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Need advice on next step

Hello. I need some help with possible diagnosis or what I should consider doing next with my problem. I'll try to explain everything that has happened in chronological order to help understand where I'm at now. I moved to a new house about a year ago, since last October, only 30 miles away though. Late in January I had a major migraine that I have never experienced before, and I needed to go to the ER for it because I was throwing up everything I ate. I kind of just blamed this on some lifestyle habits, maybe too much caffeine or pizza at once. The only change I made was switching to Sprite full-time, and mostly abandoning caffeinated sodas.

I noticed that I was getting slightly more headaches than was normal for me during my spring semester at school. But there was nothing that really grabbed my attention until after summer was over. This past fall, I have been having plenty of nasal... congestion? There's no snot at all, but it just feels like the nose is closing in on itself. Only one nostril is affected at a time, and I noticed I would get headaches on the same side like clockwork. I originally attributed it to allergies of some kind, though I usually never have synus issues unless it's spring-time.

Sometime during October I had a major migraine again that put me in the ER. I started seeing neurologists. They mostly just put me on drugs to see if they would work without making an effort to try and solve the issue. The nasal clogging started occurring much more often, to the point where I would get a headache 5 times a week, and they would always be extremely debilitating.

I went to an ENT because I felt like the issue lied somewhere with my nose. He initially said I have a deviated septum, but wasn't sure if surgery would fix the headaches. I was put on a nasal spray and singulair to help with possible congestion and allergies. The singulair helped me a ton for about 4 days, then it seems like my body got used to it or something because it stopped helping. The nasal spray doesn't help with the headaches either, but I'm instructed to keep using them because apparently my nose is better than otherwise with them. We also had allergy testing and found that I'm allergic to molds and various trees. But I'm still fairly close to my old house so I don't see how anything has changed in the natural setting. As I have moved through the winter, the migraines have become even worse. I was eventually put on Diltiazem to regularly prevent headaches. For the first 4 days this seemed to solve the problem entirely. But then I had a MAJOR migraine, early December. I had to go back to the ER again. I didn't want to believe that this powerful headache preventative wasn't working. I assumed that I strained my eyes too much the day before by flying aircraft at high speeds in video games (which I did). But after that incident, I kept getting insanely strong migraines every single day.

As always, I wake up with one nostril clogged, and the headache develops shortly into the day and lasts until night. This is the formula every time. Sometimes when I breathe into this Vicks humidifier, it helps the nose breathe a bit better, which seems to lesson the migraines. It seems like the migraines just keep getting more frequent and more powerful. Just recently I had a migraine that should have put me in the ER for the 4th time, but I didn't let the pain get far enough to cause me to throw up everything. This time I know it's not eyestrain, because I've placed a limit on myself for a few weeks as a test and have mostly bee playing puzzle games. What surprised me is that I was still regularly taking Diltiazem, and I took both Vicodin and Ibuprofin to combat the headache earlier on. Even all of those extremely powerful drugs couldn't stop the pain from bleeding through. *Nothing* could stop it until it went away on its own like 15 hours later.

The ENT thinks my problem might be allergies or just a history of migraines in my family without a cause. I feel like the migraines are caused from a lack of oxygen entering the brain. It just feels like I get relief when I somehow force myself to breathe, but the nasal passage is usually sealed off with its own swelling. I'm getting fed up and scared at the same time. The problem just keeps expanding.

Can anyone tell what kind of headache this is? I get the migraine on the forehead of the side of the nostril that is currently having trouble. The nostrils typically alternate, though right-side headaches are the more severe ones. In addition to the forehead, I notice them on the side of the face where your glasses would press against. I am very eager for something to be done, and I am contemplating just correcting the deviated septum with surgery because it really feels like the problem is in the nose in some way. I want to at least get that variable out of the way. I really don't think it's allergies of any kind, but don't really know what else it could be.

  1. Autonomic symptoms like the ones you describe can happen with a lot of different types of headache disorders. It is critically important that you consult with a true headache specialist in order to get a proper diagnosis. We at Migraine.com are not headache specialists, but patients who offer encouragement and education. We cannot begin to diagnose your headache problem.

    However, we can point you in the right direction to get the answers you seek. For starters, these articles can help you in your search for a headache specialist in your area.

    https://migraine.com/blog/how-are-migraine-specialists-different/
    https://migraine.com/blog/making-decision-see-headache-specialist/
    https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/

    Please keep in mind that not all headache specialists are listed in these directories. That is why is it so important to educate yourself about headache disorders so you will know how to be a good consumer of headache medicine.

    The next most important information I can give you would be to help you start to learn about the different headache disorders, their symptoms, and treatments. You refer to your experience as migraines. Have you been diagnosed with migraine?

    https://migraine.com/migraine-basics/
    https://migraine.com/headache-types/

    Lastly, I want you to understand that migraine is a genetic, neurological disease. It has no known cause or cure at this time. Trying to find a cause for migraine is wasted effort. Leave that to the experts who research headache medicine. If you'd like to help find a cure, there are lots of ways you can donate to headache research or help increase awareness of the need for more research. We all hope and pray for a cure in our lifetime. In the meantime, it is possible to manage your condition by avoiding triggers, making lifestyle changes, and using an appropriate amount of acute and preventive medications to treat your condition.

    Look here for the basics:
    https://migraine.com/migraine-causes-and-triggers/
    https://migraine.com/migraine-treatment/
    https://migraine.com/migraine-symptoms/

    I realize this is a lot to digest. Please take your time. Ask any questions, even before you get through all the links.

    Tammy

    1. My migraines didnt show up until I was over 50. And they are somehow related to post traumatic/deployment HA. Despite that everyone insists they are genetic all the peer reviewed research I've read carefully states "may" be hereditary. Although now everyone just makes blanket dogmatic statements that they are like the mod above.

      As tammy states: you need to be followed by a GOOD specialist. Welcome to the process of trial and error.

      Things I've done on this journey so far:
      Migraine journal w al s/sxn aura, meds, duration

      Eliminate ALL added sugar, ALL grains (and glutenl, ALL bread (accept rice bread)

      On a organic, whole, paleo diet

      No soda or beer

      Lots of water

      Taking B2, Mg, CoQ10

      Refer to your MD of course b4 doing anything I advise. Sorry you have migraines. Really I am. I've lost my career over them. Now I'm considering education and work that pays well yet can do from the home, part time, contact basis, telecommute etc.

      God bless

      1. New studies on the link between early childhood trauma and migraine suggest that in some people, the genes responsible for migraine may be present, but dormant. It is suggested that traumatic events can actually alter our DNA by turning "on" dormant genes even later in life.

        Tammy

        1. Good point, tammy

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