Just want to be normal again.
Growing up I was never sick. I never experienced PMS and rarely went to a doctor. I had great vision and was thin and fit.
When I was 20 I had my daughter and something drastically changed in me as soon as she was born. I was sad and stressed. I always felt like I had a fever. I started noticing that when I drank alchohol it wasn’t fun anymore and I seemed to get sick easily. I started getting headaches that would leave me laying under my desk at work. I didn’t know what was happening but I thought it had something to do with the child birth. I thought maybe they did something wrong with the epidural or my body didn’t react well to the stress of the labor causing damage of some sort.
I started taking medicine when my daughter was about 1 and I recall falling asleep because of the medicine and waking up to her wondering around the house. This scared me and I refused to take the medicine anymore. I had MRI and MRI, saw doctor after doctor. I was convinced that her father caused me so much stress that it caused the headaches and I had left him when she was 6 months old.
For the next 10 years I was with my new boyfriend who I married. I tried so many different medications and have researched the topic enough to talk to anyone about anything scientific regarding the possible reasons for having migraines. Even knowing all of this and doing everything I can think of hadn’t stopped them.
Eventually I divorced my husband and I recall that a strong reason was because I would take medicine and pass out in my daughters bed with her and he wouldn’t check on me. I was afraid that one day I might not wake up and she would be the first to find me.
So I found a more supportive guy and started dating him. Knowing someone would be there to look out for me when I was unable to was a giant stress relief. I starting trying other things besides medicine. I tried hair analysis, and took tons of recommended expensive vitamins, deep muscle massage therapy, chiropractors (3 to be exact). I had already seen many doctors and a nuerologist so I found one main doctor to try and go over everything. I had him test me for lime disease, celiac, food allergies, outdoor allergies (never did get the chemical allergy test which is still on the list). I basically researched the heck out of anything I could and had him test anything I could think of. He let me and we didn’t find anything. The only thing we found is that I’m allergic to pretty much everything outside. I thought allergy pills and nasal sprays would stop the migraines and while they helped it didn’t work. When he put me on Topamax I dropped from 130 to 112 in less than a month. I also ran 3 miles a day 4-5 days a week to help me fight the migraines (sometimes this caused them but I still did it). After I started Topamax I stopped running. I had zero desire and was tired all the time and never ate. After a couple of months I went up to 140lbs. I was never the kind of person whose weight changed so dramatically like that. I stopped the Topamax within a year as well as the anti depressants and everything else and just stuck to eating all organics, avoiding gluten as much as possible and taking relpax when a migraine hit. I got to the point that I couldn’t drink alcohol at all without vomiting (even a sip) and couldn’t eat chocolate. I had tried going off of caffeine for over 6 months and it didn’t help. I tried the food elemination diets for months at a time at least 3 different times. I’ve tried eating pure dark chocolate in small amounts to prevent and that made me immediately sick (seems to work for some). I did accupunture out of pocket, didn’t help. I kept a normal sleeping pattern and that didn’t work so well either. After many many years of taking relpax I am finally able to get a 90 day supply (they typically will only give you 4-6 or so a month depending on insurance).
About 3 months ago I finally got Botox for Chronic migraines. I knew I couldn’t afford it but they were billing me and not asking for it upfront so I took the risk. The shots felt good. After a couple of days I felt good and I went out and drank and felt great. I tried this again (the drinking) and it didn’t work so I don’t know what that was. I still found that I got migraines during my period week (I don’t get my period just the symptoms; on an IUD to reduce PMS which makes my migraines 100% horrible). What I did notice was all the tight feelings that usually came before I got a migraine were gone, they were numb feelings which were better. It felt weird but it was a good trade off. I had also tested my hormones to see if they were out of balance. The OBGYN refused until I told her my story. I found my testosterone was very low and got a cream from a compound pharmacy. I started to break out A LOT and I had a couple of episodes were I completely flipped out. I wasn’t feeling any better so I stopped that.
The Botox helps!! Its not a cure all but it certainly does help until something better comes along. The issue is that its VERY expensive. I just lost my job and got a bill for $1200. I have moved out of my boyfriends because he can also not deal with the migraines. He calls me negative and says I just sit in corners at bars and don’t socialize. Its difficult to do that when you can’t drink, can’t have fun because you are in pain and no one knows how hard you’ve tried just to be normal. Now I can’t get the Botox and thank god I was able to get a little relpax until I get another job and insurance.
I’ve also tried networking with previous coworkers and they verbalized that they are concerned for how much work I had missed
Just want to be normal again. 13 years going on 14; lost relationships, lost career opportunities, lost time with my daughter. Longest pain free period since I can remember – 16 days from Topamax.
They need to make BOTOX easier to afford!