posted
Hi Everone, I've been following this forum for a month or so now, and have received great input and advise from a number of you. I would like to know if anyone with lyme had only neurologic symptoms present, specifically headache type and peculiar feelings all through head. I have been going through 7 months of unexplained headache type problems with a clear MRI being the only test done. I've been going through med after med trying to fight it with no success. My symptoms, hard to describe, do not fit classic headache/migraine symptoms. My doc and neurologist do not know what's going on, and both felt lyme was farfetched. Could anyone describe feelings in their head to me? I always have a peculiar disturbance in the top of my head, it sometimes burns, and I get little shocks, prickles and tickles under my skull, all over my head. Within this I get headaches and migraines. Previously,I had numbness and tingling down one side of body, was tested for MS but negative, and sypmtoms eventually left. I had tremors from the waist down, one time only. I've had unexplained jaw/tooth pain and facial numbness, which has passed. Still get the odd day of facial disturbance but not often. I've had arthritis in my knees for 8 or nine years, bad now but only flares up occasionally. I sleep poorly without meds. When head is really bad my tongue goes white, I get really thirsty. My legs get weak when my head is bad and I get little shocks through them. SHOULD I PERSUE THE LYME DISEASE ISSUE? I can't help but worry that all these sypmtoms have come and gone and none ever have been explained. I'd really appreciate anyone's input, especially where headache/general head symptoms where your major symptom. All things considered I just don't think I'm as sick as many of you. I'd hate to think its in an early stage and not being treated. I don't recall a tick byte and feel the odds of it happening to be are very slim. However I cant' ignore what I read here. Thanks in advance for any input.
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Headaches have not been my only symptom, but they have been a primary one. Your descriptions sound very familiar. I think it is worth pursuing Lyme, especially if they have not found anything else. I have found that for me, Bartonella and mold issues also play a part in the headaches.
quote:Originally posted by smercer: I have been going through 7 months of unexplained headache type problems with a clear MRI being the only test done.
I have had clear MRIs and clear CT scans.
quote: My symptoms, hard to describe, do not fit classic headache/migraine symptoms.
Mine have never fit classic migraine symptoms either, even though that is the closest they can get in dignsoing them. I do have visual auras sometimes, but not always with the headaches. I also get nausea and visual disturbance, but the headaches are not one sided, I can tolerate light, things like that.
quote: I always have a peculiar disturbance in the top of my head, it sometimes burns, and I get little shocks, prickles and tickles under my skull, all over my head. Within this I get headaches and migraines.
I have had (it is much better) burning on the top, sometimes going over the entire scalp and down my neck to the spine, swelling of the surface of the skin, extreme tenderness to the touch, sometimes tingling feelings in various parts, feelings like an ice pick was stabbing, sensation of pressure, pain from inside, eyes will not focus, face becomes tender. This has improved with antibiotics, osteopathic treatment, and I am taking topomax to control migraines.
quote:Previously,I had numbness and tingling down one side of body, was tested for MS but negative, and sypmtoms eventually left.
Yes, I have also had this. I have been dxd with thoracic outlet syndrome, basically means numbness and tingling, pain, etc. The cause can be functional (compression of nerves and blood vessels) or infectious. This has improved with antibiotic treatment and physical therapy.
It is VERY common for symptoms to come and go over the years. I had Lyme for at least 11 years prior to diagnosis, and have watched the sx come and go many times.
quote: I've had unexplained jaw/tooth pain and facial numbness, which has passed. Still get the odd day of facial disturbance but not often.
This was the thing that finally pushed me into Lyme treatment. I was in and out of the dentist's office with constantly migrating tooth pain. Upper teeth, lower teeth, bad enough thye were telling me I needed root canals. Fortunately I got a second opinion, who told me the tooth was fine, that it was nerve issues.
I also had problems that seemed like sinus infections, but weren't. Lyme loves the nerves, and the cranial nerves are a favorite. You can get all kinds of strange and unusual symptoms when the nerves are afffected. Most of that has stopped with antibiotic treatment.
quote:I've had arthritis in my knees for 8 or nine years, bad now but only flares up occasionally. I sleep poorly without meds. [QUOTE]
Doesn't sound like your only sx is headaches.
