Fyi: What to do when no meds

[Hosea]

When by no fault of your own, you find your self with no meds over an extended
period of time, what are your options? Earthquakes, floods, lost baggage, pick a
scenario. One week with no chance of acquiring your meds. What does one do to survive safe and sound?

[skillefer]

In case of naturaly disaster, I would go to the nearest emergency room with my ID and the most recent pill bottle....I don't throw mine out for at least 3-4 months. Also, I tend to refill my meds about a week before they run out so that there's some overlap.

[RobinN]

I would put an emergency call into the doctor that prescribed them.

[Ruth]

It would depend on the emergency. For instance, a tornado or hurricane can destroy the hospitals. Like the hurricane in Louisiana, the hospitals were shut down. That is the most worst case scenario I can think of. I would leave and go to where there are hospitals.

I have a Medic Alert bracelet that tells them all of the medicines I take and who my doctors are. Being without my medicines, that would be the worst case scenario. Then I would go into seizures.

[Crazy Monkey]

Not the same as a natural disaster, But I have found myself with no meds.

I was on holiday visiting the USA a couple of years ago, I was in Oregon/Washington doing a roadtrip, I always take plenty of meds away with me, more then enough. It wasn't until Sunday night in the middle of nowhere that I discovered that ALL of my meds were gone.

I cannot think of anyway that was possible as they were not all kept in the same backpack, I can only assume that they were stolen that morning from my motel room when we went out for breakfast. As everything else that I kept in the first aid kits etc was still there. I had no evidence so I couldn't report it, also by the evening I was 500 miles away from the motel.

There was no local doctors or pharmacy, so we had to find the closest hospital which was 50+ miles away from our hotel that night. Once there, I went into A+E and spilled the story about the missing meds. I had a hard time convincing the doctors that I needed the meds, they weren't just going to let me have a prescription for them, I might have been a con artist. I had nothing on me to say that I am epileptic and I use xxxxxx medication.

In the end they relented and handed me a prescription, after doing a full medical, they pointed out that my blood pressure was high and I pointed out to them about the fact that I have no medication, I still have over 2 weeks left of my trip and they are digging their heels in about handing me a script, I said "don't you think that this would increase your blood pressure?"

Then next challenge, finding a pharmacy open in a sleepy town, late on a Sunday night, I did manage to find one, but they handed me Lamotrigine instead of Lamictal, which was unfortunate but at least I had some meds.

The whole scenario was very costly so thank god for travel insurance.

But this opened a new subject for me, why in the UK do we not have medical cards that states conditions and medication??? as this could have been so much easier.

[Hosea]

Going to ER is not an option folks. You are without meds for one week. What should you do? 911 is knock-out. Meds no where in sight. Now what? Any foods that might help? Tree bark, roots of plant, mint, herbs?

[RobinN]

Your brain has been altered by chemicals that are much stronger than the healing properties of food. Nutritional changes work over time, they are certainly not a quick fix. Just like a junkie would suffer withdrawals, so to would the person that does not have access to pharmaceuticals.

My son decided to forgo getting an appt to get his prescription of Celexa, Paxil, (can't remember) he went through terrible withdrawal symptoms, non of which included seizures.

Is this just a hypothetical question, or is this something you are preparing for?

[Ruth]

Hosea, if I did not have my medications I would seize until I died. I have had STATUS EPILEPTICUS two times in the past. If, I had control over my seizures, I would not need any medications. I would try that. Positive thinking is always good for us anyway.

[Ruth]

Hosea, you brought up the topic. Give us ways YOU could go without your medications.

[Hosea]

This is only a hypothetical question Robin. Yet, if for some reason you have no access to your meds. How does one survive without meds. As Boy Scouts we were taught how to survive in the wilderness.Find shelter, gather food, start a fire and on. No one has taught me how to survive without meds. Hope that day/night never comes. If confronted with such dire straights, I wish to be prepared. Me, I'm unable to "go without". Do I just hope
& pray?

[Dutch mom]

Without meds for one week?

Fasting (or eating 70-90% fats) could help many (60-75%!) to establish adequate ketosis and have a week without szs or significant seizure reduction. That's what happend many centuries ago when E patients were fasting for religious reasons. This is the (historical proven) principle the ketogenic diet is based on.

But I agree with Robin; 'cold turkey' of meds (several anti-epileptic drugs and especially the benzodiazepines) would give a high risk of serious withdrawl efects, including increasing of szs.

If my son still would be on anti-epileptic drugs, Í do know many other parents of kids using several anti-epileptic drugs, so I would try to get in contact with them, hoping they would have enough in store to spare some for my boy.

