death is the answer?

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Wayne
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Post by Wayne »

bethf wrote:wow, that's already two others with occasional wierd swallow things. I wonder how common it is in the non-RLS population. I've always had trouble swallowing pills


It could be a minor acid reflux or maybe GERD. I don't have trouble swallowing pills but sometimes they get stuck in my throat, not going all the way down and it causes a discomforting, sometimes painful, acid reflux which can make me gag the longer it stays stuck. This also happens when just eating, although some types of foods seem to trigger it more often.

There must be some coating on the pill or maybe it's that the pills start to flake and dissolve immediately before it makes it all the way down. Because some pills I can swallow regardless of size and others that are tiny will cause an instant reflux. I crush the ones (that I can) that cause reflux or try to get it in a liquid form.

The GERD is most likely another long term side effect of the chemo I'm told. Years ago I had a throat dilation because it was becoming so frequent. It did help. Nowadays I have to remember to chew thoroughly and take small sips of water often although sometimes I'll forget or am in a hurry and will be reminded with a painful reflux.

badnights
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Post by badnights »

My GP determined I didn't have acid reflux last year when I was getting the downing-in-my-spit thing evaluated; I forget how, maybe just asking me questions. Also I had a barium swallow test and things were normal.

I had to look up GERD (gastroesophageal reflux disease :) ). I have heard of people having issues with certain pills but not others irrespective of size, so you're not alone there. I knew a guy who had his esophagus dilated, or he was going to but it ended up being more complicated, because when they got in there they found that his esophagus diameter was less than a centimeter or something ridiculous like that. Since he was a little kid he took a long, long time to swallow, and sometimes food would back up right back to his mouth and stimulate his gag reflex. Freaky. But no acid reflux. Anyway. That was irrelevant.

Bethany
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Re: death is the answer?

Post by Bethany »

I, too, have many of the feelings described by Beth. I also have COPD severe(chronic obstructive pulmonary disease). The doctors love to try to treat COPD, but when it comes to RLS they turn the other way because only a very few know anything about it (although they say they do.) I wish the doctors would receive more literature an about RLS and, more importantly, READ it. What else can I do?

ViewsAskew
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Re: death is the answer?

Post by ViewsAskew »

I didn't think about this when this thread was started. I don't have the swallow issue Beth described, but have a different one! I get esophageal spasms. When it happens, I feel like I have a lump in my throat, I often have a hard time swallowing things, things hurt like blazes as they go down, and it feels like a vice grip is squeezing my breast bone! They say women are more likely to have them and they can be associated with stress.

My grandmother, in her 70's, had to had physical therapy to teach her how to swallow correctly. She suffered from horrendous WED (RLS). I doubt this is all connected, but it does make you wonder sometimes when a bunch of us have problems in the same obscure area!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: death is the answer?

Post by badnights »

Here's a tidbit I found out when I first learned about RLS: the basal ganglia (the part of the brain implicated in RLS controls movement and swallowing. Wierd, huh?

Bethany, it's too bad you don't have an RLS-knowledgeable doctor! It makes such a difference. But at least, can the one you have learn? I have brought papers and information to my current doctor, and though she doesn't read them, she allows me to summarize them!
Beth - Wishing you a restful sleep tonight
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Polar Bear
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Re: death is the answer?

Post by Polar Bear »

Strangely I sometimes have difficulty swallowing... its usually just the first couple of mouthfuls which stick and are quite painful to get down.
After that it's ok. And boiled rice is the worst culprit. Fried rice is ok.
But if it is because boiled rice is dry, then what about bread or potato which are ok.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: death is the answer?

Post by badnights »

I have another swallow thing, besides choking in my sleep. I suffered from it for years, then it gradually went away. It felt like my whole throat was tightening up, that the muscles were constricting, and it was quite painful. If I tried really hard, I could relax them a little tiny bit by thinking about it. I used to wonder if it was a stress thing, because it was always gone after I had slept. I knew one of the triggers was coffee - not caffeine because I could drink tea or cola, and not hot liquids because I could drink soup or tea. And I accidentally discovered that putting milk in the coffee helped (I used to drink it black).

