in the end for long periods, it`s been only me helping out. How strange how people choose to disappear in sit where people need their friends. Makes me sad.

I think the sit now is at top of how bad it can be, i don`t know how well she can do in the future. I tried my best to help out, not much i can do, but i`m the person who can reach her, in a way, as the person she really is. She is most likely Schizophrenic. Psychosis comes and goes, and she`s not alone..... But it`s only the two of them.

It really gets me.... Earlier i tried to get her the help she needed, but with this illness, for long periods the person that`s ill doesn`t want to be helped.

Now i done what i can do, if she doesn`t want to be helped, or if they can help, i don`t know what will happen in the end.

I really can`t do anymore at this point, except from being a supporter. and i can tell, that`s not easy!! To support a person who change from being aggressive and paranoid, to sad and disillusioned, and then a third "person", it`s really a challenge. But i remember what person she really is, that`s enough, maybe she can come back, that person is still in there.

I`m sorry, i just checked in and read a little. I didn`t want to write or answer before i had my head with me.

But, over to my little angel. I do not use anything besides water. When she had a HA, it doesn`t last long. I been waiting for it to come, because it usually would at this time. Nothing yet, hopefully it won`t either....

She haven`t seen me in full attack, i have this hide thing. I go and hide. But before i know it myself, she give me this look. Like she study me, and i know she noticed some sort of change. And that`s strange, because i had this all her life. Now that i`m better, she started to talk a little. she suddenly said how strange it was, why do some get ill all the time, and some don`t. And how come others get well, and some don`t. she hoped she never got ill. Poor girl, so yes she worries. It`s not my fault, but in a way it is, it comes from my genes.

She had some "symptoms". I do not focus on it, i don` talk about it. what is strange, and very good, is that she selects out what she eats. All by herself!! I have never talked to her about food triggers, so i really don`t understand where this comes from. She tells me all of the sudden she can\t eat hot dogs right now, she don`t want sweets, drinks only water etc. Very strange. She`s so sweet, she tells me i want water, ice ice cold, i love water

Maybe this does it all

I talked to doc about it, i`m not taken seriously. Worried mom etc etc. Too early to tell and all that. But i won`t give up if she get more HA, because if she does get it or get CCH as adult, i want this to be reg some place, and not have too much trouble with f ex economy. I worry too much i know, but you all know how this works with documentation of illness and what a struggle it may be sometimes. And most of all, i want her to get the helped in the right way with the condition. I have to make sure she will not suffer the way i did.

I remember one time, she wanted to help me peel shrimps. she stood on a chair and started to sigh and swallow and sigh again. Trying to be brave, but in the end she started to cry. "Mummy, you hurt those shrimps! Why you take their heads off?". She never wanted to eat shrimps again.

I looked at her and got worried. How is this girl gonna manage with heavy pain f ex? Cause she`s still this way. Everything goes straight into her heart, she`s so sensitive. That`s my biggest concern. If she in the future gonna suffer from CH, how can she ever bust?!

I hope for BOL to come.

Thanks so much for answer,support and caring. This place is where she can be helped as well in the future, in diff ways.

Now i gonna try not worry about anything for the weekend. Weather is nice as well.

Wish all of you to enjoy the weekend. We are blessed, we find happiness and sincerity.

I am very grateful to all of you.

Big big hug from me :-*

[Bonkers]

Yo, tingeling dude,

'S'up? Many of us are concerned that you haven't posted lately. For many of us, your pretty much daily posts are one of the things we most look forward to. When you almost-like talk on the telephone with a group of people every day, you invest emotionally in their lives and they in yours, even given the anonymity of an internet forum such as this. You're our first god member and that's not just because you like to write or that you have nothing else to do. You share a common experience with the other folks on this website; an experience unlike any other. A nightmare, actually. A physical pain so severe that it has infected your entire life. What we're doing here is very important and it's very good. You found, by whatever good fortune, a weapon that is effective against this pain way beyond anyone's wildest expectations; a weapon that is giving us the upper hand. That, you also share with the other members. It's like we're all on this wild adventure together; like we're crew members on Columbus' ship or lab partners in a world-class laboratory, homing in on a cure for cancer. You're needed here and you like it here. Everyone I know likes having you here. Everyone is concerned for your welfare. Please let us know that you're okay, or if not, you'd be surprised at how much we could help.

Ron

[Bonkers]

Sorry, I posted the above message a long time after I wrote it but before I noticed that tingeling had responded to everyone's concerns after I started it. I was going to delete it when I saw it but decided that I don't care if she knows how I feel about her. I'm not too old to have schoolboy crushes but I am too old to care if anyone knows about it.

[tingeling]

Thank you Ron, and everybody else for caring. I care for all of you as well, didn`t mean to be unthoughtful. I apologize for that.

I just been very tired, what i just been in, was very draining and time consuming, and it got acute a late evening.

In future, i will make a sound, at least

[Hipshot]

Glad to see you back on the board Ting. Bonkers even had me concerned for you. Nice to have people to care about you...huh?

