Hello @bostonsanfran, welcome to Connect. We are glad you found this discussion to add your experiences to. By posting your thoughts, members who have previously posted in this discussion will get a notification and we hope to see them add their thoughts soon.

While you wait for your appointment with neurology, have you noticed any improvement with eliminating caffeine, alcohol, and gluten from your diet?

Hi @bostonsanfran Did your MRI show an arachnoid cyst? I have that as well and I struggle with the fact that it is an "incidental finding" yet I am diagnosed with NDPH. Especially since a lot of my pain often stems from the location of my cyst. Just curious what you have been told.

Hello @kstream, and welcome to Connect. While we wait for @bostonsanfran to answer your question about having an arachnoid cyst, I thought you might be interested in checking out these discussions that took place in the past regarding arachnoid cysts,

- Nowhere to turn for answers, http://mayocl.in/2mc8q7X (great posts with sources about arachnoid cysts)
- I am desperate to find a dr who treats arachnoiditis, http://mayocl.in/2lv8wYj

@kstream, have you discussed your concern that your pain seems to stem from your cyst?

Sorry for my long delay in replying. Since my original post, I have been through a series of tests and consultations. While my MRI did show a small (likely congenital) arachnoid cyst, I was told it was too small and in the wrong location to be consequential to my headaches. My neurologist has put me on increasing doses of Amitriptylene. I'm now at 50mg, and it is helping with the headaches. Rather than every day, I'm probably getting the headaches 4 times per week. On the days I don't get the full headache, I will literally feel the headaches on the verge of breaking through - but they remain suppressed as a shadow of a headache - is this makes sense. The doctor also provided Fioricet as an emergency pill for emerging really bad headaches. This definitely works, but I use it very sparingly due to potential dependency issues that can develop.

So I am encouraged by the progress, but the side effects from the meds is unpleasant. I have also found my challenge with tinnitus has worsened over the same time period. Not sure if this might be related to the Amitriptylene, but it certainly feels like I'm playing whack-a-mole. I came back to make this post as I wanted to share some optimism regarding limited success with medication.

So sorry you're going through this kind of headache horror. I too have been through this roller coaster since I was 30, I am now 63. It has completely changed my life and how I live it. I know exactly what you're saying about the headache not being there, but hovering and just waiting.

I have tried all the drugs practically on the market including many of the antidepressants, anti-convulsantives, and many I don't even know what therefore. Generally the side effects get to be too much and I stop.

I can't say it's a miracle,but Botox injections in your head and neck help tremendously, Fioricet/Fiorinal or either +codine used cautiously work. You didn't mention Imitrex that was a Godsend for me. I would hardly leave the house until Imitrex came on the market. The other thing that helps a lot when it gets to the point where you feel like you can't stop it, is ask your doctor or you can go to urgent care and get an injection of Toradol. It is not a narcotic it's an anti-inflammatory but it helps tremendously with migraines. I also have my own TENS device, you can just get them from Amazon at this point and they give slight electricity to the area and it helps to lighten up. I use a lot of ice packs and lay on them until it numbs the area. That helps a lot.
Best of luck, that's the bottom of my bag of tricks and I'm so sorry that you're going through that. These headaches have really change the map of my life. Good luck, my heart really goes out to you, Jennifer

@jenapower Thank you for all the information you provided to headache sufferers. It sounds as if you have worked hard at controlling the pain and I admire your persistence! I found your phrase, "These headaches have really change the map of my life" as an excellent word-picture for everyone who suffers from chronic pain and illness. It seems like you have developed a great attitude and have tried a lot of things to find relief! Teresa

@bostonsanfran Thanks so much for the update. I'm glad to hear that you are making some progress with the headache pain. Does you doctor think that the tinnitus is related to your headaches? Have you consulted an ENT doc regarding the tinnitus? That might be helpful. Best wishes to you and thanks for letting us know how you are doing. Teresa

Thank you for your kind words, they actually make me feel better. Although I have done everything I possibly can, I also have fibromyalgia, multiple broken bones, multiple surgeries, a few messed up discs and I'm in chronic pain every day. The headaches were the first to happen, but I've had two bad accidents that have broken many bones and have had multiple surgeries to put me back together again. From all of that, I guess I developed fibromyalgia and I'm in constant pain. It really does change the fabric of your life, and friendships. Your social life becomes doctors, physical therapists, and chiropractors. You lose a lot of people along the way and it is very hard on all your relationships, it can make you sad. Most the time I try to have a good attitude, and I'm always looking for new solutions. Although I say that, there have been plenty of tears shed along the way. I just remember a point in my life when I was in my 30s when my friends would go to the big city shopping and I wouldn't go for fear I would get a migraine headache that would be incapacitating and I'd have no way to go home. Imitrex actually made it possible for me to go on those excursions and it was a Blessing.

I didn't mentioned in my first post, that I also go to physical therapy once a week to keep as much moving and stretched as possible, when I need to I also go to the chiropractor. That isn't to say I do not use pain medicine, because I do. I think I wouldn't function without it and you can tough it out for a while, but eventually you need to do what works for your life. Thank you for the comments. I just felt so bad for her when I read her post. I've been in the exact situation.
Blessings, Jennifer

@jenapower I'm continually amazed by folks like you who are able to rise above your circumstances! You display resiliency and that is a key to getting through the tough times in life. Keep sharing with us at Mayo Connect, your story provides inspiration for all of us! Teresa

Thank you, I'm not very good at this I feel very out of my element. Took me a long time to start to say anything. It's just hard when I see people in similar circumstances to myself looking for answers that I might have a tiny tidbit that would help. I know I would appreciate that and if I can do anything to help, that wouldn't make me feel like what I go through, isn't without reason.
Jennifer