Poohbear

Try this http://www.rxlist.com/cgi/generic/fludro_wcp.htm

See below pasted...sorry it's so long but I was hoping it would help everyone. Please read especially toward the end, in your Grandfathers' case under "Geriatric use". I'm hoping in your letter to the hospital you could attach this information (you can do a drug search on the web for a better copy/printout of this) and remind them they should have check all of his electrolyte levels PRIOR to starting him on this medication. Hope this helps!! WARNINGS BECAUSE OF ITS MARKED EFFECT ON SODIUM RETENTION, THE USE OF FLUDROCORTISONE ACETATE IN THE TREATMENT OF CONDITIONS OTHER THAN THOSE INDICATED HEREIN IS NOT ADVISED. Corticosteroids may mask some signs of infection, and new infections may appear during their use. There may be decreased resistance and inability to localize infection when corticosteroids are used. If an infection occurs during fludrocortisone acetate therapy, it should be promptly controlled by suitable antimicrobial therapy. Prolonged use of corticosteroids may produce posterior subcapsular cataracts, glaucoma with possible damage to the optic nerves, and may enhance the establishment of secondary ocular infections due to fungi or viruses. Average and large doses of hydrocortisone or cortisone can cause elevation of blood pressure, salt and water retention, and increased excretion of potassium. These effects are less likely to occur with the synthetic derivatives except when used in large doses. However, since fludrocortisone acetate is a potent mineralocorticoid, both the dosage and salt intake should be carefully monitored in order to avoid the development of hypertension, edema, or weight gain. Periodic checking of serum electrolyte levels is advisable during prolonged therapy; dietary salt restriction and potassium supplementation may be necessary. All corticosteroids increase calcium excretion. Patients should not be vaccinated against smallpox while on corticosteroid therapy. Other immunization procedures should not be undertaken in patients who are on corticosteroids, especially on high dose, because of possible hazards of neurological complications and a lack of antibody response. The use of Florinef Acetate (Fludrocortisone Acetate Tablets USP) in patients with active tuberculosis should be restricted to those cases of fulminating or disseminated tuberculosis in which the corticosteroid is used for the management of the disease in conjunction with an appropriate antituberculous regimen. If corticosteroids are indicated in patients with latent tuberculosis or tuberculin reactivity, close observation is necessary since reactivation of the disease may occur. During prolonged corticosteroid therapy these patients should receive chemoprophylaxis. Children who are on immunosuppressant drugs are more susceptible to infections than healthy children. Chicken pox and measles, for example, can have a more serious or even fatal course in children on immunosuppressant corticosteroids. In such children, or in adults who have not had these diseases, particular care should be taken to avoid exposure. If exposed, therapy with varicella zoster immune globulin (VZIG) or pooled intravenous immunoglobulin (IVIG), as appropriate, may be indicated. If chicken pox develops, treatment with antiviral agents may be considered. PRECAUTIONS General Adverse reactions to corticosteroids may be produced by too rapid withdrawal or by continued use of large doses. To avoid drug-induced adrenal insufficiency, supportive dosage may be required in times of stress (such as trauma, surgery, or severe illness) both during treatment with fludrocortisone acetate and for a year afterwards. There is an enhanced corticosteroid effect in patients with hypothyroidism and in those with cirrhosis. Corticosteroids should be used cautiously in patients with ocular herpes simplex because of possible corneal perforation. The lowest possible dose of corticosteroid should be used to control the condition being treated. A gradual reduction in dosage should be made when possible. Psychic derangements may appear when corticosteroids are used. These may range from euphoria, insomnia, mood swings, personality changes, and severe depression to frank psychotic manifestations. Existing emotional instability or psychotic tendencies may also be aggravated by corticosteroids. Aspirin should be used cautiously in conjunction with corticosteroids in patients with hypoprothrombinemia. Corticosteroids should be used with caution in patients with nonspecific ulcerative colitis if there is a probability of impending perforation, abscess, or other pyogenic infection. Corticosteroids should also be used cautiously in patients with diverticulitis, fresh intestinal anastomoses, active or latent peptic ulcer, renal insufficiency, hypertension, osteoporosis, and myasthenia gravis. Laboratory Tests Patients should be monitored regularly for blood pressure determinations and serum electrolyte determinations (see WARNINGS). Carcinogenesis, Mutagenesis, Impairment of Fertility Adequate studies have not been performed in animals to determine whether fludrocortisone acetate has carcinogenic or mutagenic activity or whether it affects fertility in males or females. Pregnancy Category C Adequate animal reproduction studies have not been conducted with fludrocortisone acetate. However, many corticosteroids have been shown to be teratogenic in laboratory animals at low doses. Teratogenicity of these agents in man has not been demonstrated. It is not known whether fludrocortisone acetate can cause fetal harm when administered to a pregnant woman or can affect reproduction capacity. Fludrocortisone acetate should be given to a pregnant woman only if clearly needed. Pregnancy Nonteratogenic Effects Infants born of mothers who have received substantial doses of fludrocortisone acetate during pregnancy should be carefully observed for signs of hypoadrenalism. Maternal treatment with corticosteroids should be carefully documented in the infant?s medical records to assist in follow up. Nursing Mothers Corticosteroids are found in the breast milk of lactating women receiving systemic therapy with these agents. Caution should be exercised when fludrocortisone acetate is administered to a nursing woman. GERIATRIC USE Elderly subjects may commonly have conditions that may be exacerbated by fludrocortisone therapy including, but not limited to, hypertension, edema, hypokalemia, congestive heart failure, cataracts, glaucoma, increased intraocular pressure, renal insufficiency, and osteoporisis (see WARNINGS, PRECAUTIONS and ADVERSE REACTIONS). Elderly subjects may also commonly be taking concomitant drug therapy such as digitalis glycosides, oral anticoagulants, antidiabetic drugs (oral agents and insulin), and aspirin which may interact with fludrocortisone (see PRECAUTIONS-Drug Interactions). In general, dose selection for an elderly patient should be cautious, usually starting at the low end of the dosing range, reflecting the greater frequency of decreased hepatic, renal, or cardiac function, and of concomitant disease or other drug therapy.

