I’m so glad I found you - you’re so damn resilient and stunning and positive. I’m so sorry you had to just sit there in class that long just dealing with that pain. 😰 I just got diagnosed recently, so I guess we’re in a very exclusive club lol. I’m on indo too, and I started trying a chiropractor and acupuncturist. Is your osteopath working out for you?
Hello!! Thank you so much for your comment 😊❤ how is the indomethacin working for you? And the acupuncture? The osteopath was amazing for my neck pain as well as the headaches. In the first week of seeing her I could count the amount of headaches I had that week on one hand - which i could never do before! Since then there have been some ups and downs but currently I am doing really well. I am not on any medication and I very rarely have headaches these days, praise God. I'd love to hear more about your journey 😁
@@MecheShannonPhillips I am SO happy to hear that!! Thank goodness. In my research it seems to possibly be linked to the cervical spine and an exaggerated inflammatory response, so the Chiro and acupuncturist have been super helpful. It’s been up and down for me too, but it’s more good days than funky ones. We should talk sometime, I would love that! Can I email you?
It's so hard to find people who have this condition, I've had it for 8years now and I can't tolerate indomethacin so I'm in pain every day having attacks. Is there anything that helps u? I put a hot water bottle on the side of my head witch really helps. I hope u are ok and thank u for the videos x
How were you diagnosed with Chronic Paroxysmal Hemicrania? My neurologist has prescribed me indomethacin, for nine days (I’m on my second day so far) and he says if I respond to this medication, it will help them diagnose me and come up with a pain management plan. Neurologist have been prescribing me mostly migraine medications that have done nothing to give me relief. I’m feeling desperate. I have been having this pain for over a year and as of late I have it every single day and for most of the day. Very severe. It makes having any type of normal life interaction almost impossible. What were some of your symptoms and how long before you got a proper diagnosis?
Hi there. Thank you for your message!! Some of my symptoms or triggers were when eating sugar, cold water (drinking/brushing teeth), cold weather, wet hair, strong perfume, lack of sleep, dehydration, and sometimes sensitivity to light. I had piercing headaches in my left eye and eyebrow that also spread to the left side of my neck and jaw. I had these on and off for three years before I went to my gp. I had thought that the headaches were just my sensitivity to cold as they were worse and more frequent in winter. My gp immediately referred me to a neurologist (but there was a waiting list of 4ish months). My gp treated me for cluster headaches in the mean time and that medication usually made my headaches worse. I struggled with finding relief from the indomethacin as even the lowest dose he gave me made me very tired. Over the next two years my dose increased and I was managing well. I have been to an osteopath as well, how helped relieve the tension in my neck. That helped me a lot. I have not been on medication for the last year and a half and have only had a few headaches a month. I am so grateful that I can manage those days without medication. I hope that you find relief. This is a horrible condition.
Yaaasssss x
I’m so glad I found you - you’re so damn resilient and stunning and positive. I’m so sorry you had to just sit there in class that long just dealing with that pain. 😰 I just got diagnosed recently, so I guess we’re in a very exclusive club lol. I’m on indo too, and I started trying a chiropractor and acupuncturist. Is your osteopath working out for you?
Hello!! Thank you so much for your comment 😊❤ how is the indomethacin working for you? And the acupuncture? The osteopath was amazing for my neck pain as well as the headaches. In the first week of seeing her I could count the amount of headaches I had that week on one hand - which i could never do before! Since then there have been some ups and downs but currently I am doing really well. I am not on any medication and I very rarely have headaches these days, praise God. I'd love to hear more about your journey 😁
@@MecheShannonPhillips I am SO happy to hear that!! Thank goodness. In my research it seems to possibly be linked to the cervical spine and an exaggerated inflammatory response, so the Chiro and acupuncturist have been super helpful. It’s been up and down for me too, but it’s more good days than funky ones. We should talk sometime, I would love that! Can I email you?
@@cleanslatemed yes of course!
Mechesannon@hotmail.com
It's so hard to find people who have this condition, I've had it for 8years now and I can't tolerate indomethacin so I'm in pain every day having attacks. Is there anything that helps u? I put a hot water bottle on the side of my head witch really helps. I hope u are ok and thank u for the videos x
How were you diagnosed with Chronic Paroxysmal Hemicrania?
My neurologist has prescribed me indomethacin, for nine days (I’m on my second day so far) and he says if I respond to this medication, it will help them diagnose me and come up with a pain management plan.
Neurologist have been prescribing me mostly migraine medications that have done nothing to give me relief.
I’m feeling desperate.
I have been having this pain for over a year and as of late I have it every single day and for most of the day. Very severe. It makes having any type of normal life interaction almost impossible.
What were some of your symptoms and how long before you got a proper diagnosis?
Hi there. Thank you for your message!!
Some of my symptoms or triggers were when eating sugar, cold water (drinking/brushing teeth), cold weather, wet hair, strong perfume, lack of sleep, dehydration, and sometimes sensitivity to light.
I had piercing headaches in my left eye and eyebrow that also spread to the left side of my neck and jaw. I had these on and off for three years before I went to my gp. I had thought that the headaches were just my sensitivity to cold as they were worse and more frequent in winter. My gp immediately referred me to a neurologist (but there was a waiting list of 4ish months). My gp treated me for cluster headaches in the mean time and that medication usually made my headaches worse.
I struggled with finding relief from the indomethacin as even the lowest dose he gave me made me very tired. Over the next two years my dose increased and I was managing well.
I have been to an osteopath as well, how helped relieve the tension in my neck. That helped me a lot.
I have not been on medication for the last year and a half and have only had a few headaches a month. I am so grateful that I can manage those days without medication. I hope that you find relief. This is a horrible condition.
are you using endol because it works sometimes
Hi there! Endol? At the moment I am on Indomethacin. I find that Indo works the best for me. :)