Wife Is In The Hospital With Pots - Questions!

[Sunfish]

glad to hear that the appointment went well. from the few things you've shared it certainly sounds that the doc "gets it". from personal experience as well as based on that of others' over the years i will tell you honestly that one of the most valuable things in short and long term management is having a reasonable degree of access to a doctor who largely "gets it", i.e. s/he is familiar with the bigger dysautonomia physicians &/or research centers, is open to trying different things, knows there is no magic answer, etc..

it sounds like the doc you saw today has a good chance of being this person - the only reason i'm saying it's still a maybe being that you'll need more time to know for sure - and while you do seem to realize already that this is a good thing i can tell you that it is, sadly, a rarity. while there are certainly some of us who have been lucky (not with all doctors, but with at least some &/or one), there are literally some people who have lived years or even decades without being able to connect with a local doc willing to manage long-term treatment/ management. some of these people may travel to a "top spot" for diagnosis, treatment recommendations, etc., which can obviously be helpful, not to mention immensely validating for those who have previously been dismissed, but when it gets down to day to day management month after month & - in many cases - year after year, the reality is that many of the "top spot" docs are simply not set up to or able to manage patients long-distance &/or long-term. all of which is to say that, once some level of diagnosis is established (aka many people don't need every single available test that some bigger centers might offer) - and to a degree even more important than an "official" diagnosis - having a local "go to" doc is truly the MOST important & invaluable asset in treating & managing any type of chronic autonomic dysfunction. whether it's a specialist who is accessible (aka not someone who has a 6mth waiting list) or a primary care doctor willing to learn matters far less than the attitude, openness, etc. of the doctor. and at least initially it sounds as if you have someone who very possibly may fit the bill.

re: the option of seeing the doc that's closer to you, that is obviously more convenient & particularly if & when appointments will be happening every other week it will certainly make things much easier. if it doesn't work out though &/or if you find that you much prefer the doc you saw today it may be worth appreciating that there are a LOT of people on the board that would probably give their first born child - not really of course, but you get my point - in order to have a decent doctor who "get it" who is "only" an hour away. i am NOT minimizing the hassle of an hour drive but only trying to highlight how tough it can be to find a good doc who "gets it" enough to be worthwhile re: treatment strategizing but is also accessible. but enough rambling about that....i'm sure you get my point. and by no means am i discouraging you from trying the local option; hopefully that doc will be just as great when connected with communication with the other one. heck you may have some forum members moving your way to steal the docs you've found!

re: the treatment changes michelle's going to be trying they sound fairly reasonable, though i'm guessing the new florinef dose is .1 instead of the 1mg you typed? it's a dose that gets mistyped VERY often here on the forum:-). re: the midodrine, hearing your report that she feels a lot worse after about 3.5 hours - what i call "crashing" for myself - is actually a good thing in that it does indicate that it's helping at least a bit, even if not enough yet to make her feel "better" (rather than just a little less horrible). i will be honest that i have never heard of anyone taking midodrine every 2 hours on a regular basis; i've only heard of 2hrs being used in regard to needing to take more than what was already taken, i.e. if the initial dose wasn't high enough, b/c in reality - and seemingly in line with what michelle has already experienced - the initial dose will still be in her system after 2 hours. it may be that the doc is using that option though to help figure out which dose is best b/c if she's taken, say 5mg, at 10am & then takes another 5mg 2 hrs later & feels the best she does all day an hour after that, in reality she will have had 10mg in her system at that time which would show that dose as something that might in fact be ideal. i am certainly not trying to second guess &/or supersede anything you were told by the doctor you saw as it sounds like he is familiar with midodrine. just be aware that any dose she takes will generally "kick in" approximately 30 minutes (give or take) after she takes it - many of us can literally feel exactly when it takes effect - and then will likely be in her system for 3 to 5 hours, the time which may increase along with an increase in dose (something that commonly happens with many meds, i.e. even though the med technically lasts the same length of time at any dose, higher doses tend to last a bit longer than the lower dose). for this reason it may be that when she switches to the 5mg she doesn't "crash" until 4hrs rather than the previous 3.5; this isn't for certain though & it may be that the 3.5hrs remains constant so essentially no need to be surprised either way! re: dose timing, since it takes about 30 min for midodrine to take effect the goal is to take the next dose before the previous dose is able to wear off, i.e. if someone consistently notices a dose wearing off at 3.5 hours then it would make sense to time a second dose at 3 hrs after any previous dose, if the wearing off happens around 4.5 hours then the second dose would best be taken around 4hrs after the previous dose, etc..obviously none if this is an exact science, it varies a bit from person to person, & even in one person it can sometimes change over time, but hopefully some of the extra details may help you both a bit as you're trying to figure out what timing works best.