Hi! I hear your frustration!!! I'm glad they found this problem though and he's getting help. Generally, a normal potassium is 3.5 to 5 but some labs vary slightly in this normal range. Yes, the Dr's should have been looking for this!!! Once they get his levels back up he will need to be monitored on a regular basis to ensure his level is ok. Hope he starts feeling much better soon.

Thanks to everyone for your replies and support I do know that Dr's are human. What frustrates me is how difficult it is to find the good Dr's. Again, overall, my experience at Mayo Clinic in FL has been positive and MOST of those Dr's have been much better than the average at listening and understanding. It is difficult however, to deal with Dr's who refuse to help you simply because THEY don't understand. For example, in this case, what harm would it have done for the cardiologist to say it was o.k. for me to use oxygen the few times a year when I go get severe chest pain? Even if he was correct about the placebo effect (and in this case he's not)....what harm would it do for him to prescribe the oxygen? The reality is, regardless of the cause, oxygen helps. By him writing in my record that it won't help and he doesn't recommend it's use I won't be able to get my local Dr's to order it (because they think Mayo Dr's are God's who know everything) and my insurance company does the same and won't pay. I get comments like, "Well, the mayo clinic didn't recommend this so we aren't going to pay". THAT is what frustrates me...is the fact that this hurts me even more in the end.

Hi Jen, I don't want to "burst your bubble". I think it is important you have any testing that needs to be done completed. I had a similar experience to you last year though and also had to go through a patient advocate to see Dr. Low. He was polite but he was very rushed, did not explain the tests very well and in the end said, "well, you have POTS there are no other meds for you to try that you haven't already tried so go home and follow up with me in a year. (Basically, learn to live with it). And, there were some tests my cardiologist wanted run that NEVER got done. So, my point is...have the testing done but try not to get your hopes up or expect much. I do wish you the best and please keep us posted and let us know how your experience is!!

