I'm new to this board and still in the learning phase of Lyme and its treatments.
I suffer from a rare form of headaches and migraines. I know some people with Lyme may have migraines or headaches. I'm wondering if anyone can relate to me and my differnt variety of the above.
I woke up 13 months ago with severe pains in my head (migraine) and severe facial pain (trigeminal neuralgia). This continued for months with no reprieve, and it was "ER" type of pain.
Since then, my pains will fluctuate, but they never go away. The majority of my days I have some degree of a migraine, with the typical stabbing type pains in my head and face (but mostly on one side). My migraine pain increases as the the day goes on and is at its worse at night. That seems to be my pattern.
As I said I have trigeminal neuralgia which causes horrible facial pains, a lot of "nerve" pains in my face, I can feel where the nerve branches off into my face, it is a gnawing, nagging, aching pain that is sometimes dull and sometimes sharp and enough to make you think you'll go crazy. It can be mild or debilitating. Sometimes there are electric shock like pains, it causes teeth to ache, pain behind the eyes, and even the nose and jaw.
I have been to many doctors, migraine preventatives don't work for me, I use Maxalt for the pain when its severe migraine like in nature. I have so many types of head pain and fluctuation. So there may be a few days of lower intensity pains and then days when I go to bed with a knife in my head and wake up with it still there!
I am actually getting prolotherapy right now to see if it will help, as I'm told I have lax ligaments. I am now in Upper Cervical Care as well (always been in chiropractic), and I've used traditional massage and cranial sacral. I've been pretty thorough in looking for answers. In the end it could just be structural, but I question that.
I am just curious if these rare pains that never go away, even with a migraine med, and have persisted for over a year could be in part from Lyme.
Has anyone experienced anything similar? Has anyone experienced relief from headache problems as they have been getting better?
Thank you!
Amanda
-------------------- Amanda, Indy Just began Lyme treatment Posts: 19 | From Indianapolis | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Amanda,
Welcome! I could not have written a better description of my own symptoms. So yes, it can all be caused by lyme.
I do have other symptoms as well, but the things that you have written are the most disabling.
Nothing touches my head pain. My jaw and teeth pain has just started acting up again....
Hang on, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I have had migraines since childhood, but it was an increase in number and intensity that made me question if something was wrong. (I also take maxalt, but it didn't quite work as well on these "new" migraines I was having)
I even started having bad nosebleeds (which I had never had before) with my migraines.
I then started with numbness along one of the trigeminal nerves and then it spread to all three branches. Then it turned into a burning (like hot barbed wire) pain. I only had a few instances of the sharp stabbing pain,,,,it was bad and I am so sorry you have to live with that!!!
I was fortunate that the pain didn't last long because I was started on nortriptyline for migraine prevention and it halted the trigeminal neuralgia pain. It didn't help my migraines, so I didn't stay on it very long.
I did finally develop stabbing pains in my ears and throat (glossopharyngeal neuralgia). This went on for months. I also initially had such bad ear ringing and it finally turned painful also.
SO, yes...I would say that it is lyme related. I am MUCH improved since being on antibiotics. NOTHING else helped me. Some days I actually feel normal now.
posted
Thank you both for your replies. I can relate completely.
I have had very severe FMS- with pages of symptoms and conditions and a body completely out of balance (from hormones to vitamin deficiencies) for 8 years. Now that I'm an expert in FMS I need to switch gears and become a Lyme expert! I realize now many - or even all- of my problems are linked to Lyme. It has taken my ability to work for the past 4+ years, and I'm only 30!
As for the headaches (HAs I call them!), they have been more disabling this past year than my FMS. I could go on and on about the kind of pain in my head and face.
I also get sharp pains in my ears at times. I will get this nerve pain above my throat where I keep trying to get to it with my tongue. Other times I wish I could just stick my finger up under my cheek bone to dig at the pain under there! Or stick my finger in my head, I could point directly to the nerve! I can feel the pain travel from the inside of my head to the outside along the nerves, and where the nerves branch out.
My migraine pain can be stabbings or brain twisting, often I feel like someone has shoved a pole from the top of my head down through my face, and I can feel it the whole way!
The left side of my face is primarily affected- I'd say maybe 75% and the right side the other. My left eye will usually droop when the HAs get bad.
But, it changes, so it may be more temporal sometimes, or more around an eye other times. Usually its a nice combo of things! I think facial pain is one of the worse things. I often call it "bone-crushing" pain along my cheek. They do call Trigeminal Pain the "worst pain known to man" and "suicide pain". With that said, I'm sorry to know anyone else has to endure this. I know how discouraging it is to continuously deal with this.
I do take elavil at night, and it will help bring down my migraines to a degree.
