Never Ending Headaches

[jbower79]

Hi Maz,
Thanks for your suggestions. We have had a CT Scan and MRI of the brain and all was clear. The LLMD in IN first thought of pseudo tumor cerebri. This condition is sometimes caused by Lyme or abx with the most typical abx being mino. I tried to get her back on minocin (brand vs generic which she had previously had and did not tolerate) but she only had 2 50 mg doses — 1 dose a day 2 days apart. The headache started 1 day after the second dose and I was so afraid that it was the minocin that I stopped it right away. Could the Minocin be the cause and still be causing the problem?

Dr. L said the gold standard diagnostic tool to check for pseudo tumor cerebri is a lumbar puncture but because it typically causes inflammation of the optic nerves, she feels comfortable treating if an eye exam indicate optic nerve inflammation. So, I took Abby to her eye doctor and her optic nerves were completely normal so the LLMD ruled out pseudo tumor cerebri.

I am concerned about lyme meningitis or aseptic mennigitis caused by the abx. She was on Augmentin for almost 40 days. I found the link below describing aseptic mennigitis with Amoxicillin so I believe Augmentin could likely cause it also. Without a Lyme doc close, how do you get one to order the tests to check for these conditions. I know the ER visit 2 weeks ago was a nightmare. I got all kinds of crap from the attending physician because Abby was on Augmentin for chronic strep. There was no way I was going to tell him she was being treated for Lyme. We don’t feel like we have any place to take her for help.

http://www.ncbi.nlm.nih.gov/pubmed/21239175

Abby has been off of the Augmentin now for about 2.5 days. I know it takes about 4 days to clear the system. I also took her off of the Rifampin she started last week for Bartonella in case the issue is nerotoxin build up.

Other things we are investigating — Shingles — ruled out by dermaologist as the red spots on her head did not look like shingles. TMJ — Dentist examined her jaw yesterday and said she definitely had some issues so he made her a mouth guard last night. We picked it up today so we will see if it helps. She is very sensitive to light, smell and gets extremely car sick so even the 10 minute trip to the dentist was a major issue for her.

[jbower79]

Abby just tried to describe her headache to me again. She keeps saying that it is the muscles in her head that just won’t stop spasming. Does that sound familiar to anyone? To her, it is not the blood vessel issue that is typically related to migraines. I think at this point if she had a gun she would use it.

[NancyB]

Hi Joyce,
My son has Lyme, Bart and Babesiosis and has had continual headache pain although it sounds like a different presentation than Abby’s. My heart goes out to you as I know how difficult it is to see your child in pain and not know what will help.

I know this was discussed earlier, but at one point my son’s doc tried a course of Diamox to see if he could be experiencing pseudotumor cerebri or intracranial hypertension even though he had a negative optical exam. It didn’t work for him, but again, his symptoms are quite different from Abby’s. I’m wondering if your LLMD would be willing to try it in light of the duration and intensity of pain that she’s in? I don’t think the side effects are very intense and if any, or short-lived with discontinuation. Our doc thought it was worth a try and if I remember we did about a one week course.

Headache is also typical in Babesiosis. I would imagine that your LLMD has tested for that…if not, the FISH test from IGenex is the most reliable. I hope that she finds some relief soon.

Nancy

[PhilC]

Hi Joyce,
@jbower79 wrote:

Abby just tried to describe her headache to me again. She keeps saying that it is the muscles in her head that just won’t stop spasming. Does that sound familiar to anyone? To her, it is not the blood vessel issue that is typically related to migraines.

That sounds somewhat like a tension headache. It’s puzzling, though, because the sensitivity to light and motion are migraine headache symptoms.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[jaminhealth]

Just throwing this out, Alphabiotics work re-boots the brain, there are a few Alphabiotic workers in FL, I think. Here is from one site I found:

What Does The Alignment Process Do?