Morgan, I just wanted to let you know I'm thinking about you. I'm sorry you are going through such a rough time. I do think you handled the ER situation very well and I hope you get some positive outcome from it. Please keep us posted on what happens. Try to do something extra special for yourself to help get you through this tough time!

Ernie, I am thinking about you and your family this afternoon in particular.

Janine, I understand why you have doubts about starting a new medicine. It does become scary sometimes when you have such strong reactions to medication I did really well with Florinef for several years (although I did gain weight) and then my body kinda rejected it and I had to get off of it. Listen to your body and your fears. If you think starting it while you are already on the downside would make things worse and increase your anxiety about it then wait until you are feeling better. Florinef works, in part, by helping your body retain sodium so if you don't feel you can start it right now maybe you could talk to your Dr about increasing your sodium intake. Also, in case nobody has told you, Florinef can deplete your body of potassium so it's helpful to have your potassium levels checked after a few weeks and then on a somewhat regular basis. They checked mine about every 3 months.

I'm sorry you feel so yucky!!! A lot of people are having trouble with allergy/sinus infection so it may not be a virus. The scratchy throat could be from sinus drainage. I've gargled with salt water lots before and sometimes that will bring throat relief and help kill bacteria in the throat as well. Some people also use saline solution through the nose which can help with stuffiness and drainage. Could you try frequent gargling with the salt tonight and see how you feel in the morning. If it gets worse then go in but otherwise just rest and drink lots of water to try to flush things out. At least that way if you have to go to the Dr. you can go telling them all the things you've already done. Yeah...I'm in that mode of "I hate most Dr's too" (not all though) Sending healing thoughts and energy your way!!

Dayna, I hear you!!! This is such a difficult disorder to deal with and it seems like it totally turns your life upside down sometimes. I'm kinda in a similar situation as you right now...feeling like my support system isn't very supportive right now. I've been crying off and on since yesturday and yet someone will call and say something stupid like, "Well you don't sound like you are upset" . I don't have any good answers for you on this one. My experience is that this is a huge roller coaster with highs and lows and sometimes I just have to survive through the lows. Can you talk to your family and tell them how you are feeling? Sometimes just letting everything on the table will help. You can let them know that you understand they have their struggles as well (it's hard for loved ones to see us suffering and in so much pain and to know they can do little for us sometimes). Let them know you don't feel they are being supportive and ask them why and if they need something from you they aren't getting. Again...the key here is trying to keep the lines of communication open and being honest is the only way they can begin to help. I am also one who isn't able to tolerate meds no matter how slowly we've introduced them. I've tried every SSRI on the market as well as others that aren't in the SSRI class. Sometimes, all I can do is cry and sleep and try to escape my feelings. Sometimes getting involved in a movie or a book helps, sometimes writing my feelings in a journal helps and sometimes I put together a collage of pictures, words and images about how I'm feeling. If you are a scapbooker maybe this would be good for you....try a collage about how you are feeling right now. You could share this in counseling as well to discuss how you feel and where you are at right now. Please know there are many on this site that care about you!!

Well, a few things I've tried to turn into positives.... #1 I have more compassion and understanding for anyone with chronic illness #2 I have gained knowledge and experience with Social Security system and have been able to help some others. #3 I have more time to volunteer at my church and am helping set up a book of local resources and information to try to help others who face a variety of needs. #4 I recently (because I went to Mayo in FL) got a hotel off the beach and enjoyed the beauty of sunrise, sunset and a dolphin sighting or two even though I can't really be in the sun. It was a tradeoff I guess because the Mayo clinic is certainly not fun but I would have normally never treated myself to an oceanfront room.