ramblings over...at least for the night.

congrats on a productive appointment & good luck in the days to come. hopefully you'll notice positive changes soon but remember that they make take time so don't get too discouraged....it certainly sounds that- with the meds & the doctor(s) you're working with - you're headed in the right direction.

melissa

[ajw4790]

Hi,

Just wanted to say that it is good that it looks like that you have found a good, helpful dr. and are getting help with trying different treatments etc. Looks like things are going in the right direction. And Welcome! (if I haven't already said it).

[thericky]

The doctor actually did prescribe 1mg Florinef daily! It seems like that's too much, so Michelle just took 0.4mg for now to see what happens. She was taking .2mg twice a day, so trying that same amount all at once shouldn't be bad. We'll see how she feels. She called the doctor's office and they said he regularly prescribes 1mg Florinef to his patients.

She also has gone up to 5mg Midodrine every 2-4 hours (depending on how she feels), so we'll see how that goes as well.

She woke up feeling relatively good today - hopefully that will continue.

I understand what you're saying about an hour's drive not being that bad... but if we can get the same kind of care 15 minutes away, then that's even better. We'll give it a shot and if we feel that it's too difficult from the other office, we'll gladly drive the hour to see him.

I'll post again tonight to let you know how today went.

[momofsara]

Hooray.. Glad you have a doctor who will work with your wife to find a treatment to make her feel better, also willing to work with you on not having a long drive so often. It can be a real challange to find a good doctor. I'm sure you have read enough on here to find that out.

Anyway, best to your wife and to you. Keep us posted

Susan

[thericky]

Hard to say what's going with everything today. Michelle felt okay most of the day - she was able to walk around, do the dishes, fold some laundry, etc. and only got a little tired. She was taking 5mg of Midodrine every 4 hours, which seemed pretty good... some goosebumps here and there but nothing major.

She also took 0.4mg of Florinef earlier today and then 0.5mg of Florinef a couple hours ago. In the end, it left her feeling somewhat bloated so she's going to back to a smaller dose tomorrow.

Tonight was her first real dinner since leaving the hospital and her body wasn't too happy about it. She had chest pressure, neck ache, and trouble getting a full breath for around an hour after dinner. It's still going on now a little. These are the same symptoms she had before when the Midodrine was wearing off (after 3 - 3.5 hours) but this time it happened just 2 hours after her most recent dose, so we can only guess that the dinner caused her system to get all out of whack.

Not much else to say right now. We're going to give it a few more days on this dosage of Midodrine (and she's wearing the compression stockings).

[thericky]

Hello, This is Michelle (with POTS),

Ok, I just had a major episode of problems. I took my third dose of Midodrine 5mg at 8:30pm (late for most but I stay up late) and I had major problems. When I was eating dinner I got really warm. Then I had some major chest pressure and I couldn't get a full breath of air. I then got a major upset stomach, which caused me to have to "go" several times. Also, I started having some base of the skull to shoulder "pain". It was a lot like when you get a bad headache and you can't move your eyes with out them hurting, only I didn't want to move my head or neck for the same reason. It was the sensation between having a stiff neck and pain. Almost if I could crack my neck it would feel better but that's not what I need. All of this has been going on for the last 2 hours. I still have some neck issues and slight chest pressure. Does anyone else have any similar problems. I know that eating can cause some people to have issues but does any of what I'm going through sound familiar? I'm currently too scared to shower for the evening in fear of making all of these symptoms get worse. I'm ready to pull my hair out but I know that I need to stick with it. I appreciate all of your help that you're giving to me and my husband. It's been a very rough week for us both and we can't express how thankful we are that you are here.

