Midodrine vs Droxidopa vs Mestinon

[Sushi]

What tests did you have to determine which type of low BP you had?

I know you asked Valentijn but, from my experience, a really good TTT should answer some of these questions. I agree, yours didn't seem to be a very good one!

Sushi

 

[Ema]

I did try Florinef for three months from my former cardio and it never raised my BP and made me feel worse and gave me headaches/pressure in my head.

Florinef can be a tricky bugger (wish I had a dime for every med/hormone I've written that about!).

Dr Lerner gives it at a dose of 0.2 mg which is 2 full tablets for OI. This is about double what Addison's patients need to take for some reason. Some patients need up to a full mg (10! tablets) though this would need extraordinarily careful monitoring.

There is no worse headache than improperly adjusted Florinef. Typically it means the dose is too low and the sodium intake is also too low. Supplemental sodium is extremely important and I find it hard to get enough from salt sticks.

It's hard to raise the dose though when things aren't going well. But with hormones, especially aldosterone, cortisol and thyroid (anything with a negative feedback mechanism) it's easy to suppress more than you replace which leaves one feeling worse than when they started and not reaping any benefits.

 

[Gingergrrl]

I know you asked Valentijn but, from my experience, a really good TTT should answer some of these questions. I agree, yours didn't seem to be a very good one! Sushi

@Sushi, I was asking everyone and thank you so much for the response. I wasn't sure if there was something beyond a really good TTT that provides this info.

@Ema

Florinef can be a tricky bugger (wish I had a dime for every med/hormone I've written that about!).

Me, too, and I'd be very wealthy right now if I did!

Dr Lerner gives it at a dose of 0.2 mg which is 2 full tablets for OI. This is about double what Addison's patients need to take for some reason. Some patients need up to a full mg (10! tablets) though this would need extraordinarily careful monitoring.

Wow, that is some crazy high dosing! My former cardio had me take a 1/2 pill on Mon, Weds, Fri to see how I tolerated it which was not too well! I ultimately got up to taking a 1/2 pill every day but felt so awful that we reduced it to a 1/4 pill every day. I can't imagine taking a higher amount than the 1/2 pill every day!

There is no worse headache than improperly adjusted Florinef. Typically it means the dose is too low and the sodium intake is also too low. Supplemental sodium is extremely important and I find it hard to get enough from salt sticks.

How would you get it if not from Salt Stick tablets? Do you actually eat that much sodium with food? Ironically both my former cardio and Endo said that with Florinef you no longer need to supplement with salt b/c the Florinef does it for you. When I found PR, I learned that this was not true. All of this occurred before I saw my ME/CFS doctor and he was not involved in this.

It's hard to raise the dose though when things aren't going well. But with hormones, especially aldosterone, cortisol and thyroid (anything with a negative feedback mechanism) it's easy to suppress more than you replace which leaves one feeling worse than when they started and not reaping any benefits.

I don't actually know what a negative feedback mechanism is and not sure I get this last sentence? All doctors have told me my aldosterone and cortisol are normal so not sure what else to do on that one. My thyroid was not normal (Hashimoto's) but with low dose Armour all the numbers are perfect. When I first started Armour, I actually felt great for about two months and then got dramatically worse and never got better.

 

[Ema]

I can't imagine taking a higher amount than the 1/2 pill every day!

That's what I mean...but you might have felt a lot better if you had. One always wants the minimum effective dose of any hormone or med , especially steroids.

But I remember titrating Florinef very well and the headache literally disappears when the dose is sufficient. It's like a miracle. And then the blood pressure raises as well provided sufficient salt and things start to improve.

Truly I hate to criticize, but your first cardio gave very bad advice in this respect as what he had you take is worse than nothing at all. It wasn't a fair trial in my opinion. And the only reason I say that now is that I would be more inclined to try again than start something like droxidopa given how little is actually known about how to use that new med.

I use Celtic sea salt dissolved in water. I don't mind the taste so I just put a quarter to half a teaspoon in every liter of water I drink. But you can also dissolve in a smaller amount of water and chase with plain water if the taste offends you.

A negative feedback mechanism is when the presence of a hormone sends a message back to the brain to stop producing more hormone because the level is sufficient. So for illustrative purposes only, you might be able to produce a level of say 10 cortisol units on your own. But then you take 5 units cortisol and your brain shuts down *some* cortisol production because it senses what has been taken. So now you might have only 7 cortisol units (the 5 you took plus 2 you are now making due to the suppression) instead of the 10 you had to start with. This is what is called suppressing more than you replace and why it is very very difficult to take low dose hormones and add to your own hormone production. It's usually full replacement dose or so little as not to interfere with your own production (which often has no effect on symptoms unless only a very mild deficiency is present).

