My question is concerning my daughter. She just turned 18 last week. She had frequent headaches before this illness, but did not think they were migraines.
After a tick bite and severe flu-like illness one yr ago she has had a horrible constant headache resulting in hospital stays and ER visits.
Basically nothing has relieved the pain, which leads me to believe it is not a regular migraine. What I believe helped the most has been flexeril, neurontin, diflucan, B12 and supplements, but it has never gone away.
Herxing on malerone right now, the pain is at the worst. LLMD said go to ER or PCP.
Have lost faith in the ER, but may end up there before the weekend is over to see if they can at least knock her out so she can sleep!
Asked PCP for referal to pain management Dr because I heard they are not afraid to use the meds every other dr is either unable to prescribe or won't. But he is sending us to a headache specialists - neurologist #4!
Is this a migraine?
Or is the pain caused by nerve damage?
I read you can get permanent nerve damage from TBI. How do you know? Any info I could give the headache specialist who is probably lyme illiterate, that might help?
Thanks in advance for any advice or info!!!!!!!!!! MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Up! Anyone?
Posts: 1111 | From Colorado | Registered: Oct 2006
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quote:Originally posted by MommaK: Herxing on malerone right now, the pain is at the worst. LLMD said go to ER or PCP.
Until I was treated for babesia I had killer migraines. Because you said her pain is worse now, then that tells me that the babesia is what is REALLY causing the pain.
Did your LLMD suggest that she back off the malarone??
Have they tried Imitrex, or the standard migraine meds??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi MommaK,
So sorry your daughter is in pain, headaches stink! You can have different kinds of headaches with lyme, so I hope doctor number 4 can help you figure this out.
I have been to the ER for headches also, I feel the same as you..have lost faith. The ER trip did help me to get through the pain though. They ended up giving me Demoral and lots of it, killed about 75% of pain..Migrane meds didn't work.
My Mom has nerve damage, she has been sick a long time, her LLMD told her the nerves don't come back and it results in less pain, that is my understanding and I am not a doc.
I also have some nerve stuff going on which I think is nerve damage. My funny bone..well actually it's a nerve, has no feeling there anymore..right on elbow..and I have no trigger points on left side of my body, only right. I am glad for less pain though!
Hang in there and hope this passes soon.
[ 27. January 2007, 12:01 AM: Message edited by: Beverly ]
Posts: 6641 | From Michigan | Registered: Jun 2001
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bettyg
Unregistered
posted
momma, thoughts and prayers headed to your daughter/you!
does your daughter wear prescription glasses and possibly very LOW vision?
i have low vision; thick lenses, and EVERY TIME THE "AXIS" gets off in my lenses, i get terrible migraine headaches!
i go to pearl vision and they get them adjusted again. in fact, my eye numbers are on their BACK WALL where they work behind closed doors since i'm there so OFTEN for this specific problem.
hoping you find the cause and HELP for your daughter.
have you done a search using past posts, etc.
if not, go to top...search is under NEW POST
type in migraine headaches MEDICAL TOPIC ONLY ANY DATE....make sure you EDIT MY PROFILE first towards the bottom where you chose the LONG TIME vs. default for search purposes!
leave membership no. blank, and hit enter send! hope you get a lot of posts you can read from others and WHAT HELPED THEM or THE DIAGNOSIS WAS!
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
MommaK, my daughter is 18, and migraines where the first symptom she developed as we look back on this disease. With that came depression, anxiety, and OCD and night terrors. Such a pretty package, huh? She has bartonella, that much we know.
We thought it was just mental illness passed down from relatives (certainly wasn't ME!!) She was ready to live with it, but then the rest of the body started having mucho pain and illness.
The migraines have subsided quite a bit with antibiotic treatment. She still has transient cranial pain, and an occasional migraine, but they don't land her in bed any more. Vicodin is the only thing that will help.
I remember taking her to the ER and getting a lumbar puncture, etc. They gave her demoral and she said it was the first time she was pain free in years. She said when she goes to heaven she wants it to feel like that.
Tell your daughter we are sorry she is in pain. It's a nasty disease that robs our children of life. Vicodin may give her relief.
God bless Kelly
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
What kind of pain? I had constant deep seated burning ache in center of head 11 and 1/2 years. Now gone since November 2, 2005.
Posts: 290 | From ohio | Registered: Dec 2005
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We do have an appt with headache specialists in two weeks, much sooner than we could have gotten into a pain specialists.
If headache neuro #4 won't help with pain, I will ask him for referal to pain dr!
To answer your questions:
TuTu,
We received written info about stopping Abx for a couple of days when bad herxing from llmd at first appt. When she first had bad herx on malerone (headache, nausea, felt like someone was repeatedly hitting her shins with hammers) she stopped for 3 days, which gave some relief and then went back on malerone.
Had llmd visit and llmd did say because of her wt she would be OK taking 3/day instead of 4/day. I think he said she shouldn't herx on malerone and should try and tough it out. Is malerone an antibiotic?
For now she has kept up the 3/day dosage. The leg pains are gone, but the headache is as bad as ever. Rx was for 28 days, guess I should call and ask if she should finish all meds or stop at 28 days since she is only taking 3/day now.
She has tried Imitrex (made pain worse) and about 6 other triptans. DHE-45 makes her very sick. Took topamax for several months and then other similar meds. Last neurologist said she was "just one of the unlucky few people who has constant severe intractable migraine that doesn't respond to meds". Wonder if those other few he has seen ended up being dx TBI or should be?!!
He said she could try narcotic pain patch when we came back, but when we did we told him about the TBI dx and he wouldn't rx anything for pain! Wants her to see head of infectious disease for 2nd opinion! Yeah, right!
I think you are right about the Babs being the cause. I think many of her main problems are babs related! The strange bloodwork makes sense the more I learn about Babs! Maybe we need a Babeosis specialist before a LLMD!
Beverly,
I remember our 2nd ER trip she got demerol & phenegran straight into her vein! She always asks for that again because it did bring the pain down some and fast! Once she got a rx from an ER dr for the tablet form of the two mixed and that helped. Too bad you can't make appts with the ER dr's that did help!
Mr brother suggested that since I threw away the empty bottle, that I use the info on the EOY pharmacy printout to show she was rx it before and ask again! Won't hurt!
BettyG,
No she is my only child with perfect vision. She did have a very thorough eye exam when this all started.
Thanks for the search help. I have been searching here for all kinds of things these days. Best source I've found! Will have to look into the "long time vs default" thing though.
Kelmo,
Wish I had more time, will post more later. We seem to have much in common! See above about demerol!
Spookydew,
She describes the pain as stabbing and throbbing in head and neck. The worst spot seems to change places like left side, or left eye.
Thanks all, will check back later!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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posted
Hi! I'm also having a burning, sometimes pressure pain on the crown of my head...often feels as it's going deeper into my brain. I haven't begun taking anything again (was on doxy last year, but seems the dosage wasn't enough...or else it's not Lyme) Now, yesterday, I got a jabbing, scratchy pain in back of my head (near neck almost) whenever I turned my head...this resulted in being up all night with my head feeling full/infected' I have had two months of night sweats, low-grade fevers that come on most every day...with exquisite chills...Pains all over..shoulders, back of neck, pain in the palms of my hands and feet...everywhere! The pain and chills come on toghether, and then can disappear and I can have a good day or a good half day. I am also wondering about Fibromyalgia, because I have many sore-to-the-touch points. OH, have also had pain in the glands under my arms, and pain in my rib cage and even pressure aches around my heart. If this makes sense, feel 'microbial' around my chest area. I've been sick for a few years...I also have Addison's (adrenal) disease, and have been exposed to mold...though I did have Lyme 5 yrs ago, in which doxy seemed to clear it up. Whew! And that's not all folks! Any ideas?? Does this sound like Lyme, do you think? {{Hugs}} to all of you, going through similar struggles!
Posts: 2 | From Milford, CT | Registered: Mar 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My heart is breaking for your daughter. I know what I'm going through and can't even imagine how a child deals with this.
For me, I had "head pain". I never knew what to call it since it wasn't as a classic headache and didn't quite seem the same as migraine, which I use to get earlier in my life.
I too saw four neurologists BEFORE my diagnosis and one did an EEG and said I was having mini seizures that he felt were "migraine disease" but the pain could come up anywhere.
I have no idea if he was right and years later, I found all these symptoms to be lyme, bart or babs for me, but i'm having a hard time figuring out which goes to which anymore.
Too much brain fog. Do let me know if you find something that helps your daughter. I use to have percoset for when it was either the ER or something to take the edge off, but then it would give me rebound head pain, so that never worked.
Always interested to hear how others deal with these issues. I'm in bed on a heating pad and laptop as I recline. But nothing seems to work so keep taking my antibiotics and hoping that something will snap eventually.
GOOD LUCK!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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