*Hugs*

Michelle

[juliegee]

Hi Michelle-

Nice to see you posting, wish it was under better circumstances. I'm not a doctor, but have been dealing with dysautonomia for a while. I AM VERY CONCERNED ABOUT HOW HIGH YOUR DOSAGE OF FLORINEF IS. I have never heard of anyone taking 1mg. I understood that you took less than that- (.4mg) Thank God, but I think it's no coincidence that your symptoms developed after an additional dosage.

The feeling of pressure and headache could very well be caused by elevated BP, which is a side effect of florinef. I hope you have a BP cuff at home and I would highly encourage you to check your BP often throughout the day. Florinef is best taken in the AM as a single dose as it can prevent sleep if it's taken later in the day. (It has some steroidal properties.) It works by causing your body to retain fluid and boosting your blood volume. It only works if you are also boosting your salt and fluid intake- substantially. At his worst, my son was taking 6 Thermotabs (OTC salt/potassium tablets) a day with his .2mg of florinef (The MAX that his doctor at Johns Hopkins will prescribe.) He took 2 Thermotabs with each meal and he drank tons of water/gatorade throughout the day.

At the dosage you are taking, you have to be very concerned about potassium loss. A potassium imbalance can be life threatening. While my son was titrating up to .2mg, he had weekly blood work (checking potassium) for months until he reached a therapeutic dosage. Once he reached .2mg, he was prescribed a prescription strength potassium supplement called Slow-K-8 to take daily as long as his dose was that high.

I know we are taught to believe in our doctors, but please do the reasearch yourself (on this site or through a google search.) Your florinef dosage is unheard of- and could be extremely dangerous to your health.

Feel better and let us know how you are doing-

Julie

[Broken_Shell]

Hi Michelle,

I am glad to see that you are up to using the computer, but very sorry for what you and Ricky have been going through. I just wanted to share a few things with you. I agree with the other post that suggested that you use a home BP monitor to record your BP both laying and standing, especially when you are symptomatic. You can have various symptoms from both too high and too low of BP, so I would suggest that you check your BP throughout the day, especially when you are having increased symptoms, as well as when you are feeling your best. The Midodrine has its peak effect about one hour after taking it, so this would be a good time to record your BP as well as before your next dose, and about 15 minutes after you eat a meal. I also personally have several symptoms related to eating (mostly wooziness, pressure in my head, and feeling like all the blood in my body is being shifted away from my head towards my GI tract), as I believe many people on this forum do. It is tricky because eating causes a lot of shifts in your body's blood supply and where it is devoting it's "energy" to, along with being a completely autonomic activity. If your autonomic system can't compensate adequately, you can develop a strange set of symptoms. Many of us also have "IBS" - basically lack of consistent and appropriate autonomic regulation of the GI tract. I understand that you were not eating on a regular basis for several days in the hospital. The best suggestions I can make are these: try to start with a bland diet (rice, bananas, apples, egg whites), and eat smaller than usual meals. By eating small meals, you are giving your body less of a "load" to deal with and it should help to decrease some of the blood shift that comes with eating. Have you ever tried liquid nutrition like Boost, Ensure, etc.? They might be worth a try if you are having a hard time with solid food. Just be careful because these products can encourage diarrhea, which it sounds like you are already having a problem with. If you didn't have GI problems before your hospital stay, then it may just be that your body is adjusting to carrying out more autonomic activities with the Midrodrine and Florinef on board, so give it a few days to see how things work out because both of these medications can cause GI upset. If you are still having problems after the weekend, don't hestitate to contact your doctor to see if he has anything to suggest.

Best wishes and hang in there. I hope that you can take it easy and make it through the weekend without any more major episodes. Keep us posted on how you are doing. I hope that you will find a lot of support on the forum.

Hugs ~ Broken Shell

[Miriam Poorman-Knox]

Welcome,

Everyone is different. I started Florinef .1mg and for awhile was at 2. Its dangerous to say that this is unheard of unless you understand the persons physiology. Years later its still at 1. M

[EarthMother]

Lots of sage advice here ...

