Please help me with my mystery diagnosis...I am ready to pitch a tent and live at the ER!!
32yo female, 120lbs, 5'3" Normally active & healthy (until this past month) Phoenix, AZ
I have lived with mild to moderate headaches 4-5 days per week for the past several years. Pain managed by Advil. However, about a month ago, I started having excruciating, debilitating headaches, and stopped taking Advil because I was taking 600-800mg a day to get some relief. I was worried about causing rebound headaches with the Advil.
These headaches cause me pain on usually one side of my head (usually right side), behind my eye and forehead, as well as in the occipital area of my head (top of my neck). My forehead and eye areas are painful when I massage them. I have nausea, vomiting, as well as some light and smell sensitivity.
My sinuses normally feel "stuffy", and I get good relief from Mucinex D. Thus, I have always assumed I have sinus headaches. However, I had a CT Sinus 3 years ago that was completely normal, and I just had another completely normal CT Sinus 1 week ago as well as a CT Head with contrast (completely normal) and a spinal tap (unremarkable). An ENT said I have no signs on exam or tests of a sinus infection or inflammed turbinates, etc. Per these tests, I'm fine, however, I am now suffering from daily, excruciating headaches, causing nausea & vomiting that have sent me to the ER for the past two Saturdays begging for help. Both times I was given an IV "migraine cocktail" (anti-inflammatory, painkiller, nausea medication), which stopped my headache within minutes. I was given Fioricet on my first ER visit (2 weeks ago) and took it for one week. It took away the headache, however, I have to drive a lot for work and it made me very drowsy and dizzy, and each day I needed more Fioricet to control the headache (started with 1 pill per day, on day 7 was taking 1 pill every 4-5 hours). So, I stopped the Fioricet, and ended up in the ER again a few days later after spending the night curled up in a ball with a horrific headache and vomiting several times.
1. Do I have migranes? A neurologist started me on a 6-day prednisone pack and Maxalt 6 days ago. The Maxalt helps mostly, but I need to take it daily, sometimes twice a day to get relief, which is too much for this drug. 2. Do I have severe sinus headaches with totally normal-looking sinuses? Out of the prednisone, Maxalt, Advil, and Mucinex D, the Mucinex gives me the best relief from my headaches (usually almost all day).
3. Do I have rebound headaches? I have taken 400-800mg of Advil daily for a few months, but for the past 2.5 weeks have not taken any- only the meds prescribed at 1st ER visit (Fioricet) and then what was prescribed at neuro visit (stop taking Fiorcet, instead take Maxalt 10mg & methylprenisone pack). So could I be having rebound headaches 2.5 weeks after stopping Advil that cause me to be in severe pain, vomiting, and unable to go to work?
I have had appointments with primary care, ENT and Neurologists, everyone thinks they are probably migraines, but doesn't know what to do with me to control the daily debilitating headaches that have made me a depressed recluse who lives in a dark bedroom.
Please help me...any educated ideas, thoughts, suggestions are immensley appreciated. I am desperate to have my life back. Thanks.
First has anyone ever checked you for food allergies or intolerances gluten(wheat, barley, rye) and dairy are huge migraine triggers. (some other triggers can include nitrates/nitrites-- processed meat, high fructose corn syrup, caffeine, soy, nuts, and sulfates/sulfites) You might want to keep a food diary if you have done so in the past. Also if you have anything w/artificial sweetener this could cause all your symptoms. (I cannot even have a 1/2 piece of sugarless gum.) By the way there is artificial sweetener in Maxalt. Third have you had a MRI? Also has anyone ever considered the possibility of endometriosis or if you are taking it-- birth control? I know my endo is back when my migraines get worse.
In addition to what achillies wrote here are a couple of more thoughts to consider:
1) Have you had a good thorough blood test panel so that your thyroid and other organs could be evaluated? While there are many good Doctors in Family Medicine, it would be good to find one that is certified in that area such as endocrinologist or a Doctor that thoroughly believes in blood screenings. My familiy doctor is one who thoroughly believes in these tests and actually is the testing medical director for his group practice.
2) Have you ever suffered any type of head concussion or head injury?
3) Do you spend time in the sun? I notice you are from Arizona and I recall seeing quite a few individuals from there and Florida who have sun induced headaches - this is no joke for some people.
Thank you all for your posts. I'm writing this while I sit in the ER for my 3rd time in 3 weeks, hooked up to my "migraine cocktail" of diluaded, zofran, toradol, & decadron. I don't even know what the last 2 are, but I'm finally headache free, at least for awhile. It always comes back several hours after this IV.
To answer your questions, I have had a CT of my head with contrast, but no MRI. Should i request this? Its so difficult here in the hospital to get any explanation from the doctors, they just give me drugs and rush me out of here.
They have drawn blood, my paperwork shows a "CBC with Diff" and apparently that was normal. I will ask for the thyroid & organ check- thank you for the suggestion.
I have no head injury, but I do take Loestrin (birth control pill). As far as sun exposure, I do not try to get sun, but I drive around making deliveries for work, so I am in and out of my car all day. It's hard to tell if I get heat headaches, because I have them everyday.