If you got worse on Armour after a time of feeling better, that also points strongly to weak adrenal function.

What do you consider perfect thyroid numbers? I consider it to be TSH between 1-2. FT4 around 1.2 and FT3 in the top third of the range.

Normal is just a statistical representation of the population. The labs only tell part of the story anyway because we don't measure free cortisol typically or the enzymes involved in transformation. But that's a whole different thread!

Typically people see 5-10 different endos before they find one with a clue. Seriously. It's tragic how common this is in the Addison's population. And it's not any better in ours because typically we don't have frank adrenal insufficiency but rather a brain problem causing HPA axis dysregulation instead.

 

[Sing]

@Ema Am really appreciating your posts! For everyone, I have briefly tried both Mestinon and Droxidopa.

I am also on Florinef and Cortef, both low dose. I need more Florinef than I take which is only half of a .1 mg pill, but the reason is that both times I tried to up the dose, I got instantly depressed. I also definitely need a lot of salt and take it. With Cortef I was okay with 5 mg twice a day for over a decade but think I may need a higher dose. Taking that total of 10 mg a day did not seem to repress my output, such as it was, as I continued to have the same results until recently. I suspect my thyroid level has dropped and that my two thyroid drugs need to be increased because I have become extra cold. Am currently being tested on my thyroid level using all the tests Ema mentioned so I am grateful for her recommendations.

Back to Mestinon, I stopped while still using only a partial dose because it was increasing my already considerable muscle aching and doing nothing whatsoever for my blood pressure. I did try raising the dose very briefly and it still didn't help my hypotension.

As for Droxidopa, I started to participate in the study called Phoenix that its drug company designed. So I began with the lowest dose they wanted to test with the idea that I would be titrated up. What I found was the first dose in the morning did help. I could take a walk and feel ok! Normally in the morning I struggle to stand for long and to walk. My bp wasn't yet normal but it was improved. Ideally I could have used probably twice the amount. But here is where the story became unfortunate. The drug company design was that I had to take it two more times during the day, the last one being very late afternoon or dinnertime. This was the problem. I don't think my body could get rid of the earlier doses that fast and they built up. Also my blood pressure is higher as the day goes on--not high, just creeping up to normal. So, Droxidopa at those times raised my bp too high. I still really needed to lie down and rest during the day but could not and for a few days was sitting upright until midnight in order for it to go down enough so that I felt safe lying down. My night time bp had gone up to 180 over something which was absolutely unprecedented.

The doctor supervising me is an Autonomic specialist within Neurology. He was very understanding and kind, and said that he would be willing to prescribe it for me when it fully passes the FDA requirements (so that it will be obtainable and cheaper, I gathered, though he was willing to do the paperwork so that I could get it now). At that point he and I would both be going for a somewhat higher dose but only in the morning. His opinion then last August was that it would pass muster with the FDA by Christmas, but of course it may be slower than that.

I also take Midodrine which is pretty good but it takes 2 hours to kick in in the morning and 1 1/2 hours later to kick in. It makes me chilly of course as it shuts off circulation to the skin. I wonder if it could possibly by making the SFN (Small Fiber Neuropathy) I also have, worse? Still Midodrine seems pretty benign and not expensive.

 

[Gingergrrl]

@Sing

@Ema Am really appreciating your posts!

Me too, and thank you, @Ema, for all the info you have given and I still need to respond to some of it!

For everyone, I have briefly tried both Mestinon and Droxidopa.

@Sing Thank you for posting about your experiences and I have some questions for you...

I need more Florinef than I take which is only half of a .1 mg pill, but the reason is that both times I tried to up the dose, I got instantly depressed.

I was only ever able to tolerate half of a 0.1 mg pill as well and it didn't make me depressed but it gave me headaches and what felt like inter-cranial pressure. It just made me feel sicker and never raised my BP. I tried it for three months.

Back to Mestinon, I stopped while still using only a partial dose because it was increasing my already considerable muscle aching and doing nothing whatsoever for my blood pressure. I did try raising the dose very briefly and it still didn't help my hypotension.

