Here's a bit more on Sunflower's suggested condition, plus another one that causes non-stop headache:
Two conditions in particular that must be ruled out are spontaneous cerebrospinal fluid (CSF) leak and cerebral venous sinus thrombosis. Headache from a spontaneous CSF leak is usually affected by body position, but the longer it continues, the less apparent that becomes. Therefore, patients may not think to mention that their headache was, at one point, affected by body position, and that maybe missed.
Is it possible that you triggered a doozy of a migraine from the cleaning products you use? Chlorox has chlorine in it and that triggered one woman's migraines. Most of your symptoms sure do fit in with the classic hemiplegic headache. Some people have even had them as long as you. I don't know about that pain in your ears that's spreading to your skull though. That sounds very worrisome. I'm going to google some more and see what I can find.
Not all do but several mention it on this link. I also found mention of it at another link for these headaches. So apparently all of your symptoms, even the pain in the skull, can also be found in hemiplegic headaches. Mind you, I'm no doctor and not making a diagnosis, just an observation.
Everyone on the site sees a headache specialist. Sounds like that's what you really, really need in order to get this thing under control. Eeyore, maybe you can ask your mother to call up Medicaid about your card and ID number. You can get the ID number over the phone and then make an appointment. That really sounds like the most crucial thing for you in order to get any meaningful treatment. And the people who have the same migraines as you see a headache specialist, so it sounds like that's a good game plan for you as soon as you get the Medicaid number. You'll need to find out how to control the monster headache you currently have plus what to do to control triggers as much as possible in the future. Since you suffer from migraines and fibro, you're going to need to really try and avoid stress big time, so your mother is gonna have to get on board unless she wants to see you like you currently are all of the time.
It might help you to write down things that have triggered this type of migraine before, and see if you've done any of them this time around. Won't help to cure it this time but maybe next time.
I know we're not there yet in removing the danged headache but it feels like we might be making a bit of progress on what's causing your symptoms.
This link mentions the need for a calcium channel inhibitor for those who suffer from inherited hemiplegic migraines. However, I don't know if they are available or still in clinical trials:
Since familial hemiplegic migraines have been linked to mutations in calcium channel genes, calcium channel blockers are a logical treatment. The NIH suspects that sporadic hemiplegic migraines may arrive from spontaneous mutations in calcium channels. Traditional migraine remedies focus on limiting environmental triggers; however, controlling the environment will not stop imbalances in brain chemicals, according to the Brain and Development Journal. Fluctuations in calcium level control neuronal communications for all types of brain function. In patients with hemiplegic migraines, the brain is not able to adequately control the change in calcium, which induces misfiring of neurons that can cause seizures, stroke, paralysis and confusion. The Brain and Development Journal reports that traditional calcium channel inhibitors have had a significant effect at preventing hemiplegic migraines in clinical trials.
The link i just provided also stated that if you have seizures during these headaches that you need to see a neurologist to get them under control as they can be life threatening.
Some more info: Chronic IH is often characterized by an absence of clues. In idiopathic intracranial hypertension (IIH), there is no brain tumor, hemorrhage, cyst, lesion or blood clot found on a brain scan, no abnormalities of CSF and no localizing findings that point to injury of specific brain areas. In some cases of secondary intracranial hypertension (SIH), diagnosis may come long after the initial injury or trigger has occurred, leaving elevated intracranial pressure as the only evidence. Plus, a diagnosis of either IIH or SIH may be further complicated by the fact that a person does not exhibit all of the telltale symptoms.
However, there are some additional physical signs a physician may encounter that point to chronic IH. (A sign refers to something a physician can see, while a symptom is something a patient feels.)
Papilledema: Swelling of the optic nerves is probably the most common sign of IH. One sign of papilledema is an increased optic nerve diameter. An afferent pupil defect, in which the pupil in the eye is slow to react to light, can also indicate optic nerve swelling. Sixth nerve palsy due to elevated intracranial pressure may account for double vision and the eyes not tracking well together.
Visual field abnormality: Visual field abnormalities including peripheral and inferior nasal vision loss detected on a visual field test can be signs of chronic IH.
