Retitled: Phase II, let it begin.

[ViewsAskew]

This time around, not sure why, but my mood seems BETTER with pramipexole. Saturday was my only methadone day - the following day was not a fun one. A raging headache (trigger point caused - and the opioids seem to trigger the trigger points). It wasn't until 2 or 3 AM that it finally went away.

In the past, I've felt pretty terrible about 12 to 24 hours after taking the pramipexole. It usually takes 2-3 days before I'm completely better. The more I take (such as 2-3 days in a row), the worse it gets. But, not this time. I've been more even keeled. Interesting.

But, one of the dreaded side effects is back. For about 10 months or so, I've been following the DASH diet - it started because my husband was following it. I gained some weight when I quit smoking, then more weight when I used pramipexole. Hurting my knee just made it all worse.

The DASH diet has been easy to follow and I've lost about 2 pounds a month - perfect because as long as I eat healthily, I won't put it back on. I don't mind tracking what I eat and limiting carbs (I can still have plenty) as long as it isn't onerous, I feel good doing it, and it's working. And it has been.

About a week ago, I slept on the couch because hubby was snoring. He doesn't get his new BiPAP machine and mask until this week. So, down to the couch I went. I woke up to see a dirty bowl sitting on the table by the couch. I thought. I remembered. Yep, sometime around 4 AM I woke up and all I could think of was food. I HAD to eat. I made myself eat fruit and cottage cheese...but I wasn't hungry.

Then then next night, I went downstairs, half asleep, and ate something. I do not remember what. Again, I had this compulsion that I MUST eat.

When I took pramipexole regularly, I had these feelings ALL day long. 20 times I would turn myself around and say no. But, the 21st, I had something in my mouth before I could stop myself. And, looking at the scale, I realize I've not lost any weight since I started using the pramipexole....and have gained 2 pounds.

Sigh. So, I've determined I'm going to try to keep using the pramipexole and really work hard to keep the food in check. If I cannot, after a few months, I'll rethink it. I do NOT want to regain the 20 pounds I lost! Besides, I'm only about 8-10 pounds from fitting into a whole storage container of clothing!

It's just rarely easy for us, it is?

[Joanie60]

I'm impressed that you had cottage cheese and fruit when you had no "filter"!!! I would have gone straight for the chocolate chips (with or without cookie/ice cream attached to them!). Gabapentin packed on a pound a day for eight straight days and I dumped that s*$@# faster than you can say Weight Watchers.

My doc wanted me to try Lyrica and I watched every bite that went in my mouth like a hawk. And managed to not gain weight. But had weird dreams, chest pain, and shortness of breath, so that one got dumped faster than you can say Albuterol.

I am so sorry that you are fighting this Ann...just not fair sometimes. Why can't at least ONE of the WED meds have the side effect of weight loss???? Appetite loss????

Hang in there~a whole "new" wardrobe is quite an incentive if you can take it one day at a time!! We are all rooting for you

Joanie

[ViewsAskew]

Tonight I ran into one of the most hated pramipexole side effects - inability to orgasm. Our intimate lives can be extraordinarily difficult with WED. There are SO many things that get in the way of having cuddle time, sex, and intimacy. Including medications.

I'd forgotten just how freakin' frustrating this side effect is. To be, metaphorically, 1/64th of a millimeter from orgasm and not to be able to get there for 5, 10, 15 minutes is SO frustrating. You try to let go, give in, whatever...but, no.

Lesson learned - plan sex and do NOT take pramipexole on those nights. Or maybe plan sex for the time of day PRIOR to taking drugs and see if that works. But, never, never, never have sex AFTER taking pramipexole.

[ViewsAskew]

Joanie, I, too, was impressed I had fruit and cottage cheese. I remember just willing myself to eat something that wasn't chocolate, cake, candy, etc. The second night? I think it might have been ice cream.

I've done relatively well today and yesterday. One of the keys, for me, is to make sure I get my servings of protein and veggies early in the day. Then, when I have these binge moments, if I can make myself choose from what is available to me on my DASH worksheet, I'm more likely to "accept" choosing a carb or a fruit. I'm not so likely to ever want to pick a veggie. Or a protein.

Tonight I have 4 Jolly Rancher candies on my desk. I told myself that these are here in case I feel some need to have something. I've had one so far.

[badnights]

What a way to live, having to accept something screwing with your mind like that, taking over like an alien in your head. It's an appalling choice; appalling that the alien is actually better than unchecked WED. I crave a future when health will be part of life for everyone.

[Polar Bear]

Yep, I'm taking ropinerole (similar to pramipexole) and during the nights I eat endlessly, have put on 14 lbs over the last year or so.
My eating during the night is embarrassingly greedy, no problem during the day.... well, relatively speaking. But during the night it was anything at all, crunchy cornflakes, cookies, bread with loads of butter and marmite.... there were no brakes on the 'eating engine' at all.... and no boundaries. Before you know it there's another 7 lbs on.
To have a cookie can mean the entire packet.
During the day I don't even eat cookies.

More recently, about 2 weeks, I've tried to make myself go back to bed and read, and to only eat a yoghurt or a piece of fruit whilst up, and no further weight has been gained.

