Jaime, how I wish you and I lived closer to one another! You too, Kelly. I am no longer on Facebook, but I am on Instagram. How I treasure you ladies who support me from afar.
Same here Lori! I'm grateful for all of the strong and inspirational people I've met on this journey. And I'm happy to be a source of support for those who need it.
I really feel your pain, I have had migraines for over 12 years, then 5 to 6 years ago the migraines became Chronic and so severe I spend a lot of time in the ER 16 visits last year and 3 times this year already. I go to the Urgentcare when its not severe enough to be throwing up and dehydrated. I have migraines constantly 24/7 some are tolerable enough I can do limited activities.
Hi Kelly. I'm so sorry to hear about your pain struggles. It truly breaks my heart to read what you've gone through. I am also very allergic to triptans. My throat closes up and I have a hard time breathing. Do you have a PFO? I've read that having that closed has helped many with their migraines. I have a list of groups and resources on my blog. I hope you join some of the groups. I'm a member and/or administrator for all of them. I used to take Lyrica for migraines but made depression worse.
Sorry this is so long but my story of pain is similar to yours it is so hard to tolerate and sometimes I pray for God to just take me now. I do pray for a miracle but my mothers brothers and sisters has them 2 dont but the other 5 did. And my grandmother had them as bad as I do. Luckily my mother is one that did not get them. I have a wonderful husband which I owe my life to he is such a caring person he had helped me through all the pain. If it was not for him I dont think I would be here today
I had to go on disability at my job which was really hard for me, I really loved my job but I had to let it go because I was gone more than I was at work. A company I worked for 23 years. Then they laid me off 2 months later. I was really devastated but I had to take care of myself. Unfortunately I am severly allergic to the triptan medication it put me in the hospital for 4 days. They thought I was having congestive heart failure. After a few tests they found out I had Flash Pulmonary Edema.
For the breakthroug migraines. It did work for a while maybe a year or more but after that the came back with a terrible vengeance which put me on SS disability which I have been on for 3 years. Still searching for relief since the ER's and urgentcares will not help me any more. I found a pain specialist that will put a peripheral nerve stimulator on the left side of my head since that is always where the pain is. I had the trial in Nov last year finally and it did work so I have been scheduled
Now I have been told the ER's and the Urgentcares will not help me anymore that is so not fair. Where do I go to get relief? My primary care doctor is the only one that will help me but all he can give me is Toridol, phenergan, and Benedril which helps some but does not take it away. I have seen 4 neurologist and 3 pain specialist. Got no help from the neurologists. My first pain doctor did help me he put me on a fentanyl patch which really worked for a while, he gave me the fentanyl lozenges.
My entire body would shake the worst was the restless leg syndrome it causes during withdrawl. I was so irritated and could not sit still. My skin felt like it was burning off my body I lasted a day then I had to go back on them. I think that is the worst I have ever felt. So here I am still waiting for my surgery. I really dont know what to do but find another doctor that does the surgery. I have checked around but have not found anyone in oklahoma. I might have to go to Dallas, TX.
I think I lost 1 between So I have been scheduled and my entire body shakes. I have been scheduled at least 3 times for the surgery and something always happens, my insurance, he had a family emergency so he has been gone almost a month. I keep trying to call the person that schedules the surgery and she wont call me back. I tried to go off my fentanyl patch of 100mcg with my doctors help. I made it to 50mcg then the withdrawl was so severe I could not take the pain.
I would not wish this on my worst enemy, its so hard to tolerate. Lately they have discovered a heart murmur and one of the valves in my heart does not close so blood leaks back into the chamber it should not be in. Then a month or so after my trial I have been having small seizures I had an EEG and the left side of my head was abnormal causing them to fire more than they should so im off to a neurologist. Thats my story sorry if it is too long but believe me I know exact how you feel.
Could you give me some of the support groups you belong too? Its would nice to talk to someone that has been through the pain. I hope it will be more comforting to me to know im not alone in this battle. I will be praying for you :)
Jaime, how I wish you and I lived closer to one another! You too, Kelly. I am no longer on Facebook, but I am on Instagram. How I treasure you ladies who support me from afar.
