As with many Lyme patients my daughter has had a continuous headache for almost 2 years now.
Earlier this week her opthamologist detected that she has swollen optic discs (papilledema) in both eyes using a special machine.
He and her neurologist concluded that high intracranial pressure was causing the headache but her lumbar puncture today showed her opening and closing pressures to be in the normal range. (15 and 12 respectively)
Now the doctors are at a loss as to what's causing the headache.
She was being treated with IV anti-biotics up until this past week but they gave her no relief.
Has anyone has swelling of the optic nerve as a symptom along with an unrelenting headache and if so did you find any meds that helped you get relief?
Thanks very much, Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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My daughter was admitted to the hospital late this afternoon because her headache got so much worse after the LP which was done early this morning.
The increase in the headache happened almost immediately following the LP (within 15 mins).
It's not postional either as the doctors thought it should be. She has the screaming headache whether she laying down or upright.
Last week she took Diamox for 1 day and stopped because we found out the LP was scheduled and the doctor didn't want the results altered by the med so she stopped.
But for that 1 day the pain in her eyes was reduced so it must have been doing something.
Because her pressure came out normal the doctor doesn't believe the Diamox or Methazolamide will be of any benefit since these are used to reduce eye and I think head pressure.
She has some Diamox from about a year ago so we're going to try it when she gets home.
I'm just trying to find out if anyone has had normal CSF pressure but benefitted from Acetazolamide or Methazolamide.
Thanks, Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I took Acetazolamide for 2 weeks, but it dehydrated me to the point that it made me feel awful so I stopped taking it. My headaches were not what you would call severe, but LLD says all Lymies have swelling in the brain and this was an attempt to help with that and hopefully reduce other symptoms as well. I did not have a LP.
We are all different, so this drug could be just the one for your daughter. It is supposed to reduce fluid around the brain. For me, it reduced fluid in my entire body and left me feeling worse than before I took it.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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My daughter was admitted to the hospital late this afternoon because her headache got so much worse after the LP which was done early this morning.
The increase in the headache happened almost immediately following the LP (within 15 mins).
It's not postional either as the doctors thought it should be. She has the screaming headache whether she laying down or upright.
Last week she took Diamox for 1 day and stopped because we found out the LP was scheduled and the doctor didn't want the results altered by the med so she stopped.
But for that 1 day the pain in her eyes was reduced so it must have been doing something.
Because her pressure came out normal the doctor doesn't believe the Diamox or Methazolamide will be of any benefit since these are used to reduce eye and I think head pressure.
She has some Diamox from about a year ago so we're going to try it when she gets home.
I'm just trying to find out if anyone has had normal CSF pressure but benefitted from Acetazolamide or Methazolamide.
Thanks, Paul.
Paul,
How is your daughter doing now?
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
My headaches went away after babesia treatment.
However, lyme is well known to cause optic nerve and other ocular problems. Here are a few of the articles published on the subject. Can read abstracts for them at pubmed website.
1:
[Lyme disease--case report]
Nicula C, Stanila L.
Oftalmologia. 2008;52(1):54-8. Romanian.
PMID: 18714491 [PubMed - indexed for MEDLINE]
2:
Optic neuropathy from viruses and spirochetes.
Bhatti MT.
Int Ophthalmol Clin. 2007 Fall;47(4):37-66, ix. Review. No abstract available.
PMID: 18049280 [PubMed - indexed for MEDLINE]
3:
[Onset of Leber's hereditary optic neuropathy in association with borreliosis]
Macarez R, Bazin S, Lagauche D, Soulli� B, Giordano P, May F, Guigon B.
J Fr Ophtalmol. 2005 Dec;28(10):1095-100. French.
PMID: 16395203 [PubMed - indexed for MEDLINE]
Free article at journal site
4:
Isolated optic nerve lymphoma diagnosed by optic nerve biopsy.
posted
Is it possible that lumbar punctures create a path for CSF and its contents to leak into other parts of the body? Capa, is that what you were implying? If so, that's a scary but interesting thought.
That said, once the bugs are in the CSF, the nasties can execute their biological program and set up shop for the long term.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
Another possible approach might be to try Benicar. This blood pressure med is a strong cerebral vasodilator and supposedly has anti-inflammatory effects.
5 mg 2 times per day 9a very low dose) stopped hubby's headaches and significantly reduced tremors and myoclonus. He does have some side effects from the lower blood pressure but for now this med seems to be helping him.
He tried another similar B.P. med -- Atacand -- but it did not work nearly as well and he ended up in the ER within a week. Insurance does not want to pay for the Benicar but his LLMD has been able to give us samples for now.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Thanks very much for the great replies. I'm going to review the info tomorrow when I'm more awake.
The screamer of a headache caused by the LP subsided after 3 days but she had to be on some really strong pain killers.
Her headache is back to its normal, constant 8 or 9 on a scale of 1 to 10.
Her spinal fluid was tested for Lyme but came back negative. We're still waiting on the tests for the co-infections. I know just because the test came back negative doesn't mean it's negative.
I'm going to talk with the neurologist who ordered the test and see what the specifics are. Did they find anything but not enough to call it a positive. I'll have to find out.
Does anyone know what kinds of tests they do on the CSF for Lyme? Is it the same or similar to what they do for blood? Do they test for the protein bands such as with the Western Blot test?
Even though her LP pressure came back in the normal range I'm still thinking it's a pressure thing because she's always saying it's a "pressure" headache.
She had an old prescription for Acetazolamide available, so we started her on that. It's eliminated the pressure she was feeling in her eyes but has not touched the headache yet.
She just started it 3 or 4 days ago so maybe it will help if she continues taking it.
To tolerate the headache she has to take strong pain meds which prevents her from driving or working or going to college. Most symptoms have resolved except for the headache.
Hopefully the Acetazolamide will be the answer. I'm going to try and get a prescription soon for Methazolamide but her neurologist had never heard of the medicine. I was a bit shocked at that. He said he would look it up.
Thanks again everyone for the great info. I really appreciate it. Paul.
Posts: 80 | From Massachusetts | Registered: Feb 2008
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posted
Lou is correct -- the most common Lyme test using CSF is a PCR test. Have heard that only 6% or so test positive by PCR.
If her pressure is normal I suspect a diuretic will not be of much help. Rather than her entire brain being swollen as would be the case with either encephalitis or meningitis, it may simply be a bloodflow issue where the capillaries are constricted. Could be caused by inflammation or due to the way Lyme affects the sodium/calcium channels.
If a diuretic or vasodilator does not help a 3rd option would be low dose Lyrica -- this seizure med is supposedly a calcium channel blocker for the brain.
Has she ever had a SPECT scan -- that test would probably be very helpful in this situation.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
This kind of never-freaking-ending headache often means babesia. I would try testing/treatment. Don't wait for a neurologist to mention it - won't happen. I used Relpax (sparingly), it was about the only thing to touch it. I hope she finds relief but if she has babesia, treatment for it is the only thing that will help - and it will get worse before getting better. But take heart - it DOES get better.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Forgot to add- Topomax -- taken at night prophylactically - helps the head pain somewhat.
Get a complete copy of the lumbar puncture report -- other things may be off besides pressure. Elevated proteins are a common finding with lyme/co-infections and other values may be skewed, indicative of blood/brain barrier compromise.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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