I am appalled at my nocturnal eating behaviour.

"""To be, metaphorically, 1/64th of a millimeter from orgasm and not to be able to get there for 5, 10, 15 minutes is SO frustrating."""
This comment of Views rings my alarm bells. For a couple of years this has been the case for me and I was putting it down to age !! And indeed it could be age.... I don't know.

[ViewsAskew]

PB - the only thing I can say is...it's not really you doing it. I know it sounds like a cop out, but until a person has had this alien (as Beth called it) in your head, he or she has NO idea just how hard it is to stop it. I guess I'm glad it's food and not gambling! Or sex with strangers! Or the other many things that could truly be horrible to live with. I'd prefer to be a normal weight again. But, I'll take fat any day over losing all my savings! That said...as Beth noted, it's really not much of a choice, is it. To either have no sleep and WED or have drugs that make our lives miserable in one way or the other.

[Joanie60]

Nice perspective Ann! We all need to hear the voice of reason once in awhile and as you say, the obsessions take control and beating ourselves up because of this particular side effect is pointless (we don't beat ourselves up because we get nauseous, or itchy, or sleepy, or hyperalert...but throw food into the mix and I, personally at least, beat myself up mercilessly).

Hang in there PB...

[Polar Bear]

""Hang in there""...
I'm hanging out, hanging over, hanging down..... muffin top. Big knickers, and the high waisted jeans - what a blessing they are.
Even wore spanx to a recent event. Sort of smooths out the lumps a bit, but pretty hard to breath comfortably.

OK.... I'm definitely not just as night time greedy as a month ago.... and having discussed it in this thread, I will sort this alien !!
Must think of a suitable alien name. ..... Fatso might suit. For the alien... not me

[badnights]

I'm hanging out, hanging over, hanging down..... muffin top.

[ViewsAskew]

I had my annual visit with Dr B a couple weeks ago. I meant to post right away so I wouldn't forget to post some of the things he said, but I forgot to - and now I may not remember much .

He did remind me that the infusions are only good if the ferritin finds its way to the brain - that pesky blood brain barrier is a problem in this case. I explained that I thought that I had about 3 weeks of help from the second infusion. But, the other day I realized I was wrong - I had at least 3-4 months help. Right before the infusion, the meds rarely worked at my normal dose. I had many nights with fractured sleep, if any, and was routinely pushing the dose limits. When the infusion started to, help, I reduced the meds by about 40%. But in about 3 to 4 weeks, I was back at my normal dose. So, I thought that it didn't help longer than that. A few weeks ago, things went back to the really bad phase - where the regular dose wasn't enough, I was staying up all night, and so on. All the sudden I realized that I had about 3 months where I could actually COUNT on things being under control. Where I rarely had any late nights and slept through the night most times. Sure, a hiccup here and there, but nothing horrible. Right now, I'd do a lot to get back to that!

Dr B said I could get a third infusion - so here's hoping it helps. Right before I went to see him the serum ferritin was 190. It was about 3 weeks later that everything got worse again, so I'm guessing that 190 is close to the minimum I need to maintain.

He also asked if I could legally get medical marijuana. It's in the first stages here and is very limited, unfortunately, so I cannot get it legally. Dr B said that as a pulmonologist, he doesn't like the smoking aspect, but said that several of his patients are showing excellent responses to just one or two vapor hits and he said he's come around to it. Husband and I have talked a lot about moving - more and more I am thinking of packing up and going to So Cal - I'd be close to my doctor, have access to medical marijuana, and would have much better vitamin D access (sunshine) year round than I have here.

He told me about something else that I wanted to post about, but I can't remember what it is....

[Joanie60]

Thanks for the summary!!! Good info and some hope in there...my hematologist who did my iron infusion said he would go up to three if he thought it was indicated. I've only had one, and it helped for exactly.....(drum roll)....one night!! Got my ferritin up and it stayed up, along with some number that stayed down, and doc decided second infusion was not indicated.

Sunny Southern CA sounds pretty tempting to me after the winter we've had on the East Coast!!!

Hugs Joanie

[debbluebird]

That was good info Ann. Maybe you should move.
DEB

[EeFall]

You can use a vaporizer to get what you need from marijuana so you don't have to inhale smoke. It heats it to the point that the meds come out of the leaves without burning it, around 370 degrees F, depends a little on the dryness. I have a couple of older vaporizers like the Puffit-X but I noticed that there are many far better ones on the market now that it is legal in Colorado and Washington State. I gave up on it though because it wasn't really helping me that much.

[ViewsAskew]

Yeah, the vaporizers are one of the reasons that Dr B feels that it's appropriate - very little injury to the lungs that way. In retrospect, I wish that the party my cousin had would have been AFTER my visit with Dr B. One of the attendees has back injury/pain and pulled out a vaporizer. I would have asked to try it, I think!

Deb, we actually looked at two condos in San Diego. Both were out of our price range, but not by as much as I'd anticipated. It made me feel better that, especially if I could work this year, we'd have enough for a down payment in about a year for something that is 20% higher than the cost of our current home. And, if either of us found a job in the area, we could stay with my cousin for a few months, too. So, there are options on the table! Now, if only they had water in the state....