Topamax and POTS. A bad combination.

Ok, so I went off the Topamax and I'm feeling much better. My cardiologist said that even though orthostatic intolerance is not a listed side effect, medications are not tested on people with POTS and we tend to react differently to them. He also said that some people with POTS are also more sensitive to medications and that medications may work differently in their systems. Meanwhile, my neurologist was telling me to stay on the medication and that passing out is not a side effect. I think this is one of those tough situations where you need to listen to your gut and go with what your body is telling you. Obviously I am not a doctor, and you should always talk to a doctor before starting or changing any meds, but if you feel like something is wrong, tell your doctor. As patients we need to remain active in running our treatment as partners with our doctors.

But you don't look sick...

This is an interesting little article. I happen to have fibromyalgia in addition to POTS, I found that this site had a number of interesting things for fibro. I do like the "you don't look sick" point it makes. If you let yourself "go" and act the way you feel, no one wants to be around you and they feel uncomfortable if they need to be, however if you put on a brave face and try to act normal, people say "but you don't look sick" and don't understand that you are really having a tough time. I guess life for those of us with chronic invisible illnesses are constantly trying to find a balance between the two.

http://www.healthcentral.com/chronic-pain/cf/slideshows/top-10-things-not-to-say-to-a-fibromyalgia-patient/we-all-get-more-aches-and-pains-as-we-get-older/?ap=825

There is actually a website/online community for people with invisible illnesses too!
http://www.butyoudontlooksick.com/

From my journal two summers ago...

"I’m scared. There, I said it. I’m scared. Terrified even. I feel like my life is spinning out of control and I can’t seem to stop it. There is something inside me that is causing problems, both physical and emotional. I try not to think about it, but the pain is constantly there to remind me. Its there when I eat, when I move, when I laugh too hard. No matter what I do, its there reminding me that I don’t know what is causing it and I can’t make it stop. I know possibilities, that scares me, but thinking that the doctors may not know what is wrong, that I might have to live like this for years to come is what I am the most scared of. I have plans for my life. I’m not too keen on change, I don’t like bad surprises, I’m impatient and stubborn. All I know right now is that there is something wrong with me, and no one can seem to figure out what. I hate sitting in the house watching the same movies every morning because I can’t sleep through the pain and can’t make myself get out of bed and deal with the pain of moving around. I’m going crazy sitting in the house all summer doing the same thing every day. I want to be going to work, making money, being with people, enjoying summer like everyone else seems to be doing. I want to not be worried, to not be wondering if I’ll be able to live a normal life again, to wonder if I can have kids, or if I’ll live long enough to see them grow up. It feels like someone read my mind while I was dreaming and decided to destroy all my dreams. Will I ever get them back? I’m not saying I’d just roll over and give up, thats not me. I’d fight for it. For my dreams. For my future. I just need to know what I’m fighting and how to fight so I can win. I’ve always been a fighter, an independent person, that girl that no one worries about how she’ll turn out. I’m proud of that person. I hate having to ask for help, to rely on other people for things. Its humiliating to have to ask people to help you walk, to bathe, to make food for you. Over the years, I’ve learned how to take care of myself, and for the most part, before this, I could do that. Now that I'm sick, that is hard if not impossible to do. And that kills me." 


Today i am grateful that I have a diagnosis and that the fear of the unknown is behind me. If you're trying to get a diagnosis, keep positive, the answers will all come in time.