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wishful thinking??? and an update


Nicole's Mom
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I'm doubting that this exists and I know it's a shot in the dark but I thought I should ask. Have any of you in your dealings with your various (maveric) POTS docs learned of another drug similar to the way Florinef works? Like a Florinef clone -so to speak? At first Florinef worked great for Nicole- it was amazing how one pill could take her from three and a half months of laying down with a zillion symptoms and no dx to up on her feet and very ambulatory with 75% reduced symptoms. Anyway after 8 years of being on Florinef and tapering down when she felt better and then having to climb higher and higher with each relapse - now she is on 4 Florinef it doesn't seem to be effective at all.

Presently Nicole is about maybe about 15% improved from when I first posted on this forum 3 weeks ago which we could possibly attribute to the week of IV saline, increased salt intake (thank you all for the repeated increased salt suggestions) rest, and time. Also Klonapin seems to be helping her nervous system to be somewhat less haywire which in turn might be giving her body some kind of break thus allowing it to heal. She still, however, is bedridden.

Plus since she stopped the IV saline the adrenaline-y feeling came back but not as bad as before but still lousy. We thought at first the Klonapin was completely responsible for the reduced adrenaline-y feeling but then when she got on the IV saline that wired feeling seemed to really abate- it was a major relief for her to have that gone. But now it's back and seemed to have returned on the heels of finishing the saline. It's a symptom that she finds most intolerable - the wired yet tired thing. We, of course, cannot be positive that the saline was indeed responsible for the abatement of the adrenaline-y feeling. Nicole, however, might like to try another few days of saline to see if the adrenaline-y feeling abates again IF her local doc will allow it. She's already asked him by telephone and he is maybe considering it for maybe next week. At the very least another saline "trial" will provide her some "information" while maybe giving her body another rest from overcompensating in a zillion, crazy ways and thus perhaps ultimately provide her some extra ground and even if it's only a little ground more she'll take it gladly.

She's also considering a beta blocker after what all of you said about how it's helped you. There certainly are many choices. For that we'd contact her neurologist to see if he'll recommend one for Nicole.

Thank you,

Beverly

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One of my docs had be take liccorice prior to putting me on florinef. I didn't do as well on it as I did on florinef. My NIH doctor told me there are "florinef responders" and then the rest of us. I happen to be an exceptionally good responder. It's possible to clean one's system out of a medication and retry it again later to see if you can duplicate the effects. Oddly, when I tried that with florinef, my body repsonded TOO much--shot my bp through the roof.

Nina ;)

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I don't know if Nicole has low blood pressure, but In order to combat my low blood pressure/low volume, I took licorice root (3,000-5,00mg) day and Ashwagandha (an ayurvedic herb for stress/energy/lowblood pressure) for about 6 weeks. I then tapered off the licorice root and now only take the Ashwagandha. And of course I still do plenty of fluids and Celtic sea salt. As with all herbs, you have to be patient as they aren't as fast acting as presc. medicines. And as you know everyone responds differently to meds, herbs, etc. I have a prescription of florinef but have not started taking it. I'm trying to go med free as long as possible! ;) I will certainly keep Nicole in my prayers and hope that she finds relief soon. She may also want to try the compression hose if she hasn't already. Best wishes.

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Ernie, thank you for your suggestion. Nicole has tried licorice - sometimes she adds it into her regimen. She has never taken only licorice. In fact she was taking licorice on top of the florinef just recently but stopped it because it was spiking her blood pressure too high. She does not take salt tablets but she uses salt water. If you wish to read below about her salt intake. ( I rambled on a bit in this post)

Nina, thank you also for your imput. Here and there Nicole has tapered down on the Florinef and I know she has at least tapered down to 1/2 pill and later today I will ask her if she has ever tapered off entirely. Maybe cleaning her body out entirely and then trying it again could be useful. Yet sometimes I wonder if she had just stayed on that initial one pill and did not taper off - maybe she would have not had a relapse and then another, etc. I read a post once here that someone had to go off their florinef to do some testing in a hospital setting and when she went back on the florinef it didn't work anymore.

Nina you are so fortunate to be a good florinef responder. Have you always stayed on the same dose without changing it- like not tapering down? I knew someone with POTS who never changed anything that she did and never relapsed- her condition barely wavered. I have lost touch with her- I knew her for about two years. But without fail she took two florinef each day, took salt tablets each day even though she had to gag them down, and once a week she had IV saline at home. Knowing what I knew of her - not ever wanting to toy with what worked I wouldn't be surprised if she was still sticking to this exact regimen.

Florinef is not totally INeffective across the board for Nicole. It seems to be rather ineffective for the hypovemia - but it keeps her blood pressure up - sometimes it's okay high but sometimes too high even though that seems to be a contradiction according to my nurse friend- the low fluid and the hypertension but without the florinef Nicole's blood pressure would seriously drop.

