posted
My kids (Jake-19 & Jordan-15) have severe, unrelenting headaches 24/7. Other than lumbar punctures, we have not found anything to reduce their headaches.
Next month will be 7 years since Jordan's headache started and Jake's started a few months later.
They take Tramadol/Tylenol to take the edge off their headaches. Nothing takes the pain completely away.
They have tried a lot of meds and are currently taking Topamax - starting with a low dose and increasing slowly.
Jake & Jordan are in treatment for Lyme and co-infections.
They do have intracranial hypertension. Their opening pressures on their last LPs were 420 & 450.
We live in the St. Paul/Minneapolis area and they have a great neurosurgeon. At their appointment on Tuesday, he said he has never seen any other kids with the same problem. (We've heard more than a few times!)
I know I've read posts here about other kids with severe, unrelenting headaches.
I'm curious about:
1)How many kids have this symptom 2)Have you found anything that helps
Thanks, Peggy
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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Lydie
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posted
Pab, you will remember that my daughter had the same headache problem 24/7, for almost 3 years. She tried all the same meds that your guys have tried. Meds either had bad side effects, caused seizures, or didn't work. She missed months and months of school, basically the whole of middle school (I know J and J are home).
She kept saying her head felt swollen, but noone believed her. One LP was normal, but it was done in the am and she would have the worst pain in the pm. At some point, her whole body started to swell in the pm, which stretched the skin and created purple stretch marks, again, only i the pm.
Strange, huh?
The school nurse discovered that during a headache, on top of her head, there was a pulsing bulge.
We tried Lasix, a diuretic, to see if it helped, and it did, a little.
However, the miracle of relief occurred when she was diagnosed with yeast, leaky gut, and food allergies by an integrative medicine MD.
He put her on a diet that excluded dairy, wheat, corn, citrus,eggs,peanuts,tomatoes, soy....rice, veggies, some fruits, chicken, pork, fish all okay.
The first night, her headache was so bad that she went to the ER. It was the worst ever, by far. She also started to pee every 30 minutes. Weird. The next day, the daily headache was GONE and it has NOT come back. It's been 9 months.
She still has migraines, more in the winter, but not the daily headache, which was entirely different. For the migraines, she uses Butalbital, which you may even have suggested.
She is in school and doing lots of stuff, no longer home suffering. We had also tried PT, chiro, massage, cranial-sacral, swimming in a therapeutic pool..along with umpteen meds. We had also gotten the "it's psychological" from some.
Have you tried alterations in diet? You are so thorough, you might have....Do J and J have alternative med. MD's? I have always been conservative and sketpical, but boy oh boy am I glad we tried it. Our PCP referred her to one who is covered by insurance.
I would be overjoyed if this helped your guys at all. I don't think my daughter's previous multiple doctors will even believe this, but it's real and amazing .
The key for her was the fluid retention (she also was not peeing normally, only 1/4 cup in 24 hours). I still don't reall understand,, but it must have had something to do with leaky capillaries, from inflammation in the blood vessels, as a result of the leaky gut, which caused food molecules and toxins to inappropriately migrate to the bloodstream via the gut, a result of abx and other mysterious factors.
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Thanks for the information. In the beginning, both were tested for food allergies and they didn't have any. They went on the elmination diets anyway and it didn't help.
I'm happy to hear that your daugher is doing so much better!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My 23 year old has had the 24/7 headache for over 6 years. He went to a great holistic chiro before we knew it was lyme and actually had muscle testing done. (I did not realize this was what Gigi has been talking about.) He went on a three month diet with no gluten. (No change).....Did heavy metal testing. (Nothing) Used all of the good products: cordymax, NADH, and others. No change. The chiro sent us to a pain specialist who suggested the lyme testing thru Igenex.
The neurologists (3) we saw for almost two years before the holistic chiro had him on the topamax, the gabritril, the elavil, the neurontin and more.....no change.
