desiree942

anyone get leg pains/cramps from florinef? the fist time i ever tried florinef, i had terrible leg pains/cramps....i stopped taking the med about three years ago and have recently started it again to try and bump up my pressure a little. once again, i have started in with terrible leg pains and i know it's from the florinef.....i have heard many of you talk about headaches from it, which i have also gotten, but they are mild and dont bother me that much. the legs pains are horrific. any of you get this on florinef?

What dose and how much potassium? I had trouble with leg pain and when my potassium was upped from 20MEQ to 40MEQ it improved. Dr. G. told me too much or too little potassium can cause leg pain -- mine was a more a leg weakness.

Sorry that you are going through a rough patch. When I read your other medical notations it seems like there is a lot going on with your spine and I wonder how this is impacting you ability to stand and walk. I have a lot of lower back/leg weakness so I relate. I just remember talking to different people with hierniated discs but not POTS who had so much trouble standing and walking. I hope you get some answers and relief.

Need some more of your great input.

As I mentioned before I am going ahead a trip to Africa in summer 2007. I met with a very knowledable travel nurse regarding the shots I'll nneed. I wanted to this as far in advance to know what I am up against and also to have time to consult with my doctors (who takes weeks to return a call!) So the only red flag the nurse saw was that they cannot give me a yellow fever vaccine if I am on florinef. She suggested I talk to my dr. about weaning off it to get the shot. She said I'd probably need to be off it about 30 days (though dr. grubb told me it satys in your system about a week). If I cannot get off florinef I'd have to be given a waiver to enter the country based on an immunosuppressive condition (florinef is an immunosuppresive medication).

Guess I am weighing the quality of life off florinef (it helps A LOT with keeping me on my feet) vs. risk of going to Africa uprotected.I am trying to do as much research as possible as I have a dr. appt. after the 1st with my POTS specialist. We were already talking about increasing my SSNRI but I don't know if this will offset the loss of florinef. I also know I have the potassium balncing act to deal with....

Has any one weened off florinef and how did you do it? How long did it take?

As always your input is valued!

The gluten free thing does get better/easier! After 2.5 years I no longer feel deprived. I got in a routine and it becme a matter of knowing to buy brand x rather than brand y.

I'll admitt I do miss the ease of eating out, or ordering a pizza. Now I deal by making new things and looking for mainstream recipes that are GF, or where I can use a brand I know is GF rather than trying to recreate old dishes using GF flours, etc.. I am much happier. I found a GREAT flourless peanut butter chocolate chip cookie recipe...my office loved them, I loved them, feels more normal for me.

Now I don't crave wheat flour.

p.s. Dr. grubb thinks that my gluten reaction was a trigger for me getting POTS, though the GF diet did not help my POTS symptoms only the GI stuff.

OK, I have been super symptomatic the past week following a mini episode of pre-sync last friday. I was in target and started to go super weak in the legs, dizzy and heart pounding -- have not had this in a very long time. The weather has been colder on the west coast -- some mornings in the 30s and when I go indoors I am getting dizzy and nauseous, I get chills, when the heater comes on at work automatically I can tell instantly because I feel horrible. I also feel bad when I go from warm to cold. Does anyone get the cold to hot thing?

Could someone explain what it means exactly and how you do it?

Yes yesy yes -- was doing great for 6 weeks no BAM --- now when I go from cold to hot I feel like ****. First episode of pre-sync in many many months last week and I still feel weak and unstable on my feet days later.

I saw him in June and the office visit was 3 part lasting a little over 2 hrs. Part 1 he did an intake, asked a lot of questions, reviewed all my past tests, etc.. Part 2 a thorough exam where he checked pulse, BP in all positions, checked for joint hypermobiltiy, and asked more questions and provided lots of info, part 3 was a slide show on dysautonmia and POTS (which was his diagnosis based on my tests/his eam) and then he gave me his prognosis and he outlined a new treatment plan that was plan a, b, c....it was very comprehensive, no additional tests were needed from him, he did advise addl' blood work to be done back home with my local doctor. The office visit was not covered by my HMO so it was fairly expensive (a little less than $1000 + airfare + hotel) but it was well worth it!! He also gets into some of the psychological aspects of chronic illness. It was like no other dr. visit I have had and I have nothing but the utmost admiration for him. The only downside for me has been my local cardio still waiting to get a response back from his office to move forward with other aspects of his treatment plan, I know he is very very very busy so I have been patient. I will see him again in 2007. Best doctor visit I have ever had!!!!!!!

