desiree942

John -- I just remember something new I learned about florinef -- monitor MAGNESIUM as well as potassium. My magnesium was Ok but florinef depletes both Potassium & mag..

Hi Guys,

So I went to my Endo apptmt yesterday and the urine tests they had me do (to measure histamine levels, etc.) came back normal. She got the head of the endo dept. to come in and they still have no idea what's causing my aweful flushing and night sweats! My doc even told me that they were talking about my case at a convention they had!

So, here is where we are now. The doc ordered some plasma tests...does anyone know why plasma would be tested??? Also, the doc wants me to get in for a sleep study which would include the EEG, because he is wondering if I am having some type of seizure that is causing alot of my flushing and so forth..I didn't even know that could be a symptom of one?!

Anyhow, does anyone have any ideas for me?? I feel as though I'm never going to get better...or cool down!

Thanks,

Jacquie

OK not to blur the lines between television and reality, and not to in any way take away from your concern, but there was once an episode of Greys Anatomy where a patient had flushing and sweating and had an elective surgery to fix it...when they talked about what was wrong I think they were discussing ganglions -- or some parts of the nervous system...McDreamy the neuro was on the case. It caught my attention becuase I knew the terms from reading all the stuff on POTS/dysautonomia. The elective surgery the patient wanted was more serious than the actual flushing/sweating....that was the drama -- typical Greys stuff. Good luck!

Florinef is a steroid, fludrocortisone Acetate. I was just prescribed to start it, and I have searched and read a bunch of back posts on it.

I'd like to hear from those who had GOOD experiences, as well as from those who had BAD experiences with it. From all the old posts, it's hard to tell whether this is a good medicine that is generally well-tolerated and helpful, or if it's a bad medicine that has many side effects.

What do people really think about Florinef?

Thanks, John

Hi John,

I take florinef with an SSNRI and it has really helped me to get stable and minimized my acute episodes of pre-sync. I've had few side effects other than weight gain. From what I have raed you need to take in enough sodium to see the weight gain or it's not being effective.

Though it's worked I am trying to get my dose down b/c it is not reccomended at a dose of more then .2mg and I have been on .3mg. It is also NOT a lifelong drug ((sccording to dr. grubb) so I'd like to get stable on something that I can take long term since I don't know how long I'll need meds. When I drop the dose down I get very symptomatic.

It is REALLY REALLY IMPORTANT that you have your postassium monitored. Mine has dropped and I am taking a supplement which is harsh on my stomach. Dr. Grubb said even low normal potassium levels are bad with POTS and the new dr. I saw yesterday who knew about POTS said I need my potassium to in the range 4 (3.4-5 is th range). I have talked to someone who landed in the hospital b/c her potassium was near death low on the florinef.

After two years of searching I found a cardiologist on the West Coast who actually knew about POTS!

Dr. Grubb gave me this referral when I saw him in June.

What a wonderful thing to go to a doctor who "speaks the same language", has other POTS patients, knows the second line meds, and says "I believe your symptoms are real" and seems "excited" to work on my treatment...WOW!

Anyway if you are in California I would consider Dr. Karen Friday at Stanford University Medical Center in Palo Alto. Feel free to PM me if yon need her contact info. She had just returned from spending a week with Dr. Robertsen at vanderbilt (good sign!!!!) and seems truly commited to treating dysautonmia/POTS. It sounded like they may possibly be considering a Dysautonomia Clinic at Stanford. There is definitely a void here on the West Coast and this was great news!

Have the drs. at vanderbilt fax a consult summary to the neuro, or do you already have a cardio on your case? Is there someone they can refer you to in your area who would "work with them" to oversee/manage your case. Since the PCPs are n't that familar with mestinon I can see why they'd be reluctant to prescribe it...Just say to the neuro that you are looking for someone to manage your case since vanderbilt does not to ongoing patient care.