[QUOTE]SHOULD I PERSUE THE LYME DISEASE ISSUE?
Sounds like you need to find a knowledgeable doctor to assess your case. You certainly have enough possible symptoms that could be Lyme disease. A doctor would have to take a clinical history, test, and make a decision as to whether to try treatment. But it sounds worthwhile to me.
If your symptoms are due to an infectious cause like Lyme, they may get better and worse, but they are unlikley to go away completely without treatment. Even with treatment it isn't always guaranteed complete recovery, but you will have a MUCH better chance.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, SMercer!
Well, I can tell you that there are LOTS of cases of Lyme where headache is either the presenting sign and/or almost the ONLY symptom.
I am ONE OF 'EM!
Most times, I feel extremely lucky, as most of the other posters on here have what I refer to as the "body-type" of Lyme, with aching joints and pain. Not all, of course, and not every day.
However, other times, I feel extremely UNlucky, such as when my head is killing me for days on end. Before treatment, it was MONTHS on end! That was my main symptom that drove me from doctor to doctor. I thought I must have a brain tumour, my head hurt so bad. It woke me up from sleep. It hurt before my feet hit the floor in the morning. It became hard to think.
Borrelia LOVE your brain. It's a very good place for them to live. Nothing will bother them up there. Your body's immune system can't attack them up here. They can have a big party!
Please DO NOT take a negative MRI to mean you don't have Lyme. I don't know whether you have Lyme or not, but you should see an LLMD and check it out thoroughly. He will have you tested properly through a great lab like IGeneX for exposure to borrelia.
If you DO have Lyme, trust me, nothing else but long term antibiotics is going to cure your headaches.
I used every Rx headache med there is thru my neuro duck, to no avail. On my MRI, 11 brain lesions showed up which the radiologist felt were consistent with Lyme disease. I found an LLMD through LymeNet, tested highly positive at IGeneX, and now -- for the first time in about two years -- I HAVEN'T HAD A HEADACHE for a month.
You can do it too.
Please don't lose hope. It's hard when you're in headache he11! But better days are ahead. Please get checked out thoroughly -- a regular doc will not do it right and will use a worthless lab, and then you may as well NOT have done it at all.
Good luck and better "head days" to you.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
My husband offers you sympathy - he knows exactly how you feel. He has a 24/7 headache, mostly at the front right of his head. He describes the area behind his forehead as like a solid brick. His whole head feels under pressure as if his brain is swollen. Sometimes, he says the pressure recedes and it feels as if the inside of his head is ticklish all over. After a really bad 'head' day, he almost always has a day with a numb patch on his forehead just above his eyes. Finally, he used to have hyperacusis but this has gone.
His other main symptom is severe pain from his lower back to his knees. He has had a brain and spine MRI with no abnormalities found. His LD Western Blot is equivocal.
So yes, you are not alone.
Brodie
He
Posts: 72 | From Scotland | Registered: Apr 2005
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posted
I can relate to the headaches, migrain like,crawling sensations, pressure,pain in rt eye,rt ear neck shoulders,teeth jaw among other issues. Sounds like you need to find open minded docs and get tested by igenx.
Things that help,for me are accupuncture,cranial sacral,homeopathy and staying away from sugar etc. Also weather changes make it worse and exposed to 2nd hand smoke.
and chemicals. These headaches are brutal, I feel for you. Take care. Hope you find answers soon. Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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quote:Originally posted by brodiemac: My husband offers you sympathy - he knows exactly how you feel. He has a 24/7 headache, mostly at the front right of his head. He describes the area behind his forehead as like a solid brick. His whole head feels under pressure as if his brain is swollen. Sometimes, he says the pressure recedes and it feels as if the inside of his head is ticklish all over. After a really bad 'head' day, he almost always has a day with a numb patch on his forehead just above his eyes. Finally, he used to have hyperacusis but this has gone.
His other main symptom is severe pain from his lower back to his knees. He has had a brain and spine MRI with no abnormalities found. His LD Western Blot is equivocal.
So yes, you are not alone.
Brodie
He
Has your husband ever had a lumbar puncture?
My sons (age 15 & 19) have intracranial hypertension (pseudo-tumor cerebri) and an LP is the only thing that gives them relief from their headaches.
