Anything like florinef?

[CallieAndToby]

I second the recommendation to test for diabetes insipidus if you find yourself urinating copiously. It does seem to be pretty common in HPA dysfunction.

What side effects did you get with Florinef? 6 salt tabs is a really low amount, quite honestly. I know people that take 3-4x that to keep sodium up while on Florinef. Florinef is also a potassium wasting drug. Were you also taking slow release potassium with it? Since it helped at first, I wonder if some of the side effects could be managed by better electrolyte supplementation?

There is also a bio-identical aldosterone that is available from a very few compounding pharmacies that might be an option for you.

I think that there is a mast cell component to IC as well as a hormonal aspect. I know a few people have had good luck with the Algonot product Cystoprotek for IC.

Well when I take it, makes me very very tired. Which makes sense, it does lower my heart rate, I'm not running on adrenaline, and when the adrenaline stops I feel hella bad, really bad. So I can't take it in the morning.

Now at first it was helping at night. I cut the smallest dose in 4th's and took 1/4th. I was sleeping better and not waking up, sleeping through the night. After awhile though I started feeling stimulated and the feeling that I hadn't slept, the non-restorativeness got much much worse. I was waking up much more sleepy so I didn't know what to do. I am extremely sensitive to medication, Dr. Rey said one of the worse she's seen in this regards.

I've only seen my dys. specialist 2x's but am planning on seeing him this summer and discussing all of this with him. Certainly calming down all this adrenaline will help my sleep.

 

[CallieAndToby]

Callie,

check out this thread, "Observations That May Help Someone" Discussion in 'General Treatment' started by xks201, Oct 6, 2012.

http://forums.phoenixrising.me/inde...ions-that-may-help-someone.19747/#post-302757

there is a discussion of desmopressin, etc.

Thanks.

Also, I had some all natural coconut drink with extra electrolytes and that helped and tasted good, is expensive.

 

[CallieAndToby]

Took it the last couple of nights. Stimulates me, but not where I can get up and do things, I just lie in bed unable to sleep with my heart racing. Beta blocker was not able to counter act this reaction. I've been stimulated all day as well. Took 1/4 of the smallest dose. Tried to wear myself out, still cannot relax. Friend is has extreme sensitivities also had the same reaction. Bummer.

 

[MishMash]

CallieAndToby

I feel so bad for you. You seem like you've tried everything and you still feel so sick.

Can I make a suggestion that is a little outside the box? Have you ever considered you have too much brain fluid pressure?

Basically, there is a condition where the fluid inside the cranium squeezes the brain, causing headaches, visual disturbances, neck pains in the cervical area and shoulders, and other symptoms. Sometimes people will have chronically clogged ears or sometimes clear liquid running out of the nose. People have it from birth, but it only manifests itself after puberty (or thereabouts) http://en.wikipedia.org/wiki/Pseudotumor_cerebri

You might ask "why would a person have too much brain fluid pressure?" The reason is that many people have mal-formed or narrowed ducts carrying around the cerebral spinal fluid. So the fluid gets trapped in the cranium. This might be related to genetically weak or floppy tissue structures (I don't know if you or anybody in your family has hypermobile joints or stretchy tissues). The ducts don't stay open because they are flimsy, weak.

And many times the high pressure in the cranium will squash the pituitary gland completely flat. In all you tests, has anybody ever examined the shape of your pituitary? The condition is called Empty Sella Syndrome, because the pituitary capsule looks empty.

I only make this suggestion because idiopathic intracranial hypertension (IIH) is not unusual or strange at all. In fact, Cort, the former owner of this website himself had it, and the doctor told him he had IIH also. He wrote that he had a lumbar puncture and actually felt better for a few days after. http://phoenixrising.me/archives/2127 He wrote a feature article about it in 2011, and many patients posted that they had it. It seems to be co-morbid quite frequently with ME/CFS.

IIH and Empty Sella Syndrome is actually becoming more common, and it is especially common among young girls, many of whom are obese. I believe the obesity comes as a result of the screwed up HPA axis and hormones, and not the body fat squishing the brain fluid (as some numbskull docs are saying).

But the important thing is that your brain is under unusually high pressure, and this can cause all kinds of immunological and neurological reactions in the body. They might be causing the anxiety, insomnia, dysautomonia that you have. It also opens the doors for all kinds of CFS-related disorders; and interstitial cystitis is definintely on that list.

The best part about high brain fluid pressure as a diagnosis is that you simply have to get your doc to give you prescription for Diamox, a very common diuretic. It is prescribed for glaucoma patients, because they have too much pressure in their eyeballs, and the Diamox dries out some of the over-pressure.

Diamox only becomes a problem if you take it long term, then I think it causes Potassium depletion. Otherwise it is dirt cheap, and completely safe. Like any drug, as a CFS patient you might want to start with a very low dose and see what happens. If it does not work or doesn't agree with you haven't spent thousands of dollars.

BTW people who have IIH have terrible reactions to Florinef and stimulants. Stimulants and more fluid pressure are exactly what IIH patients do not need. I had a horrible reaction from Florinef. I suspect many of us have screwed adrenals, possibly from IIH in the brain.

