Eli.G.

CHfather , true verapamil I was never supposed to try because I have low pressure and this medicine did max to my memory and concentration and made feel bad while taking it , definitely no good for me . Will order again all things for D3 just this time will do O2 and iced Red Bull all together . I didn’t have last nights , just kind of shadows in the evening , I did by myself injections on head of solu metilprednizonol with lidocain, maybe that helped even that I put less dose then doctor , just he put only in one place behind and I did all over right side of the head and I put less then him because was my first time I do it alone and was afraid to don’t exaggerate or do something wrong . This is the first time since I have CH that my attacks are more then a month , I am so afraid that I don’t become cronical

Thank you , I will do as you advice me , yes anger is bad just in that moment in pain I don’t think clear , can’t control nothing , I am really angry that I have to live with this , I even have suicidal thinking or to take knife and take out my eye , I know it is not normal just when pain is so big I don’t care about anything except to stop that devil. I live in Italy here they do do D3 prescriptions but on this forum I heard about it and I buy all things and I did that regime but unfortunately didn’t help . I think triger is allsow stress and I do have lot’s of stress . CH changed my life and people don’t understand and they stress me , like “ why you didn’t tell me day before me that you can’t work ?” Well , CH don’t tell me that will come day before .... then I have teenager kids and all big stress , I think that is my triger . I will try with Red Bull in frige and will take again O2 will try that , thank u

hi Spiny, you are right they don't know much about cluster. I heard that in 10 cluster people only one is woman , even on internet is written this in all wiki s, but in ambulance day for cluster I see the same number women as men with cluster. the most sad think is that how they don't know much how they will find a cure ....... if we look alzaimer or Parkinson , neurology in 30 years didn't do any progress, it is not optimistic that they will make progress for us too and that is horrible O2 I did try, but only if I put on myself in first 2 sec did work. but how often I am or out of the house or night pain wake me up when is already painful and it is not first 2 second when you fell tik behind an eye, after that O2 didn't work. so I didn't use it .but you are right maybe I ask doctor again and use it if I am next to it in first 2 see. sumatriptan works in 7 min when I inject myself . I just wish we have something that attacks don't come and not to think how to stop it when is already breaking head . I even don't know when it will come and how long it will be. first 2 years came only in February for 1 month and only 1 attack a day and now even 3 times a day, then 5 days nothing and then 1 or 2, then again 2,3 everyday and it is even more then a month. I have no clues , can't even plan things in my life because of cluster. but no need to tell you about it, you people here are the only one to understand how cluster make bad quality of life anyway, thank you, I will take again o2 and will go to Amsterdam again as Jon019 said better even few months postpone then nothing postpone.

Ginecologist told me this , have to trust him . And for post I wrote that filtration helped me , unfortunately not true , 1p.m woke me up attack did supatriptan injection and then at 7 p.m another one and did hit again that is max for 24 Hours for supatriptan so pray a god that 3 rd don’t come today because can’t use 3 rd supatriptan for heart risk . Was sure that this period is finished and then 2 come , this is the worst illness that exist !!!!!

no, it is not connected with hormones ,I got cluster many many years before I needed help with hormones. , I was just saying for contradiction of therapy , that now when I need hormone help cluster is blocking me of taking that help that I need. migrane is connected with periods and hormones, when women get in that period and as you said switch of her ovaie her migraine is gone forever, unfortunately cluster has nothing to do with it

Jon019, every 6-8 weeks ? So sorry , must be horrible, I have 2 or 3 times a year for a month . It did post pone for 2,3 months but was delusional because I was thinking at least 1year of pease will get . I know it sound strange but I prefer to know when my next cluster will come if will come soon , because I can organize with my work , when it come in month that never come before it make me problems with my work plans. First years was allways same months and now it is changed and it is more probleme with that

My attacks are so strong , I am on the floor in my trowing out thing and have problem to find even preparared sumatriptan, I can’t imagine that in that moment I can prepare vials and dosage and doing on my self..... I am sure you are right about dosage just I live alone and I am not capable to do that in moment of attack

hemicranial it is not, unfortunately I have cluster , when I was diagnosed and when I find out what it is , didn't want to accept it and I was to so many neurologist , even in 3 diffrent countries, but unfortunately all of then said the same . cluster . I think that for females is even more bad because we have period when we need hormonal help therapy and dr. can't give you nothing bakes with cluster it is contradictional and males don't have period of that need , so cluster females are in double trouble in my opinion . let's just hope they find a cure, but for good, for forever

