Clustered Mom
Hello there,
I am almost 36 and a mom of 5 kids (19,15,8,2, and 4months). I have struggled with clusters since about 2001. I am an eposidic sufferer so I at first I would get them every 5 years then 3 years and now 2 years. They last about 4-6 weeks and always at night or early morning. I do suffer shadows as well sometimes after but not always. In the past I have had to carry an index card of medications that I take. I will suffer a short term memory issues during my episodic period so I need to write down when I take what. Topamax and verapamil were my treatments which never did much. The topamax always creates terrible side effects for me such as thoughts of death and severe anxiety. I used to write letters because I thought I was going to die. It made me go nuts. I was on 4 different anxiety meds, toradahl shots, immatrex, etc. I then thought Id overdose on a mix of meds. This episode recently I was finially prescribed oxygen. I am breastfeeding and wasnt ready to give that up because of this stupid disease. I was trying to suffer through it. Be strong but as most of you know sometimes it cant be done. My neuro finially gave me the 02 and amazingly knocked out my attacks within 15min! I couldnt believe that such a non invasive, no side effect, natural, and safe way could be so successful but never given to me in the several years I have suffered. No insurance wanted to pay for it. My anxiety of going to bed has gone down so much. My quality of life has improved and I can be the mom I want to be. It makes me sad however to know there are people out there that cant get the oxygen. Insurance wont pay for it. We need to fight to make this available for everyone that suffers CH so that there are less suicides and invasive medications causing us to take more pills. This is such a dilabating disease. Its hard to explain to people the pain unless they have been through it. Making it through one seems like such a triumph at the end. I am like "I survived, I am alive, its over".
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