My not so medical observances based on my crash last summer ....

The weeks after the hospital were the hardest. It just wiped out my system and raised more questions than answers. So much of what I needed to do was settle into the cycles and waves that followed.

I also had to do very light meals. But they also had to be complex carb, high protein and fat. So whole grain toast with real butter and a slice of cheese worked well for me. Then I'd eat again in 2-3 hours, perhaps nutbutter, rye crisp and some soymilk. etc. Keep a food and symptom diary for a few weeks. I was also checking my blood sugar regularly throughout the day since I was still getting wicked lows.

I also get tremendous pain in the back of my neck and shoulders. And most of my symptoms still are at their worst after eating. For the coat hanger pain, I find what really works are some hot packs my husband can nuke for me in the micro. Which seems counterintuitive because I am usually also having a hot flash! But the spot on heat on the back of the neck really helps...for me.

Lastly ... welcome to the forum Michele. I know this is the last place you want to be and wished you never had to experience all of this &%$%#@&&*!!@#! ... but when you find yourself at the bottom of a POTS hole, well its nice to meet people who have been there and understand ... and even some who have crawled out and lead somewhat normal and often fullfilling lives.

Good luck to you on your healing journey.

Salubrious.

~EM

[juliegee]

Welcome,

Everyone is different. I started Florinef .1mg and for awhile was at 2. Its dangerous to say that this is unheard of unless you understand the persons physiology. Years later its still at 1. M

Let me start by saying, I hope Michelle's OK and doing better today. Thanks for that info, Miriam. THAT dosage was unheard of by me until just now. Wow. I'm glad that works for you. I know that you titrated slowly, and had your potassium carefully measured while finding your therapeutic dosage, and still check it regularly. Something Michelle was doing wasn'tworking for her and I worried it may have been the florinef.

All of the medical literature that I've read will bear out my cautions. In their primer for instructing other physicians, The Autonomic Nervous System, Drs. Appenzellar, Vinker, and Bruyn recommend going no higher than .3mg and have MUCH stronger warnings than I do for higher dosages, including fluid overload, congestive heart failure, severe supine hypertension, and hypokalaemia. Paste this into your browser to learn more.

http://books.google.com/books?id=3kw0gwdYX...F+FLORINEF,+1MG

Dr. Peter Rowe at Johns Hopkins won't go higher than .2mg. I'm just a Mom and patient dealing with dysautonomia, not a doctor. I hope my warnings weren't so much dangerous as misplaced. I feel that it's better to be safe rather than sorry with a med that can have such potentially dangerous side effects.

Thanks for sharing your experience-

Julie

Julie

[all4family]

Hi Ricky, and Michelle,

I just wanted to say hi. Sorry I didn't say hi sooner, been having some problems of my own. Michelle, I can really relate to what you are saying with the chest pain after you eat, and not being able to breath. Although I am not on florinef, or midodrine so I don't know anything there, but I have had problems with many other medications. I am finding that either if I haven't ate, or if I have ate sometimes, that I am having a lot of chest pain, and difficulty breathing. If I haven't ate and I can eat it usually helps. If I have ate, then changing my position, and burping seems to help a little. I used to throw up all day, and the only way I was able to stop that was to eat my meals laying down. (I know everything against what conventional stuff will tell you.) I have had a special CT scan, and for the life of me can't remember the name of it, but it was to rule out sarcoidosis. Well they didn't find any sarcoidosis, but they did find that I have a dialated esophogus, which I understand is caused by GI dysmotility. Have you had any GI tests done? I am not certain, and I sure feel like it has more to do with my lungs, when I can't breath, but it may be related to the GI stuff. I also relate with the neck stiffness. I get all over chest to head stiffness. And many of my bones, especially my neck feel like cracking, and actually do. I do get relief most of the time when they crack, but sometimes have other problems that pop up. I really understand how you feel not wanting to shower because you don't want anything to get worse. I have avoided almost anything that made me feel worse in the name of feeling ok just for a bitl So sorry for what you are going through. I know it is so hard. I am real glad to hear that you have found a good doctor. I wish you all the best of luck with that. I hope things settle down for you real soon. Take care.

