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Pos1964

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About Pos1964

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  1. Indeed Jan had the ONS surgery @alleyoop, I keep reading the story's of all members here on the site. Jan has been lucky the surgery is a great succes, however, the CH is not cured, we are very aware of that but as long as the device helps, we're enjoying the PF time he has and hope it will be a long long time @CHS, sure you can ask a fellow survivor in Sweden if he or she wants the injections, just let me know if they're needed! Elly
  2. Didgens, The neurostimulator, as they call it, is the same as a pacemaker. So yes, there are some limitations but very minor. I don't know if Jan can't get nearby any slot machines (yet) but what we do know is that the device will defenatly go off at airport gates. That's why he recieved a card at the hospital which contains a brief explanation of the device and the serial number of it. It is also not possible to get MRI scans, so he has to keep this card with him all the time in case something happens to him or is going on an airplane. Furthermore, there are no limitations at all, at lea
  3. Thank you all for the good wishes, it's so amazing how this surgery has changed our lives in so many ways! @Didgens, yes, Jan is part of the study group in the link. The first 6 months, the device will be set every 6 weeks, stimulation will change in the areas of his head. After these six months they will know exactly what's the best setting for him personally. Untill now the settings of the stimulation have been changed 3 times, both left and right, but all settings are succsessfull, one more than he other but it works! If you have more questions, please let me know, I'll try to answer
  4. A fourth help to prevent attacks is Vitamin D3, just have your husband let his blood checked if his Vitamin D3 level is low, this really works also! But just like Jeff said, oxygen (preferabely used with the Optimask) is THE #1 treatment for aborting attacks, CHFather, who is in my opinion, an expert in this can tell you anything about how to use oxygen the best way. Lots of strenght and hopefully a quick end of this cycle. Elly (also a partner of a sufferer)
  5. Hi didgens, The exact name of the surgery is "Occipital nerve stimulation" (ONS), he had the surgery in Erasmus Medical Center, the Netherlands, LUMC "Leiden University Medical Center",is leading the study. The name of the doctor at LUMC is Dr. Ferrari. Earlier in this post, I've uploaded a picture that shows how the device is placed in Jan's head and body. Here are two links which describe the surgery. Hope you find there what you're looking for. http://www.ncbi.nlm.nih.gov/pubmed/23720502 http://clinicaltrials.gov/ct2/show/NCT01151631
  6. Here I am with a short update about Jan's surgery. We're in the 8th week after the surgery now and he's doing great, no...... more than great!!! Since the surgery on June 17th, he had only 2 attacks, well we can hardly call them attacks because they didn't got higher than a kip 3!!! Sometimes he has all the symptoms of an attack, runny nose, teary eye etc. but NO PAIN along with it! So the conclusion this far is that the device is working for Jan :). We're living a whole different life now but we always remember how it was before surgery, so we're trying to get the best out of eac
  7. Thank you for all the good Luck wishes Jan has been released from the hospital this morning, very tired still but doing well. I'm almost scared to say/write it out loud, but he hasn't had any hit at all since the surgery, not even a shadow! Off course this is much to soon to speak of a great success but this PF time can no one take away from him anymore We have to check the wounds and his temperature very closely to make sure he won't develop an infection, if that does happen, the whole implants must be removed but I have the confidence that won't be necessary Now we'll just have to
  8. @Chs the blood and band aid on his back are the insicions made to pull through the extension cable, the battery is placed in his abdomen, he has an internal pacemaker. @MG @Bejeeber thank you for the supportÂ
  9. Hi all, A quick update, today Jan has had his surgery, it took two hours longer then they've said but I didn't ask why, was just glad to see him awake . For the next six weeks he's not allowed to bend, stretch, kneel or climb. The electrodes need to "suture" by scar tissue. Coming 24 hours he has absolute bed rest. The neurostimulator is already set also, both left and right. Because the surgery is still a study, we're not allowed to know the frequency. For now he's doing well and if there will be no complications tonight, he will be home tomorrow. Now we'll just have to wait and see
  10. Interesting article CHfather, we've heard that before on the forum but now it seems to be proven. Never thought of it before tough until we read it on this forum. And if you think about it, it does make sense. When temperature is changing, like it is now here in the Netherlands, Jan gets hit more often. Although I must say, since he started busting, they are kip 7 at the max and he can quickly abort them with oxygen. Occasionally, when we're not at home, an imigran injection. When we read about the melatonin here, we decided to buy some supplements which he is taking every day now. I gue
  11. Hi Tyke, Welcome to this site, I haven't been around for a while but wanted to react on your last question about Verapamil. First let me tell you I'm not a sufferer but the partner of a sufferer. We found this site last year when my partner, Jan, was in a cycle from hell with approximately 13 hits a day, kip 7 to 10. We've received a lot of support and great tips here! Jan did bust and it worked, eventually he went down to 6 hits a day. But now your question, yes, Jan also experienced that agitating feeling from using Verapamil (he takes 240 mg 3 times a day) It actually is a medicatio
  12. Here in the Netherlands, all food is labeled with E-numbers, each E-number stands for an artificial food additive. For example, if Jan eats something with E-numbers E330-E333, he can count on an attack, these numbers contain citrates & tartrates. Also with E620-E627 glutamates & guanylates and E420. This way it's much easier to avoid any food that contains above additives. First you have to find out which you respond to though. The full list can be found here: http://en.wikipedia.org/wiki/E_number#Full_list
  13. UPDATE! Hi all, it's been a while, Jan is doing so much better the last few months, the CH's have reduced to 4 a day, still a lot but a great improvement compared to the last few months of last year! Yesterday we went to the neurologist in the hospital where he will get his ONS surgery. We received a lot of information, they learned a lot from former studies, for example, on the first group of sufferers who have had the surgery two years ago, they stimulated both left and right occipital nerves, regardless the side where the CH is located, in Jan's case on the right side. This t
  14. Hi everyone, hope you're all doing well, Here's an update on Jan's road to the ONS surgery. Yesterday we started with the online diary he needs to keep for about three months. The first 6 weeks he needs to fill it in once a week, two web forms. The second 6 weeks, he needs to fill it in every day. After that the surgery will take place but..... Ever since he took the shrooms last November/December it's getting better and better. The last log we have on our own diary is from January 14th, after that he hasn't had any major attack, just some shadows now and then. After those two horrib
  15. @CHS, I made the chart myself , I will PM it to you (if possible) asap. @birdman, Hi Birdy , thanks for your great support, sure we will keep you all posted. How are you doing these days?
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