[Hosea]

cold turkey means that you have chosen to stop taking your meds. I'm talking about, by no
chose of your own, you are without meds for a week. Say a boat wreck, only passengers
make it to shore. Everything else(2 weeks meds) sinks. Help is one week a way.- Eat 70-90% fats, okay, that's good to know. Eat lots of fatty foods or fast. Thanks for the info
I hope I made myself clear. No cold turkey, but force separation from meds for 1 week. How does one with epilepsy survive.

[seizures4ever]

I found myself out of town (300 miles away from home) and realized that I forgot my meds. Thankfully, my pharmacy called the pharmacy where I was staying (chain of stores) and I was able to purchase a few for the week.

Also, the doctor on-call has helped me when I found myself in a pinch over the weekend (no refills remaining). It ticked her off, but she called in the refill.

One night, my pharmacy had closed and I needed one of my meds. I went to a 24 hr grocery store pharmacy and showed him my empty bottle and my I.D. He was very kind and actually gave me enough for that night and the next morning dose.

There are also the government programs and pharmaceutical companies that provide aide to people who need it.

-Julie

[epileric]

cold turkey means that you have chosen to stop taking your meds. I'm talking about, by no
chose of your own, you are without meds for a week. Say a boat wreck, only passengers
make it to shore.

I've always interpereted "cold turky" as suddenly without tapering off so I'd assumed that's what was meant. It doesn't really matter though because
Regardless of whether someone suddenly stops taking their meds by choice or not, the result is going to be the same. There will be withdrawal symptoms. Also any sort of new treatment, be it a new herb, diet or even a new medicine will take a while before it starts to work.

[misseschris]

one really cool hing about national pharmacy chains is that they are linked and networked. If you have refills left that information along with the prescribing doctors information address telephine number etc...So maybe try going to a pharmacy with a national or in some case international base.

[Dutch mom]

Also any sort of new treatment, be it a new herb, diet or even a new medicine will take a while before it starts to work.

This is not true as it comes to the ketogenic diet. Adequate ketosis for possible seizure reduction is established within 3 days of total fasting. Not all patients will have a fast result when they're fasting but some will. Fact is: about 50% of the kids who have good results on the ketogenic diet, did have positive effect in week one. My son did, his 100s of seizures each day did reduce by 90% in his first week on the diet, while he was still in the clinic for initiating the diet. Ketosis wasn't even optimal by then. I know many kids who had amazing effects in the first two weeks but it isn't alway a permanent effect. The ketogenic diet (or fasting) is not effective for all patients with epilepsy; from all patients (mostly kids) who do try the diet, about 1/3 is seizure free and about 1/3 has > 50% seizure reduction. So that's why I'm convinced fasting could -theoreticly- help many -not all- patients for 1-2 weeks.

Eat 70-90% fats, okay, that's good to know. Eat lots of fatty foods or fast. Thanks for the info

Seems simple, but it isn't. Saying 70-90% fats, I do mean only fats. So you can't live on 'fat' french fries or burgers, those have far too many carbs. This diet works by restriction of carbs in a way that makes Atkins peanuts. By the way, doing the Atkins diet for 1-2 weeks might help a bunch of patients too.

I've always interpereted "cold turky" as suddenly without tapering off so I'd assumed that's what was meant.

Yes, by 'cold turkey' I meant sudden withdrawl, regardless of by own choice or forced by sudden circumstances.
The withdrawl effects of some -not all- anti-epileptic drugs would be a big disturbing factor for fasting and keto diet to be a solution.

[Ruth]

Thank you for your suggestions for the ketogenic diet. However, if you do not have your medicines and have to go "cold turkey," would the ketogenic diet be available?

Would we have a choice as to what foods would be available. In the event of a catasrophe, I do not think so. Did they have that option with the hurricane in Louisiana? What types of food were available to them? I do not know.

[Hosea]

once again my CWE family, "a catasrophe" has just occurred. All "national pharmacy chains"
have been shuttered. The goverment is not able to provide help. Picture yourself without your meds. Now, what shall you do to survive for a week? You are on your own. Now what?

[swimmy]

You are, IMO, answering the unanswerable. I do everything I can to avoid this situation (stash meds every place I will be), but if there's no avoiding the situation, as you state in your example, then there's no avoiding it.
Don't freak out, eat well and drink things high in sodium...and stay around soft places. Keep people around you who won't freak out WHEN you seize. I'm not sure what answer you're looking for, but if it's unavoidable, then there is no answer.

[Hosea]

So that's the answer. Not the HOPE I was looking for. Well time for breakfeast and meds.
Thanks Swimmy. Hope all is going swimmingly and steady your way. I found a few actions
to take, if the unthinkable shall occurred.