posted
When I say severe I mean ER bad. I have had them for years and am now on Relpax and Topamax.
They have increased in the last 3 years to sometimes more then 2 a week.
I know I have lyme been on orals and now just started IV rocephin. I went through Babs treatment and I am doing Bart now.
My question is .....
will these migraines go away with lyme/bart treatment?
Are they really migraines or part of the lyme?
The relpax does ease some pain. But, you can not take it on a regular basis
symptoms are:
severe head pain neck pain numbness in back of head and around face mostly one sided pain off balance noise sensitivity light sensitivity
thats my migraine symptoms, here are the others..
short term memory loss confusion emotional outburts can't sleep but I am tired
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I just heard a recording of an interview of Catherine Willner, MD done by David Brady, ND of Designs for Health. They put on a Clinical Forum for Designs for Health regularly and he interviewed her. She talked at length about migraines, mainly in connection with neurotransmitter problems. Many Lyme symptoms are brought on by the neutransmitter imbalances brought on by infection and damaged myelin, etc., which can be repaired with the correct treatment. Heavy metals have to be out of the way as well as other neurotoxins absorbed from the environment. It's another multi-factoral problem. And not much works, until you address all.
You might want to do some research on the internet and I am sure there are publications by her. She is well known for her approach to migraines.
Take care.
[ 19. May 2006, 05:49 PM: Message edited by: GiGi ]
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
My pain is usually less acute than yours, but otherwise I've been migraining virtually non-stop for something like 8 years. Not fun at all.
For me prednisolone briefly knocked out the migraine like no other med, but isn't advised in infection situations. What the trial of that med did prove to me is that the migraine is not due to permanent damage. It can be reversed, we just need to address the cause.
Some of my email pals report their migraine symptoms are closely tied to their vitamin D levels (too high). One of the symptoms of hypervitaminosis D is migraine. Spirochete bacteria like Lyme are known to generate too much vitamin 1,25D.
Given all the above, it seems very likely to me that migraines can be due to Lyme.
Watch to see if there's any correlation between your exposure to light and your symptoms. Going outside in the sun will generate more 1,25D and will make the symptoms of some people worse than usual by later that day.
Posts: 727 | From USA | Registered: Mar 2006
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3greatkids
Frequent Contributor (1K+ posts)
Member # 3838
posted
Hello Proud Pup,
I am sorry you have those migraines.
I have had them for the past several years.
Before my Lyme diag.,I blamed the weather,sinus pressure and stress.
I have been in Lyme treatment, going on my 3rd year.I must say,those headaches have improved.
During the beginning of my abx. treatment I had them just about everyday,mild to horrible.I really had to learn how to go slow w/ the abx and learned how far I could take my treatment.
I have had some of them start and stay for an entire week,moving from eye to eye.Then I would have the migraine hangover.Recovery time.Just can't win w/ this stuff.
Migraine meds have helped me,along w/ ice packs,cool rooms,quiet rooms and dark sunglasses.I have been in slow mo for slow long.
I was treated for bart and babs w/ the Lyme.These bugs do go for the brain,so the treatment can be rough w/ the headaches.
Good luck,just wanted to give you some hope.It does get better w/ treatment.Hard to plan and get out though,that has always been a tough pill for me to swallow.I've gone from every week to maybe having 2/month.For me,that is progress.
Hang in there,better days ahead for ya.
Posts: 1076 | Registered: Apr 2003
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Proudpup:
Way before I knew I had Lyme, I was having an ear problem that went on and on, for five months. Fluid behind the eardrum, pain, SEVERE headache, etc.
The doc put me on prednisone for a week, which cleared up the ear.
It also eased the aches and pains, and stopped the headaches and migraines. At least while I was on it.
I knew that going on steroids long term is not good, but I remember thinking that doing a one week course of it a couple times per year would be a wonderful break from my fibromyalgia.
My second "cure" for migraines was having an open MRI. My headaches stopped, which was great. It lasted for about five weeks, then they began to come back. Boy, was I depressed.
It is a swelling feeling in the back of my neck, kinda numb on the outside, pain from the inside.
If I try to sit back in the chair with my head back it hurts worse. Almost like every nerve in my neck and back of my head is inflammed. lying in bed makes it worse.
It is like having a mirgaine with a bonus.
Thats how I am right now.
Light does make it worse. And if my head isn't hurting if I go outside or I am in the car for any amount of time, even with sunglasses, the light brings them on.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello Proud Pup.