It releases you from inappropriate states of stress

Stimulates Alpha ‘relaxed -not-stressed’ brain waves

Instantly reboots and unifies the brain hemispheres

Balances energy within the nerve system and muscles

Releases stress held within the mind and body

Places you in a most favorable position to heal yourself

Participating In Alphabiotic Care

Physical – By releasing muscle tension, the body assumes bio-mechanical balance with gravity

Mental & Emotional – The mind becomes calm, peaceful and clear-thinking

Spiritual – We return to that state of connectedness to our source of power, inspiration and wisdom

[jbower79]

Hi Nancy,
Thanks for the information. I did check with her Lyme doc after reading your post but she did not feel like Abby needed the Diamox and said it is basically just a water pill. So, I guess if there are OTC “water” pills, she must feel like I could just go get that and give it to Abby.
After making the s___t list at both her primary care’s office and a neuro’s office, I did finally get her an appt with a neurologist next Wednesday. I told them she would be there if she didn’t die first. I am certainly hoping this headache does not last until next Wednesday, but with our luck it probably will.
Neither of the Lyme docs we have taken Abby to test for the coinfections they just treat based on symptoms. Right now I guess she feels that Bartonella is more prevalent given the stretch mark rash that Abby has. Some are true stretch marks and others are suspicious of Bartonella. the Lyme doc did mention that headaches are one of the Babesia symptoms.
Abby has not had an appetite at all over the last couple of weeks. Is that a sign for one of the co-infections? Of course, she doesn’t mind the no appetite because she had put on extra weight with this illness and had just started feeling well enough to go to the gym and work it off. She has lost almost 20 lbs since the middle of January, but the last 6 lbs has really come with the no appetite issue. She has not been to the gym in over 2 weeks now since the headache started.

Thanks again for sharing your info and experience.
Joyce

[PhilC]

Hi Joyce,
@jbower79 wrote:

Hi Phil,
Abby is actually only taking Augmentin right now. I think she needs to start something else soon. Before her last strep infection in January, she was only on Azythromycin 2-3 time a week. She does take vitamins — B12, B5, and a multi mineral. She takes plenty of probiotics and then 1600-2000 mg of magnesium to help with bowels.

I am wondering why Abby is taking vitamin B5 and B12 and not B-complex or a multivitamin. Also, what kind of vitamin B12 is she taking, how much, and does she take it orally or in another way? And how much calcium is she taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

@jbower79 wrote:

Hi Maz,
We have had a CT Scan and MRI of the brain and all was clear.

Could the Minocin be the cause and still be causing the problem?

the LLMD ruled out pseudo tumor cerebri.

I am concerned about lyme meningitis or aseptic mennigitis caused by the abx. She was on Augmentin for almost 40 days.

We don’t feel like we have any place to take her for help.

Abby has been off of the Augmentin now for about 2.5 days. I know it takes about 4 days to clear the system. I also took her off of the Rifampin she started last week for Bartonella in case the issue is nerotoxin build up.

TMJ — Dentist examined her jaw yesterday and said she definitely had some issues so he made her a mouth guard last night. We picked it up today so we will see if it helps. She is very sensitive to light, smell and gets extremely car sick so even the 10 minute trip to the dentist was a major issue for her.

Hi Joyce,

Great job getting the imaging done and being sure to cover corners!

Sounds like you’ve ruled out pseudo tumor cerebri. This is just a fellow patient take and none of us here are medical professionals nor can we diagnose anything, but it’s just hard to conceive that two doses of 50mg mino spaced two days apart would cause this unless it was a major herx symptom.

I’m also doubtful about amoxy causing aseptic meningitis, which is so rare. The link was to one case study and the patient developed it quickly after starting amoxy (Abby was on it for 40 days prior), the guy had suffered a couple times before using the same abx, and his head pain and fever cleared very quickly upon cessation of the abx. This doesn’t seem to be the same pattern as for Abby.

What does sound more likely from reading your descriptions of photo-sensitivity and the vestibular symptoms is chronic neurotoxin build-up from her Lyme….this, in addition to her previous experience from detoxing. Rifampin may cause headache, but this would likely be more in line with a herx reaction, but the symptoms described by you don’t seem prevalent according to the following link:

http://www.drugs.com/sfx/rifampin-side-effects.html

Okay, so the TMJ connection makes really good sense here! Neuralgia caused by TMJ could feel like muscle spasming:

http://www.emedicinehealth.com/trigeminal_neuralgia_facial_nerve_pain/article_em.htm

“People often call trigeminal neuralgia “tic douloureux” because of a characteristic muscle spasm that accompanies the pain.”