The studies in Pubmed tend to focus on the prevalence of IIH in obese women. But anybody can get it, and it is probably associated with ME/CFS like symptoms.

http://www.ncbi.nlm.nih.gov/pubmed/23136035
http://www.ncbi.nlm.nih.gov/pubmed/22423118
http://www.ncbi.nlm.nih.gov/pubmed/23165338

 

[taniaaust1]

Well when I take it, makes me very very tired. Which makes sense, it does lower my heart rate, I'm not running on adrenaline, and when the adrenaline stops I feel hella bad, really bad. So I can't take it in the morning.

Now at first it was helping at night. I cut the smallest dose in 4th's and took 1/4th. I was sleeping better and not waking up, sleeping through the night. After awhile though I started feeling stimulated and the feeling that I hadn't slept, the non-restorativeness got much much worse. I was waking up much more sleepy so I didn't know what to do. I am extremely sensitive to medication, Dr. Rey said one of the worse she's seen in this regards.

I've only seen my dys. specialist 2x's but am planning on seeing him this summer and discussing all of this with him. Certainly calming down all this adrenaline will help my sleep.

Ive found clonidine great for helping my abnormal adrenaline levels (I take half a pill, I didnt notice any effects with quarter of a pill) .. this drug is also being used off label for sleep issues too. If your adrenaline is abnormally high.. it may be something to consider.

 

[August59]

I second the recommendation to test for diabetes insipidus if you find yourself urinating copiously. It does seem to be pretty common in HPA dysfunction.

What side effects did you get with Florinef? 6 salt tabs is a really low amount, quite honestly. I know people that take 3-4x that to keep sodium up while on Florinef. Florinef is also a potassium wasting drug. Were you also taking slow release potassium with it? Since it helped at first, I wonder if some of the side effects could be managed by better electrolyte supplementation?

There is also a bio-identical aldosterone that is available from a very few compounding pharmacies that might be an option for you.

I think that there is a mast cell component to IC as well as a hormonal aspect. I know a few people have had good luck with the Algonot product Cystoprotek for IC.

Not sure of in the US, but there is a compounding pharmacy in Canada that makes a bioidentiacl transdermal aldosterone.

I became interested in it because evidently aldosterone has a big impact on fluid levels in the inner ear. Someone people have had their hearing returned to normal levels with the transdermal aldosterone. They could not get any other meds to work, but I can geuss that the inner ear is very sensitive. I belive there was laso some relief from vertigo, but not sure

 

[CallieAndToby]

CallieAndToby

I feel so bad for you. You seem like you've tried everything and you still feel so sick.

Can I make a suggestion that is a little outside the box? Have you ever considered you have too much brain fluid pressure?

Basically, there is a condition where the fluid inside the cranium squeezes the brain, causing headaches, visual disturbances, neck pains in the cervical area and shoulders, and other symptoms. Sometimes people will have chronically clogged ears or sometimes clear liquid running out of the nose. People have it from birth, but it only manifests itself after puberty (or thereabouts) http://en.wikipedia.org/wiki/Pseudotumor_cerebri

You might ask "why would a person have too much brain fluid pressure?" The reason is that many people have mal-formed or narrowed ducts carrying around the cerebral spinal fluid. So the fluid gets trapped in the cranium. This might be related to genetically weak or floppy tissue structures (I don't know if you or anybody in your family has hypermobile joints or stretchy tissues). The ducts don't stay open because they are flimsy, weak.

And many times the high pressure in the cranium will squash the pituitary gland completely flat. In all you tests, has anybody ever examined the shape of your pituitary? The condition is called Empty Sella Syndrome, because the pituitary capsule looks empty.

I only make this suggestion because idiopathic intracranial hypertension (IIH) is not unusual or strange at all. In fact, Cort, the former owner of this website himself had it, and the doctor told him he had IIH also. He wrote that he had a lumbar puncture and actually felt better for a few days after. http://phoenixrising.me/archives/2127 He wrote a feature article about it in 2011, and many patients posted that they had it. It seems to be co-morbid quite frequently with ME/CFS.

IIH and Empty Sella Syndrome is actually becoming more common, and it is especially common among young girls, many of whom are obese. I believe the obesity comes as a result of the screwed up HPA axis and hormones, and not the body fat squishing the brain fluid (as some numbskull docs are saying).

But the important thing is that your brain is under unusually high pressure, and this can cause all kinds of immunological and neurological reactions in the body. They might be causing the anxiety, insomnia, dysautomonia that you have. It also opens the doors for all kinds of CFS-related disorders; and interstitial cystitis is definintely on that list.

The best part about high brain fluid pressure as a diagnosis is that you simply have to get your doc to give you prescription for Diamox, a very common diuretic. It is prescribed for glaucoma patients, because they have too much pressure in their eyeballs, and the Diamox dries out some of the over-pressure.

Diamox only becomes a problem if you take it long term, then I think it causes Potassium depletion. Otherwise it is dirt cheap, and completely safe. Like any drug, as a CFS patient you might want to start with a very low dose and see what happens. If it does not work or doesn't agree with you haven't spent thousands of dollars.