I so feel for you. You have written my story!
I have migraines almost every day. In the last few months, there were a couple days I DIDN'T have one.
I too am on Topomax and Relpax but like you, I cannot obviously take Relpax every day and save it for the most excruciating ones. Any lesser med is a joke. Most headaches I just deal with, moving numbly about. Bending down is out of the question because of the intense pain.
For me, light is not bad, however, noise kills. Even running water, phones, people talking loudly, actually hurts.
I've treated with orals + one month of IV. Just discovered Babesia WA-1 and two weeks into treatment for that; hoping it turns me around.
Have you had MRI? I have numerous (11) brain lesions and LLMD suspects very poor brain perfusion, possible microvasculitis in my brain from lyme. Relpax & Company opens up blood flow to these areas, helping pain and enabling me to think coherently, sort of.
A lot of times I cannot hold a freaking thought long enough to reach for a pad of sticky notes to write it down.
There's no doubt it's lyme rather than "just" migraines. The presence of seropositive co-infections makes it pretty unlikely it's anything else. Remember too that people with lyme PLUS coinfections have a much rougher course. For neuroborreliosis patients, that could be a long path.
I wish you "good head days!"
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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The pain you describe, with the tangible pressure in the neck, sounds to me like lyme-meningitis. (I've had it several times now -- death would almost be preferable.) It is rather like a migraine, only much worse, and pain meds don't do much for it, and migraine meds don't touch it at all.
Do you vomit with these attacks? Shake or sweat, or both? I'd ask my LLMD about meningitis if I were you -- it doesn't always include running a fever. There *are* meds they can give you that basically knock you out for a day or two, which is a relief when they hit.
Also, are you sure the babs is gone? It can trigger these attacks.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Pup, I have had hormonal migraines since I was 13. They started becoming more frequent and severe during my 2nd pregnancy. This was also the time I was bitten.
Over the years I also developed chronic daily headaches.Since being in treatment for Lyme, most of the daily headaches are gone, but still have a series of migraines for over a week during my period that usually respond to triptans.
But, I also need narcotics every month. I am still hoping that I will get rid of more of the migraines. I am starting Babs treatment soon. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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I also have had these debilitating migraines including that swelling in the back of the head at the neck. To the point of my entire body feeling horrendous and vomitting.
I did not realize they were a part of lyme until I was diagnosed with lyme almost a year ago now. I have had them since about 1992.
The treatment for the lyme and coinfections, which includes the heavy duty abx and supplements and reducing my stress load...has helped decrease the frequency of my debilitating migraines!
However, I think they have gone down to my leg...is there such a thing as leg-graines???
posted
proud pup - Light making your symptoms worse is a strong indicator excess vitamin D may be a factor. This is a huge thing for those that advocate the MP treatment. You might want to check out marshallprotocol.com
Michelle M - I'm with you about sound sensitivity. Sound and stress are big triggers for me, moreseo than light.
Carol - my first unusual symptom was ear related, first itching then sound sensitivity. Your hypercoagulation link was fascinating. I need to research heparin more. I wonder if hypercoagulation is the reason so many of us lack the lunula on our fingers.
Posts: 727 | From USA | Registered: Mar 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I've *had* these migraines. And as you, they were SEVERE. In fact, they were my first symptom, coupled with
severe, intense, unrelenting vertigo. The brunt of my severe severe migraines lasted for five months straight with vertigo. ( no breaks, none whatsoever- went to bed with them both, woke up with them both).
I had: Pain and swelling in my neck ( deep intense pain) Pain especially in the back of my head SEVERE pain in the middle of my forehead SEVERE pain in my eyes SEVERE face pain from all the darn pain everywhere else I felt "full" and when I layed my head back or looked up, it got MUCH worse One time- I bent over, and actually felt some type of fluid go foreward, and I passed out.
They eventually caused me to have blood SPURTING nose bleeds. My head hurt so darn bad, when I walked, I had to tiptoe, BUT
it didn't feel like I was walking- felt like I was walking on clouds or bubbles.
In all honesty, I have no clue what cleared these up, but what I was doing at that time ( I was still undiagnosed and being told I was insane)...
what helped me was: Chiropractor Yeast treatment ( I took nystatin, olive leaf and probiotics) And I was on seasilver at the time.
Within a month of doing all THREE of these, my headaches left.
Four months later, I was diagnosed with lyme and wnt on treatment and they have never returned.
