This is day 3 now of persistant/severe headaches. They are getting severe enough for me to resort to tapping into the tylenol 3 (codeine) I have. Which I hate to take, because it makes me feel weird
And last night, It got bad enough in the middle of the night for me to resort to taking one of my percusets (oxycodone). I only have several of those left from the spinal tap I had a couple months ago. I ration both meds very carefully and take as last resorts.
However, the last few days I have needed to resort to taking these~ esp the codeine.
Needing the percuset last night is especially bothering me. Not to mention, it only worked for a short while and now I am back again with a severe headache.
I dont have a stiff neck (yet) and the fever is not too high (yet). I am still running the usual temp of 100 like I have been doing for the past 10 months. So, not much of an elevation w/ that yet.
I am drinking plenty of fluids.
Over the past 3 days, I am noticing myself becoming more and more cranky also. Last night, I wanted to go to bed at 6 ~ I didnt, but that was odd for me to desire to just go to bed that early.
I am cranky and impatient; sensitive to noise and a little to light (not too bad yet, but a difference).
At what point does one go to the er?? The headache got to feeling close, but as bad as the headache one gets after a spinal tap. I had the spinal tap, but that was a couple months ago~ so, that is not the reason for this headache now.
Has anyone developed meningitis w/ lyme?? Or anything else like that??
If so, does it take a few days to develop?? And if, so also~ what else do I look out for??
I am so sick of doctors and tired of them discounting me~ so, I hesitate going in.
I have an LLMD appt for the 27th and am trying to hold out til then~ because the other docs I have seen have told me I am cured after the 30 days of doxy and wont listen to me when I clearly say, I am not better.
I hope I am articulating myself clearly enough and making sense. I dont feel well so not sure if I am typing this and expressing myself well or not.
Thanks for listening and for the input; it is appreciated.
Posts: 25 | From MD | Registered: Sep 2007
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posted
If the pain gets severe enough or other symptoms start, an ER trip might br warranted. Otherwise consider visiting your regular MD before your scheduled LLMD visit.
What triggered the HA? Is there a pattern to the triggers?
I had chronic HA pain for years until I learned my vitamin 1,25D levels were high. Avoiding dietary vitamin D and light exposure greatly reduced the pain severity and frequency for me.
Posts: 727 | From USA | Registered: Mar 2006
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ByronSBell 2007
Unregistered
posted
Might want to run some MRI's just to make sure.
I've had a chronic headache for over 2 years now that has never gone away. I ran all the tests in the world out there and everything is normal so I just have to live with it becasuse it is probly caused by the lyme toxins
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I can't think of anything that might have triggered them; I just woke up Friday am with it and they have stayed with me since then. I have not had headaches this bad since last Jan. And well, of course after the spinal tap a couple months back.
I do get quite a lot of headaches yes, since I have come down w/ Lyme....but not this bad. This is bad enough to resort to taking the more powerful pain meds; as motrin just doesnt cut it the past 3 days
It is causing me to feel urges to cry and scream at everyone (so far, I have been able to control that)....I just feel so much pain with it, it is causing so much crankiness which is uncharacteristic of me. I hope I can continue to control the cranky aspect. I am trying to keep a smile on my face, but has not been easy the past few days.
We have company here at the house~ so, it is essential for me to remain in control of myself and not burst out crying. Know what I mean??
Thanks again for the input; it is appreciated.
Posts: 25 | From MD | Registered: Sep 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
What were the results of your spinal tap?
Why did they do it, anyway, come to think of it? Neuro's suggestion? (they're only 20% likely to find lyme, FYI -- though it's a bit late for that! most neuros don't even know this and act like it's the final word in finding lyme. DUH!!!)
Sometimes, however, taps can yield useful signs of lyme infection -- like elevated proteins (sign of infection). Like increased opening pressure. And they can help to rule out other things.
Make your neuro GIVE you the whole report. Not just HIS take on it!!
I'm so grateful you're going to an LLMD.
What often causes these unending headaches-from-he11 is babesia. Usually, this is something most non-LLMD's have never heard of, or consider "extremely rare." Yeah, right. NOT.
Extreme headache was my MAIN presenting symptom. Along with horrible noise sensivity. If someone slammed a door somewhere, I'd jump about six feet outta my chair and be flooded with adrenaline and my stomach would knot up with stress!!!! Couldn't follow a tv show plot. We're not talking something complex here. Try like 'The Beverly Hillbillies.'
Hah!!!
Pain meds don't really help the headaches. Nothing much would help except Relpax..it will bring much-needed blood back into your head, which is likely suffering from hypoperfusion (lack of decent blood flow). Ask your duck for a sample or two since they're quite dear to pay for. Please be sure to be clear for any heart concerns first.
Have GOOD faith that your LLMD will test you and test and get to the bottom of this. It is really a typical presentation of neuro lyme, or "neuroborreliosis." Your earlier treatment (by a duck, prolly) wasn't long enough or strong enough. Your LLMD's treatment WILL be!! You'll get your life back.
There will be herxes and even likely increases in pain, but it will taper as you get well. Spaces between horrid headaches will get longer and longer. I PROMISE!!!!
Hang in there. It does get better!!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
sick, I remember some of my early headaches. They were scarey. This phase didn't last long and for several years now I only seem to have headaches that come on daily for a week. Ibuproben(sp)seems to help with anything inflammatory.
My regular pain meds won't touch the headaches. Drinking lots of water is also good if headaches are from toxins running around in your head.
I remember some pains I had in my head that were downright frightful. I would think I was having a blood clot moving in my brain and I would be dying.
You know when things are frightening in your body. A trip to ER is something to consider when things are out of control. I just came to accept that part of my illness was a toxins & inflammation in brain.
But you need to do whatever you think is right for you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
This is one of the reasons I believe I had lyme back during high school (that was only 5 or so years ago for me) because during most of my high school career I had a headache. EVERY single day I'd have a headache. It was bad, too. It got the point where I went to a "duck" about it and they just told me to take 3 to 4 ibuprofens and not to worry about it. It got the point where I worried I had a tumor. It was the only symptom I had back then except for slight dizziness later on, but it still was painful and annoying.
Later on, this year, I had an MRI done, and that came back fine.
I can't really help as I have no advice, though, but I know what it's like.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I can't give advice on when to go to the ER, beyond if the pain gets unbearable then go to get the pain meds you need.
A couple thoughts on the cause of the headache though.
Tight muscles can cause headaches. Especially in the neck and shoulder area. The best way to tell is to have somebody massage you and see if pressing on a tight muscle in one area makes the headache worse. You can also do that yourself.
I discovered recently my headaches were caused by a soy allergy. If you start having regular headaches, then an elimination diet is a great way to find out if there are food triggers.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Do you know what your opening pressure was when you had the LP? Increased pressure can cause constant, severe headaches.
My kids have pseudo-tumor cerebri. They take Tramadol/Tylenol or Fioricet on a daily basis. Relpax does help some of the headaches. On a 1-10 pain scale, they are normally at 6-9. When the headache gets to a 9+, they have a LP.
Jake & Jordan can't remember when they didn't have a headache. The headaches started in 1999 or earlier.
We haven't had any luck taking the kids to the ER.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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