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Headache/throbbing
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Headache/throbbing

When I lie down or recline my entire upper body "throbs". The back of my head, ears, neck, hands and the left side of my shoulder straight down to my waist throbs.  Sometimes it is all the way to my feet and in my temples. My hands, back, and sometimes feet have a numbness as soon as I recline. My hands become somwhat numb the minute I lie down and sometimes my entire arm and left shoulder blade feel numb.  It worsens if I put my arms above my head or lie on either side.  I have these sx during the day once in a while if I sit for long periods of time, but not usually.

I also have had a perpetual headache since 10/99.  I have had 2-2 week periods without a headache since then.  It is in my neck (both sides but the left is worse) and the base of my skull outward toward my ears.  My jaw hurts and sometimes I feel a pressure in my ears. Once in a while, my right hand shakes, I feel slightly dizzy or lightheaded or the feeling like my "brain is vibrating" (I know my brain doesn't vibrate but that is what is feels like because whatever I am looking at moves for a second).

It started with a flu in 12/98 when I took Entex LA and Biaxin and began having hat I would describe as an irregular heartbeat when I would lie down.  I didn't notice any sx during the day then but it gradually became a 24 hour problem.  I generally didn't feel well but couldn't quite figure out why.  I had an OB/GYN visit in 1/99 and my blood pressure was 140/100 (which was not common for me at all).  I had never had even a slightly high BP reading prior to this.  They told me that all the sx were just anxiety.  I knew better, figured it would just go away.  By this time the sx were constant 24 hours per day.

Within a week it was driving me crazy because it was contant, I didn't feel well, and it kept me awake at night, so I went to my family doctor.  He did not run any tests but said it was the Entex LA and that sometimes is can irritate the heart for a while after taking it.  I was given VERLAN 180mg to take for 6 weeks and was told if it didn't go away, that I would just have to wait it could take 6 months. I did what they said.  The Verelan gave me killer headaches, but it was only for 6 weeks.  The sx did not go away, but they were tolerable after the 6 weeks and gradually seemed to be getting better.  

I got shingles in June and by the first of August my sx were back to being only when I would lie down.  I decided it was eventually going to go away.

In 8/99 the sx returned along with some chest pain and this time I went to the doctor and they decided there was something wrong with my heart and admitted me to the hospital.  My BP was still borderline high.  My heart tests were all normal and the 3 week holder monitory found that I had PVC's.  They gave me toprol, cardizem, corgard which seemed to make my sx worse. They said it was hormonal and tried birth control pills which sent my BP up and started the headaches I now have.  They kept telling me it was anxiety so I tried celexa.  It made me extremely nervous and jumpy the first day so I didn't take any more. I KNOW NONE OF THIS IS ANXIETY.  

I finally went to another family doctor who performed head/neck MRI which he said showed a slight slipped disc in my neck and arthritis but didn't think it was causing my sx.  He told me to take 4 advil 3 times per day.  Which didn't work so I gave up.
  
I went to my OB/GYN who tried to talk me into seeing a neurologist and I am sending this to see what a neurologist thinks.  He mentioned a possible vertebral artery problem but I am very frustrated with the whole medical system.  I know there is something wrong physically inside my body because I know me, but cannot get anywhere.  

I have spent thousands of $ on all of this since 12/98 and still don't know how to fix or even help myself.  I believe it is all related and is just progressing. I also decided that if it was going to kill me, I would already be dead.  

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Dear Marcy:

I am not sure how to put all your symptoms together.  If your problem was simple vertebral-basilar insufficiency, then you would have dizziness, nausea, maybe vomiting, ataxia but these are not your symptoms.  The normal MRI is encouraging that nothing really worrisome is going on like a tumor.  The "slight" slipped disc is likely not the problem as one should not get symptoms as profound as yours.  The positional nature of your problem might indicate a cardiac/neurogenic syncopial abnormality where based on head position, one gets cardiac dysfunction and can produce symptoms of decreased blood flow.  However, this would not give you continual daily headaches.  A dysautomonic syndrome might give you some of the symptoms but not daily headaches.  So, as you can see, I can't put your symptoms together with any specific entity.

I think that a neurological appointment might help.  A good neurological examination with some directed labs might help isolated some potential problems.  Since you do not describe migraine headaches at any time in your medical history, I don't think you have transformed headaches.  But there might be a tension type headache variant occuring.

Sorry, I am not much help.

