Tonibunny Posted November 24, 2009 Report Share Posted November 24, 2009 Hi everyone,I started taking Fludrocortisol a week ago, and I feel utterly utterly exhausted and my bodyclock is completely out of whack. I stopped taking Gabapentin at the same time, and I'm wondering if that has contributed to how bad I feel.I'm really miserable, I got through a huge spinal surgery earlier this year and had been looking forward to getting my life back, and I'm finding it really hard to cope with being so incapacitated. I'm really very scared as well. I know that many people here will identify with this frustration - please, I would really appreciate some advice or support right now! Thank you.....I hope everyone else here is doing relatively OKT xxx Quote Link to comment Share on other sites More sharing options...
prettyinpink Posted November 24, 2009 Report Share Posted November 24, 2009 I've read that Gabapentin can have some serious withdrawl symptoms if you stop taking it abruptly. Did you slowly decrease your dose or just stop? Quote Link to comment Share on other sites More sharing options...
TypewriterGirl Posted November 24, 2009 Report Share Posted November 24, 2009 Going off of Gabapentin was a really awful experience for me, even when I weaned off of it. I remember being a Disneyland and having bad brain zaps and feeling horrible. Have you tried going off of it before? It might be at least part of the issue. Quote Link to comment Share on other sites More sharing options...
Tonibunny Posted November 24, 2009 Author Report Share Posted November 24, 2009 Thanks for your replies! I really appreciate it.I have been slowly cutting down the Gabapentin for several months, I was originally on 3000mg (5 X 600mg) but eventually managed to get it down to one 600mg tablet per day. Every time I tried to stop that one tablet I would feel really odd, like my brain was wired and fizzing (similar to your "brain zaps" perhaps Typewritergirl?) and I wondered if I should get a prescription for a lower dose capsule as 600mg is still quite a large dose. However, I had one last attempt to stop completely, and this time I didn't get any of the fizzy-brain sensations - just physical exhaustion, which is completely different. So, I'm not sure if it is down to the Gabapentin, or if it's because of the Fludrocortisol, or even if it's all a coincidence and I'm ill with something else!I have no idea whether to wait and see if things get better, or try taking Gabapentin again. I can't easily see my GP for advice as I'm currently staying over 100 miles from my home and I'm too ill and knackkered to get the train back, but as soon as I feel up to it I'll get myself back there. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 24, 2009 Report Share Posted November 24, 2009 'knackered'? You sound like an aussie??Its unusual I think for Florinef to do that - when I took it I felt SUPER wired and unable to concentrate and then copped four days of migraines. Wish I could take it as for many its gold. Quote Link to comment Share on other sites More sharing options...
Tonibunny Posted November 25, 2009 Author Report Share Posted November 25, 2009 I'm English I'm afraid The fludrocortisol I'm taking is in the form of a solution, which I have to keep in the fridge and measure out using a syringe. It sounds like Florinef usually comes in tablets - it sounds a lot more practical than this stuff! I'm already a bit worried about how I'm going to take it with me on camping holidays and things. Do people generally notice a difference pretty soon after they've started taking Fludrocortisol? My cardiologist told me it could take a few weeks before I started to feel any benefit so I'm not too worried yet, just fed up with whatever's making me feel so exhausted. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 25, 2009 Report Share Posted November 25, 2009 What dose are you taking? What time of day are you taking it? Florinef should most definitely be taken in the AM otherwise it will mess with your bodyclock big time. Like Rama, I have heard & experienced a pretty big surge of energy when I took florinef. I felt that change almost immediately.You have to take this med with lots of extra water and salt or else it won't work.....Hope it gets better!Julie Quote Link to comment Share on other sites More sharing options...
Tonibunny Posted November 25, 2009 Author Report Share Posted November 25, 2009 Thanks Julie I've been taking a dose of 2.5ml in the morning by 9am at the latest. I haven't really been drinking much water though so I'll make sure I do that.I was on slow sodium (10 salt tablets a day) prior to being put on this, but it didn't make any difference so my cardiologist told me to stop for now but to hang onto the pills I had left as I may need to take them as well as the fludrocortisol. Quote Link to comment Share on other sites More sharing options...
erik Posted November 25, 2009 Report Share Posted November 25, 2009 I got knocked on my duff and completely pillywonkered for a few days about a week & a half in to first starting fludro. It passed and then became somewhat beneficial. Second time on it went smoothly and it seemed to help me even more. Never noticed a wirey side or sleep adjustment personally, just more "vital" overall and it shifted my BP up and more stable (so it falls less often, and when it does fall it stays above my pre-fainting zone).Can we say pillywonkered here? I just made it up to compete with the down-under and over-pond'ers. Hope I didn't randomly pick a bad word Quote Link to comment Share on other sites More sharing options...
gertie Posted November 25, 2009 Report Share Posted November 25, 2009 When I came off Gabapentin I got 100Mg caps to taper off with. Quote Link to comment Share on other sites More sharing options...
