 |
| Author | Post |
|---|
cwylie1
Member in Phase 2
|
Posted: Sat Jun 28th, 2008 04:32 |
|
Hello All,
Well, another week has gone by. My third week and the first on mino 25. I seem to be one who herxes in the first 24 hr. Week started with incredible fatigue, but like other, wierd little quirky herxes I've been having, it only lasted a short time.
Herxing - The brain fog and upper respiratory sxs ended early to mid week to be replaced with some interesting skin/neuro sxs. Sharp pains here and there, quick and then gone. Some uncomfortable stabbing pain in mid thigh, felt like a nerve, with concurrently connected similar pain below and rt. of the knee. Felt some skin crawling, itching and slight flushing feeling like taking a niacin tab but not as strong. See? I said wierd little herxes going on.
Work - Beginning to have some joint pain, weakness but overall nothing intolerable. Just thankful my brain was working. Today was ok for cognition except I really ran out of energy at the end of the day. My work days are from 10 - 6 which I think I need to adjust backwards to 9 or 8:30 to 4:30 or 5.
Midnight dosing - I need to get more sleep. I've been staying up too late to take the midnight Benicar as late as possible, then up for the 6 a.m. Benicar then another more hour of sleep and get to work. I think I'll try taking the midnight Benicar between 10-11 p.m. then get to bed earlier. Just need to ensure the 6 a.m. dose is timely.
How are the rest of you dealing with working and the MP and how are you getting that midnight dosing in w/o affecting your needed sleep?????
Inquiring mind(s) want to know!! 
Carol 
Last edited on Sat Jun 28th, 2008 04:32 by cwylie1
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
|
Michele MBK
Member in Phase 2
| Joined: | Fri Jan 4th, 2008 |
| Location: | Virginia USA |
| Posts: | 60 |
| Status: |
Offline
|
|
Posted: Sat Jun 28th, 2008 06:51 |
|
Hi Carol,
You've asked a great question! I'd also like to know how people can keep working through this fatigue!? I've strategically started MP during my summer break from teaching. It's good for the extra time available to sleep, but harder because of the weather. I've been wondering the answer to your question, too. I'm starting to surmise that when I'm working again, I'll just set the morning alarm appropriately to dosing to an earlier bed time and go back to sleep. I guess I'll need to have two alarms...one for medicine and one to get up. I certainly go right back to sleep now...but don't force myself up everyday, just when I have a morning appointment....like tomorrow! Yikes! I'm off to bed now!
Carol, quick question for you...are there any good indoor activity places in Peoria for kids and an MP adult? Can you send me a website link to the place if you know it? We'll be driving through there in a week. Normally we let the boys run in parks...but I'm trying to strategically find indoor locations along our route.
I'm looking forward to more people who might share strategies on working, dosing and managing MP!
Michele
____________________
RA 125D30 D2516 Ambien Elavil Vicodin low lux home NoIRS cover up Ph1May08
|
John McDonald
Administrator
|
Posted: Sat Jun 28th, 2008 08:23 |
|
midnight Benicar: For some reason I find that I wake up for a momemt around 2A. So I adjust all of my day's benicar dosing to accomdate this hour, that is, I dose at 8A, 2P, 8P and then whenever I wake up, usually between 2 & 3A, to take that dose. For a while it shifted to 3A so I moved all my doses to accomodate. Once in a very great while I sleep through the 2A dose but those times seem to be when I am herxing the least, and least need that dose.
Lately I have been waking at 3:30A to unpleasant dreams and bad feelings, self deprecation and such. I take the Benicar, a little late, and then wake normally a few hours later to very pleasant dreams. My wife typically sleeps right through that wee hour's dose. There isn't any set way to do this. You somehow have to find a way that works for you, but you will.
____________________
RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
|
cwylie1
Member in Phase 2
|
Posted: Sat Jun 28th, 2008 22:06 |
|
Hello Elisabeth and John,
I was going to entitle this "Herxing, and Dosing and Work... Oh My!!!! (Any chance you could get that changed for me John?? I think it would attract more interest as a topic, tx.  )
Elisabeth, I'll call around for some good ideas for kids and adults w/ MP. I'll let you know in a PM.
John, sorry to hear you're up at 3 a.m. with bad dreams. My husband (on 50 mino) had some bad dreams last night, too. So far, for me, since a week before starting the MP, my sleep drastically improved. Perhaps d/t cutting out all D foods (ok, I still had potato chips a few times ;p I'll be starting 50 mino. tonight so we'll see how that plays out.
