Going in the hospital Monday...911 today.

[seizures4ever]

Hi everyone,

Well, today has been interesting...
I have these periodic weak spells that take over my whole body, and I can hardly move my limbs. I haven't called 911 in years, but today (laying in the floor) I called. They came and said my blood pressure, pulse, and blood sugar were normal. I told them I did not want to go to the hospital (I know that there is really nothing they can do). My two year old just patted my head and said, "eww ok mommy?" Broke my heart.

Anyway, I went to my neurologist today. The docs. are not sure if these spells are a neurology issue or a rheumatology issue, but it is definitely something (both doctors agree). They just can't figure out what it is exactly. onder:

I told my neurologist that I wanted off of ALL my anticonvulsants (all four of them). She said she can't do that...but she is going to put me in the hospital on Monday and ultimately take me off of two of my meds! :bigsmile: Maybe I'm just getting excited over nothing, but I would LOVE not to have so many side-effects!!!

Wish me luck! -Julie

 

[Meetz1064]

Awwwwwww

Good luck, Julie!

It sucks that you have to go through this, though. It IS heart-breaking when your kids are watching you like that, though, isn't it?

Take care......:rock::rock:

 

[RobinN]

I told my neurologist that I wanted off of ALL my anticonvulsants (all four of them). She said she can't do that...but she is going to put me in the hospital on Monday and ultimately take me off of two of my meds! :bigsmile: Maybe I'm just getting excited over nothing, but I would LOVE not to have so many side-effects!!!

Wish me luck! -Julie

What is it about this that is feels very wrong to me? If you want off the drugs is their nothing that you can sign that says you will not hold them accountable? A conventional doctor will tell you this and then threaten not to care for you any more if you do this, but ultimately this is your choice. Never smart to do it without medical supervision though.

If ultimately you want this, I suggest you find a doctor that is willing to look into alternatives. Now if you can prove that any of these cause more seizures than not then they have no right to keep you on them.

I was starting to write that it is doubtful that you will find a conventional doctor that is willing to walk the alternative route with you, but then I thought about our USC neurologist and she is very open minded. Yet I am the one that is basically calling the shots, and she discusses the pros and cons with me.

Good luck at the hospital. Just know it will be about a month before you see relief from stopping those two medications.

 

[Bernard]

I hope they are able to find some answers during your hospital stay. Have you seen the http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ thread?

 

[BuckeyeFan]

Good Luck Julie

We will ALL being thinking of you during your stay and hope to here from you soon. Best wishes from those of us who can understand at least a little bit of what you are going through.

:rock:

 

[Georgiagirl88]

Hi Julie,

So sorry to hear about the 911 call..but maybe this will ultimately get you some answers. I will be thinking about you and wishing you well! Let us know how you are doing. Take care!!

Michelle : )

 

[morgan381]

Hi Julie,

Sorry to hear you're not feeling well. You do have the right to determine your treatment, after all, it's your body. Glad to hear you may be getting rid of some of the meds. Hope that goes well!

Morgan

 

[skillefer]

Hi Julie! Sorry to hear that you had to call 911, but I'm glad to hear that you might be getting off some of your meds soon. So just think, there was a silver lining. I hope everything goes great for you at the hospital, and I'll be keeping you and your family in my prayers. Best of luck.

 

[seizures4ever]

I so appreciate all of your support and ideas. I went to your link Bernard and wow!-that is a load of very useful information. With my vertigo, weakness, and headaches this week, it will take a few weeks for me to read all the information that you give reference to! You and Robin seem so knowledgable about alternative treatments. I'm just curious, how do you know the correct/therapeutic dosage of vitamins and minerals? I want to try to use something different than simply "modern medicine" which is nearly killing me!

To all my new, dear friends. Take care of yourselves and thank you for your support.
Lots o' love -Julie

 

[montse]

I hope you get better. Take care.

 

[RobinN]

I'm just curious, how do you know the correct/therapeutic dosage of vitamins and minerals? I want to try to use something different than simply "modern medicine" which is nearly killing me!

It was an issue that I encountered when I first began this journey. Luckily I found a doctor (I paid dearly for) and he recommended the basics. He did hair, saliva, and blood tests. Then he made these recommendations:
Vit B complex
Taurine
NAC (no longer use this at the moment)
L-carnosine (no longer use this at the moment)
Fish Oil
Magnesium
bio-identical progesterone

UCLA, when we were there for a VEEG, they wanted a list of all medications for Rebecca. I listed the above. The pharmacist to my face said she did not know what Taurine was, and the doctors said that the progesterone was damaging and should be discontinued. They did not look at any previous testing. They were even arrogant enough to say that the previous EEGs taken most likely were not read correctly nor did most neurologists have proper equipment. I learned from that overnight stay to do my own research so that I would be properly educated to discuss the situation. It was a good but difficult lesson to learn.

I researched all of the above vitamins, via PubMed and studies and found that all of them were beneficial at the current time. The Beverly Hills doctor did not steer me wrong. He is into Bio-Med but is also an expert in hormones and womens issues. I trust him without a doubt.

The next thing I did was research for extreme dosages and gave myself a range. I think the only thing I push at the moment is magnesium, but that is with our neurologists blessing, and Omega 3 she is taking twice the RDA.

I am constantly reading and doing searches of amino acids or vitamins that are suggested and try to make it fit or not. I know what my daughters symptoms were and are, and when starting a vitamin, I do it one at a time. It is experimental, but I listen to what she tells me.

I need to point out though that I first started with nutritional changes. I believe the suggestions that many supplements are wasted because they are not properly absorbed into the system before being eliminated. You must use the best quality your pocketbook will allow, and make sure that your intestinal tract is healthy and ready to absorb properly. Healing... that is a priority.

This is how I approached the subject. I called a nutritionist and was told she was not willing to see my daughter if she had a seizure disorder. She had nothing she could do to help. ...... okay
so... once again ...on my own. When someone (my husband) questions what I am doing, I print out the information and let him read it. He had never heard of the word gluten prior to Rebecca's seizures. Now there are articles in major magazines and the local newpapers. It is not just one mom over reacting. All the major headache websites now list magnesium as a possible remedy. It takes a LOT of time, and a tremendous amount of patience to search for the answers to your questions. That journal that we speak of often is one of the best tools that you can use to figure out the puzzle.

Good luck.... as NIKE says.... just do it!

 

[Loudmouth]

Good luck! I know how debilitating side effects from AED's can be. I hope you feel better soon. HUGS for you and your 2 year old...just remeber that children are more resilient than you think, mine have grown up from a very young age seeing me have seizures and now do not get scared and even my 4 year old knows when to just sit by me, when to call my mum (by pressing speed dial 1 on my phone), and when to call an ambulance (by pressing speed dial 9 on my phone). They take it all in their stride and it becomes a nornmal part of their life, just like brushing their teeth, that mum has seizures. My best wishes to you, and I hope your hospital visit helps you!