It has been interesting reading this. I must admit I understand how you are feeling cariactec, that POTS isn't for you a dx, but a list of symptoms. That is what a syndrome is - a copilation of various symptoms that go together and it is a diagnosis. For example - Down Syndrome, Rett Syndrome, Angelman Syndrome, I am an SLP in the special needs field and could list syndromes that are true diagnoses for a few paragraphs. I always have said that every year I get a client with a syndrome I have never heard of and need to research. This year it was mine - POTS.

A syndrome is a compilation of symptoms that when they always occur together becomes the diagnosis. Within any syndrome there is the range of experiencing the symptoms in varying degrees. People who have the syndrome may not have all the symptoms noted within the syndrome or may have symptoms that are not typically in the syndrome but have no other reason they have that symptom. Typically one needs to have a certain number of the symptoms to have the syndrome as the diagnosis or the syndrome has a major symptom or test result that must be present. For POTS, the TTT seems to be the definitive. Also from an insurance perspective it has a diagnostic code that makes it a diagnosis.

This is not to say you shouldn't seek 2nd opinions. But though this might help in understanding. I do wish it had a name other than POTS. I agree with others who have mentioned in other posts that it is hard to be taken seriously. But, that is for another string of posts.

Happy Holidays,

Amy

I think I read an article in which Dr. grubb was quoted as saying by the time he gets a patient they've seen 11 drs. and not been properly diagnosed. I saw him last summer and it was worth the $$ b/c it put things in perspective and gave me hope. He has probably seen it ALL so he can best say if your symptoms are POTS and/or a secondary condition. There are a lot of disorders that co-exist with POTS. I will see him again in 2007. He doesn't have the magic pill but he will know what meds are best for YOU as an individual given your symptoms/history. I have improved a lot since seeing him, but I still have bad days like most of us...having a spell right now after doing well for many months! I spent a lot of time trying to find a local doctor and finally I realized the problem wasn't me (anxiety) it was THEM so I just waited the 9 months to see Grubb, well worth it.

Good for you!!!!

Tilt training is difficult, I can be on my feet much longer than I can stand still against the wall.

Thank you to everyone for your replies -- I value all your input, ideas and suggestions. Sometimes I feel isolated living with POTS because the people around me don't have the same persepctive on how POTS effects our daily quality of life. I learn new things and meet new people every day, one of the benefits of POTS. Thanks again!!!!

I would do the trip. I am biased b/c I lived and worked in Botswana for 2 years and I LOVED it and would so love to go back. Where in Africa are you going--since you say Safari, I assume eastern or southern Africa?

I guess there are some issues to keep in mind, given that you have POTS:

the long airplane ride--keep well-hydrated and move about as much as possible. This is advice for anyone but really important for you.

Africa is generally hot and generally very dry. You will lose fluids faster than you may be accustomed to at home. I would bring powdered re-hydration salts to mix with drinking water there.

If you are on prescription medications keep in mind that not all prescription meds will be easily available, depending on the country you are visiting.

Depending on the country and where in the country, medical care may be poor.

If you are going on a "package" tour, it is very likely that all your basic needs can be very well-accomodated -- you will stay in comfortable accomodations, have a variety of foods to eat, your schedule will be predictable (e.g., if your vehicle breaks down, another vehicle will be available; meals will be on a schedule, etc.); medical evacuation is possible if a life-threatening event occurs.

Traveling Africa on your own, which is mostly how I experienced it, is a completely different experience. I would not recommend that kind of travel for someone with significant health problems.

I would not worry about the vaccines--unless you have had problems with vaccines. The vaccines will ward off diseases that would be far far more problematic than any likely response to a vaccine--but if you are concerned, talk to a doctor.

What about malaria prophylactic? What will you take? I might be a little more concerned about that-how it might interact with other meds or with POTS.

Hope you can go--Africa is amazing and the experience will change you in some way for the rest of your life.

Katherine

I had a similar experience. After my tilt test I was given a diagnosis of OH and some meds and told by my local cardio nothing more could be done -- but I MUST find the underlying cause of the OH and that was not the job of a cardio. I went to a bunch of docs had a bunch of tests and they all showed nothing. So I was living in fear that there was something wrong they weren't cathing like MS or cancer. Then After reading sites like this I really suspected POTS. I got a HR monitor watch and that pretty much convinced me . FInally Last June I saw dr. grubb and he diagnosed me with the abrupt nset form of POTS. Text book definitons of POTS suggest HR increase with no BP drop but he said that is not always the case and OH is common with POTS. It didn't make a huge differnce in terms of treatment (he added a new one that has helped greatly) but it did give me a new level of understanding, some hope, and peace of mind!

