Diamox

Only 1 more week of classes and 2 days of finals until I am free...oh wait--I have 2 surgeries this December...hmm never mind! But nevertheless I am excited to be finishing up with the semester. This will mark the first semester back after a year and a half of surgeries and recoveries. It felt good to be productive for a change, as I was used to lying around and being lazy. However, I am ready for a break...of any kind.

I saw my primary (PCP) this week and we discussed the Driscoll Theory and decided that it would be a good idea to try Diamox for my headaches. I posted a video about the Driscoll Theory and how it applies to EDS patients. Basically, the DT discusses the role of hydrocephalus in EDSers and how the neurological symptoms often times mimic Chiari symptoms. Now, we know that I have Chiari 0 (as confirmed on a MRI), but it is possible that if I do have hydrocephalus (abnormal accumulation of cerebrospinal fluid in the brain), the pressure could be what is causing the Chiari herniation. However, after taking Diamox for one day I can say with confidence that I will NEVER take it again. I experienced horrible withdrawal/hangover symptoms for 2 days (after only 1 dose) and had an out of body experience. On my way to class, apparently I stopped off at McDonald's for sweet tea. However, it wasn't until I was sitting in class with my sweet tea that I even realized I went to McDonald's. To make this even more interesting, I couldn't tell you what McDonald's I stopped off at as there are at least 4 on my way to school. So yeah, not taking Diamox anymore. For those of you who follow my blog regularly, you may remember that I had similar reactions (out of body experience, and withdrawal/hangover symptoms after 1 dose) when I took Dilaudid--maybe I should stay clear of drugs that start with "Di".

So we are back to square one. I do not know what the next step is for my head in terms of possible medications. I am really not a fan of taking meds but I was eager to try Diamox---many have described it as "life changing." I see my primary on Tuesday and will hopefully have another plan. I am supposed to be pursuing craniocervical manipulations but with surgeries coming up, I have no time and I was told it could take 3 months to get in for a consult anyway. Unfortunately, my head is getting worse and I have no direct path at the moment. 

As I mentioned in my previous post, I will start weaning of Neurontin to take Lyrica. I have been experiencing short-term memory issues and this is likely due to Neurontin. I will start on Monday! I am not going to update on anything else because nothing has changed. I am waiting for my surgeries to fix my right leg. I will start back at therapy in February (or whenever I am cleared). 

I would like to share with everyone that the Boston Bruins went 12-0-1 in November! What a statement. They did not lose a game in regulation and jumped from dead last in their division and conference, to first in the division and second in the conference. Here's to a successful month of December! Go B's!

Last night I watched the Extreme Makeover-Home Edition which focused on bullying. The story was very moving (I cried throughout most of the 2 hour episode). The Walker Family lost their 11 year old son (and brother) to suicide following abusive bullying at school. I just cannot fathom how some people can be so heartless and insensitive that they think it's okay to verbally (or physically) abuse other people. What do you gain from that type of behavior? How would you feel if you learned you were the reason someone ended their life? I signed the pledge to "stand together" against bullying. If you are against bullying of any kind, I suggest you sign the pledge as well. Together we can help prevent families from having to go through what the Walker Family has had to experience. (For more information click here) 

Photo Credits go to Extreme Makeover Home Edition