Except for when I work out in the heat.. or even sit in it. Then , Im doomed.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
I also take Topamax. I have been treated for babs, ehrlicia- mono & gran & I'm in my last few weeks of bart treatment. The lyme is still active and is another story.
I recently went through a trial with my neuro where we reduced my topamx to see if the migraines were still there after the coinfection treatment. We reduced the meds by 1/2 and after 1 week I was in trouble. I wish it was not so but it was.
I have a Vit D level of less than 7 . . meaning that LabCorp cannot report it . . my doctor says that 80% of women that she tests are D deficeint, with or without lyme. Usually she can get a lab value on them though.
One thing interesting that came up in testing was - pregnenolone - the precursor of all hormones - was also deficeint/unreportable.
I have "seizure like" activity (eeg) that sets off my migraines - Rapoport, Sheftell; New England Center For Headache. I get them from changes in barametric pressure, flashing lights, almond extract. These things didn't seem to change with lyme treatment, although they have lessened in frequency.
Hopefully in time - these will resolve further.
Elle
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
Elle - if you had the standard vitamin D test, they measured only 25D. 25D is converted into 1,25D by the bacteria. A low 25D accompanied by a high 1,25D is strong indicator you may have an infection like Lyme. Both 25 and 1,25D should be tested at the same time.
Posts: 727 | From USA | Registered: Mar 2006
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posted
The spirochetes live in the lower back portion of our heads... That's thier main "lounge:.... I get the WORST headaches, I could go on a killing spree if I could open my eyes and get out of bed. Right now, I take 2 Lamictal and Topamax daily, to sometimes get relief, but when the bugs want to be known, they let themselves be known. It's also got a bit to do with my history of Lyme meningitis and encephalitis... I know someone else mentioned that already though.
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
I do not feel so alone anymore. It gives me hope knowing more treatment will help.
Last trip to the ER they admitted me for 4 days and did MRI CT and MRA. They told me everything looked fine.
Can I ask for those taking Topamax? What dose are you up too??
It was up to 50mg in morning then 50mg at night.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I was getting migranes 3 to 5 days a week-many years-
After I started treatment for - Babs Also -
My migrains have stopped --AAhhhh and Only return when I herx-Ouch-
Doctors never gave me even One Asprin to help with the pain-- I Hate those SOBs -- -- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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If you go to my recent post updated 5-20-06, 4-20-06 LLMD summary & LAB RESULTS, you can read some other reasons why we get migraine headaches.
I've typed so many of them lately, I can't remember the reason why, but I do think you will gain additional knowledge of the other 20-25 tests someone on the east coast & I have had lately coming up with other NEEDLES IN THE HAYSTACK why we are sick & don't get better!
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posted
"It was up to 50mg in morning then 50mg at night."
Same for me. I was down to 50 mg at night and this was no good. My doc told me at the beginning we could go all the way to 800 mg or so a day. . . . Whoa . . thats were the med got the nickname "stupidmax from"
I chose to stay at the lowest dose that was effective.
I split 100mg tablet, take 1/2 in the am & 1/2 in the pm. The 30- 100 mg tabs are about $130 less a month than 60 - 50 mg tabs.
Elle
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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posted
hi, i feel for you and for any one else who has these migraines.
i had them for about 2 1/2 months straight where i never got out of bed, then for a total of about 9 months, mostly in bed and 4 different stays at the hospital for 5-10 days at each time, trying to get them under control.
finally a found a headache specialist in wexford pa. and he put me on zonegran, it is a seizure med, like topamax (tried that to, tried i think everything) but he said this is a med that is to prevent migraines, i take 100 mg 2 capsules at bedtime and also he put me on 1000 mg of magnesuim.
it took about a week and 1/2 and my migraines subsided and even now if i don't take my magnesuim (took it down to 500mg after about 1 yr) i can tell and i start to get on coning on and i still do have the relpax, because every so often i do feel like i'm getting one and i try to stop it in it's tracks.
but i also have alot of stress going on right now, my father is very sick, and on top of everything else he is going in for a "triple a" surgery on 6-8 at cleveland clinic. any prayers would be greatly appreciated.
i hope this information may help you with your migraines. best wishes in health and happiness, myjesticgirl5
Posts: 39 | From sharon,pa usa | Registered: Jan 2003
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posted
I get terrible headaches also. Since treating lyme holistically (I am going on abx in a couple of weeks) I have reduced the frequency of my migraines from several times a month - typically days at a time - to about 1x every 4-6 weeks and usually lasting less than 12 hours.