Before starting the MP, I used to wake up a few to several times a night, especially at 2-3 a. and was beginning to have trouble going back to sleep. Arrrgggghhhh!! So having several nights, like almost a month of sleeping through the night, for me, is a first in my adult like (RLS). Good luck with the 2-3am dosing. I'm always afraid I'll sleep through a dosing so I feel the need to take it before I go to bed for the night.
I think doing a 6 a, 12 noon, 6 p then 10:30 might work for me. The last one would still be within the 8 hr. limit of Benecar. I really need to be getting up at 6 to try to change my work sched. to 8-4:30. Today, I got to work at 8:30 and got LOTS of organizing files done plus saw two pts and got their plans of care completes (ie: paperwork!!!!) Not bad for a Saturday. My ADDness seems to be waning. How wonderful is that!!!!
I am fortunate to be only 5 mi. from work both in terms of reduced drive time in the sun and a shorter day (less gas$$ too) I have had jobs where I drove 40-70min. 1 way.
Take care and have a nice weekend,
Carol
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
|
John McDonald
Administrator
|
Posted: Sun Jun 29th, 2008 06:06 |
|
| Carol, slightly off topic but us workers can have trouble minding our diet. Especially when we travel. I have absolutely eliminated the obvious D-laden foods such as fish, dark mushrooms and egg yolks and if I buy anything made from milk I read the label very carefully, twice. But I have never avoided meats, meat fats, bacon, potato chips or say avocado based on the SUSPICION that they MIGHT have contained vitamin D. I know there are some folk here that take great care to not only eliminate known D, but also to eliminate foods that could possibly maybe on Fridays have vitamin D. And I applaud them. I might wish that they were traveling with me and choosing my food. But that is way too much effort to be interesting for me. Rather, I just check my serum 25D once in a while to make sure that I am not slipping some D in without knowing it. Moreover, if I am eating out in some strange city or country and my pot roast has a couple of mushrooms in it, I eat one and push the other aside. I see it as a moderation or seldom kind of thing. If the free hotel breakfast doesn't have anything I can eat except scrambled eggs, and that is rare but it happens, then I have a scoop of scrambled eggs. My point is that at least in my case I seem to tolerate the suspicious foods very well, and even bites of the known bad food if consumed seldomly. Naturally your experience may vary. But I offer this as a way perhaps to make the MP a bit more workable. I don't think that avoiding potato chips is a core principle of the MP. Avoiding salmon or mackeral may be. Last edited on Sun Jun 29th, 2008 06:06 by John McDonald
____________________
RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
|
k
Member in Phase 3
| Joined: | Fri Aug 10th, 2007 |
| Location: | Australia |
| Posts: | 90 |
| Status: |
Offline
|
|
Posted: Sun Jun 29th, 2008 11:25 |
|
R.e. midnight dosing
Thought I might as well add my personal experience to the mix...
I used to do the 8 hour thing overnight. But I found that it was really hard to get going in the morning. So I switched to continuing to take Benicar every 6 hours and this works better for me - I don't feel as bad when I get up int he morning and it doesn't take as long to get going.
I am lucky in that I don't have trouble sleeping - my alarm goes off, I take the Benicar and fall back asleep without a problem (I am also single and so I'm not going to wake anyone else up by doing this). Occasionally though, I find that I've slept through my alarm as when I get up in the morning the Benicar is still in my pill box.
regards, k
____________________
ME/CFS severe menorrhagia & dysmenorrhoea anxiety depression paxil hydralazine Ph1Oct07 25D50Jul07 25D23Oct07 25D13Jan08 NoIRs cover-up low lux home lite exp r/t to work Ph2Feb08
|
texlaura
Member in Phase 2
| Joined: | Sat Mar 29th, 2008 |
| Location: | Missouri USA |
| Posts: | 12 |
| Status: |
Offline
|
|
Posted: Sun Jun 29th, 2008 18:42 |
|
RE: unpleasant dreams I've had them almost every night since starting MP in mid-April. I'm still able to get good rest, but emotionally they're just hard on me. Something new I'm doing is helping though! Taking benicar more frequently, like every 4-5 hours instead of every 6, including right through the night. I just set an alarm (I use my cell phone in the nearby bathroom, with a very pleasant tone), and can get right back to sleep.