I'm not sure when that problem went away or why - perhaps after I stopped coffee for a while when I first got the worsened WED? - but it rarely happens now, even if I drink coffee.
Beth - Wishing you a restful sleep tonight
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majoraward
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Re: death is the answer?

Post by majoraward »

I have swallowing problems too sometimes. Sometimes it is almost a panic because I swear I have forgotten how to swallow. Then I do of course. It has to be the drugs. I have seen side effects on many of these drugs that mention problems like that. Pretty weird though.

Holy crap! You know I am new on this forum and just starting to get to look at other posts and I see the first post for this thread that is a couple of years old and I could have written that first post many times over the years from this thing that inflicts us. I'm okay at the moment but 3 days of no sleep and I will be in that place again. Now I have become really paranoid about that happening again because the doctor(s) admitted that they have tried everything and here I am on Mirapex, Lyrica, and Oyxcodone and any of them (probably Mirapex) could stop working or make it worse any day.

Then there is the thing that no one around me really understands. A couple of guys at work, I think they do pretty much understand which is weird. I guess they see me doing incredible things at work, and quickly, and then I slowly fall into the abyss of thinking incorrectly, making mistakes, and slowing down. Must be why they know how it effects me. I've been married 37 years and my wife has been through this whole thing with me but when I think she understands, she doesn't. I guess she has trouble thinking of me this way. For example she will say something like, "I told you that 3 times before." sort of pissed off. I'm like don't you realize I have been up for such and such days without sleep, my short term memory is shot (although it comes back when sleep returns). I'm sick of explaining it to her and shouldn't have to but she remembers me as healthy and I am judged by her through those terms much of the time. She gets it sometimes...if she can't fathom what is happening to me how can anyone else? Retorical question - lol - I'm just blabbering.

badnights
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Re: death is the answer?

Post by badnights »

The worst thing about this disease - the second-worst I guess, the worst being the lack of sleep - is that people think there's nothing wrong with you. If I told people I had inoperable cancer, they would probably get it. (Inoperable because I have seen people assume a post-operative cancer survivor was fine, just because she was back to work, even though she had horrid ongoing issues as a result of losing most of her large intestine). With WED, and many other so-called invisible diseases, we don't look "sick". Without that immediate, in-your-face visual cue, people forget that we're suffering and disabled. It's a normal response I think, not malicious, and for our friends and acquaintances to overcome it (assuming they have the knowledge of our condition) requires an effort, a concentrated attention to the issue, that many people don't have the energy for.

You're lucky if even one guy at work notices the difference between before and now. At least it's validation, of sorts. For me, my boss and a number of co-workers moved away, plus I changed my job function, right at the time my disease flared up. So the new boss had nothing to judge me by, to see that I had slipped so badly in performance. He (perhaps) just thought I was a useless knob.

Whenever you're given the impression that they've tried everything, remember they haven't! Not only are there an almost infinite combination of drugs, one of which might work, but your body changes and something that didn't work in the past might work now. On top of that, I am convinced that if more research was funded, a real understanding of the disease would ensue and effective treatments could then be developed. It's happened before, it can happen again. That's why awareness is so important.
Beth - Wishing you a restful sleep tonight
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majoraward
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Re: death is the answer?

Post by majoraward »

Yeah, your job situation is not good. The last job I had I did not tell them about my condition and they probably wondered what was going on because I missed more work than was usual. I was job shopping at the time (contract engineer going from one job to another) and the previous job like that I did mention it. That job I should not have mentioned it because if you were not in perfect health they didn't really want you. They kept laying me off and bringing me back and finally when they got rid of me the last time I couldn't find a job and went on unemployment. The company said I had quit! I had to file an appeal to get my unemployment money. Ended up going to appeals court via the telephone conference call (really strange). Anyway I won, the judge saw right through those people. Trying to take advantage of me because I wasn't well. Incredible. I think it usually is better to let a company know you are not well (after you know that can't let you go) but not always, and contracting they can always let you go. Where I am now it is a direct position at a large company and it would be very hard for them to get rid of me.

