Hello again everyone. My mother (thank goodness for moms) has finally convinced me to seek treatment for lyme disease. My question has to do with migraines. I have taken every medication under the sun for both prevenative and pain relief after a migraine starts, but the triptan class of drugs does not help. I recently went to our town's emergency room for treatment for a migraine, which I do on a fairly regular basis (1-3 x per month) and was told that I was having too many migraines for them to give me the normal injections that I get. (Nubain and phengergan), and was told that they wanted to give me an IV with compazine and toradol. I tried to explain that in the last 12 years that I have lived with these migraines, the IV was not going to help. They sort of shrugged their shoulders and said that was my only option. I left before they could give me the IV. What I want to know is, has anyone here been labeled by their family doc as a "drug seeker?" I am so frustrated by the fact that the docs just assume that all I want is the drugs, when in fact all I want is to not have migraines anymore. Does anyone have a "magic" pill that they have taken for migraines, and if so how long did it take for your doc to find it? Also, are migraines indeed an indicator of Lyme? Another question that I have is has anyone ever been sent to the "pain clinics" for treatment of migraines? Thanks in advance for everyone's input.
Posted by shizuko (Member # 8213) on :
I am sorry that you get migraines that often.
I am pretty sure you have, but have you seen a neurologist?
Neurologists usually treat migraines.
Sounds like your mother suspects you have Lyme.
What other symptoms do you have?
Anyway, I don't get that severe migraines or get ones that often, so I cannot be of much help to you as to what would help.
Anyone?
shizuko
Posted by shizuko (Member # 8213) on :
Hi, again.
I just remembered that my neurologist made me take a high dose of Magnesium and Vitamin B2 supplements to prevent migraines.
shizuko
Posted by cactus (Member # 7347) on :
So sorry to hear about your migraines. I too have terrible migraines, and no magic pills.
However, I have noticed that with treatment for Lyme and, more specifically, for babesia (a co-infection of Lyme), my migraines have lessened in frequency somewhat. I have had months without them for the first time in many years.
Most of the Rx drugs I've tried have not helped, although Axxert seemed to help with a few, then stop. I do find that when my neck/shoulder pain & stiffness is more intense, I can more likely plan on a migraine. Sometimes catching that part early & treating with heat and massage help a bit, I think.
Also, there are dietary triggers for me, which I didn't want to identify or face for a long time...
I hope you find some relief soon. I do think if it's Lyme you might find relief with treatment. Listing your symptoms might help everyone here to help you more...
Yay for Moms!
Posted by Aniek (Member # 5374) on :
MMMMR,
Love the name. My Mom made me get tested for Lyme
I don't know tons about migraines, but my understanding is that the best treatment for migraines is prevention. This is done through determining triggers and medications that prevent or reduce the intensity of migraines when they first begin.
It seems you've tried the meds. Have you tried elimination diets to test for food triggers?
That said, you do have the right to pain medication when you need it. An ER is really not the place to get that treatment, because they are worried about drug seekers.
A good pain clinic should be able to help you with the pain control, while you try and figure out the cause of the migraines elsewhere. A good pain doctor knows and understands the new pain drugs better than anybody else.
But, there are also bad pain clinics and pain clinics that are terrified of investigation by the DEA.
I'm not saying you don't have Lyme, but the headache resources might have more help on this symptom.
Posted by savebabe (Member # 9847) on :
Hi there!
Sorry you have the severe headaches. I had them for several years before being diagnosed with lyme and babesia. I tried all the migraine medications, but no luck. My llmd told me that these class of medications do not work on lyme/co-infection headaches. My suggestion would be to seek out a llmd, and get all the proper tests. Only treatment and eradication of the parasite and bacteria will alleviate the pain. Good luck.
Posted by wrotek (Member # 5354) on :
I think You may find this interesting, tell me what You think
I don't know your age. My daughter started her journey with stomach and migraines. She had one preventive that worked for her for a while. Topomax. She had to see a neurologist for that, however.
As the Bartonella (that's what she has) started to take root, other problems came up. The migraines came back because the bacteria get in the brain.
Since starting treatment for the bartonella, the headaches are still there, but they aren't as severe.
I'm glad your mom made you register. It would be wise to be tested for Lyme and co-infections, at least. If you suspect lyme, see an LLMD first. If not, go to a neurologist.
Thanks for checking in.
Mother of teen with bart.
