Head Pressure and Lyme Disease

Here's my story....

I've had odd, often unrelated symptoms come and go for years that were all dismissed as "normal" upon further testing.  In 2003, I began having numbness and tingling in the spine with dizziness, especially when standing in one place for more than 5 minutes. Along with the multitudes of other symptoms that came and went,  (usually before I could get in to see a doctor)  I ignored it.

First off, I LOVE to fly and have never had a problem my whole life with elevation problems or pressure until.....In June 2004, not quite 40 years old, after a wonderful vacation in Vermont, we were almost home and I was relaxing with a new cd I'd bought in Vermont when suddenly, without warning, I had the most horrific pain shoot through my head like so much lightning!!  I thought my head was literally exploding and I actually SCREAMED on the plane.  I could not speak, I seemed to have become paralyzed. My husband was panicked, thinking I was having a heart attack. I am not a wimp when it comes to pain and I've dealt with it a lot over the years but this pain made me cry.  People around me "realized" what was happening and handed me gum, water, ice, and the stewardess was giving me tips on dealing with the pressure. When I got OFF the plane, the problems had just begun....my son and daughter picked us up at the airport and I was so completely drained of ANY energy, I felt catatonic. (I wasn't tired at all before all that! I was happy and excited after our trip) I struggled to stay awake till my kids went to their rooms for the night and I went to bed and slept for 16 hours. I was not able to sleep for more than an hour a night for the first 3 weeks so of course, I couldn't stya awake during the day. It was a vicious cycle. I went to the ER after a few days and over the next 2 months, I would have a CT Scan, MRI, and see a neurologist.  During all this, I am suffering headaches  all day and all night. The first month, they were 24/7 with the "almost"  same intensity as on the plane.  The second month they differed in intensity but were still 24/7 with horrible shooting pains at least twice every hour. The 3rd month, they were still horrible but at least I was now sleeping 3 hours at night and this is the time when the neurologist threw up his hands and said, "Well, some people just have headaches their whole life."  Headaches are fine, I told him, I can handle that. But I don't have headaches......I have 1 headache that never goes away. he told me to go home and take Tylenol or something similar....or he could prescribe migraine meds for WHEN i have a headache.  (Apparently he did not hear the part where I said I ALWAYS have a headache 24/7)   Of course, through all this, it wasn't just a headache, it was pressure, primarily  in the back of my head. I couldn't sit back on the couch...too hard. I bought pillow after pillow, even have slept on a balled up blanket because anywhere I laid my head, my eyes felt like they were bulging out of my head!! It feels like something is growing and pressing on my optic nerve. Of course, the scans showed no tumor so I'm "normal", right??

my friend's 14 year old  daughter had just been diagnosed with Lyme Disease after years of searching for answers to this girl's problems....many neurological. (When she'd get a new symptom, I'd often say to myself, "Hmm, I've had THAT for years") Well, when I described my above experience, she said, "you need to be tested for Lyme Disease."  Of course, she'd been bugging me to do it since her daughter was diagnosed in about MArch of that year.

HOWEVER, The trouble with Lyme Disease diagnosis is this....if you just got bit and know it, you go to the doc, he tests you and if you have it, he prescribes 6 weeks of antibiotics. If you get bit and don't know it (which is common) but somehow are "lucky" enough to be diagnosed before the pathogens invade your body systems, again, you'll be given antibiotics and you'll be healed most likely. But when the antibodies to fight off the Lyme Disease start to disappear, there becomes nothing to test. (This is somewhere around a year but may be less for some people) There IS a test though that is probably cutting edge for people who have what they call the desseminated Lyme. My clinical symptoms were already a "given" that I had it, according to a doc I saw in Missouri but the test confirmed it.

In September, 3 months after my initial explosive headache, I drove 5 hours with a raging pressure and headache to see this doctor, as there are few who are truly knowledgable on Desseminated Lyme Disease. He spent 4 hours with me listening to my history while he made notes. His paperwork is extensive as far as questionaires on symptoms and things so he went over the hundred or so symptoms I checked.  When he asked about head pressure (which was an actual symptom of Lyme), I told him the story and he explained the reason (which is confusing and not important here).  He prescribed me Diamox to use as needed but I find it makes me real loopy.  Once I was diagnosed and he created a plan for me, I went home and began a very intensive antibiotic therapy which consisted of 6 weeks on one drug, switch to another and another and another till I went through about  a year and a half's worth.  He also suggested  going off caffeine and sugars (esp. fake sugar like Equal) for the first 2 months of therapy, taking vitamins, and probiotics along with an anti yeast drug to combat all the yeast from the high doses of antibiotics.  Well, barely a month later, I was sleeping 5 hours a night (my normal was 7 hours) and I the headache, though still there had decreased in intensity considerabley! Eventually, they went away completely, as did all my other constant symptoms of pain, nausea, etc. (remember, I had 100 or more symptoms....too many to mention here!) Now it is 2008, and I still have slight pressure in the back of my head still but most of the time, it doesn't bother me. I rarely have headaches and when I do, I wonder what's causing it. It often seems linked to processed foods or fast food hamburgers and such. But I don't know. I am still living with head pressure that sometimes gets worse from time to time but it goes away at least.  I have lived with Lyme Disease since probably around 1992 so I probably wil never completely eradicate it. Not everyone does but they get to a level that is under control.

Tricia Gianino said...
My 12 year old son has been having chronic daily debilitating migraines for about 7 months. He's been being treated for migraines for over 2 years but they weren't like this and for a while even went away. Then last summer they came back but were different. They were daily and unremitting. None of the conventional migraine drugs helped, he's taken dozens upon dozens and recently was admitted for inpatient treatment twice for extended stays at a hospital in Chicago by a well known headache clinic. He had dozens upon dozens of IV meds, some aggressive and scary and not just their first line treatments. None of them worked, He's also had a SPG nerve block and botox, none of which worked. He's tried many triptans prescribed to take at migraine onset and none of them work, some even make them worse. He's been missing school daily, time with friends and family, even suffered daily while on vacation.

Then this morning my husband woke me up early, asking if Jack has been tested for lyme. He had a dream that a tick was in jack's belly button and then someone (he doesn't remember who it was in his dream) told him that jack has Lyme disease. He then went downstairs and started doing research, then came back up and woke me again saying "jack has Lyme disease". Ive now been doing my own research and in fact one of the main symptoms and sometimes only symptom is terrible headaches. But he's had other symptoms too, a rash a few months ago that covered his body, then one a few weeks later just on his back. He's lately had increased heart rate, we thought from one of his meds he's taking, but after decreasing the dose, didn't get better. He's had fatigue, I thought just from migraines and normal from just being in pain all the time (that's draining). He's also had jaw pain, to which we attributed to jaw clenching and got him a mouth guard from dentists but it hasn't helped the jaw tightness and pain. And he's had tightness and pain in his neck. He's been seeing a chiropractor and he also does acupuncture twice a week. The acupuncturist/chiro is the only doctor who has ever asked if jack was bitten by a tick and he hasn't to our knowledge. I am rambling but I am freaking out. I think he has Lyme disease and has had for months, even possibly over two years, and we've been treating him for migraines, and as of 6-7 months ago they've been daily and none of the treatment, including hospitalizations have worked.

We are from Missouri. Who is the doctor you saw in Missouri that specializes lyme?