Update from my last post

[momof3boys]

Well, last night I had to go to the ER. I was having irregular heart beats, and since monday night, ive been having seizures during the night. My dr started me on a new medication, Pantoprazole, to help treat what he thinks is GERD, which I started on saturday, and by monday I felt different. When I started to feel the difference in my heart rate, I went to bed that night not really feeling right. Within an hour of laying down, I had a seizure. I didnt know why I had it, but I couldnt sleep all that well. It happened again on tuesday and wednesday night, and then yesterday afternoon while I was at my parents house. When my mom asked what kind of new medication I was put on, I got out the papers to check the information on it and found that if a person is in a GERD medication for too long it can lower your magnesium levels, causing seizures and irregular heart rate. I was even having some pain in the area too when my heart would go faster. I got concerned, and my mom thought it was to go into the ER to make sure things were ok with my heart. They hooked me up to an EKG, did some xrays, drew some blood... everything came back normal. The dr said it was up to me if I wanted to go back on the medication, but Im not going to even try it again. Its weird that I could go from May through November with only being on Keppra XR and having no seizures, and then within a couple of days of starting this new medication, I start to get the irregular heart beat and seizures. I really think it has something to do with this medication, so I wont be taking that no longer.

Ive been at home resting today, I didnt home til really late last night, like around 3am. I couldnt drive home, so my sister had to take me home. Of all the days, this had to happen on thanksgiving! What a day to remember!

I even looked up the information, and what I found online said it can cause those symptoms Ive experienced, but the ER dr said from her looking it up, it didnt cause those symptoms... Here's the link I found my information on...

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000177/


Some side effects may be serious. If you experience any of the following symptoms, call your doctor immediately:

blistering or peeling skin


rash


hives


itching


swelling of the eyes, face, lips, mouth, throat, or tongue


difficulty breathing or swallowing


hoarseness


irregular, fast, or pounding heartbeat


excessive tiredness


dizziness


lightheadedness


muscle spasms


uncontrollable shaking of a part of the body


seizures



Pantoprazole may cause other side effects.

 

[hootie]

Sorry you had such a rough holiday. Hopefully you have this figured out now.

Our bodies do not read the product inserts. Just because your side effect is not listed (well, technically it is...under the "other" category) does not mean the med is not causing it.

For my family, side effects frequently happen if they take meds so I tend to look there first if they are on a med and having some strange symptoms.

Did the doc chech your intracellular magnesium levels? Can you discuss adding a magnesium supplement with your doc? How about making an effort to consume foods higher in magnesium to increase your levels. Most people in the US are deficient in magnesium.

Praying for seizure free days and nights for you!

 

[momof3boys]

After they took some blood and got the results back, the dr came in saying all my levels turned out to be normal. She said was my magnesium level was, but I cant recall what number said. At the time I was half awake so badly wanting to leave that darn hospital. I just told her I wont be taking that medication no longer, she said it was up to me, but in her opinion said the medication wouldnt cause seizures to occur. Heck I know my body better than her, so Im going to go with what my gut tells me and try it without.

My mom told me to look into taking a multi vitamin that has the magnesium in it, but Im def looking into the foods too that has more in them as well.

 

[deeds]

How very frustrating for you. It's pretty amazing how we really have to be our own doctor's nowadays. I am sorry that you had a rough time and I hope you have had a nice restful day.
I take a liquid magnesium supplement. I believe the company is called Amazon Trading Company. I think that many of us are deficient in magnesium but we are actually more Calcium in our thinking!
Check out The Magnesium Miracle by Dr Carolyn Dean....

Mostly feel better,
Deedee

 

[deeds]

I just thought of something else you should check out....
Dr Mark Hyman and Magnesium
and....
apparently blood tests for Magnesium usually do come back normal.
The Mark Hyman podcast is very informative!

Dd

 

[momof3boys]

thanks DeeDee!

I will look into that!

 

[epileric]

Do watch Mark Hyman, I know that he is not well respected by the more science based doctors. Neurologist Steve Novella explains why his "functional medicine" is unfounded.

Mark Hyman, a proponent of so-called “functional medicine” promoting himself over at the Huffington Post (an online news source that essentially allows dubious medical infomercials to pass as news) has posted a particularly egregious article on personalized medicine for dementia. In the article Hyman distorts the modern practice of medicine, the current state of genetic science, and the very notion of “disease.” It is, as usual, a fine piece of medical propaganda sure to confuse many a reader.

Personalized Medicine Bait and Switch

 

[deeds]

I have had nothing but one misdiagnosis after another by the "science based community". That is 52 years (almost 53) of bizarre non diseases, Hodgkins Lymphoma and Lupus to name just 2 major events because I don't want to bother you with the others for obvious reasons, mostly because I do not believe in wasting other people's time.
I was referring to Mark Hyman in reference to Magnesium deficiency and how a small change can make such a monumental change, at so little cost. If nothing else, it's great for constipation. I never had Hodgkins Lymphoma nor Lupus however I do have seizures. They are probably different from yours but all brains are different so that makes sense to me. It is the only reason that I am here. Wish I was out for a drive but that just isn't gonna happen. Not in this lifetime. I follow my intuition but I also believe that meditation lowers stress and therefore raises seizure thresholds. Makes sense to me, mention it to a neurologist..... they laugh at me.

 

[RobinN]

I too believe Dr Hyman thinks out of the box, and he believes given the right nutrition, the body can work to heal itself in many situations. He is respected by those that follow him and others that are open minded. If his recommendations were not working for so many, I doubt he would be a name that we are even discussing.