What would you do? Looking for the POTS perspective:

One of my life long goals has been to go to Africa on a Safari and that opportunity has suddenly come up for next summer to go with a my friend and her mom. A year ago and I was so much worse that I NEVER would have considered it. But I have been more stable the past few months and am giving it some serious thought.

I still work full time, I don't pass out, just some presync and I haven't has a major episode in over a year and a half. I have flown several times the past year and do ok. But his is MAJOR flying and some serious travel -- 14 days. The tours are by car not a lot of walking from what I understand.

I am fearful that if I don't push myself to go I will look back regret it and feel like POTS has won again! It's hard to know how I will feel in a year but the trip must be booked in January. On a scale of 1-10 with 10 being my pre POTS life and 1 being days of being in bedridden with POTS I'd say I am now functioning some days at a 7. I am blessed to be doing better and I also don't want to set myself back ---- looking for some input.

My other MAJOR concern is that I could have a bad reaction to the vaccines. Anyone heard anything about the vaccines and POTS? I will ask Dr. about this but first I need to do some research on my own. Thanks!

CDC vaccines:

The following vaccines may be recommended for your travel to East Africa. Discuss your travel plans and personal health with a health-care provider to determine which vaccines you will need.

* Hepatitis A or immune globulin (IG). Transmission of hepatitis A virus can occur through direct person-to-person contact; through exposure to contaminated water, ice, or shellfish harvested in contaminated water; or from fruits, vegetables, or other foods that are eaten uncooked and that were contaminated during harvesting or subsequent handling.

* Hepatitis B, especially if you might be exposed to blood or body fluids (for example, health-care workers), have sexual contact with the local population, or be exposed through medical treatment. Hepatitis B vaccine is now recommended for all infants and for children ages 11?12 years who did not receive the series as infants.

* Malaria: your risk of malaria may be high in all countries in East Africa, including cities. See your health care provider for a prescription antimalarial drug. For details concerning risk and preventive medications, see Malaria Information for Travelers to East Africa.

* Meningococcal (meningitis) if you plan to visit countries in this region that experience epidemics of meningococcal disease during December through June, (see see Map 4-9 on the Meningoccocal Disease page).

* Rabies, pre-exposure vaccination, if you might have extensive unprotected outdoor exposure in rural areas, such as might occur during camping, hiking, or bicycling, or engaging in certain occupational activities.

* Typhoid vaccine. Typhoid fever can be contracted through contaminated drinking water or food, or by eating food or drinking beverages that have been handled by a person who is infected. Large outbreaks are most often related to fecal contamination of water supplies or foods sold by street vendors

* Yellow fever, a viral disease that occurs primarily in sub-Saharan Africa and tropical South America, is transmitted to humans through the bite of infected mosquitoes. The virus is also present in Panama and Trinidad and Tobago. Yellow fever vaccination is recommended for travelers to endemic areas and may be required to cross certain international borders (For country specific requirements, see Yellow Fever Vaccine Requirements and Information on Malaria Risk and Prophylaxis, by Country.). Vaccination should be given 10 days before travel and at 10 year intervals if there is on-going risk.

* As needed, booster doses for tetanus-diphtheria, measles, and a one-time dose of polio vaccine for adults.

Has your activity level lowered a lot since you developed POTS?

Are you drinking a lot of gatorade? I know it helps us a lot but the combo can cause weight gain.

My POTS onset started in May 2004, in Nov. 2004 I had positive tilt test for "orthostatic hypotension" but over time strongly I suspected I had POTS. I made a little improvement with my local doctors who gave me the first line meds but quickly said there was nothing more they could do. Finally I decided at the end of 2005 I would seek an expert opinion and waited until June 2006 to get an appointment with Dr. Grubb, that was the best thing I ever did even though it was expensive to travel across the country and not covererd by insurance. I am getting progressively better over time but I have made the most improvement over the past 6 mos. since I saw Dr. grubb and he diagnosed me with POTS, gave me cymbalta & peace of mind that my symptoms were real, and his professional opinion that I'd probably continue to improve and he kicked my butt to expercise and rebuild leg strength. He told me that the marker people who show improvement ususally continue to improve until their sysmptoms are either gone or managable with meds.

This thanksgiving I was thankful that I was much better than past years and everyone commented that I seemed better. I was able to play in the yard with the kids, cook som side dishes and not be 100% consumed in managing my POTS symptoms (an ssnri helps alot with that).

