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Hi! Yeah, I too have the bouncy moving of images. It is like my eyes can't focus. It actually happens a lot. Esp. if the lights are weird, and there is a lot of movement, color etc. to focus on. Good luck!

Jeez, that stinks! Just make sure you get your records, b/c I had that happen to me. Later I had to pay $80.00 for my records and wait like 2 months! Good Luck in finding a dr!

Yeah, I stopped taking it. I was struggling to regulate my body temp. It tended to be low when I had much of it in my system. Also, the tachy contd. It also increased my RLS symptoms during the day-- uncomfortable! And add in migraine and everything else, it was pretty miserable until it pretty much wore off and I would feel better, but it was time to take it again. Make things worse I had people jump on my case today in the midst of all of it, and tell me how bad of a person I was, and I can't manage time etc... Not, a good thing when you can't think straight! They have no concept of energy conservation. They constantly tell me that everyone has a lot going on etc. Which they do, but even under some of those circumstances it is easier to do things then, instead of when every waking moment you have to deal with this delicate balance! I don't like being told I am a bad person because I do not have the energy to be superwoman and get everything done in the timeframe they see fit. I can manage my time, it just is differently then they do. (Sorry for my mini rant!) So, I guess I to trying to find something else!

Hope it works well for you!

Jeez, thats dangerous! And sounds like something I would do! Bet you won't do that again!

Man, I wish it would have went better for you! That has to be beyond frustrating! At least I guess they didn't try to talk you into the surgery, and he said he will try to refer you to other drs. But, to have to make that long drive for all of them! Jeez! Have you ever seen anyone at OSU? I wish you luck!

Good luck Maxine! It sounds like a lot to go through! Hope it goes well!

I will have to make sure to watch! Thanks for the update!

Hi! I have been trying to keep my hands warm and using those little hand warmer pouches. I tend to have them in the pocket of my hoodie or jacket. If they are anywhere near me to where the heat can transfer to my torso/abdomen I get to feeling really sick. Nausous, stomach cramps, just everything goes haywire just with that little bit of heat. Even with layers in between the hotpacks and me. It is frustrating because it has happened a couple of times now. It wipes me out too! I can sleep forever after it! I figure it is probably along the same lines of my intolerance to hot/warm fluids. Anyone else out there ever experience this? Also, as a side note, I increasingly can not keep my hands or feet warm. I was told it was due to the neuropathy causing decreased circulation. Does anyone know is this the same as Raynauds Phenomenon? Do many of you have the same problem? Thanks!

Hi, Yeah, i probably didn't ask my question the best... I knew what Prolactin was, just not the affect of Melatonin on it. Besides your personal experience, do you know anywhere where this information is published, because I have read out there what I can find, but haven't come across anything along these lines? Sounds awful though! Hope to not have to worry about anything along those lines!

Hi, I took it earlier tonight. We will see. Thanks for ya'lls help! I know it is a hormone etc. What do you mean about the prolactin levels? What does that do? I made sure to not start taking it just on my own, it was suggested by a specialist neurologist, who as far as I can tell knows what he is talking about. So, I figure it should be fine. I don't plan to take it long term or less it ends up being some kind of miracle drug. As far as synthetic, i think it is, but not sure. It is the Nature's Bounty brand that I got at CVS, should that be fine? Has anyone gotten low body temps while on it? Mine today was just above 97 degrees. Seemed off for me, but I don't take it regularly. Thanks!

Thanks for the input! I may try it eventually, but right know things are changing up enough as it is.

Whoops, I was being pretty brain foggy on the 1/1 thing! HaHa! Man, some days... I wonder! Glad it is working good for ya!

Congrats on getting in and so soon! Hope all goes well!

I take a small dose of atenolol on top of all the other meds. I didn't notice any significant side effects from it. It did help me more (decreased symptoms further) when I started taking it. So, I think it is a good med to at least try, if not contraindicated. Good Luck!

Hi again! I tried 1.5 mg last night (I split the 3mg), and I had less side effects. Still dreamt more though... weird. But, it really didn't seem to help much at all with sleep. Maybe over time? At least I wasn't as groggy. Are the effects always immediate, so would I need to increase dosage to get an affect, and work through the side effects? Thanks!

Amy, That could be fun! I am not sure how those would work for that? Lots of great ideas!

Interesting question Tearose! I have no idea, but am interested in what you find out!

Hi! Yeah, I looked for a little bit, and couldn't find much of anything. But, I did find this topic interesting because this has becoming more and more of an issue for myself. I think it may be for me either med side effects or neurogenic bladder kinds of issues; difficulty emptying, increased frequency, and I guess less overall control (but not incontinence). This is definetly something that I wish would get better, or at least not any worse! I would be interested to know more! Do any meds increase these kinds of symptoms?

Hi! I was told to try Melatonin to regulate my sleep cycles. B/c I have a hard time sleeping at night, not too big of a problem sleeping most of the time during the day. I am totally in reverse of normal. I also have RLS so that is also probably part of the problem with night. Anyways, was told start with 3mgs for 2 weeks and then to 6mgs and then to 9mgs after increasing each after two weeks. So, I went back and pretty much read all the old posts. So, for one it seems like that will be a high dose in comparison to what many have tried/take. I also was looking at side effects. I found the popular one was vivid dreams. I kinda remember dreaming which I pretty much never do, so I think I did experience that. I also had the grogginess/hard to wake up feeling. I also feel like my heart is very fluttery, maybe tachy but haven't caught it yet. My weird possible side effect was last night (first time taking it) I suddenly had this very uncomfortable intense muscle pain in my legs, arms, and pretty much all over. It was weird! And very painful! I had no other explanation, and it was about an hour after taking it. Has anyone else had this? Does the grogginess in the morning go away after a while (couple of weeks) or is it pretty consistent? Then, if it is successful to regulating your sleep cycle have most of you that have used it, do you continue using it, or do you stop after things are "better"? Also, what kind of schedule is best? Take it an hour before sleep? Then allow for how many hours of sleep? So, how early do I have to go to bed? For it to work do you have to be pretty consitent over days to time of taking and going to sleep, if the whole point is to regulate sleep cycles? I am interested in anyones experience with this. I am wary on it, but trying to give it a try. Thanks!

Hi! I finally asked the pharmacist and she said it was just something they stuck in there and it doesn't mean anything! I think that they need to revamp their pamphlets! Just an FYI...

Hi! (again!) I asked first my GP about this today, and you know what her brillant response was? Just don't drink warm drinks!!! I mean seriously that is your wisdom! Did you ever stop to think WHY this has happened? No! So, then I asked one of my many neuros. Thank goodness he is helpful and listens, he heard it and agreed yes a way around it is don't drink hot things, but it does mean something. Actually it is quite significant in fact, at least in my case. It means that the neuropathy is not fully all distal as they had thought, and that it has moved in proximal and affecting systemic function. It is pretty much like regular heat intolerance, but with this it is my inner core not adapting to the temperture it is confronted with. So, then I get sick feeling. It is why it has gotten worse over time. Even barely warm things can set it off, because if it causes vasodilation (right, not constriction? brain issue ) ) then it can set off symptoms. And or less something is done, if there is anything, I guess it will continue to get worse, but nothing has been said about figuring that out. So, lets hope it stays with just hot drinks (or gets better)! I really want to do something about this neuropathy! I wish there was help somewhere! Any thoughts or insight on this?

Happy Birthday!!!

Happy Birthday!!!

Hi all! Have any of you ever taken Glucosomine/Chondritin for joint pain/arthritis? Wondered if it had any bad effects on us? Wouldn't think so, but I don't know much about it. Does it help if you did? Thanks for any insight!