Did any of you see the special last night about the heart on CNN, with Sanjay Gupta?
Evidence that a plant based diet is improving the lives of many that have been diagnosed with heart disease. Even one that was told her only recourse was surgery.
There were doctors interviewed, that did not agree with the recommendations being made, however the tests were proving them wrong.

Expensive quick fix = NOT

 

[deeds]

About Mark Hyman....

Not only is he a fellow Canadian but he shares his own experience with fibromyalgia. I think it is very special when a doctor gives you glimpses of their own life experience.
I would much rather take a little bit too much of Magnesium than be prescribed a benzodiazepine for Seizures and then trying to get off of it without suffering from Benzo withdrawal...... Everybody should google "Stevie Nicks, from Fleetwood Mac and CLONAZEPAM".......OUCH....

 

[RobinN]

Magnesium gave me my life back. I suffered for 30+ yrs following "conventional medicine". Took every pharmaceutical drug recommended. It was after a "questionable" doctor suggested magnesium at higher doses than the RDA, that I now have become migraine free for 6+ yrs.

God Bless those that are willing to recommend out of the box approaches.

 

[hootie]

My oldest son had daily 2 hour meltdowns when he was young...up until about 3.5. Years old. I took him to a doc that put him on high dose magnesium and zinc. Within 2-4 days the meltdowns faded away. I' m sure if I tried to address it the conventional way he would have been an some FDA approved drug that had not been tested in children...and somehow it would have been ok since all the docs do it...

 

[deeds]

I never tell anybody else what to do or take but when you google MAGNESIUM DEFICIENCY, the list is as long as a mile and getting longer. I would also rather take something natural, and give it a shot before taking a drug with a list of side effects that isn't even completed yet. We are the ones who in the end need to swallow the pill and I take tremendous pride in the amount of research I will do before I swallow it.
Doctors might find me non compliant but I don't really care. Power is knowledge and knowledge is power.
Last year I was prescribed Clonazepam for my CP Seizures and all the stress that goes along with this affliction, I said "No thanks, I don't want another benzo" I already take Frisium thank you very much. The dr said fine, I respect that and wrote a prescription for "Rivotril" did she think I wouldn't know they are the same.
We might have seizures but we aren't stupid!!!!!! We must stand up for ourselves and if we can't we must have a friend or family member to advocate for us.
I have been on Frisium for about 25 years and now they want me to wean off of it. Weaning off a benzo? First sign of withdrawal? SEIZURES!!!!!

 

[momof3boys]

Just wanted to give a quick update!

I havnt taken the medication that was prescribed to me on friday of last week, for the GERD Problems my dr thinks I have... for two days now!... I had started it on 11-18-11. I took it through 11-24-11. I havnt taken it for two days and so far no seizures has occured! I've been feeling alot better. Alot less fast heart racing moments, and the pain that Ive had in my left side has improved alot! I seriously feel like when Im writing this, im going to be hit again with pain.... KNOCK ON WOOD.... LOL.

Anyways, I really think it was due to that medication. Not taking it for two days now and have had no seizures and the pain has improved! I left a voicemail for my neuro office, but of course they were out til monday. So I will wait to hear from them to give them the update on how things are going. Im hoping things just getting better!

 

[hootie]

Kristin--
Glad to hear you are feeling better...and no seizures!!! Great news!!!

 

[momof3boys]

Thanks! Yes, I am feeling much better! I found it odd that I could go with being only on 1 seizure medication since May and have no seizures, but then comes on these seizures out of no where. Now If I hadnt of started any new medications, i would be alittle more concerned, But my gut told me to quit the medication that the dr prescribed for my GERD and see if that helps. So far so good!

 

[hootie]

Now you need to get to the source of your GERD. Is it your meds? Could the med be causing a depletion of a certain vitamin or mineral that is causing GERD? Some people do well by using apple cider vinegar for GERD. I don't know anything about it but i'm sure you could track down info on it to see if it might be something to try?

Good detective work!

 

[momof3boys]

Yeah it came out of blue around the end of July. It started out with just mild pain in my lower center chest area, and by the end of the first week of august, I was in so much pain I thought I was having a heart attack! Luckly, all the tests came back saying my heart was fine. They had to me on omeprazole (generic for prilosec) at 40mgs each day, and it did the trick for a couple of months. My dr said to take it til I felt better and the pain was gone. He said it should heal on its own, so once i felt better and the pain went away, thats when I quit it, and went for a few days without it. But once that went by, the pain came back even worse than when it started. Since then, I've had to deal with the pain of GERD, bronchitis which came on just within a week of that, and since then I've been trying to recover from the pain which I think was from both. Trying to heal from the bronchitis and get back on medication for the GERD. When my dr told me to double up on the medication, I kind of wondered if he knew what the heck he was talking about. I tried that, and had even worse chest pains. Then he tried me on this new one and it was really bad. Ive never tried apple cider vinegar. I may have to look that up and try it. At this point Im willing to try anything! I just cant wait to see that specialist on december 15th. When I called to get a time to see them, I was told I had to wait 6 weeks to get in! Its been a long long wait so far... But Im hoping the pain doesnt get too bad while the time passes. So far Ive gone two days now without any medication to treat the GERD and so far things are going ok.... ( I hope I didnt jink's myself typing this...) Anyways... I just wonder if it was ok being on that type of medication for so long, and if it was possible it could cause problems if being on it for such a long time? I see when I look the GERD medications up, it says to take for 6-8 weeks. Heck i started taking that in August! Over 3 months! I just wonder if it may have caused me more problems being on it for that long?!

 

[deeds]

yay