Migraines

Ceary

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TW for anyone with medical issues with migraines and body paralysis.

I have migraines going back to when I was 14 (2004 - which is when my rediscovery of diapers started) and it's genetic. I have issues with body paralysis and aphasia (inability to speak) when my migraines are hemiplegic (paralysing similar to symptoms of a stroke but not). It's been happening to me since 2017 that I get complex migraines. I was recently hospitalized where I came to the ER twice after having a migraine with paralysis (hours can be short or long for paralysis) any time I'd go home and rest.

My blood pressure drops low and my heart rate as well. I can't function at that point. I have a ton of medical issues and I've already seen specialists.

My issue is my pride and my almost peeing myself tons of times (also as a lady with menstruation leaks). I don't know if it's something I can do to make myself feel more at ease in life. But I'm going through a lot. I recently had to have help getting to the hospital paralyzed from my migraine and it wore off within several hours.

I have to have help getting to the bathroom when I'm paralyzed. Once I'm up and moving I can go on my own, but today I had to ask for assistance from my boyfriend's brother who was a care taker for his loved one before so he was fine with it. I just emotionally am exhausted and physically exhausted worrying about leaking or even being able to go to the bathroom when I'm stuck in paralysis. I can't prevent the migraines and even if the migraines aren't an issue, I have issues getting up half the time because of my neurological dysfunction. Once I'm moving I'm fine... But I can't stand all day or move around all day.

Does anyone have any suggestions or similar experiences? I'm drained crying every day.
 
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Not a solution, but pull-ups could provide some reduction from the concern of not making it to the bathroom. I know that is likely a huge step, but it may help from a comfort standpoint and a feeling of having some protection if you are unable to may it.

I am to the understanding that there has been a few new drugs or expansion of use for other existing drugs that may help reduce the onset of migraines, like botox (I am very leery of botox as I believe it is over used and not fully understood).

My heart goes out to you as I can at least understand your fear of being out of control when a migraine takes control.
 
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Ceary said:
TW for anyone with medical issues with migraines and body paralysis.

I have migraines going back to when I was 14 (2004 - which is when my rediscovery of diapers started) and it's genetic. I have issues with body paralysis and aphasia (inability to speak) when my migraines are hemiplegic (paralysing similar to symptoms of a stroke but not). It's been happening to me since 2017 that I get complex migraines. I was recently hospitalized where I came to the ER twice after having a migraine with paralysis (hours can be short or long for paralysis) any time I'd go home and rest.

My blood pressure drops low and my heart rate as well. I can't function at that point. I have a ton of medical issues and I've already seen specialists.

My issue is my pride and my almost peeing myself tons of times (also as a lady with menstruation leaks). I don't know if it's something I can do to make myself feel more at ease in life. But I'm going through a lot. I recently had to have help getting to the hospital paralyzed from my migraine and it wore off within several hours.

I have to have help getting to the bathroom when I'm paralyzed. Once I'm up and moving I can go on my own, but today I had to ask for assistance from my boyfriend's brother who was a care taker for his loved one before so he was fine with it. I just emotionally am exhausted and physically exhausted worrying about leaking or even being able to go to the bathroom when I'm stuck in paralysis. I can't prevent the migraines and even if the migraines aren't an issue, I have issues getting up half the time because of my neurological dysfunction. Once I'm moving I'm fine... But I can't stand all day or move around all day.

Does anyone have any suggestions or similar experiences? I'm drained crying every day.
I have had deep depression and migraines for nearly my entire life. More recently, I developed MS symptoms and was diagnosed with the disease about 10 years ago. Maybe I can help to a degree?
 
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Ellyn said:
I have had deep depression and migraines for nearly my entire life. More recently, I developed MS symptoms and was diagnosed with the disease about 10 years ago. Maybe I can help to a degree?
I would like to connect. I know my boyfriend's brother's his wife had MS and I fear if the likelihood of my issues being that but I'm a few years too young for that range of it to be. I'm exhausted and just out of words to express the pain and endurance I've had to have to go through this. I appreciate you.
 
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Edgewater said:
Not a solution, but pull-ups could provide some reduction from the concern of not making it to the bathroom. I know that is likely a huge step, but it may help from a comfort standpoint and a feeling of having some protection if you are unable to may it.

I am to the understanding that there has been a few new drugs or expansion of use for other existing drugs that may help reduce the onset of migraines, like botox (I am very leery of botox as I believe it is over used and not fully understood).

