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I'm not crazy after all!!!


Jillybeanbme
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I was dx'd with POTS/Dysautonomia 3yrs ago. (I should have been dx'd in my early teens but no one would ever listen to me.) My neurologist didn't really explain it to me. He just said take this medication(Florinef), increase your sodium, potassium and fluid intake. Oh yeah, and wear compression pantyhose. And to follow up with my primary care physican. My PCP never really addressed the situation again. I quit taking the Florinef after I puffed up and decided to just suck it up. Well, I can't suck it up anymore and I have an appt with a local specialist. I only made the appt because I have been staggering occasionally when I walk(does anyone else do this?). Now after doing some reaserch of my own and reading postings, I now know that all the other things going on with me are possiably related...so I not crazy after all!!! My appt is next week. Please tell me some things I should request to have done. I've had a Tilt Table and general blood work including tyroid & B12, but that 3 yrs ago! Oh yeah other things happening...night sweats, constipation, moody, lack of sex drive, shortness of breath, forgetfulness and the usual stuff dizzy, loss of balance, cold hands & feet and this "fruity, something's just not right" feeling in my head. I want to make sure I ask all the right questions. Thanks for all of your help and honesty. It 's nice knowing that I'm not alone and someone else does understand!

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sorry please ignore the previous posting....I'm not sure what I did but it didn't go well.

Anyway, Welcome and hope you're feeling better. If your previous medication was not doing what you need, have you tried Midodrine yet? It works well for us and I like the fact that it has a short duration in the system and you can use it only when you need it instead of taking something every day.

good luck.

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Many of us went for years being told it was "all in our head". I was told by at least 3 doctors that "this happens to ALL women your age". I was 43 at the time and knew a lot of women who were older than me that hadn't had problems. Best of luck with your specialist! This forum is a wonderful, supportive place - it has helped me through many dark and lonely times.

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Hi!

Welcome to the forum. I'm still faily new, but learn a lot here!

I'm wondering how many out there have gotten or are "puffy" with Florinef? I've been taking it since early September and have been gradually getting more "puffy." Will it stop bloating me up and level off? Or does it just keep on going?

I'll ask this of my local cardiologist and at Mayo autonomic lab in Feb, but in the meantime, I'd be interested in experiences out there.

Again, welcome, "JillyBean"

Ginger

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Hi Jillybean! I could only tolerate Florinef 3 days because it raised my pressure so high and I felt like I was going to have a stroke, but I know some people really do get help from this medication.

Gayla, I was also told initially that my symptoms were typical for women my age as well, but most of my friends are older than I am so I also knew this was not true. We weren't born yesterday! Happy New Year! Martha

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Guest tearose

Dear Jilly, welcome!

You my dear, are not crazy and having survived with so little information for those years, also means you are one tough cookie! Give yourself lots of positive reinforcement!

We really do understand.

I think for every one excellent doctor who knows about dysautonomia there are dozens who don't know! You are right to start questioning everything. Ask about your night sweats, the swelling, the florinef, the dizzy stuff...and if the answer sounds off or unclear, ask for more information. Once you take control of managing your "medical team" you will select who makes the team and who does not. You want doctors who will give you respect and answers. If they don't have the answer then you want to be told that. Then they can direct you to someone else who will open other doors for you. Also, this can be a lot to take in so you can say "time out" when you need to stop and think things through.

When is your appointment next week? Are you seeing a specialist?

You ask what questions to ask...go through the history here and write down what you want to ask. Ask for a complete autonomic nervous system evaluation. Ask to be treated as an equal and told everything they find and are thinking. Tell them you need to know and understand what is happening with your body.

One of my favorite types of questions to ask a new doctor is "did you specialize in this? did you get an "A" in dysautonomia?" When the dr. asks me why I ask that I say because there is only one of me and I don't want to deal with a doctor who got an "A" in anatomy and only a "C" in problems of the autonomic nervous system. This helps the doctor and me bond too!

Well, hope this helps a little

Good luck as you get ready for your appointment, keep searching for answers,

best regards, tearose

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Thank you Tearose, you are too kind!!

My appt is this Thursday Jan.6 and it is with a local specialist who also suffers from POTS. He had to give up his Internal Med practice because of his POTS. When I called his office to make the appt I was told I had to be referred, so I contacted my Neurologist for a referral. You would think my Neuro would want to see me first since it has been 3 yrs since I've seen him, NO, he did not. I'm not sure if I'm happy he saved me the money of an office visit or ticked that he wrote me off so easily. I hopefully will start getting the help I need. I have been making a list of "things wrong with me", if I don't I will never remember to tell him all of them. If it were not for this forum I never would have associated a lot of things to my POTS.

