barrowm34
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I Love CH.com!
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I apologize for the lengthy post in advance but I hope all of you read!!
Hello everyone. I am 27 years old and for as long as I can remember, I have suffered from the excruciating pain of cluster headaches just like all of you. It is almost hard to talk about it with other people that just don't understand so I am very thankful to have stumbled on this website. My cycles almost always start towards the end of the summer when the weather starts to cool down. It almost becomes a countdown and the anxiety starts to kick in because I know that its coming.
This year I decided to take a more pro active approach to try and see if I could manage the pain. I am currently on my 8th pain free day and hoping that the steps I took might help somebody else. obviously everyone's body doesn't respond the same way to certain things but I'm sure you can all agree that when the pain hits you, you will try anything. In the past the only thing that has helped me are sumatriptan injections. I tried the pills and nasal spray but being 6'3'' 260 lbs, my neurologist suggested that I may be too big for the meds to start working quickly enough to stop the headache from coming on. if you are a bigger individual and the pills/nasal spray just don't work for you, ask about the injections. every year my biggest issue is always that my insurance only covers a certain amount of shots every 30 days. to be more specific, they only cover 4 shots. 4! everyone here knows that 4 shots can easily be used in one to two days.
The first step to my proactive approach was during the time off of my cycle, I would stock up on shots every 30 days. my neurologist was nice enough to prescribe me 40 shots so as soon as I was in the clear of the 30 days I would call in the prescription to stock up before my cycle hit and they do not expire for a while. As the time started getting closer to when my cycle usually starts, I cut out alcohol and started to cut down the intensity and frequency of any workouts in the gym. I looked throughout my cabinet for any meds that my neurologist had prescribed for me the previous cycle and saw that I still had Verapamil 180MG tablets(supposed to stop the headaches from coming on all together when taking them on a daily regimen) and Indomethacin 25MG tablets(supposed to abort Headaches as the sumatriptan shot would.)Neither of these have ever worked for me in the past but keep in mind that I usually don't start to use them until I am fully in to my cycle and running out of options.
The second step is what I felt has helped me the most in possibly ending this cycle early and what I did was start taking the Verapamil on a daily basis before my cycle even started. I feel that the best thing to do is to be aware of when you cycles usually begin. for the first few days I started with just half of a 180mg tablet once a day, then 1 full pill once a day and now currently doing one pill twice a day. As my cycle started to begin mid to late july I noticed that my headaches were still coming, but the pain (always the left side for me) was very mild. I continued with the Verapamil, along with drinking a gallon of water a day (which I do anyway) and no alcohol.
Now the third step that I took, I understand everyone may not agree with and there are many studies that show that it only works for a small percent of people but I figured I would try it anyway. like I said and i'm sure you all agree that when the pain starts, you will try ANYTHING. While my pain was coming on pretty mild compared to previous cycles, it still was not tolerable and the anxiety had started to kick in at an all time high in fear that the full pain would eventually kick in. I had a pretty decent stock of shots and oxygen(oxygen rarely helps me) but like I said I wanted to try something new this year and decided to try marijuana Now I do not usually smoke weed besides a few times throughout my college years so this was not my excuse to get in some extra recreational smoking. As soon as I felt a headache come on I would smoke, similar to using an injection at the onset of a headache. I can honestly tell you that not only did it help me with the anxiety but it completely aborted my headache and they would not return for the rest of the day. Now keeping work in mind, I will admit that this was a huge risk that I took but I am willing to try anything to not have to go through the hell that I did in the past. As of right now, I have not had to smoke since last Wednesday for the simple fact that I have not felt any pain or headaches coming on since then! I have about 10 Verapamil pills left and I will most likely get a refill on the prescription and continue to take them until it gets around the time my cycles usually end which is mid to late September. I will also continue with a gallon of water a day(sip throughout the day), no alcohol and limiting the gym to only about 2 times a week.
The last step that I took is every morning even before breakfast I drink a Rock Star energy drink (sugar free can. It is a white can) The reason for this is that I have read multiple times that Taurine helps with CH and this drink has 1000mg of Taurine.
As I said in the beginning of this post, everyone's body will not respond to the same things but I wanted to share what has helped me and I hope that this information can help out someone else. As hard as it is to stay positive during a CH cycle I hope that all of you can stay strong and always understand that you are not alone. obviously the information I put in this post is not the secret answer for CH and even if you decide to disregard everything that I said, all I ask is that you stay optimistic and be willing to try anything. Talk to your doctors about a different approach and you may stumble upon something that works for you. Best of luck to all of you!
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