One other strange thing that I get with my headaches is a puffiness in my face, esp on the left side, along with a strange redness in my cheeks. No doctor has been able to explain this yet. I haven't been able to sleep on my left side this past year, or I get pain in my face. If I do lay on it for a few minutes, I instantly get this puffiness. It may not be really obvious to others, but it is to me.
I don't know why the pains escalate over the day. I was thinking that if my ligaments in my neck were lax, and that was the problem, then it could be from holding up my head all day. My LLMD told me that Lyme could be responsible for making my ligaments loose. My whole body is this way- basically hypermobile.
I do though have a lot of cervical damage from C3-C7, and my C1 is rotated (just discovered this).
It is encouraging to hear that this hopefully will improve. I hate to be wasting money on other treatments if it is all Lyme, but I'm in the "I don't know" phase!
Sorry to hear about your teeth aching, gosh that's the worst! The aching and being able to feel the nerves all the way up into your face!
Oh, also, for me I get a lot of tightness and pulling along my occiput, where my neck and head meet in the back. The pain will reach up the back of my head and spread out like fingers, wrapping around to my face.
Ok, thank you for your replies. How long did it take you before you started seeing improvement?
Best of luck!
-------------------- Amanda, Indy Just began Lyme treatment Posts: 19 | From Indianapolis | Registered: Jul 2008
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posted
Oh, also (as if I didn't say enough the first time!) I always have the ringing in my ears and it gets very loud with the worsening of migraines.
Sometimes my trigeminal pains will be burning or searing in nature as well.
So glad that you are doing better. Thanks for the Hope!
-------------------- Amanda, Indy Just began Lyme treatment Posts: 19 | From Indianapolis | Registered: Jul 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Amanda I've been going through it as well. You might want to see a biological dentist to assess your TMJ (jaw) and mercury levels. And it is expensive to see these practioners. Sometimes they do allow insurance.
An interesting thing about lyme, it lowers your body temperature and reduces your bodies ability to remove toxins. The worst toxin is mercury. If there is lyme around your head, I'll bet mercury is there too. If mercury is at play, a biological dentist might help as well.
I believe you need to have a good team. A good llmd and a good biological dentist. I was fortunate to have both in a single practioner. You could ask your llmd about it.
I not only had lyme but very bad mercury issues.
good luck Amanda in your search and regaining health.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Do you have an LLMD?? I don't know of any in IN, so I was wondering.
I feel for you on the pain. I completed my lyme disease treatment several years ago and have been taking Cortef daily for the past 5 yrs for adrenal fatigue.
I tried to get off of it this summer and was hit with the nerve pain in my head and face! It was awful, but not as bad as what you described.
Bad enough for me to promptly go back on the Cortef though!!!
I still have pains now and then.. and in retrospect I remember that I've had episodes of this pain when I was going through treatment.
Are you on antibiotics now?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hubby has been fortunate that his headaches have not been severe or all that frequent.
Since you are new to Lyme and tickborne diseases there are a couple of things you need to be aware of. While Lyme can cause headaches and nerve pain there are other tickborne coinfections which could be involved. Hubby's headaches seem to be caused by Babesia and his eyepain (also infrequent) seems to be caused by Bartonella.
Hopefully you have an LLMD (Lyme Literate Medical Doctor) who is experienced in treating Lyme and other tickborne infections. It is very important to rule other the coinfections. Each different infection takes its own set of antiboitcs and coinfections if present must also be treated.
Don't know if you are into alternative treatments or not, but one thing you could try for the nerve pain is Saint John's Wort oil applied to the skin. Or you could take it as a tincture. This helps some people.
Another herbal possibility is Butterbur for headaches -- hubby had good luck with the NOW brand which combined Butterbur and Feverfew in the same capsules.
One additional thing to consider is hypercoagulation. If you have brain inflammation then most likely there is a lack of adequate bloodflow to the brain which could be a significant cause of the headaches. Things like Gotu Kola or Gingko Biloboa could be helpful in addition to systemic enzymes such as Wobenzyme or Vitalzym.
This is not medical advice, just my opinion based on hubby's experiencews.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
My very first symptoms were the migraines and nose bleeds on the left side. Once I stopped the bleed, the migraine would be gone.
A week or so later, the left side of my face swelled..somewhat slightly, but noticeable to others and it went numb in one spot. I started getting the stabbing pains in my face, and then the swelling and numbness moved down to my lip.
The swelling went away, but the numbness stayed. They did an MRI and found numerous brain lesions, so I was referred to a neurologist. So as the numbness, etc. spread to my whole left side, they thought I had MS. The headaches never went away and were pretty much debilitating.
When the neurologist first saw my MRI, he said "well, you could have had an infection at one time...but it definitely isn't normal" That was the last anyone said about infection because they were all thinking it was neurological.