You are the third person who has now said that Mestinon did not increase their hypotension. I just asked my CFS doctor about this med to see what he thinks of it for me (for my chronic hypotension and autonomic issues.)

As for Droxidopa, I started to participate in the study called Phoenix that its drug company designed. So I began with the lowest dose they wanted to test with the idea that I would be titrated up.

This is sounding very similar to what I am being asked to try. It is not called the Phoenix study but it is a specific plan where you can only get the med from the company and it is not available through your regular pharmacy. There is a specific titration schedule which looks insane to me. You start with one 100 mg pill but then you quickly have to take it 3x per day (300 mg total) and then increase the dose of the pills so by the last step you are taking a 600 mg pill 3x/day (for a total of 1800 mg.) The idea that my body could tolerate this amount of titration at that speed is insane and I take tiny micro doses of everything.

They are saying my co-pay is $836 per month (with insurance paying their portion!!!) unless I am in this free study or whatever it is called. If there was a way to get this med at a normal price from a regular pharmacy and try one pill and see how I react to it, I might be willing to try it but the parameters of how to get it and take it seem ridiculous to me.

Ideally I could have used probably twice the amount. But here is where the story became unfortunate. The drug company design was that I had to take it two more times during the day, the last one being very late afternoon or dinnertime. This was the problem. I don't think my body could get rid of the earlier doses that fast and they built up.

This is what I think would happen to me as well. I am so sorry you had to go through that.

Also my blood pressure is higher as the day goes on--not high, just creeping up to normal. So, Droxidopa at those times raised my bp too high. I still really needed to lie down and rest during the day but could not and for a few days was sitting upright until midnight in order for it to go down enough so that I felt safe lying down. My night time bp had gone up to 180 over something which was absolutely unprecedented.

I have to lie down during the day as well although in my case my BP stays consistently low (and never creeps up to normal as the day goes on.) Even with Midodrine, my systolic does not get over 100. It did when I very first started Midodrine but is now back to baseline. But I would still be afraid to lie down with Droxidopa and would have to follow the rules.

His opinion then last August was that it would pass muster with the FDA by Christmas, but of course it may be slower than that.

Do you mean this Christmas (2014) or last year (2013?) I am so confused b/c my cardio said that Droxidopa has full FDA approval as of a few months ago but if this is the case, why is it not available through a normal pharmacy like CVS?

I also take Midodrine which is pretty good but it takes 2 hours to kick in in the morning and 1 1/2 hours later to kick in. It makes me chilly of course as it shuts off circulation to the skin. I wonder if it could possibly by making the SFN (Small Fiber Neuropathy) I also have, worse? Still Midodrine seems pretty benign and not expensive.

Generic Midodrine is only $5 per month and I can take it however I choose which right now is 2.5 mg 2x/day. Even when it does not raise my BP, it makes me feel calmer and reduces my shortness of breath so I am sticking with it for now.

@Sing, I was curious of your full autonomic med regime since you have tried many of the things I am curious about? Do you only take Midodrine or other meds, too? Right now I am taking Atenolol and Midodrine. Thanks so much for any info.

 

[Sing]

@Sing



Me too, and thank you, @Ema, for all the info you have given and I still need to respond to some of it!



@Sing Thank you for posting about your experiences and I have some questions for you...



I was only ever able to tolerate half of a 0.1 mg pill as well and it didn't make me depressed but it gave me headaches and what felt like inter-cranial pressure. It just made me feel sicker and never raised my BP. I tried it for three months.



You are the third person who has now said that Mestinon did not increase their hypotension. I just asked my CFS doctor about this med to see what he thinks of it for me (for my chronic hypotension and autonomic issues.)



This is sounding very similar to what I am being asked to try. It is not called the Phoenix study but it is a specific plan where you can only get the med from the company and it is not available through your regular pharmacy. There is a specific titration schedule which looks insane to me. You start with one 100 mg pill but then you quickly have to take it 3x per day (300 mg total) and then increase the dose of the pills so by the last step you are taking a 600 mg pill 3x/day (for a total of 1800 mg.) The idea that my body could tolerate this amount of titration at that speed is insane and I take tiny micro doses of everything.

They are saying my co-pay is $836 per month (with insurance paying their portion!!!) unless I am in this free study or whatever it is called. If there was a way to get this med at a normal price from a regular pharmacy and try one pill and see how I react to it, I might be willing to try it but the parameters of how to get it and take it seem ridiculous to me.



This is what I think would happen to me as well. I am so sorry you had to go through that.



