However, I am still not feeling well. I am on napraxen for the muscle and joint pain, but it's not doing anything for the headaches and it makes my stomach feel sick.

I can't take ibuprofen because it'd be like a quadruple dose.

quote:

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Originally posted by threefries:
MRI came out clear! This is good because I will likely avoid a diagnosis of MS for at least a little while. (I feel sure that this is in fact lyme and I hope to be dx'd so)

However, I am still not feeling well. I am on napraxen for the muscle and joint pain, but it's not doing anything for the headaches and it makes my stomach feel sick.

I can't take ibuprofen because it'd be like a quadruple dose.

Anyone have any ideas??

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It's not uncommon for pain meds to have little or no effect with lymies. My son tried naproxen, and the "keets" just laughed at it.

Ultimately, after a lot of trial and error with different meds, we found a duragesic patch and percocet for "spiking pain" worked the best. Didn't get rid of it, but took the edge off, so it was tolerable.

Many on here have had good success with non-narcotic pain relievers, or alternatives. Sauna's, epsom salt baths, podi patches, you name it. Good luck, and don't get discouraged, eventually you'll find something that can help you out.

Check this out for pain
http://flash.lymenet.org/ubb/Forum1/HTML/032080.html

With that bad of a headache, assuming they would have noticed meningitis or something of that nature by now...

My guess would be the headache is from a co-infection. Babesia is the usual suspect with Lyme, but where you live good old fashioned Malaria is just as likely, as it is readily available from a mosquito near you.

If you are so lucky to have that as a problem a few days of artemisinin would clear it up and the headaches. It did for ours.

That is just a guess though... someone would have to actually look at your blood to know.

Then they started coming back....I was so depressed about it.

Since then, I read "A Remarkable Medicine Has Been Overlooked," by Jack Dreyfuss.

You can buy a used copy online for less than $5, includes shipping.

I've been using low dose Dilantin, which the book discusses in depth, and the headaches are not as bad.

Also, I found out about an enzyme called Serrapeptase, which is used for arthritis pain in Europe.
I just got my order today, so I don't know yet if it will help the pain, as they say it will.

I posted about it here: http://flash.lymenet.org/ubb/Forum1/HTML/032159.html

Headaches that give you nausea or lower abdominal cramps are probably migraines.

Go to the radiology department of the place at which you had the MRI, and, if any, all other medical images performed and sign out the original images(large manila jackets), and keep them, for future consults.

Elavil (amitryptilene), Zoloft and Paxil gave her the most relief but had side effects. You need to be careful mixing these with antibiotics, which might cause the anti-depressants to build up in your system. Some peope also have a hard time getting off these drugs, although my daughter managed okay w/tapering.

You also need ot be careful about advil (ibuprofen) or tylenol. These cause rebound headaches and can be hard to "get off." Naproxen sodium (aleve) does not cause this problem, at least according to my research online.

Various people use different things for "rescue," when the pain is unbearable. My daughter tried a lot of things (although she is very stoic and has tried them nly sparingly). She has settled on Butalbital for pain crises, a mixture of Fioricet, caffeine and tylenol, I believe.

We are now at a point when my daughter wants to address her headaches w/out meds. The pain was slightly better all fall and winter but has recently resumed its intensity. We are looking for biofeedback and cranial-sacral therapy. But when the pain is bad, it is almost inconceivable to avoid medications, frankly. I can't stand watching her pain.

There are many on this site and others with headache pain that just doesn't seem to respond to anything, so doing things to take the edge off is the best they can do.

A good headache site is at the MGH neurology site. Ironically, a lot of the folks I encountered there have ended up on Lymenet, after we told thtem about Lyme headache, so there is some back and forth between sites.

my neurologist put me on topomax.
I quit it after the third week - it made me very dizzy - and i was dizzy/lightheaded to begin with.

Chiropractic does help - i'm headache free for a few days after my visit.

massage helps too - some headaches are caused by muscle tightness/cramping in your neck & scalp.

Yet most days, I still have the headache!!

I find that sometimes they are eye strain headaches - since my vision is blurry, when I use my eyes too much I get a wicked headache. They also get bad around my menses.

They have had MRI's & MRV's with normal results. We haven't found a pain med that helps much. Tramadol and Tylenol will take the edge off the headache.

I think the cause of their headaches is increased intracranial pressure. Jordan had a spinal tap on 2/4 and his opening pressure was 275. His neurologist doesn't think this is the cause of his headache. I've made an appointment with a neurosurgeon for a 2nd opinion.

Jake is scheduled for a spinal tap on Monday morning.

