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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi chell1999.....

Migraines making someone feel weak doesn't sound right...I've never heard that said before.I have migraines and weaknes was never a symptom with them..other things yes,but not woth the migraines.

Were you put on the topamax before or after the burning started?

Did they rule out Chiari Malformation on your brain MRI?Often this is missed...did you get a copy of yoyur MRI report and or the actual MRI fims/discs?If not you should request copies for future reference.

I sympathize with you...it's hard to be not feeling well when you have a job to go to and little children that need your love and attention...so sorry you are having to go through these health issues.

Did your MD do any blood labs on you?That would be a necessary thing due to your being so weak and dizzy.You could be anemic and/or B12 deficient or just low on vitamins.(I happen to be B12 deficient).

If you haven't had labs done I would absolutely request to have them.

Do you have pain going on anywhere else..like in your shins,sides,hips,feet,hands,back?Sorry for all the ???sJust trying to see if anything else is being affected.

Weakness and burning pain could be related to some kind of neuropathy.How do you feel if you don't take the topamax?

My friend Cindy here has a lot of knowledge about several health issues...maybe she can be of some help too.I'll send her a post

Try not to worry...take care~Scout
Hi Chell~

I'm so sorry you are having to deal with all this and trying to keep it all together. Its hard enough to get through let alone with small children to raise.

I have been dealing with similiar symptoms and I tell myself how lucky I am that my symptoms didn't become real bad until my kids were older and can take care of themselves. I still do have a teenager to get through but thankfully she's very independant.

I have chiari malformation and get the burning pain as well. The back of the head and face burning your describing, as well as the unbarable fatigue, I am very familiar with. I now get all that burning in my whole body as my symptoms progressed. Sometimes it is like a novacaine feeling but when its severe, its like a rug burn. Scout gave you some wonderful advice and this burning could be as she said, neuropathy.

neuropathy is not fun. I am on differant meds to try to manage the pain but nothing seems to help to much. I take neurontin for the nerve pain. I have heard about topomax being used. Does that seem to help any?

As far as light housework making things worse, you just have to try to take things slow. I do my housework in small increments. And if its too much and I know I can't handle it, it doesn't get done. Right now, focus on whats important and at the top of the list. Save your energy for the important stuff, which is caring for the kids. Until you get a grip on things, ask for help with the housework. Rest whenever you can.

I definately wouldn't except the migraine diognosis. It seams like there may be something going on in a neurological nature. You really have to stand up for your own health and if your feeling like theres something really wrong, don't give up till you get some answers.

Here below, are some symptoms of Chiari because it could be a possibility. Of course there are many other neurological diseases that could be causing these symptoms. MS and Lyme disease are other things that come to mind.

I know its difficult when your struggling with health issues but we have a great little support group here. And if we can help in any way, just shout out;)

Hang in there

Cindy

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double vision

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more
[QUOTE=scout316;3770014]Hi chell1999.....

Migraines making someone feel weak doesn't sound right...I've never heard that said before.I have migraines and weaknes was never a symptom with them..other things yes,but not woth the migraines.

Were you put on the topamax before or after the burning started?

Did they rule out Chiari Malformation on your brain MRI?Often this is missed...did you get a copy of yoyur MRI report and or the actual MRI fims/discs?If not you should request copies for future reference.

I sympathize with you...it's hard to be not feeling well when you have a job to go to and little children that need your love and attention...so sorry you are having to go through these health issues.

Did your MD do any blood labs on you?That would be a necessary thing due to your being so weak and dizzy.You could be anemic and/or B12 deficient or just low on vitamins.(I happen to be B12 deficient).

If you haven't had labs done I would absolutely request to have them.

Do you have pain going on anywhere else..like in your shins,sides,hips,feet,hands,back?Sorry for all the ???sJust trying to see if anything else is being affected.

Weakness and burning pain could be related to some kind of neuropathy.How do you feel if you don't take the topamax?

My friend Cindy here has a lot of knowledge about several health issues...maybe she can be of some help too.I'll send her a post

Try not to worry...take care~Scout[/QUOte


Hi scout

The burning was going on before I started the Topamax. I haven't ever had blood work done. I do have alot of weakness in my arms and hands and pain in my neck. I have a hard time holding onto small objects for long periods of time. (like my cell phone or a steering wheel) I am suppose to start physical therapy on my neck soon. I am not sure why. My neuro said he thinks I have a pinched nerve. I disagree. I haven't ever heard of this Chiari Malformation before. I think I will do some research on it. Thank you for your quick responses. I really don't think don't think a migraine would start in April and last through October. I am hurting more and more every day I am thankful for this message board and everyone on it.
[QUOTE=cindys601;3770413]Hi Chell~

I'm so sorry you are having to deal with all this and trying to keep it all together. Its hard enough to get through let alone with small children to raise.

I have been dealing with similiar symptoms and I tell myself how lucky I am that my symptoms didn't become real bad until my kids were older and can take care of themselves. I still do have a teenager to get through but thankfully she's very independant.

I have chiari malformation and get the burning pain as well. The back of the head and face burning your describing, as well as the unbarable fatigue, I am very familiar with. I now get all that burning in my whole body as my symptoms progressed. Sometimes it is like a novacaine feeling but when its severe, its like a rug burn. Scout gave you some wonderful advice and this burning could be as she said, neuropathy.

neuropathy is not fun. I am on differant meds to try to manage the pain but nothing seems to help to much. I take neurontin for the nerve pain. I have heard about topomax being used. Does that seem to help any?

As far as light housework making things worse, you just have to try to take things slow. I do my housework in small increments. And if its too much and I know I can't handle it, it doesn't get done. Right now, focus on whats important and at the top of the list. Save your energy for the important stuff, which is caring for the kids. Until you get a grip on things, ask for help with the housework. Rest whenever you can.

I definately wouldn't except the migraine diognosis. It seams like there may be something going on in a neurological nature. You really have to stand up for your own health and if your feeling like theres something really wrong, don't give up till you get some answers.

Here below, are some symptoms of Chiari because it could be a possibility. Of course there are many other neurological diseases that could be causing these symptoms. MS and Lyme disease are other things that come to mind.

I know its difficult when your struggling with health issues but we have a great little support group here. And if we can help in any way, just shout out;)

Hang in there

Cindy

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double vision

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more[/QUOTE]


Wow,, I just had to call my husband in here to read this because I felt like you just completely described me. My head burns and it was numb last night. I do have that rug burn feeling sometimes. My skin is flushed alot. I thought I was about to go crazy. My next step is to mention this to my neuro. How do I go about doing that without him thinking I am crazy. We have alot in common. How long did you have symptoms before you were diagnosed?





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