I am frustrated. I just returned from a trip to Mayo. Overall, this trip was good in the sense I learned more but I'm still disappointed. I think what is most upsetting to me right now is the cardiologist I saw. On one hand he seems to understand some things and on the other hand he wasn't listening to me. I told him that sometimes if my heart has been racing for a long time I get chest pain. We've discovered over time and through trial and error that oxygen makes the chest pain go away when I'm like that. He looked at me with this smirk on his face and said, "I don't believe that. I don't believe oxygen helps you. I believe it's a placebo effect". I wanted to smack him!! Where do these Dr's learn such arrogance???? I do understand there is such a thing as placebo effect. It tends to be with people who are endorphin responders and when they think they are getting a medication their brain releases endorphins which help them feel better. Placebo effect is a "real" not imagined effect. However, I am NOT an endorphin responder (unfortunately) and if I had the placeo effect going on then I should also be feeling much better every time I take a pill and believe it's going to help. That would actually be very nice but it's not the case. Not to mention, we found that the oxygen helps by "mistake". So....because he believes it's a placebo effect and doesn't believe it's truly helping me then he won't recommend my Dr to order it for me when I need it. Between that and him saying, "Well you have a disorder that can be very disabling but we don't have anything more to offer you" --he was so cold, arrogant and calus about it. I would have been much better if he had just been sympathetic and compassionate about it. This "Well you won't die attitude" toward this is NOT helpful when it has destroyed my life as I knew it!!! Luckily the Neurologist is understanding and has excellent bedside manner. I'm just disappointed and feeling hopeless in the moment. I'm tired of being sick all the time and not feeling good day in and day out!!!!!!

I'm so sorry to hear you are still in so much pain!! I hope PT will help. Have you tried massage? Can you afford it? Most cities have a teaching facility where you can see a student in training for a lot less $$. I hope you find something very soon to bring you some relief. When you do get relief you will need to be very careful. Once a muscle spasm gets like this it is very easy for it to go back into spasm. Take good care of yourself and please wear the cervical collar as much as you can if it's helping!!

Kimberly, I think I know what you are saying. Wow, it sounds like you have had a lot on your plate too. Everyone has a different "threshold" of what they can do. I have been dealing with NCS and POTS for a long time. I was able to work for a long time although it took all I had to do it. For over a year I have not been able to work and I miss it terribly!!!! At the same time, in some respects I feel better since not working. The fatigue factor is what has been improved the most. Every time I try to get out and do things and keep a "normal routine or schedule" I crash and the fatigue is the worst part. So, I think I understand what you are saying. It is hard to know sometimes how much to push yourself and when to back off and see if resting more would help. Maybe to start you could reduce your workload some to see if they gives you any relief. I do think for many of us it's a delicate balance between pushing yourself to do all you can and allowing yourself time to rest and heal as well.

Steven, These could all be symptoms of POTS or some other form of Dysautonomia but it is good to have them checked out by a Dr. I would ask your Dr about a 24 hour or even a 30 day heart event monitor if they don't suggest it just to make sure they get a clearer picture of what your heart is doing. I have both NCS and POTS and I get a variety of problems...low heart rate as well as tachycardia, blood pressure drops and increases. It runs the whole gamut for me. The best thing you can do is write a list of your symptoms (try to list the top three that are most troubling to you first and address those first) and take those to your Dr. and hopefully they will help you get some answers. Good luck!

My thoughts are with you as you deal with this loss. I was out of town yesturday and didn't get to log onto the board. It may be too late as you may have already had to make a decision. Of course you are the only one that can make a decision but someone once gave me this piece of advice and it really helped me.... Do what you think will leave you with NO regret or as little regret as possible in the future. Maybe you could go and plan to spend overnight somewhere to give your body time to rest. If you can't go maybe the funeral home or a friend or family member could videotape the service for you. Do the best you can to take care of yourself and listen to your body and what it needs.