I get a terrible headache with very sore eyes, nausea, light sensitivity, very sore neck and upper back and extreme stiffness in my neck and upper back also. When I feel an attack coming on I usually have 4 hours to ward it off - not always successfully. I had one today and had to leave work.
What I have found works well for me is taking several activated charcoal capsules, going to sleep as soon as possible, drinking about 20-30 ounces of my 'lemonade' concoction which consists of 2 pureed lemons (with rind on), several tablespoons of organic olive oil, filtered water and some organic maple syrup to taste. If this doesn't work I will take some tylenol 3. Today I was operating at about a 2/10 - 7 hours later I am 8/10 - without taking the tylenol 3.
Also when my headache finally resolves itself I will often get an enormous amount of cracking and popping in my upper back and neck. I haven't been able to figure out exactly why that is but it has been consistent for years. As soon as my headache resolves my neck snaps, crackles and pops to great relief.
tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Put me down for these horrid headaches as well.
After a year of oral abx and then a couple of months of Bicillin injections weekly, and the number of headaches diminished remarkably.
They returned to their once or twice a week after being off abx for a while.
Zonegran has helped prevent the symptoms for me as well.
I still can sense a headache trying to come on but they don't get bad enough (for my full migraine/cluster/tension headache Rx cocktail combo) except for maybe twice a month.
Toradol injections help the component of the headaches that feel like my brain is exploding. But its not good to take Toradol too often.
Sorry so many of us are dealing with this. These headaches sure do take up a lot of time.
quote:Originally posted by myjesticgirl5: hi, i feel for you and for any one else who has these migraines.
i had them for about 2 1/2 months straight where i never got out of bed, then for a total of about 9 months, mostly in bed and 4 different stays at the hospital for 5-10 days at each time, trying to get them under control.
finally a found a headache specialist in wexford pa. and he put me on zonegran, it is a seizure med, like topamax (tried that to, tried i think everything) but he said this is a med that is to prevent migraines, i take 100 mg 2 capsules at bedtime and also he put me on 1000 mg of magnesuim.
it took about a week and 1/2 and my migraines subsided and even now if i don't take my magnesuim (took it down to 500mg after about 1 yr) i can tell and i start to get on coning on and i still do have the relpax, because every so often i do feel like i'm getting one and i try to stop it in it's tracks.
but i also have alot of stress going on right now, my father is very sick, and on top of everything else he is going in for a "triple a" surgery on 6-8 at cleveland clinic. any prayers would be greatly appreciated.
i hope this information may help you with your migraines. best wishes in health and happiness, myjesticgirl5
Hi,
How much Topamax were you on when you swithched to the Zonegran?
Did you see a difference in the two meds. right away?
Does Zonegran make you have that "stupid feeling" that topamax does??
Thanks
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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Sorry to hear that you are in the ranks of migraine sufferers. I have had them since I was fifteen years old.
Before I was diagnosed with lyme I did a lot of research on food allergies and was able to control them well making wise food choices.
Even foods I once thought were 'safe' for me would end up containing 'hydrolyzed proteins' which can effect the brain in a similiar manner as MSG.
What I know now is that since abx treatment I have had the worst migraines ever with herxing and that they have become much less often and less severe. So I now know that the lyme was definitely involved.
Mine are more like mini-seizures...rotating numbness in mouth, face, and hands. Difficulty swallowing, problems thinking, sight issues, etc...
My advice - get real brutal with your diet if you are not already...try to keep caffeine to a minimum, low sugar, and lots of whole foods, do not eat processed foods. Stay away from soup out at restaurants that is loaded up with broth that has been cooked forever - creates MSG from cooking too long.
Look into ways to detox your system. Manual Lymph Drainage, skin brushing, baths with epsom salts, lots of good quality water, gentle exercise like walking if you can, anything to keep the lymphatic system moving and your instestinal system moving.
There are many doctors and scientists that have proven that there are more neurotransmitters in our guts then our heads. Toxicity in the instestinal tract can create migraine.
Take care and hope you find relief.
-------------------- �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
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posted
for those of you that zonegran helped prevent headaches, is there any good article that supports this, i need to show my doc some documentation that it helps prevents headaches, so a good article would help that you might have read would help me alot, thanks radha
Posts: 392 | From New York | Registered: Dec 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Radha,
All I could find is that a study was done regarding preventing migraines with Zonegran, but I don't know I to locate the results of the study:
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