Topic: anyone else have PAIN in their head when they sit (or stand or do anything)? Chiari ?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
So I was desperate adn googled this: "pian in head when I sit"
and I got a lot of answers actually! and a discussion was giong on with all these people that have the same sx as I do- pain all over but in head mostly, and sitting makes it worse and other things... (see list at end of all the sx)
SO- since all these sx are so like lyme.
has anyone here been misdiagnosed with lyme OR chiari? or do you have BOTH?
I'm getting worried as this "new" pain gets worse and worse. I cannot stand it. and I guess chiari can come from having lyme. I have al the sx below except for curved spine. <sigh> so tired of al this
From the website:
Listed below are Chiari symptoms grouped by the body area affected:
Headache
• Pressure-like headaches that start at the back of the skull and may radiate behind the eyes. • Headaches that worsen with physical strain, coughing, sneezing, or bending forward (Chiari headaches are often mistaken for migraines)
Pain / spine problems
• Neck pain, pain across shoulder blades • Chest pain • General body pain • Curvature of the spine (scoliosis) may be present with syringomyelia • Joint hypermobility (Ehler-Danlos syndrome) • Tethered cord
Balance / ear problems
• Ringing or buzzing in the ear (tinnitus) • Dizziness, spinning (vertigo) • Imbalance, clumsiness • Trouble walking (gait) • Hearing loss
Eye problems
• Blurred or double vision • Sensitivity to bright light • Spots or floaters in your vision • Jerking eye movements (nystagmus) • Difficulty tracking or following objects with your eyes
Sleep problems
• Snoring • Sleep apnea • Fatigue • Inability to fall or stay asleep (insomnia)
Face and throat problems
• Difficulty swallowing, choking and gagging • Facial pain, numbness or tingling • Hoarseness, change in voice • Chronic cough
Problems in arms and legs (spinal cord signs)
• Numbness or tingling in arms / hands / legs • Weakness in arms / hands / legs • Poor hand coordination • Loss of feeling in arms / hands • General body weakness
Thinking (cognitive) problems
• Trouble speaking, word finding • Trouble thinking • Problems with memory and concentration • Depression or mood changes • Nervousness or anxiety
Other problems
• Nausea and vomiting • Abdominal pain • Frequent urination • Irregular heart beat, palpitations • Passing out episodes, syncope
Chiari is often misdiagnosed because of the variety of bony and soft tissue abnormalities that compress the spinal cord, brainstem, cranial nerves, or blood vessels, resulting in a wide array of possible symptoms.
In fact, the diagnosis is often delayed until symptoms become severe or persistent. However, accurate diagnosis and an effective treatment plan are important to prevent further injury to the person’s nervous system.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Wow, I have a lot of those symptoms. they certainly overlap with Lyme and tick borne illness.
My daughter was diagnosed with chiari malformation many years ago, but it is a mild case. I have had numerous MRI's of my brain and a couple of cat scans, but the scans were just of the sinuses and mastoid bones. No DX of chiari...
Cerebrospinal fluid leak (CSF leak) can cause the type of head ache you describe - it hurts when you are upright but relieved when you lie down...
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks dbpei
how did your daughter get dx? like how long did it take for them to find it?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Lisa, my daughter was having a lot of head aches. So her pediatrician (she was only about 12 at the time) recommended she see a neurologist. The chiari malformation showed up through an MRI of the brain that the neurologist ordered.
The neurologist did not think it severe enough to do surgery to correct. Instead she recommended no shaking or jerking amusement park rides and if she ever gets in any type of accident, to make sure brain MRI is taken.
This was many years ago and since that time, the head aches have lessened. My daughter has taken up running and now runs marathons. So she has a pretty normal life despite having this condition.
Posts: 2386 | From New England | Registered: Aug 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo, IDK about EDS??? never looked into that, but briefly see that it means loose jionts or something? I do have that , but thought it was from being inactive so long?
it is sort of like when you are pregnant and they tell you to be careful when stretching, etc as your tendons are very flexable. it is sort of like that that I have. does it have other sx? I will look...
ugh ., tired of "looking" - just want answers.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
dbpei, thanks for sharing that about your daughter.
I called nuerologist office and they want me to come in next week! wow, talk about service, but it will be with a PA and I don't usually do well with them since they typically don't know much, but im trying to be open.
so the fact that they are concerned when I told them my sx makes me feel like they will come up with nothing and tell me to go away, like everyone else.....
I mean, it COULD be anything.
I was tlaking to the physical therapist today about how my hand numbness and tingling has gotten worse . he said its not from what hes working on and thinks its some other area. I think he said the - oh I don't remember!! ugh.
I cannot remember anythign any more!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
EDS .. (usually involves loose joints, but not always) is definitely connected to MCAS.
PS>.. Be ready for the neuro to hand you neurontin or something similar, then sign you up for a nerve conduction study.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
lymetoo, so by that sad face is this a pain causing test I am assuming?
can they measure damage in your brain? I feel so brain damaged.
I am getting such bad nausea now that hits in an instant and then immediately (almost) it surges up to my head and I get a terrible hot flash.
and now my stomach is really hurting all the time as these episodes have gotten more frequent and intense. now today my stomach feels like there is a big dough ball inside of it.
I was dx with gastritis when al lthis lyme stuff hit big- is that part of this? the lyme?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
the combo of head pressure and crippling stomach pain and nausea describes my last few months - here's what my doc said/did (not necessarily the same for you of course):
(1) stool testing revealed low secretory IGA - which messes with immune function. Have since been put on a Mushroom blend for gut and immune health and colostrum.
After about a week of those, my stomach pain (and nausea!) has disappeared! (this is after an ultrasound, CT, etc....lots of tests.)
(2) I'm transitioning to gluten-free, and when I do accidentally have gluten my stomach hurts a bit.
(3) I complained about congestions and head pressure particularly when lying down, and my LLMD did a nasal culture. This revealed MARCoNS (a resistant staph infection in my upper sinuses).
I haven't started the nasal spray for this yet, but it's good to have an explanation,
That said, this chiari stuff is interesting because I've had headaches like those for long time so I will check that out. I hope you find relief soon.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
MCAS involves LOTS of gastric issues .. oh yes. Bloating, pain, like a bowling ball in your gut.
The neuro test is for nerve pain and it causes MEGA pain in the nerves. I pray I never have to do that one again. I think I will just flat out refuse.
(has nothing to do with the brain)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
hmmm lymetoo, I do get that feeling sometimes. had it last week- bowling ball in my gut. and on top of everything else it made me feel like death.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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