I have not been diagnosed with Chiari, but...

[Serpthia]

I have a 6.5 herniation. Mine is rounded instead of peglike, so I have not been given the diagnosis. Over the last few years I have developed a lot of strange symptoms. Many of the things I am experiencing have been expressed by the posters on this site; a stiff neck, ringing in the ears, migraines, a strange sensation in the back of my head and neck, mental confusion, fullness in the ears, difficulty with word recall. visual disturbances, a spacey feeling, and just a general sense of malaise.

I do have a symptom that I have not read about here, hyperacusis. That symptom has developed over the last year and with increasing frequency. For me that is the one that is most difficult to tolerate.

I do not have what might be considered one of the classic symptoms, if there is such a thing. I do not get a headache when I cough or sneeze. I have not found the trigger(s) for my migraines. I also get silent migraines.

I feel like a walking mess, but I have things to be grateful for too.

Thank you for reading.

All my best,
Serp.

[selmaS]

  I am only on 12.5 mg...smallest dose ....I did not have hair loss, I did lose some weight in the beginning, but gained it back...so it really does not always work the way many report on all of us....The worst part was just the first 2 weeks, then it all cleared...I still have some days I get confused with some things, but that is me and my chiari,....

Well Like I said the heavy fog and cognitive issues can also be due in part from chiari......we r all diff, so it is something u have to see  or decide for urself....for post op issues, it is working for me.....

[Serpthia]

Selma,

How much Topamax are you taking? Have you had any hair or weight loss? Is the cognition stuff as bad as I read? I know it is individualized, but cognition problems seem almost universal for those taking it. I have to remind myself those that take it and do not experience side effects really have no reason to articulate it. The imbalance of information can really skew the reader's perception(s). I will admit the drug scares me. A lot of times I already feel like I'm attempting to think through a heavy fog.


Thanks...

[selmaS]

  I am also on topamax and the first 2 weeks were the worst until ur body adjusts....I really felt it was not the right med for me bcuz of how it made me feel, but it did all clear up....and one time I ran out of is and what a difference.

I must also say I was post op when I started on this med....

And chiari does have a way of making ne med seem like a dopamax...really, many of our cognitive issues can be attributed to chiari....

  Many times with chiari we have symptoms far longer then we realize, since we have had some many symptoms since birth as well as the condition the way we feel is "normal" and we may not perceive it as a symptom....something to consider....

[Serpthia]

Selma, thank you for the welcome.

My last MRI was one month ago. It was ordered by my ENT for asymmetrical hearing loss. I guess that is unusual for the type of hearing loss I have.

I have actually known about my herniation for several years, but it was not problematic. It might not be now, but I think it should be up for consideration.

My neurologist has not seen the results of my MRI yet. I will make sure he does. Thank you for suggesting CINE Flow MRI. I will be sure to ask for it.

I am getting prepared to start Topamax. I am not looking forward to it. I do not need anything to hinder my thinking further. The fact some call it Dopamax is not encouraging.

And, thanks for relaying your experiences with hyperacusis. To know of someone that commiserates because of experience is helpful.

[selmaS]

   Hi  and welcome to the Chiari forum.

Have ne of ur Drs checked ur CSF flow? or for a syrinx, or tethered cord?

There r related issues u should be checked for. Since chiari is either congenital or acquired, it is good to know which urs is......

I have seen others with symptoms regardless of the shape of the tonsils, this is y the CINE Flow MRI is so important.

As for headaches with sneezing and coughing, it is more like a lightening bolt of instant pain when u do these, I never thought of it as a HA when I had them b4 I was told by Drs that what it was, but my way of describing it is not a HA, I may get one depending on how badly my Head hurts afterward.

I was also sensitive to sounds, and did not like to be in areas where I felt it was loud...post op at 3 yrs later it is not as bad, but I still do not like loud things and certain sounds....but I was not dx'd with hyperacusis. Many with Chiari do have light and sound sensitivities,.

When was ur last MRI done?