TMJ is a common Lyme symptom and will invariably worsen with herxing when anti-microbials are targeting the bugs.

Also, if you read the following link, it seems that neuro-vascular inflammation can also cause myalgic headaches, such as when an artery impinges on the trigeminal nerve or some inflammatory process is at work, such as with a chronic infection.

http://www.ehow.com/about_5527624_temporal-myalgia-headaches.html

I understand from others I have spoken with that this type of pain is excruciating (can make folk feel suicidal as per link above), will come in waves with periods of remission.

Joyce, this must be a nightmare for you and I know how difficult it is for anyone who must travel so far to see and further work with their physician from such a distance. I hope the dental appliance brings some relief for her. My best suggestion is that you ensure that the lines of communication remain open with Dr. L. either by FAX, email or phone consult, so that she can provide input in-between in-person consults. You are paying for these services and so you have every right to use them and to tap her skills. Has she had any labs run recently?

An additional thought is to try to find out if you have any ACAM, functional or integrative physicians nearby who can assist Abby with detoxification in a safe way. Just seems strange that the symptoms seem to be coming up every time she starts a new abx regime or attempts to detox. Would be great if you had a Dr. K. or Dr. S. nearby.

http://www.chronicneurotoxins.com/

http://www.klinghardtacademy.com/Protocols/Klinghardt-Neurotoxin-Elimination-Protocol.html

http://andreannarainville.com/patient-support.html

[jbower79]

Hi,
So Abby is still “suffering” from this headache and has not been to school for 3 weeks, nor has she done any schoolwork at all to try to keep up. She has not done much in the last 3 weeks, but every once in a while she apparently feels well enough to do certain things. Today, she said she had to do something so she went out in the sunshine (no sunglasses) and washed her car. She was busy doing that for almost 2 hours. She also finds relief when she bakes.
I am not sick, so I cannot relate to this at all. For those of you who suffer from Lyme and maybe have had these debilitating headaches or other pains, is it always that painful, or should I consider depression as part of the equation? Abby has told me a couple of times now she doesn’t even care about graduating anymore. She was just offered $20K a year to go to the University of Kentucky — she is no dummie and has always gotten good grades.

What do I do? My husband does not really support counseling because we tried it once. I almost think she needs to be on an anti-depressant, but since she has the polymorphism with how her body metabolizes medication, I don’t know if it would even work for her. The Trazadone for sleep and Amitriptyline for sleep have never helped her and they are in that class. Pain meds never work either.
I am so desperate! I can undertand taking a break after H.S. and not going on to college for a year or two, but for a 4.0 student to end up with no H.S. diploma I cannot accept.

FYI — she is scheduled for a spinal tap Tuesday to check the pressure of the spinal fluid and I am hoping to get them to check for Lyme PCR and Lyme antibodies along with tests for other infections.

Thanks for any suggestions!
Joyce

[amutch]

I sympathise so much. Just a thought – does Abby have long, thick hair?

As a teenager I also had constant headaches, some of which were so bad I had to be hospitalised. After years of tests, scans and medications, it was found that the weight of my waist length, thick hair was putting stress on my neck muscles and nerves. Once my hair was cut (a traumatic day) the headaches eased up. I still have to avoid nuts, chocolate and pork though – too much of any of these can cause a headache.

Fingers crossed for Abby – I sincerely hope you find a solution fast.

[jbower79]

Hi Amutch,
Thank you for the tip. Abby does have very long hair, but it is very thin. It has been thinning over the past 3 years of her sickness. She doesn’t lose clumps of hair, but she doesn’t have any new hair growth so 3 years of normal hair loss causes one to have very thin hair. I know it is stupid, but I am terrified she is going to lose all of her hair before we figure this out.

I can’t imagine as thin as her hair is that the weight of it would cause problems. Now my youngest daughter has very long thick hair. If she ever starts complaining that will be a first consideration!

Thanks,
Joyce

[PhilC]

Hi Joyce,

It is quite possible that Abby is suffering from secondary porphyria. It is a side effect of some infections, and taking an antibiotic can exacerbate it by killing infected cells, causing the release of more porphyrins.