Healing Hugs

Suzy

[Poohbear]

Ask your Dr but I don't think you should drastically increase your sodium intake if you are taking Florinef----you will be doing "double duty" (so to speak). But, your Dr should be closely monitoring potassium levels while you are on Florinef. I would imagine since you were just in the hospital that they know your potassium levels are ok and it's too soon to check since you just started taking Florinef.

Also, FYI, Dr. Rowe that Mack's Mom talks about specializes in pediatric cases and the majority of Dr. Rowe's work and advice is for pediatric population which is sometimes very different than what works for adults. There are some adult patients who need higher doses of Florinef.

Having said all of that....it sounds like your symptoms were worse after eating and not necessarily tied to the midodrine or the florinef. I have had many episodes like you describe after eating. It could be medication or it could be eating or it could be a combination of the two or some other factors. Many people are troubled with exaccerbation of symptoms after eating....blood rushes to the stomach to digest food which pulls it away from your head. You could also have some orthostatic hypotension or orthostatic hypertension going on after meals.

Michelle, please do ask your Dr about using Midodrine and Florinef together. The PDR does show potential drug interactions with these two meds. Specifically it states, "Fludrocortisone/ increase risk of supine hypertension, intraocular pressure and glaucoma" (this is in reference to taking the two drugs at the same time).

Meanwhile, try eat smaller portions --some say 6 small meals a day. Keep a food diary if you can so that maybe you can see "trends". Some people have food insensitivities that bring on symptoms, some are sensitive to too many carbs, some people tolerate food earlier in the day but not later, some tolerate food better later in the day but not earlier----it can really be a HUGE range of things that happen. If you can keep track of all these logs for a few weeks you might start to figure out what works or doesn't work FOR YOU.

If possible, only try one treatment at a time so that you can better sort out what is causing what.

Best of luck!

[juliegee]

"Also, FYI, Dr. Rowe that Mack's Mom talks about specializes in pediatric cases and the majority of Dr. Rowe's work and advice is for pediatric population which is sometimes very different than what works for adults. There are some adult patients who need higher doses of Florinef."

Good point, Poohbear. I thought about that, BUT the vast majority (if not all) of patients that he follows are teens. My son is 165lbs. My son is one of 100 patients that Dr. Rowe manages. The way he explained the operation of florinef to us is that extra salt and fluids are mandatory for florinef to work. Extra salt with florinef isn't "double duty." Supposedly florinef holds the extra fluid in, boosting blood volume, but it doesn't work without extra salt.

I have further questions about florinef dosing, but I will move that to a new topic as I don't want to hijack this thread. I am worried about Michelle and want to focus on her here.

Julie

[Miriam Poorman-Knox]

Hi I erred in response to the florinef dose. I was at the beginning on 1 mg and have worked my way down to the .... Sorry. M

[delphicdragon]

Hello Michelle and Ricky-

Welcome to the board. Ricky, you're amazing in how you take care of your wife! Michelle, I hope this post finds you feeling better.

It's quite common, at least for me, to get symptomatic after eating. I find that eating small meals helps a lot, and they need to be balanced meals as well. I like to joke that I eat like the Hobbits in Lord of the Rings (Breakfast, Second Breakfast, Brunch, Lunch, Afternoon tea, Supper, Dinner, etc) That has been the biggest help for me. I used to trigger after supper because it was a big meal, with feelings of heat, nausea, diarrhea, tachy, etc. It wasn't pleasant. Sadly, this type of reaction is normal for a lot of us on the board.

Doing too much can also trigger the stomach "attack" that you described. I know you may be feeling better on some new medications, but still take it slow. Overdoing can put you right back into the POTS hole. Maybe just wash up and skip the shower? Standing for a while in heat does trigger POTS for me, and after a stomach attack I'm very sensitive to ANYTHING for a couple hours.

I can't give advice about Florinef because I can't tolerate it. I'm strange in that Sudafed helps me by tricking my heart into thinking it needs to beat slower. Most people can't tolerate Sudafed, but are ok with Florinef. I was swelling up very badly on Florinef and that's a troublesome (and I've been told dangerous) side effect, so be careful about that. If you're on a high dose it's helpful to monitor your weight so that you can modify your dose if you gain too much water weight.