What did he mean about the florinef? THX

I asked Dr. Grubb this specific question and he said with POTS you will have an increase in HR on standing (+30) and you may have no BP change, or orthostatic hypotension (I have this). He said OH is common with POTS

Dr. Grubb prescribed it for my POTS -- it works great for me!

Any pne taking .2 mg of florinef splitting the dose though the day or taking it all at once? THX

Only been on it for about 3 weeks. But noticed that when I take it every day at 5 am and get up at 7 30 . This seems to be good- have alot more energy ect. But when I sleep thru my alarm at 5- and take it maybe around 6 and get up at 7 30 or 8- I never feel the effects of taking it! I know some stuff you have to take it at the same time or it doesnt work... but my dr never said anything about that to me......

I've had really positive results at times from accupunture. After my first session I was able to stand and walk like my old self, the best day I'd had since getting POTS. Since then the results are good but not as dramatic and in between seeions I revert to feeling symptomatic. I get medical accupuncture from a board certified internist who practices western and eastern medicine. I've also felt good from massages! Probably anything that calms the nervous system is helpful.

HI,

I get a massage every second week and it helps with muscle pain.

Elle - I was having Rolfing the year prior to getting POTS and my 1st pre-sync episode happened the morning after having a rolfing session. The weird thing was that the rolfer called me that morning at work and asked how I was feeling. This was not something she'd ever done before....pure coincidence? I told her about the episode and she said it sounded lke my nervous system. 2 years later I still wonder if the rolfing in any way provoked things. I wouldn't be able to tolerate it now. And I hear it's probably not great for me now that I know I have joint hypermobitity.

I was just wondering if anyone has tried any alternative medicine and what was the outcome?

Hi -- As you may know, not many drs. on the WC treat POTS but I was referred to Dr. Karen Friday at Stanford by Dr. Grubb. He said he's consulted with her by phone and she'd be able to work with me in between my visits to see him. I am seeing her in a few weeks and will post if she knows about POTS. Feel free to Email me for more info.

I tested NEGATIVE on my celiac blood panel but after continued and worsening symptoms I had an endosopy and biopsy that was POSITIVE. My gastro is very up on gluten intoleance and says the biopsy is the gold standard. Speaking with others and with my dr., it's pretty common to have negative blood but positive biopsy when you don't have advanced disease. My gene test was negative too but they don't know all the genes related to celiac. I have been gluten free for 2 years and my gastro symptoms are much better and my follow up biopsy was clean. FYI unfortunately my POTS came on at the same time my gastro symptoms improved and according to dr. grubb, celiac sprue or any autoimmune disorder of the gut liek chrons cand be a trigger for POTS

WE,

Keep us updated on how the diet goes and if you see any changes/improvements from it.

Since I started the diet the number of gluten-free products available has grown tremendously! You can now eat gluten-free and not feel (too) deprived!

Also, I posted to you under the Jess's post about the esophogus issues...

Later alligator!

Love, em

Sorry to hear that you had to give up your job. Working or not working is such a personal decision, but my experience is like yours, working means giving up other things like much of a social life. I admire all of you who are on your feet but continue to work. I have been able to work b/c I have a behind the computer type job.

Have you seen a gastrointerologist for all your "IBS" type symptoms. I ask b/c your symptoms and weight loss remind me of my POTS onset and for me it was determined to be gluten intolerance. Gluten intolerance is more common than perviously believed and because it's an autoimmune disorder of the gut there is a corrolation to POTS, according to what Dr. Grubb told me.

Sorry to hear about your son. I had a diagnosis of OI and OH for 2 years until I went to see Dr. Grubb, the ANS/POTS/NCS specialist in Toledo, he confirmed, as I suspected, that I had POTS. There is a compensatory increase in HR when your blood pressure drops on standing but the exagerated incease of over 30pts + symptoms is pretty consistent with POTS.