BTW people who have IIH have terrible reactions to Florinef and stimulants. Stimulants and more fluid pressure are exactly what IIH patients do not need. I had a horrible reaction from Florinef. I suspect many of us have screwed adrenals, possibly from IIH in the brain.

The studies in Pubmed tend to focus on the prevalence of IIH in obese women. But anybody can get it, and it is probably associated with ME/CFS like symptoms.

http://www.ncbi.nlm.nih.gov/pubmed/23136035
http://www.ncbi.nlm.nih.gov/pubmed/22423118
http://www.ncbi.nlm.nih.gov/pubmed/23165338

Thank-you for your well written and though out response. I will try and read about it when feeling better.

 

[MishMash]

Thank-you for your well written and though out response. I will try and read about it when feeling better.

Hi Callie,
My pleasure to serve you. From what you've described, you might benefit from the common diuretic Diamox. It is a dirt-cheap, generic drug, and a specialist doc won't charge you tens of thousands of dollars. It has no long-term harmful effects You'll know very shortly whether it relieves head ache, upper neck shoulder pain, anxiety, among possibly other ME/CFS symptoms.

Please read my post on EDS (below). You might find it interesting. Basically, it gives the scientific basis for why EDS (weak tissue structures) causes "intracranial hypertension" leading to POTS and possibly other symptoms. The science behind this is actually very well-founded; not speculative at all. Good luck.
http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-20#post-328526

 

[MeSci]

Great suggestions! Yea I think as far as the citric acid I'll just have to make sure and take my prelief which is an acidic neutralizer and elmiron. Sobi is now making an electrolyte drink sweetened with stevia and they taste quite good.

Some people swear by a much simpler, natural and cheap treatment for IC: sodium bicarbonate. It may also help with ME symptoms by reducing colonic acidity.

 

[Seven7]

Did you see the thread going on desmopressin?? I never heard of it but you might want to read on it for volume increaser.

http://forums.phoenixrising.me/index.php?threads/observations-that-may-help-someone.19747/

 

[ramakentesh]

http://www.ncbi.nlm.nih.gov/pubmed/22561596

Licorice is much milder than florinef and works acutely by reducing the activity of vasodilating molecules. if you can handle florinef without potassium loss you should be on licorice.
Desmopressin as described above.
Dang Shen is reputed to increase blood volume
A herb that Emootje found recently is also reported to be antiduiretic.

X - angiotensin II is elevated in some but not all POTS patients.

 

[CallieAndToby]

Some people swear by a much simpler, natural and cheap treatment for IC: sodium bicarbonate. It may also help with ME symptoms by reducing colonic acidity.

http://www.ncbi.nlm.nih.gov/pubmed/22561596

Licorice is much milder than florinef and works acutely by reducing the activity of vasodilating molecules. if you can handle florinef without potassium loss you should be on licorice.
Desmopressin as described above.
Dang Shen is reputed to increase blood volume
A herb that Emootje found recently is also reported to be antiduiretic.

X - angiotensin II is elevated in some but not all POTS patients.

Great info guys. I am saving it onto my computer.

Sry I haven't been on in awhile, I'm going through a lot of family problems.

 

[MeSci]

http://www.ncbi.nlm.nih.gov/pubmed/22561596

Licorice is much milder than florinef and works acutely by reducing the activity of vasodilating molecules. if you can handle florinef without potassium loss you should be on licorice.
Desmopressin as described above.
Dang Shen is reputed to increase blood volume
A herb that Emootje found recently is also reported to be antiduiretic.

X - angiotensin II is elevated in some but not all POTS patients.

I believe licorice can raise blood pressure, so may not be suitable for those of us who are hypertensive. Shame, as I am hypertensive but LOVE licorice!

 

[Tristen]

Back when I had severe OI, I had gone through all those Rx drugs like Florinef. All would give me a few days relief and then stop, and usually cause a worse problem. My me/cfs doc said this was very typical of us folks...and he's seen thousands of PwME. Gookinaid worked better than any Rx. and I was able to stay with it.

I would never discourage ones attempts with all these Rx drugs for our symptoms because you never know....you may be one of the lucky ones. Maybe you will find some lasting relief, even if minimal. My experience is that supplementing sodium alone is not effective like a balanced blend of electrolytes. Check out the Gookinaid.

 

[ramakentesh]

I believe licorice can raise blood pressure, so may not be suitable for those of us who are hypertensive. Shame, as I am hypertensive but LOVE licorice!

Many POTS patients who are hypovolumic and have low aldosterone have Postural HYPERtension. Its a natural result of reduced plasma volume and compensatory upregulation of sympathetic activity. In Low Flow Pots there was often hypovolumia and postural hypertension reported meaning that agents like florinef and licorice would theoretically normalise blood pressure by stablising postural hemodynamics.

So just because you have hypertension doesnt mean licorice of florinef would not be helpful for you.

Also in NET defiency there can be overall postural hypertension due to excessive sympathetic transduction in the periphery but with reduced central sympathetic activity - again augmenting volume status would improve these compensatory responses to orthostatic stress.