Headaches

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Rebjane

Super Moderator
My daughter 11 with CF has been complaining of daily headaches, starting about 1 and half weeks ago. No other symptoms.. She is relatively healthy right now; no cold symptoms or illness. She has been irritable; not sure if it is because the headaches or vice versa. She does have nasal polyps. She did complain alot of headaches last summer but I got her glasses and it seemed to resolve. Any input/ ideas would be great.

I plan on calling the eye doc to see if her prescription has changed for her eyes. Could hormones cause headaches. She is whiney which is not her personality; would the start of puberty cause this?
 
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Rebjane

Super Moderator
Thanks. She is not dehydrated; she always drinks tons of fluids. I hope it's not the polyps..that's why I am reaching for other causes..sigh. She is on daily Nasonex.
 
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AleksandraKaczynska

New member
I would cheque her sinuses and eyes...if she is wearing glasses - she in the age when the eye-sight can change quickly and then stop and then go back to normal. I had it at this age. My eisight stopped changeing afetr two years an it's all fine - nothing seriuos - glasses only for driving and movies. But at this age I had to wear tthem all the time - theu where not very strong.
 
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Red9928

Guest
I live in the northeast and for about a week or two have been waking up with daily headaches and stuffy nose thanks to the start of spring allergy season! But, yes, getting her eyes checked is a good idea. I would think onset of puberty could contribute to headaches, but talk to her doc...I've been getting more headaches while my hormones are starting to wind down...the fun of perimenopause! Good luck...headaches are NO fun!
 
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AUG19DW

New member
Rebjane said:
My daughter 11 with CF has been complaining of daily headaches, starting about 1 and half weeks ago. No other symptoms.. She is relatively healthy right now; no cold symptoms or illness. She has been irritable; not sure if it is because the headaches or vice versa. She does have nasal polyps. She did complain alot of headaches last summer but I got her glasses and it seemed to resolve. Any input/ ideas would be great.

I plan on calling the eye doc to see if her prescription has changed for her eyes. Could hormones cause headaches. She is whiney which is not her personality; would the start of puberty cause this?[/QUOTE



Take her to the ENT Dr. My daughter is suffering for months and after seeing him is now on Predisone and Cipro for a bad sinus infection and if this doesnt work they might have to do surgery. I was told that 100% of CFers have sinus problems. Did not know that. But I do now. But he said this is causing her headaches. The reason it went on for so long with her is she has had migraines since she was 2 (not part of CF). So we thought it was just a Neurology thing so we saw her current Neurologist which did a MRI and it showed sinus infection (a large pocket of infection in a few places). She is also having blury vision which he said might be caused by the polyps pressing on the optic nerve. Trying to see if the meds help first.
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brad.johns

New member
I would also say to take her to see an ENT. I have the same problems. My disease is my sinuses. When they are well I stay well. When they are sick, my lungs are sick. I have had to have sinus surgery 8 times. But every time I have it I stay well for a long time (2-3 years) with no IV's. As long as I stay on tip of my sinuses I am healthy. Get her to an ENT to make sure you have those sinuses checked out.
 
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Angelo

New member
Rebjane said:
My daughter 11 with CF has been complaining of daily headaches, starting about 1 and half weeks ago. No other symptoms.. She is relatively healthy right now; no cold symptoms or illness. She has been irritable; not sure if it is because the headaches or vice versa. She does have nasal polyps. She did complain alot of headaches last summer but I got her glasses and it seemed to resolve. Any input/ ideas would be great.

I plan on calling the eye doc to see if her prescription has changed for her eyes. Could hormones cause headaches. She is whiney which is not her personality; would the start of puberty cause this?
Click to expand...

April 28, 2014
CF and Headaches


Many CF warriors experience chronic headaches. I have not yet heard from any doctors a clear and reasonable explanation as to why we have the headaches. My suspicion is that CF is not directly the cause of the headaches, but all the stuff we do and go through as a result of CF can point to several culprits. All I can contribute to this issue is my own experience.


I have gone through periods of time with continuous headaches (if I don’t medicate the headache) and periods of time with absolutely no headaches. By the process of elimination, I have come to some conclusions.


Due to CF causing a rapid depletion of vitamins, minerals and electrolytes in our bodies, we have to supplement. For that reason and to feed my bones, I was on high doses of vitamin D and calcium. After some research, I found out that you can indeed overdose on vitamin D. And now they are saying for us to take the D but not calcium. The convention wisdom changes with the wind. Anyway, after completely quitting the D and calcium (I even quit the AquaDEK for a few months), the headaches almost went away after a week.


“But WAIT, there’s MORE!” as the infomercials say.


