Something Really Scary Has Happened

[Looking for answers]

Thanks for keeping us posted. I keep checking back to see how you are doing. We're all thinking about you!

[masterjen]

I'm "willing" the phone to ring with the results (should come in today or tomorrow). The anxiety and nervousness waiting for the celiac test results was nothing compared to this I know "patience is a virtue" (or whatever that saying is), but whoever came up with that was not waiting for test results at the time . . . .

[jerseyangel]

I'm "willing" the phone to ring with the results (should come in today or tomorrow). The anxiety and nervousness waiting for the celiac test results was nothing compared to this I know "patience is a virtue" (or whatever that saying is), but whoever came up with that was not waiting for test results at the time . . . .

(((hug))) I can just imagine how nervous you are right now. Try and take a deep breath. We're all thinking about you

[ravenwoodglass]

I'm "willing" the phone to ring with the results (should come in today or tomorrow). The anxiety and nervousness waiting for the celiac test results was nothing compared to this I know "patience is a virtue" (or whatever that saying is), but whoever came up with that was not waiting for test results at the time . . . .

I hope it rings soon. Since the EEG did produce seizure activity hopefully they will have some answers and be able to help.

[Lynayah]

Masterjen: I have been out of town and just found this thread. I just wanted to add that you are in my prayers and best thoughts. Thank you for posting all you are going through.

I -- all of us -- look forward to hearing every update. Sending love.

[Skylark]

I've been watching too. I'm glad to hear that the CT didn't turn up anything bad. We're all waiting for EEG news with you! Fingers crossed.

[masterjen]

Sorry for being out of touch for awhile. The neuro. put me in the hospital for 2 weeks: what a nightmare - boring as heck, and got gluttened twice on the hospital's so-called gluten free menu (cc, I'm sure), and after the first few days had my mom bring my meals in for me. I was in two different locations in the hospital: in the first, the nurses were very attentive, came as soon as I buzzed when I was having a seizure, described in their notes exactly what occurred, and even sometimes held my hand through the whole thing. When I got moved about a week later to another floor, I buzzed (as I was supposed to, for proper documentation purposes), and sometimes the nurses wouldn't come at all, or came 15 min. later (when it was all over, and asked why I buzzed them), and usually documented nothing except "patient reported that . . ." so nothing was officially witnessed, as was one of the original focusses of the admission). It wasn't like I was buzzing them often - perhaps 1 or 2 times per day, as I was being trialed on meds by that point.

EEGs and MRIs were normal - while I'm glad nothing serious is going on, it is still a mystery as to what has caused them, and the neuro. agrees. I still can't help but wonder about a celiac connection. The seizures are now 90% effectively controlled with medication ( they tried me on a couple while in was in the hospital to see what stabilized me the best and had the least side effects). I was released last Friday, and I see the neuro. again tomorrow to find out the next step. I am still affected by extreme fatigue and incoordination (some of which may be med. related, I guess). Now this going gluten-free stuff is a piece of cake compared to everything else - lol! Thanks for the caring comments and interest. Will keep you posted.

[kareng]

Thanks for the update. Hospitals are horrible places to get well. Sounds like your doc is really working on this. HAving so many seizures can wear you out. Keep us informed. You never know when we might be able to use this info. Sending you good thoughts.

[gabby]

In the midst of trying to figure out what is going on with your health, thank you for taking the time to update us all. I wish you all the best, and hope that you and your doctors get to the bottom of what's going on. Figuring out medication dosage can take a while. If you feel like posting what meds you are taking...maybe others can give you their own experiences with the drug.....and other sorts of things they did to help themselves out.

I just feel awful for what you are going through and wish I had more to offer.

Sending lots of good energy your way!

[bluebonnet]

wow, glad you are outa the hospital and i sure hope they find answers for you that will bring you relief. will continue to pray for ya.

[ravenwoodglass]

Glad to hear your out of the hospital and I hope they get this figured out soon.

