Jump to content


Advanced Members
  • Posts

  • Joined

  • Last visited

Everything posted by Pos1964

  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 least in Jans case Elly
  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 them to my best knowledge :-)
  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 each PF day. Wishing everybody could have this surgery with equal positive outcome!!!! Greets Elly
  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 be patient and see if this is really working! Think positive! Elly
  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 if it works Keep you posted, Elly
  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 guess that is also a reason why his hits have "changed" in a positive way. Tyke, You really need that oxygen! It indeed is the #1 abortive medication for CH. Do make sure to get a non re breather mask along with it, the more 100% oxygen you inhale, the better! About Jan, he seems to be one off those rare persons where the CH is not responding fully on any type of medication or shrooms. Need to say, als I did above, no regular medication has ever decreased the amount of hits he gets, except for the shrooms. Ever since he is busting, taking Melatonin and Vit. D3, the hits are decreased by 50%!!!! For us that proves it works! The remaining 50% will hopefully decrease after tomorrow, when he gets his ONS surgery! Wishing everyone a lot of PF time! Elly
  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 medication to lower your blood pressure, maybe it has something to do with it. After taking it for a while, that feeling went away, hope that will also happen to you. Further more, Jan uses the Optimask CHfather recommended and what a great improvement that has been! Hits were aborted in less than 15 minutes where before with a regular mask they often lasted 45 minutes or longer. Vitamin D3 is also a great supportive, it seems that people who are suffering from CH have a short of it. Another thing we found out is food additives, here in the Netherlands we have the E-numbers and we know now that when Jan eats something which contains the E-numbers 330-336, he can count he will get hit within the hour. Maybe something to think about? Wishing you all the best and don't give up, shrooms do help!!! Elly
  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 to prevent that the CH would "mirror", if only the side of the CH was stimulated, there was a possibility it would start on the "healthy" side, they thought. Now they know that's not the case! However, the first six months both side will be stimulated, after those six months, the stimulation on the "healthy" side will be stopped. Jan's surgery is planned for June 17th, so approximately 6 weeks from now. We have good hope it will work but we do keep in mind there's a possibility it won't! A this moment he is only taking Verapamil 240 mg, 3 times a day and abortive medication if necessary (Imigran). We're convinced the truffles have had a great influence on how he's doing right now, so for every sufferer here on this site...hang in there, if it doesn't work the first time, don't give up! Jan's attacks are decreased since he took truffles, from 13 attacks a day, back to 4 a day. Keep faith and know there are a lot of people here who are experienced enough to listen to their tips, they really help! Have a great weekend and a lot of PF time all! I've uploaded a couple of pictures to show how the electrodes look like once placed. Keep you posted! Elly (Pos1964)
  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 horrible months he started with Verapamil and Deseril again and we thought that was supporting the effect of the truffels because he was doing so much better! In order to have the ONS surgery, he needed to quit the Deseril, he was very afraid the attacks would return once he got of of it but as I said before, no major attacks for almost 3 months now!!! We're very doubtful now about what to do, should he take the surgery or not? If he keeps doing so well, is it worth it to have such surgery, on the other hand, what if he decided NOT to have the surgery and the attacks come back.....with a vengeance! Anyway, we're enjoying the PF time he's having and keep you all updated! PF wishes to all of you!!! Elly
  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?
  16. Hi all, Back again with another update! Last Thursday Jan and I went to his neurologist to get info about the upcoming ONS surgery. We received a lot of information, asked all the questions we had and got the answers to it. It comes down to: - from March 14th. Jan needs to keep an online diary, the first 6 weeks he needs to fill in once a week how many hits he had. - the next 6 weeks he needs to do this on a daily base, whether he had a hit or not. - approximately between half June/July he will get the surgery which takes 2 hours. If everything goes well and he's feeling well, he can go home the next day already. - there will be no immediately effect, this can take up to 6 months. Depends on how soon they can set the correct frequency for him. - after that 6 months, he will get a remote so he can adjust the frequency himself if needed. He needs to participate the study for a total of 15 months. During that study, he will be checked on a regular base. We have gotten a lot of information and also been told that there's no guarantee it will work, a previous study showed that one group has had a reduction of 95%, another group has had a reduction of 50-75% and the last group had no effect at all! Let's just hope Jan will at least be in the middle Group, that would already be a huge improvement. Meanwhile he's doing better, he had to stop all medication except for Verapamil. We notice the hits are coming more frequent again but with the surgery in mind, he can cope with it. PF days to all of you, keep you posted!
  17. Pos1964


    Lost for words but excited inside!!! I my mind it's shining on, that crazy diamond and it all makes perfect sense
  18. In my opinion it all comes down to the costs and profit. I guess it would be hard for one individual to defend in a court of law that shrooms do work, circumstantial or not. Over here it's already "customary" for cancer patients to use marijuana as a painkiller, as long as it's prescribed by a physician. So we have the "legal" and "illegal" marijuana over here, although I really don't know the difference. I think the fact that Cluster Headache is still quit unknown by many physicians, is also the reason there is so little research about it. Still, I noticed that more and more doctors are getting more in to it. Patients that were first diagnosed with migraine are now getting the CH diagnose! Until there's more knowledge about CH, I think sufferers have to cope with it in their own way, whatever that is per individual. I wish there was a way to convince everyone about the positive effects of mushrooms! This site is certainly helping in that way!
  19. @Birdman, thank you, we also hope it will and he can be PF at least until the surgery. also hope your PF days will last a long long time @CHS No, I don't live in Canada but in the Netherlands and I also wonder how other sufferers are handling the cost of medication. It seems so unfair!
  20. My guess is he won't accept the invitation [ch128522]
  21. That......... Is really sick! Some people apparently have nothing better to do, it just shows the stupidity of those idiots!
  22. Yes indeed, it answers my question. Good to read you're glad you did it, I consider that as a positive outcome. I can only hope that Jan's surgery will have effect. I wish you lots of PF days in the (near) future
  23. brs82, Good luck on your first bust! I'm confident you have had the right advice from both Dan and CHfather. Hope to hear positive results soon!
  24. CHS, I won't discuss your decision not trying busting although I agree for the most part of what's written before. I do have a question though, since you have had 4 operations, which, as I understand from your story, didn't give any relief, would you have done this if you knew the outcome? I personally, can't imagine having such high risk operations 4 times, knowing the complications that come with it. It almost had cost you your life! I for one, wouldn't do it for a second time, not even for the greater good but than again, maybe that's just egoistic. Jan also knows that it's no cure and that for some people it works while others don't have any relief at all, just like you. We also live in a country with good health care so it would be easier sticking to medication. But....all medication he had up until now just worked for a short period, once his system got used to it, the effects got less. I'm really curious about your decision to have the surgery 4 times, it's not only for the greater good I suppose? There must be something in it that works for you! Elly
  • Create New...