I also tried the upper cervical chiropractor. It did seemed to help at first. I get a lot of tightness in that same area where the head meets the spine too, mostly on the left side.
I started getting symptoms 10/07, got the results of my western blot in April and my GP gave me doxy 200mg/day. When I finally got into see the LLMD in May & he increased my dose to 400mg/day, I was already improving.
I was waking up without headaches and having normal days within 2 months of treatment.
I have had some bad days since. I think they were related to herx/co-infection issues.
This is all still new to me and it is difficult to decipher between the herx/relapse/co-infection issues.
It is funny, but I didn't develop joint pain until I started on the doxy.
I totally know what you mean about the "I don't know phase!!" It is a little emotional for me to read your posts because I have somewhat forgotten already how bad it was for me earlier this year.
I guess you were tested by western blot and have an LLMD? My husband tells me that it is good to have me "back". I feel fortunate.
posted
Ive had all the headaches you've mentioned and more. Seems if its head related...yup...its me.
Since mine started Ive head classic migraines, with and without auras, eye migraines, cluster migraines, sinus migraines, neck headaches, carotyid migraines, TMJ headaches, burning scalp, tingling, stabbing, numbness...all of it.
Since the otc and prescribed meds dont work (mine never did either), you need to learn and apply alternative methods for the pain.
Im assuming youve already had an mri and physical, etc to rule out anything serious or noticeable.
If so, then alternatives Ive used and still use...
-ice packs -alternating heat and cold -deep scalp massaging -pressure points -meditation and deep breathing techniques -biofeedback -caffeine with tylenol -eat food (change blood sugar) -chew gum -eat ice cream fast (brain freeze)
*...and if all else fails...lie or sit in a dark, quiet room, pray...and wait for it to pass.
You're not alone when it comes to horrible migraines... we can relate...hang in there!
Posts: 514 | From . | Registered: Apr 2008
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I suffered with intense pain-shooting stabbing pain-continuous on the top of my head to the point that I swore an antenna was going to pop out. The stabbing electrical shock is unbearable pain took my breath away and would last for hours.
I send you all the best warm thoughts and comfort for what you are going through.
My lyme doc says YES he see a lot of people with TN and lyme. As I've been in treatment I have been blessed as my TN is almost totally gone.
Prior to getting into lyme treatment the only meds my previous neurologist could offer was a "seizure" medicine Neurotin..I was diagnosed with MS yrs ago and TN is a symptom with us MS'ers. hmm, boy are they on the wrong side of things.
I can't recommend enough that you find a good lyme doc and get into treatment. My doc also stated that there is on going research into a lyme/migraine relationship as well.
the best to you, tory
Posts: 158 | From PA | Registered: Oct 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i recently had my amalgams removed by biological dentist
in his office liturature said removing them can help/cure TN
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Alv
Unregistered
posted
alee -you just included all my symtoms that started well 13 years ago ...but got worst and worst over the last 8 years when I started beeign symtomatic and disable completly.
YES it is NEUROLYME.If you have IGENEX test I bet you have band 30 ( neuro) .My son has the same thing.my daughter has lyme but does not have the face ( swelling ) pain as me and my son and she does not have neurolyme .
Be aware that you might have had it for very long ( untreated ) and also coinfections with it.
YEs ear pain , jaw , neck pain ( I am compeltly off) .Finally after 15 months my back started gaining the strength that I did not have for at least last 8 years .I could not even carry a bag -as my right side was SO OFF my left side.NO KIDDING!!!
I had to be in physical therapy and chiropractic and do adjustment regurarly -THANKS to the damage that LYME did to me.After 15 months of treatment -i need only 1 adjustment for 1month while I had them 2 times a week.
My neck neded before 2 times adjustments on a week as it would go off just from the position on the bed.YES keep treating and do special exercise.Once your muscle will strenthen ..and you do the adjustment...than it will get better.
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posted
Yes, I have both the migraines and the trigeminal neuralgia.
The trigeminal neuralgia is atypcial and so that means constant daily pain that I've got at a lower level but when it flares, FORGET ABOUT IT!! It's like a wrench tightly clamped to the entire three branches of the nerve, with NO let up all day and night. I am going to ask my doc about the triliptal mentioned above.
The trigeminal is different from the migraines, I have learned.
I've tried a lot for the migraines which get so disgustingly severe with chills and sweats and vomiting and etc. This morning I woke with one and tried something called treximet for the first time. Since this particular migraine seemed to stem from the neck and spine and face musculoskeletal arthritis, it was different than others I get. But the treximet is a combo of immitrex and naproxen. It actually has got me to the point where I can get out of bed and I may be able to hold my cookies today! (knock on wood) But I still don't feel well.
But I'm glad the treximet has worked today, at least somewhat to keep it at bay.
