Don't know wat is going on!!!!

[Cricket]

Two weeks ago I was hospitalized for four days for a migraine, it was so bad I did not sleep, eat or drink for three days, then they figured  it out and gave me some imitrex for it and it went away pretty good.  Came home with a mild headache, they put me on topamax, one in the am and one in the pm for one week then double it for one week then call the neuro.  I don't know if I am in a flare or what, I am sleeping til noon even though I set the alarm.  My body is killing me from my fibromyalgia.  Oh, I forgot to mention the docs think I am depressed cause I lost my parents, one on 12-21-08 and one on 5-23-09. So they also have me on lexapro.  I just want to crawl in a hole a stay there!!!!

Cricket

[~elizabeth~]

Sorry to hear that, that headache sounds unbearable. Sorry about your parents, it must have been awful losing both so close together.

I found this board/got diagnosed as a result of having a really big flare recently. I'm sure it's connected to losing my father in August, after 3 months of hospitalisation and the knowledge he could decline suddenly all of that time. I think stress of this magnitude is bound to take a terrible toll on anyone with AI problems, and the after effects can take a few months to show up. A friend of ours finally got diagnosed with Lupus, after having a huge flare within a few months of losing her husband. What I don't know is how long it lasts, or how permanent the damage is 

Doctors are a pain. I made the mistake of telling one GP about my father. "Oh, your bound to be really run down then, that's probably all it is". I think that's why they refused to help at all over the SjS, they had made up their minds it was all just anxiety-related.

[dkpowell]

While I am sure you are depressed over losing your parents - who wouldn't be? I know I was terribly depressed when I lost my parents pretty close together - that doesn't mean that depression is the cause for your symptoms! I wish Dr's would get off that excuse!
Is fatigue a side effect of the Topomax? That could be causing you some problems, although that much stress could put anyone into a flare. Try to take it as easy as you can and give yourself some time to get back on your feet. It is hard to want to face life when you are hurting and don't have any answers.
Just know that others are thinking of you, and we understand what you are going through!
Debora

[Patze]

Oh Cricket, I'm so sorry to hear about your latest bout with SJS, when it rains, it pours sometimes.  I'm glad that they got the migraine under some kind of control, boy, I know what you mean about the pain, even though mine aren't nearly as bad as yours.

With all the stress you've been under with your folks, and then the migraine, I don't know how you're holding it together so well.  Wow, you're amazing!

I'm sorry I can't speak of Topomax, but by chance, has your rheumy or neuro ever mentioned maybe trying Lyrica?  I know that it helps take the edge off of my migraines (and helps with the fibro too) so they're not nearly as bad as before.  It makes me a bit tired, but I can work through that (low dosage during the day, and higher at night).

Hang in there, and keep us updated, okay?

Take care -

Patze

[Joe S.]

I am sorry to hear about your parents but I do not believe that is the cause of your depression or your migraine or your flair. Pain is often the cause of depression and when the pain goes away so does the depression.

For your migraine you can try the breathing exercise that works for mine. Breathe in and think "hot hands" or "hot feet", breathe out and think "cool head".

What this does is reorients your blood flow to your hands and feet putting an end to the migraine and the tension in your neck and shoulders.

For most pain flairs I use similar breathing exercise. Breathe in "I am", breath out "calm" both exercises take practice but will work very well in time.

[~elizabeth~]

Stress and depression aren't the same things. Stress can have a huge physiological impact on the body; being seriously adrenalized for long periods of time can put your endocrine system out of sync (thyroid, female hormones etc), and I'm sure this is one process underlying stress-related flares. That isn't at all the same as having a 'somatic' disorder, or whatever your doctors may be suggesting by linking it with depression.

[EllenS]

Hi Cricket - nice to "meet" you. 

Have you looked carefully at Topamax?  There are a ton of side effects.  What you describe isn't out of the norm for a lot of people.

Please notice, that Topiramate/Topamax lists kidney stones as a side-effect.  I'm still learning a lot about Sjogren's, so if I'm wrong I hope somebody will speak up. I have suffered kidney stones for 24 years now.  Oops- 25 now that it's November.  Anyway, apparently Sjogren's can cause kidneys to form stones.  I'd be really concerned that renal issues might be made much, much worse with the Topamax, as it can create a metabolic acidosis that is similar to what I'm reading Sjogren's causes in the kidneys (maybe the reason I've been forming stones all these years?).  If that's true, I'm afraid that adding the topiramate might be something you want to really be careful with.  Migraines are right up there with natural childbirth, but kidney stones - well, they're much, much worse. 

My experience with Topiramate was good and bad.  It's a real miracle for a lot of people.  It helped with my serious Migraine issues, but also very quickly gave me staghorn kidney stones.  Yes, they are as awful as they sound.  Worse actually.  My urologist was fit to be tied I was ever given this med, since I was already a stone former.  This was back when kidney stones were listed as a 'rare' side effect.  We now that kidney stones are fairly frequent with topiramate - according to my urologist anyway.  They are much, much worse if you drink soda or have an acidic diet. 

Has your doctor talked to you about this side effect?  Have you considered getting a CT of your kidneys to keep an eye on them in case you begin forming stones?  At least if you find one, you can go in for lithotripsy before you have to go thru the agony of shaking one loose on your own.   

So sorry you've got Migraines with all this.  That's actually one reason I came here - hoping to find others with similar symptoms.  My Migraines are pretty serious, even resembling strokes, and tho they got better when we found and treated vitamin deficiencies due to malabsorption, I am still living day to day, disabled by them. 

Hang in there... You're not alone. 

~Ellen S

[tomsmom]

Wow Cricket,
I'm so sorry about the loss of your parents.  Why are doctors so quick to jump to depression as a diagnosis when it looks like they're going to have to work a little bit to find out what's wrong with someone?  I hope you're finding some relief with the Topamax.

Ellen S.,  What you said about the Topamax is scary.  My 1 yr old is on the medicine for seizures and he has kidney issues.  The doctor said to give him plenty of water, now I know why.  He's tube fed so I can only get so much water into him.  The little room he has in his belly is usually filled with his frequent formula feedings.  And I can't replace them with water.  I would so hate for him to get kidney stones from that medicine.  I'll be calling his neuro to talk to her soon.  Thanks for the info!

[Cricket]

Thanks everyone for the replies and good suggestions.  I went off the topamax as I was getting sicker by the day, the last day on the medicine I could only urinate a tablespoon at a time.  Thant is when I said I want off of this stuff, each day I felt much better.  Feeling back to my normal, which I still hurt from the fibromyalgia but oh so much better .
Thanks again
Cricket