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Showing content with the highest reputation on 09/20/2017 in Posts

  1. 2 points
    No, NO, a thousand times NOOOOOO on this bozo. One quote says it ALL...."said he'd have to read up on verapamil" THAT is standard treatment.... for YEARS!!!....any competent headaches specialist (and many neuros or even GP's) would be all over that script. Sheesh...this pisses me off..........follow the money
  2. 2 points
    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.
  3. 1 point
    This is our group photo. A conference report will follow soon. Please feel free to give us your personal review of your experience if you attended. We'd love to know about your experience.
  4. 1 point
    Thank you guys for all of the information I am very hopeful that me and my care team can get these under control. First positive outlook I have had in a long time was meeting with my neurologist once he saw CH in my chart he immediately went to business with what we were going to do to try and manage mentioned several studies that have shown promise in treating. I can honestly say I'm glad I ended up with him because he seems very knowledgeable and on top of things he has even contacted me yesterday and today to see how the attacks have been since nerve block and since I have seen some improvement he squeezed me into his schedule to do two more of them 72 hours apart. I won't lie since this last cycle started I have lost my job due to the debilitating pain I am in daily am on the verge of losing my significant other i honestly had lost all hope and was ready to give up. I'm glad a family member found this forum and recommended it to me I'm starting to feel like there is hope that I may one day be pain free and get my life back. .... Update the beast is back and angrier than ever after two days relatively mild with both attacks and pain last night he reminded me that he will not go easily between the hours of 12-6 am I had a total of 4 occurrences of him showing his ugly face pain levels ranged from a 6-8.5 at the worst. Unfortunately o2 is not scheduled to be delivered until this afternoon. Thankfully my neuro already had me on schedule for this morning to do another nerve block so hopefully this one provides me more lasting relief
  5. 1 point
    It is very common for CH cycles and frequency to change. I have changed from chronic to episodic more than once, cycle length has changed many times. I'm chronic now and find it almost easier! My attacks seem easier to abort when chronic. Also, I can have a cocktail with no effect. When episodic that is not possible. Oxygen is my #1 abortive, I stop up to 97% of my hits with O2 only. Used it this morning. They posts above are giving you good information. Anything we use to stop an attack must be used as quick as possible. Waiting to see if it's a bad one can result in failure to abort . The fight is our own so we have to take charge of our own treatment.