What the?

I think the majority of you know by now, that I have epilepsy. I was diagnosed when I was about 13. That’s a whole other long story that I’ve blogged about before on here. Anyway…

This weekend it came time to renew my prescription for the medication that keeps said epilepsy under control. I usually keep ahead of this so that I never run out.  I was a little ahead but not by much, 5 days…I thought.  For reference sake, it turned out to be three days.

Hubby’s work benefits just kicked in, and without them it was too costly to stay further ahead in the medicine department. I’m giving you all this back story for a reason, stay with me if you will.

I called the pharmacy on Saturday to renew these miracle meds. (pft) ahead of time as I always do. This time to my horror was different. I had a very frazzled (Not at me) but kind pharmacist answer the phone. She told me that there is a Canada wide shortage on the medication that I need. I’ve never in my entire life experienced anything like this.

No one, not doctors or pharmacies in all of Canada can get enough for their patients.  This gets worse…

They expect this to be the case for at least 6 months, but it could be longer. No one knows. No one is being told anything.

My pharmacist is actually having to constantly turn down requests for this med.,so she can cater to her customers first.  She rations what they do have (Which is very little) to her regular customers.  It’s so extreme, that she was only able to give me enough meds. to last me another 7 days. Add that to the 3 days (That I thought was 5 days) and that gives me 10 days.

The pharmacy can’t even promise that they will have more to give me in 10 days. They can’t promise this because what they’re told, and what is done is not consistent.

You may be thinking; “Well just find another med. to control the seizures.”

It’s not that simple and here’s why.

I’ve been on this med. for over 20 years. It’s very addictive, the second I lower the  dose by even half (I’ve tried in the past) I begin to have seizures. Not only that, I can’t sleep. I’m dependant on this med. to sleep. No sleep=seizures.

I would have to spend weeks coming off this med. (Which is time I wouldn’t have given the circumstances) very slowly, whilst just as slowly starting a new one.

The last time I tried this, it was bad. The width-drawl is brutal and causes seizures, not to mention all the other side effects of both meds. The old and new.

Add into this scary story, that I’m allergic to a lot of the anti-seizure meds. So again, switching to a different one is not a good plan. Most of the medications in this family have a number of pretty awful side effects but the one I’m on, has less than the majority.

If I were to have to start a new kind, I would likely be a zombie all the time. Right now, I just deal with lethargy.  I don’t want to be a zombie.

All this to say, I don’t know what’s going to happen in the next 10 days, but I sure hope I can continue to get the medication I need or I’m in trouble as are many others dependent on it.

Have any of you ever experienced anything like this?  What would you do?

There is hope…I hope!

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101 Comments

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101 responses to “What the?

  1. Uh oh… I’m sorry to hear that, Zoe. I hope something changes soon and that you’re able to get your meds.

  2. Just so wrong…I hope it works out, Zoe. x

  3. Number one, you will be in my prayers! I’ve had to deal with that with my depression medication, but it was just my state not the whole country. I ended up just dumping that med and dealing with the side effects of withdrawal, because they were better than the side effects of the actual meds….

    However that is not your case. I hope they can get you the same medication, and they SHOULD put you high on the list because of your symptoms…however they may not. I’d inquire into it with your doctor. It’s not the best advice, but it’s all I got. :-(

  4. Not that it would be fruitful but can you give the name of the med ….what if other Canadians like myself called our pharmacies around us and asked them how much they had …maybe they could send to yours….just a thought…. Diane

    • Thank you Diane, I’m guessing they won’t our pharmacy won’t. They are getting constant calls about whether they have it or not. Our pharmacy won’t give it out to anyone but their own customers at this point and that’s being tightly rationed. The name of it is Clobazam or Frisium

  5. I have never heard of this. Very scary. Have you spoken with your doctor to see what they say about potential sources?

  6. Oh my gosh, that’s awful!!! May I ask what the med is? Maybe you can find someone who has some to help you out? I have several different types of meds that I’m not taking anymore, I’m sure other people do as well?

  7. it’s the same in ireland and other places, dealers buy medicines in one jurisdiction and sell it in another, where the profit is higher, i expect that’s the problem everywhere, people exploit opportunities, no different to fracking i suppose, till mother earth has enough, best wishes

  8. Can your pharmacists get some from the States? I haven’t heard of shortages here. There may be cost issues in that… Can’t be helping your anxiety levels worrying about this. My grandmother had seizures and was on a medicine all her life. I don’t know which one. I will keep my fingers crossed for you. I like a particular kind of mylanta, a liquid antacid, that is milky, unflavored and helps me sleeps some nights, and I couldn’t get that anywhere for months. A pharmacist told me that it wasn’t being made and it would be for at least 6 months. Augh! I have lived without it now for a year, and I’m doing okay, but your withdrawal sounds like it would be much, much worse.