I have to lie down during the day as well although in my case my BP stays consistently low (and never creeps up to normal as the day goes on.) Even with Midodrine, my systolic does not get over 100. It did when I very first started Midodrine but is now back to baseline. But I would still be afraid to lie down with Droxidopa and would have to follow the rules.



Do you mean this Christmas (2014) or last year (2013?) I am so confused b/c my cardio said that Droxidopa has full FDA approval as of a few months ago but if this is the case, why is it not available through a normal pharmacy like CVS?



Generic Midodrine is only $5 per month and I can take it however I choose which right now is 2.5 mg 2x/day. Even when it does not raise my BP, it makes me feel calmer and reduces my shortness of breath so I am sticking with it for now.

@Sing, I was curious of your full autonomic med regime since you have tried many of the things I am curious about? Do you only take Midodrine or other meds, too? Right now I am taking Atenolol and Midodrine. Thanks so much for any info.

Thank you for sharing! I take .05 Fludrocortisone (Florinef generic), 5 mg Midodrine in the morning with an option to add 2.5 later which I could use but don't often take, and I eat loads of salt with food and drink about 1 gal and 1 pint per day of water. I drink a qt of soy milk too. I also have coffee twice a day, which also helps raise bp. I have a good blood pressure cuff from the pharmacy which I don't bother with unless I am taking a new drug as I already know my range.

Last I checked in with my Neurologist, the Droxidopa wasn't fully passed yet, but gather from what you are saying that it now is. The Neurologist thought it would be available by this Christmas but it seems it is earlier. That is good information about the cost. That plan from the drug company was the same as in the study. If you could get your doctor to prescribe you 5 or 10 pills, you could find out how your body reacts. There is a rapid response so no mystery about it, but it would be good to monitor your bp when giving yourself a trial, if that would be possible. Let us know what your experiences are!

 

[SDSue]

@Gingergrrl - I started taking Yohimbe because a study came out showing that ADRA2A is over-expressed in ME patients following exertion. ADRA2A can inhibit the release of norepinephrine, which is something I've consistently tested low in. So I gave it a try.

Before that I was on Strattera, which is a Norepinephrine Reuptake Inhibitor (NRI) that worked very well, but was ridiculously expensive. Yohimbe is a tree bark, and much cheaper, in addition to being the most potent and specific antagonist of ADRA2A.

I can't remember if you have POTS or a different type of dysautonomia? I know others are on Strattera as well and wonder how it worked for you. Is Yohimbe working as well and how do you dose it?

Also, is the norepi test a standard blood test that I can ask my doc to order? Thanks so much.

 

[Valentijn]

I can't remember if you have POTS or a different type of dysautonomia? I know others are on Strattera as well and wonder how it worked for you. Is Yohimbe working as well and how do you dose it?

I have low pulse pressure, often under 30. Strattera worked well, if I took 10mg three times per day. Though I think some just took it twice per day. And I had to made sure it wore off before bedtime, otherwise I'd feel a bit too hyped up to sleep.

Also, is the norepi test a standard blood test that I can ask my doc to order? Thanks so much.

I think the big labs offer it ... usually it will be part of a catecholamines blood panel which tests dopamine, norepinephrine, epinephrine, and sometimes serotonin.

Quest Diagnostics catecholamines
Quest Diagnostics norepinephrine
LabCorp catecholamines

 

[orion]

Hi Valentijn,

I'm considering trying Yohimbe. Can you tell what dosage you take, and what brand you use? I've been reading that some brands are far less effective than others.

Thanks

 

[SDSue]

Thanks, @Valentijn . I'm glad to see Quest offers both supine and upright. @Sushi do you know how long one must be supine and then upright in order to get valid readings?

I, too, have very low PP when upright - usually around 10. I'm going to look into Yohimbe. Any cautions that you know of?

(sorry for hijacking your thread, @Gingergrrl - I can take this to a different thread if you wish.)

 

[Valentijn]

I, too, have very low PP when upright - usually around 10. I'm going to look into Yohimbe. Any cautions that you know of?

I'd definitely start with a low dose. I used TwinLab's Yohimbe Fuel 8.0, and tried a full capsule to start with. Then I got a nasty headache But at 1/4 of the dose, it worked very well for my blood pressure and didn't cause a headache or any other side effects.