My personal opinion -- recovering from POTS does happen on a timetable, what little research they have suggests 2-5 years on post-viral POTS. I think once I accepted that whatever was wrong with me was not going away any time soon, like a cold does, I was in a much better place. I learned to be very very patient, take each day as it came, and NOT let myself get too hopeless. Dr. Grubb gave me hope and as he has written, hope is as valuable as the "magic pill" we seek as patients.

Are you seeing a POTS specialist and have you discussed an SSRI or SSNRI like lexapro or cymbalta. From my experience so much of the anxiety feelings like you described have improved greatly when I was given cymbalta. My POTS symtoms like lightheadedness and feeling shaky when standing and off balance also improved. I take it with florinef and while I am not back to normal I am a lot better than I was...functioning at a higher level. When I have very bad day I try and remember an OK day with POTS and just remind myself there are bad days and so-so days...one or two good days every few months. Depending on how long you have been on your current meds it might be time for a new set of eyes to advise you on your case and try something new.

That sounds high and My gut response, non scientific is that you should have been started at the lowest dose of 20 mg. to see how you tolerated it. I though the the max dose is 60mg/day, I think it only has pain management benefits at 60mg, such as for fibro.

What was the dose of cymbalta? I was started on 20mg and am probably moving up to 40mg. It has made me much more functional. Another person I know with POTS is also on it (we both see Dr. Grubb and it seems to be his new drug of choice) and she has done so well on cymbalta she quit her beta blocker and feels like her pre-POTS self. I have had minimal side effects except feeling tired when I first started it...

Dr. Grubb explained to me that with an autoimmne discorder like celiac/gluten intolerance, once you take away the gluten and there is nothing for your body to attack in the gut then it might go on to attack someplace else in the body, such as the ANS which might = POTS. That doesn't explain why the POTS gets worse but Dr Grubbs repsonse was "it wouldn't surprise me"

2 years later and living GF and on meds my POTS flare up has calmed down to a steady set of symptoms. If you are truly gluten intolerant there are long term implications of eating gluten.

What was the dose of cymbalta? I was started on 20mg and am probably moving up to 40mg. It has made me much more functional. Another person I know with POTS is also on it (we both see Dr. Grubb and it seems to be his new drug of choice) and she has done so well on cymbalta she quit her beta blocker and feels like her pre-POTS self. I have had minimal side effects except feeling tired when I first started it...

For me traveling with someone else is much better. Try and fly off times if possible and if you need a chair -- why not!? Mornings are my worst time and the airports are busiest then. I flew last weekend and even though I am more stable on my meds now, 2 yrs since geting POTS, I still find the security line hard to stand in...just make sure you are well hydrated and try not to get too stressed out before you go, I try and get extra rest the week before I travel. Remember most places in vegas are air conditioned inside but out doors it can be very warm.

I have heard that the Ileocecal Valve syndrom and it is something most holistic healers will point to as causing all kinds of symptoms:

Tinnitus

Nausea

Syncope / Near syncope

Headache

Bad breath

Face pallor

Dark circles under eyes

Dizziness

Bowel disturbances (diarrhea / constipation)

I have found that accupuncture has really benefited me and improved my POTS symptoms by calming my nervous system. I had a saliva test for adrenals and they were not sluggish but alot of the holistic healers go after that as well.

Isn't it also that they all know about NCS but it was only in the last 20 or less years that POTS was identified as a subset of NCS patients...

I am diagnosed as gluten intolerant and going gluten free improved most of my gut problems but very soon after going GF I got full blown POTS. None of my POTS symptoms got better eating a GF diet. Dr. Grubb feels that any of the autoimmune disorders associated with the gut such as chrons, ulcerative colitis and celiac are potential triggers for POTS and I think this was my problem. If you have not had an endoscopy and it is covered under insurance it really is considered the gold standard. My endoscopy was postive though all my blood work, including the $450 genetic test was negative. I guess it's common. It doesn't hurt to try living GF and seeing how you feel but do any testing for celiac BEFORE you start a diest to avoid false readings.

I only get a head ache if I OD on the salt...

Florinef takes about a week to build up in your system from what I understand.

Yes, I get very symptomatic in loud restaurants -- even though I am sitting and my HR is OK, I feel very POTsy!

Hey,

I think noise bothers me more when I'm not in control of it. Like you said, home noise, music in the car or the kids noise doesn't bother me but someone elses tv or noise in a restaurant or store drives me crazy. I also have a big problem with too much light. I think it has alot to do with pots. I also have CFS, so maybe it is a little of both. You all are always such a big help to me. Thanks,

Donna