Steph, I hope you'll be feeling much better soon! I see where you wrote that when they check your potassium they tell you it's within "normal" limits. By any chance do they tell you what the actual number is? My cardiologist has said (and actually more than one cardio Dr has said this to me) that because of our sporadic heart rates & bp trouble that they prefer to see patients like us between a 4.0 and 5.0. Often the normal range is 3.5 to 5.0. For myself whenever my level gets in the low range of normal I start having more episodes. Now, when they test my potassium I ask for the actual number and verify their lab range. Also, something I noticed with myself is that everytime my thyroid starts declining again I get this left sided severe spasms like you are talking about. I have Hashimotos' and everytime we adjust my meds (after confirming with lab work) I start to get some relief. Maybe this is all a shot in the dark but in case it helps you in any way I thought it was worth mentioning.

I'm so sorry you've had such a disappointing experience!! I went to Rochester last year and aside from the cardiology consult I had there, everything else was a MAJOR disappointment. I've been to the Mayo in Jacksonville twice now and my experience has been vastly different there--they have been much more compassionate and helpful to me. However, in both places I did learn new things so that was good. I know it can be difficult when you rely (both physically and emotionally) to get help from these Dr's. Unfortunately, we live in a world where many people don't understand or even want to try. Just know you have us to rely on for support and we do care about you and are sending warm thoughts and healing energy your way!

I feel for you!! I've had problems off and on with neck/shoulder spasms. Mine tend to be on the left side and I've noticed that it tends to aggrevate the dysautonomia. I speculate in part, this is due to inflammation and the fact that the vagus nerve runs along the left side of the neck. Try both heat and ice and see which works better. One works better for spasms of voluntary muscles and the other works better for spasms of involuntary muscles. Gentle isometric exercise can also help sometimes. For me gentle massage (gently stretching and light massage of the neck and shoulder area) are what have helped with spasms the most. Deep tissue massage feels great in the moment but usually makes me worse the next day. It also sounds like you have trigger points (this is when, for example, if someone touches a spot on your shoulder you may feel the pain travel all the way up to your ear or some other place). When this happens, get someone to put pressure on both the "start" point and the point where you feel the pain travel. By using pressure along the line of pain you can hopefully get the muscles to relax more. In case you have never been told....with Dysautonomia it is DANGEROUS to have someone Pop your neck like chiropractors sometimes want to do. It's not the greatest idea for anyone to have their neck popped really but it's particularly true with Dysautonomia so Don't let PT or Chiropractors pop your neck. Hope this helps in some way and that you will be feeling much better soon!!

Yes, I too get this type of problem. Having said that though, since it's a new symptom for you it is important to check it out and a holter monitor will hopefully provide valuable information. Don't forget, if the 24 hr monitor doesn't show anything and you continue to have problems you can ask for the 30 day monitor. Good luck!!

Glad you are home safe and I hope you will be feeling much better soon. Hang in there!

Hi Liz! I can relate! I do have a pacemaker after years of trying meds and they either didn't work or the one that worked the best (Florinef and atenolol) my body suddenly began rejecting (mainly the florinef). At that point, because my testing showed significant bradycardia (severe heart rate drops) a pacemaker was implanted. I have had the pacemaker for almost 6 years. I have always struggled with presyncopal episodes but for the past year I have also been having syncopal episodes. I was told MOST people with NCS &/or POTS don't respond well to pacemaker because they don't tend to pass out very often as a result of heart rate drops but rather blood pressure drops. So before surgery make sure your syncope is related to heart rate drops and not blood pressure drops otherwise it won't help you at all and even if it helps you it may not improve you significantly. In terms of Ablation, my surgeon will not do it. The research still shows that on the people who had ablation though they initially had some improvement, within 9 months to a year their bodies were less able to cope with blood pressure changes than prior to surgery and they felt worse. I personally have not talked to anyone who felt much better for a long period of time since having ablation. I'm not trying to discourage you but I would just urge you to do lots of research before looking into surgery. In terms of sleep I took a very low dose of Ambien for a short period of time and it helped me get a better quality of sleep. It's designed to be used for a short period or for occasional use. I also find that on my better days, when I am able to, that exercise is helpful in getting me to sleep better. Even just a walk around the neighborhood helps. Hang in there!