mkoven Posted November 25, 2009 Report Share Posted November 25, 2009 florinef is a wonder drug for me. in my case it started helping almost immediately. initially i felt pretty wound up on it (not in a good way). I either got used to it or it stopped bothering me. I take .075 in the morning. I also take midodrine which was not enough on its own.I took neurontin for a while after back surgery. I was told there would be no side effects stopping it-- it was AWFUL. Won't touch that stuff. I have done poorly on other anti-seizure meds too (keppra, zonegran), also prescribed for headaches or neuropathic pain. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 25, 2009 Report Share Posted November 25, 2009 Thanks Julie I've been taking a dose of 2.5ml in the morning by 9am at the latest. I haven't really been drinking much water though so I'll make sure I do that.I was on slow sodium (10 salt tablets a day) prior to being put on this, but it didn't make any difference so my cardiologist told me to stop for now but to hang onto the pills I had left as I may need to take them as well as the fludrocortisol.I'm glad you're taking it in the AM Unfortunately, I'm absolutely "pillywonkered" (Thanks- Eric!) by 2.5ml. That's the equivalent of 1/2 tsp BUT without knowing the strength of your med I can't translate it to our equivalent. In the US, we use 0.1mg tablets that are scored so we can cut them and many of us do.Definitely increase your water and salt intake. When my son was taking 0.2mg, he took an additional 6 salt tablets a day. The florinef helps hold your water in to boost your blood volume. If you don't have that extra water or salt available, it won't work. Be sure to take your BP a few times throughout the day. This med can raise it too high if your dose isn't just right. A headache is usually the sign that your dose is too high. The way you are feeling MIGHT suggest that your dose is too low. It's actually good to titrate it up slowly. Tell us the strength of your med (your bottle should say how many mg per 5ml) and maybe we can figure out your dosage and see how that relates to the "average." Julie Quote Link to comment Share on other sites More sharing options...
Tonibunny Posted November 25, 2009 Author Report Share Posted November 25, 2009 Hi Julie,The stuff I've got is Fludrocortisone oral suspension, 100mg in 5ml. I've been drinking extra water today but I have absolutely no appetite and am struggling to eat anything. Perhaps I should try taking a salt pill or two to see if they help perk me up? I've no idea what my blood pressure is and don't own a cuff or anything to test it with - should I get one? what do other people do to check theirs? Thanks again for all your help!T xx Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 26, 2009 Report Share Posted November 26, 2009 STOP!!!! You are taking 50mg a day. THAT is a MAJOR overdose. I don't mean to frighten you, Tonibunny, but 0.1mg is a high starting dose.Are you sure you got that dosage right??? Take your BP ASAP- It could be really high. Hope I'm over-reacting to a miscalculation but florinef can raise your BP to a dangerous level. 50mg is unheard of.....No wonder you can't sleep at night! At the very least, google your med and check your dosage. Maybe it's not comparable to US florinef. PLEASE let us know what you find out.Big Hugs-Julie Quote Link to comment Share on other sites More sharing options...
mkoven Posted November 26, 2009 Report Share Posted November 26, 2009 I think 100mgs is the same as .1, which is the standard starting dose. (mil stands for a thousand, right? so 100 is one tenth of that?) I take less than that, .075, or 3/4 of a .1 tablet. But most folks take a whole pill. I would check with your pharmacist to make sure. Quote Link to comment Share on other sites More sharing options...
TypewriterGirl Posted November 26, 2009 Report Share Posted November 26, 2009 Hi Julie,The stuff I've got is Fludrocortisone oral suspension, 100mg in 5ml. I've been drinking extra water today but I have absolutely no appetite and am struggling to eat anything. Perhaps I should try taking a salt pill or two to see if they help perk me up? I've no idea what my blood pressure is and don't own a cuff or anything to test it with - should I get one? what do other people do to check theirs? Thanks again for all your help!T xxI bought my blood pressure cuff from Amazon - it's an Omron (my doctor recommended it) and I think it was only $35, which is great compared to the $85 at the drug store. AND I didn't have to move off of my couch to get it. I think I'm going to bedazzle it too. Anyway it's been very accurate and helpful in seeing what's wrong at any point in the day. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 26, 2009 Report Share Posted November 26, 2009 I think 100mgs is the same as .1, which is the standard starting dose. (mil stands for a thousand, right? so 100 is one tenth of that?) I take less than that, .075, or 3/4 of a .1 tablet. But most folks take a whole pill. I would check with your pharmacist to make sure.I hope I'm really thick, but I don't see HOW 100mg is the same as .01mg.... Quote Link to comment Share on other sites More sharing options...
Tonibunny Posted November 26, 2009 Author Report Share Posted November 26, 2009 OMG I nearly scared myself stupid here! It's all my fault - I'm so sorry to have worried you Julie - I meant MICROGRAMS not MILLIGRAMS. I feel thick, but I usually work with pounds and ounces! Here's a picture of the bottle....http://www.flickr.com/photos/62533471@N00/4135203572/Hope this looks more reasonable! Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 26, 2009 Report Share Posted November 26, 2009 OMG I nearly scared myself stupid here! It's all my fault - I'm so sorry to have worried you Julie - I meant MICROGRAMS not MILLIGRAMS. I feel thick, but I usually work with pounds and ounces! Here's a picture of the bottle....http://www.flickr.com/photos/62533471@N00/4135203572/Hope this looks more reasonable! Phew- much more reasonable!!! I really was frightened for YOU. You are taking .05mg, 1/2 of a .01mg tablet here in the US, a very reasonable starting point. If you still feel really tired out and drained, I would definitely ask your doc if you could go up to .01mg or 100mcg. Keep taking lots of salt and water with it and have your potassium checked if you move up to a higher dose. My guess is that you need more....BUT please talk to your doc first!!!Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Tonibunny Posted November 26, 2009 Author Report Share Posted November 26, 2009 Thanks tons I haven't been having much salt at all as I feel so sick I have no appetite, but tomorrow I will be forcing myself to eat crisps and salted popcorn! Toni xx Quote Link to comment Share on other sites More sharing options...
erik Posted November 26, 2009 Report Share Posted November 26, 2009 I had some reduced appetite for a little while too... where I didn't feel the urge, but I didn't feel ill about eating either. Definitely do your best to keep intakes more toward your normal range... and consistent if at all possible. Hopefully something will be tolerable for you.TypewriterGirl: Bedazzle your BP Meter!!! That's hilarious. If I were the bedazzling type, I guess I'd bedazzle mine too. Quote Link to comment Share on other sites More sharing options...
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