[Brandelina]

Hello All!

I'm new here. I joined because I'm hoping people who have maybe gone through what I am can maybe give me some insight.

Earlier this year I started getting numbness in my feet and hands, dizziness, fatigue, and a feeling like my eyes would move back and forth rapidly for a few seconds for no reason a few times a day.

I went to a neurologist who saw the numbness and fatigue, didn't go any further, blamed it on my medication for my migraines and sent me away.

My symptoms continued for a few months and subsided. Recently they have all come back with the numbness occurring more often and for longer periods plus I have ringing in my ears every so often that also happens with a few seconds of hearing loss.

I decided to make an appointment with a different neurologist. He didn't dismiss me right away necessarily but told me that I need to see an ENT for the ringing in my ears. He did nerve conduction/emg on me because of the numbness but everything came back negative. He said that means there's no nerve damage and that my body is saying something is wrong with these signs but they really aren't that severe so he doesn't want to do any other tests. He says to just let him know if my symptoms get worse.

It's frustrating and uncomfortable to live with this feeling in my feet and hands most of the day and feel my eyes doing these crazy movements while working. Or not know if or when I might get dizzy and feel I'm going to lose my balance. Or even just being tired from a trip to the grocery store and wanting to nap.

Has anyone else had symptoms like these or trouble getting tests done to get a diagnosis?! Any feedback is appreciated!!

[caroline2]

Hi and welcome. I'm one of the older ones here I believe and for the last 25 yrs+ I've chosen to work with alternative/complimentary "medicine". I've had some negative side effects with pharma drugs and that was my beginning to work more holistic. My daughter who is 52 went thru a mess with pharma drugs and living with horrible side effects including sudden hearing loss. She had a cochlear implant as she had to hear her small children. She believed in a doctor and left with life changing issues.

A friend ended up with a lot of neuropathy and the doctors told her idiopathic and she finally realised 30 yrs of statins.

I know some medications are needed and do save lives but they also do damage. I would look at your medications and side effects. Do you take a medication for migraines only. I've had some ringing in ears in the last couple yrs but it's quieted down a lot lately. I believe the B6 has helped there and I try to keep meds to a minimum.

My most favorite supplement is grape seed extract and I've been taking it 20 yrs and have posted a lot about it here. Just my thoughts. C

[Brandelina]

I have been on a preventive medication for 6 years now for my chronic migraines without any issues. These symptoms have all started appearing within the past 6 months so I don't think it's the medication. My doctor believes something is wrong but just doesn't want to do further tests until it becomes more severe.

[EnglishDave]

Originally Posted by Brandelina

I have been on a preventive medication for 6 years now for my chronic migraines without any issues. These symptoms have all started appearing within the past 6 months so I don't think it's the medication. My doctor believes something is wrong but just doesn't want to do further tests until it becomes more severe.

Hi Brandelina, and Welcome,

Sorry you are going through so many issues with all of this on top of migraines. That being said, what medications do you take and what does your Dr suspect is wrong?

Dave.

[Brandelina]

I am on Topamax for migraine prevention. I have been on it for about 6 years now. I know that has a side effect of tingling which I got for the first month or two after starting it but haven't had it since. Also, these feelings are different than the tingling I had when starting the med years ago.

My doctor hasn't told me what he actually suspects my problem is. He did nerve conduction/emg on all 4 extremities and said everything is completely normal there. He then said something is wrong because my body is clearly telling me it is but he doesn't feel I need to go through scans or anything unless my symptoms become more severe.

[caroline2]

Just one link on alternatives for migraines, there are many links on support for migraines.

http://www.mayoclinic.org/diseases-c...e/con-20026358

[EnglishDave]

I also take Topiramate - heavy doses for control of Cluster Headaches - so I know the side effects well, that after so many years you really should not be getting new ones. However, your eye problems come up as a reportable side effect. Have there been changes as small as the Manufacturer of the ones you take across the period you experience the eye movements?

It sounds to me as though you have multiple issues materialising and the 'wait and see' attitude of your Dr is baffling. Surely early treatment from early diagnosis brings best results.

The only thing I can suggest you do - under Medical Supervision - is reduce and stop the Topiramate for a while to prove that it is not the cause.

I assume you have had all the bloodwork for the usual suspects, like b12 deficiency.

Dave.

[Brandelina]

I know the manufacturer has remained the same for at least the past 4 years. I moved to a new town 4 years ago and the pharmacy here fills my prescriptions with bottles that are pre counted and sealed for the Topamax so I can tell they have been the same manufacturer. They aren't the usual orange pharmacy bottles that could be any manufacturer each fill.

I just had all my blood tests done last week and B12 was fine. I asked a few times just to be certain.

The attitude of my doctor is what really upsets me about all of this. He even blew off my eye symptom saying when you look at things quickly your eyes have to adjust and it's not a big deal. I'm frustrated by feeling like I'm being shrugged off when I can't read without my eyes moving all about plus having my feet and hands being numb most the day.

[EnglishDave]

Ok, I am not a Doctor and cannot diagnose, but your numbness symptoms sound like some form of Neuropathy. Whether this is the case will be determined by progression and your Drs over time, but for now you can receive support, understanding and possibly more answers from our Peripheral Neuropathy Forum:

http://neurotalk.psychcentral.com/forum20.html

Make sure you check out the Stickies at the top of the Pages for excellent information and advice.

Dave.

[Mari]

It could be the topamx.

I was on a medication for tens years with no problems before I started getting the werid side effects from it. I had to stop it.

If you want to talk to an expert about Topamax, talk to a pharmacist or call the drug manufacturer.
The drug manufacturer will mean that you spend some time on the phone, but you might feel better about things


M