Because of all the salt and florinef Nicole is monitoring her blood pressure regularly and today I bought her a monitor that is automatic and easier to use.

Nicole was in really bad shape just 4 weeks ago but she is coming along slowly but surely. It is because of this fantastic website and all the salt suggestions (cannot express my gratitude enough) that Nicole has increased her salt and she thinks that this extra salt might be helping her hypovolemia.

Now that I think about I am wondering if perhaps Nicole is one of those who needs a great, great high dose of salt to make the Florinef work better.

Plus someone else suggested that salt is more effective when taken with food and Nicole has noticed that if she eats a good bit of food late at night and drinks the salt water with it when she wakes up her morning she is better than if she doesn't do this routine. (What prevents her from eating is when the adrenaline-y feeling is awful- she can hardly eat. When you think about it people use adrenaline to suppress their appetites).

Anyway I have gone on long enough-for now.

Thank you again for your imput,

Beverly

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Thank you Gena for your reply and for your best wishes and prayers. This has been such a difficult time for her. The salt water Nicole drinks is made with Celtic salt as is what she adds to her food. Nicole's problem presently is a constant battle to keep fluid to stay in her. Licorice is something that she has used.

Beverly

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I was only on .1 mg once a day for about 5 years. I had to stop taking it for a few tests I was scheduld for--and when I tried to start up again, even tapering up, half a pill sent my bp through the roof.

Nina

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I am glad to hear that Nicole has made some progress in the last few weeks.

I just wanted to make a comment about Florinef and the adrenaline surges. I know it is not true for all/most but I found that the Florinef kept my body "wired", even on low doses. I was on it for 3 years beginning with 2 full tablets and working my way down to 1/2. WIth any stimulation my BP would soar to the point that I was staying away from going anywhere. In Feb, with my doctors consent, I went off it and within 3 weeks my body was SO much calmer. I still am over stimulated easily but since my bp is lower, when it jumps it is still at an OK level.

It is very hard to manage hypovolemia without a drug like Florinef -- and I don't use salt tablets -- but it is worth it to me. I start every morning with 20 ounces of salted water BEFORE I get out of bed in the morning and continue drinking all day with at least 16 ounces of gatorade diluted and salted. The hardest part is to never get behind. One round of diarrhea and it take me several days to catch up. I agree with Nicole and others. Salted drinks are good, but salted foods are even more effective.

I have never hear of another med that does the same as Florinef but if there was one I might try it. Florinef just really caused me a lot of side effects. I would be 10 times more dizzy on the higher doses. It is all a trade off of what symptoms will be better and which worse when we try all these meds -- soooo confusing!

all the best to Nicole.

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Geneva,

Geneva, Thank you for your response: I have a few questions for you if you don't mind.

" I start every morning with 20 ounces of salted water BEFORE I get out of bed in the morning and continue drinking all day with at least 16 ounces of gatorade diluted and salted."

Approximately how much salt do you put into the 20 ounces of water? And when you drink all day long - the diluted gatorade- how much do you dilute it- how much liquid do you end up with? Do you drink anything else besides the initial 20 oz. and the diluted gatorade?

Nicole drinks water all day because she is so thirsty. I can tell when she is getting better because the thirst begins to abate. She is really putting the salt down lately and it seems that it is paying off. She is drinking chicken broth too and now began adding miso which she says is really salty. It seems to be so important. It should be obvious that salt makes you retain water but when there are so many systems awry it's hard to sort it all out. I don't recall anyone "medical" ever telling her to take salt as part of her regimen. I am so grateful for this website and everyone who has spoken so much about the importance of salt because she really does seem to be moving forward, albeit slowly, from that "grave" state she was in just four weeks ago.

I will pass onto Nicole your validating words about the salt and the food.

That is very interesting what you say about Florinef and being wired from it. What happened to you when you went off of it? Do you think all your salt intake compensated for the lack of Florinef? Are you managing at the same level? Are you doing okay? It sounds like you are less dizzy.

Thanks again

Take care,

Beverly

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In answer to your questions, I really don't know the exact amount I put into each 24 ounce of water. I just turn the salt shaker over and pour! After a while I just know by the taste. Sorry I am not more specific.

At night I prepare 2- 24 ounce bottles of water with salt. I also take a 20 ounce bottle of gatorade - pour about 6 ounces out in to another empty bottle and replace with water and then add salt. So the original 20 ounce bottle of gatorade has about 14 ounces gatorade, and 6 water plus salt. I also take the 6 ounces of gatorade which I removed, add water, and salt.

