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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 

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It's great that you are getting relief. 

Carbolitium = lithium; Deltacortene = prednisone.  Lithium is a good preventive used for some people with chronic CH.  Hopefully you will find the side effects manageable and your doctor will help you find the right long-term dosage. 

It is generally considered a very bad idea to take prednisone regularly because of its effects on bones and joints, among other things. 50mg/day seems to me like a pretty strong dose.

When you say you "tried everything," does that include the preventive vitamin D3 regimen?  Does it include high doses of verapamil?  I assume it includes properly-used oxygen and an injectable triptan.  If you did in fact try everything that is typically prescribed for CH and none of it worked, then you might think about whether you have a condition that looks like CH but isn't, such as a hemicrania.  The prescriptions you are taking now would probably work against hemicrania, too.  Lithium might turn out to be okay as a long-term strategy, but I think you really have to think twice about taking prednisone for an extended time.

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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 

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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 

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8 hours ago, Eli.G. said:

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 ,

If you need or want sumatriptan injections in the future, you can split them so you are using less each time. https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Some doctors will prescribe it in vials with syringes so you can measure your own doses.  Most people need less than the full 6mg that is in the standard injector.

 

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11 hours ago, Eli.G. said:

 .... I even when to Amsterdam and tried alternative , but that only postpone couple of  months next attack period so even that didn't helped. 

hi Eli,

...i assume this is referring to mushrooms or some other busting substance?

....postponing a cycle would have had me doing the happy dance every day til the next cycle...and i used to have one every 6-8 weeks...even avoiding ONE hit was cause for celebration...

...busting is not a one off deal....folks who bust determine dosage and frequency based on personal experience. if you get 2 months "free" for each bust then your periodicity of busting is evident...

...sorry if i'm missing something...just really puzzled why you would not pursue this further....you are on the right site for insight...

best

jonathan

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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 

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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 

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.....ummm....welll.....if you bust every 2 months you might just get that year....and more....

.....i used the triptan zomig nasal spray (5mg) as abort of last resort (carried on person at all times).....no fumbling with needles or injectors....a simple press and inhale. worked better for me than imitrex.....

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If you are having cluster exacerbations that are affected by hormone changes you could try "turning off the ovaries" with something like Lupron or continuous oral contraception.  There is no contraindication to hormone therapy (birth control, hormone replacement or cycle suppression) as directly regards cluster headaches. Some women have headache intensity changes depending on cyclic changes.

It would be a rare neurologist who has a clue about cycle control, you would likely need a thoughtful gynecologist to help.  Someone who specialized in reproductive endocrinology (infertility) would have the best knowledge base to help.

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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  

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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 !!!!! 

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Hi Eli. Unfortunately most doctors don't understand Clusters, including many Neurologists! 

Many years ago I was told NOT to take Birth Control because of migraines. And i was also told that women did not get Clusters as well. Well, how wrong that was!!! Many doctors need educating on Clusters.

I did HRT with no issue regarding my Clusters. Perhaps let your Gyno know that Clusters are NOT migraines, but are often treated the same because they don't have 'meds' for Clusters, just hand-me-downs from migraine patients.

He should let you do a trial run at least. You might get more hits and likely you won't see any change in your head, but the 'other' will be helped immensely! 

Best of luck! And have you tried O2 using the proper flow rate and mask so that it actually does something? Or were you handed a script and sent on your way with no instructions? It makes a huge difference!!

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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. 

 

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4 hours ago, Eli.G. said:

I just wish we have something that attacks don't come

The Vitamin D3 regimen accomplishes this for many people.  

So do many pharmaceuticals, including verapamil.  But these have side effects, while the D3 regimen, if taken properly, has practically none.

I have to say that your CH seems very extreme in the way it comes on, overwhelming you so very quickly with so much pain.  I'm sorry -- that must be particularly terrible, even for CH.  

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The 1 in 10 has changed to 3 in 10 and is now at 4 in 10 I believe. I find it unfortunate and infuriating that doctors don't keep up with their own field!!!  But, CH patients are few, so I sort of understand it. 

There are at least two studies in the US currently that are testing Magic Mushrooms for CH, so that is a huge plus! 

As a woman, you will find that you almost certainly have to advocate for yourself. And almost all CHer's must advocate for themselves too. 

Have you tried an ice cold energy drink at the first sign of a hit? It can really help. I can't tolerate them, but use iced coffee for the same purpose. I grab it before I hit the O2. In addition, as soon as you wake with a hit, begin deep breathing and forceful exhale on your way to the caffeine and O2. 

I think it pays to have a plan of action for your hits as that can help occupy your brain with meaningful stuff to help as opposed to quickly falling into hell and thinking there is no way out. As in the more control you have or you take, the better the outcome. I have found that anger with the situation causes my hits to be worse. When I 'take control' by doing X in an orderly fashion, it keeps the pain level lower. My anger jacks it up even worse than it would have been. 

Have you tried the D3 Regimen? It can be a big hammer in your arsenal! Many have gone completely pain free just taking the vitamins. Others experience a reduction in pain level and a slower ramp-up of pain. Both of those things would be a huge help for you. I am not sure what country you are in, but some require a script for D3. Others do not. 

In addition, we love naps when we are in cycle, right? Try to make up some lost sleep. Well, in short order those naps become a trigger in themselves. You fall asleep and wake with a bruiser of a hit. Naps become a no-no and a strict sleep schedule often must be implemented. :( If you sleep in a recliner with your head kept higher than your heart, you can get some decent sleep and will wake sooner in the attack if/when it comes.   

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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 

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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 

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Sorry you are having such a rough go with the CH Eli, but glad that some of the best, most qualified advisors possible have been weighing in here so far.

From this it sounds like if you were to keep up with the alternative therapy (busting?) every couple months, you could go into some genuinely long term remission, as many before you have?

On 5/19/2021 at 2:58 AM, Eli.G. said:

... I even when to Amsterdam and tried alternative , but that only postpone couple of  months next attack period so even that didn't help

Although personally of the male gender, I have long suspected that the refusal of so many doctors to diagnose females with CH has been based on a self perpetuating medical myth that it is so much more prevalent in males.

If you are continuing to use imitrex, one strategy you could consider would be to have a lower dose syringe pre-loaded and ready to go so there wouldn't be any real thinking or calculating required when you need it to administer it. This would probably require being well rehearsed with exactly what you would do when the time came, and this rehearsal could be done at a time when you are not actually having an attack. I have been there and done that. Markings of (2mg) doses on the syringes, and a plan for super easy, painless subcutaneous injection in the abdomen were part of the preparation process.

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