Thanks for the food allergy suggestion. I have never been tested. How do I have that done.
I appreciate your help so much. I'm sure many of you can relate, but I am
at my wits end and so frustrated with the never ending pain.
First you can get your gluten antibodies tested-- blood test for Celiacs. (But even if it comes up negative that does not mean that you can have gluten.) The golden standard is an upper endoscopy by and gastroenterologist. If even that comes back negative after than you can try a gluten free diet and see how you feel.
To check for food allergies your best bet is an allergist immunologist. Some test the blood while others do a skin test.
When you get your thyroid tested be sure to that includes testing free T3 and thyroid anitbodies.
A MRI gives a more detail picture of the brain than CT scan so that is something you might want to consider.
As far as birth control that can be a huge migraine trigger. I must avoid all birth control.
Hi. So sorry to hear of all your problems... I could have written your post!
I was wondering if you have ever heard of Hemicrania continua? It is a very rare, unilateral (one sided) headache that varies in intensity. It can cause pain in the eye, watering, a feeling of grit or sand in the eye, stuffy nose, runny nose, pain in the head, face, upper neck that can be a dull pain that is interspersed with sharp, stabbing pains in the face. Numbness, slurring, etc can also be present. It does not respond to narcotic medication or triptans. It is usually diagnosed after 3 months of pain, at least. It responds very well to Indomethacin, an anti-inflammatory medication that is usually prescribed for gout or severe arthritis. My understanding is that the inflammation causes pressure on a vascular nerve, which triggers the pain and other symptoms. Very few neuros are familiar with this disorder and you need to find a neuro that specializes in head pain, usually at a teaching hospital. In average, it takes 6 different drs before it is diagnosed, with an average time before diagnosis of 3 years.
I am 45, have had migraines with aura since puberty. I have never been able to take any type of birth control med because of the head pain that
follows. I had a significant increase in migraines as I reached my 40's. After a complete hysterectomy 3 years ago, I developed this condition. I was diagnosed about three weeks ago, after my first hemiplegic migraine. I was started on the Indomethacin and had a complete pain free week for the first time in three years!! However, the pain has returned to some degree (iI was warned of this happening while the correct dosage was obtained to keep me pain free) and am now on 25 mgs 5x/day. I will probably increase to 200-225mgs/ day before I am done. Just to let you know, I have done the topamax, imitrex, neurontin, nortriptyline, epidural, botox, etc route and NONE have worked like the Indometacin. It can be very hard on your stomach, but if you do it slowly and be sure to take with food, as well as a prescriprion antacid, it can be done.
I hope this isn't too long, just wanted to let you know what I, as a fellow sufferer, have found out through all of my research and personal experiences.
I wish you well in your journey to be pain free. Let me know if I can help.
You can also do the "Elimination diet". Remember, the food for one can be the poison for other. This diet suggests eliminating Soy, dairy, eggs, corn, gluten, yeast, for at least 3.5 weeks and then incorporate one by one, monitor and observe yourself, but to get a better understanding of this diet, see a nutritionist
An elimination diet involves removing specific foods from your diet that may be causing allergy symptoms. Common allergenic foods include soy, dairy, eggs, fish, shellfish, caffeine, wheat and nuts.
Elimination diets typically involve removing suspected foods for a period of time (from two weeks to a few months) and observing if the symptoms improve. If the symptoms resolve, the foods are reintroduced back into the diet one at a time to see whether the symptoms reappear. Keeping a food diary is suggested to record any adverse reactions after eating the eliminated foods.
True food allergies can affect the immune system and cause immediate symptoms such as hives, rashes, puffy eyes, vomiting and even anaphylaxis. However, many people suffer from food intolerance, and symptoms can sometimes be delayed – even up to 2 days after eating the suspected food. Food intolerance symptoms include indigestion, heartburn, nausea, cramps, headaches, fatigue, etc.
1. “Elimination Diet and Food Challenge Test for Allergies .” WebMD.com. 2 December 2011.
2. “About Food Allergy .” FoodAllergy.org. 2 December 2011.
Hi,did you ever finally figure out what's wrong b/c I'm going through the exact same thing but I was in the ER for a week straight everyday not even the cocktail helped until finally a doc called neurology and gave me another cocktail with magnesium that helped.but now they're back! Ct scans were normal.i have chronic sinusitis but specialist told me it shouldn't cause this much pain????
This answer is to the original post even though it was posted 3 years ago.
Yes, you have migraine. With high probability. For you they have turned more or less chronic. I get a little bit upset when I hear about all the tests you had to take, because to me it feels like they were mostly unnecessary. This has nothing to do with your sinuses. The migraine causes you to think that it is sinusitis. It is ok that you believe this, but a skilled doctor should see the difference. You have all the symptoms of migraine, almost.
You need to see a specialist who can help you and get you out of this viscous cycle, otherwise you will spend every weekend in the ER. Try to read up on this condition as much as you can also, if you have the strength. Or maybe you can get a loved one to study for you?
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