“One of the neurotoxic effects of porphyrins is headaches.”

“Porphyrins are neurotoxic and have numerous deleterious effects on the nervous system including anxiety, depression, bowel and digestive disturbance, and interference with sleep, rapid pulse, and even psychosis.”

Source:
http://www.prohealth.com/library/showarticle.cfm?libid=12763

See also:
Secondary Porphyria: what you should know before starting a CAP

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[kseevers]

Our youngest daughter is 16 & had the same type of headaches dayly and relentless, did medications, had her eyes checked and was running out of options and patience when I took her to the dentist for a cleaning & they suggested I take her to an orthodontist to see what they thought. It ended up being that her jaw was out of alignment and he said he could actualy feel the blood supply stop when he put her jaw in certain positions. Now she just gets normal headaches & dishes out the migrains to me !! Hope this helps

[NancyB]

Joyce,
sorry to hear that your daughter has not had any relief from the headache, but glad that she was able to get out and wash her car–doing something ‘normal’ can be a boost when she’s trying to cope with all the physical and psychological fallout from illness.

You mentioned that Abby would have a spinal tap on Tuesday. That should tell you whether or not she has high intracranial pressure. And yes, it would be ideal to have the fluid checked for infections. It’s not often that you get this opportunity. When my son had a second LP, we got a kit from Igenex to test for Lyme and co-infections and I was so glad we did b/c it was positive for Lyme and at that point his diagnosis had been clinical, with no truly positive tests.

Of course, it is somewhat rare to even find the bacteria in the spinal fluid even when someone has Lyme, but it is a true positive. As long as she’s going through this procedure, hopefully your LLMD will have the means to have the testing done and use a lab like Igenex or MDL. You should talk about this right away, as they may not be set up to send the samples out without some planning.

Just to share what our experience has been: it is very important that she lie down in a prone position for 12 – 24 hours after the test in order to avoid or minimize the post-LP headache that can result. Try to have her be very hydrated going in and afterwards. Our doctor told us that the patient should lie flat, and only get up to go to the bathroom. Planning for this will make it less inconvenient–having movies or tv to watch, games to play, or reading. Some doctors will immediately do a ‘blood patch’ which will seal off the area of the spinal column that has been punctured, minimizing the loss of fluids. You may want to ask about this in advance if they haven’t mentioned the post-procedure care already. On the other hand, in the event that she does have high pressure, she may have some relief from the tap as it will lower her pressure.

Also, if you haven’t checked it out already that Lyme Disease Association has much information–here’s the link to ‘Children with Lyme’…many articles and resources:
http://www.lymediseaseassociation.org/index.php?option=com_content&view=category&id=12&Itemid=147
and lymedisease.org:
http://lymedisease.org/resources/children.html

It’s unnerving to have an illness come along and derail Abby’s and your family’s life–especially at this critical point in her development–it takes a lot of searching and patience to cope. I’m not sure where you live, but in the NE there are some great social workers and counselors who specialize in Lyme issues with school-age children. Feel free to PM me if you have more questions.

Hope you find some answers and that Abby gets some relief soon…hang in there,

Nancy

[jbower79]

Thanks to all for the suggestions and support. The hospital actually got Abby in today for the spinal tap. All went well — we are back home now and the procedure was done at 11:30 a.m. We left the hospital at around 2 p.m. They did discuss laying and taking it easy for several hours. I am sure Abby will do that. I need to go get some movies she has not seen.

The radiologist said she would hold the spinal fluid for a week so that I could try to get our LLMD to order lyme PCR and lyme antibody testing. I did not know about the Igenix lab kit. I wonder if we have time to get it. Unfortunately, her Lyme doc does not work on Fridays! I did email and call her so not sure if she will get my messages or not. I think I will call and email again to see if she will order the kit from Igenex and have it overnighted or something. I will also check with Igenex myself to see what they need to have the kit sent.

Will keep you all posted! Interesting though I did not get any responses about the depresion question…could her headache be all depression or given her history/diagnosis is this headache all completely real?

Best to all,
Joyce

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