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After thought here Kris. Have you seen an Opthalomologist? I mean the real eye doctor, now the one who just fits glasses for you. It might be a good idea if your insurance will cover it. Since you have other issues with regard to your eyes, I would definitely suggest seeing one. I have Wet Macular Degeneration. It strikes the center of your visual field and blurs it out completely. Caused by an over growth of blood vessels in the macular. I have been seeing a Retinal Specialist for it for about two years now. Well, I went in one day with blurry spots at 10 and 12 on the clock in my CH eye. That eye had not suffered from WMD. He announced that that particular type of WMD comes with migraines!! Oh happy day. So, while it is billed as one thing, headaches can cause vision loss too. Sucks. So, I encourage you to see a specialist for you eye. You need it so badly!!! I would hate for that to get left by the wayside in your search. I had never heard of it until this summer. Hopefully you still have an eye specialist in your arsenal of doctors.

I don't like speaking ill of someone but I went to see Dr Shevel in 2013 and left the consultation in tears. After suffering with clusters for many years, I stumbled across Dr Shevel on my local radio talking about his surgery and hope sprang up inside of me. I contacted his clinic and waited a few weeks till he came to my city. When I went to see him, he asked me what was wrong and I told him about my history of clusters. He seemed tired and uninterested and his answer was that I needed surgery and that it would cost round about R70 000 in total (That is our local currency) which medical aid does not even cover. No tests, no checking me out, nothing. I told him that I wasn't on medical aid and my family couldn't afford that type of money and he said a plan could be made. I will be emailed a quote. As I was in a cycle at the time, I asked him for a script for the medication that my neurologist normally gives me and after I had told him, he said he needed to read up on Verapamil and will email the script to me. I saw him on the Friday and only received the scripts on the Monday. For someone that 'knows' the pain that we go through, there wasn't much urgency to get the script to me and I suffered with many beasts that weekend. (Still have the emails btw) Anyways, I received the quote which I declined and promptly received a call from the clinic offering a smaller surgery at a cheaper cost (About half the price). Apparently they really wanted to help me. I declined this and went to see my old neurologist. When I told him about the surgery, he said that I'm not the only person that has been fooled. Dr Shevel - Your procedure may or may not work but I will never forget the consultation that I had with you. Yes, you may help thousands of people but you didn't help me and your lack of empathy was soul crushing. I am so grateful to people on sites like this that look out for one another and can identify with the pain that we all suffer with. Verapamil has helped me keep my clusters in control and this past week I went for my Vitamin D3 blood test for the first time and my doctor found that my level is very low. Today I started the D3 regimen and that's all thanks to sites like this.

My daughter, a smoker, was terrified at first of having O2. Now, she smokes practically right next to her tank, as she's been doing for five years. Not while using it, of course, but the rest of the time. Not recommending that practice; just agreeing with spiny that if you don't do anything completely crazy your risk is minimal.

All the evidence I need is in my head ... or rather ISN'T anymore !! ... for now anyway. I do hope this is a step in the right direction. The thought of busting is scarier than the next attack to some people and that is if they can even acquire the medicine. Seeds may be the answer but even that is daunting for some folks. Seems we are programmed to look for the answer in an easy to swallow pill. That would be a dream but the cynic in me feels big pharma will find a way to make a cure tough. Anxious to read the study results

The psilocybin study currently underway at Yale Medical School, long lobbied for by ClusterBusters, is going to give us some kind of hard evidence.

Don't give up. Keep calling around for oxygen and have your doctors office call the most receptive oxygen supplier. If all else fails, get a welding tank. I was hesitant to bust but did and it has been amazing. Look into the seeds. Many of these things seem crazy to consider but desperate times call for desperate measures. I asked many doctors about "busting" and treatment alternatives and they all like to use the word "anecdotal" when describe the success rates. Until we get some serious funding and legal changes, everything result we have will be anecdotal but the fact remains, many people have had dramatic successful results. Stay strong. You will figure it out and it will get better. I was on the verge of the "ultimate solution" a few months ago. I was in tears daily. Folks here talked me off the cliff and I kept eating, learning and coping. Now I virtually pain free with minor occaisional hits and shadows. There is hope. Been your own best advocate but be sure you are 100% you are actually treating CH and that there is nothing else going on. Good luck.

Thank you Jon, I wasn't looking to treat the headache. I figured if the medicine the doctor was prescribing wasn't working it would be doubtful that Botox would. I thought that the injections might help with the jaw pain though. Spiny - I am all about the research as I am a researcher myself. Placebo or not I will continue on. I won't try the injections with any one that isn't licensed or experienced. I was looking to see if anyone had any experience with the injections and the nerve pain relief in the jaw area. My teeth are so sensitive, chewing on anything, even gum is painful. Brushing my teeth hurts so if Botox would provide relief in that area I would be grateful. I won't do anything without first checking with the clinical trial. All interesting things to consider. I think I might wait and see how the research study goes and if the jaw pain continues past that. I have no desire to be back on prednisone after being off of it for 18 years.