My heart goes out to you as I can at least understand your fear of being out of control when a migraine takes control.
Thank you. I have samples of brief diapers I got and I ran out of pull ups, but I need to find a way to get funds for them. I'm exhausted of worrying about my bladder hurting and waking me up when I can't get up out of bed. For prevention of migraines, I was on some before but nothing worked or side effects, but I need to see a neurologist (ER Drs can't prescribe certain ones) to get introduced to others available. Soon.
 
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I’m more than happy to help in any way I can. My first thought is to take a breath and try to relax. Take time to count your blessings. After that attempt to quantify the issues, what you can affect and what you can’t without medical help. Things like bathroom issues and fear of leakage are easy to deal with, yet the underlying causes need to be assessed at some point. Again, menstrual leakage issues are easily dealt with.
It sounds to me like you have a few very serious medical issues that need to be diagnosed and treated. They are very likely affecting many other symptoms that you’re experiencing. . If possible, try to get medical attention while suffering the symptoms so that a diagnosis can more readily be obtained. Follow the treatment path until you get past you life threatening issues.
I will pray for your quick diagnosis, treatment, and rapid recovery.
 
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Ellyn said:
I’m more than happy to help in any way I can. My first thought is to take a breath and try to relax. Take time to count your blessings. After that attempt to quantify the issues, what you can affect and what you can’t without medical help. Things like bathroom issues and fear of leakage are easy to deal with, yet the underlying causes need to be assessed at some point. Again, menstrual leakage issues are easily dealt with.
It sounds to me like you have a few very serious medical issues that need to be diagnosed and treated. They are very likely affecting many other symptoms that you’re experiencing. . If possible, try to get medical attention while suffering the symptoms so that a diagnosis can more readily be obtained. Follow the treatment path until you get past you life threatening issues.
I will pray for your quick diagnosis, treatment, and rapid recovery.
I have been diagnosed but treatment is limited especially within needing funding that's beyond normal paying jobs can afford. I have 3 major diagnosis without a cure. I am an entrepreneur so I will find a way to afford quality of life, but it's just challenging. I've had to drop treatment plans due to ineffective medications (they stop working) or Drs don't know how else to help as it's out of their league. For now I'm just trying to find ways to reassess my home life to aids of protection and assistance if needed. Maybe work from home vs working out and about. Etc.
 
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Ceary said:
I have been diagnosed but treatment is limited especially within needing funding that's beyond normal paying jobs can afford. I have 3 major diagnosis without a cure. I am an entrepreneur so I will find a way to afford quality of life, but it's just challenging. I've had to drop treatment plans due to ineffective medications (they stop working) or Drs don't know how else to help as it's out of their league. For now I'm just trying to find ways to reassess my home life to aids of protection and assistance if needed. Maybe work from home vs working out and about. Etc.
Let us know how we can help. Collectively, we here have a treasure trove of information.
 
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Ellyn said:
Let us know how we can help. Collectively, we here have a treasure trove of information.
Thank you
 
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Ceary said:
I have been diagnosed but treatment is limited especially within needing funding that's beyond normal paying jobs can afford. I have 3 major diagnosis without a cure. I am an entrepreneur so I will find a way to afford quality of life, but it's just challenging. I've had to drop treatment plans due to ineffective medications (they stop working) or Drs don't know how else to help as it's out of their league. For now I'm just trying to find ways to reassess my home life to aids of protection and assistance if needed. Maybe work from home vs working out and about. Etc.
I am no authority on Migraines but I do get very strong headaches from time to time and they put me in bed for awhile. Something my old mum said once was to try Vicks Vapo Rub on your temples and above your nose between the eyebrows. As my headaches are caused by nerve damage from a neck accident I also put it behind my ears and down the muscles to my shoulders. Old wives tale that the Canphor and eucalyptus oils treat the pain and it seems to work for me sometimes but like I said I have only ever had one or two migraines in my life and this lessened the pain but I do use it all the time for any other head aches. Hope this helps even a little bit.
 
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Angelapinks said:
I am no authority on Migraines but I do get very strong headaches from time to time and they put me in bed for awhile. Something my old mum said once was to try Vicks Vapo Rub on your temples and above your nose between the eyebrows. As my headaches are caused by nerve damage from a neck accident I also put it behind my ears and down the muscles to my shoulders. Old wives tale that the Canphor and eucalyptus oils treat the pain and it seems to work for me sometimes but like I said I have only ever had one or two migraines in my life and this lessened the pain but I do use it all the time for any other head aches. Hope this helps even a little bit.
I appreciate the reply. I'll definitely take into my notes these items. Sometimes even lessening the pain can help
 
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Ceary said:
I appreciate the reply. I'll definitely take into my notes these items. Sometimes even lessening the pain can help
I mainly suffer from lower back pain from an injury many years ago. I found a Pain Specialist in a big city hospital that uses an acupuncture type of treatment in that uses needles to pinpoint the pain then uses radio frequency down the needles to burn the nerves. I have had it done on my back 8 times approx. one year apart and it is like Christmas to be pain free almost right away. He has said if my neck pain gets worse he can treat that also and he is very good and follows up after a week or two to make sure everything is OK. In Canada this is covered under our health care plan. Not sure if they can treat headaches but I will ask when I see him in a months time.
 
