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It's me---- with an update (long)

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willocat	It's me---- with an update (long)	Lead	[-]
Posts: 159 (06/19/08 11:36) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Tags : migraines, seizures Hi everyone, I'm updating... woopee. My second trip on the Topa Express hasn't been as smooth as the first. But it's not Topa's fault. Actually, Topa is probably helping me. I started having some weird things going on before I started Topa again, which was a contributing factor in me deciding I should give it a go again. I was having moments of EXTREME deja vu that lasted off an on ALL day and I would get this strange smoke smell that no one else could smell. Then one day, roughly 3 weeks for starting Topa, I was waiting in my doctors office and I started whiting out. I wasn't nervous or anything. I couldn't even explain why it happened, but for like 45 minutes the nurses had a hard time getting me to stay from not whiting out. My blood pressure kept dropping and then leveling off, my heart would race. I was get pale but never sweat. I just felt dizzy and weak. But I was calm and could talk. I wasn't nervous, just couldn't figure out was going on. Then it passed. Then the same thing happened a week later, but didn't last as long. This time I was really shaky and had a heavy smell of smoke everywhere like my house was on fire. My doctor strapped a holter monitor on me, which only showed two irregular beats (good!). And I thought this will pass then. I had dysautonomia when I was pregnant with my daughter (she'll be 3 in august), so I'm no stranger to passing out. Well, I didn't even think to mention this to my neurologist because it hadn't happened since those two times, and I just went in to my appointment gunho on getting my Topamax back. Then, bam, now I'm having near syncope episodes up to 7-9 times a day. I failed my work renewal physical because of it yesterday and was taken off duty until my neurologist clears me. They've ruled out my heart and everyone is sure it's neurological. They are talking seizures of some kind - both my endocrinologist (who was the first one I was brave enough to mention this to) and my GP is thinking this might be the case seeing as I'm smelling smoke and deja vu. I was shocked when I googled de ja vu and it came up with that - I just thought it was some weird feeling you get. Darn, I'm not psychic after all! lol I wasn't supposed to see my neurologist until July 18th, and I'd been trying desperatly to get in sooner, but to no avail. Even my doctor's office had tried twice. But yesterday, after having to lay me off work (doc said he could conciously place me a situation where I would be caring for children - ok doc you wanna take my two then???), he called my neurologist and spoke to him PERSONALLY. 30 minutes after leaving my GP's office my neuro's office calls and said he'd like to see me the 27th, which is the next day he's in the office. Sweet. Nice kicking butt doc. I don't have much experience with seizures, or what not. My uncle has epilepsy, but he always had the whole Gran Mal seizures that put him on the floor twitching everywhere. I know I don't do that. I don't even lose concious. I do know my face is numb. I keep smelling strange things. I do space out occassionaly (according to my co-workers). I have been waking up ALOT lately choking and with the feeling that I've stopped breathing. It's very unsettling and I can't get back to sleep for a minute, it's like I have to remember to breath and I get really anxious. I've done this in the past, occasionally, but nothing like lately. I've been stressed because of school and the doctor told me any underlining conditions will be hightened because of stress. I'm inclined to think these have something to do with my migraines, at least until the neuro tells me otherwise. All though, I'm not having any headaches until after I have the near syncope and then every episode brings them on. And it's not a migraine headache. Odd, I know. I also have an endcrinologist who is trying to schedule a water deprivation test at a facility that doesn't do water deprivation tests because he says my blood work and tests are coming back suggestive of Diabetes Insipidus. I'm inclined to think my body is just falling apart... not a good thing at 28. And that's my update, folks. Migrainers? Seizers? Any input would be very, very appreciative. I'm so lost right now.