Julia, I'm so sorry you've had this response. I understand how devastating it can be, not to mention how much energy it drains you when you have to deal with C*(P like this. You need your energy for other things and yet, unfortunately, you HAVE to take a stand and deal with this. You go girl!!! I hope a letter will be an eye opener and something that makes the medical community open their eyes and at least try to be helpful instead of being so destructive. I'm sending caring thoughts and positive energy your way!!

I had already been diagnosed with NCS prior to ever going to Mayo but they confirmed NCS and POTS and since the Psych evaluation is to be done at Mayo they of course have access to all the Mayo clinic records. Noone has found a cause for dysautonomia in my case. I've had signs and symptoms of it since being a teenager (I'm now 36). I think I just get frustrated and sensitive to the psychological issues. I understand where they come from but I feel most, even in the medical profession do not. I get tired of constantly being asked questions about my level of anxiety, depression etc. AND not being believed when I provide the honest answer. For example, last week while at the clinic I had some allergy testing done. Twice I had an autonomic response (which by the way, also happens when I eat certain things or come into contact with certain things). The nurse asked me if maybe the problem was simply that I was too focused on my condition. I told her "No" I was happy, relaxed just planning in my mind what my friend and I would do the rest of the day while in Jacksonville and BAM! I get this autonomic response. I told her I don't focus on my medical condition but rather it's such an intrusion in my life that after a while I notice certain correlations to things. So...sorry if it's not "normal" to respond to allergy testing that way but I have an extremely sensitive body!!! I feel like the majority doesn't listen to me and want to brush it off as being psychosomatic or something. Although, I must say the DOCTORS at Mayo have been much more respectful of this issue and I've had more positive responses from them. I don't think I would even consider a psych consult anywhere else at this point; I'm just hoping their Psychiatrists truly know what they are doing and will be respectful.

Hi! I am new to this board but have been active on NDRF for a long time. I've been reading this board for a while but finally registered. Glad to see many "old faces" still here but sorry so many are still struggling!!! Has anyone seen any of the psychiatrists at Mayo Clinic in FL? If so, can you share your experiences with me? You can email me at elpizo@bellsouth.net directly if you prefer not to comment publicly on the board. I have NCS and POTS; was at the Mayo clinic last year. I do have depression but it's secondary to the physical condition and in part a result of losing my job, my independence, my house etc. I have tried MANY anti-depressants in the past. They either don't bring any relief or I have horrible side effects. This time, they are suggesting I see a psych to evaluate the medication issue. My concern is this: #1 I have had HORRIBLE experiences in the past especially with psychiatrists. Most seem to have HUGE EGO's and don't listen to their patient. #2 My employers disability plan is trying to set the stage so they can drop my benefits. (My plan states that any mental impairment is not covered after a two year period regardless of improvement or ability to work). I have a local therapist who has backed me up wonderfully by letting them know that yes, I do have "psychiatric" diagnosis (PTSD, Depression) However, these are not what's keeping me from working. It's the passing out, rapid heart rate, fatigue and migraines w/ visual disturbance that keep me from working. I am afraid that if I follow through with the psych appt (and if I try any more "psych" meds this will give my disability carrier more ammunition to use against me. I am also afraid that if I'm totally honest with the psychiatrist and tell them my fear of what they will put in my medical record that they won't back me up, despite all the medical evidence. I want to ask them to back me up by reiterating that any "emotional" issues are normal and secondary to the physical and that if the physical were to clear up I could return to work. Someone told me if I tell a Psychiatrist that though they will probably interpret that as my trying to direct the therapy and as my diagnosing myself. Any thoughts or suggestions? Sorry to be so long with the post!