    • No I don’t think it exists in other countries. It’s somewhat rare. If I even went down by half a dose for one night, I would be in trouble with seizures. I’ve tried this under a docs care in the past. If I have seizures, I lose my drivers license. The med. is an absolute must for me. I didn’t know mylanta could help one sleep. Glad to hear that you’re able to sleep without it now

  9. Crap! I’m dependent insulin, but there are multiple types I can use without any issues from switching between them.

    I’m with Brenda – can you find any available in other countries?
    Will your seizures and other epilepsy related issues return if you are off the meds for a bit? And is there anyone sympathetic at the insurance company who can help?

    • I don’t think the med exists in other countries, it’s somewhat rare. As far as existing off it and emphatic no. If I go down by half a dose for one day I’m in trouble and I don’t want to lose my drivers license. Pharmacies are doing all that they can do to get it.

  10. Oh hun, I’m sorry. What the is right. As others have indicated, can’t Canada reach out to other countries?

  11. Scary.
    Hard to imagine that with all the drug pushing that the pharmaceuticals do they would actually have a shortage of something that so many people need. Kind of ridiculous. I hope they get all sorted out quickly. I hope you continue to get the dosage you need.

  12. Oh noes! Fingers Xed that they get more.

  13. I thought you guys had like free meds and complete coverage… but I just want you to feel good all the time and never have a bad day as long as you live… is that too much to ask???

  14. Oh no! I really hope they can get some more in from somewhere. Honestly I haven’t been in that situation before, so I’m sorry I have no advice. Fingers crossed in 10 days time you can get some more. Or they can ship some in from another country if they do that. ❤️❤️

  15. Jeez, Zoe…I don’t know what to say, but I sure am thinking of you. xoxoxoxoxo

  16. I have experienced something like this before. One of my puffers was suddenly discontinued a number of years ago. It was a steroid puffer & changing steroids can take a couple weeks each way to put your immune system back to normal. There was no warning – one day it was available, the next day it wasn’t. Thankfully, there was a replacement puffer suggested & it did work well for me & I was able to handle the transition well. Another time a doctor “decided” the anti-anxiety med I was taking was old-fashioned & I should be changed to another one. I experienced a week of “hell” while my body made the transition (many, many panic attacks day & night). My poor body was so worn out from the panic attacks, I thought I might just die. I did eventually adjust to the new medication – but if a doctor even hints at making a change in any of my medications now – I panic!

  17. That’s horrible …Im so sorry.Have you tried online out of the country?

  18. I’ve experienced shortages with various steroid prescriptions, but I don’ depend on them nearly as much as you. I really hope that good news about this heads your way soon xxx

  19. Holy Shizola Huck! I’ve not ever had to deal with something like this. I’m so sorry. I hope they can get you the med super fast. Though it doesn’t sound like it. What is your doctor saying? Are they not as worried as you?

  20. I’m so sorry for this, I also need medication and it’s very frightening to think it may not be available . I don’t know about your country but in Australia we have a health minister, if I was brave enough???, I would contact someone in authority as I would think that there would be a number of people affected by taking away a clearly in your case helpful and VITAL medicine…..lol
    You’re in my thoughts and prayer
    Safe, gentle hugs Ziggy

  21. I’m sorry to hear this, and I hope you’re okay. I uncovered this, so I hope it helps.
    http://www.businesswire.com/news/home/20130812005230/en/ONFI%C2%AE-clobazam-CIV-Scored-Tablets-Oral-Suspension
    All signs point to this being available in the US since 03 Jan 2012, so perhaps you could get some of it. The retail name is ONFI, and it’s by a company called Lundbeck.

  22. Bloody hell – I can’t believe this! Please keep us posted and I will keep my fingers crossed.

  23. Count me in the minority, but… *sigh*

    We need personalized medicine. Personalized medicine needs to happen.

    Your story reminds me a lot of what my father has told me regarding his situation– a drug that worked well for him is no longer available because some people in the treatment group died or suffered, allergy reactions, etc. I haven’t faced that so much, but I did have Stevens-Johnson Syndrome on one particular drug.

  24. Oh my gosh! That’s horrible. Is there anyway you could drive to the US and get some? It sounds like it would be worth it. If the US has any . . .

  25. Cat

    OMG I’m afraid I would probably panic

  26. please look at your email…hopefully it’s good news for you ;-)

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