In tears (as usual) ... although I now understand others' frustrations in greater detail. After my disastrous appointment this morning with my PCP, I am ready to fire her and find someone new, not that I will have any luck with finding one who knows or fully understands what CM is capable of. I go in with a list of my current symptoms (a BIG list) and she says "Thank you for bringing in the list, if only I had 4 hours to sit with you to go over every one". I said that it wasn't my intention that we discuss every one, I just wanted you to know what was going on.
So we focused on the 2 that are the worst right now (the head and neck pain). In regards to the head pain, I apparently now have a combination of tension, stress and sinus migraines and was put on yet another medication that will probably mess up my body (as if it isn't already messed up enough) and most medications give me the adverse side effects (those that you should watch for and tell your PCP immediately if you experience them). I am starting to wonder if it is because they keep trying to treat me for stuff that I don't necessarily have but is caused by Chiari ... For my neck, I will be starting PT. She didn't seem too concerned that I have been chewing up my Tylenol #3s like they are candy. I found that a little odd.
Then, to top it off, apparently there is absolutely nothing wrong with me having my period for the past 3 weeks (while on birth control). Sorry if this is TMI ... just not understanding how in ANYONE's world that would be ok. She also was puzzled when I told her that my NL said that I should have been referred to a NS instead of him. So, she left to check his notes and I left with a PT order given to me by the nurse.
She was upset with me for not starting the wellbutrin. As the "side effects" that it can cause mimic the things I am currently experiencing without taking it, my question to her was should I start taking it so that you can say that my symptoms are caused by the wellbutrin instead of the Chiari?
I'm so sorry you are going through this! I have been having the worst luck with doctors too so I can sympathize. I hope you find a good doctor soon and get to see a NS. I've now been told by two NL that Chiari 1 doesn't cause symptoms and I'm just so frustrated! Sick and tired of being sick and tired!!!
As to the TMI I had two periods a months for over two years while on birth control and told countless doctors and no one thought it was a problem. Turned out I had celiac disease and the malabsorption of nutrients caused my hormones to get out of whack. Taking hormonal birth control was making it worse. I had to switch the the copper IUD and finally things are normal for me!
Thanks Anglyn. It is crappy, and i am hoping to find someone who knows a little bit more about this. I started out optimistic because of how quickly she caught it and did the referral. Today, my optimism has changed to frustration and a resolve to find someone new.
And by what standards is having 2 periods in a month NOT a problem?!? I have tried the copper IUD and my body couldn't adjust to it. The cramps I had were excruciating. I had in the Mirena IUD for 5 years and just spotted at random intervals. But that's still better than a full-blown period for 3 weeks :(
I am so sorry you had to go through that. I have had similair experiences more times than I can count. First of all you have to be VERY careful with the neck PT. If a Physical Therapist doesn't know about Chiari it can do more harm than good and sometimes it doesn't take much. I remember years ago pre diagnosis a therapist had me do the very simple very common excersize to loosen up my neck. "Look up, look down, ear to right sholder ear to left shoulder" That is one of the worst things you can do with Chiari but a completely benign simple excersize for everyone else. It aggravated my pain and headaches for weeks afterward. Also many Physical Therapists subscribe to "No pain no gain" Don't let them make you do something that your not comfortable with or that you know will increase your symptoms. Just politely say "I'm not comfortable doing that can we try something else" If they don't or they get angry they aren't the person for you. Many people find relief with Pool PT. Microwave heat packs are my saving grace. The ones that are filled with seeds or rice. I make my own but they sell them on line at Grampa's Garden.
I don't know why lists bother some Doctors so much. The Neurologists I saw for years rolled her eyes everytime I pulled out my notebook. I also use to write down everything she said so I had a record of it and I started to take my husband with me to every doctors appointment that he could go to so he could see and hear what was being said to me because I had some crazy things said to me. My wonderful Physical Therapist said to me one time "When they couldn't make your pain go away they just wanted you to go away and they would say anything it takes to make that happen" That was a light bulb moment.
