Jump to content
ClusterBusters

81007

Advanced Members
  • Content count

    18
  • Joined

  • Last visited

About 81007

  • Rank
    Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. 81007

    Chronic Cluster a Year OR Longer?

    I had a remission of two months. I overdosed on folinic acid. I took ten capsules of 400 micrograms with 6 micrograms of B 12. I took them at 8PM and woke at 2AM to vomit. It got me two months of no CH's. Folinic acid is one medication of a toxoplasmosis treatment protocol. Folinic acid is the primary ingredient of Leucovorin. Toxoplasmosis treatment link below https://www.hopkinsguides.com/hopkins/view/Johns_Hopkins_ABX_Guide/540558/all/Toxoplasma_gondii
  2. 81007

    Risk / Dangers of Oxygen?

    Just get an oximeter. It will tell you if get too much oxygen. https://www.walmart.com/ip/Zacurate-Fingertip-Pulse-Oximeter-Blood-Oxygen-Saturation-Monitor-with-batteries-and-lanyard-included-Navy-Blue/757187983?wmlspartner=wlpa&selectedSellerId=0&adid=22222222227096424698&wl0=&wl1=g&wl2=c&wl3=212822171008&wl4=pla-408475254437&wl5=9029047&wl6=&wl7=&wl8=&wl9=pla&wl10=8175035&wl11=online&wl12=757187983&veh=sem&gclid=EAIaIQobChMIvqao4vyf5QIVRr7ACh1bzw70EAQYASABEgLrc_D_BwE
  3. 81007

    Chronic Cluster a Year OR Longer?

    I tested below 3 Igm Ige. Active infection is considered above 7+. My hypothesis is I am simply hypersensitive. I will post results if I am successful or not.
  4. You join the military. Become injured. They will help you.
  5. 81007

    Chronic Cluster a Year OR Longer?

    I have been chronic for over a year. I am now doing a trial of pyrimethamine, since I believe I am simply having arterial inflammation due a protozoan call toxoplasma gondii. Toxoplasma gondii is parasite transmitted mainly household cats. My hypothesis is that some CCH sufferers are having an inflammatory reaction to this parasite. Most humans are asymptomatic. This parasite can infect most mammals including farm animals such as sheep, cows, etc.
  6. 81007

    Ketamine Infusion

    I had a ketamine infusion for chronic cluster headache. The experience was quite pleasant. I had no real side effects. About 2 hours after the IV I had a pretty bad CH. I was under the impression a treatment would stop the headaches. The infusion lasted about an hour. Now I am finding out that for a remission to occur the treatment needs to last 4 days. Anybody on this forum receive this treatment?
  7. I'm getting O2 on a federal program. They are charging the government $36 per M tank. I use a M tank every 10-14 days as I am chronic. I usually hyperventilate O2 for 15 minutes per cluster.
  8. 81007

    No medication

    I cut my 100 milligram sumatriptan pills in half. I don't have rebound headaches, but I wait until it is a full blown attack before I take the pill. I don't think I could take not having any meds. I'm chronic with 3 attacks a day. Oxygen helps a lot.
  9. 81007

    Ear Infections and Cluster Headaches

    I had a terrible ear pain during Halloween night of 1963. I remember crying and hanging on to my bag of candy. I think it was sinus related and we moved to England 6 months later. I never had any kind of problem over there.
  10. 81007

    Quick update

    Well that is good news. I was hoping somebody was going to post a positive result from ketamine. I'm guessing you are using a nasal spray on only the side affected? I am considering get the intravenous infusion. Supposedly they don't want you to drive until the next day after the IV treatment. The theory is that the ketamine causes a "neuroplastic repair" to the brain. Seems there a few ketamine clinics opening up in Colorado with so many many veterans with PTSD being treated with ketamine.
  11. 81007

    Do Cluster cause Physical Damage?

    I'm sure some damage occurs to the body during a cluster headache. I have had the jaw popping and neck/shoulder pain too. The worse part is the fatigue after the headache. I feel tired all the time. Article below states all the physical changes when the body experiences pain. https://www.nursingtimes.net/clinical-archive/pain-management/understanding-the-effect-of-pain-and-how-the-human-body-responds-26-02-2018/
  12. 81007

    Energy drinks

    Last year I sliced my hand open. Got six stitches. A couple times I almost burnt the house down, left food in the oven. With the CH's I tend to want to stay still as possible. I just got over of a CH the other day and was doing the laundry. When I opened the clothes dryer door, the heat made my head hurt again. I closed the door and went to lie down. I sometimes get a headache from going outside in the heat, I quickly rush back in the house. Southern Colorado is having a heatwave and is a desert , so it is very dry. So basically I find that being still keeps the pain to a minimum, while raging, shouting and moving about is counter productive. I fear collateral damage from the CH. I keep trying to explain to the local VA clinic that driving 300 miles round trip to get Sumatriptan from Denver is dangerous, but they really don't care. Military facilities in Colorado Springs refused me more Sumtriptan last week too. All my concerns seem to fall on deaf ears. And they all wonder why veterans commit suicide...
  13. 81007

    Energy drinks

    I have an attack, I take 100mg sumatriptan. Pain goes away for 6-12 hours. I wash the pill down with can of redbull and hyperventilate O2@15 lpm for 15 minutes. Usually stops the attack. 95% of the time... Verapamil had my blood pressure so low, I could not get out of a chair. No indomethacin yet. D3 does nothing. Got the mask. My guess is I have a case of acute chronic cluster headache that is extremely refractory. Usually 3 attacks a day. I seem to have lots of triggers. Smells, foods, weather, you name it, I probably have it. Processed foods seem the worst. I don't pace or fidget when I have CH. I lay down in the bed and try to stay calm. Moving about makes it worse. I asked for Emgality and got Ajovy. Doctor did not listen. I am getting a new neurologist this month. Seen about 6 doctors over the last 3 years. Finally got a diagnosis April 2018.
  14. 81007

    Energy drinks

    Hi DD, Yeah they are rationing 9 pills a month. I managed to get another doctor to give me Ajovy and sumatriptan injectors. I called TEVA pharmaceutical and they admitted Ajovy does not work for CH. Getting a new civilian doctor soon, if he can't get me the ketamine. I will go to a ketamine clinic.I have had three sinus surgeries and they did not help with the headaches. I was exposed to radioactive beryllium oxide in military service and it has been nothing but a big coverup since then. I have been considering treatment in Mexico as a very last resort. I saw a doctor in Mexico a few months ago and his fee was $8.
  15. 81007

    Energy drinks

    As soon as I get a regular attack schedule, it seems to change. I use Red Bull to speed up the medication absorption rate. Usual protocol is 100mg sumatriptan succinate pill, 1 can of Red Bull chugged and hyperventilate oxygen for 15 minutes. I have tried MM the last few weeks and have managed to reduce the sumatriptan to 50mg. I was military and am now retired. But the VA and the military are being very stingy with the sumatriptan. The verapamil I was prescribed made me so weak I had a hard time getting out of a chair. Last night a CH seemed to go on forever. Finally stopped it with a Q-tip soaked in lidocaine stuffed up the nostril. Stopped it within a minute. Sometimes that doesn't work either. I am going to see if I can get a physician to put me on a treatment of ketamine intravenous to stop my chronic cluster headaches. I am reading good things about ketamine in a sub anesthetic dosage. Hypothesis is that it works by neuroplastic repair.
×