Best wishes to you and your little angelic daughter.

Dan

[tingeling]

U know, yes it certainly is. And i`m very sorry for this. I`m really not used to people getting concerned because of me. No one ever been concerned about me, and people i have around me are used to that i always manage on my own.

When i came home yesterday, my plan was to answer, but i was so tired i just had to get my head toghether.

I never had this kind of family. I been thinking of this all day, i really hope i will meet you folks.

I love this place, and i love the people that makes this place.

I`m so sorry.... Really learned something from this....

Thanks again, you are all amazing people:)

[alleyoop]

I never had this kind of family. I been thinking of this all day, i really hope i will meet you folks. 

The feeling's mutual Ting.  I can't wait to meet you! 

[kaboom]

Tingeling, my heart hurts for you.  I understand the deep fear of thinking that we may have unknowingly passed on a defect to our children.  I love my girls more than I've ever loved any thing else in my life. 

My girls are ages 16 and 12.  I've protected them as much as possible from seeing me suffer.  I didn't know it at the time, but my oldest saw me with about a level 9 last year.  We were watching tv and I suddenly excused myself so I could go to my room.  Sudden exits are a common thing for me as I've had clusters ever since they were born.  I try to pretend nothing is wrong, but, you are right, they do KNOW.  This was a particularly bad attack and I couldn't handle being confined to my bedroom so I went outside to dance.  After 20 minutes of pacing barefoot in the rain and mud with an 02 bottle, praying, screaming, cussing, begging, crying, pulling out my hair, and clutching my eye it finally ended.  I snuck back into my room, pulled myself back together the best I could, and then joined my girls again watching tv as if nothing had happened.  That evening, my oldest daughter confronted me.  She had watched me through the blinds when I had my attack.  She felt horrified and helpless but she did not regret what she saw.  She's now my biggest supporter - my sitter when I dose.  My youngest hasn't seen as much, or know exactly what I take for a treatment - I've just told her it's an experimental medicine that makes me loopy.  She's my other sitter. 

During one of my recent "breakdowns" - I sobbed uncontrollably while expressing to them that I would never forgive myself if I passed this curse on to them.  I literally pray to God and beg him to spare my children from this.  They sat beside me, looked me the eye, held my hand and lovingly told me that never, ever should I feel that way because it is not my fault.  Deep inside, I know that, but it warmed my heart heart to hear them say it.  My girls are my heroes. 

 

I hope you find a doctor to help your daughter.  My oldest started having severe headaches at age 5 - crying, screaming, anger, throwing up, no sleep. They did an MRI and it came back okay.  She has frequent migraines which are aggravated by allergies and barometric pressure changes.  I hate that I cannot take them away. But I can help her cope, just like she helps me cope.  For me, part of coping is trying to see something positive in every situation I experience.  Whether it's clusters and/or migraines, our pain has led us to discover our inner strength, develop empathy, and become very grateful. 

[tingeling]

I would see this dancing as well. Another version of dancing in the rain, or what? LOL ;D

Your right. I do what i can to stay as healthy as possible, so i will be able to care for her the best way, learn her how to cope. If necessary.

And pray for BOL to be legal.

Thank you

[Hipshot]

After 20 minutes of pacing barefoot in the rain and mud with an 02 bottle, praying, screaming, cussing, begging, crying, pulling out my hair, and clutching my eye it finally ended.

Kaboom,

You have a way with words kinda like Tingling does. You two need to be on the 60 Minutes program that I hope will happen someday soon.

[1961mom]

Wow Kaboom!  Even though I've lived the cluster headache parallel life with pretty much the same experience (insert son, not daughters.  Insert balcony not street.  Insert video games not movies!) it's still very moving and emotional to read. 

Your daughters are also angels.  I think we all have some pretty terrific off-spring!  In a way they develop a keener sense of empathy for all human beings, I would think.  I know my son is genuine in his empathy.  His room mates have all taken me aside when he's not aware to say that he has told them in great detail about my headaches, how I treat them and what the attacks entail.  I am always moved to practically tears!

He is my AWARENESS BILLBOARD on campus!

And like you kaboom, my bestest of the best sitter!

[tingeling]

How, or did, pregnancy affect CH? iu understand you both had CH before pregnancy? Are you CCH, or ECH?

[kaboom]

He is my AWARENESS BILLBOARD on campus!

I love it!  You know, sometimes we have to look for reasons to smile.  My girls have yet to master the skill of blowing people off when they tell stories of migraines "just like your Mom" and how they cure them with Excederine and a nap.    They are soooooo defensive!  I swear one of these days they are going to scrap it out and floor someone over this!  I'm trying to teach them patience, but it does make me smile knowing they are in my corner. 

My oldest daughter, sidekick, just joined this site last night.  Seeing her put her feelings and thoughts into writing for the public to see was touching.  As a parent w CH's, I sometimes feel like such a failure over the events I've missed or had to leave early from, asking them to help me pack my head in ice, bring me my 02 tank, etc..  But, after reading her post, I feel differently - I'm trying to see things from her side.   