I use Zomig for headaches and it works wonders for me. The only side effect is that it makes me sleep for 4 or 5 hours after I take it if I have a headache. It's a migraine med. I found a great Primary Care Doctor by asking at my pharmacy for a list of doctors that they had good relationships with. I go to a small family pharmacy and I have had such good luck with them. They gave us a list of 3 or 4 and we picked one and she has been the best doctor I have ever had. Pharmacys know which ones have their stuff together and which ones help people out more than others. I don't know how that would work with one of the Corporate Pharmacys but it doesn't hurt to ask. Just tell them you have a rare condition and you are having a hard time finding a good doctor that will listen to you and help you and can they give you a list of doctors that they deal with that people say good things about. They can't give you just one because if it didn't work out you could blame them but they shouldn't have a problem giving you a list of several doctors. You could also ask the PT place you go to if they know any doctors that people say good things about. There are also the sites that have doctors reviews. Not all doctors are listed but I have found them to be pretty acurate when I have looked up a Doctor prior to seeing them. It may take seeing several doctors to find one that you like. Just keep the one you have until you find another.
It stinks that more people don't know about Chiari and that they dismiss us. I have been dealing with it for 16 years and have had so many shocking humiliating experiences. Before I was diagnosed I went to dozens of doctors therapists and alternative therapists looking for answers and it took four and a half years for someone to order and MRI even though I had fantastic insurence the whole time. My Physical Therapist also said "Gee you think they would have figured it out that it was your neck. You wre having shoulder pain and head pain. What's between your shoulder and your head?" LOL I had one Primary tell me "You need to get another hobby other than going to see doctors and therapists" Only you know what you are going through and only you can fight for your health. Good luck and you deserve to be treated with dignity.
Thanks for the advice Wendyann. I will definitely keep that in mind when I set up my PT appt on Monday. And I will definitely be trying the Microwave heat packs to see if they help any. And I have been prescribed Maxalt for my headpains so we will see how that works. I would just like someone to sit with me and answer my questions, especially the one about if my HS can be caused by Chiari. The HS alone is debilitating when it flares up and then when you add the other stuff from the Chiari, I am down right miserable. *sigh* I know that it's just a matter of time before I find someone who will listen. I have basically until June to find a new dr because I REALLY don't want to go back and see her.
I have a feeling that you aren't going to take the Wellbutrin, but just for reassurance....DON'T take it! That medication made all of my problems worse. I know everyone is different, but it is an ugly medication. If they want to put you on a anti-depressant for depression or for pain...ask for something else. I was offended at first when they suggested it, but now I am grateful. I take Zoloft and Amytriptyline. The Zoloft they put me on for depression, which helps. And who in the "right" mind isn't going to become depressed after the ordeals that we face on a daily basis. The Amytriptyline is to help with the nueropathic pain (mostly the burning sensation that I have on my face and upper body). They both have really helped.
Please ask friends. family, pharmacy etc. for reccomendations for a new PCP. Do it ASAP! There is nothing more frustrating than not being heard or feeling ashamed to go to your doctor with problems. I loved my PCP and she was very helpful, now I think she is just plain sick of me. I do have a good NL now, so I take everything to him. I had my decompression surgery in December. Helped some, but I am left with a lot of residual symptoms :(
Good luck my dear!!! Keep us posted. And please feel free to vent even if you think it may be TMI. We are all in the same boat.
Nicolee -- I opted not to start the Wellbutrin (thank you for the reassurance on that one although I think I already knew with that gut feeling and all). It just didn't seem like a good idea, which I'm sure the PCP didn't agree with as was noted by her eye roll and changed demeanor. When I go to work on Monday, I will be checking around with people regarding different PCPs. The way I felt when I left the office yesterday is not something that I would like to go through again. And although I know it is bound to happen, I won't let it happen with the same dr.
And I will be starting a search for a gyno on Monday as well.