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Angelapinks said:
I mainly suffer from lower back pain from an injury many years ago. I found a Pain Specialist in a big city hospital that uses an acupuncture type of treatment in that uses needles to pinpoint the pain then uses radio frequency down the needles to burn the nerves. I have had it done on my back 8 times approx. one year apart and it is like Christmas to be pain free almost right away. He has said if my neck pain gets worse he can treat that also and he is very good and follows up after a week or two to make sure everything is OK. In Canada this is covered under our health care plan. Not sure if they can treat headaches but I will ask when I see him in a months time.
Regarding the term 'burn,' I am guessing you mean stimulate?
Only saying that as that was the term I had heard.
 
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My mom had frequent migraines with occasional aphasia. Low dose Elavil controlled them. (Well, until the resident on call took her off elavil without asking or telling anyone. Oops.)

My wife has something neuro (never really diagnosed, but suspected to be migraine related) that left her with periodic numbness on one side of her whole body, stroke-like symptoms that took us to the ER over and over. Lyrica keeps them at bay.

Good luck!
 
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Angelapinks said:
I mainly suffer from lower back pain from an injury many years ago. I found a Pain Specialist in a big city hospital that uses an acupuncture type of treatment in that uses needles to pinpoint the pain then uses radio frequency down the needles to burn the nerves. I have had it done on my back 8 times approx. one year apart and it is like Christmas to be pain free almost right away. He has said if my neck pain gets worse he can treat that also and he is very good and follows up after a week or two to make sure everything is OK. In Canada this is covered under our health care plan. Not sure if they can treat headaches but I will ask when I see him in a months time.
I'm curious to hear back.
 
MudPuppy said:
My mom had frequent migraines with occasional aphasia. Low dose Elavil controlled them. (Well, until the resident on call took her off elavil without asking or telling anyone. Oops.)

My wife has something neuro (never really diagnosed, but suspected to be migraine related) that left her with periodic numbness on one side of her whole body, stroke-like symptoms that took us to the ER over and over. Lyrica keeps them at bay.

Good luck!
I'm on gabapentin now but it doesn't stop the migraine paralysis and aphasia just the pain
 
Edgewater said:
Regarding the term 'burn,' I am guessing you mean stimulate?
Only saying that as that was the term I had heard.
The doctor used the term burn the nerve dead and as there is quite a bit of pain when it happens I am inclined to believe him. All I know is about an hour after the local anasthetc wears off, I can walk around for an hour and not get tired or have any pain. It usually lasts for the better part of a year but so far this year I have postponed my appointment twice as the pain has not gotten bad enough to need it. The first time I had it done I was good for more than two years and I was still working then. Even this winter after shoveling snow, I am still in pretty good shape although my arthritis in my hands and feet is giving me problems.
 
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Angelapinks said:
The doctor used the term burn the nerve dead and as there is quite a bit of pain when it happens I am inclined to believe him. All I know is about an hour after the local anasthetc wears off, I can walk around for an hour and not get tired or have any pain. It usually lasts for the better part of a year but so far this year I have postponed my appointment twice as the pain has not gotten bad enough to need it. The first time I had it done I was good for more than two years and I was still working then. Even this winter after shoveling snow, I am still in pretty good shape although my arthritis in my hands and feet is giving me problems.
That is amazing!! Burning nerve endings dead seems counterintuitive, but it is clearly working for you!
Ya, this last winter has continued to push all the joints. Heavy snow is a pain.
 
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Edgewater said:
That is amazing!! Burning nerve endings dead seems counterintuitive, but it is clearly working for you!
Ya, this last winter has continued to push all the joints. Heavy snow is a pain.
Only two major storms in my area this year and my neighbours did most of the work so I am not too bad but I did clear off the back deck and I think I sprained my arm muscles or it might just be my Arthritis acting up again. I hear what you say about burning the nerves but my lower back joints are pretty much shot so there is no real solution and even operating is not a given solution. I have two friends who went that route and both are in wheelchairs now. It did not fix their problems but seemed to make things worse.
 
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Have you investigated other neurology solutions? Academic medical centers (Hopkins, Mayo, Duke, etc) are great resources for unusual conditions.
 
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