valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My son has had a constant headache for 6 years. Long story.....but still never properly treated for babs. Of course, no abx combo has nudged him to any improvement in the two years he has been treated. I think it's babs.
Llmd wants to first add flagyl to his IM bicillin and ketek for 10 weeks before going the babs route.
Yesterday his llmd suggested imitrex.
Anyone use it for a constant headache?
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
posted
My son tried imitrex and it did not touch his headaches. He is now being treated for Babs along with the lyme. He would be pretty good if the headache would go away.
Amy
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
| IP: Logged |
posted
My kids (19 & 15) have had a constant, severe headache since 4/1999.
Migraine meds didn't help. Tramadol/Tylenol takes the edge off. I would try Imitrex, it works for a lot of people.
My kids have Intracranial Hypertension (pseudo-tumor cerebri) and I believe that is the cause of their headaches. Lumbar punctures do reduce the headaches.
Last week they started heparin (Lovenox) treatment to see if that will reduce their headaches.
Good Luck!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
posted
I had classical migraine with aura. I would have attacks that would leave me numb in extremities and the face, my eyesight would be affected, vomiting, etc... etc... While imitrex helped a bit it usually wouldn't control it completely.
It eventually stopped working for me at all.
The only thing that has helped me is aggressive babs treatment with Mepron/Zith then subsequent antibiotic treatment with flagyl thrown in the mix a week a month.
I am now down to 2 weeks treatment a month. Only two migraines last year and it was while herxing - Yay!
Make sure he is staying away from MSG which is in everything....sometimes they call hydrolyzed proteins...it is in a lot of canned foods and soups as well as chips.
You just want to make sure his liver is really able to function and clear stuff and that his gut is working as well as it can under the circumstances.
For me that equated to only water for a year...no junk drinks at all. No junk food.
Hope he finds relief soon...I personally would stay away from Imitrex - especially with all of the possible side effects and permanent damage it can cause to some people's hearts...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
| IP: Logged |
posted
You know, I had migraines all my life until treated for babesia. However, about the same time as my babs treatment began, my heart started racing and hasn't quit since.
I have to take atenolol for the tachycardia, even tho the babs is under control.
I'm telling you this because I'm not sure if my migraines went away because of babs treatment or the atenolol.
So maybe you could ask the dr about atenolol? Or is your child very young? I don't remember. I rarely have migraines anymore, but if I do, Imitrex is my "drug of choice."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thank you for the responses. If the flagyl added to his ketek and bicillin shots doesn't budge something then in April he will do a babs protocol. It is frustrating for me to see this delay when my head/heart tells me this is babs headache - fatigue - myalgias and I feel like we are just postponing the inevitable.
He was on mepron by itself for ten weeks (last year at this time) and had a wicked response......bedridden......lights out. That llmd, though, would not pair mepron with zith or ketek and then..... since my son was not accurate in describing his reaction (always stoic) - he was taken off mepron.
Now I worry that these parasite bugs will be resistant to mepon again.
As for the imitrex......I just made an appointment with a chronic fatigue /fibro doc who will help him with pain management......my stoic son. Tramadol - prescribed by our first llmd - never could touch those headaches.
Lymetoo - what is atenolol? Is it imitrex?
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
posted
Atenolol is a beta blocker used for high blood pressure and/or tachycardia. It is often used for migraines when nothing else works. Wish I'd found it about 40 yrs ago!!
How old is your son?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Evenin' valymemom!
I too have headaches that render me unable to think.
Imitrex definitely helps.
However, I found it to be somewhat short-acting.
It helps quickly, but seems to wear off sometimes the same day.
Relpax takes a while longer to kick in, but affords relief for a good bit longer, at least for me - sometimes up to a couple days.
These meds are vasodilators. Take sparingly -- NOT like aspirin! Never more than a couple a week.
I just learned today when refilling my Relpax: DON'T TAKE IT WITH BIAXIN XL. Drug interaction problems. In fact, I'm gonna post that separately. I don't think Imitrex has that same problem but these meds need checked out with some of the antibiotics we take. When my head is roaring, drug interactions are about the last thing on my mind.
An aside: I did have enormous relief from headaches after a six-week stint on Flagyl. Not DURING, mind you!!! AFTER is the key word here. So I will be hopeful that it helps your son, as I know it's hard to watch a kid suffer with head pain.
Best of luck and hang in there!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I take Elavil as a prophaltic (preventative) for headaches and found Zomig works for my migraines.
I think the Elavil has controlled the headaches, it used to be I constantly had a headache and now they are gone. Still get a migraine every now and then.
The Elavil increases your appetite which increases your weight. Hopefully, I won't need to be on it forever.
