[corgichic]

Hello. I am new to all this (recently diagnosed w/ rsd) Was wondering how many rsd patients here suffer with migraines as well and what are you taking for relief? My md is now putting me on Topomax 50mgs a day.

Thanks

Julie

[ali12]

Hi there,
Welcome to Neurotalk. My name is Alison, I am 12 years old and I suffer from RSD in my left leg however I used to have it in my right arm but it is now fully recovered - thanks god.
I suffer from headaches/migraines, I think that the pain and medication causes them. Speak to your doctor about them though - he/she might be able to give you something to get rid of them.
Take care
Love
Alison
PS: If you need anything I am here

[Abbie]

I have migraines... never had them before RSD...

I take Frova.... seems to work well... and fast.



Abbie

[InHisHands]

Hi there and welcome

These threads of mine might be of interest to you, as they are on the topic of migraines:
http://neurotalk.psychcentral.com/sh...ad.php?t=17664
http://neurotalk.psychcentral.com/sh...ad.php?t=19689

Hope it helps!

[Kyzyl363]

Hi there. Sorry to hear about your struggle. I also suffer from migranes which started right around the time I was diagnosed with RSD. I never thought anything of them until I was getting one almost every day for 5 days in a row. When I started on gabapentin (neurontin) they went away. I find I have been getting them more often again but I can't tell if it is from neck tension or that I have more widespread RSD, quite potentially now in my neck, face and head. I am taking 800mg-1200mg a shot of advil (IBProphen) at the earliest sign of an onset. Once when I was at the hospital the doctor told me that if I was going to take anything for serious pain to take more than the standard on the box but not to overdo it through out the day. So I take what I said above and it usually keeps it at bay. If it doesn't go away I know it is likely to do back tension.
That's my spin on things. Good luck! TTL J

[andreagibson]

See if you can try Celebrex instead of topamax. Look at the side effects of topamax before you try it. Our family has had two adverse effects with topamax. My daughter, Ashton, was really getting bad migraines and her Dr. put her on celebrex and they have basically gone away. Good luck.

Andrea Gibson - Mom of Ashton

[brookeyleigh333]

Originally Posted by ali12

Hi there,
Welcome to Neurotalk. My name is Alison, I am 12 years old and I suffer from RSD in my left leg however I used to have it in my right arm but it is now fully recovered - thanks god.
I suffer from headaches/migraines, I think that the pain and medication causes them. Speak to your doctor about them though - he/she might be able to give you something to get rid of them.
Take care
Love
Alison
PS: If you need anything I am here

hi alison
i am brooke i am 10 years old and 2 months ago was my sports day my left knee gave way and after that my knee was hurting and i was getting pains like throbbing and striky pains so went to the hospital and i got told i had ripped ligaments so i got put on cruches and had a knee brace put on my knee,a week after that me knee started shaking and kicking out and i could not controll it,it was really getting me down and it carried on for ages a week later (2 weeks after my sports day)i went back to the hospital again and the whole hospital was gob smacked no one new what it was. i had an egc scan and a x ray on my chest also 3 blood tests and nothing showed up i was then put on diarcipan and stayed the night at the hospital.the next day i went home and was referd to great ormand street for the following week. the week i went to great ormand street i got told i had rsd and was then referd back to my local hospital for physio. my 1st time at physio i was told i had swelling around my knee. i do not have all the symtoms of rsd like i do not get burning pains but most of the rest.the shaking is still going on now it is now nearly 2 months and i also have 2 new symptoms cramping and passing out.in this past week i have been going really hot like a heat wave has hit me and then my head starts hurting i feel sick after that i pass out is any of the things i have match you please let me no and also please let me no if the things that happen matches what happens with you.how are you now?how long has it been?
thankyou brooke

[loretta]

Hi Brooke,
I am so very sorry you have RSD, especially at such a young age. I'm 61 and have had it 14 years-full body now. RSD is an autonomic disorder-which means it affects organs that are involuntary, like the heart, lungs, blood circulation, blood pressure, the sympathetic nervous system causes high blood pressure and the para sympathetic nervous system causes low blood pressure. I have passed out-pressure was60/40 I have a kit and keep track of my pressure almost dailey. When you wash your hair, don't keep your head down for too long. When bending down, be careful of not letting your head drop too long. Our body temperature is not regulated correctly. Thus we sweat a lot or we get ice cold. I get migraines also. He get excessively hot or cold because our sympathetic nervous system controls body temperature and it's out of control. We are never to use ice on our body. Outside temperature changes affect us-put us in a flare. Most of us feel good with epson salt bath, heating pad. My Dr. told me not to be out in the sun-use sun screen. Getting a sun burn would not be good for us.
Please write about anything or ask anything. You can do this on the forum or do a Private Message on the left hand side- it says PM message. Please know we are all here for you and encourage you to READ READ READ. Your Mom and Dad too. This is a very difficult thing to deal with-there is no cure, but remission is possible. I've had two remissions.
I was started seeing a psychiatrist 5 years ago and see him once a month. He has kept me mobile-out of a wheel chair, got me on the right meds and amounts. He also is a neurologist and pharmacologist. I'm grateful to have him. Sometimes it's difficult to find a knowledgeable Dr. Take care, loretta

[spiritscript]

Sorry, I posted in wrong place.

