Hello all!!  I can't tell you how much it helps knowing that other people can understand the hell that is SOM.  The people in my life are supportive but how can they really understand.  So happy that this group exists!

 

 

When my SOM symptoms began: Symptoms started approximately 10 years ago and lasted for 6 months.  I had off and on symptoms, day or two at a time up until October 2007.  Symptoms came on strong and have been with me every day since.  Some days are better than others - today is a medium.
 
When diagnosed:  October 2007.  Went to hospital when it first started - was treated horribly and was informed that the symptoms I described were physiologically impossible and that it must be psychological.  Went to  Opthamologist and was very fortunate that he was able to diagnose right away as he could see it happening.  I was referred to a neurologist and was sent for an MRI of the brain to rule out any other neurological disorders- all good.  Then referred to a neuro-opthamologist.  I eventually agreed to start taking medication as life had become unbearable due to SOM.
 
Type of doctor: Currently being treated by a neuro-opthamologist - being seen tomorrow (June 10, 2008).  I have lots of questions.

 
SOM eye - Right or Left: Right eye
 
My symptoms: Pulse type sensations, pain behind the eye, shaky double vision
 
Symptom triggers, if any: Changing line of vision, stress, not enough sleep, lying face down for an hour for back massage, flying on an airplane (I have flown 3 times since SOM started up again and strongly suspect that my symptoms are worsened by it.  I think it may involve my sinuses.  I am missing the large group of sinus cavities that are just above and between the eyes.  An x-ray showed that I only have one small cavity.  Very curious if this is a coomon factor with anyone else.  Please let me know. Thanks.
 
Wear glasses? What type/kind: I wear glasses for distance while driving
 
Is SOM eye weaker or stronger than "good" eye?: Not really sure
 
Treatments for SOM: Prescription meds: Yes or No: Yes
Med name, dosage, how long, results 1.  Gabapentin (Neurontin), 300mg - 2x/day, 3 months, not happy with results - feel very tired and drugged and not getting any relief from SOM.  Not sure if the neurontin would have such negative side effects on their own but I am also taking a number of other medications such as oxycontin to help with pain from back surgery.  Plan to ask doc tomorrow about trying something else.
Med name, dosage, how long, results 2. 
Med name, dosage, how long, results 3. 
Med name, dosage, how long, results 4.
 
Herbs. Legal only. List all: 
Herbs. How much, how long, results: 
Herbs. Where obtained:

Hi, Kerbear,

 

This sounds eerily like my story in so many places.  SOM, the back thing, the medication thing, etc. etc.

 

I do think--personal opinion only--that oxycontin after my back surgeries made me feel very much out of it.  In retropect, some of it was even a little humorous, though it did not feel the least bit funny at the time.  However, I could reduce those doses as healing progressed and the pain wasn't as bad. Eventually went to something that I could regulate bit more easily--more on bad back days--less on good ones.  That helped and continues to help.

 

My experiences with Neurontin, (prescribed once for the eye and twice for the back) however, were perfectly horrid.  Each time, I had worse side effects.  I did beg off ever having it again--just could not function because my brain was mush and I couldn't concentrate long enough to dial a phone number.  It didn't work, anyway.

 

I am very glad you found us.  It is so helpful to know that there is a big group out there who knows how it is--really knows.  It feels as if for the first time, someone really GETS it.  We are all standing around you, wonking and shouting, "Yes, I see!"  (Sorry.)    Welcome.

 

Annie

Welcome!

 

Very interesting comment regarding the air travel. The effect of air travel and sinus cavities and SOM does make sense.

 

I do air travel, about 1-3 times per year, but I've never looked for that. I've only been diagnosed since Dec 07, and previously just ignored all my symptoms because every time I'd mentioned them to a medical person they would scare me into thinking that I had MS or a brain tumor. So denial of the entire condition was a better choice, or so it seemed.

 

I'll be traveling this coming up week and will be sure to see if anything changes. The last time I had a really bad episode, I did travel around that time, so I suppose there could be a connection. Thanks for bringing this up as another avenue to explore for triggers!

 

This is also very interesting, because I've applied for some jobs on the Slope and would have to air commute every two weeks the 600 some odd miles. If air travel is indeed a trigger, that will be a major problem!

 

Diane

Dear Annie and Diane,

 

Thank you for the support and the responses.  Diane, I hope that air travel is not a trigger for you and that it won't hold you back for any job prospects.

 

So, I went to the neuro-opthamologist yesterday. I am no longer going to be taking the Gabapentin (Neurontin) and will be starting Tegretol tomorrow.  Any comments on Tegretol??

 

Thanks again,

 

Kerry

Hi Kerbear,

 

I’ve been out of town and wasn’t able to welcome you.  As for Tegretol I, took it for about six months when I was first diagnosed in 1997.  It did not stop the episodes and the side effects were awful.  I was in a constant state of being semi-comatose, which I hated.  Now that’s just how it affected me.  Others may have had a better experience with it. 

 

Everyone reacts differently to medications.  That’s the thing with SOM, different people have different triggers and do great on meds that some don’t do well on.  It’s just a matter of trial and error.  Which is why it’s so frustrating.

 

But I’m glad you found our little group.  There a wealth of information here.

 

Hi again, KerBear,

 

Hmmmm.  Am just about to embark (next week) on a vacation involving plenty of air travel, so I must see if that pulsing feeling  I sometimes have post surgery gets stronger up in the silver bird.  Usually, it's not much of a nuisance--actually minute compared to SOM, but let's see what happens.

 

I also have damaged sinuses--bad tooth extraction and big big infections--and the SOM began after that.  So, I am suspicious!

 

I will just say "ditto" to Cindy's experiences with Tegretol.  No help, extra pounds, slushy brains.  (Not as vegetative as with Neurontin, though.)  BUT it does help some folks, and maybe you will add to that statistic!

 

Annie

Melanie, I am reposting again for you.  When you reply from your e-mails you expose other members e-mail addresses.  If you need help in posting, just write to me and I will be glad to help you.

 

Reply

Recommend  Message 6 of 7 in Discussion

From: <NOBR>Melanie119</NOBR> Sent: 6/12/2008 4:12 AM Hi Kerry,   I started on tegretol to begin with they worked with no side affects well apart from feeling slightly sleepy but I cant put that just down to the tablets. The SOM came back, they put me on neurotin which was no help as well as many others since then. They have started me back on tegretol so see if it would work again, as if I even got a few months relief I would be so happy. I am on1200mg a day, and they have referred me for botox which I am waiting on news on. I also am getting an mri scan done at the end of this month after over 4 years of waiting.   Mel DELETED BY JUDS TO PROTECT A MEMBER'S E-MAIL ADDRESS wrote: New Message on Superior oblique myokymia Welcome kerbear75! Reply   Reply to Sender   Recommend Message 5 in Discussion From: kerbear75 Dear Annie and Diane,   Thank you for the support and the responses.  Diane, I hope that air travel is not a trigger for you and that it won't hold you back for any job prospects.   So, I went to the neuro-opthamologist yesterday. I am no longer going to be taking the Gabapentin (Neurontin) and will be starting Tegretol tomorrow.  Any comments on Tegretol??   Thanks again,   Kerry View other groups in this category. Sent from Yahoo! Mail. A Smarter Email.

Just got back from air travels last night. Happy to report that the air travel is not affecting my SOM!

Diane, that is great news.  It might seem like small comfort to an outsider, you know, those non-twitchers , but it is a truly wonderful thing to be able to eliminate even one thing as a possible trigger for your symptoms.