spanielsoftee		#1	[-]
Posts: 2441 (06/19/08 01:39) Moderator Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Good day Willo! That's a lot of stuff going on with you. I don't know how you stayed calm through it all. I've had migraines all my life with bad auras in the early days - even those threw me for a loop. You are an enigma!! I keep hearing reports that migraines and seizures are so closely related - something about the part of the brain that controls these things. Would explain why Topamax and Zonegran (epilepsy meds) are so effective in treating migraines. I sure don't know a thing about the deja vu dx - and the smoke smell is really strange. Kudos to your doc for getting your neuro visit bumped up. Sounds like you really need to get there ASAP. Keep us posted Willo. This is a definite head scratcher. Carol
2ryte		#2	[-]
Posts: 806 (06/19/08 03:18) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Willow...so sorry you've been experiencing such weirdness. What you've described sounds to me, at least, like simple partial seizures...or what is sometimes (well, A LOT of times) an "aura." Carol is ryte...migraines and seizures truly are closely related, that's why Topamax, Zonegran, Trileptal and others are used to treat both "disorders." I was having simple partials for two years, if not longer, before I had the big "grand mal" or tonic-clonic seizure. I just didn't realize it! I would get the epigastric rising feeling (a strange, "ow! Did I just get punched in the stomach?) that would rise to my throat and be followed by nausea. Then I would get either a metallic taste in mouth or a hideous smell would enter my space! I'm talking hideous smell. I WISH I would just smell something burning! ;) That burning smell is very common, though, with people having a simple partial. I'm glad you're seeing a neuro. soon. Be sure to write down every symptom, smell, taste or 'spaciness' experiences to share with the doc. Keep us updated!
willocat		#3	[-]
Posts: 160 (06/19/08 04:24) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Thanks, guys. I'm glad to get your freedback. When I mentioned the smoke thing to my endocrinologist - I hadn't said anything to anyone cause I thought I was imagining this - I insisted that I wasn't going crazy. I was in tears thinking that this guy was going to lock me up and throw away the key. But he said I wasn't, that he had heard of it before. So, whew. It was a relief getting it out there and off my chest. And that metallic taste... I've gotten that. I used to get it all the time on Topamax... but was getting if off an on after going off Topamax. I got it a few days ago. My stomach started hurting, like someone was twisting my bowels, then it went away. Really quick and I had this overwhelming feeling like I had to throw up. I rushed to the bathroom and my husband goes "now you're not fainting, you're throwing up?" But I never threw up, just gabbed. And it passed after a few minutes. But I had a nasty metal taste in my mouth for a while and nothing I ate or drank got rid of it. I just attributed it to being back on my Topamax. Now I wonder if it's connected? Somehow I have a feeling I'm in for a bunch test and I'm gonna be a lab rat... lol
2ryte		#4	[-]
Posts: 807 (06/19/08 08:47) Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	willo, you're not going cwazy. These are very real symptoms of perhaps something going on in your brain...Or.....it could be Topamax side-effects. Lord knows those are varied in all of us. No one will lock you up and throw away the key unless you want them to!! I JUST told my epi. doc that I stopped taking my meds for two and a half weeks just to see what would happen ( I ended up getting a big, honking complex partial seizure) and he was not at all surprised. You may be due for some AEDs. (sorry, Anti-Epileptic Drugs.) Hopefully that won't be the case and perhaps you're experiencing the auras some get (like Carol and others) prior to a migraine. I think certain medications can also cause symptoms that mirror small seizures, or Simple Partials (auras.) Just to let you know...I tried to edit my prior message but YUKU wouldn't let me...just becuz you're having these feelings certainly does NOT mean you will have a "Grand Mal" (tonic-clonic) seizure. I realized after I wrote the first message that it sounded inevitable, as I was experiencing the same things (and more) as you before I did the 'hippy hippy shake' in front of my PCP. And hubster. That's not always the case. Simple partials sometimes lead to complex partial seizures, which involve more areas of the brain--when consciousness is ALTERED, but not always lost (usually NOT lost.) The only time I've lost consciousness while seizing was when I had tonic-clonics and the one complex partial I had in the ER after I split open my head and gave myself a mild concussion! (big dummy!) But lessons learned.... If you ever feel funky, SIT DOWN or lie down until it passes. A SP or Complex Partial usually lasts under 3 minutes. Mine average 2 mins., which is normal...whatever normal is these days! Don't think the worst. Yes, your neuro. will probably (and SHOULD) do an EEG and MRI but both are painless. Just boring. Hang in there, girl!

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