Sincerely,

CCF Neuro MD
19 Comments
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Avatar_n_tn
I agree with you that this is all caused by a compromised blood flow somewhere. It was always somewhat positional and I think because its severity comes and goes, that the sx are not taken seriously.  I have always felt (even in the beginning)that it felt like my heart beat was kind of forced. It didn't really race or beat fast, just hard.  Hard enough that my I could visibly see it in my upper abdomen.  The only time I actually felt good was after I exercised (tae-bo)

I also have a significant family history of circulatory problems. My paternal grandmother needed an abdominal aortal bypass (but refused),  my father needs one currently but won't have it done, and my sister just had the bypass surgery performed last year (age 47).  They were described as having "tiny" arteries.

I do have nausea and dizziness, just not all the time.

Is it possible that something internally could block the blood flow when I lie down or sit?
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Avatar_n_tn
Dear Marcy:  I'm writing you simply because our conditions are so similar. When I started menopause, I too, had heart palpations that were prevailent at night.  I went through one week wearing a monitoring device but the results were normal.  I dreaded going to bed because I knew I'd hear and feel my heart pounding.  Needless to say, it didn't help my stress level any.  The condition lasted over a year and then disappeared.

I've had migraine headaches ever since I can remember.  About two years ago, something else started.  I have shoulder, neck, jaw, face, eye and scalp pain (not a throbbing headache, per se), naseau, light and noise sensitivity.  This conditions goes on for days -- sometimes shifts sides from right to left.  I also experience the lightheadedness and dizziness that you speak of, alot of pressure behind the eyes.  I have had an MRI of my spine which showed slightly bulging discs.  I also have been to doctors who cannot diagnose what's going on.  It's very frustrating, because it's so "multi symptomed" and because it comes and goes.

My doctor believes that it is some type of migraine/ tension/anxiety headache "variant", being caused by muscle spasms in my back/shoulder/neck area.  Aside from trying relazing techniques and taking warm baths,  I am currently taking antiinflamatories (everyday) and AMERGE (naratriptan) when I feel the pressure/pain go from my neck to my head.  It helps somewhat.

Hang in there, I know how you feel.  There's something wrong with me and I'd like to know what's going on, as well.  I am beginning to think, however, after numerous doctor visits, that maybe there is no answer and I have to just take it day by day, and treat it day by day the best I can.  Good luck to you.      

      

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Avatar_n_tn
thanks for the comments.


CCF Neuro MD
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It is so frustrating not having a diagnosis, not knowing what your symptoms mean, I sometimes feel my twitching, headaches and fatigue are getting the best out of me, and others I try to ignore them and go on with my life. I have 2 kids(my boy 9, and my daughter 11)whom I adore and keep me very busy. But my constant discomfort it's hard to deal with, I have seen a neurologist a few times and changed my regular doctor in the past year. I've had several tests done, I'm 37, hispanic origin and with good health all my life. About a year ago after an allergic reaction to a fruit that ended it up in the ER, I started having those strange headaches ,that felt like I had bad circulation on my head, I had an MRI in March of last year and they told me it was normal, after that my headaches got worse, had another emergency trip to the doctor, I was given a shot (Imitrex)that gave a severe stomach pain, the day after I started noticing some vascular twitching around my temples and some tingling of my feet and hand, soon after twitching of calves, thights, inner arm etc. I have headaches every day now, with some back pain, and twitching on a daily basis.Last november I was having palpitations and chest pain, could this all be related to my allergic reaction to that fruit or maybe the contrast they used on the MRI of my head, or is it a circulation problem, I have no family history on this, my mom takes highblood pressure medication, my maternal grandma had circulation problems my dad is fine. I feel tired of this feelings do you have an idea of what this might be? Thank you
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Avatar_n_tn
Dear Mayra:

Did you have an EMG?  Is all your blood work normal, no lowish level of B12, etc.?  A one time allergic reaction should not cause continual headaches for over a year.  In addition, the twitches you indicate you have do not seem to have a nerve distribution.  I would think that what your experiencing is benign fasciculations.  There is no treatment for these and eventually they should go away on their own.  I would see someone about your continual headaches.  You may have what is called a transformed headache.  

CCF Neuro MD
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WHAT IS A TRANSFORMED HEADACHE?   I HAVE NEVER HAD HEADACHES UNTIL THIS ALL STARTED...... AND THEY STARTED WITH THE VERALAN I TOOK FOR 6 WEEKS AND ESCALATED AFTER I TOOK ORAL CONTRACEPTIVES  (my doctor thought all of this was "peri-menopause").  I AM 45 YEARS OLD.

COULD THE THROBBING/NUMBNESS BE A CIRULATORY PROBLEM (COMPROMISED  BLOOD FLOW SOMEWHERE) WHEN I RECLINE OR SIT?  I NEVER HAVE IT WHEN I AM STANDING.

M
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Avatar_n_tn
Dear Marcy:

A transformed headache is a term for migranie-like headaches that become daily.  The suggestion concerning syncope in my posting concerns the problem of circulation.  I would talk to your family physician about this possibility.

