Oh man! I have been suffering so badly for 4 days now. Usually, I will endure the Lightning attacks followed by a couple of days of constant pain every couple of weeks, but, these past 2 weeks have given me an abundance of sharp, painful lightening attacks that increased every day. Now, these last 4 days have been so bad! Two nights ago, I thought I was going to die. I woke that next morning so happy to be alive! So over joyed that I got to see a new day. The pain continued on and I am still suffering terribly now. But, I am a Warrior and I will fight this battle! This monster inside my head is trying to consume me. I will not let it. I will press on. When I was first diagnosed with CPH, my Neuro gave me Indocin. It worked, but, made me too sleepy and I was not able to communicate with others, so, I quit taking it. I have suffered immensly ever since. Its been hard, but, I cannot afford to sleep my life away. I have a Husband and 4 incredible sons who I enjoy very much. However, this past week has been so horribly bad, that, I took 1 Indocin every night for 3 nights now, and, it gave me much needed relief! Hopefully today, this CPH monster will bid me farewell for a while and I wont have take another Indocin tonight. I suffer all day, and then, it gets so bad by night, (because the Indocin wore off) that I have to take it out of desparation! Please Lord! Let tonight be different! Also, a while back, I wrote about a probable diagnosis of EDS (Ehlers-Danlos Syndrome), and, it turns out to be a fact. EDS is a genetic disorder that affects my connective tissues which causes my joints to dislocate all the time. I mostly suffer from the hypermobility form, but, I am waiting for my DR to find a local Geneticist who will test me to find exactly which type of EDS I have. Whats interesting about this, is, my ligaments in in my upper neck where my spine and Brain stem meet are stretched, causing pain and triggering CPH. If I sit wrong or turn my head too much, my ligaments in my spine will stretch and irritate my neck and shoulder muscles. Then, I tense up and my CPH increases, and, I end up suffering from multiple things at once! I think I need a neck brace so that I will be able to hold my head up without struggling! I know that God does not give us any more than we can handle, so, no matter how bad it gets, I know I will be able to fight through it. I am almost a black belt, and, can endure a lot! I hope that I can get back to training soon! But, as of now, I am healing my head and 2 sprained ankles along with a torn ACL, and no cartilage in my left shoulder. All of this is due to my EDS. Martial Arts strengthens my muscles which hold my ligaments in place better. That means fewer dislocations! I just need to get back to it. I WILL one day get my black belt. I know I will. I am a Warrior after all!
I have decided that sugar is my enemy in the truest form. August 3rd, 2011, I made a bold decision to stop eating sugar. Not just sugary sweets, but white flour which converts to sugar rather quickly. Since doing so, my headaches have decreased dramatically! It has been over two and a half months, and, not only have I lost weight, (which was expected, and, I wasn’t even really over weight to begin with) but, I have had a wonderful couple of months with hardly any CPH troubles! Coincidence?? Not sure just yet, but, I am definitaly in it for the long haul. Time will tell, but, I think I may be on to something.
Join our support group on facebook. Its loaded with information about CPH as well as, other rare headache disorders. Please click the link and sign up today.
Here you can upload a photo of yourself, and write about your CPH. Questions are welcomed too. its a place for us to learn about CPH, vent when we are suffering, and encourage one another. We cant wait to “meet” you. — Gina
I don’t really know if my CPH has eased up or if I have become tolerant to the pain. I still suffer from it on a daily basis but they don’t seem to be too bad. The short attacks anyway. The long episodes that last hours or days are still horendous. Each time I get one of those, it feels worse than the one before.
There is a possibility I may have Ehlers-Danlos syndrome. It has been known to bring about severe headaches. I am still waiting for the results to see if it is Ehlers-Danlos Syndrome, or if it is JUST Hypermobility. I will write again soon to let it be known either way.
I have no way of knowing when people comment on my blogs. Thanks to all who have commented and please know that I am grateful that you took the time to write me. It is so nice to know that I am not alone in my sufferings. I will try to check back more often so I can answer your questions. Gina
They are really bad right now! These attacks are distracting me again. For quite a while, they were somewhat manageable, but for the past month, they have wreaked havoc on me. Today, I could feel it in my shoulder, and in my jaw. I sometimes get hotflashes and slightly sweaty from them. It is so frusterating!! They have been jumping back and forth from left side to my right side! Sometimes I will be suffering from an attack and in the middle of it, it swiches from one side of my head to the other. Its crazy. Other times it stays on the one side, or will end up being on both sides at the same time. Forgive me for my rambling, but it makes me feel better to talk about it while its happening. I know that there are other people suffering from this. I am not alone. Writing about it while its happening makes me feel as though I am chatting with a fellow sufferer during my suffering. And, it lets you know that you are not alone while you suffer.
I will get through this. I always do. Time for some sleep. Maybe it will magically disappear by morning.
Amazingly, the last 6 months have been easier than the last 6 years! I still get the attacks, but not as much as I was. This is normal. They will increase again, but I am enjoying this relief while it lasts. I get about 2 to 12 lightning attacks a day. Two weeks ago, I went 3 whole days without anything at all. Those were amazing days!!! Last week, I had a constant attack that lasted 8 hours, followed by a dreadful “wiped out” feeling. It is exhausting dealing with this disease. You never know when its going to attack. Having fewer attacks has allowed me to recognize the uniqueness of this disease. I am normally, a very animated, and alert person. I have no problems carrying on a conversation, and I am quick with my thinking and am very articulate. When these headaches strike, I become quiet, and have a hard time finding the right words to say in a conversation. In my mind, I know exactly what I am trying to say, but it is as if there is something blocking those words. Like something wont let them process from my mind to my mouth. Its confusing when it happens, because I know what I want to say, but part of my mind has been locked up, and I cannot say what I want to say. People look at me like I am strange. If I try to explain my head problem, they get uncomfortable and ease their way out of the conversation, leaving me alone, and embarrassed.
However annoying these headaches become, at least I know that I am not the only one who suffers from them.
The last really bad headache that I had was in November 2008. They have slowed down a lot. I get 2 maybe 3 small attacks a day but that is it. I am so happy! I am able to get a lot more done every day because I don’t have to stop and wait for my head to calm down. I don’t know how long this will last, but I am sure going to enjoy it!
Yes, I actually went TWO WHOLE DAYS without any attacks! Amazing but true! There is definitely a seasonal change in me. They decreased this time last year too, so, if it goes the same way as last year, then, they will stay at a minimum until about October. Lovely!!! I have over the last year, been able to function better during an attack than I was able to before. This is good, because every year they are a bit worse than the year before, so if they are more intense every year, and I am able to endure a little more ever year than the year before, then thats all the longer before I will end up having to take medicine and thats a really good thing.
This last week was the first time that these attacks were felt in my nose. have you ever went swimming and got water up your nose? It felt like that. It was as if the ‘lighting attack’ ended in my nostril, and it hurt. For 3 days it was on my right side, and then it switched to my left side and stayed there for about 2 days. One after the other. It began in my head and radiated down and out through my nose. The intensity had increased too. They are more painful now. My eyes water more from it, and so does my nose. I get them every day (about 2-10 a day) but then I go through an episode of twenty to thirty a day, and they are of greater intensity and pain. It is as if I have both Episodic Paroxsysmal Hemecrania, and Chronic Paroxysmal Hemecrania. Hmmm, I wish there was more information. Come on Doctors, we need you to figure this out so we can remedy it, and maybe even prevent it all together. Were counting on you!!