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Tips for living with Hyperaldosteronsim or Conn's Disease

Posted Mar 21 2010 9:57pm 1 Comment

The following tips may not be for everyone, but they have greatly enhanced my daily routine while living with primary hyperaldosteronism, also known as Conn's Disease.


* * Get a really good endocrinologist--this is crucial!! Not all endocrinologists understand or have experience with Conn's. Some even dismiss it as a disease that simply requires meds and little else. You owe it to yourself to find an expert. It took me 3 times to find the right one.

*Get a second opinion if you feel your doctor isn't listening to the severity of your symptoms or helping you. Ask friends/family whomever you know that have been to endocrinologists who they recommend. Personal referrals are the best.

* Research as much as possible about Conn's on your own. I've learned a lot on the internet and through support groups.

* Join a support group, they really help. These are two good ones:
http://health.groups.yahoo.com/group/hyperaldosteronism/">

http://health.groups.yahoo.com/group/hyperaldosteronism/
http://www.inspire.com/groups/rare-disease/discussion/conns-syndrome-hyperaldost

* Get your blood pressure checked regularly. Your endo and other doctors should do this each time you go in.

* Insist on getting all your results from your endo. The more you inform yourself about this disease, the more you will be able to manage it or get proper treatment.

* Avoid as much as possible salt and sugary products. It's hard if you go out to dine as most restaurants use a high content of salt in the preparation of food. Start reading labels for sodium percentages, this goes for sugar, too. Foods to avoid (I know, this part hurts...) Pizza, some soups--they can have a lot of salt, Chinese/Thai food, sugar covered sweets- donuts, candy, cookies, bacon/ham or other cured meats, fried foods, salty peanuts or other nuts (try to get them unsalted if you can), some popcorn that has salt, all sodas.

* Eat more fruits and vegetables and stay as far a way from the above list as possible. You have a disease where you retain water, eating those foods will make you feel worse and swell more.

* Drink lots of water. Also, drinks with electrolytes are great. Drink at least twice a day-- Gatorade or Smartwater, both are good choices. There are others too, read labels!

* Avoid caffeine, or cut back on it as much as possible.

* Develop or maintain a daily routine and do your best to stick to it--even if you have to push yourself to get out of bed. Try and get up at the same time, try and go to bed at a reasonable time--although this can be very hard if you suffer from insomnia, which is a side-effect of Conn's. But having a routine really helps you to feel more in control of yourself when there's an insidious disease trying to control you.

* Avoid alcohol, or cut back if you drink. One drink can feel like three, seriously.

* Start a work out routine if you never have. You will be exhausted most of the time and really have to focus on doing this, but the more you work out, the better it is for your heart and high blood pressure. It also helps with the water retention. Do this at least 3 times a week. (I swear by it)

* Tell all of your other doctors that you have Conn's Syndrome. The more they know the better. Most other doctors may not even know what it is, so you'll be educating them. This also helps with the management of prescriptions-- your other doctors need to know that you are on spironolatone/aldactone/other potassium sparing diuretic, or taking potassium supplements and high blood pressure meds.

* Take your BP meds daily, don't ever skip.

* Make sure if your doctor is suggesting surgery, that he/she has you take an Adrenal Vein Sampling test, (A.V.S.). This is crucial to determine if the tumor is unilateral or on both adrenals. You wouldn't want to go through surgery only to find out later that your other adrenal is also producing too much aldosterone. If you have the A.V.S., make sure the interventional radiologist performing it has a background of doing these tests. This is important--you don't, I repeat, DON'T want to have to go through another A.V.S. test. They are painful and take a lot of time (as well, they are expensive).

* Never take other diuretics, for example diet pills. You'll lose potassium.

*While this may be hard for some (or maybe unnecessary), I do suggest going on anti-depressants. Conn's is a disease that messes with your hormones, even if it's the hormone aldosterone. When there's an imbalance with your electrolytes, it can affect you over time. The exhaustion and brain fog is enough to affect anybody, as is insomnia.

* Confide in a really good friend or lover about your condition. Everybody varies in the severity of symptoms, but there will be times you will feel down, out of it, forgetful and just plain exhausted. Having a confidant really helps. It may even be someone you don't know very well, like an on-line friend. But reach out-- you really need to be supported right now.

* If you choose to manage your Conn's with a life-long commitment to medication, find out as much as possible about the long-term effects. Ask doctors or even better, other Conn's sufferes who have chosen this route. This goes for surgery as well. The more you ask, the more you'll know how to live with Conn's.

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I was really looking for it. I am contented with your blog.

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