Posted by Lymied (Member # 6704) on :
Hi MMMMR -
Sorry to hear about the migraines. For me this has been the most disabling feature of lyme and tick borne infections. Only now after treatment for two years have my joints started aching. The little boogers went straight for my brain first.
I had migraines for twenty years before my diagnosis. I will never know if the lyme just made the migraines worse or if it was the lyme the entire time.
No migraine meds worked for me.
The only thing that has lessened the amount and severity has been treatment for babesia with mepron and lyme and ehrlichia treatment with antibiotics...including flagyl.
My worst herxes with migraines leaving me only able to see snow were while on Mepron and Flagyl. I literally thought I was having a stroke while on the flagyl the first time.
They got better with every month of treatment and so far this year I have only experienced two and they were shorter and more easily managable.
I feel for you. If you do have lyme please get aggressive treatment. It might be tough getting through the herxes but it is worth it.
Posted by shazdancer (Member # 1436) on :
Yes, check into babesia. I was getting one migraine a week, and most days in between felt like a "near headache." After babs treatment, migraines have been less than once a month, and pain-free head in between. Since I'm perimenopausal, one hormone-related headache a month is certainly normal.
Hope you feel better soon, Shaz
Posted by lymie tony z (Member # 5130) on :
MMMMR,
You would'nt happen to be Nancy's DD would you?
If you are please answer the PM I sent about these headaches...
I used to get them as well.....
One thing to be very cautious of...TORODOL...this is merely another anti-inflam and when they've given it to me as a "pain killer" my lyme symptoms became exceedingly worse... It would initially handle some pain but then turn on me....and increase my symptoms and severity!
I also had a terrible time with Ultram...would cancel pain for six hours but...OH BROTHER after the six hours were up did I ever have a migraine from hell...
Topomax...or topiramate is sopposed to help migrains...a neurologist should prescribe it for you...
Also food allergies or "triggers" are very real like some cheeses,chocolates,nitrates....
You may want to try a couple cups of coffee with a couple advils... and maybe a little peanut butter......
I know it sounds weird...but hey...what about lyme isn't weird...??
Just try it! If it does'nt help you lose nothing!
Stay away from grapejuice! A lot of fruit juices give me bad headaches like a hangover....
Good luck......zman Posted by Lymetoo (Member # 743) on :
I used to have migraines. There were times I began each day with one. They were murderous!
Now after Lyme and babesia treatment, and plenty of mangosteen juice thrown in, no headaches. RARELY ever!
And if I get one, it's a non-issue! Can't believe it!! Posted by Michelle M (Member # 7200) on :
Hello there, MyMom!
Oh, you poor dear. I am so there with you. Sometimes I feel like I live inside my head, and everything else comes after 'how bad does my head hurt today?'
Now, about the 'magic pill':
There ain't one.
Here's why: If you have lyme disease, and possibly babesia, that is why your head hurts. Nothing is going to be of much help, except maybe temporarily.
Aspirin, even the heavy duty ones -- a joke. I usedta eat them like candy. Wonder I gotta liver left. :-) Pain pills don't touch it. In fact, headaches were my biggest symptom of lyme (err, well, besides that teensy little tick, which I forgot about). REALLY BAD headaches, before your feet hit the floor in the morning.
I went to several doctors for the headaches. Finally, one did an MRI, which revealed a lot of brain lesions consistent with lyme disease. Everything else fit and I tested positive and there you go. I didn't have a brain tumour after all.
However, even lyme treatment of almost a year didn't fix it - though it helped. Because I was way too smart to get tested for co-infections, and I had babesia WA1 all along. People with bad, relentless headaches are really likely to have babesia!
After starting babesia treatment, my head felt the best it had ever felt in years.
I relapsed, but only did two months due to insurance. Getting ready to get back on the Mepron train.
If this is your problem, it is NOT going to go away with band-aids of pills or shots or pain clinics. It has got to be "gotten all over" with aggressive lyme treatment that you commit to and stick with. Then a day will come where you'll think, "Omigosh, my head doesn't even hurt at all."
I swear.
Post if we can help!
Michelle
Posted by groovy2 (Member # 6304) on :
Hi All
I used to have killer migraines-- for years non stop--Ouch- After I started Babs treatment- ALSO - the migrains have stopped - -AAAhhhhhhhhhhhhhhhhhhhhhh--
So look into Babs - From my unoffical tally it looks like atleast half or more of the folks on LN have babs also--
Threw the years nothing ever helped me with the migrains-- Once I took some really strong pain meds-- made me numb but did not even touch the migrain pain---Jay--
Posted by clpgotlyme (Member # 7875) on :
Hi, welcome to a not so fun club-Lyme and assoprted other TBD's that cause migraines. I have had migraines (hormonal) since age 13.