Same here Lori! I'm grateful for all of the strong and inspirational people I've met on this journey. And I'm happy to be a source of support for those who need it.
I really feel your pain, I have had migraines for over 12 years, then 5 to 6 years ago the migraines became Chronic and so severe I spend a lot of time in the ER 16 visits last year and 3 times this year already. I go to the Urgentcare when its not severe enough to be throwing up and dehydrated. I have migraines constantly 24/7 some are tolerable enough I can do limited activities.
Hi Kelly. I'm so sorry to hear about your pain struggles. It truly breaks my heart to read what you've gone through. I am also very allergic to triptans. My throat closes up and I have a hard time breathing. Do you have a PFO? I've read that having that closed has helped many with their migraines. I have a list of groups and resources on my blog. I hope you join some of the groups. I'm a member and/or administrator for all of them. I used to take Lyrica for migraines but made depression worse.
I just friend requested you on Facebook. I think you are in my migraine groups . We have 26 friends in common. Your videos really touched my heart.
Same here nobody cares or understand this evil illness unless thier going thru it
Sorry this is so long but my story of pain is similar to yours it is so hard to tolerate and sometimes I pray for God to just take me now. I do pray for a miracle but my mothers brothers and sisters has them 2 dont but the other 5 did. And my grandmother had them as bad as I do. Luckily my mother is one that did not get them. I have a wonderful husband which I owe my life to he is such a caring person he had helped me through all the pain. If it was not for him I dont think I would be here today
I had to go on disability at my job which was really hard for me, I really loved my job but I had to let it go because I was gone more than I was at work. A company I worked for 23 years. Then they laid me off 2 months later. I was really devastated but I had to take care of myself. Unfortunately I am severly allergic to the triptan medication it put me in the hospital for 4 days. They thought I was having congestive heart failure. After a few tests they found out I had Flash Pulmonary Edema.
For the breakthroug migraines. It did work for a while maybe a year or more but after that the came back with a terrible vengeance which put me on SS disability which I have been on for 3 years. Still searching for relief since the ER's and urgentcares will not help me any more. I found a pain specialist that will put a peripheral nerve stimulator on the left side of my head since that is always where the pain is. I had the trial in Nov last year finally and it did work so I have been scheduled
Do you take Lyrica for your fibramilaga
Now I have been told the ER's and the Urgentcares will not help me anymore that is so not fair. Where do I go to get relief? My primary care doctor is the only one that will help me but all he can give me is Toridol, phenergan, and Benedril which helps some but does not take it away. I have seen 4 neurologist and 3 pain specialist. Got no help from the neurologists. My first pain doctor did help me he put me on a fentanyl patch which really worked for a while, he gave me the fentanyl lozenges.
My entire body would shake the worst was the restless leg syndrome it causes during withdrawl. I was so irritated and could not sit still. My skin felt like it was burning off my body I lasted a day then I had to go back on them. I think that is the worst I have ever felt. So here I am still waiting for my surgery. I really dont know what to do but find another doctor that does the surgery. I have checked around but have not found anyone in oklahoma. I might have to go to Dallas, TX.
I think I lost 1 between So I have been scheduled and my entire body shakes. I have been scheduled at least 3 times for the surgery and something always happens, my insurance, he had a family emergency so he has been gone almost a month. I keep trying to call the person that schedules the surgery and she wont call me back. I tried to go off my fentanyl patch of 100mcg with my doctors help. I made it to 50mcg then the withdrawl was so severe I could not take the pain.
I would not wish this on my worst enemy, its so hard to tolerate. Lately they have discovered a heart murmur and one of the valves in my heart does not close so blood leaks back into the chamber it should not be in. Then a month or so after my trial I have been having small seizures I had an EEG and the left side of my head was abnormal causing them to fire more than they should so im off to a neurologist. Thats my story sorry if it is too long but believe me I know exact how you feel.
Could you give me some of the support groups you belong too? Its would nice to talk to someone that has been through the pain. I hope it will be more comforting to me to know im not alone in this battle.
I will be praying for you :)
Oops spelled it wrong: fibromyalgia