Since being on abx since late '03 there has been no nudging that headache......or anything else for that matter.
I think it must be babs since he has not relieved any symptoms.
Has anyone found the headache to be a babesiosis symptom?
Is there other you treatment you would recommend?
The PT, physiotherapy, acupuncture, and chiro did not help. I am wondering about cranial sacral treatment........
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Jake did cranial sacral therapy and it didn't help.
Has your son been treated for Babs?
Has he had a lumbar puncture to check his opening pressure?
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
pab
No to both questions. I just think it has to be babs. Right now he is doing IM bicillin, ketek, and alternating it with flagyl. I don't think he is having the response they want him to have so we will reevaluate at his mid April appointment. I just don't know if we should even bother waiting until then to press for babs treatment. I want it yesterday!!!!
What happened was my son became so discouraged doing all the body therapies..... without a change.......I mean months and months of therapies.
Do you think I should ask about the test you mention?????
Is the headache lyme or babs with your guys????
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Lydie
Unregistered
posted
Pab, I'm sorry that the elimination diet angle didn't work. I dont' know if it is relevant, but my daughter also tested negative for food allergies (with the blood test) and it was explained to me that her reactions were mediated by a different antibody .
Not to press, but was the elmination diet very strict, meaning reading labels, and avoiding things like maltodextrin, or food starch, or natural flavorings etc? (Celiac sites have some of this info).
The allergy problem apparently has a pattern in which, if the allergens in the diet are reduced or eliminated, then the sensitivity hugely increases for awhile (months) so that traces of things can wreak havoc.
Then, months later, the sensitivity goes down and you can be a little less careful.
Again, Pab, you are thorough so you probably know all this. The similarity w/the fluid issues just really hit me.
BTW my daughter did do a challenge with milk, but got EXTREMELY sick, for about two months, no kidding- from 2 glasses of milk in a day. They explained that since she had been off, they must have asked her to do the challenge too early, when she was still at maximum sensitivity.
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posted
My son has also had the headache 24/7 and nothing works! Like you all we have tried it all! I wish there was an answer for him. He suffers so from it and I feel if the head pain would reduce then maybe he can do something maybe even go back to school. My son is 16 and his head hurts all the time in the back running up his neck!
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
I had a headache that never went away for six years. It was extremely disabling, and no migraine treatment in existence was able to touch it.
Here is what finally got rid of my headache: 12 grams of amoxy a day for a month plus treatment for babesiosis, mepron (two teaspoons a day) plus zithromax (250 mg a day.) One morning I woke up and the headache was gone. It never came back --that was in the year 2000, so I have now been headache-free for longer than I had the headache.
I am not a child but if a headache is caused by active Lyme disease and/or babesiosis the only thing that will relieve it is treating the infection --treating the infection IN THE BRAIN. I would treat the infection at the root, if I thought that was the cause, before doing anything else.
IV Rocephin might do the trick, too. It did for my son. His headache only lasted two years without going away before he was treated, and he was a child.
His headache went away with ONLY IV Rocephin --he was not treated for babesiosis at that point, although he was, later on.
Posts: 8 | From CT | Registered: Feb 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dear PAB,
I so hate to hear that your guys still are not getting relief. I just don't even know what to say.
Then to hear of you others with similar situations--it is so heartbreaking I can't express how concerned I am for the kids and sad for their suffering.
Thank you God for wortman! We needed a success story. That all the kids can wake up one day and be headache-free.
I'm so sorry to hear the boys are still dealing with this awful chronic pain.
I don't have much knowledgeable feedback, because it is one thing we have not experienced.
We did have severe brain issues to deal with, just that the symptoms of inflamation/toxins/vasculitis effected a diferent 'center' I am guessing. Tho when he went back to school, he did start getting headaches for the first time...it seems to be an in-building thing.
I also know that this enclosed cavity is difficult to clear... however it certainly is concerning with all you have done that this has not changed at all.