But, after being bitten by a tick in 1992 they become much more frequent and disabling. Lyme treatment has helped a lot, Bart treatment a little more.
I am getting ready to start Babs treatment which I hope will help more.About the ER: you might try getting a Dr.s note about what treatment you need at the ER.
Sometimes I get a Dr. who is a PIA,sometimes a compassionate one. I always say I am allergic to Toradol as it gave GI bleeding after an injection once.
Watch out for Compazine, last time they gave me that I got very anxious. I now insist on Phenergan and a narcotic.I have been denied this only once.It helps to take someone with a strong personality to intervene if necessary!
At home I take amerge and Phrenilin Forte(same as Fioricet but no caffeine)together. The Phrenilin really helps me sleep and relaxes shoulder muscles. Good luck, I hope you are feeling better soon. Cindy
Posted by My Mom Made Me Register (Member # 8998) on :
Hey there everyone. I am pretty sure that it is lyme, mom, dad, and 2 of my brothers have been diagnosed. Here are my other symptoms: sore and swelling joints, extreme fatigue (sometimes so bad I can't get out of bed), migraines, confusion, huge brain farts, i.e. forgetting things that should be very simple such as my husband and kids' names, mood swings, from one minute I feel like everything is great, then fly into a rage over some relatively small thing that one of my girls did, and dizziness. I have tried all of the diets, tried a neurologist, who did a ct scan and said everything looks good, (I told my hubby that indeed the dr did find a brain in there), and everything elese my mother has suggested. I have been refused the narcotics on a few occasions, but when that happens, I usually get Valium or something along those lines that is just completely worthless. Valium actually does not calm me like it's supposed to, it makes me very anxious. I have told several of my dr's that the only thing that helps in any way is the nubain and phenergan. Most of them smile and nod, then tell me they are going to try something else. I finally am getting copies of all of my medical records so that I can have a list of what I have taken and what effect it had on me, so that the next time the dr asks, I can say definitively that I have in fact taken everything and nothing helps. I really appreciate everyone's support, and would like for the suggestions to keep coming. At least by hearing everyone else's stories, I can know that I am not alone and that I am not completely crazy. Posted by MommaK (Member # 10376) on :
Hi! I empathize with you and your migraine problems! My dd has had a migraine since Jan with severe intractible migraines lasting upwards of two weeks at times. She hasn't been formally diagnosed with Lyme but has most all the symptoms. We live in an area where lyme is rare and are searching for a regionally located lldr. Anyway she recently was referred to the head neuro of a teaching hospital who also has migraines and also has a high tolerance for pain meds! The previous two neuro's we saw were not as knowledgeable as this Dr about migraines. However this new dr refused to comment about fatigue or lyme, bucause that was not his speciality! Just like searching for a lldr, I suggest you search for a migraine experienced neurologist. He even wrote his drug/dosage recommendations for us to take to the ER next time we face the naysayers and Dr looking for drug seekers with directions if any ?'s call him or his NP. I think it would be great to have all your records available for the ER DR. It's impossible to know every drug, dosage and mode of delivery that you have tried. Like some of the previous posts my dd has had anxiety and even tremmors with IV compazine. I am not surprized none of the triptans, calcium channel blockers, beta blockers, antidepressants, topamax, depakote etc have helped after reading about other lymies experiences. Have found nothing that was not IV to even dent the pain! Just started taking naproxen as preventative that should also help with joint pain. Not long enough to tell yet. Internal Med Dr has done trials with antibiotics that helped other symptoms, after hirx. Looking for others with Lyme and severe migraine! Hang in there! MommaK
Posted by lymie tony z (Member # 5130) on :
Oh OH....
EETS Startin to smell a little fishy round here!??
zman
Posted by MrG (Member # 10254) on :
Hello all...may I bring everyone's attention here what has cured my migrains & headaches. It was the msg-free diet that did it. That was over 2 yrs ago. Very rarely I get a headache anymore. Besides foods & drinks this also includes especially supplements & meds.