I split it into smaller doses myself, using empty capsules and a tiny spoon - the "SMIDGEN" spoon from this set works quite well: http://www.amazon.com/Dash-Smidgen-Pinch-Measuring-Spoon/dp/B002X9I4RC

So I end up with approximately 100mg of Yohimbe per dose, which TwinLab's clams is 2mg of Yohimbine (the active ingredient) per dose.

Like with Strattera, I don't take it near bed time. My typical dose times would be when I wake up around 7am and the 2nd dose around 1:30pm. If I forget the 2nd dose, I never take it past 4pm and just suffer through a crappy evening instead of being awake half the night.

It's also a very good idea to keep an eye on your heart rate and blood pressure for a while when starting anything which messes with BP. It's also recommended to not take it within a couple weeks of having had an MOAI, and probably not a good idea to combine it with an NRI or anything else having an impact on norepinephrine.

Oh, and it's usually in the "Penis" section of supplement shops, which can feel a little awkward when buying it in person The TwinLabs version has a bizarre warning on the label that it should not be taken by females, but I haven't seen any research or other data supporting that statement at all. I think they include it to sound like they're very serious about it being a potent remedy for erectile dysfunction, etc etc.

I've been on it for over a year so far with no issues. I've not had any problems with needing a larger dose, etc. I also haven't had any problems with stopping it immediately when needed for testing, and it has a relatively short half-life. I did have to cut back on my magnesium supplementation when I started it, but I count that as a good thing It also hasn't caused me to grow a penis or turn into a nymphomaniac.

 

[Gingergrrl]

Thank you for sharing! I take .05 Fludrocortisone (Florinef generic), 5 mg Midodrine in the morning with an option to add 2.5 later which I could use but don't often take, and I eat loads of salt with food and drink about 1 gal and 1 pint per day of water. I drink a qt of soy milk too. I also have coffee twice a day, which also helps raise bp. I have a good blood pressure cuff from the pharmacy which I don't bother with unless I am taking a new drug as I already know my range.

Last I checked in with my Neurologist, the Droxidopa wasn't fully passed yet, but gather from what you are saying that it now is. The Neurologist thought it would be available by this Christmas but it seems it is earlier. That is good information about the cost. That plan from the drug company was the same as in the study. If you could get your doctor to prescribe you 5 or 10 pills, you could find out how your body reacts. There is a rapid response so no mystery about it, but it would be good to monitor your bp when giving yourself a trial, if that would be possible. Let us know what your experiences are!

@Sing Thanks for the info and I wasn't sure if you had given up on Florinef or stuck with it. Do you find that the .05 dose actually raises your BP? Does it give you headaches? The 5 mg of Midodrine made me so sedated that I literally fell asleep for hours. The 2.5 is okay but it will only raise my BP from like 90/60 to maybe 95/65 as an example. My cardio wanted my BP to be around 115/70 (approx) but that is never going to happen as fas as I can see.

I try really hard to drink water, Pedialyte, etc, but don't come close to the amount that you drink. I am not able to tolerate any caffeine (not even decaf coffee) and before I was ill, I used to drink coffee & diet coke all day (not that this is a good thing, but just saying that I had no tachycardia or problems tolerating it.)

As far as the Droxidopa, I wish I was able to just get 5-10 pills and just do my own trial of it like you said but this is not the case. It's a very stringent program and you have to take the first days doses at the cardio's office and stay there for hours in case something goes wrong (not just for me but for all of his patients getting this med.) To me this is not a ringing endorsement and makes me want to try it even less!

 

[Gingergrrl]

Thanks, @Valentijn . I'm glad to see Quest offers both supine and upright. @Sushi do you know how long one must be supine and then upright in order to get valid readings?

I, too, have very low PP when upright - usually around 10. I'm going to look into Yohimbe. Any cautions that you know of?

(sorry for hijacking your thread, @Gingergrrl - I can take this to a different thread if you wish.)

@SDSue Don't be silly, you are not hijacking my thread and this is very relevant info for me and all of us! So please keep the conversation here and no worries .

I did the catecholamines test at Quest but no one told me anything about a supine and upright part and the whole test was just done in a regular seated position. All the numbers were normal except that Dopamine was really low (like off the charts.) My doctor said not to worry about that part and he had tested me on the other components due to the over-methylation reaction that I had. So, I don't think any part of my protocol changed due to this test but I am also not sure how accurate it was if I was supposed to be supine and then upright.

 

[Gingergrrl]

Oh, and it's usually in the "Penis" section of supplement shops, which can feel a little awkward when buying it in person

@Valentijn This made me laugh but I am easily entertained.