It is not as easy as you would think to get a POTS diagnosis. I was very very frustrated working with local drs. in a MAJOR US city who were clueless and made me feel like I was a nut case...even when I got a diagnosis from Dr. Grubb my local docs were very defensive that what I had was rare and required an expert to diagnose -- NOT.

They give TTT tests in every major hospital but don't seem to be knowlegeable about POTS, especially b/c the text book definition of POTS is HR increase +30 w/out BP drop...but this is not always true, with POTS you CAN have OH.

In reality it didn't matter what they called it b/c the first line meds are all the same, but the meds you may get from a specialist are the SSRIs/SSNRIs -- not for depression but b/c norepinephrine transmission is is key problem for those of us with POTS. I made significant improvement after starting one.

Good luck!

Many of us are on SSRIs and/or florinef that already cause weight gain. Speaking personally, the weight gain I experienced from the meds was very much of a blow to my self esteem at the a time I phyically felt the worst I'd ever felt in my life...pretty depressing time but I accepted the weight gain from the meds as I agree feeling better was my priority. I now drink less gatorade because I don't think it works as well for me as smart water and tomato juice or V8..I think the small can of tomato juice has so much sodium in a small concentrated shot of liquid that it is almost like an IV for me.

Not to make enemies on here but...I personally care a lot more about functioning day-to-day than any weight I would gain due to Gatorade. I drink it when I'm thirsty, but I also drink plenty of water and take supplements.

I've only had POTS for about 2 years, but I already feel better. I find it helps me increase my activity level so that would probably counteract any weight gain (I think someone already said that). Let's try to lift each other up and be more positive!

I THOUGHT I read here or someplace else that low blood flow to the brain/head might cause hair loss? I can relate, I have had this problem too since my POTS symptoms statred 2 years ago...some of the meds like florinef can cause hair loss but for me it seems like it happens more in the summer, seemd like it might be a cyclic thing?

I recently asked Dr. Grubb about Gatorade and he said he doesn't push it any more as he finds many POTS patients are too inactive and therefore Gatorade causes weight gain -- I think it's the high fructose corn sweetener. If you don't want to drink gatorade try smart water --it is electolyte enhanced water but no sodium. I've been drinking smart water and a small can of tomato juice for the sodium and it really helps.

The vast majority are SO HELPED by Gatorade that we pay no attention to the sugar and colorings. The RATIO of sodium, to potassium, to carbs HELPS RETAIN the fluids.

Adding water to gatorade can ruin that aspect.

That said, if you are drinking diluted gatorade just to avoid drinking too much water to wash things out, that's fine. But if you see yourself urinating too much, you should drink Gatorade straight.

It helps save me many a days and prevents trips to the ER.

many, many years ago, I loathed and detested Gatorade with it's after taste and artificial colorings. wouldn't drink it for anything. I have been so HELPED by it that I don't even mind the flavor.

But there are so many choices of flavors and many are disgusting! The X treme versions that are mixed flavors are grotesque but that's just me...and we are all different.

Hi Gillian -- Now that I have a diagnosis of POTS by Dr. Grubb I have been relieved to find others who also have the gluten connection. It seemed too much of a coincidence to me but none of my local Drs. could draw the connection until Dr. Grubb. The good news was the gluten free diet resolved all my gastro symptoms but none of my POTS symptoms -- if anything they got worse...until I found Dr. Grubb and got the right medication.

quote name='BGina' date='Aug 22 2006, 03:26 PM' post='62457']

I have Hashimoto's Thyroiditis, which is an autoimmune disease, and I also have Chronic Orthostatic Intolerance. Soon after the diagnosis of Hashimoto's, I began having "episodes" - heart palpitations, pressure dropped, fell down, pressure spiked. Perhaps they are related.