CCF Neuro MD
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Avatar_n_tn
Dear Marcy

Three years ago I started getting throbbing headaches, after I went on the contraceptive pill again.  My symptoms included a ringing sensation in my ears, a sense that my head was disproportionately heavy and visual problems that I couldn't explain although I knew something was wrong. I kept seeing things out of the corner of my eyes that weren't there and things seemed to vibrate! I was also having frequent sensations of pins and needles in my hands and legs.

I was also experiencing pain in my jaw, neck and cheek bones but I eventualty realised this was due to the fact that I was continually clenching my teeth due to constant headaches.

My condition has eventually been diagnosed as Benign Intracranial Hypertemsion (sometimes known as Pseudo Tumour Cerebri or Idiopathic Hypertension)

This is nothing deadly and treatment eases the problems a great deal.

Basically it is an abnormnality in absorption of excess production of, cerebrospinal fluid (CSF), leading to a build up of this fluid in the brain.  Diagnosis is by scan and measurement of the CSF pressure.  On a CT scan, the ventricles (chambers in the brain) will usually appear normal or small. The CSF pressure should always be measured despite the normal scan results. It will be found to be raised on lumbar puncture.  Management is variable.
It can be associated with overweight, but losing weight does not appear to arrest the disease.

Run this by your Doctor or Neurologist, at least it is something else you can eliminate.  

I understand how frustrating it can be because I spent ages insisting there was something wrong but no-one could tell me what.

Good Luck!
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Interesting that you should mention intracranial hypertention.  My husband has had a headache for over a year now and at one point they thought it was intracranial hypotension because the opening pressure of a spinal tap was LOW.  Subsequent treatments, like blood patches, did not help however.  We're still looking for a cure and even a cause.  He has gained some relief from the use of D.H.E. (dihydroergotamine) injections, although the headache is not gone.  He is off narcotic pain meds, though and his pain is not more severe than it was with the narcotics.  We have also upped his Neurontin to 2700 mg per day total.  Good luck.
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Avatar_n_tn
thanks for the comments.

CCF Neuro MD
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Dear Dr. thank you for anwering my post, to answer your questions, no, I haven't had an EMG, I asked my doctor about this on my last visit(last week), he explained to me that this is a test of a particular area or nerve such the carpol, but I guess I have the nerve twitching everywhere, does this sound right? As far as the blood work goes, I've had a number of tests like blood count, thyroid, inflamation (inflammation), and had a lot of other when I went to the ER with my chest pain and palpitations having found no evidence that I was having a heart attack, but I think this thing with the twitching may be causing the palpitations, right now my headache is gone, but my back hurts in the middle area and as I'm sitting her typing, I feel some radiating sensations to my upper body, like tingling and discomfort that goes between my shoulder blades and up, but I have no neck pain, it's more around the middle of my back and It feels like is in between my back and my chest, somewhere deep in the middle, right now I felt a big twitch on my left calf(inner part) put it doesn't cramp or hurt, and a couple of chest palpitations. I also have been noticing lately that my back and neck crack a lot specially when I first get up, standing up too long puts a lot of pressure and pain on my back, sometimes I get the pins and needle feelings and also a feel like drops of water on my legs, and there is no water around. Every day I pray for this to go away and to find out WHAT is causing it. I take Magnesium, Potassium, Calcium, Vit E, Vit A, all of them after I started to get the twitching, not noticing any benefits, I also take aspirin just for the heart benefits, I've tried migraine medications but even at the smallest dose, they make me feel druged up and no relief, I just had more blood work done, another thyroid, Pituitary gland test, because two of those hormones were low, the holter monitor showed some PVCs, I also had a Lyme test on October of last year. All of these symptoms started on the spring of last year, after I had a big nectarine  which I had a severe allergic reaction to, racing heart beat, blood pressure in my head was noticible, I could hear the blood pounding around my temples and severe shaking and chills plus red and white bumps on my face, I was given Benadril shot at the ER and then sent home. Soon after that my headaches began, they felt heavy on the rigth side of my head, behind my right eye with a feeling of my eye been pulled backwards, that's when I had the MRI and nothing was found, then I developed the different symptoms, traveling headaches, twitching on my legs in different spots, then chest palpitations, stomach abnormalities, and back pain and cracking, SORRY this is so long, I began thinking that maybe the fruit had some pesticide and I've been poisoned but I don't think that was a large enough amount to be causing these problems. I even checked about the contrast they used on the MRI and found that some abnormalities have been reported since I only had the headaches before the MRI. I wouldn't worry about any of these if I didn't feel like so sick every day and without a diagnosis. My doctor put me on muscle relaxant, took one pill and felt completely out and didn't improve my overall feeling, I understand it takes a while to see results, did I mentioned that I've been having eye trouble too. When I first wake up in the morning With my eyes closed I see like a liquid substance on the outter corners of my eyes, and some foggy vission during the day. If I tell people about all these things I sound a little crazy, I'm posting this to see if it makes sense to anyone out there.   Thanks a million
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Avatar_n_tn
Mayra:  As a person whose condition is multi-symptomed, I understand how you must feel.  I also have had back, shoulder, neck and head pain, headaches, heart palpatations and muscle spasms.  I have had all the tests you have had and taken the same medications you have tried.