Take care (both of you) and feel better soon!

Sara

[Sunfish]

poohbear, michelle, et al -

re: the use of florinef & midodrine together, i know of at least 5 of the top autonomic specialists who regularly prescribe the two meds together. the pdr warning is solely based on the fact that both meds can (& generally will) raise blood pressure; while this is obviously something that should be monitored so that it doesn't get out-of-hand, dangerous, etc., those who are being prescribed both meds by the autonomic docs are often in NEED of this duplicate/ double effect, so to speak (aka concurrent but different approaches/ methods to raising BP). i took both meds myself for years.

that said, i am a big proponent of adjusting meds (whether starting, stopping, or changing dosing in any way) one at a time b/c - as pooh mentioned - this makes it much easier to have some idea what is doing what (be it something good or bad). that said, during acute flare-ups - hospitalizations certainly qualifying under this category - many things are often done at once, at which point you must simply do your best to sort things out from what you're working with. i remember years & years ago - at my first appt with dr. grubb in fact - that he specifically wanted me to start on two things right then & there b/c of the degree to which i was "crashed". in the more than 11 years since then we've always taken the "one at a time" approach (barring of course life-threatening hospitalizations) but i guess i just wanted to throw out the fact that, while "one at a time" is generally best, there are occasions when the health situation might warrant a more heavy-handed approach. i realize that everyone would know this in extreme/ life-threatening situations so don't mean to insult by implying than anyone wouldn't know that much!!! more relevantly perhaps was/ is my mentioning an office setting wherein an autonomic doc - who usually is big on "one at a time" - specifically wanted me to start two meds at once (which, perhaps coincidentally, also happened to be florinef & midodrine...way nack then!)

that said, it is still probably a great idea to try to make only one change at time moving forward, i.e. changes in dosing & the like.

hope this helps,

melissa

p.s. since it's only been via your hubby until now, let me offer a welcome directly to you as well! keep on keeping on & hang in the best you can in the mean time.

[erikainorlando]

Hi Ricky and Michelle,

Sorry you all have been going through so much. Although I am glad to hear you are here in Florida!! I also live in Orlando. I have recently been diagnosed with POTS...after about 6 months of being soooo sick with no answers.

Anyway, can you tell me whihc doctor here in Orlando you are going to that has been helpful? Also, the name of the facility that does ANS testing in Stuart? At this point I wil go anywhere.

Thanks!!

Erika

[thericky]

Sorry everyone for not posting in a few days. There really isn't all that much to say.

I do have a few new questions for all of you, which I've bolded below.

We visited the doctor again last week and decided to try Michelle on Ritalin. So far, it doesn't appear to be doing much of anything. Bad side effects on day one but those have since gone away completely. She's considering not taking Midodrine for a day or two just to see if Ritalin could potentially be a less expensive substitute. I doubt it'll work but it's worth a shot.

Does anyone here take Ritalin in place of Midodrine?

I finally purchased a blood pressure / heart rate meter so we could document what's going on with Michelle. We've tried a number of scenarios and, so far, the results seem to be that the Midodrine/Florinef combo is definitely raising her blood pressure and lowering her heart rate a little, which is good, but it's not working enough. Her heart rate is 140-150 without the medicine and 90-120 with the medicine (usually around 110). Blood pressure is pretty normal while on the medicine.

Michelle has been wearing her waist-high compression stockings, but we've taken her BP and HR with and without them and they don't seem to be helping at all. We'll keep trying for now.

In addition, the Midodrine/Florinef combo isn't helping the severity of her high heart rate. On Toprol XL, her heart would get fast but wouldn't throb as much as with the current meds. And Toprol XL still wasn't a cure by any means... but it was better.

So here are my most important questions today:

- In general, is it possible that we're focusing too much on blood pressure and heart rate and not considering some other biological oddity that's going on with her?

All doctors seem to do when we visit is take her BP and HR and very rarely test anything else. They're pretty focused on the idea that her low blood pressure is the cause of her high heart rate. However, from what we've found using the BP/HR meter, even when her blood pressure is normal, her heart rate is still very high.

