New and need some feed back, please.

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New and need some feed back, please.

Postby precious » Wed Jun 06, 2007 6:18 pm

I was dx in Feb w/ SM the Mri had only showed the bottom of the syrinx so I had to wait 7 weeks get in to a NL and I had to do 4 more MRI's and 2 Ct scans to help rule out chiari. I had My follow up on Monday and my syrinx is from my t6 - t12. I have severe headachaces and the NL put me on a antiseisure??? medication topamax. He does not know if it will help or not, does anyone have experiance with this? I also have a herniated disc at my t6 and a bulging disc at L5 but I cant get anyone to see me for the disc problems because of the syrinx but then no one knows what to do for the syrinx. My NL is contacting the University of Utah to see who there can help me, and in the mean time i have chronic pain and headaches that are never ending. My PCP gave me ultram 25 a 2 month's ago I was supposed to take 2 pills 4x's a day and they did nothing for the pain? Any suggestions I am going to a new PCP on friday. Any thoughts appreciated. I am so glad that i have found this site i have been looking and reading here for weeks now and I believe that i have found what has been heaven sent to me.
Thank you
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Postby mac » Wed Jun 06, 2007 8:40 pm

Precious, just a note to say welcome to the site, I'm glad you found your way here, too! I'm sorry you are in such pain and none of the medications are helping. I, too, am considering Topamax, so will also be interested in others feedback. Let us know how the appt. goes on Friday, okay?

Yer friend mac

Postby heaven » Wed Jun 06, 2007 11:59 pm

Hi, I took the Topomax. Didn't work for me so, after 6 mos, I changed to the mac of Lyrica

Postby daynthelife » Thu Jun 07, 2007 12:11 am

I've been taking topamax successfully for about a's the only thing that has helped my headaches. So far I have only been dx with SM...I started out with 25mg and ramped up until I got to a dose that helped. I was at 75mg for a bit then had to go up to 100mg when the headaches returned. That was a few months ago and so far so good. I still have break through headaches from time to time but nothing like the headaches I had before the topamax. Not everyone has success with topamax though. If you experience any eye pain or blurry vision stop taking it and contact your Dr. A couple of our members experienced these rare side effects first hand and they should not be taken lightly. I hope this has helped.

much luv,

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Postby mac » Thu Jun 07, 2007 12:52 am

Thanks, Kathy...

Postby mac » Thu Jun 07, 2007 5:10 am

Keesha, you don't have any problem stopping cold turkey for a few days (the Topamax) then?

thanks for all that info and I am sure precious finds it helpful too



Postby hoz74 » Thu Jun 07, 2007 7:46 am

I am on 100 mg of topamax a day and at first I did a lot of complaining about the side effects, but they wore off after about a month or so and I have not had a migraine in about two months which is a huge plus for me and I have also lost about 8 pounds which is a huge plus for me too. Make sure you read your leaflet that comes with the medicine because it has a lot of side effects and drink lots of water because it can cause kidney stones for some people too. You have to weigh the risks and the benefits. The benefits out weighed the risks for me. Hope this helped some
ACM decompression surgery sept 06
Lord Keep your arm around my shoulders
and your hand over my mouth
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Postby kiminfla » Thu Jun 07, 2007 8:43 am

Hi Precious, I'm one who had serious problems with topamax. I had topamax induced angle closure glaucoma both eyes -- I lost my vision for four days and was told I could have lost it permanently. (The lens angles were closing and if they get to zero they can't be re-opened -- that's the way my opthamologist explained it to me). I had been on the minimum dose for 9 days when this happened. Don't want to scare you as topamax works for many! Just wanted to say that in addition to contacting your NL or whoever prescribed it, if you have that side effect I would advise that you need to get to an opthamologist immediately. He was able to reduce the pressure in my eyes and after 4 days my vision returned. Be blessed, Kim
CM - PFD 9/7/06
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Postby unicorns » Thu Jun 07, 2007 9:33 am

Don't know about Topomax - but with regard to Ultram - I was taking it before I had the first killer headache which was the first symptom I had - and I found out later than Ultram can actually raise your spinal fluid pressure (mine was elevated) - so it probably made my headache worse. It's too bad because it actually was helping with my arthritis pain. So anyway, I don't recommend Ultram at all!
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Postby precious » Thu Jun 07, 2007 6:23 pm

Thank you for all of your feed back i appreciate it so much and also unicorn thank you for the info on ultram that really makes me nervouse hearing that it can raise my spinal fluid. Do you know how they monitor that? i am so knew at this a just have no idea how any of this works?
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Postby petsmom » Thu Jun 07, 2007 11:27 pm


We were all new here at one time and seeking info and support. It can be very overwhelming and a lot of info to digest and make sense of.

It is very important to keep in mind that SM affects everyone a little different and not eveyone will have the extent of problems as others. All of us attempt to enlighten others based on personal experience, knowledge gleaned from experienced medical persons.

Please try to keep a postive perspective. Take note of things you read that seem important but don't get "caught up" and give into fears of the unknown variety! Stress is not compatible with SM, messes with BP and can agravate symptoms. I remember when first joined here and was reading all the postings and my mind was going into overtime worrying and fretting about this strange, uncommon diagnosis.

I had to kick back and put things back in perspective. It is true for most anyone that stressing and being overly anxious/fearful about having a medical problem can make things seem worse or actually heighten pain. Stress causes tension in the mind and body. Most of us with SM have a lot of muscle tension in back muscles and that is very painful. Spasticity is common symptom and a proper muscle relaxer can be as important as the pain med. Need to be taking both to really help. That is for most of us, not all. Tension is neck area can cause headaches for most anyone and we just have to be more careful about taking a deep breath and chilling out!

Hope your doctor visit is a good one and you have a bit more knowledge to work with the doctor to at least keep you comfortable and safe while waiting to see a specialist. That is where I am at now as far as doctor care goes. No straining, don;t get talked into physical therapy or anything like that. Do not agravate mid body. I can no longer sweep, mop, vaccum, yardwork, etc. Anything that puts strain on those mid body nerves and muscles. Might try ice pack off/on to see if helps you. Heat bothers some of us, not all.

And many of us are on antidepressants which are used to help with the pain message in the spine/brain as well as the depression that chronic pain can cause. There is a real correlation. Some docs do not explain that when they tell a patient they need to take antidepressant meds. Does not mean they think you are "crazy". Just a FYI.

I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
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Postby mac » Fri Jun 08, 2007 12:22 am

Great info there, Dawn. I just wanted to thank you for it. That last part about antidepressants is great too. When I think of all I went thru when I did not understand what you explained...that they'd say I needed an antidepressant and I indeed thought they thought I was brain damaged and/or crazy. What you wrote there, we all need to remind everyone of this from time to time, esp newer folks just starting on this journey. I wish I'd known about it back then...


Postby precious » Fri Jun 08, 2007 7:38 pm

Thank you so much Dawn for that info. Just as Mac said the way that you explained it made it easier to understand than just "well, here you sound a little depressed let's put you on these! Maybe we can make you less crazy."
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