Medication sensitivity

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Garbo

Garbo

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Hello all. I am not with it today!

My epileptologist and I discovered some time ago that I am sensitive to medication-- not just AEDs, but other medications as well. I inherited this sensitivity from my Grandma. What this means is that I tend to go toxic on medication rather easily. I just went toxic on my fourth AED (zonegran), even though the medication was controlling my seizures.

My epileptologist suggested alternative forms of treatment since I really cannot take medication since the meds make me so sick, although the main one alternative forms of treatment he considered are the VNS implant and surgery, the latter of which I asked about and have since ruled out.

I was wondering if someone has had something similar (sensitivity) and if so what did you do? I have gone through about a dozen medications now because we have to prevent toxicity or in the case of the four, I went toxic. And I'm not sure I want the VNS implant.
 
I totally understand! It's horrible. Be very thankful your Dr. is working with you on it, mine just keep giving me more meds to 'help' with the side effects. They never listened or understood that I am sensitive to meds. Licensed drug dealers. I finally decided to just deal with it and only took my Ep. meds.
I looked into alternatives, I found CBD oil (hemp seed oil) I did a lot of research on it, ordered some, I was skeptical but it's been a total game changer for me. 20 min after I took it, holy anxiety relief! Every day since I've been taking it I've noticed a lot of 'changes' emotionally, physically, mentally, I've cut back on my meds and.........I haven't had a sez. in about 3-4 weeks! I could write a short novel on everything, all the changes. It's been an exciting adventure for me.
 
I have a VNS and it has helped me a lot with my seizures. I am still having them and I'm also taking meds.

If you were to get a VNS there is a possibility that you may not have to take meds but there is a no guarantee for that.
 
Would love to know more about hemp seed oil, how it's used and what improvements you've noticed. Love the idea of using natural alternatives. TIA!
Cindy
 
valeriedl said:
I have a VNS and it has helped me a lot with my seizures. I am still having them and I'm also taking meds.

If you were to get a VNS there is a possibility that you may not have to take meds but there is a no guarantee for that.
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My Dr. thought about surgery but my sez. are generalized, not an option. He also suggested the VNS but he said it was about a 60% chance that it would work and if it didn't they wouldn't take it out, 'it wouldn't be neccessary' I chose not to try it. If the odds were better I may have.
 
valeriedl said:
I have a VNS and it has helped me a lot with my seizures. I am still having them and I'm also taking meds.

If you were to get a VNS there is a possibility that you may not have to take meds but there is a no guarantee for that.
Click to expand...
My Dr. thought about surgery but my sez. are generalized, not an option. He also suggested the VNS but he said it was about a 60% chance that it would work and if it didn't they wouldn't take it out, 'it wouldn't be neccessary' I chose not to try it. If the odds were better I may have.
 
cawhitern, my improvements are many, Way less anxiety, 0 depression, focus is much better, I'm not in a fog all day, memory improvements, short and long term, my hyperphotosensitivity is not as bad, energy level is up, digestive system has improved, my hair stopped falling out, my eyes have cleared up,(side effect from one of my meds made them kind of yellowish), my comprhension is better, I could go on and on but those are some of the highlights.
I'm suppose to be on 600 mg. of Lamictal a day, (I take 300mg a day) I'm suppose to be taking 1750mg of generic keppra a day (I take 500mg a day)
I started the oil 4 mo. ago. healthyhempoil.com has a lot of info on it. I like reading the reviews, it's helped people with autoimmune disease, arthritis, epilepsy, chronic pain, cancer, alzhiemers, all kinds of conditions. Some people give it to their animals that have a sez. disorder, arthritis, digestive issues. It comes in many forms, nuts, oils, vapes, food, candy, gum, lotions and more. Check it out, it's been a blessing for me, can't wait till I cut back on my meds again, hopefully I can quit all together, others have been able to.
 
I'm med resistant to almost every drug in the Tegretol except the original Tegretol, and I'm also allergic to 5 drugs.
I've had the VNS it stopped working worth a flip after so long.
I'm Refractory and I've never been controlled long enough to get a license, I might go between 1-3 months maybe but usually it's a few weeks at the most.
Know one understands what I've been through unless they have uncontrolled seizures also or have at one time.

I've taken over 20 different drugs for my seizures, had brain surgery,the VNS.I now take Topamax 300Am 200MG pm Tegretol 300x3 phenobarb 32.4x1

I would love to be able to come off every AED I'm on, and I don't think that'll ever happen.
 