[Skylark]

Thanks for the update. That sounds really hard, especially the hospital stay. I'm glad you found some meds that get the seizures under control and I hope you get the rest of the health issues sorted out.

[jerseyangel]

Thanks for letting us know--especially with all you have going on. I continue to hope that they get it all figured out

[masterjen]

In the midst of trying to figure out what is going on with your health, thank you for taking the time to update us all. I wish you all the best, and hope that you and your doctors get to the bottom of what's going on. Figuring out medication dosage can take a while. If you feel like posting what meds you are taking...maybe others can give you their own experiences with the drug.....and other sorts of things they did to help themselves out.

I just feel awful for what you are going through and wish I had more to offer.

Sending lots of good energy your way!

A med. I was initially taking for about 2 weeks was clobazam, which worked minimally to control the seizures. Once in the hospital I was initially given IV dilantin which was then switched to oral, but after 5 days on this I was so out of it: visual disturbance called nystagmus when I looked in a particular direction, very uncoordinated walking (in fact for the 2-3 days I was on IV dilantin I was bedridden and had the joy of using badpans ), and difficulty thinking and memory difficulties (sometimes people came to see and I carried on conversations, but have no memory of the visitors, or if I remember the visitor I can't remember the conversation, and many regular occurrences within the hospital on that drug I don't remember (meals, bed-pan time, sponge-baths, etc). So, needless to say, they took me off that drug after a 5 day attempt to stabilize me on it, and put me on clonazepam, which has worked very well to control the seizures both in and out of the hospital. The only troublesome side-effects with this one are mild-to-moderate fatigue, and only a mild sense of being "out-of-it".

If anyone can add their 2-bits to this based on experience, I'd really appreciate it.

No further answers from the neuro. follow-up visit, which is frustrating, but he isn't giving up on me, he said, and is interested in getting to the bottom of it all.

[mushroom]

A med. I was initially taking for about 2 weeks was clobazam, which worked minimally to control the seizures. Once in the hospital I was initially given IV dilantin which was then switched to oral, but after 5 days on this I was so out of it: visual disturbance called nystagmus when I looked in a particular direction, very uncoordinated walking (in fact for the 2-3 days I was on IV dilantin I was bedridden and had the joy of using badpans ), and difficulty thinking and memory difficulties (sometimes people came to see and I carried on conversations, but have no memory of the visitors, or if I remember the visitor I can't remember the conversation, and many regular occurrences within the hospital on that drug I don't remember (meals, bed-pan time, sponge-baths, etc). So, needless to say, they took me off that drug after a 5 day attempt to stabilize me on it, and put me on clonazepam, which has worked very well to control the seizures both in and out of the hospital. The only troublesome side-effects with this one are mild-to-moderate fatigue, and only a mild sense of being "out-of-it".

If anyone can add their 2-bits to this based on experience, I'd really appreciate it.

No further answers from the neuro. follow-up visit, which is frustrating, but he isn't giving up on me, he said, and is interested in getting to the bottom of it all.

OMG, I do so sympathize with what you have been through. I love your (Freudian?) use of 'badpans' . Fortunately, I was not subjected to that humiliation and was allowed to get up to go potty trailing my five lines behind me . Your memory gaps in and of themselves must be a bit frightening; that drug obviously did not suit you. I was put on two IV drugs at the same time, Lopressor and Cardizem, neither of which did anything to take me out of a-fib. They then took away the cardizem and put me on amiodarone, which also didn't work. I kept telling them I needed potassium, but the pharmacist was a bumbler who couldn't find anything that was gluten free Finally Dh consulted our local compounding pharmacist and he asked why the heck they weren't giving me potassium elixir? Well, they finally decided to give me IV potassium along with magnesium, and I popped back into normal sinus rhythm within a couple of hours Who says the patient doesn't know anything???