I'm currious about the tired thing. I've read in a lot of these posts where some of you can't work and have difficulty getting out of bed. Has it always been that way or was it gradual? I'm always tired, sometimes more than others, but thankfully I am still able to work. But unfortunately, because I use my energy for work I don't have much leftover for my kids. Guilt..Guilt..Guilt!!! :P

Ginger,

While taking Florinef make sure you get your potassium checked. I wasn't followed up properly after being put on it. Two months after I started taking it I had to have an emergency appendectomy and was given 2 bags of potassium in the ER because mine was so low. Good Luck!

Thanks again everyone for being so kind and helpful!!

Happy New Year,

Jill

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Thank you Tearose, you are too kind!!

My appt is this Thursday Jan.6 and it is with a local specialist who also suffers from POTS. He had to give up his Internal Med practice because of his POTS. When I called his office to make the appt I was told I had to be referred, so I contacted my Neurologist for a referral. You would think my Neuro would want to see me first since it has been 3 yrs since I've seen him, NO, he did not. I'm not sure if I'm happy he saved me the money of an office visit or ticked that he wrote me off so easily. I hopefully will start getting the help I need. I have been making a list of "things wrong with me", if I don't I will never remember to tell him all of them. If it were not for this forum I never would have associated a lot of things to my POTS.

I'm currious about the tired thing. I've read in a lot of these posts where some of you can't work and have difficulty getting out of bed. Has it always been that way or was it gradual? I'm always tired, sometimes more than others, but thankfully I am still able to work. But unfortunately, because I use my energy for work I don't have much leftover for my kids. Guilt..Guilt..Guilt!!! :P

Ginger,

While taking Florinef make sure you get your potassium checked. I wasn't followed up properly after being put on it. Two months after I started taking it I had to have an emergency appendectomy and was given 2 bags of potassium in the ER because mine was so low.  Good Luck!

Thanks again everyone for being so kind and helpful!!

Happy New Year,

Jill

Jill,

I found the doctor you are talking about tonight online. I'll look forward to hearing how your appt goes! My parents live there and trips could be arranged if everything lines up right. Good luck!

Denise

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Guest tearose

Hi Jill,

I think you should think positive. You are fortunate that the Neuro is not wasting your time and energy if he can't help you directly and is sending you off to the pots specialist! But as I said earlier, ASK him, "why don't you feel it is necessary to see me? Just ask! What is the specialist able to practice since he gave up internal medicine? Do you know a lot about what he does in testing/treatment?

Just a suggestion: when you are writing up your questions try really hard to stay focused on the specific symptoms. Keep your explanations as simple and factual as possible. Do not under any circumstances, allow a doctor to "tell you" you are stressed!!! Who isn't? Just remind him that most normal people can walk, breathe, run, jump, swim, digest food...and not have to deal with repercussions the following day! We do.

As for the tiredness I experience...I have been getting slowly worse but it has been since 1991..No, I'm not tired all the time. I just have to be keenly aware that every action costs me energy. I use an "energy point system" to avoid overspending my energy. I can't count on my body having the strength or endurance it had before pots. I may need to rest two days after having guests over for a weekend dinner. I may be able to drive every day for 20 minutes but not have the energy to make dinner. It is more than perceived fatigue too..I have trouble with walking, balance, muscle strength. It is very frustrating because one day I may intelectually want to do things but my physical body is just not able too. If I push I run the risk of having serious complications that usually set me back. I think I'm getting better at knowing what my triggers are: a cold, a virus, too much activity, pushing myself..

If I can avoid getting to that point I can avoid feeling that bad tiredness.

take care, tearose

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Tearose,

Since Dr. Thompson suffers from POTS himself he limits his practice to the treatment of pots and other dysautonomia things and he only sees patients a couple days a week. He used to have his Internal practice where I work and I always heard wonderful things about him. I just recently found out he was back seeing patients. I guess I'll find out Thursday what kinds of testing/treatment he does. As a matter of fact, he was the doctor who interpreted my tilt table test. So I don't forsee him giving me the run around.

Today was a bad day. Short of breathe all day, hot flashes, dizzy and I kept forgetting what I was trying to say mid sentence. I don't understand, I rested all weekend.

Thanks again for everything,

Jill

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Guest tearose

Hi Jill, I understand the non-predictability of symptom all too well! That is so frustrating because you would logically expect that when we rest for a couple of days (though staying mobile) we could count on our bodies to come through for us when we need! NOT the case! :lol:

Just keep a positive attitude and be very flexible. It may have been that you were fighting a bug and didn't even know it. Your hormones could be on the move... You may just have needed more time to rest...you just may never know.

Don't let your mind be hard on your body...your body IS doing the best it can!!!

I hope your appointment goes really well tomorrow. I am sure you are preparing for it and being very hopeful that this dr, will be the anchor you need!

best regards, tearose

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