 

[SDSue]

Oh, and it's usually in the "Penis" section of supplement shops, which can feel a little awkward when buying it in person

I do so love the unexpected laugh. This made my day (Why yes, it is an exciting life of ME I lead!)

Thanks for the detailed info regarding Yohimbe. Can't hurt to try it. I'm finding that the longer I'm on LDN, the fewer really bad dysautonomia days I have. It sounds like I could use yohimbe only on the bad ones? - I can tell by the cardiac "weirdness" before I even get out of bed.

Would you mind telling me which of the pictured products is the one you use? The grey one doesn't say "8" on the label, but it does in the product description, so I'm confused. Thanks.

@SDSue Don't be silly, you are not hijacking my thread and this is very relevant info for me and all of us! So please keep the conversation here and no worries .

Gracious as always. Thanks!

 

[Gingergrrl]

I am not saying this to deter anyone else but I think for myself, Yohimbe would give me terrible tachycardia.

 

[Sushi]

I try really hard to drink water, Pedialyte, etc, but don't come close to the amount that you drink.

I know you have mentioned before how difficult it was for you to drink liquids but I am curious about what that feels like as I don't have that problem and can't imagine what it is like. My doc told me to drink at least 2 liters and my autonomic doc told me to drink 500 - 750 mls of an electrolyte drink before even getting out of bed to help counteract the dehydration of a night of not hydrating. This is very helpful to me to "find my legs" in the morning.

I'm glad to see Quest offers both supine and upright. @Sushi do you know how long one must be supine and then upright in order to get valid readings?

Sorry, I don't know the answer. In terms of BP testing I believe about a half hour supine is required, but I don't know if this correlates with catecholamine testing.

Incidentally (for SDSue) strattera took away all my OI symptoms. I also tried Yohimbe and it helped but, for me, not as much. If you are ever prescribed strattera, most dysautonomia patients find that they have to titrate it up very slowly to tolerate it. For me that was a third of a cap every other day at first.

Sushi

 

[Valentijn]

Thanks for the detailed info regarding Yohimbe. Can't hurt to try it. I'm finding that the longer I'm on LDN, the fewer really bad dysautonomia days I have. It sounds like I could use yohimbe only on the bad ones? - I can tell by the cardiac "weirdness" before I even get out of bed.

My OI was pretty bad consistently, so I used it every day. I don't think it would be a problem just using it once in a while instead - that's basically how it's used for erectile dysfunction anyhow I also took an extra dose on the nights when I had bad tachycardia and couldn't sleep. It was the only way I could get my heart rate under 95, and on those nights it helped my sleep instead of keeping me awake.

I don't take it currently because I don't have much (any?) OI in the mornings now, and in the afternoon I get crappy hypotension from the antibiotics (herxheimer reaction) which is totally different from my usual OI. The Yohimbe doesn't seem to have much or any impact on the herxing hypotension, which features a lot of blood pooling very quickly when I stand up.

Would you mind telling me which of the pictured products is the one you use? The grey one doesn't say "8" on the label, but it does in the product description, so I'm confused. Thanks.

Mine's the black and red one. Maybe it used to be silver? The iHerb site lists a silver one as discontinued.

 

[Gingergrrl]

I know you have mentioned before how difficult it was for you to drink liquids but I am curious about what that feels like as I don't have that problem and can't imagine what it is like. My doc told me to drink at least 2 liters and my autonomic doc told me to drink 500 - 750 mls of an electrolyte drink before even getting out of bed to help counteract the dehydration of a night of not hydrating. This is very helpful to me to "find my legs" in the morning.

@Sushi I don't know how to explain it except that I literally never feel thirsty. Your post prompted me to ask my husband and step-dtr what it feels like to be thirsty and I couldn't relate to it at all. So drinking fluids is just a chore to me.

We bought light weight plastic cups w/straws to make it easier (since I can't carry heavy things) but it still feels like a burden. It is similar to taking meds and supplements but actually worse b/c those I can take rather quickly but drinking is now something I am supposed to be doing all day.

Back when I was healthy, I used to drink diet soda or coffee drinks from Starbucks but never finished them and just sort of sipped them all day b/c they tasted good. It is also easier for me to drink things that are carbonated and if I feel nauseous it is easy to drink ginger ale b/c it serves a purpose but still doesn't relate to thirst.

I really don't recall ever feeling thirsty and now I am worried this is very abnormal?