Rant and Vent!!! I'm ready to blow!

Hi Guys and Dolls-

As many of you know, my daughter Crystal pictured here (awe) ---> Has had a non-stop M since March ranging from a7/10 to 9/10 daily and occasionally spiking to a 10 . She has severe nausea that goes along with this to the point that I can barely get the little twig to eat and when I can it is Cheerios, noodles, or rice or something sweet. She never eats anything with nutritional value and her already skinniness is shrinking about 2 pounds a month. For me this would be a dream, but since she is 110lbs and 5'3'' she will be alarmingly thin in no time flat if this keeps up . She also has visual issues along with eye pain and light sensativity and she can't read things on paper any more . Oh yeah, and she can't sleep .

She is not in school and recently began getting tutored at home which was at least a little progress with her education for the former honor roll student that participated in EVERYTHING that the school or anywhere else had to offer. No drugs touch her pain, and many give her less than desirable side effects. Many of the drugs have on the label that people become suicidal on the information sheets (How interesting is that for a kid that is isolated, never leaves the house, has a rediculous amount of drugs around, and has a single mom that is at work all day?), and certain drugs tried have caused her to get ambulanced to the hospital for heart trouble related to the rapid heart rate produced by these drugs.

She just started seeing a new neuro (Thanks Annas Mom) who thinks that there is a good chance that Crystal has Intracranial Hypertension and has started treating her for it just to be safe. However..she just flipped her lid and now I have to fight with her for every dose becxause she is sooo sick of all of the drugs and everything that we have tried not working.

Yesterday when I was at work I could not reach her. I was calling and texting with no response, so I started thinking the worst and left work crying and totally lost it. of course when i got home she was fine. I know that she is in pain, but I am beginning to think that she hates me.

She used to be this happy singing , guitar playing, acting, dancing, fun, sweet, cuddly kid and she is really getting depressed whether she wants to admit it or not. Thank you all for listening..sorry to sound depressing.

She (and you) sounds like she is really suffering. I just thought I'd share my high calorie eating tip that I used when I lost a LOT of weight on topiramate (5'10" and went down to about 103lb). Anyway, I managed to slow it a bit and gain back after I stopped it by always having a bag of dried fruit and nuts with me and snacking constantly. To keep costs down I bought huge wholesale size bags of all the ones I liked - cashews, brazil nuts, dried apricots, raisins, almonds etc - and mixed up lots of little bags in one big batch, with a bit of everything in for variety. Full of nutrients, high calorie and very portable.

I also used to eat a lot of ice cream for snacks! I did try and eat healthily, but when you really need to gain weight the key is to increase the blood sugar levels to the point that the excess is stored and converted to fat.

I hope your new neuro has some answers for you both.

Take care

Amy

Thanks for the tip! I will try the dried fruit for sure. She will not touch nuts to save her life. I keep frozen fruit in the house all of the time and she will grab it on occasion if the nausea goes down a little. I appreciate the advise!

I just wanted to say I was thinking of you. I do feel for you and your daughter. My daughter doesn't get migraines but has other health issues and gets depressed sometimes and I so know that awful feeling you talk about when you can't get hold of them.

I'm sure she doesn't hate you, you're just the nearest to her so the one she'll take it out on. It doesn't help at the time but at least you can reason with yourself.

I do hope the new meds start helping soon, all the best to you both.

Liz

Hi,

I had my first migraine at age 12, but they became chronic at age 17, now 29. I was first diagnosed with chronic intractable migraine, now known as New Daily Persistent Headache.

It sounds like your daughter is having a really rough time right now. I know how she feels. I used to feel the same way- I would get really tired of being told "this will help you", only to find out that it did nothing. Finally, one doctor simply said "This medications will work for 90% of my migraine patients. Unfortunately, you fall into the other ten percent." I know that sounds blunt, but it helped me understand why some of the stuff wasn't working. I was simply different. It is hard when nothing seems to help. Right now, I basically stick with the few preventatives that have helped over the years.

Is she taking anything to address the pain? I think that might help some. I saw one neuro who did not believe in pain medications, except Anaprox, and that was rough. I was glad to get some relief when I switched doctors. It certainly sounds like pain control is a huge issue that needs to be addressed somehow.

I do not think she hates you. I think she is just incredibly frustrated by the situation and doesn't know what to do, or why this is happening to her. It is scary and extremely frustrating. Sometimes, I have found that I take out that frustration on my parents or on other close friends. I wish I could tell her it wil get better. Something will work. Never give up.

I wish I knew how to get her to eat. Right now, I think going with what she feels like she can eat is good. Ice cream is also good. I have found that ginger sometimes helps me-especially ginger beer or crystallized ginger. (It has to have real ginger in it though.)

I also know that changing school routines is difficult. I am glad she is able to get some tutoring at home. I had to leave boarding school and return home during the middle of my senior year due to migraine. It was difficult. Can she listen to information-books on tape-maybe?

Also, have you shown her this page? It might help for her to know that she is not alone in this fight. I discovered it shortly after my migraines became chronic and it has been a Godsend for me.

I hope this information helps.

Pain free days,
sailingm

Oh, I'm so sorry. Not much to offer in the way of advice, but have much empathy to send your way.

I have struggles with my son, BUT, he is not in pain or suffering. It has to be so difficult to sit by and watch.

My thoughts are with you.

Charlotte

I hope it was a great appointment! I'm sorry it is so tough for you and Crystal. You know I understand, I care, and I support you both in this great battle! May the good doctor be able to help get it all better. Keep the faith!

Cheryl

Thank you so much to everyone for your words of support. Crystal has tried so many different solutions for painand none do anything...not even slightly. The new neuro that we just started seeing was compasionate enough to perscribe her Darvocet for rescue situations.

I had her take the first one last night while I was at home just to make sure that she would not have a scary reaction to a new drug with no adult supervision while I am at work. She had no reaction ...not in a bad way, but not in a good way either. No pain relief what so ever.

I did just get off of the phone with her new doctor and he is diagnosing crystal with Inracranial Hypertension. (Thanks Cheryl for Dr Wilken)

It makes me feel really good to know I have helped you and your beloved Crystal. I hope we can meet some day

Cheryl

I'm so sorry..

I wish I had more to say. I have my baby and I couldn't imagine watching her go through this pain
we have. I hope all the time that she doesn't get it as she gets older. I'm so sorry that your
daughter has to suffer like this and I really hope you both find some answers soon..
I'm thinking of you and Crystal.

Hi,

I'm glad that her new doctor seems to be on the ball. I'm so sorry that the darvocet didn't work- I hope that you find something that will work for the pain soon. I hope the new dr can help with that. I hope that treating the ICP helps.

Pain free days for both of you,
sailingm

Please be reassured that it is not you she hates OR is even frustrated with in those moments. It's this awful awful endless battle for our painfree lives back.... Following hopeful doctors only to feel WORSE half the time!!! It's a gigantic wound that no one can see or fix yet it distroys a little of almost every part of us when it is at it's worst.

It is probably so hard for you as a mom to watch helplessly, and she must crave the little girl she used to be as much if not more than you do! Be her strength in keeping the two if you on the same team in this fight! Because of her age she may resist that at times, but though and through she needs you. And you are SO invested in her... I can feel that, so I know she must know that.

It is equally as important to take care of YOU! Being a caretaker can be harder than being the patient sometimes!! Take time for yourself and have support! I'm super glad your a part of us
here!! I wish there was more I could say or do, but I don't have my own hope or promise for better days right now, so I can't promise that for Crystal. But.... After that first year, for me, I
was able to put it all into perspective and instead of fighting for it to go away and being
miserable that it wouldn't, I figured out what I needed to learn to do so that I could not
surrender EVERY ounce of my happiness and being to this disease.

Although she is unfortunate to have this pain, she is BLESSED to have an invested, caring mother to hold her hand through it all.

You guys are in my thoughts! ((((( hugs )))))

Thanks again guys...so much...for the information and support. It is so appreciated. I feel for all of you. i get Ms occasionally and they are so hard to deal with for those few days. You are all my heros moving forward with the pain that you all feel!

Jennifer,

I'm holding you and your daughter in my prayers. I hope the good doctor can provide some relief.

Take care,

Becky

Hi, Jennifer. How old is Crystal? My daughter Zoe just turned 17. Zoe sounds a lot like Crystal. she has always been a high energy/ high achiever type girl. She has Hemiplegic migraine that are becoming more frequent. She had an episode oif severe depression several months ago and threatened suicide. She was in the hospital for 2 weeks. I think the Neurontin was partially responsible for her acute depression. She is still very fatigued and having a lot of head pain. It is so sad and frustrating. I understand your feelings! Can Crystal use the computer? I will ask Zoe if she would talk to Crystal online if she wants to. Not 100 % sure Zoe will do this since she prefers to pretend nothing is wrong! But, I will try.
Hugs,
Cindy

Zoe said she would like to talk to Crystal by e-mail. If its OK, let me know. I will send you her e-mail address privatly.
Cindy

Jennifer, is Crystal going to be ramping up on Diamox?

Anna started Lasix last week, but it is for the fluid build up in her body. So far it makes her pretty dizzy.

Diamox and Lasix are both prescribed to lower intracranial pressure. So if Diamox doesn't help or causes too many problems, a person can try Lasix.

Cheryl

My daughter just got the internet this week! I'm broke so we had to wait a little while. That would be great if your dayghter wanted to email Crystal. She has gotten out of her funk a little bit. She is 13. I am sorry that it has taken a bit to get back to you but work has been really busy. Shoot me an email and I will forward you Crystal's email address! Thanks so much!

Hello,
It sounds like I have the same symptoms as your daughter. Well, sorry to say not as extreme.

Nutrition is a key factor. Just 2 weeks ago my migraine peaked, and my parents made sure I had the basic food groups in every meal, made me journal it in and it helped. Let me tell you half way through a meal, I felt so nauseous and I cried. I could imagine what your daughter is going through. When I have migraines all I want (if I have an appetite) is toaster waffles... and i hate toaster waffles.

I have been in and out of school it seems like every other week. It is hard, but hopefully it will get better. I just wanted to let you know that I am here for support and from a daughter's point of view... She does not hate you. As much as it seems like it she does not hate you. When my migraine peaks I can get pretty mad with my parents, I think my sister gets the short end of the stick most of the time. It is hard; you feel alone when tons of people near; you feel sad when the air is filled with joy. There are tough times and then there are terrible times. But soon there will be a time that you will just want to cry, because you have not seen your daughter filled with so much joy and happiness.

Just hope for the best. You can count on me to hope and pray for your daughter and everyone to get better, healthy, and happy.

Lillian

Hi Lillian-

Thanks so much, Lillian! That helps me, and I am still so sorry for how you are feeling.



Hi Cheryl-

Thanks for the information as always! Right now Crystal is taking the diamox at 250mg twice daily. She has been doing that since we saw Dr Wilken, however, it really does not seem to be doing anything at all. I know that his plan is to ramp her up and we see him again the Saturday after next. I am pretty sure that there will be a little change at that point. I give you so much credit. I don't know how you have done this for so long!

Sometimes Diamox can actually worsen HA pain. So be aware of that. It was very true for Anna. She cannot tolerate Diamox.

Anna's HA flares up within hours of starting it, and it never gets back to "normal" pain until she discontinues Diamox.

She is doing OK on a small dose of Lasix, other than being dizzy. But it is not prescribed to lower her pressure because right now, she has supposedly has "normal pressure." Whatever that is...

Two of my leaker friends had LP's done in the CT scanner this week which revealed "normal pressure." But they were leaking at the time. Their leaks were identified, and they received blood patches.

So leaking CSF, with "normal pressure."

I do still wonder if Anna is leaking.

Cheryl

Lilian,

You are very insightful and eloquent. I look forward to your posts.

Charlotte