yes, I did D3 and didn't helped, verapamil just made more problems ( I have low pressure and he did bad to my concentration and memory and didn't helped with clusters attacks. oxygen didn't worked too. injectable triptan works in 6 min but when I already get attack , problem is when I had more then 2 attacks a day and I can't inject myself with 3. rd triptan because of heart risk , so I was looking for therapy that I don't have a attacks or to have less number of attacks, to inject sumatriptan ok , works , but when attack is already there .... I even when to Amsterdam and tried alternative , but that only postpone couple of months next attack period so even that didn't helped. when I was in ambulance for cluster there was 2 people who did molecular therapy , and they said that for first time helped them just they felt very sick couple of days , second time molecular didn't worked for them. dr. said I can.t do molecular because I am not right candidate for it. but this infiltration did worked . I even did buy this medicine and will do it to myself if ambulance will be closed for next attacks. last year because of covid they were closed and it was nightmare for me. now I have what I need and will inject by myself if they close for covid. about therapy that I took, deltacortene 50 mg in the morning only for a week, second week you start with 25 for 3 days and then 3 days you finish with 5 mg. carbolitium when you are sure that period is finished , every 5 days you take out one pill. carbolitium didn't made me problems, but deltacortene made me panic attacks and problem to feel a sleep, so you have to drink something extra to calm down that shaking inside and insomnia

hello, I have cluster 8 years, tried everything , nothing didn't work for me, just got more times a year and more times a day sometimes.... my doctor said that I am not candidate for moleculars and he wanted to try this: 1. filtration, injection behinde head bone with Metilprednisolone nikma 40 mg with lidocaine 20 mg 2. 4 pils of carbolitium of 150 mg , 2 in morning 2 in afternoon 3. 2 morning 25 mg deltacortene 4. something for protection for stomach in the morning I had only 2 attacks for whole month. means finally something worked wanted to share this with you, maybe this help someone too

very interesting, I agree that utill someone from medicine field that realy understand , can do good reseach. I think that no one belives how hard attacks are, i think that everyone think i exagerate when i say " i want to take my eye out of head when paint is so big" , anyway, you are right, "headaches" in not good word for cluster, it gives it less because headaches are like relax massage in comparation with cluster. they should give it another name.

Using imigran , after C.H. period everything is ok

Hi Spiny, thank you for replay. I tried all medicines that are usualy used for CH , in 2 different countries I sow the best neurologist and I tried : cortisone medicines,immigrant and other nose spreys, all kind of pain killer for head..... nothing helped , i just had bad side effects (zombi feeling and heart beating ). Magnezium I took a lot in june last year and didn't help. I noticed that melatonine is not working since I have CH. Before CH when I traveled and changed zone time, melatonin made me sleep nice and since I have CH , melatonin doesn't make me sleep at all and when I finally fell a sleep, I woke up after max 5 hours and that is strange because I sleep a lot usualy (when there is not period of CH.) I haven't try Kudzu extract and I will try it. thank you for advice of D3 regiment, I read it and everything exept that I have tried. I don't agree that triger is alcohol or cigarets, ( only summer few drinks and my attacks are allways in february and some year in june too ) , I allsow do sports allmost everyday (exept when attacks starts) . Psilocybin is so hard to find,only ones I find and that stoped attacks for 2 years, but as I said i have problems finding it and to don't mention how doctors or people look on that. they don't understand what CH people are going trought and they judge badly . oxigen bottle with mask- nothing, ( 3 times i did, only once after 15 min stoped , I didn't nothice any improvment ) and country where I live they don't give oxigent bottle for free for CH people and if you buy private is arround 2000 dollars ,so I had to go to other country where is chepear (250 dollars ) and big bottle was enought only for 3 attacks ( 3 days) and as I said only once I notice that attack was shorter then usualy.

Hello , I am female 37 years old that suffer from Cluster Headich since 5 years ago. I learned a lot and tried everything but never heard that someone stoped attacks forever , please if you know for that case , write how you did that or how that person succseded and how it is possible. My last pain attack started 24 th of February and last one was 3 days ago and maybe this cicle is finished and next come in June just like last year. knowing that it’s coming and how it will be , that is really so bad for quality of life. Everything stops , I can’t do nothing and just pray to God to give me strength to wait until 100 mg of imigran starts working and unfortunately make me like zombi all day . Sometimes , I wait even 40 minutes, and with all pain it’s like forever . I really want to find tretmant that will cure my C.H. forever , I can’t belive that all people who got this have it for all life , maybe someone break a circle forever , please write