Saturday, October 15, 2016

Neurologist Update: Starting Topamax

October 12, 2016 - Day 1:

I don't want to get ahead of myself, but Topamax has sure made me feel better since I took it last night! Not 100%, but I'm feeling more functional than normal, which is good.

October 13, 2016 - Day 2:

Day 2 of Topamax left me not being able to move my neck. The left side of my neck went into spasm and locked up. That was almost 12 hours ago and I still can't move my neck. It's beyond frustrating because I actually feel great.

October 14, 2016 - Day 3:

Day 3 of Topamax left me convinced I'm having symptoms from stopping other medications. We'll know for sure with the MRI next week, but it looks like a long journey ahead.

MRI of head and neck is scheduled October 21st.

Sunday, October 9, 2016

Overdue Update

I have good intentions. I plan on writing all sorts of new blogs. My health has been ups and downs. I'm wondering what the Neurologist will find next week. I'm wondering how well my health insurance will hold up. I live in a state with a limited amount of doctors. There isn't the simple solution of driving to the next town. I'm a bit isolated and at my wits ends with doctors and insurance. I was going to write about last doctor who I saw for a year. There were new and interesting treatments, but I kept getting handed more and more medication. Nothing has improved in months.

I was diagnosed with Sleep Apnea in September 2014. I've been faithful using my CPAP. When I actually get sleep I feel good. My newest problem is insomnia and health insurance trying to put me back on Ambien. No thank you! Ambien gives me memory loss! I successfully took Lunesta and I'm working on that prior authorization required. Long story short, my health insurance went from really good insurance to a whole lot of red tape.

I have a long list of issues to discuss with the Neurologist: anxiety, panic, depression, migraines, back and neck spasms, constant pain in my neck, back and shoulders, barely able to turn head or look up and down. It's wearing me down. I don't want someone to hand me pain medication. That doesn't help me! Why am I being handed a bandaid? I need to know what the source of the problem is. All I can do is pray and wait at this point.

Saturday, November 14, 2015

Winter Blues

My life has turned upside down since my last blog. I've had one health issue after another. I had laryngitis for 3 months. It took several trips to the doctor to even get diagnosed. All I could do was take mucinex, drink a ton of water and do salt gargles. By the time I started feeling better my family began a huge transition moving from a townhouse to an RV. We left the city and opted for small town living. My husband is going through a huge job transition and we're preparing the best we can for reduced finances. Finances for living in an RV is comparable to an 800 square foot apartment in our area. The downside is the work involved to keep warm in the Alaska winter. Wintertime is not my favorite in Alaska. It's beautiful, yes, but it's the lack of sunshine that gets to me. The sun comes up around 10am and disappears behind the mountains around 4pm. We lose several minutes of daylight everyday. I've increased my vitamin D to 10,000 I.U. each night. I have a mini SAD (Seasonal Affective Disorder) lamp. All of my doctors recommend a SAD lamp and D3. Winter is rough of everyone. I'm already on my 2nd round of bronchitis this winter. It has been single digits and the cold air hurts my lungs. I'm convinced my lungs are more sensitive after Pulmonary Embolisms. I'm actually wondering if a history of Pulmonary Embolisms makes me more susceptible to bronchitis. I have survivor friends who also struggle with this problem. Other than my sensitive lungs I'm seeing a lot of improvement in my overall health since my last blog. It's a lot to update so I'll save that for another day.

Tuesday, April 28, 2015

Week Two (and a half)

I'm a bit late on this blog. My family packed up and headed to the mountains over the weekend. No service on our phones and completely off the grid. It's good to get away and enjoy nature, especially when you've been stressed out. Thursday was my 2 week check up with my new doctor. I was so excited because the entire appointment was just telling her how wonderful I felt! She said I looked like a whole new person. I've been sleeping, I've been warm at night, my skin isn't dry and cracking my hair is smooth and has stopped falling out in clumps, I've been less anxious and despite headaches and randomly falling asleep on the couch I can say I've felt better than I have in a long time. Keep in mind that healing is a process. After my appointment I switched from Diflucan to Thorne SF722 formula (5 pills twice a day) and started progesterone cream for day 14 of my cycle. I don't know if the switch in medication is making me feel bad, or if it's a change in diet, or I'm getting sick again. I haven't felt well for the past 2 days. Headaches bordering on migraines, muscle pain and cramping, and sorry for the TMI, but I've been very gassy. I have a suspicion I'm feeling bad because I ate sugar again. Sugar is a hard thing to quit. I had some roasted marshmallows while camping and I nearly felt nauseous afterwards. This tells me I need to stick to a low amylrose diet even more. I can deal with a strict diet if it makes me feel better. I'm frustrated by the sinus problems I'm having. I just got over a sinus infection and I feel I'm getting another one. After talking with my doctor and feeling great on Thursday she said I could take Zyrtec as needed (instead of twice a day) and slowly reduce my Flovent inhaler. Unfortunately, my eyes were red, itchy and watery and I couldn't stop sneezing all weekend so I couldn't stop or reduce either medication. My ultimate goal is to be on fewer medications. I'm not a fan of pharmaceuticals, especially the large amount I'm on now. My doctor believes once the Candida Overgrowth, Hypothyroidism, and Estrogen dominance are under control I should be able to quit most of my medications. I'm staying hopeful for the future even when I'm faced with set backs and feel like I've taken steps backwards. I'm going to keep going forward and take it one day at a time.

