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Severe Life-Altering Headaches With No Diagnosis

Hi, my name is Alli. I have a slew of auto-immune disorders including lupus, fibromyaligia, endometriosis, and Hashimoto's hypothyroidism, I also have achondroplasia, the most common type of dwarfism. I've had lupus since I was 12, endometriosis since 11, fibromyalgia since 16, and just got diagnosed with the hypothyroidism this past year. I've had headaches ever since I was diagnosed with lupus, and since then I've been calling them my "lupus headaches", They appeared on and off for a number of years, but never really seemed to stay around long enough to stay worried. In the past 2 years though, they've gotten increasingly worse. I have a wonderful neurologist in town and also one out of town. They have been working together over the last few months on specialized CT scans and MRI's. Let me describe these headaches before I go any further. They typically begin either in the morning when I wake up or if there's an increase in stressors. They start in the front of the head, either on one side or both, then go to the top of my head all the way to the back of my head. This is when things get really intense. The back of the head is the most painful, usually followed by intense nausea and pain down my spine. We know it's not MS or sinus, But the kicker is that the headaches get INCREDIBLY worse if I lie down. Anything that is against my head makes the pain 10 times more excrutiating than it already is. At one time I was able to hold my head back and open my mouth and it seemed to briefly take the pressure off, but now my neck and spine are so painful due to the headaches, lupus, and fibromyalgia that doesn't help anymore. The neurologists were concerned because of my dwarfism that it might be excess fluid building up when lying down, instead of just a plain migraine. So we did the CT scans, the MRI's and partial MRI's with ceni-flow, emergency room visits, neurontin and flexarill, and now my rheumatologist took me from oral MS contin to the fentenol patch. This last MRI, the partial with ceni-flow, came back negative. This means the last step for me is a pain clinic. My rheumatologist is working on that now, but I'm wondering if there's anyone else out there that has this pain or comes even close to understanding it? I have ER docs not taking my pain seriously, I've got my other docs and parents and husband at a loss at how to help me, and I cannot function period when these headaches are happening. I feel up a creek without a paddle and I feel completely alone in this pain. If anyone can offer any thoughts on this, I would greatly appreciate it. Thank you so much.
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I have had bad migraines for 20 years, sometimes lasting for days..even after taking Zomig and other things..my doctor started me on a medicine that blocks nerve pain and keeps pain from happening.. I have dystonia and myoclonus with 3 herniated disks that keep my headaches coming back all the time..This medicine works to block a lot of pain..Ask your doctor a bout "lyrica", it has just been approved for nerve pain and diabetic nerve pain as well as other uses..also..your symptoms sound a lot like a "rebound migraine", or even a "suicide headache" (cluster migraine) either can be so very painful you want to commit "suicide! I have experienced both of these..I remember that the doctor changed my medication because of pain from herniated disks, and my headaches suddenly started to intensify and I had them almost every day about 1am or later.change in medicine and also too much potent painkillers..like fentanal (took that,too) can cause horrible headaches if you discontinue to fast. ms contin has a bad reputation for addiction even when you withdraw gradually.. I did a quick test..I had a bad migraine that I thought might be from a withdrawal of medication and I simply took about a quarter of a tablet (a pinch) of the medicine I had been on to see if my headache was caused by withdrawal. if it goes away or gets better after 15 min or so.. you have your answer.
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Avatar universal
Yes, I understand your pain. I recently starting getting this headaches as soon as I get up. They are really bad, but go away after a while.  I also have Lupus.  Mine also get worse when I lay back down.  I'm on lot of meds so I'm going to look into the possibility they could be causing this.  Are you on Immuran?
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