Symptoms of intracranial hypertension are:
* headache * transient visual obscurations or blurring * pulse synchronous 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 eye problems. Their headaches started in 1999 and they are constant and severe. Antibiotics have not helped the headache.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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posted
Keep on pushing doctors. My son had only headache at first and I kept on trying for answers. He did test postive for Lymes and we have begun treatment. GEt a good doctor and get tested! My sons headache was so bad and did not respond to anything. The doctor at a major University laughed that I thought it was Lymes. Don't give up! javascript:void(0) Big Grin
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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posted
Hi I have only mental problems - physically I am fine. was bitten in 2000 South Sweden. A week later rash, fever, aching muscles, swollen lymph gland stiff neck and terrible headache. Diagnosed Lyme after another 3 days. 2 weeks 100mg doxy. Immeadiately lots better but headache remained. Considered quiting work. Specialists tests cant find anything wrong with me, suggest shrink. Symptoms vary in intensity but always 24/7 :- * diffuse headache, occasional twinges * poor concentation * poor mental stamina * poor cognition aka brainfog
Gradually improved over the years. Main problem now is poor social competence. Tried many ABX with little success. Currently seeing Dr AW - positive Bowen. Some improvement but a long way to go I think. Rhubarb
Posts: 1 | From Sweden | Registered: Dec 2005
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posted
For 2.5 years, my only symptom was headache. I didnt get a lyme diagnosis until the development of other symptoms later. You may be ahead of the game in asking this question now.
Seek out a good LLMD and get a comprehensive check for all the co-infections and opportunistic infections that often accompany Lyme. That should help them get a better handle on a possible Lyme diagnosis.
Posts: 67 | From Fredericksburg, VA USA | Registered: Jun 2005
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posted
I also get the head thing. Not an ache but rather it feels as if my head is swelling inside. At first I thought it was an allergic reaction to something I ate, but It has occured quite often. When it happens my left side, the same side as the head problem, gets all inflamed, hot and tingling. I always have the left sided pain but the head is occasional and then flares the left side. It is scary. I am seeing LLMD and being treated for lyme no co-infections. overwhelming. thanks for reading. anne marie Posts: 4 | From Lords Valley, Pa USA | Registered: Aug 2005
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posted
Here is a published report on headache as the first symptom of lyme disease in two patients. However, what you have described sounds like you have more than just headaches, but symptoms in other systems as well.
Cephalalgia. 1993 Jun;13(3):207-9.
Headache resembling tension-type headache as the single manifestation of Lyme neuroborreliosis.
Brinck T, Hansen K, Olesen J.
Department of Neurology, Gentofte Hospital, University of Copenhagen, Denmark.
We present two patients with monosymptomatic headache resembling chronic tension-type headache as the first manifestation of Lyme neuroborreliosis. The headache developed over a few days in both cases and lasted for three months in the first case and for two and a half years in the second case before the diagnosis of Lyme neuroborreliosis was made. Neuroimaging and many laboratory investigations did not lead to the diagnosis, which was only established after lumbar puncture. The CSF in both cases showed high protein, lymphocytic pleocytosis and Borrelia burgdorferi-specific intrathecal antibody synthesis. The headache disappeared completely after treatment with penicillin G. In patients suffering from daily headaches which have developed subacutely, Lyme neuroborreliosis should be considered even in the absence of signs of meningeal irritation. A lumbar puncture should be performed more often than is presently customary and the CSF should be examined for pleocytosis as well as Borrelia burgdorferi-specific intrathecal antibody synthesis.
Publication Types:
* Case Reports
PMID: 8358780 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Most of my symtoms were neurological. Ringing in the ears, headaches, visual snow, floaters, flickering vision, anxiety, depersonalization/derealization, depression, tremor, tingles someties...etc. I tested indeterminate for lyme but I never got any of the "normal" symptoms like Swollen joints or muscles.
Posts: 11 | From Florida | Registered: Sep 2005
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posted
Actually, my first syptom that anything was wrong was an episode of A-fib when I was 17. I was perfectly normal until then. I miss those days... Posts: 11 | From Florida | Registered: Sep 2005
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