Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for importantcargo @importantcargo

That is my point. I have chronic 24/7 migraine That MIMICS moh headache. I dont take anything for pain. If I take an aleve, my pain level will go to 10. So, you pick. I have never heard of this. Searching for somebody who has.

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Sounds like an allergy to those meds, to me. But then I do lots of chemical allergies. I've had moh migraines, but not for years. They lasted from 1990 thru 1995. I did have some months off in there. I used to live on the floor of my bedsit (back then), for most of 3 days at a time. Getting up and stuffing some food in my mouth and wash it down, or carefully walking to the bathroom, and then laying back down. The few days off from the pain were spent getting more food and necessities, refilling my prescriptions, and then enduring whole days (or more) of it, all over again. It is truly horrible stuff. And it would sometimes happen 3 times in a week, 3 days of it, at a time. It was the best description of hell on earh I can think of. Because you can barely think through it. Having it only once a week is still hell. My relief began with Imitrix injections (in those days). What to say? Maybe "this too will pass"? It did pass, for me, eventually. I wish I could promise that to your too, that it will end someday. Oh, I stilll get migraines, but without the pain (just the other symptons and there's Odansetron for my nausea). I guess, if I were you I'd try natural products. Try to figure out if you are having a reaction to some of your meds or environmental chemicals you are exposed to. But really, that's a big order for someone having moh migraines, because just enduring what you can't stop is already a big job mentally. I do think that another suffers advice to me to take high B Complex so my nerves would have the raw materials to heal and rebuild themselves did me a lot of good. I can't think of another thing to say. So, I'll pray for ya. So sorry you have to go through this. Really.

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Profile picture for Rachel, Volunteer Mentor @rwinney

@importantcargo How very difficult to live with migraine of any kind. I understand some of what you're going through as I have also had chronic daily migraine in addition to other neurological challenges.

I'm curious, how many neurologists have you been to? What treatments have they recommended? Have you tried botox injections or other migraine self injections like Aimovig or Emgality?

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I am still suffering from the effects of Emgality 3 months after taking a double dose. No migraine meds have helped me; only made me dizzzier.
Mikayla

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Profile picture for mikayla @mikaylar

I am still suffering from the effects of Emgality 3 months after taking a double dose. No migraine meds have helped me; only made me dizzzier.
Mikayla

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@mikayla1 Hey, Mikayla - I'm sorry to hear Emgality hasn't helped you, that's very unfortunate because it does help some people. Eventually, none of the migraine meds helped me either. I took me a while to figure out that I had central sensitization syndrome. The fact that you have dizziness from the meds, makes me wonder if you have central sensitization. A few things to consider:

1. Are treatments are no longer working?
2. Is deconditioning setting in?
3. Are you in emotional distress?

I may have discussed CSS with you before, forgive me, I don't recall. Anyhow, I feel awful when folks are suffering and there may be options by thinking outside of the box. Have you considered Mayo Pain Rehab Center? A lot of migraine sufferers find help there.

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Hi
I have joined this group about a month ago, I am not very good at navigating it, I don't always find what I am looking for, or things I had seen before. I am suffering from secondary cough headache, or Primary cough headache just trying to find a Neurologist who understands this type of headache when I cough the pain is excruciating, you want to die it is so bad, I have suffered from Migraines since I am a child and still do, I am in my 80's now. Last year I got some Botox shots to relieve the pain, instead I developed these horrid headaches, I have these every day, when I don't cough they are bearable, but when I cough it is pure hell. so now I suffer from both Migraine and the "Secondary cough headaches" if anyone has had experience with this problem please let me know. I have been to 5 Neurologists so far none have a solution for me. I live in Montreal Canada. I hope someone will know about this condition, I had never heard of it until I got it.
Icart

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Profile picture for Rachel, Volunteer Mentor @rwinney

@mikayla1 Hey, Mikayla - I'm sorry to hear Emgality hasn't helped you, that's very unfortunate because it does help some people. Eventually, none of the migraine meds helped me either. I took me a while to figure out that I had central sensitization syndrome. The fact that you have dizziness from the meds, makes me wonder if you have central sensitization. A few things to consider:

1. Are treatments are no longer working?
2. Is deconditioning setting in?
3. Are you in emotional distress?

I may have discussed CSS with you before, forgive me, I don't recall. Anyhow, I feel awful when folks are suffering and there may be options by thinking outside of the box. Have you considered Mayo Pain Rehab Center? A lot of migraine sufferers find help there.

