kayjay

Both of my children were born before I was diagnosed. I think that you are ahead of the game with a diagnosis. If you want to have children I wouldn't let POTS stop you! You may have to let others help you when you need it, but my children are better people from living with a "sick" mom. They are compassionate, kind, helpful, not critical of others, and are learning to be more independent and lest selfish then some of their peers. Any mother can get sick at any time. At least you may have some idea of what to expect and be able to plan. Best wishes whatever you decide. Families deal with all sorts of problems, but can become better people as a result.

I have taken both and don't like either. I just went of klonopin a few months ago. I found it to mask symptoms but not to really help any. Also it made me really stupid! I had a very poor memory on it. Both helped me sleep at first but now I take ambien and prefer it. At first I thought Klonopin was wonderful... but more than three years later I was glad to be off! One other thing to consider ( and I know some love these meds), I spoke with my doctor at Mayo last winter and he told me that klonopin has a tendency to make orthostatic intolerance worse. I thought I felt better on it but I actually was worse in terms of blood pressure swings. I grayed out a lot more when I was taking it. Best wishes.

Odd question, I know! I have children and am sometime worry about a genetic link for my problems. I always felt sick on swingsets (which makes sense for pots but was strange as a child). As an adult I was a teacher and played with my students at recess. I got so ill when they wanted me to swing.

I am wondering if any of you have and opinion about this. Thank you!

mayo clinic put me on kariva (BCP), I was told to take it for three months in a row and toss the "inactive" pills. i think it helped.

This is really helpful information for me. Thank you very much for sharing. I do want to ask you, do you ever have high blood pressure? Do you have hyper-POTS? I want to give adderall a try but my doctor is not on board yet.

I found Gluten Free for Dummies to be a helpful book.

Gluten free has completely resolved my IBS issues. I also can't tolerate fresh dairy (ok with aged cheese though).

My 13 year old is also gluten free. At first I found it overwhelming and difficult. I am so happy to be gluten free and it gets easier all of the time.

You have been very helpful! Thank you. I am not planning a trip back to mayo and trying to get my local doctor to change my cymbalta to wellbutrin. Cymbalta does help me with my fibro pain but at the moment I think I could deal with a little more pain if I wasn't exhausted.

Adjusting... do you recall how you made the switch? I have been reducing my cymbalta but am not sure if you can go right from one to the other.

McBlonde, thanks so much! Do you have high blood pressures at times?

Wellbutrin is supposed to have less side effects. It also is supposed to give you an energy boost... or at least not make you so tired. Additionally is is linked to weight loss, not gain.

I am just looking to do better.

Abbyw, the hard thing is that these drugs don't always have the effects that you think they would!

I did a search of old posts and would like to know if anyone with hyper pots takes Wellbutrin? I am currently on cymbalta and have hyper pots ( diagnosed @ Mayo Rochester). I was wondering if I can switch to reduce side effects. Any information I can find is pretty contradictory.

It does focus on ignoring and not displaying your symptoms.

The program doesn't cure, it teaches you to live with your illness and make the most of your life.

I love how you explained this Christy. Although I have been bed bound and at times I may need to rest, missing out on life doesn't help. When I am able I do as much as I can. In many ways I am thankful that I have children and animals that need my care. It forces me to get up and get moving when I feel like I can't. For some time I took a bucket everywhere I went. It is really hard to make yourself go anywhere or do anything when you are so sick. I do have to be aware of how I am feeling ( i will pass out and have broken my nose ), but when I am distracted from my "sickness", i feel better.

I am sorry this didn't help your son more, but it is great that he met other kids who understand. It is wonderful to know someone else understands.

I am currently going off of my beta. VERY slowly. I think the only way to know if I am better with it or without it is to stop taking it. Good luck.

I was on Klonopin for 3 years. Mayo Clinic Rochester told me that it can make pots worse. Just a thought. I wanted to try it because I read (on this site) that it helped some people. I did sleep better on it ( at first ) and it masked some of my symptoms. I am happy to be off of it now. Elevation affects me as well as heat. Is is possible that you are further above sea level?

I read Elizabeth Hasselbeck's book, Gluten Free for Dummies, and the Gluten Free Bible. All were helpful but the "Dummies" book is easy to navigate.

I am currently working my way off of nadolol. Not sure how it is going to go yet. I have been on it for at least 3 1/2 years.

I was misdiagnosed with "reactive airway syndrome". i have taken singulair, adovair, abuteral ( not sure of spellings). Nothing worked. The beta blocker and treating my pots helped most. I have mentioned before that I am on nadolol. It took a long time for me to get over side effects but my shortness of breath ( which was one of my worst symptoms) is much better.

I am very hyper pots - if there is such a thing. I will test postive for adrenal tumors ( don't have one though). I was treated with 2 different alpha/beta blockers but have less trouble with just a beta. Took some doing to find the right one.

I was given labetalol before I was diagnosed hyper pots. At the time i was misdiagnosed with a pheo by doctors at Johns Hopkins. Now I am on nadolol ( mayo clinic rochester). Nadolol is much better for me.

Thanks Bella! He is having his 2nd 24hr blood pressure cuff tomorrow. I think I need to go back to a cardiologist. We have been seeing a nephrologist. I am not really seeing POTS with him but the high blood pressure thing is just so strange!

I have completely lost my vision from low blood pressure ( not sure if I passed out ) while laying in bed reading.

It becomes lower when seated, but he is on medication for high blood pressure.

Kind of both. A big jump after movement of any kind and then it lowers with rest.

I have POTS and oi. I am asking this question because my 12 year old is hypertensive and I am starting to think that OI may be the problem. I did a "poor man's tilt" and did not see the 30bpm "bump' of POTS.

If anyone here just has oi... or had oi before pots, can you let me know. I am wondering if I need to push for a tilt table test. THANKS

I have zigzag light flashes in my vision with migraines. I have also had vision loss ( not total) and my vision can be blurry. For me it is very different from my pots vision issues. with pots I sometimes see spots and "grey out". If your vision is affected by position or movement that sound more like pots.

I was too sick myself to nurse either of my children. I just wanted to let you know that formulas have come a long way. Both of my children thrived. I just wouldn't want you to feel that you are harming your child if you choose to wean. As my doctor explained it is just food. A mother's diet ( and medication ) affects the quality of milk. Some people are almost militant about pushing breast feeding as if moms who bottle feed are "bad". Most "research" on this topic is co-relational and therefore pretty useless.

I now laugh at suggestions that bottle fed babies are less intelligent, have more ear infections, or my very favorite ...nursing is increases the bond you have with your child. The current statistics on this topic do not allow for the socioeconomic background of the mothers. My children are both more intelligent than my husband and me. It is insulting to suggest that breastfeeding is needed for bonding with your child. Fathers and adoptive parents everywhere would disagree. I have 16 nieces and nephews that were nursed. My babies were just as healthy ( if not more so ) than their cousins. They also have always been on honor roll. I have a niece ( breastfed exclusively) with diabetes and nephews who have academic problems.

The best gift you can give your child is a healthy mother so I hope that you feel confident that whatever you do to promote your own health is the right thing to do. As a side note, my husband loved being able to feed our children. For my children it was the best decision and my only regret is that I felt the need to explain myself ( I was in my 20's) to obnoxious women who believe that it is wrong to bottle feed. Best wishes