[loretta]

Originally Posted by brookeyleigh333

hi alison
i am brooke i am 10 years old and 2 months ago was my sports day my left knee gave way and after that my knee was hurting and i was getting pains like throbbing and striky pains so went to the hospital and i got told i had ripped ligaments so i got put on cruches and had a knee brace put on my knee,a week after that me knee started shaking and kicking out and i could not controll it,it was really getting me down and it carried on for ages a week later (2 weeks after my sports day)i went back to the hospital again and the whole hospital was gob smacked no one new what it was. i had an egc scan and a x ray on my chest also 3 blood tests and nothing showed up i was then put on diarcipan and stayed the night at the hospital.the next day i went home and was referd to great ormand street for the following week. the week i went to great ormand street i got told i had rsd and was then referd back to my local hospital for physio. my 1st time at physio i was told i had swelling around my knee. i do not have all the symtoms of rsd like i do not get burning pains but most of the rest.the shaking is still going on now it is now nearly 2 months and i also have 2 new symptoms cramping and passing out.in this past week i have been going really hot like a heat wave has hit me and then my head starts hurting i feel sick after that i pass out is any of the things i have match you please let me no and also please let me no if the things that happen matches what happens with you.how are you now?how long has it been?
thankyou brooke

Hi Brooke and welcome to neurotalk
I am so very sorry you are having RSD symptoms. I got RSD 14 years ago following surgery, but wasn't diagnosed for 4 years. I got frozen shoulder after the surgery and they sent me right into physical therapy thank goodness. It took a 100 treatments, but got full range of motion back. went into remission, then it moved to other shoulder-more therapy,remission. While I was having physical therapy, I did an hour of massage therapy on my own. The physical therapy was painful, so given pain med prior to therapy. About a year or so after my 2nd frozen shoulder I went into remission again. At least a year later, I was water skiing and felt a pull in my left hand. RSD used to be called Shoulder Hand Syndrome. My hand became paralyzed, flat as a board. Was misdiagnosed as having rheumatoid arthritis, even tho the texts were negative. Went to orthopedic sports injury group a couple states away and saw the hand Dr. He walked in the room and in less than a minute said RSD-Sent me to the hospital for a nuclear med test- That's like an x-ray with dye-it showed the bone degeneration-proof of RSD. Got started with physical therapy next day. Came back to Arizona =saw neurologist more tests-positive for RSD Saw a orthopedic hand specialist, confirmed, and started physical therapy and Desensitization-very very important.
It's funny after 100 physical therapy treatments and 100 massage treatments and had full range of motion back, we were moving to Arizona, my therapist said before we left, don't be surprised if it goes into the other shoulder. I thought that sounded so strange. After at least a year of remission, that's what happened- other shoulder.
RSD is an autonomic disorder, meaning it involves the involuntary internal organs. Our body temperature,(we sweat a lot) or can get ice cold. Our blood pressure can go high (sympathetic nervous system) or go LOW-the para sympathetic nervous system. --passing out. I've passed out once from low blood pressure 60/40 We have memory problems, forget words while we are speaking, anxiety/panic attacks , electric shocks, jerks, spasms are common. The Limbic part of our brain is involved-depression, decision making process is involved,
It's important to listen to your body, keep moving, swimming, water therapy is easier on the body. Temp should be 86 degrees. Streatching
is important, meditation, prayer, journaling, listening to music. walking, candles, epson salt bathes. It's important to try and stay in a calm frame of mind. Some people feel an anti-anxiety med is just as important as a pain med. Anti-depressants work on nerve pain. I take 120 mg of Cymbalta
I take vicodin for pain two blood pressure meds. Seroquel 300mg for sleep. Lorazepam for anti-anxiety.
I would like to encourage you to read as much as possible. Take care, and please keep in touch. It's important to have support. You can go to RSDSA and under Support you can punch that. There is a place you can put your zip code and it will give you the name and phone number of the community support group leader closest to where you live. They are very encouraging and you can learn a lot.
5 years ago when I was diagnosed generalized or full body, my neurologist suggested i see a psychiatrist. I'm glad I did. I still see him once a month. He actually manages my pain. He is a neurologist, pharmacologist and psychiatrist. He has helped me cope with the losses that come with RSD and have a good frame of mind and look for things to be grateful for.
I'm sorry again youo have this at such a young age. My heart goes out to you and your family. Please keep in touch. Your friend, loretta soft hugs