Saturday, April 18, 2015

Week One

It's been such a long time since I wrote a blog and I have a million ideas running around in my head. Let's start simple. Let's just start from the beginning...

I'm April and I started this blog to help people diagnosed with MTHFR. My original aim was toward pregnant women with MTHFR. Unfortunately it has become emotionally draining to talk with women who wish to become pregnant since I came to the decision I would stop having children myself. It was an incredibly tough decision, but for the sake of my health the decision was made.

I have thought over the years that I've been away how I could expand on my blog and my outreach. The name of my blog is "Surviving MTHFR". I've been surviving, but just barely. When I stopped blogging my health took a down hill dive. I had recurrent bronchitis every few months. I would have bronchitis, followed by a yeast infection, followed by the flu, followed by another yeast or bacterial infection. It was never ending. My immune system was shot. As soon as I was getting over one illness I would get sick again. I never felt well. This this also took a toll on my mental well being. I got very down and depressed because I was always sick and never saw the end in sight. I couldn't even function like a normal human being. I couldn't clean my house. I was exhausted just running to the store. I was fatigued, had headaches, constant allergies, couldn't sleep, my skin was dry, my hair falling out, I was freezing cold and couldn't warm up, my muscles seized up and wouldn't release. I had all I could take. I was always sick and in pain.

Depressed, stressed out, and in pain I tried a functional medicine doctor recommended by my chiropractor. This doctor looked at me and said "I can tell you're tired of being sick and in pain". She just read my mind. I was dismissed by every doctor I had seen for years. They all look at me with the most confused look on their face and say "I don't know what wrong with you" or "Lose weight and you'll feel better". Then I'm handed some new prescription and hurried out the door. However, this new doctor told me she knew something was wrong and she said "We'll figure this out". We'll figure this out! You mean one day I will feel better? There truly is a light at the end of the tunnel? Hallelujah!

First off we started with blood work. This showed I had Candida Overgrowth, Estrogen Dominance and Hypothyroidism. Along with low iron and low zinc. I started treatment last week.

●Diflucan for one month and a low amylrose diet for the Candida Overgrowth. 
●Westhroid for the Hypothyroid.

Week one has consisted of adding Diflucan and Westhroid. Bioidentical Progesterone for Estrogen Dominance is being reviewed by my Hematologist since I have a history of Pulmonary Embolism. Once approved it can only be used cycle days 14 through 28 and I'm waiting on a shipment with zinc and iron.

How do I feel? Much better than last week! I've fully recovered from the sinus infection and bronchitis I had last week. I'm feeling a bit tired and I think it's from the Diflucan and the Candida dying off. I was warned I could feel worse before I feel better. I'm having positive side effects as well, which include: sleeping very well, being a lot less anxious, muscle spasms improving, losing 5lbs and I'm not freezing cold every night. You have no idea how much it effects your life not being able to regulate your body temperature so this is a huge positive for me.

I'm feeling very hopeful about my treatments. It's important to have hope for the future, especially when it involves your health. I've made many changes over the years and I'll go back and explain a few at a later date. I'll be discussing diet in future blogs since I've gone gluten free, dairy free and low sugar. I'll also give some insight on what supplements have been helping me most recently. My plan is to give weekly updates on my new treatments, but bear with me if I miss a week. I need to get used to blogging again. Stay tuned.

Friday, February 13, 2015

Back to Blogging?

I've been gone for quite a while. I've gone through quite a few changes. I had to prioritize my life and blogging was not number one. I apologize to those who were looking to me for answers. I'm afraid I don't have them all. I'm just very good at Googling and cross-referencing. I find new discoveries exciting, but sometimes I find them overwhelming. New and overwhelming discoveries have surfaced involving my health. I needed to devote time and effort into getting my health restored because I was too fatigued and down with depression to blog.

Since my disappearance I have adopted a gluten free and dairy free lifestyle. I've been gluten free for 2 years now. I could probably write an entire blog on the health issues it has resolved. I made the decision to stay away from gluten and dairy just in time for a Hashimoto's diagnosis. I was unable to continue treatment with the chiropractor who diagnosed me. I have since moved 4,000 miles away which has involved starting my search for better health all over again. Six months ago I was diagnosed with sleep apnea. I've been sleeping with a CPAP every night. It slightly improved my fatigue issues, but seemed to open the door to other issues. I'm currently seeing a new chiropractor who is now suspicious of Cushing Syndrome. I'm on the search for a new doctor. A more holistic, naturopath type of doctor. I've traveled so far, but found myself on too many pharmaceuticals and too many questions. I suppose this is the start of a whole new journey.

Thursday, December 19, 2013


I have to apologize to anyone reading my blog and sending me emails. I have not answered emails in 3 months. I do not know when I will be able to start responding. I have taken an unexpected break from my blog and email due to health and personal issues. I do not know when or if I will return to blogging. Apologies to all.