I guess nobody here knows about the cayenne trick. Get the liquid form & just put 1 drop on your tongue & it will take your migrain or headache away in most cases in less than 5 seconds. It worked every time for me. I tried it on my daughter-in-law who had migrains for years. Just 1 drop & it was gone in 2 seconds. Tried again on a co-worker who had a bad headache. Just 1 drop & it was gone in less than 5 seconds. Start out very small at first...it's hot stuff.
Pat Sr
Posted by Lymied (Member # 6704) on :
My migraines were tied to MSG but they eventually got so bad that it didn't matter if my diet was prestine...still had the migraines.
Definitely feel though that lyme and MSG are a bad combination. I did a lot of MSG research. Beware that hydrolyzed protein is a glutamate and is in about every prepared food known to man.
I can now handle little bits of MSG that I never could handle before treatment. I try to stear clear but cheat every now and then.
Posted by AliG (Member # 9734) on :
Pardon me,
I'm just swimming through. It's become a little bit too deep for me.
TaTa! Posted by lymemomtooo (Member # 5396) on :
.
[ 19. October 2006, 08:55 AM: Message edited by: lymemomtooo ]
Posted by AliG (Member # 9734) on :
pardon the interruption....
Just curious, Mr.G, have you been able to find a LLMD yet, so you could "put a label" on yourself?
Perhaps you could just get your regular Dr to draw tests for Igenex, since you don't wish to be treated.
Just to refresh your memory, in case you don't know what I'm talking about:
posted 10-08-2006 01:32 AM -------------------------------------------------------------------------------- Hi Ali...thanks for your PM. Actually I'm for the most part pretty healthy right now. Just recently I think I made the connection between my past problems & LD. I looked at the symptom list & scored very high, but most of these I have to a much lesser degree. My worse symptom was the seizures, but I got rid of these to. I have this one rash on my leg for a few years that never heals & about a week ago it was tingling & at the same time my back right chest wall was hurting so I just thought of the word lyme & this is where I made the connection. I'm almost too embarrassed to tell you just how many symptoms I did have, but I don't have too much anymore. I do wish to be tested though so I can put a label on myself. But I don't wish to be treated by any doctor. I treat myself. I'm into alternative health. I did call Dr E in Jackson but they don't take ins. As for the one in Flemington, I'll save that one, do they take ins?
Also thanks for the other members that PMed me.
Pat Sr -------------------------------------------------------------------------------- Posts: 4 | From: Toms River,NJ | Registered: Oct 2006 | IP: Logged
TaTa Ali
Posted by MrG (Member # 10254) on :
Hi Ali...I'm going to see my first LLMD this coming monday. A eye doc by the name of Dr S in Branchburg, NJ by Somerville. A little ride from Toms River but what the heck. Maybe while I'm up there I'll go see my mom in Morristown.
I've spoken to Dr S on the phone. She also has LD. She does the Vision Contrast Sensibility Test(VCS). She had me go to https://www.chronicneurotoxins.com/index.cfm to take the preliminary free test which I guess I scored high on, don't know what the numbers mean. I guess she takes it from there. She already said on the phone she will probably want to try cholestyramine on me. I don't know...we'll see. BTW...since my last post to you a lot of my old symptoms have come back for some reason.
Ali, I have 'msg symptom complex'. I have to be very careful what supplements & meds I take. Certain excipients I have to be careful with. Mainly gelatin in capsules. They will most definately give me my seizures back. Also citric acid amonst many others.
BTW...that VCS site is very interesting, stuff that makes sense. For instance, they had a section on neurotoxins from being exposed to a algea bloom. That caught my eye. You see I was exposed to a algea bloom way back in June-July of 1974. I was a commercial fisherman back then. Soon after that I had a very severe case of cervical spondylosis. Was there a connection? I wonder. I'll ask the doc about this.
I'll get back to ya after my visit & let you know how I made out. Thanks for your concern!
Pat Sr
Posted by MommaK (Member # 10376) on :
quote:Originally posted by lymie tony z: Oh OH....
EETS Startin to smell a little fishy round here!??
zman
Please pardon the ignorance, but was that directed at me? I'm new here and want to make sure I didn't say anything I shouldn't! Thanks!
Posted by dontlikeliver (Member # 4749) on :
I used to get such bad migraines that I thought I would die from them sometimes, from a stroke or something; since taking Mepron and Malarone for Babesia for a total of 13 or 14 months, I do not get the monumental migraines anymore.
So, if you haven't already, that's one thing to consider (Babesia).
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