Several years ago, I was studying the problem of excess candida (yeast) in our bodies and the problems attributable to out-of-control candida. How many of you know that antibiotics kills the natural and good/healthy bacteria in our bodies. One of the functions of that bacteria is to keep the candida levels in check. When you kill of the bacteria, the candida runs amok.


Some of the symptoms of excess candida:
itching all over and even skin rashes
allergies develop or get worse
digestive problems
lung infection
HEADACHES


After I did a candida detox, all my allergies went away, my digestion improved, my lungs became more clear, and the HEADACHES went away.


“But WAIT, One more!”


Food allergies can cause headaches. Whether it’s really allergies or some level of intolerance, the food we eat can cause many symptoms, including headaches. For the past year, I have had way too many headaches. Tramadol relieves the headaches, but interferes with my sleep. Ibuprofen allows me to sleep, but drains my body of electrolytes. To counteract that problem, I drink water with lemon juice and sea salt, and take magnesium and potassium at night. It is a balancing act, but most nights I can avoid the cramps, headaches, and get some good sleep. But back to my main point on this one.


A few weeks ago, I did a complete fast (only drank water and coffee) for 3 days. (I am not suggesting anyone do the fast!!!!!!) But without any medication, the headaches completely went away, and get this: by the third day, my energy level was up. As I reintroduced food to my daily routine, the headaches came back. Now I am trying to mix things up to see which food(s) is/are causing the headaches. I suspect grains and gluten the most. They do cause inflammation, so I am slowly trying to change my diet to seriously reduce grains and gluten. Being Sicilian, I really love my gluten. What’s life without gluten!!!!???? I also take most of my vitamins/minerals in the morning and none at night (except for magnesium and potassium). Taking too much at night will interfere with sleep. I also think it may time for another candida detox.


I have covered a lot of information here, but my main point is that you have to try some things, do you research, and learn what works for your body. The medical doctors are not always helpful in these things, and the nutrition advice I have gotten from every CF clinic is some of the worst advice I have heard.


They obsess with consuming calories. You want 20,000 calories a day. eat 4 cases of twinkles and wash them down with martinis. Lots of calories and also a race to destroy your liver and pancreas and cause diabetes. I am more concerned with my nutrition intake than with calories. Eat lots of protein, and eat lots of fresh veggies and fruit. Get rid of the junk food. If i stuff my self all day with chicken, fish, carrots, tomatoes, celery, apples, oranges, berries, nuts, protein powder shakes, bananas, and get few calories, I will be in much better shape than someone who is packing on the junk food, cakes, cookies, ice cream, etc just to get calories. My body will have the raw materials it needs to stay healthier and fight infection. The number of calories is irrelevant to me. I try to minimize or avoid high fructose corn syrup or any corn syrup and processed sugar. That stuff is pure poison and its all genetically modified.


There are many causes to the headaches, and those causes can change over time. My own experience is probably just the tip of the iceberg on headache causes, but I hope this helps.
 
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vbs420

New member
I wanted to point out to the first suggestion of dehydration, you responded that your daughter "drinks tons of fluids".

What exactly do you mean by "tons" and by "fluids"?

Quantity depends on body mass, as well as climate.

Fluids, I assume, you mean WATER.

If for some reason, it's coke/pepsi/etc., or kool-aid, or *fruit* juice, then essentially your daughter is consuming processed and refined sugars in liquid form.

If it's anything but water, then stop. And start with WATER only.

Check blood glucose.

A symptom of my undiagnosed CFRD was headaches. In part, due to persistent sinus infections, but those were exacerbated by the high blood glucose.
 
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azdesertrat

New member
I had headaches for years before we finally figured out what the problem was.
Even though when I'd have an oxcimeter put on every time I'd go see my doctor & it showed anywhere between 90-94% sats (As time went on, sats got lower of course; up until I needed transplantation.) I still wasn't absorbing enough oxygen while working, and going through daily life.
I would wake up with a slight headache & it never went away, regardless of how much Tylenol I would take.
We finally figured it out when I was in the hospital yet again. I noticed I didn't have the headaches while in the hospital. I started thinking about this & ran some tests of my own.
I took the oxygen cannula out for a few hours & sure enough, here comes the headache!
The next morning I told my doctor what I'd done & I did the same thing. When he stopped by a few hours later, I had a headache.
He put on the oxcimeter & there I was at around 85-86% saturation.
I'm not saying this is your daughter's problem, but it may be something to think about.
Good luck, I hope you figure out what her problem is.
 
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Angelo

New member
Another possibility causing headaches. from all the stress, low oxygenation to the muscles, my back and shoulder muscles are knotted most of the time. when it gets too bad, it pulls me out of alignment. In that case, a chiro adjustment and deep tissue massage helps to relieve the headaches.
 
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