Empty sella: The pituitary gland, which is responsible for the body’s hormonal function, resides inside the sella turcica (cell-lah tur-sick-ah), a saddle-shaped space surrounded by the skull. Chronic IH can cause the pituitary gland to flatten against the skull bone, which gives the appearance that the sella turcica is empty.
Posterior scleral flattening: The sclera (the outer white covering of the eye) at the back of the eye can appear flattened on a CT or MRI scan, as a result of chronic IH.
Wow I never got any of that info in my searches. I am going to look into what has been said. Last night the migraine got really bad again. I wanted to go to the er but I didn’t cause I figured It wouldn’t help. It took forever to get to sleep. I tossed and turned all night. I woke up in tears and my head is killing me.
I will let u know about getting into the drs this week. Thank you so much Sunflower and Peturina for all your hard work. I can’t thank you enough.
I hope you can get an appointment with the pain clinic I agree with the others if you're that bad have someone take you to the er you need help right away
I just kept searching using different parameters. For instance "reasons for hemiplegic headaches for a month plus ear pain." Or "treatment for hemiplegic headaches." I figured that somewhere out there, there had to be an answer. It surely does sound like hemiplegic headaches can do horrible things to people on a temporary basis, including the symptoms you describe. I think it'd be great if you could find a discussion group for people with hemiplegic headaches. When you're better I'll look it up for you if you wish.
Would an optometrist be able to detect IH, I wonder? I truly hope this is NOT what Eeyorelover has. The headaches are bad enough. I don't understand why the ERs don't work more with her to find a medicine that works effectively upon a hemiplegic headache. I know it's not a common type of headache but jeez louise in today's world there's such a thing called the INTERNET that allows ER staff to look up information.
Oh, SHOOT, dear Sunflower! From all that you've said about IH, I'm truly hoping you don't have it either. Do you also suffer from migraines or similar symptoms? I'm feeling very, very badly for you, Sunny, because you're already dealing with fibro and Lyme. It's not fair that some people get stuck with all of the illnesses! I'm so hoping this one doesn't stick on you.
Please keep us posted, okay? If you do have this, I'll be happy to look up support groups, etc. for you if you're feeling too ill to do it yourself.
oh i forgot to tell you that wed. i was told i had pleurisy again. how can i keep getting it over and over. i wasnt even sick this time so i am not sure how i got it. i am starting to get sick now just what i need. please someone just let me sleep and not wake up for days. between the migraines and getting sick and they pain from my fibro and pleurisy i just want to be knocked out.
last time i was in the er and they wanted to give me the wrong med for my migraine i kinda snapped and said if u look up hemiplegic migraine every site will tell you i cant have them. i was pissed that they didnt even really try to help. i was sent home with the same pain i was in. the only thing that was better was that i have the neasua any more.
Okay, i hate to even think this but I wonder if you have some sort of immuno-deficiency going on in your body. I'm no doctor but it just does NOT seem normal to keep getting a horrid case of pleurisy plus this month long headache. Plus fibro!
I think it's time for you to find the very best hospital within your driving distance and get there immediately. No messing around with the average ones, you've got to find a doctor who is fantastic and can crack this nut, so to speak. It may cost more to drive or park there, it may take more time and be a pain in the butt to get there but I don't see how you're going to move beyond this otherwise.
If you want me to try and find a good hospital in your area, I will. I know your ability to do stuff is seriously compromsed by now.
One reader states that pleurisy is a diagnostic criteria for lupus. Have you been tested repeatedly for lupus? One or two test might read negative but you might still have it. Some people only test positive when they go out in the sun and inflict a flare on themselves.
It states the following about headaches: Headaches are a major feature of lupus. In some patients a history of headaches or a typical migraine go back to the patient's teens and pre-date the diagnosis by many, many years. There is almost certainly a variety of causes of headaches in systemic lupus. One specific and important cause is 'sticky blood' caused by the presence of antiphospholipid antibodies (see the fact sheet on antiphospholipid syndrome or Hughes’ syndrome).
About pleurisy, it says:
chest pain (pleurisy is, for example, important in active lupus)...