I woke up and 2:45 am and I can't stop moving. I can barely sit here and type but obviously the Mirapex is not working while the Lyrica and Oxycodone are working some or I wouldn't be able to type, or sit for that matter. I'm so sick of this it is an appropriate thread to be in at the moment. I am a full grown man and I have tears in my eyes. This is just constant turmoil in my life. Why in the hell doesn't this medicine work all the time? It has to be some other factor. I'm thinking what is different, what could be the cause? Stupid little things come to mind like my wife and her visiting friend went out for high tea (yeah they have it in the USA lol) and brought back a bunch of goodies. Could they have caused it? I rather doubt it but the point is I don't know and nobody else knows for sure.

I think sometimes I should keep a journal of everything I do and then maybe I could go back over it and find out what is different, what changes. Stupid idea because if I were 100% well and not sick then I might be able to do it (if someone paid me) but it is not going to happen with the huge mood swings and being well (mostly) one day and having everything turn upside down as now. Half the time I forget to take my pills on time - lol - so I think I can become a research scientist too? Besides the drugs should be strong enough to work through little changes one makes during the day.

I have discovered a few strange things over the years about what I ingest though. The sweetner equal (aspertame) will totally nullify ALL the drugs I take for RLS/WED. This is not just some weird idea I have it has been proven so many times over the years that I avoid it at all cost. I don't know how many times I have reverted back to total movement insanity and then looked around for the reason why and my wife will say something like, "They made the cake with equal so it would be okay for (so-and-so) to eat cause they are on a diet." That is why I would think about the high tea goodies, who knows what ingredients they used.

Is death the answer? Probably, but I would prefer a natural cause. My first doctor was suppose to be so smart yet he didn't believe I could be up for a week or longer at a time. He believed the old wives tale that you needed sleep or after 3 days you would die - lol. Sometimes I wish that were true then it would be a natural way to go - the poor guy died from lack of sleep - lol. I saw a show on TV awhile back that showed a guy who hadn't slept in over a year, they found out he had a genetic disease that had killed all his previous ancestors back several hundred years. He was a total mental case and not really aware of his surroundings, but very alive and he lasted several years before he died.

Polar Bear
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Re: death is the answer?

Post by Polar Bear »

With regard to medication -- I always say that my medications work very well, except when they don't !!

I believe artificial sweetener is known to be an aggravator of WED.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: death is the answer?

Post by ViewsAskew »

While many of us with 24/7 or most of the day symptoms find that they're there no matter what, most of us find that some things can aggravate them. You already mentioned wine - all alcohol bothers many of us.

But, over the years here, people have noted interesting things that make it worse. Sugar/carbs comes up relatively frequently. I have a friend with WED. He never has it if he doesn't eat sugary stuff. He's eliminated ALL sugar and he never gets it. I tried - didn't work. But, I do find that if I'm lightly medicated during the day and I eat sugar, I'll get symptoms within 20 minutes, every time. When I'm heavily medicated at night, I don't notice.

Other people have mentioned specific foods that they notice a problem with.

It's a pain, but keeping an "everything" diary is a good idea. Exercise, how you are feeling, foods ingested, beverages, supplements, etc. Note when, how much, how you felt, etc. Is it a cure-all? Not often! Can it help? Absolutely.

For what it's worth, I had a cinnamon roll for my lunch (not healthy, but it's a special day and i was splurging) and I've been winding my legs, stretching them, tightening them, etc. the whole time I've been typing.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

majoraward
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Re: death is the answer?

Post by majoraward »

ViewsAskew wrote:For what it's worth, I had a cinnamon roll for my lunch (not healthy, but it's a special day and i was splurging) and I've been winding my legs, stretching them, tightening them, etc. the whole time I've been typing.


I feel the same way about a Dirty Martini, sometimes it is worth the night of pacing and the day of exhaustion.

majoraward
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Re: death is the answer?

Post by majoraward »

Polar Bear wrote:With regard to medication -- I always say that my medications work very well, except when they don't !!

I believe artificial sweetener is known to be an aggravator of WED.


I believe WED is a known aggravator of me, mostly when the meds don't!

badnights
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Re: death is the answer?

Post by badnights »

WED is a known aggravator of me
:D :D :D
I am at work, I can't really respond :~(
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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