Had a bad night yesterday Living with a constant daily headache is enough to...

This stuff has just made me a different person. Hindsight, I would have told them when we started and asked them to bear with me. Telling them during just made me wonder if they thought I was really dumb and left me wondering if they really believed me.

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  • I hate when people think I'm dumb. I was a pharmacist. A really good one. And my best quality was being able to talk to patients and explaining things to them in a language that would help them to better understand their medications or their conditions. Well when you have to search for every word you want to use, you don't come off as very knowledgeable or trustworthy. That was the hardest part for me. I don't work anymore because of other medical issues, but I'm only 46, and I know I'd never be able to do my job anymore because I've just become too damn stupid! And no one else would understand that except for people suffering like we do. I'm so sorry your night was ruined. It's really not too much to ask to have one normal night out with friends. Maybe this will be a funny story you all tell one day when you all get together again, margaritas in hand! ❤️❤️❤️

  • We have to find a cure. My daughter who is 13 has had a constant migraine for 2 1/2 years. It has taken her life from her.

  • So sorry. Cannot imagine it for someone so young. I remember thinking I was an anomaly. I didn't think anyone could have a constant headache for over a few days.

  • I was a college vice president when these headaches took it all. Thank you for your post. It is so good to have perks understand my frustration. I would have killed at the game we played and I couldn't get words out. Stl, making me cry. Lol

  • I'm so sorry. My son started having severe migraines when he was 9. Being a pharmacist and a NDPH sufferer, at least I knew what to tell the doctors to do. But seeing your child in that kind of pain is beyond heartbreaking. You would do anything to take all the pain on yourself. He missed so much school and was falling behind making the stress worse. It's such a vicious cycle at that age. I truly hope your daughter finds relief very soon.

  • She has been diagnosed with ndph and chronic migraine. We've tried med. homeopathic chiropractic. Pt molecular biochemist with strict diet and supplements. Nothing is helping. Any suggestions?

  • I haven't worked for 6 years. My boys are teenagers now, so they are used to me being a stay at home mom. They tease me for sitting around and doing nothing all day and never being able to remember anything, but sometimes it really gets to me. I was in the middle of a promotion when a back injury took me out of work. Every once in a while I have to remind myself that I was really intelligent damn it! Though now that I think about it, maybe staying home with two boys sucked the smarts right out of my brain

  • My son was terrified of needles and was already so stressed out, I didn't want to put him through the DHE route, which I'm assuming you've already tried. So I begged the pediatrician for oral steroids because inflammation has always been a key factor in all my ailments. And they really helped. By then we had an appointment with a neurologist who put him on amitriptyline at bedtime and Zomig for rescue. He's 15 now and doesn't take anything anymore.

  • Where do you live?

  • Long Island. Ny. We've been going to mt Sinai hospital pediatric headache center. They recommended Botox. We haven't heard good things and she's so young.

  • :-D I haven't worked for going on 4 years. Lost the best earning years of my career and was starting a promising consulting business. It was my dream job because I was in a real position to make a difference for students. Sucked. I had a hemorrhaging pituitary tumor. Headaches were supposed to go away after the surgery but they didn't and have gotten worse.

    I survive by trying to put it in perspective and by reading posts on support groups. Setbacks suck.

    But it really sucks cuz intelligence was pretty much my only claim to fame. Lol. Find myself lost at home expecting appreciation or acknowledgment for cleaning the fridge. :-)

  • Well I've certainly heard wonderful things about Mt Sinai, though not specifically about the Headache center. And I think she's too young to see Dr. Rozen unfortunately.

  • I hung my very important looking pharmacy diploma in the kitchen for just such moments!

  • I understand. It's happened to me. To many if not all of us. Sending hugs and love from Vermont.

  • Tysm. My husband and I just looked up dhe. Will talk to dr about it. Who's dr rozen? Will try to look into it. We're desperate.

  • Thank you. Hope you have a good day

  • DHE is first line treatment! Maybe they haven't tried it due to her age, but it's given IV either in the hospital or outpatient in an infusion setting. It's a very strong vasodilator. It shrinks all the blood vessels thereby reducing the volume of blood in the brain. It also takes the blood away from the extremities making you cold and sometimes making it difficult to find a vein. But oftentimes the headache is because of all pressure of all the fluids in the head taking up too much space. That's why DHE is so effective. It's pretty much all that works for me. Some people get relief with one dose, some need a dozen. It needs to be given with something for nausea because it will cause that. I would ABSOLUTELY ask your doctor about it! Dr. Todd Rozen is THE NDPH guy. If you look at any articles, you will undoubtedly see his name in the studies in the footnotes. I was exceptionally lucky to have him as my doctor in Michigan in 2008 at the Michigan Headpain and Neurological Institute. He was treating teenagers and adults there, but he's at Mayo in Florida now. I've read other people in this forum say that he can't see teens there because he's running a drug trial. I don't know if that's true for certain.

  • Wow. Thank you so much. The first two years of her illness we ran tons of tests. Found nothing. I quit my teaching job because I had no choice. Now I'm back to tracking but am considering leaving again to be with her and teach her how to cope/function with chronic pain. Everything we've tried has led to a dead end and drs are saying there is no cure

  • MHNI is unique in that they have an inpatient treatment clinic in a cute little town called Chelsea. It's in a wooded setting, so it's serene and quiet. Although it's inpatient, you are expected to get up and function every day. Instead of the doctor going on morning rounds, the entire staff met in the community room and patients went in one by one. Every single person involve with one's care knew exactly what was going on. Then you might go for a morning hike in the woods. There were several classes during the day, medications, coping skills, special pillows, massaging techniques, etc. The group would go to the cafeteria together to eat instead of trays being brought to the rooms. Laundry facilities were on site. Now don't get me wrong, if you are really hurting, you are certainly able to stay in bed and receive treatment and food. It's still a full service hospital with outstanding neurosurgeons. While I was there I received rhizotomies which were very helpful because my headache stemmed from a previous neck injury sustained in a car accident. My mom stayed the whole time. The area hotels offered discounts to families. There were a bunch of darling shops and restaurants. The grounds were beautiful. Keep in mind it's been nine years since I was there, but if you made a new post asking about people's experiences there, you'll get many more opinions. One man there had relief in one day. I was released in 12. Others were there three weeks with no relief. After I completed treatment there, I moved to Reno, so I never had the opportunity to follow up there. If I needed serious help again, I'm honestly not certain if I would go to MHNI or Dr. Rozen. I think either would be an excellent choice.

  • Please feel free to message me directly if you ever have any questions ❤