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When my doc told me about the VNS I asked how affective is it and will you take it out if it doesn't work. I didn't like the odds and he said he wouldn't take it out there would be no point it would be just another procedure. I told him to let me know when the odds get better, maybe I'll try it. I totally hear you on the meds, too many for too long. Side effects are a b***h. I got fed up, tired of fighting the whole thing, feeling like crap all the time so I decided to get proactive, look for an alternative. I have cut back on both my meds a lot in just a few months. Last weekend I cut out my afternoon one alltogether. Accidently. We were fixing fence, I lost track of time, relized I was 2 hrs. late. I was doing fine, the next day I skipped it just to make sure it wasn't a fluke. I did fine, no more afternoon meds. I'm actually suppose to be on 200 mg. Lemictal 3x a day, 1750 mg. generic keppra 2x a day. I'm now taking 100 mg. Lemictal 2x a day and 500 mg generic keppra 2x a day. I'm a skeptic when it comes to different things but I had to try something. The CBD oil has changed my life, I have my life back! It's a blessing in a bottle. You sound like you might be in the same place I was, try the oil, you have nothing to lose and everything to gain!
 
I'm very sensitive to meds. Except when I was a kid I have never taken a "therapeutic" dose. Even very small amounts make a difference. The most important thing is that it's working, not what your blood levels are. (Some doctors don't understand that). If you reduce your meds, be careful, because you may be fine for a while, but eventually it can be a problem.
 
Before I got my VNS my neuro also told me that there was about a 60% chance of it working. My seizures were so bad and I was having so many that I though I'd give it a try. As I said it has helped a lot but I'm still having them.

If you get a VNS it can't be taken out even if it isn't working. Once you have a VNS in your body, working or not, it cannot be removed and you are unable to have an MRI because you will have metal in your body. That's something that you would want to think about too before you would get one.
 
Thanks for the wonderful and very informative responses, everyone!

My epileptologist said he would put me on hemp seed oil in a heartbeat, but the problem is it's illegal in my state. My sister (who is in the medical profession) suggested I find a list of online sites that sell it and I bring in those to him to talk about dosages, safety, etc.

As awful as this sounds, it does make me feel a bit better knowing that others are sensitive too. I thought there was something wrong with me.
 
You can buy CBD oil on line. I'ts legal in all 50 states. It's tested, they can't sell it if it contains more than .3% THC.

Wouldn't wish any of this on anyone else but it is nice to know your not the only one.
 
Just curious Garbo: are you sure your doctor meant "hemp oil" and not CBD oil? http://www.mintpressnews.com/hemp-oil-versus-cbd-oil-whats-the-difference/193962/
Hemp oil does not have the concentration of CBD that CBD extracts do, and therefore one would have to consume far more hemp oil than CBD oil to get the benefits. Children with severe epilepsy who are given so-called marijuana oil with low THC are generally taking CBD oil and not hemp oil.
There is confusing information out there. Purchasing sites and other non-medical sites that talk about hemp oil say one thing, and the more scientific sites say another. Personally, I would err on the side of caution and really investigate things carefully. For anyone considering purchasing hemp oil in hopes of treating seizures, email or preferably write to the supplier and ask for information on their quality control measures so you can learn for yourself how pure the product is, the exact concentration of CBD that is in their products, the processing method, purity of the plant growing environment, etc. Epileptologists likely know how much CBD to try initially, and work closely with your doctor's full knowledge of what you are doing so other medications can be adjusted appropriately.
 
Goodness, I am such an idiot! Thank you for clearing that up for me! I have a lot on my mind right now so I didn't differentiate between the time (like a dunce). Anyway, yes he meant CBD oil. Can a person can get hemp oil simply from a place like Whole Foods? Or should I just order it?

Thank you all for your incredibly insightful input! I am so excited to try it! :)
 
Here's some information about cannabis and seizures... I can't post links, but you can check out the information on the Epilepsy foundation under "treating seizures Medical Marijuana and Epilepsy
 
Garbo, Your not an idiot. Between life and meds it gets hard to focus. I call it 'scatter brained' What I get is Cibdex drops or spray. I usually buy it from healthyhempoil.com or hempmeds.com but they were out of stock. I gave my sister in law some at a family reunion over the weekend. She absolutely loved it. The next day she wanted me to order some for her. Anxiety (school teacher, 5th grade) Where I usually get it, they were out of stock. I found it on livetobewell.com for 25.00, half the price I've been paying. I don't know if you can get it over the counter, hemps seeds and stuff like that you can, not sure about the oil.
 
BTW, Garbo, the Cibdex brand is also for sale on Amazon, often cheaper than a lot of the other sites. They have the spray and the capsules.

That price quoted by 1dayatatime above is a really good one though.

I've stopped using the spray due to all the extraneous stuff in it like glycerine and sugar alcohols. I still take a couple of the capsules at bedtime.
 
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Does anyone know anything about CBD oil, perhaps where I could get it apart from a road trip to Colorado?

Once again, thanks so much for all of the information!
 
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