Does the pain fluctuate in severity, or in any kind of cycle at all?
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Lydie
Unregistered
posted
The hard part for me, as a mom, still is evaluating whether it really is Lyme that caused the headache. We know that our daughter had Lyme in her brain, because she also had a psychosis, and seizures, and also it was/is in her autonomic nervous system (now causing cardiac stuff, but at least she is in school and doing her music etc.).
However, if the change in diet is what finally brought my daughter heaadache relief, then, in fact, it was the TREATMENT for Lyme that caused the headache. This is not direct, but because the abx caused both yeast and then leaky gut, which in turn caused food allergies, which caused leaky capillaries, which caused fluid buildup causing the headache. Unless maybe Lyme can cause leaky gut and food allergies...?????
Concerned mother, if the headache is back of the neck, that is similar to the pain my daughter still has, different from the daily headache, triggered only by weather changes. Is it muscular in origin, for your son? If you massage, are there swellings in there (usually muscle spasms)?
The chronic daily headache was on top of her head, which was weird. Pab, where is the pain, mainly, for J and J? Are there any triggers, or times of day when it is worst?
Anyway, Wortman's cure came with certain abx, but my daughter's problem was supposedly caused by abx. It is so hard to know what to believe. Everything is so mysterious.
Pab, my heart goes out to you and your boys. We know what it is like to havechildren in pain like that, every day, missing out on the years you dreamed would help them flourish. I'll bet they are amazing people though- these suffering kids all seem to be amazing people.
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posted
Lyddie - they don't have any other "fluid issues" except for too much spinal fluid.
Mo - the pain stays fairly constant. It does increase with noise, lights, stress, etc.
valymemom & concerned mother - the kids' neurosurgeon did a spinal tap (lumbar puncture) to find out their opening pressures. High opening pressures indicate intracranial hypertension. Normal pressures are 80-180 and their opening pressures were 420 & 450 in December.
FYI - symptoms if intracranial hypertension: * headache * transient visual obscurations or blurring * pulse synchronous tinnitus or "whooshing noise" in the ear * pain behind the eye * double vision * visual loss * pain with eye movement
Jake & Jordan started Lovenox to see if a clotting disorder could be the cause of their headaches. It's too early to tell if it is working.
Jake & Jordan have been in treatment for Lyme and co-infections since 08/2001. They have seen 2 of the best LLMDs.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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liz28
Unregistered
posted
That was the big bart symptom for me. I first heard about the rifampin-zithromax bart treatment from Dr. J, and modified it with ketek (which is strong for a kid).
I also get headaches in a milder form, relatively speaking, with babesia. Alas, in that area, I don't have an easy answer. My ideal would be mepron, primaquine, and artemisinin, but that combination is not easy to get prescribed. I'm still working on getting that drug protocol together, and hope to report good results soon.
Also, acid reflux can cause severe sinus pain. The acid travels all the way up to the sinuses and sloshes around. I take two Prevacid per day, and they work perfectly.
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Lydie
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posted
My daughter heard the swooshing noises, and noone would believe her (except me). I am not clear on whether her fluid buildup was spinal fluid, have not pinned docs down about the pulsing bulge on top of her head, which apparently is a little bizarre. The school nurse is the one who found it.
Pab, is there external evidence of your boys' high spinal pressure? I am still wondering if my daughter's fluid buildup was extracranial?
I don't mean to get off the track of your son's troubles, just still wondering about the mysteries here. There must be an answer for J and J, if only someone would find it. Take care. I wish for them some relief, and for you.
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quote:Originally posted by Lydie: Pab, is there external evidence of your boys' high spinal pressure? I am still wondering if my daughter's fluid buildup was extracranial?
No
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
lymetoo
Thank you for that thread. I did not read it as it was developing. Don't know how I missed it.
I am going to go to this next appointment with written notes that I copy for the llmd.
Is the drug relpax (sp) like imitrex????
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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