I ended up home with a prescription for amiodarone, which not only didn't work and is meant for ventricular arrhythmias, not atrial, but which is extemely dangerous for some of my health conditions and has the most horrendous side effects - just totally not the right drug for me, so I am not taking it. I was already experiencing the blurred vision in the hospital which is one of the side-effects. I have my liquid potassium which I take religiously, but I am not taking the aspirin they want me to take. I once had a hospital roommate who was admitted with bleeding from the bowel from taking baby aspirin. I have had enough gastric problems.

But as I reported elsewhere, I have found myself a cardiologist I really like during this process so it was not all in vain I will call her on Tuesday to set up an appt. - I was discharged Friday too, and I agree, once you get transferred from ICU to a general ward you get absolutely no attention at all, and if they do come they have this exasperated attitude - I guess they are overworked and we have been spoiled with the attention of the ICU nurses who were absolutely wonderful, with one notable exception.

Anyway, I am so glad the clonazepam is working for you and hope that you are well on your way to solving the problem. I have a friend who had one isolated seizure in his sixties who was placed on that drug and he has had no further problems, although I truly suspect he has a gluten problem (thinks diarrhea is normal )

Stay well, and keep us informed of your progress.

[gabby]

What an ordeal for you. I hope they get to the bottom of this all. The drugs you are currently taking have some really nasty side effects, plus they can be addictive...but I'm sure your neuro is just trying them out to see if they work and he/she is not thinking of having you take them on a very long term basis. There is a class of drugs I know of that might be of interest to you and your neuro. They are called carbonic anydrase inhibitors and are used to treat a variety of problems including seizures. I know of it because years ago, I also went through a similar thing that you are experiencing, and spent 2 weeks in hospital while they fed me all sorts of drugs and did all sorts of tests, but nothing worked in a significant way until they decided to try this class of drugs and started with the acetazolamide. At first they gave me a huge dosage (1000mg) and it was waaaaay too much. After some fiddling, it turned out that 150mg was just right, and it worked nicely for me. The drug has side effects that are very manageable, and it is not addictive. Acetazolamide is a sulfa drug though, so if you are allergic, then you'd have to try one of the other carbonic anhydrase inhibitors (there are several).

Here's a link to more info on carbonic anhydrase inhibitors and their use in seizures and epilepsy: Open Original Shared Link

I don't know if any of this helps you out, but I thought I'd give you the info just to keep in your back pocket. Your neuro sounds like a nice doctor. I hope you find the solution to your problems quickly.

Hope this helps.

[masterjen]

What an ordeal for you. I hope they get to the bottom of this all. The drugs you are currently taking have some really nasty side effects, plus they can be addictive...but I'm sure your neuro is just trying them out to see if they work and he/she is not thinking of having you take them on a very long term basis. There is a class of drugs I know of that might be of interest to you and your neuro. They are called carbonic anydrase inhibitors and are used to treat a variety of problems including seizures. I know of it because years ago, I also went through a similar thing that you are experiencing, and spent 2 weeks in hospital while they fed me all sorts of drugs and did all sorts of tests, but nothing worked in a significant way until they decided to try this class of drugs and started with the acetazolamide. At first they gave me a huge dosage (1000mg) and it was waaaaay too much. After some fiddling, it turned out that 150mg was just right, and it worked nicely for me. The drug has side effects that are very manageable, and it is not addictive. Acetazolamide is a sulfa drug though, so if you are allergic, then you'd have to try one of the other carbonic anhydrase inhibitors (there are several).

Here's a link to more info on carbonic anhydrase inhibitors and their use in seizures and epilepsy: Open Original Shared Link

I don't know if any of this helps you out, but I thought I'd give you the info just to keep in your back pocket. Your neuro sounds like a nice doctor. I hope you find the solution to your problems quickly.

Hope this helps.

Thanks, gabby - I really appreciate you taking the time to tell me this!