So is there something else we could be testing for that would be the cause of her increase heart rate?

- Also, does anyone here take Toprol XL with Midodrine and Florinef? The doctors keep saying that taking a beta blocker goes against the physiology of what's happening with her body, but so far it's the only thing that has made her feel somewhat better. Would there be anything wrong with using Midodrine/Florinef to raise her blood pressure in conjunction with Toprol XL to lower her heart rate?

- Finally, just curious, for those of you that take Toprol, how much do you take? Michelle was up to 50mg twice a day and it was helping her get around the house (but not helping enough to get her OUT of the house).

Thanks, as always.

And Erika - While I'm not glad to hear that you have POTS, it is nice to know that there's someone in Orlando other than my wife that has it. I will private message you with answers to your questions.

[Ernie]

Hi,

You could test the beta receptors of the heart to see if they overeact.

[Miriam Poorman-Knox]

Yes I do tAKe ritalin 20 mg SR. and metoperol and florinef, inderal LA. The thing is that this is not predictable. And they take time sometimes years to finally get on board with the right combo. (I would like a #2 w/ friesLOL). M

[Broken_Shell]

Hi Ricky,

I am sorry to hear that you and Michelle are still struggling, but I am glad to hear that you are still trying new things and asking questions. Just a few thoughts on your questions...

Although Ritalin does increase blood pressure, it can have a lot of side effects that midodrine doesn't normally have - i.e. increased HR (definately not something that you want!), lack of appetite, insomnia, anxiety, etc. I would not reccommend considering using Ritalin in this situation unless the midodrine is not keeping her blood pressure up or causing intolerable side effects.

I don't take a combo of midodrine/florinef/toprol XL, but I don't see a problem with using them in combination. The midodrine constricts the blood vessels to increase BP, while the florinef increases blood volume through salt and fluid retention, and toprol XL works directly on the heart to decrease HR. The mechanisms by which these medications work don't interfere with one another, so I would suggest talking to your doctor to get his opinion.

Finally, regarding other reasons for the heart rate elevation - has she had a through endocrine and cardiac work-up beyond HR/BP/autonomic testing? The elevation in HR can also be an autonomic dysfunction in and of itself regardless of the actual blood pressure. This is where adding back the Toprol XL might provide some real benefit.

Good luck and keep us posted.

~ Broken_Shell

[Miriam Poorman-Knox]

Broken shell just made me think. Michele do you have hashimotos or thyroid problems? thats pretty common and causes the same problems. Miriam

[delphicdragon]

Does anyone here take Ritalin in place of Midodrine?

I do take Sudafed in place of Midodrine. Make sure it's the real stuff (behind the counter) not the phenylephedrine. It works well for when when I'm having a POTSy day, but not so much for the attacks. Ritalin was recommended to me as well, but we thought we'd try Sudafed first as it's OTC and I've taken it before.

Like your wife, my heart rate is always high. For me the Sudafed tricks my heart into thinking it's beating too fast and then it slows it down (completely the opposite of what Sudafed normally does)

Good luck to you.

Sara

[juliegee]

Good to hear from you, Ricky. Sorry things aren't better. I, too, am concerned with the use of ritalin for Michelle. It's notorious for raising HR- definately not something that Michelle needs right now. My son uses a type of stimulant, called Concerta (very similiar), but his HR is as low as 30BPM. (His BP drops out throughout the day. He's also on florinef.) With Michelle's extremely fast HR, I'd be VERY careful with any stimulant type med.

Out of curiousity, what dosage of florinef did Michelle settle on? I'm glad it's not raising her BP too much.

As far as another cause for all of this- HAVE HER DOCTORS CONSIDERED AN ALLERGIC REACTION??? When I have one, my BP is very low, HR crazy fast. I also flush, sometimes gets hives, have trouble eating, and the bottom of my feet burn. At different times, I have trouble swallowing and my chest feels tight. I don't necessarily have all of these symptoms at the same time so it was initially tricky separating this from purely autonomic issues.

All the best-

Julie