I used to think that not being interrupted would be the most important thing, hence I was stretching my night-time doses out to the full 6 hrs (even if I'd had a sunny day at work and was doing the daytime doses every 4). Now I see the benefit of the more frequent doses, and the waking up is less problematic than the dreams.
As a momma with 2 kids on the MP I have an added responsibility right through the night -- waking up my boys for their doses. We get through it OK. On most nights we're on the same schedule, but not always. I look at it this way -- getting up to help with benicar is much easier and quicker than middle of the night bottles, breastfeedings and diapers used to be! We all just love the feeling of crawling right back into bed, covering up, and knowing we don't have to get up to face the day yet. Plus it gets the trips to the bathroom out of the way.
Last edited on Sun Jun 29th, 2008 18:43 by texlaura
____________________
Lyme coinfections '02, food allergies '95, hypothyroid, Schwannoma tumor removed '04 (benign), 125D26 & 25D37,4/08 Ph1Apr08 Ph2Jly08 cytomel tylenol zyrtec benadryl NoIRs lite exp r/t work 25D24,7/08
|
Carricol
Member in Phase 2
|
Posted: Mon Jun 30th, 2008 04:02 |
|
| I have been taking Benicar every four hours since Feb. I must set an alarm. Sometimes I have trouble getting to sleep. Other times I sleep 12 hours.
____________________
Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
|
Adrianne
Member in Phase 3
|
Posted: Mon Jun 30th, 2008 04:53 |
|
| I too have really unpleasant dreams! They can happen at any time but occur almost all of the time if I go back to sleep after taking my early morning Benicar. Many of my dreams are also hard on me emotionally. Hard to start a new day feeling so unsettled!
____________________
CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
|
Adrianne
Member in Phase 3
|
Posted: Wed Jul 2nd, 2008 18:44 |
|
| Thank you John for sharing about your Benicar dosing. I ALWAYS wake up between 2 and 3 AM. So, for the past 3 nights I took my Benicar at that time, instead of having to wake up again when my early morning alarm was set to go off. I end up taking more Benicar than my my usual q8h, which is a good thing. I've been getting more sleep and don't have to try to go back to sleep in the early morning and then have those very unsettling dreams!
____________________
CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
|
John McDonald
Administrator
|
Posted: Wed Jul 2nd, 2008 19:00 |
|
Adrianne - you are very welcome. Why not adjust your dosing to 2:30A, 10:30A, and 6:30P; 3 doses 8 hours apart but falling on your natural wee hour's waking time? Then again, maybe you needed the extra Benicar to avoid the dreams but experimenting should tell.
I prefer to dose 4 times each day so that I get that 2 hour margin in case I go out and forget my Benicar or in case I sleep a little longer for the wee hours dose. In that case your dosing would be adjusted to your natural waking hour of 2A-3A so your 4 doses would be 2:30A, 8:30A, 2:30P, and 8:30P.
-john
____________________
RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
|
Adrianne
Member in Phase 3
|
Posted: Wed Jul 2nd, 2008 20:59 |
|
| Thanks again, John! I will be experimenting to see what works best for me. Isn't it amazing how such a small change can sometimes make such a big difference?
____________________
CFS Ph1Jan07 ModPh2Apr07 Ph2Aug07 Ph3Feb08 L-tryptophan benadryl famotodine 25D9.1(Mar07) NoIRs limited outings covered
|
cwylie1
Member in Phase 2
|
Posted: Sat Jul 5th, 2008 04:35 |
|
Hello everyone,
Thanks for the good discussion. Looks like there are many ways to get the required dosing accomplished. That's good to hear.
John, thanks for the perspective on foods. I know I can be too rigid at times and fearful, so keeping with the motto of 'moderation in all things' is a good one for me to remember.
We just got back from the U.S. 4th of July fireworks. Very nice.
Hope you all have a wonderful weekend and may your herxes be tolerable!
Carol
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1009 |
| Status: |
Online
|
|
Posted: Sat Jul 5th, 2008 20:27 |
|
Okay, I've read the food section and I've read nothing about not eating potato chips. Help me out here John. I know they are a carb (and I usually try to stick to low glycemic foods) and I only recently started eating potato chips (I still limit my carbs, but I'm now near the bottom of my weight class and feel like I need to leave a little leeway in case one of the future abx results in weight loss); also, I need some sort of snack other than fruit and nuts. And the salt is a plus. I know this isn't on topic, but what am I missing about this.