1961mom, your son sounds like a remarkable young man.  Hopefully, we will all get to meet each other some day!    

[kaboom]

How, or did, pregnancy affect CH? iu understand you both had CH before pregnancy? Are you CCH, or ECH?

At age 19, I began having what I used to describe as a "brain freeze" headache - like when you drink a slushie too fast (Dumb and Dumber movie).  It only happened occasionally and only in the a.m..  It would wake me up from my sleep and go away after I got up and started moving around/coffee.  Everything changed after the birth of my first daughter.  The headaches began to hit me several times per day when she was three days old.  I had an epidural and always associated their onset with that.  I was not diagnosed (what, I'm not an over 40yr old male with ruddy skin and a heavy smoker/drinker?).  I had them off and on for a while then had break.   After the birth of my second daughter they started again (epidural).   I had a great neurologist, but didn't get diagnosed until I brought him info I found on clusterheadaches.com since my cluster pain/symptoms were morphing with migraines and tension headaches.  Ch's stayed episodic for about 3 more years then turned chronic. I've been chronic for a little over 8 years. 

Interestingly, I never had even one CH during pregnancy. 

[alleyoop]

Interestingly, I never had even one CH during pregnancy.

That is interesting kaboom!  And I seem to remember another mom making the same statement.  :-?

[raquelinkansas]

Ting, this is stressful, huh?  I have seen my lil girl throw up from a headache, I tend to do the same thing when I hit a 9 or 10, scared the hell out of me.  She was around that age, 7, when it happened.  I hope it was a migraine, anything but a cluster!  As far as pregancy, I started a cycle when I was 9 months pregnant and for some reason, it didnt last long, shortest cycle I ever had, maybe like two weeks.  I dont remember having any more CH's after she was delivered via c-section. 

[kaboom]

Sidekickkk is sitting next to me and just read my post about no CH while prego.  She said, "Hey, maybe you should get pregnant!".  Noooooooooo!  I definitely don't think that's the answer.  I like seeing my feet!

[1961mom]

Ting, I like that raquelinkansas!  So sweet just like tingeling!

My pregnancy was CH free (thank God).  Episodic days during that period of time (20 years ago, tomorrow!)  Just celebrated my sons bday tonight!  Thinking back and retelling the birth story is sort of a bday tradition for us.  Where we lived, what I did the night before (long, long hike in the neighborhood he just moved into with his college roomies!!!  very cool that this thread is going now) My first cycle after my son was born came 16 months later and it was HELL.  During the 80's I would go to the ER for the really bad 9-10's, but didn't seem to live in FEAR of another.  I honestly did not pay attention to the "timing" or "pattern" aspect even though there was a pattern in retrospect.

I called them "eye-aches" and got pretty uppity if someone called it a headache!

After Luke came, my memory of the cycles increases and I think its directly related to the prescription medications that I started taking believing by taking what the good doctor gave me would make this go away faster but really it was like they were prolonged and more painful.  Does that make sense......

When I was 15 and having an attack, my mom gave me a tylenol about 10 minutes before this one particular attack was already scheduled to end.  I thought it was the tylenol that ended the attack (just an association).  I therefore refused advil saying nothing works except tylonel during that first cycle.  That cracks me up now!

For the next 15 years I was employed but uninsured.  It took me longer to pay off the damn neurologist than a cycle would last.  I know I had some bad attacks during these years (not entire cycles tho), it's just interesting to me now that I don't remember them as clearly as the bad cycles after Luke was born.  It's like it went from just one or two really bad attacks (pre pregnancy) to 4 or 5 months of a horrible cycle (post pregnancy)!!!

I don't associate it with the actual pregnancy though, I associated it with the new life I was responsible for.  I think I realized my son was dependent upon me being well and toughing it out for a few weeks wasn't an option anymore.  Not now that I had health insurance and so I went regularly to the neurologist, filled my lithium prescription, my prednisone prescription and my maxalt, sansert, ergotomine, cafergot, etc!  Thinking (like the tylenol) this would help.

They got worse, the attacks were longer, more severe, the duration of the cycle seemed to go on & on & on......

I've recently started to put this whole thing into perspective and it makes me sad....it makes me sad because I believe that the medical professionals really do think they are helping our condition at the moment they are prescribing these meds to us.  That's sad, isn't it?

I think so.

That's why I shared with my neuro about mushrooms! 

So happy to just share......with you, with my neuro, with anyone who will listen!

hugs

[tingeling]

Thank you ladies

I was a CCH over night. Right after birth. I was not given any meds during birth so i think it had to be the hormonal changes. Or i don`t know.

But since i never had longer breaks, i don`t know about pregnancy. I can`t risk 9 months with 9 attacks a day... I have a child, she has to be taken care of the right way during that time. But guess it will be exiting this time, to see how long i stay out of cycle