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littlemountain

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  1. Oh, and I did have an MRI done just before all of this started and it showed nothing out of the ordinary.
  2. So I saw the neurologist today. He did not seem to know what the pressure could be, though he seemed confident it would resolve itself. He told me to keep up the prednisone taper, the topomax 100 mg, and verapamil 320 mg. He actually brought up indomethacin on his own but thought it might not be appropriate at the moment with all the other stuff I'm on. He has booked me for an appointment in early July to try some Botox injections, as he commented that my symptoms have shifted somewhat towards more migraine-like ones. It would have been nice to get a firmer diagnosis. I wish would've emphasized the pressure more, I have a bad habit of downplaying my symptoms. For now at least I have seven days off prednisone and I can finally sleep. I also have anti anxiety pills now so my mind isn't wandering too far to dark places. I'm just gonna use this time to rest, and hopefully heal. The headaches have abated since Tuesday (knock on wood). I just hope things get better, I literally wasn't getting sleep because of the pressure.
  3. I mentioned the indomethacin btw but long story short was I had to go the ER for the pressure and they put me on the prednisone which is also a powerful anti inflammatory. I don't think my doctor would've been comfortable with it anyways, but will see what this neurologist has to say about the pressure.
  4. Saw my doc today. He really didn't know what to do as my symptoms are so atypical. The pressure was becoming constant, I was being hit with waves of nausea, just felt like the topamax was blocking out endless attacks. He has me on a prednisone taper for now which has given me some peace. Thankfully, I have managed to set an appointment with a neurologist I saw last January for tomorrow. So that's made me quite happy. I've made a bunch of notes, ready to have him make a diagnosis.
  5. Ok, thanks for the suggestion Spiny, I really appreciate it. Hopefully the doctor can help me. He usually boosts my spirits. I don't think the topamax is doing much anymore, had two bad hits today already. Ugh, so tired...
  6. Thanks for suggestion Spiny and CHfather. I have an appointment with my family doctor tomorrow, who may be open to this idea. In Canada here, or at least Ontario, seeing a neurologist is a rare occasion, so I doubt I'll be passing the idea by them anytime soon. This is really my first time using topamax at high doses. But I do remember having pressure in my nose last time I was on it and when I was just on verapamil. The difference is that now the pressure moves from my nose to my ears and my neck and my skull. And it only seems to build up in the afternoon. It's a very odd sensation. It's better then the headache but it's very distressing at the same time.
  7. I've tried hyperventilation with oxygen, deep breathing, proper posture, using it for longer than half an hour. Sometimes it works. Most of the time it just seems like the attack is just too strong. I'm on the d3 with all the co factors. Last September it seemed to help take off some of the edge, as none of the attacks were really bad, zolmitriptan tablets or oxygen quickly aborted the attacks. This time though, it might just be reducing the frequency of the attacks, but the intensity is quite high. I usually don't like moving around during an attack. Often I want to lay down, even though this increases the pain. During this latest cluster, I've also been prone to random bouts of nausea, either when I'm in an attack or when I'm not, and they're quite intense, I've vomited on a few occasions now, and I'm the kind of person who will avoid vomiting at all costs.
  8. Hi. I'm going through what seems like a cluster period. I was diagnosed a few years ago by my family doctor and a neurologist but I've always had a few atypical symptoms, I was wondering what people here think. My cluster periods are fairly random. They appear at all times of the year, although spring and fall are somewhat more common. They sometimes follow a 15 month cycle, but my recent bout comes eight months after my last one last September. I get shadows. Then the pain comes fairly rapidly. Sometimes coffee or energy drinks and eating can abort it. Imitrex autoinjectors usually work. Oxygen at best just takes the edge off, even at 25 LPM with the ch mask. Verapamil seems to work at 360mg and topomax at 100mg. I always get the pain in the right side behind my right eye and it radiates out from there. Here's where I'm different. I never get the tearing or drooping, although my nose gets stuffy. In fact my nose usually feels like a balloon is being inflated inside of it. My attacks are fairly regular throughout the day and night but they last forever, and I mean forever, I usually get one at 3 pm and it won't let up until 3 am.
  9. Thanks for the quick reply. I have been thinking about going to the conference, I just don't think I'll have time or money (I'm going back to school this fall). I have also been considering busting options, and I'm hoping to pick up RC or HBWR seeds tomorrow at a shop in Toronto. That way, I can start using them soon, as you recommended. I have also read about extending the imitrex injections,I just have to get used to injecting the imitrex in a more "manual" way (I'm not big fan of needles). Thank you for the tips on the Facebook groups!
  10. Hello, I'm from Canada, southern Ontario to be specific, near Guelph. I first developed CH when I was 18, I'm almost 26 now. I have episodic CH, though over the years, my cluster period has increased from just a few days per year, to over a month per year. I'm posting here because I thought it would be nice to talk to people with CH. I find it pretty lonely and frustrating dealing with an illness that is poorly recognized and understood by the public. I find it annoying explaining to people that I have an illness that is "actually pretty serious" even though it's "only a headache". Having read many posts from people with CH, I think my story is pretty common. For the first few years, I was misdiagnosed with sinus headaches, and I had to deal with the headaches with ineffective medications while studying at university (still not sure how a managed to keep up with my school work during these early cluster periods). Finally, when I was 21 or 22, another doctor diagnosed me with CH. Although it was a relief to finally get a conclusive diagnosis and effective medication, learning that CH was poorly understood and as of yet incurable, did little to boost my spirits. I began to see a headache specialist around this time too. But, apart from prescribing me imitrex, they offered little comfort. The specialist never seemed eager to talk about treatments, nor were they available much for appointments. They prescribed me oxygen, but I didn't know how to use it properly. Since finishing my degree, I moved back home and got a new doctor who is far more understanding and helpful. He has prescribed me imitrex, verapamil and oxygen. During my last cluster period, the verapamil broke the cluster period, but the side effects left me feeling ill and with minor headaches. I'm also worried about the long term effects of using verapamil later in life. Through this website I have become far more confident in using oxygen (I also bought the CH oxygen mask). Fortunately, I haven't had to use oxygen yet on a full blown episode (and hopefully will never have to). I also began the vitamin D regimen last July after my last cluster period last June. I haven't used it for a full year though yet, so again, I'm not sure how effective it is. I have noticed that I've been having far less minor headaches than usual (I've been using far less Aleve and Tylenol than usual). I've also think my immune system has become far more robust. Whenever I begin to feel sick (cold, flu, etc), I always feel almost completely better the next day. My last cluster period really freaked me out. I guess it never really hit me before then that I would have to deal with this illness for the rest of my life. I began to worry about the high cost of the medications (imitrex in particular), how I would be able to keep a job when I would be ill for more than a month each year, passing CH on to any possible offspring, the effects of verapamil and other meds on my body, and dealing with the sheer fright and pain that comes with CH for years to come. It got to the point where I spent hours sitting on a chair in my basement away from sunlight in complete stillness, as I believed I could fend off the headaches by doing this. Eventually I asked my doctor to prescribe me anti-anxiety pills and I've been on anti-depressants ever since. I've been doing well for over half a year now, but I find that as I move through my historical cluster period (anywhere between January and June), I find myself worrying more. I have imitrex, verapamil and oxygen ready, but the thought of going through the pain again terrifies me. Yesterday and today I've been having pain flashes on the right side of my head, giving me more cause to worry. I feel so sorry for everybody with this illness. It is so terrible. I can only hope that all are able to find a treatment that brings them relief and peace.
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