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None of the treatments ever worked. I treat at Jefferson Headache Center in Philadelphia. I just had my 5th blood patch. Getting another one soon for a diagnosis. Might be blood leaking into my veins in my spine. A doctor from Johns Hopkins has done 3 of my blood patches at Jefferson. He is going back to Johns Hopkins soon so I have to move on this. I am absolutely miserable for 3 years every single day. Thanks for the tips. I'll check it out.

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Profile picture for mikayla @mikaylar

None of the treatments ever worked. I treat at Jefferson Headache Center in Philadelphia. I just had my 5th blood patch. Getting another one soon for a diagnosis. Might be blood leaking into my veins in my spine. A doctor from Johns Hopkins has done 3 of my blood patches at Jefferson. He is going back to Johns Hopkins soon so I have to move on this. I am absolutely miserable for 3 years every single day. Thanks for the tips. I'll check it out.

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Good to hear that you're actively pursuing diagnosis with reputable facilities. I remember what it's like to live in that world of uncertainty. Keep persevering, you'll get there, hopefully sooner than later with a plan for relief.

If time keeps ticking and you don't get firm answers, keep PRC in mind.

I'm curious how your final blood patch will turn out. My fingers are crossed. Do you mind keeping me posted?

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Profile picture for Rachel, Volunteer Mentor @rwinney

Good to hear that you're actively pursuing diagnosis with reputable facilities. I remember what it's like to live in that world of uncertainty. Keep persevering, you'll get there, hopefully sooner than later with a plan for relief.

If time keeps ticking and you don't get firm answers, keep PRC in mind.

I'm curious how your final blood patch will turn out. My fingers are crossed. Do you mind keeping me posted?

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What is PRC? I started this journey 6 years ago and there is nothing left for me to try except the blood patches. There is a Danish doctor at Cedar Sinai who sews up the holes if they are, in fact there. I could never make that trip. My friend tried Mayo in Florida with no luck. I don't think they know how to help us. I have migraine with aura but New Daily Persistent Headache is what keeps me on the couch every day. Now my toes are getting numb from this sedentary life. It all sucks. Yes, I will keep you posted. Thanks for caring.

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Profile picture for icart @icart

Hi
I have joined this group about a month ago, I am not very good at navigating it, I don't always find what I am looking for, or things I had seen before. I am suffering from secondary cough headache, or Primary cough headache just trying to find a Neurologist who understands this type of headache when I cough the pain is excruciating, you want to die it is so bad, I have suffered from Migraines since I am a child and still do, I am in my 80's now. Last year I got some Botox shots to relieve the pain, instead I developed these horrid headaches, I have these every day, when I don't cough they are bearable, but when I cough it is pure hell. so now I suffer from both Migraine and the "Secondary cough headaches" if anyone has had experience with this problem please let me know. I have been to 5 Neurologists so far none have a solution for me. I live in Montreal Canada. I hope someone will know about this condition, I had never heard of it until I got it.
Icart

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I never heard of this, Icart. Have you tried a Headache Center in Canada? You need to get to a place that just treats headaches.
Mikayla

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Profile picture for mikayla @mikaylar

What is PRC? I started this journey 6 years ago and there is nothing left for me to try except the blood patches. There is a Danish doctor at Cedar Sinai who sews up the holes if they are, in fact there. I could never make that trip. My friend tried Mayo in Florida with no luck. I don't think they know how to help us. I have migraine with aura but New Daily Persistent Headache is what keeps me on the couch every day. Now my toes are getting numb from this sedentary life. It all sucks. Yes, I will keep you posted. Thanks for caring.

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Mikayla,
PRC =
Pain Rehabilitation Center
(I sent you a link about the Mayo Clinic program)

You've been on a very long journey. Without even realizing it, the journey takes a toll that helps keep you on the couch. So many factors go into chronic pain from an emotional, physical and behavioral aspect and there's a whole lot to rehab, not just make my headaches go away.

What did your friend go to Mayo Jacksonville for?

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Profile picture for Rachel, Volunteer Mentor @rwinney

Mikayla,
PRC =
Pain Rehabilitation Center
(I sent you a link about the Mayo Clinic program)

You've been on a very long journey. Without even realizing it, the journey takes a toll that helps keep you on the couch. So many factors go into chronic pain from an emotional, physical and behavioral aspect and there's a whole lot to rehab, not just make my headaches go away.

What did your friend go to Mayo Jacksonville for?

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Headache, TMJ, Lymes and other things. I can't get to a Mayo Clinic.

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