This website gives info on increased intracranial pressure:

http://webeye.ophth.uiowa.edu/dept/IIH/pc_3.htm

If you are having headaches every single day be sure and check all herbs & foods that you are eating.

I too had a normal MRI despite intense ongoing "headaches"...although I would describe my headache more as headPRESSURE.

If yours feels like that maybe, along with the other suggestions given to you, you may want to discuss with your doc a trial of Diamox...It helped me when no other pain reliever med even put a dent in my discomfort.

It would be an off label use, as it is prescribed for epilepsy normally, but it definately took the pressure feeling away for me.

I think it works because it acts as an anti-diuretic...so as far as side effects, it can be dehydrating to the rest of the body as well as draining the excess build up in the head/brain...so need to drink a lot...also had other side effects like drowsiness that is supposed to go away with regular use, but I only used it on an "as needed basis" so never got past that drowsiness stage...

I'm not much of one for taking meds because of side effects, but it did help when I was at my worst!!

Hope you find relief soon!!

My wife would probably be at your house with her microscope slides getting a smear if you lived nearby. It really is interesting... you should take some microbiology when you go to college.

Hopefully somebody you see will be interested in actually tracking down the cause of your problem and treating it instead of treating symptoms.

Do you have any kind of a fever. It might be educational to get a thermometer if you do not have one and keep track of your body temperature for a few days.

A slight to moderate fever in the afternoons is something I had along with bad headaches before we found the co-infection and dealt with it.

After one has had Lyme for awhile you can also develop a chronically low temperature in the 96 to 97 range... and seeing that is kind of a clue for Lyme.

For now... having plenty of healthy fluids (healthy as in teas, juices, etc., not soft drinks) to flush your system and insure you are well hydrated can help... but you are not going to feel good until you can find out what is wrong and start treating it.

We all feel bad for you knowing what this feels like and wish we had the answer to make it just go away.

There are several other drugs used for migraines that were first used as anti-seizure meds.

Dilantin stabilizes the bioelectrical activity of the cellular membrane, which apparently "fixes" a number of different problems.

Low dose Dilantin, 50 to 100 mg, starts to work in about 30 to 45 minutes. I have noticed a difference in my headaches.
I think the dose for epilepsy is 400 mg or more.

There is alot of information online about Jack Dreyfuss's book, "A Remarkable Medicine Has Been Overlooked," and also about using the medication.

At one time, copies of this book were sent to every doctor in the country.

Oh, wow. That is great news about your normal MRI. I'm so glad for you.

But sorry you're still having horrible headaches.

We're all so different that no one med helps everybody. Lymetutu had a good suggestion for the Xango.

I've used low-dose RX Elavil added to Motrin for pain/inflammation.

I don't use any kind of long-acting Motrin or NSAID (Non-steroidal anti-inflammatory drug).

I can understand how a long-acting NSAID like Naproxen could cause possible stomach problems for some. Ask your Doctor about taking a regular acting NSAID------even over-the-counter Advil/Motrin. It is possible youo might tolerate that better. Don't know.

Along with the Elavil, I also add in "Aspir-Source" by Crystal Star; it's called their "Comfort Formula." I get it at the health food store.

The main ingredient in the Aspir-Source is Valerian, but the other 9 ingredients have a synergistic effect. I don't take this everyday though. (It does not contain aspirin, but willow bark).

Magnesium Citrate capsules on a daily basis might help to lower your pain threshold. What about calcium? Try & be sure & add in calcium at a different time than the magnesium. (They compete for absorption)

It's my understanding Calcium Hydroxyapatite is one of the most absorbable forms of calcium. NOW brand is one source for it. Try to get without Vitamin D.

(You may already be getting Vitamin D in your daily multi-vitamin/mineral supplement.)

Carol in PA had a great suggestion about Dilantin. Pre-lyme diagnosis I used this and loved it. It does take the edge off your pain.

The real key no matter what your age is, is to ask for a pediatric dose which is a 50 mg pink chewable tab and take one or 2 daily. My PCP finally gave me a RX.

Pain clinics use anti-convulsants all the time for pain.

Google: Dilantin pain

You will come up with lots of information.

Here's some information I posted about Dilantin:

http://flash.lymenet.org/ubb/Forum1/HTML/028338.html

If your forehead hurts, perhaps trying a hot gel pack from Wal-Mart that you heat up in the microwave might help along with meds.

Mine is called; Ice/HEAT Reusable Gelpack by Trufit. I use to could purchase just the packs for a few bucks, but now they make you purchase a blue wrap thingy which you don't really need.

I wrap my gelpack in a bandanna.

For me, it took antibiotics to get out of pain.

Hope you start feeling better soon.

Take Care,
Jan