About three months ago, I decided to stop everything -- vitamins, herbal medications, drugs of any kind (pain killers, muscle relaxants, antiinflammatories, migraine medication) and all the foods attributed to causing the onset of migraines (you know -- coffee, chocolate, hard cheese, etc.) on the theory that maybe it was something that I ingest that causes these conditions.  Truthfully, I didn't believe that anything I ate would cause palpatations nor did I believe that my back/shoulder/neck pain would bring on headaches, but I was desparate.  (My neurologist was aware that I was doing this and thought it was a good idea).

Since that time, my condition has gotten better  I still do take one aspirin a day.  The palpatations have ceased (although sometimes I still am jumpy at night).  I do some deep breathing exercises before I go to bed and find them relaxing.  The back/shoulder/neck pain has improved.  I try to exercise a little a day (something I would never do, thinking it would make something else worse).  I notice that when I lift anything heavy (such as a bag of groceries or carrying around a handbag that's loaded down!), it causes muscle spasms so I watch that.  The fogginess during the day was pressure in the head.   When I feel that a headache is coming on (they have become less frequent, as well) I resort to migraine medication.  On a whole, I feel much healthier and clear-headed.

I hope this helps.

  

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Please go to Carbon Monoxide Headquarters on the internet.  The symptoms you're experiencing are exactly like ours were for over 4 years.  Lower than lethal levels of co (coming from the likes of a blocked chimney, etc,) could eventually cause death, but will definately cause horrible symptoms & pain.  PLEASE check out the "chronic" section, the symptoms section & the misdiagnosis sections very carefully!  WE ALMOST DIED, spent thousands & thousands of $$$ on doctors, er visits, rx's etc...
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I have many of your symptoms as well and am currently still undiagnosed. E-mail me privately if you want.  Maureen or ***@****
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Thank you Jay, Maureen, and Cher, I'm thinking about stopping the vitamins and medications(which I don't take too well) and exercising more, Jay I know what you mean about that, but sometimes I feel so bad that exercise is the last thing in my mind. I love gardening, riding my bike, and walking, but lately I don't have the energy to. I'm only 37 but sometimes feel like 100. I drive my kids a lot and have, like all of you a lot of chores to do, I found that being tired makes me feel worse, I agree with you, deep breathing is helpful,(we don't think about breathing at all, do we?) I'll be checking into the corbon monoxide subject, I have a detector at home and has gone off in the past when I turn the wall oven on, the only symptom we share in our house is headaches and tiredness but no one has it continously like I do. Jay maybe the heart palpitations could be related to other problem, I notice that I get them around meal times, my doctor says that acid refflux(don't know the spelling) could cause this. Good luck to all of you. Maureen you can E-mail me at   ***@****
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Mayra:  One last thought.  There are many experts out there that feel that migraine headaches, palpatations, twitching, jumpiness are the direct result of caffeine addiction (in our coffee, tea, soda, chocolate, cocoa,, etc. and in medications such as anacin, bufferin and others).  You may want to try to slowly cut back on caffeine intact (total caffeine withdrawal may give you a headache as well) and see if any of your conditions improve.  Good Luck.
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Jay, thank you for your reply, you are right about caffeine, I don't have a lot of it on my diet, maybe a soda once in a while and chocolate, but I was told at the hospital to watch my intake,I've heard about niacin causing such problems, but I don't take any anacin or bufferin, do you know if the calcium in tumms is harmful on a daily basis? I've heard that too much calcium can give you muscle twitching and that muscles need calcium to contract and magnesium to relax, maybe is at the nerve level??? Doctor, Could spinal problems have a connection with all of these symptoms, twitching, heart palpitations, headaches, and if so what other problems besides diseases of the nervous system could you have, and are they progressing if they are not diseases? I would like to have an MRI of my spine, but my doctor says it wouldn't help or show anything that would be helpful to me. Can you have something really wrong with you spine and be able to walk, balance, and have good reflexes???
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Avatar_n_tn
thanks for your comments.

CCF Neuro MD
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