On an average day I drink 48 ounces of water, 20 ounces of the diluted gatorade and 10 to 20 ounces of broth. My total fluid is usually between 64 and 84 with at least 40 in the first 4 hours when I get up. I have found for me that it is best not to leave home before I have at least 40 ounces of fluids.

I had tried going off gatorade because the sugar was a problem for me but found I really needed it. Too much water and I just deplete electrolytes. Someone on here suggested diluting the gatorade and it works well for me.

I have been ill for 4 years and have been drinking high salted fluids from the onset but when I went off Florinef I just became more vigilant about the numbers. Managing hypovolemia for me is a all day affair -- before and after Florinef. Because I had been reducing my Florinef over a long period of time, I was down to only 1/2 a pill a day before I went off. Nothing different happened overnite but with time my bp dropped and I have to monitor closely. but the wild bp swings up and down I had so often have been reduced and that is a blessing.

I just feel better off Florinef but of course in the beginning I needed it. Everyone is so differnt with meds and for some it is a great drug. I was fortunate that I was able to go off it after 3 years but am realistic enough to know that I might need it again in the future. Hope this answers your questions!!

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I could not tolerate the Florinef at all. My blood pressure was crazy high and unstable. I am a "volume depleter" also and must drink lots of fluids during the day. I found that drinking 16 ounces of Propel when I first wake up (some people drink fluids before getting out of bed) does help a lot. I know that I usaully drink 48 ounces combined fluids BEFORE lunch. I am also taking a low dose of neurontin (100 mg 1-3 times a day) and I don't know why but is seems to stabilize me ever so slightly. I never tried the Klonipen but I know it is prescribed frequently. They are both anti-seizure drugs so may have similar effects. I know that my condition is continually changing --I can feel good and bad in the same hour--there is no homeostsis. I am constantly trying to remember what I did to make myself feel better and repeat it. Sometimes it will help but other times it doesn't seem to matter what I try--I am dizzy and need to lie down. The mornings are the worst and I am exhausted by the afternoon and need to nap. If I attempt to have what I would in the past call a "normal" day I pay for it the next. Exercise at your tolerance level helps as much as anything. Hope Nicole feels better soon.

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No, I'm not on florinef -- even a little of it sends my bp out of control at this point. This condition can be really frustrating at times; what worked before stops, or works too well, or does the reverse. My doctor and I just sometimes have to shrug together and give a communal sigh of "what the heck???".

nina

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1. I'm so sorry that you are unable to take florinef- it worked so well for Nicole and now it is ineffective and as a mother watching my daughter suffer I must admit I find this so frustrating -that there are no drugs similar to try. People with other conditions like high cholesterol or glaucoma (my husband has both) have choices when the one they are on becomes ineffective. This happened to my husband and his eye drops. The ones he was using weren't working anymore after 3 years and the pressure had built back up in his eyes- very bad- but luckily he could try another eye drop and now his eye pressure is very good. Anyway that's just venting about the lack of florinef like drugs. But meanwhile my first question to you is this: without florinef in your life how do you manage to compensate for the loss of that drug?

2. I see you have dealt with dyautonomia in more than one way. Does this mean that you were born with it i.e. are there are others in your family who also have dysautonomia?

3-4. I went to your website and studied your beautiful flowers. Being a gardener myself who loves to admire the gardens of others I can recognize works of love when I see them. Your works of love are truly gorgeous. You must get a wonderful, spiritual uplift from creating such beauty. I also noticed that you work better when the weather is cooler- makes sense for sure. I've also read that you are working on your PhD. How do manage to pace yourself? And do you have ups and downs?

Beverly

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Dear Beverly,

I was on florinef for a few months when I first got sick, I just felt so wired I couldn't handle it. My bp didn't go up, I just felt really wired. I stopped and felt better in about 3 weeks. I haven't been on it since. I may have to try again as I am still "craching" and I am trying to stay away from being bed ridden. I have to see my cardio Tuesday and hopefully we can come up with somethig that will help. I'll ask if there are any alternatives to the florinef, I've only ever heard of the licorice root. I also drink salted liquids, my fav is beef broth. For a change, I add potatoe flakes and onion/garlic salts (it's good on taost too). I now how hard it is to eat when your "wired" but at least try to drink. I have two 32 oz. mugs I fill every night, they are gone by morning. I fill one up about 6 times a day. I don't use gatorade unless I'm not eating at all, then I dilute by half and add about 3 tablespoons of salt to about 32 ozs. I don't use salt tabs or drink just salty water, I can't stomach it :) !! I heavely salt most of my meals, meat/meat substities, veges, ect. I even make a butter mix, onion, garlic, dried parsley, salt and sometimes parmasion cheese, I even have this on my morning toast.

Good luck, I'll write after I see my doc on Tuesday.

Blackwolf

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