Thanks, Claire
P.S. I have yet to find any sort of night-time dosing schedule or even taking Benicar for an 8 hour dose at night to be helpful, as my sleep schedule keeps revolving around the clock...very slowly, often shifting into a split sleep schedule. I think we just have to do the best that we can with what is currently happening to us and avoid thinking that there might be a perfect schedule out there. The word on the MP is FLEXIBILITY, FLEXIBILITY, FLEXIBILITY.
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
|
John McDonald
Administrator
|
Posted: Sat Jul 5th, 2008 20:57 |
|
Claire, I think my point is eat and live as makes sense to you within the core principles of the MP. The obvious D foods have to go. If you are really sick and struggling and can't get your D down then the not so obvious D foods may be candidates to toss. Pure sugar tends to feed the microbes really well so it is not a good idea, but a bit of a chocolate bar might be exactly the prescription despite the sugar if you need a bit of comfort or if you want to celebrate something. It is a do it in moderation kind of thing. Carbs are converted quickly to sugar so some people avoid them carefully but if you are underweight you have to eat something. If a particular food makes you ill don't eat it. That sensitivity may pass in time. Otherwise, observe the core principles and do what you need to do. I reason that if your D is low and/or is dropping and if you are herxing and healing then you are getting something right. If that isn't happening check your diet and your non-meds again.
This depends alot on how sick we are. I'm pretty healthy these days and I can eat more and do more, and enjoy more light than I could on my early days on the MP. Your body will tell you how rigorous you need to be.
Regards, -john
____________________
RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
|
coolbeans
Health Professional
| Joined: | Tue Jan 31st, 2006 |
| Location: | USA |
| Posts: | 106 |
| Status: |
Offline
|
|
Posted: Thu Jul 10th, 2008 10:20 |
|
Potato chips? Besides the carbs in chips and such, if you are trying to lower a stubborn D level, read labels to avoid the oils high in D used to fry chips. Sunflower oil comes immediately to mind.
Doctor search? Don't forget any doctor is capable of writting your scripts. I searched for 15 months until I went to my OB/GYN and asked him.
Jan
____________________
RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D4
|
Carricol
Member in Phase 2
|
Posted: Fri Jul 11th, 2008 01:49 |
|
| If they contain corn or soybean oil there is another problem. Most corn and soybean products are now Genetically Modified (GM). No one knows what the long term impact is of consuming GM products. Best snack is probably MacaDamia Nuts.
____________________
Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
|
eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1009 |
| Status: |
Online
|
|
Posted: Fri Jul 11th, 2008 02:05 |
|
Had to laugh in a sad sort of way about the sunflower oil. I buy Utz potato chips and they use cottonseed oil (not that that's great), and the other day I noticed they had Utz Natural. The difference? Utz Natural has sunflower oil.
I've noticed that has become a trend with pre-prepared health foods. There are all sorts of pre-made soups that I used to be able to buy but can't now.
Reminder: always check the label!
____________________
CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
|
Carricol
Member in Phase 2
|
Posted: Fri Jul 11th, 2008 02:12 |
|
| Most Cottonseed Oil is also GM. I only use two oils. I use Coconut Oil for all cooking and Olive oil for other-non-cooking. MacaDamia Oil is also good for non-cooking.
____________________
Sarcoidosis 125D38 Ph1 Nov07, fluoxitine Lithium Synthroid 5-HTP tyrosine, NOIRs lite exp r/t commute cover up, Ph2 Jan08 25D9 Feb08
|
cwylie1
Member in Phase 2
|
Posted: Sat Jul 12th, 2008 16:29 |
|
Hello Carricol and all,
We, too, only use coconut and olive oil at home for cooking. We do use organic, salted butter also. I never thought about the oils on the potato chips I was eating being a V-D issue. Lately (pre-MP)we were only eaten natural types with only potatoes, peanut oil (and perhaps safflower) and sea salt as ingredients, but perhaps the oils were a problem that I didn't realize. We have been trying our best to eat healthfully, but prior to the MP weren't aware of the V-D problem.
Thanks for the info on oils.
Carol
____________________
Migraines, RLS, MCS, ADD, tinitus, fatigue, tachycardia, Brain fog, mild HTN, joint pain, Ph1-6/9/08; 25-D 47 0n 5/08,43 on 7/28/08 and 36 on 9/6/08. 1,25D-66 on 5/02/08 and 55 on 9/6/08; Covered up, r/t to work, NoIRs. low lites.
|
Current time is 07:02 | Page: 1 2 3 4   |
|
|
|
|