BGina

Hi Gillian

Actually, I am considered gluten intolerant based on a positive biopsy that showed the autoimmune reaction. All my blood work was negative but the biopsy is the gold standard I guess. I was put on a gluten free diet and a year later the biosy was in normal range. I requested the gene test and it was negative for celiac disease so that's why I don't say I have celiac disease. My gastro said to stay on the gluten free diet since they have not identified all the genes associated with celaic. I think mine was caught very very early but the POTS came on within 2 weeks of going on the gluten free diet. My gastro who is an expert in celiac believes 1 in 150 people is likely gluten intolerant. Dr. grubb thinks celiac/gluten intolerance, because it is an autoimmune disorder, is a possible trigger for POTS.

The terms "Celiac Disease" and "gluten intolerance" are slightly different, only because with Celiac Disease, there has been an official diagnosis through blood work and biopsy; whereas when someone calls themselves "gluten intolerant" they may simply be saying they are intolerant the same way one could be intolerant to dairy, let's say, and they get unpleasant symptoms but are not actually in danger of developing stomach cancer, lymphoma, or a secondary auto-immune disorder if they continue to ingest gluten. That being said, of course all Celiacs can't have any gluten anyway, so i suppose it doesn't matter how one describes it!

I was diagnosed with CD at the Mayo Clinic through blood tests, which showed extremely elevated antibodies (Ttg, IgA, Igg) and then through an endoscopy of my small intestine, where several biopsies taken showed my villi were wiped out by the damage of the disease. I had lost about 30lbs and was very very ill at that time, and this may have caused the POTS to develop a few months later.

Anyone who has gastro problems and suspects it may be more than simple "IBS" ( which is really just the doctor's way of saying they don't know what's wrong) should request a thorough antibodies blood test for Celiac. Make sure your dr is knowledgable, though. Many don't know about CD and don't know which tests to even order.

Yes, I was told by Dr. Grubb that the autoimmune disorders effecting the gut such as ulcerative colistis and chrons can be a principle trigger for POTS in some people. The autoimmune reaction that starts in the gut then can decide to go on to attack the ANS. I was diagnosed with gluten intolerance, considered an autoimmune, about the same time as POTS. As you know with one autoimmune disorder you have greater odds of developing another,

Leg weakness used to be my worst symptom. Are you on Florinef? I recently increased my postassium supplement that I take to offset the florinef and tthe leg weakness went away. Leg weakness is also a symptom of POTS on it's own but not in the group of most common sysmptosm from what I have been told.

I find this study of great interest but I don't "get it" entirely ...would someone with a better grasp mind translating the info into a simplified version? Like POTS for Dummies!

On the subject of EDS, I have very slight hypermobility but the way Dr. Grubb explained it to me I thought hypermobility created a predisposition to POTS due to poor vasoconstriction/blood pooling but it did not have to be the cause. My cause is believed to be post viral but having hypermobility was the 1-2 punch, it probably pushed me over the edge.

DEFINITELY ask to have your postassium checked again. Mine varied bewteen a little low to low normal even w/ 20 MEQ supplement, my cardio who doesn't know much about dysautonomia told me just have an extra banana a day...well for over a year I thought the weak legs were POTS but after seeing Dr. Grubb in June I'm now am pretty sure it was the low potassium. Also he told me that florinef equally depletes magnesium so have that checked too, mine was OK.

According to Dr. Grubb "There is a 5:1 female-to-male ratio." The article doesn't explain why but he talked to me about some women doing better when they supress mensturation and it sometimes getting worse after menopause so that suggests something hormonal I would guess?

Have you been checked for Gluten Intolerance/Celiac Sprue? Just curious since it is often underdiagnosed unless your gastro is really up on it. Dr. Grubb was telling me that it is petty common to have an autoimmune disorder in the gut (Chron's, ulcerativ colitis, etc..) as a trigger in POTS. I had a positive biopsy for gluten intolerance at the same time my POTS sysmptoms started. He said he wasn't surprised by this at all since one autoimune disorder often sets off another (he explaining ANS damage can be caused by an autoimmune attack on the nervous system).