I did go an 8 month period without migraines or vomiting (but still had the trigeminal neuralgia) while doing babesia and lyme treatment with antibiotics, so I am thinking that it is at least in part pathogen related, but also hormone related (migraines), and other related too.
posted
My 2 sons (age 18 & 22) have had constant, severe, unrelenting headaches since at least 1999.
They have pseudo-tumor cerebri (aka as intracranial hypertension). Their neurosurgeon thinks it's a result of being untreated for Lyme for so many years.
Jake (22) had a VP shunt installed this summer and Jordan (18) had a LP shunt installed.
Their headaches are much better but are still there. They were treated for Lyme & co-infections for a long time. The headaches didn't get any better with treatment.
They use Relpax for migraine headaches.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Painted Turtle- Yes, I know EXACTLY what you mean when you describe the wrench around those trigeminal nerve branches!
My TN is also atypical! Lucky us! In the beginning, I never believed that "migraine" was really an appropriate co-diagnosis to TN, as an actuallly migraine GOES AWAY. Mine did not. Now it waxes and wanes more often, but never actually gone. It is hard to distinguish when there is so many stabbing sensations in my head and face. I often link the two together now. But, I can feel the nerve fire from within. Also, lately my issue is often feeling like there is a saw that has sliced right down my head-- I can feel it from the back of my head, the top, and everywhere down inside my head through my face. Its like a plane of pain that is right through my head. Obviously, there is a lot of nerve involvement.
Today I had some strange sensations of coldness, but in a nerve like pain, in the back of my head and somewhere in the middle.
Anyway, I wish I knew what exact treatment for Lyme would best help the issue.
[QUOTE]Originally posted by painted turtle: [QB] Yes, I have both the migraines and the trigeminal neuralgia.
The trigeminal neuralgia is atypcial and so that means constant daily pain that I've got at a lower level but when it flares, FORGET ABOUT IT!! It's like a wrench tightly clamped to the entire three branches of the nerve, with NO let up all day and night. I am going to ask my doc about the triliptal mentioned above.
The trigeminal is different from the migraines, I have learned.
-------------------- Amanda, Indy Just began Lyme treatment Posts: 19 | From Indianapolis | Registered: Jul 2008
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Yes! I just came through another bout with the wrench and then a follow up migraine, and I found that eventually Treximet was helpful.
For me, the migraines came first and the trigeminal neuralgia creeped up slowly, progressively and worsening with dental treatment, later.
I found that with lyme treatment it is really important to work with the LLMD's. I have not found a remission, but then I have possibly had this progressing slowly since the 1970's or even my birth!
Chances are much better for a healthy outcome when you catch it earlier on, I think.
posted
my husband has suffered for over 8 years with migraines...and eye pain....had every test known to man...but thank God we found a lyme Dr. and now know he has nuro lyme...been in treatment for almost 2 years now.. no refeif yet but he is very good taking all his meds and is hopeful that there is a light at the end of this 8 year battle...hang in there and take one day at a time
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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posted
Trigeminal nerve complex myalgia can cause parasympathetic stimulation which manifests as hyperlacrimation. Tears that pour out of one eye, and horrible pain behind the eye.
LOOK UP "CLUSTER" headaches.
These are NOT migraines. Do you see colors and get visual distortions? Are you very sensitive to sound and light during the headache episode?
IF NOT....they are called "cluster" head-aches.
Sometimes imitrex shots (High doses.) ward them off. Prevent them from starting.
BREATHING PURE OXYGEN when a head-ache starts will snuff it out like a fire before it can get going!
Many Dr's don't know this either.
Look on the internet for a support group for CLUSTER headaches!
Seriously, the pure oxygen works!!!!!!!!!!!!!
Plus O2 doesn't cause ANY side effects!
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
These "cluster" headaches are caused by a malfunction at the trigeminal nerve complex. This is where parasympathetic and sympathetic nerve ganglia are tightly adjacent.
So a de-myelination here would cause one side to stimulate the other causing a positive feedback loop. Each side (Parasympathetic and sympathetic) stimulating the other more and more...until the neurons fail to fire from neural fatigue. Basically the neurons run out of neurotransmitters to transmit a signal, and the headache subsides. Takes about 1-2 hours.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
My husband had a neuro dr do surgey to check out his trigeminal nerves, cut both sised of his temples...they said everything was normal...eye dr said he had glacuma but being on meds for lyme now for almost 2 yrs, his eye pressure dropped from 24 to 12 witch in normal...we have tried and he has had so much done to him...he is hopeful now that he is in treatment for lyme (6 yrs late), he will at lease get some relief with his head and eye pain....there are alot of strong med he could take for the pain but he does not want to have to fight another battle with addiction..when the pain get above 10 he does take a mild pain med..
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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