Please Help...I know nothing...

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rhondab
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Date Joined Mar 2006
Total Posts : 2146
   Posted 9/20/2007 1:36 PM (GMT -7)   
Hey Guys
 
I'm over from the MS board and need to get a little direction. I feel a bit lost now and not sure what to believe is going on. I"m not dx'd with ms...in limbo..so many questions to many symptoms and although they all CAN point to ms, individually they can be unrelated and something entirely different. That said, i've had HORRIBLE eye pain in one eye for over a year now. It waxes and wanes in it's appearances, but when it's here it's absolutely unbearable. My neuro could not dx ms, so we're down to treating the symptoms seperately. He felt if i didn't have Optic Neuritis (a common ailment in ms) then i must be suffering from occular migraines. I began having this pain AFTER my initial ms type symptoms. Those symptoms were later assigned to basilar migraines...migraines with aura, but without pain. So ok, i have migraines and now i need help. I have no knowledge of what meds are good and what aren't. I now take maxalt when the eye pain starts. I started taking just one as needed like that, but now i take up to three per episode. I'd like very much NOT to have that pain start. I tried topamax and that didn't seem to help. I continued to get the pain. I also would like to take something that DOESN"T make acidic foods/drinks taste sour or salty as topamax does. Does anyone have any suggestions for me???
 
Also, can u tell me if this fits? When i get this pain i either get it in my eye or above or behind it. Hard to pinpoint. Also, my vision is really really blurry. There are times when i get that blurriness without any pain. Many times when this pain sets in i'm made sick. I will end up in bed vomitting and in total pain for a full day! This is taking a lot from my family. I really have to get this under control. Any input u guys could give me would be great! Thanks so much for u'r time.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 9/20/2007 11:51 PM (GMT -7)   
Hey Rhonda,

So sorry to hear you are suffering so much! First of all you need to see a Neuro who is a Headache Specialist, as the ordinary Neuros do not understand headache in the same way, nor do they have enough knowledge sometimes - I am a perfect example of that cos I saw 3 different Neuros and none of them could diagnose what was happening to me till I saw a Headache Specialist!!!!

Secondly, with the triptans great care is needed, only 2 doses of triptan can be taken in any 24 hour period. The reason for this is the action on the heart, it is only safe for the heart to take 2 doses in any 24 hour period!

If the triptans work for you, how about asking your Doc to try Oxygen - no I have not gone mad lol!!! Oxygen is breathed in at 7-15 litres per minute with a non-rebreather mask (mask with no holes) so you get 100% O2. Oxygen is usually prescribed for Clusterheadache but I know it does help some migraineurs!! The action of oxygen in the head is to reduce the size of the blood vessels just the same as the triptans do - the difference is that O2 only acts on the head where the triptans squeeze the blood vessels all over the body, thus the action on the heart! Food for thought anyway!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/21/2007 3:50 PM (GMT -7)   
Hey Ann

Wow...thanks for the info!! I"m set to see my neuro on Tues, but did consider seeing a headache/pain specialist. Is there a diff between the two (yes i can imagine there is)? I didn't realize more than two maxalt was not ok!! Geesh...i'll stop that!! I do notice it makes me really really sleepy and sluggish, not to mention weirding me out a bit with some muscle soreness/achiness and other seemingly non emergency type symptoms. I will go ahead with my neuro appt on Tues because i also need to address other neurological issues there, but do intend to find a headache spec. immediately. I can see how that could be very beneficial. I"ll ask on Tues about the O2 as well. Thanks!!!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 9/22/2007 12:25 AM (GMT -7)   
Hi Rhonda,

Hope all goes well on Tuesday will be thinking of you. My GP and local Neuros diagnosed me with Chronic Migraine, in fact one Neuro said all I had to do was cut out eating yoghurt lol!!!

When I finally saw a Neuro who is a Headache Specialist in London he diagnosed me with 'Hemicrania Continua' for which there is very specific treatment which is working wonders for me now!!!

Up until then nothing really worked for me for very long, or did not take the pain away completely!! This has taken 20 years to get this far and I wouldn't wish that on anyone else!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

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