[masterjen]

I was thinking about the recent follow-up I had with the neuro., and he suggested that the seizures I have are not classic epileptic in nature, and that what might explain the symptoms is some form of dystonia. I put this out of my mind until recently, and when I googled this I learned that there is a form of this that is debatably a form of epilepsy (debatable, because often EEG and MRIs are normal in spite of seizure-like activity) and in which the "seizures" occur during non-REM episodes of sleep or that phase of almost-asleep (when mine have occurred), and become worse with fatigue ( as mine do). There is one type called paroxysmal nocturnal dystonia, that sounds unusually close to what I've been going through. Anyone care to comment? Anyone know anything about this??

[kareng]

I don't know much but many years ago I heard a neurologist speak about the effects of not sleeping on your brain. He said that he could induce anyone to have a seizure if he kept them awake long enough. He also said that for some people it doesn't' take as much fatigue as others. Also said that fever seizures as a child or adult could mean you are more prone to fatigue ones as an adult. Unfortunately, I do not remember his name but this might give you a starting point for your research.

[gabby]

I don't know too much more about this sort of thing, but I do know that once they rule out the big stuff...then getting to the bottom of the problem involves a lot of detective work on the part of the neurologist. Usually they will continue to rule things out (MS, Lupus, etc.), and along the way they will pick up extra clues. It could mean that it will take time to figure this out. It will help if you continue to keep track of everything you do, what you are eating, how you are feeling....and be a part of the investigative team. And don't think that some things are too mundane to include in your notes. Back when they were trying to figure things out with me, I happened to have braces (full metal on upper and lower teeth). By tracking through my notes and my calendar,I noticed that I got these incredible migraines exactly 24 hours after having my braces tightened. Also, I'd have terrible coordination problems the day after the pest-control guy would spray the lawn for grubs. Things like that help a lot.

Hope that helps!

[brandycolwell]

to the poster:) my symptoms sound like yours, sort of. closest thing i have heard anyway. i just woke up like any other day about 6 months ago, and all my muscles were shaking, what i then thought were tremors, and now i know that im shaking when i try to use my muscles because they are so weak. my legs, my neck, and arms. also, i have muscle spasms in evry muscle in my body.. and looking back, i was having muscle spasms in my stomach long before this started. i have seen a neuro, who thought i had wilsons disease, i dont. my doctor did find out that i have hashimoto low thyroid, low b12, low folic, and started treatment that day, that was 3 months ago, and i feel not 1 bit better today. i just had a celiac panel ran today, because there has to be a reason why i am b12, and folic deficient, and have all these other symptoms...plus i have always had tummy problems. has anyone here ever heard of celiac disease causing extreme musle weakness, like so weak that your arms and legs shake when u use them>? ill add that im only 29, and a mommy to 3 amazing kids, who i need to be healthy for!

[mushroom]

Hi Brandy, and welcome. And yes, it does happen, just like you say. It is scary. The low nutrient levels we can understand since our bodies have not been absorbing things, the Hashimoto's because gluten affects our thryoid, but this muscle weakness, these spasms, it's not something you can explain in your own mind on any rational level. But don't be afraid - this will pass. You just have to get your body back in balance again. I woke up one day, and I could not climb the stairs, I could not get up off the toilet - it was frightening. All due to gluten. I bet your tests come back positive. But even if they don't your symptoms are definitely in my mind caused by gluten, what is called non-celiac gluten intolerance, and by quitting eating it you will resolve them. However, do keep eating some gluten for now., if you can stand to, because they will probably want to do an endoscopy with biopsies, and if you quit eating gluten now that could affect the results of those tests. If you con't care about verifying the diagnosis with biopsy you can quit right now and start feeling better and being a more involved mom to your children. However, I would add, it would be important for your children to know if you are celiac, because their chances of also having it are quite high. And it would be important in how you raise them and what to watch for in them.

Lastly, do not despair. celiac disease is not the end of the world. It is the only disease that does not require surgery or prescription medications. It merely requires you to stop eating gluten, one of the easiest treatments to tolerate that exists today (once you become familiar with the diet, which is not that difficult).