It also is used to help with chronic pain and sleeping issues. It's help with pain, but doesn't seem to help me sleep any better.
Posts: 441 | From USA | Registered: Jul 2004
| IP: Logged |
Fiorinal, Fioricet, and other Butalbital Compounds for Headaches and Migraine. Fiorinal contains aspirin and Fioricet contains acetaminophen. They both contain butalbital and caffeine. Codeine is sometimes also added to this combination. Butalbital, a barbiturate sedative, is habit-forming., so it is an Rx. Butalbital, a barbiturate sedative, is habit-forming. These medications should not be used on a daily basis because dependency on them can develop.
Regular use, more than 2 days per week, can cause rebound headache, which may not respond to usually effective acute and preventive treatments. I take them on an "as need" basis.
I believe my headaches were due to babs as well, and this works for me...like a charm...I don't wait to see if it is going to go away by it's self...If i do I find it's a big mistake. I get them so bad that even my hair hurts. I get nauseus and have to stay in a dark room, with no sound, and bury my head in my pillow and rock.
I used to think a vice-grips would be the only thing that would do the trick some times...until I found out about Butabital!!
-------------------- "Life is mostly froth and bubble; Two things stand like stone; Kindness in another's trouble; And courage in your own." TTFN -laserred- Posts: 493 | From MidWest NorthWoods | Registered: Jan 2005
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thank you everyone for your informative responses. My son has an appointment with a new( lyme learning/treating) primary care doctor who got involved in lyme because he found so many of his chronic fatigue/fibro patients test positive for lyme thru MDL or Igenex.
Having a good primary who is interested/on board with the infections will help. Now my son might get some help with pain management. (One of the first drugs a neurologist put him on was elavil and it didn"t budge any symptom.)
Last night we had a good conversation and my son told me that it is his neck pain that is most excruciating. (I was not in the exam room the entire time when he shared his log with our Long Island llmd at his 2/1 appointment but when I went in to ask my questions.......our doctor was suggesting the imitrex.
Now we have lined up an appointment with the new primary and I am feeling more positive that my son will finally be in the hands of two caring doctors.
Again thank you to everyone who has commented on the headaches from hell.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
posted
I herxed horribly on Mepron too. Ended up in the ER with one of the worst migraines I have had in my entire life. It kept circling around to the aura. Normally in the past the migraine would come - the aura first and it would last 20-30 minutes. This time it was relentless.
They shot me full of pain killers - it went away and drugged me to the point that I couldn't do anything but sleep. At that point around 3 p.m. that day the aura started again.
I made it through that day...really thought I was having a stroke. That was January 2nd of 2005 - I have only had two migraines since and they were not half that bad and were while I was on the flagyl.
For me imitrex would end the cycle of a migraine for a little while but I felt by ending the cycle I was left with rebound migraine hours later and the cycle would start all over until it ended.
If your son herxed while on Mepron then I think the doctor should put him back on it WITH ZITH. The zithromax I have heard will keep the babs from becoming resistant to the Mepron.
I feel for your son because of all the symptoms of these crummy infections the migraines for me have been the most dehabilitating. Trying to lead a somewhat normal life when you are driving down the road and suddenly can't feel your hand, your face, your tongue and then you can only see as if looking through prizms or without periferal vision is just extremely scary.
Take care and keep us posted...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
| IP: Logged |
posted
There is a difference between pressure headaches and migraine. I had both. I had the pressure headache for years-- my permaheadache. A neurologist (who suspected Lyme but dismissed it when my ELISA was neg) prescribed diamox, which is a kind of brain diuretic. It helped immensely. After I was finally diagnosed with Lyme, I was able to discontinue diamox after a few months-- the pressure headaches were gone. What a relief.
I had migraines when I was young, triggered by solvents and air pollution. I began having migraines again late in Lyme, unrelated to those triggers (no exposure), and lately they have been severe. I believe that in my case, they are because the abx I am on now are getting at some keet colonies in the lower part of my brain. The headaches seem to be linked to the remaining symptoms I have, all of which are the kind of thing that originate in the same part of the brain. In between, I feel great. So I am hopeful that in the not too distant future, those will resolve too.
About migraine meds: our body chemistries are different, and what works really well for me might not for you, and vice versa. Imitrex and maltex did not work for me, period. I tried Relpax and it was like a miracle, stopped even my worst migraines short. I'm not recommending Relpax-- the point is, if one med doesn't work for you, don't hesitate to try a different migraine med until one does work.
By the way, these meds may work primarily because they act on the underlying neurological activity in the brain that results in migraine. That's why they work best if taken at first signs. Recent research has found that the engorged blood vessels are a response rather than a cause-- early on, there may actually be a deficit of blood, and this is why the engorgement happens, trying to compensate.
-------------------- ..." ...almost basically together situation." unknown quote from somewhere Posts: 441 | From USA | Registered: Sep 2001
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
To add one more thing to the headache mix, Topomax taken at night, prophylactically, can help to reduce severity of headaches. Start small, build up, see if it helps.
My LLMD tried me on Diamox but it did not help at all. He said it helps probably 50% of his Lyme patients.
Don't be shy about asking for samples of some of these meds, especially the Imitrex/Relpax meds, which are REALLY pricey. They almost always have samples of those. But use them VERY sparingly and check for drug interactions.
Good luck banishing the headaches from hell!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
My kids (15 & 19) have increased intracranial pressure which causes a constant headache. We are trying to find the cause. They have started treatment with heparin to see if it helps.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Trying different meds - that seems to be the message and we will take that to his new primary.
Early on we worked with two neurologists who had him on topomax and the elavil and neurontin and gabitril (sp) and many more. We went to Johns Hopkins pain center and they put him on something that also didn't work......two years of neurologists and chiropractor for fibro pain points and then you know the drill......told to see a psychiatrist since nothing was helping.......and since nothing helped he stopped seeking meds and is a saint living with pain.
I am going to hope that the flagyl and some strong prescribed headache medicine from this new primary will help.
I learn so much from all of you but can't keep it in my lyme brain.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
Symptoms of increased intracranial pressure (also pseudo-tumor cerebri):
headache transient visual obscurations or blurring tinnitus or "whooshing noise" in the ear pain behind the eye double vision visual loss pain with eye movement
My kids do not have the vision problems but they do have blurred vision and pain with eye movement.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
| IP: Logged |
posted
Everyone has very different bodies and different needs. For me I have discovered that the migraines were a symptom of something else.
I am a strong believer in trying not to cover up symptoms - yes, I know that migraines are debilitating and if they are happening everyday then absolutely I think it is wise to medicate them.
I do believe a huge part of getting better though is to really listen to your symptoms - when they start to be covered up by medications you can lose sight of where you are in the treatment of tick borne illness.
My husband took an antiseizure med prescribed for nerve pain after his diagnosis for lyme. I kept telling him his symptoms were babesia...he stayed on the medication which covered up the symptoms and by the time the pain was so great the antiseizure meds no longer worked the Babs was raging.
Just be really careful with medication. It taxes your body even more having to process it, it can mask symptoms so you lose track of the progress you are making.
I realize some symptoms just can't be lived with -For me I chose to listen very closely to what my body was telling me. Popping another imitrex for a migraine with aura that was circling around and around was not the answer. My migraines have a definitive cycle that has to complete. Now I barely get them because I treated the lyme and coinfections extremely aggressively and the load is now down.
I hope your son finds relief soon.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
| IP: Logged |
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I get very bad headaches, too, and they were actually my first symptom when I got really sick back in 1997. I've gone through a lot of meds and most seem to work for a while but either not work for more than an hour or two or lose effectiveness over time. For me, Imitrex had too many side effects so I didn't use it for very long but I've used other meds in the same family and they have been helpful but I have to switch after 6 months to a year because they lose effectiveness. Right now I take Frova, a new migraine med. Before that I was taking Maxalt and before that it was Amerge.
I've also just started on Topamax as a preventative medication and that does seem to have reduced the number of headaches and their severity although I haven't been able to tolerate the dosage my neurologist wanted to work me up to due to the side effect of tingling and numbness in my hands and feet (really bad, worse than any I've had from Lyme) and the dosage I'm on now isn't working the greatest lately. Most likely the next thing my neuro will do for me is increase my Neurontin dose (I'm currently on Neurontin just to help me sleep but it can also be used for pain management).
The way my neurologist explains my Lyme migraines (which is what we believe I have) is that it's a nerve thing, that the nerves are over firing and becoming really really sensitive so that over time it just gets worse and worse. She is a great Lyme-friendly neuro and I really lucked out - really compassionate and said that she thinks Lyme is one of the worst things to deal with in her opinion because the pain is just horrible and unrelenting.
For me, I'm not sure what the headache is from. I know I at least had Babesia in the past and I highly suspect I still have it (never been positive on testing so that wouldn't help me with the determination). I've been treated for Babs a lot (total of over a year over the course of my treatment with the longest course lasting about 5 months).
I really hope your son can find some relief! Lyme headaches, whatever the cause, are really awful to deal with.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
My mild hbo chamber got entirely rid of my crushing lyme headaches, that began 2 years after the bullseye and were twice a week, 24 hours of misery lying in bed trying not to throw up.
I never get them anymore. Been years.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic