Sign in

Showing all posts by "stevienic"

Home  >  Forums  >  Showing all posts by "stevienic"

Posted in New, help needed on 05 Dec, 2017 - 4:41 pm

Hi Kiwikris I found this on this site
DR DARYL SOSA
08 92451515
Grand Prom Medical Centre Cnr of Scarbough Beach Rd and Grand Prom
Perth, wa

member comment:
This doctor gets cluster headaches himself and totally understands what you go through. He has a good understanding of how they work and what can help.

Hope you have some luck


Posted in Recently diagnosed with CH also suffer from TN on 27 Nov, 2017 - 2:37 pm

Hi prednisone and verapamil can cancel each other out . I know this from experience. Prednisone by itself works well on a high dose starting on 75 mg for 3 days then 50 mg 3 days 25mg 3 days lowering by halving to wean off. You cannot be on it for long term as it causes cushings disease ,
Verapamil @ 240 mg slow release twice daily. You need to take something (herbal to assist with bowels sometimes .) Verapamil should give you less attacks of clusters. Medical Oxygen at 25 L/M with a non vented breather can get rid of the cluster attack within 2 to 5 minutes . Lyrica is no good .Also lithuim they may try is no good .
Hope this info helps
regards steve
Ps I dont suffer from clusters but my wife does , She uses Verapamil that gives her up to 5 days cluster free then she may get one attack , the oxygen aborts that usually in 2 minutes .
Alcohol can be a trigger for cluster attacks


Posted in Do I have cluster headaches? on 28 Sep, 2017 - 8:09 am

Hi I does sound like cluster type headaches , Your GP should look it up . He can try you on a coarse of Prednisolone. Its is a steroid. It prevents the release of substances in the body that cause inflammation. starting from 75mg then decreasing But you cant stay on that medication for the long term. The next is verapamil , its normally used for high blood pressure and if you get no side effects it can be used long term . The best and not harmful is oxygen therapy . With a non breather mask 15 to 25 litres per minute can take the cluster headache away within 2 to 5 mins . Its sounds you maybe an episodic cluster sufferer. you may get the headaches for up to 6 weeks , then they go then return in 1 or 2 years for that time again . Chronic cluster headache sufferers never have a break. The knowledge with GP,s are often poor with cluster headaches . You may need a referral to a neurologist . there are many medications they will trial and as your episodic it may be enough to get you through . Also alcohol can trigger an attack . Googling about cluster headaches you will find a lot of information . There is no cure but hopefully you will find some luck to ease these terrible headaches often known as suicide headaches .
If you need oxygen a letter from your doctor and supagas is the one of the best to get oxygen , You can speak to Kay Tebby on 0404626455. from supaga
Your doctor may be reluctant to give you a letter but Kay can advise you


Posted in Why does Oxygen work for CH ? Possibly not why you think. on 15 May, 2017 - 3:43 pm

Hi the cluster headache is caused when the blood vessels dilate .Scientists think a malfunction or abnormality of the hypothalamus causes the carotid arteries that feed the brain to enlarge and press on the trigeminal nerves, causing incredible pain. The trigeminal is a bundle of nerves, one bundle on each side of the head, that split into three to serve the upper jaw, face, forehead and temple. This idea got complicated, though, when researchers found that the pain of cluster headache seems to start before the artery expands and touches the trigeminal but
Oxygen at 15 to 25 litres a minute will 1st dilate the blood vessels also then as they are getting a lot of oxygen , the brain then relaxes the blood vessels and the cluster goes away . This is the way it seems to work .
Long term oxygen will not make your lungs lazy as its only short term on each cluster.


Posted in Specialists on 11 Apr, 2017 - 10:05 pm

Hi the neuros are much the same you could try JACQUES JOUBERT
03 9428 6000
Epworth Hospital (Cliveden)
East Melbourne, vic
The best treatment is oxygen 15 to 25 ltrs a min . all you need is a letter from your doctor and supagas is the one of the best to get oxygen , You can speak to Kay Tebby on 0404626455. from supagas she will give you some advise .
Good luck


Posted in Medicinal maruana on 12 Dec, 2016 - 7:39 pm

My Partner had tried it in medical liquid form as a trial and it did not help , she is a chronic cluster.. It did not make them worse. though but made no remission of the clusters iconicon


Posted in Recent thoughts Cluster due to a virus?? on 30 Oct, 2016 - 4:14 pm

Yes Fraser Coast Neurology please keep in touch , hope your trials are going well
cheers steve


Posted in Thank you to all of you who recommended a Neurologist on 15 Aug, 2016 - 7:58 pm

Dr Joubert is a neurologist contact 03 9428 6000
Epworth Hospital (Cliveden)
East Melbourne, vic
good luck
regards Steve


Posted in The old girl returns! on 15 Jun, 2016 - 3:28 pm

Hi ,
I thought I would add this
my partner was getting 8 attacks a day during the day and night after giving up prednisolone as that was the only thing that worked ( because the side affects, )She tried many things that all clusters sufferers have tried including the dalt and vit D but all did nothing , Oxygen works well . Strange she went on lyrica for back pain , then the clusters reduced to 1 to 3 attacks and rare to get them now during the day , manly when she goes to sleep , but after one or 2 attacks then she sleeps well . She is on 300mg BD no side effects , but when she went up to 600mg BD the attacks increased so back to 300mg , That is helping along with the oxygen . If she lets a cluster go on the lyrica does not dampen the pain. It looks like lyrica has done a chemical change thats reduced the number of attack she gets . Maybe its because it can reduce glutamate ,. re :neurotransmitters
lyrica is based on gamma-aminobutyric acid .
Alcohol can still trigger a cluster though


Posted in Methysergide availability on 07 Aug, 2015 - 1:29 pm

Hi Im wondering if Methysergide is available anywhere in Australia as my partners GP wants to trial her on that but not for ever ,only to see if its works , I did go to the chemist and they cannot get it.
can anyone help ?


Posted in VERAPAMIL on 20 Jun, 2015 - 1:58 pm

just a note to say Verapamil did not work from my wife who is a chronic sufferer icon


Posted in 87% effective in treating Cluster headaches- 5 Meo DALT on 20 Jun, 2015 - 1:56 pm

How how many mg of the 5 meo dalt are you taking each day or what is recomended as i can see it can be bought in 250mg 500mg or 1000mg ,and is Biochem ok to purchase from.
Also have you had no problems with customs
cheers steve


Posted in Hydration spray which increase the oxygen on a cellular level on 10 May, 2015 - 12:40 am

Hi ive just bought 2 bottles , that should give us an idea if the spray works ,. so we will give it a try as anything is worthwhile in hope to manage the clusters ,
will keep you updated on if it works or not
cheers steveinic


Posted in Hydration spray which increase the oxygen on a cellular level on 09 May, 2015 - 11:08 am

Hi just wondering were either you a chronic or episodic sufferer. And how long did you have to use the spray before you noticed a change ., Also how long does 1 bottle last for as it not cheap to buy, Im just wondering if I can trail my partner on 1 bottle and if it works will buy it in bulk.
Hope to hear from you soon
cheers steve


Posted in TMD/TMJ?? on 08 May, 2015 - 8:52 am

Hi my partner is a chronic clusters sufferer, she hs had them for about 5 years and we have tried many different ways. She does have a clicky / popping jaw like you describe. Last year we went to an top oral surgeon in melbourne and he said it was tmd as the jaw was out and neeeded to come forward . At 1st we would have to correct her jaw and if the pain was still there he may neeed to operate, we thought we were on to a cure . She spent around $4000 on special dentures and appointments , we got her jaw back into the postion but the attacks were still happening. The surgeon said her jaw was good and he could do no more as he changed his mind and said it was not tmd tmj and he would not do any sugery, we were very dissapointed
the attacks still keep on happening and predisolone is the only thing that helps, we are currently up to our 3rd nuro who it trying a couple of different things but we are not holding our breath
hope you have some luck


Posted in Workplaces, employers and CH on 19 Mar, 2015 - 7:05 pm

Hi thats good things have settled, what medications is he on that has hepled it ?


Posted in Workplaces, employers and CH on 05 Mar, 2015 - 1:29 pm

HI YOUR HUSBAND SHOULD GET A LETTER FROM HIS DOCTOR TO EXPLAIN TO HIS EMPLOYER ABOUT THE PAIN OF THESE , ALSO GET HIS BOSS TO GOOGLE CLUSTER HEADACHES AND HE WILL GET HIS ANSWER.
HOPE YOU HAVE LUCK AS MANY DO NOT KNOW THIS CAN BE THE WORST PAIN SOMEONE CAN EXPERIENCE AND IT IS OFTEN CALLED SUICIDE HEADACHES. SUICIDE EXPLAING THE ONLY POSSIBLE ESCAPE
REGARDS STEVE


Posted in Becareful when using Prednisone. on 27 Feb, 2015 - 7:12 pm

Hi I notice you live in sth Afica , have you ever gone to see Dr Shevel as he says he can cure closter Headaches ,????


Posted in Sunct headaches on 22 Feb, 2015 - 9:35 pm

Hi Hannah, the Lamicital did not work, and did not make any change to it. We are still on the hunt and seeing a headache specialist nuro in march., prendisolone is the only thing that works but any lower than 25mg the headaches are bad..Following that the last nuro she was seeing put her in the too hard basket; as her clusters were all over the place...............We do have a good and understanding GP who helps where he can.
We then after that had a bit of runaround with a oral and maxifacial surgeon saying it was TMD and her jaw was out or alignment so after spending around $3800 in getting it sorted out , it made no difference ( it did correct the jaw) The surgeon told us there was nothing else he could do when we were under the believe as he said he would do something if the re alignment did not fix it
it does not look promising but im hoping that one day a cure will be found
Kind regards
Steve


Posted in Would warferine work on 18 Feb, 2015 - 7:37 pm

HI MY PARTNER WHO HAS CHRONIC CLUSTERS ,,,SHE HAD NO LUCK ON BATCH'S ANTI -INFLAMMATORY REGIMEN, SHE TRIED THEM FOR 4 MONTHS AND HER BLOOD CHECKS WERE IN THE HIGH LEVEL WHERE IT SHOULD OF WORKED BUT NO LUCK,
ITS WORTH A TRY BUT MAY ONLY WORK FOR SOME LUCKY ONES OF THESE PAINFULL KILLER CLUSTERS.
REGARDS STEVE


Posted in I am hopefully cured on 12 Feb, 2015 - 7:01 am

Hi my partner has had no luck with the feverfew she tried it for 3 weeks and it made no difference so back to the drawing board and hope for a positive cure to come up. she is a chronic sufferer.. icon
Seeing a maxifacial oral surgeon next week as he thinks its tmd and that can replicate cluster suicide headaches. She has seen 2 top nuros but no luck with them , so i have stepped out of the square with hope the oral surgeon can do something. Her jaw is out of alignment according to xrays , she has had jaw physio and a plate made up ,under the instuctions of the surgeon and then to see him in 8 weeks which is up next monday to see if he has to do some surgey / exploration via othroscope
Fingers crossed .


Posted in I am hopefully cured on 20 Jan, 2015 - 6:10 pm

Hi just bought some up the street so my partner can give them a try , here we go at another idea but i wont hold my breath , thanks for sharing the info.. Will keep youn posted on how feverfew goes
Info is 2 tabs 2 times a day . how many do you take???? And how long did they seem to take to work ???


Posted in External beam radiotherapy on 31 Aug, 2014 - 9:00 am

My Partner (Helma) can get stressed when the pain is ruling her life . She is a shift worker and can get attacks when she is a awake and when within about 1/2 hour of sleeping . When she is on no mediation . she struggles and can be worried about going to sleep . the longest she has been off medication has been about 5 days and as you would understand she does not want to live with such pain. I have her back on a high does of Vit D regime and that is helping as she winds down her Prednisolone , but its not a complete preventive. She is willing to try anything to try to get of the . Prednisolone .
Also if she was with out the Prednisolone she would not be able to work.
Her Daughter is getting married in October and my son is getting married in December , so at these time she will go onto a high dose,
We are going to try to access her superannuation next year to go to south Africa.
At the moment im waiting for the ebola disease to slow down , i know its in the top part of Africa but there has been some reports it spreading down to the south .
It will be great if you can advise me how Nicholas goes on the 5HT as we have never tried that .


Posted in External beam radiotherapy on 28 Aug, 2014 - 7:32 pm

Hi seven , it was a device called gamma core that was a trail she had , it shoots high electric charge to the neck that was meant to stop the cluster attack but it did nothing. Often the body can get used to prednisolone therefore a higher dose is needed. 40mg keeps my partner pain free but when she gets to about 25mg she can get 3 short attacks every 2nd day often can be only 5 mins and sometime 1/2 hour. The pain level varys and can spike up to a 7 then drop back to a 5 pain level. Originally she was pain free with 15mg prednisolone but that is no longer. The only side main side affect she has is fluid. Her face is a little puffy and stomach . She is a small size 8 but know finds she may need size 10 with her pants as they are getting tight. icon
Also some people in the USA uses magic Mushrooms that reduces the attacks a lot . This is something the pharmaceutical should look into.


Posted in External beam radiotherapy on 21 Aug, 2014 - 8:12 pm

Hi Seven
Ive heard of the ACETIUM but never had luck getting it here in Aust , and never had a reply from the manufacture overseas but will be interested if your partner has luck . Dr Shevels cost can be around $16000 to $20000 us plus flights and accommodation. . And treatment can take between 2 weeks upto 57 days pending on what he has to do. He seems helpful and genuine . Unfortunately we cannot claim for medical costs as its out of Australia, and not all have had success.
He is a very experienced Dr as has been trying to educate neurologists on pain , but not many will listen and dont agree with his procedure.
We are still keeping it in mind to go to Sth Africa as this would be the last resort,
We have seen Jacques Joubert and then richard starks . The have tried everthing like botox, ,gamma core , injections, Etc and all the common medsthat never worked (lithium , Varapimal etc) always comiing back to Prednisolone. She starts with a high dose of about 60mg then winds down slowly , when she gets on 25mg the clusters start coming back , usually 1 a day and pain around 4 to spikes to about 7 lasting anything from 5mins to 1 hour. once she gets down to 10mg the attacks a lot worst and can last anything uptp 3 hours and 2 to 4 attacks a day.. Without Prednisolone she gets pain around 9 to 10 on the scale and finds it hard to manage life, therefore she goes back on the higher dose of Prednisolone..
Its very hard for me to see her in pain , and nothing i can do except support.


Posted in External beam radiotherapy on 21 Aug, 2014 - 11:19 am

Hi sorry to hear that your partner is have no luck, how much Prednisolone is he on ? My partner is a chronic sufferer too and she has TRIED EVERYTHING possible even herbal and the only med that works is Prednisolone that gives her a break until the dose winds down. As her attacks are very bad this is the only thing keeping her going in life . We also have thought of going to see Dr Shevel in Africa as we a desperate to get her off Prednisolone . I did contact Laurie and his partner replied that he had been having no attacks , that was about 6 weeks after he had the procedure done . Ive since tried to contacting him again to see if he is still pain free, but ive never got back a reply, so im not sure.
I wish there was a positive cure and are hoping a break through comes through soon as this is one of the worst condition one can have, it can rule your life.


Posted in Sunct headaches on 27 Mar, 2014 - 9:55 pm

Hi Everyone , my partner was diagnosed originally with chronic clusters. The nuro has now said he thinks she has sunct Headaches which are short headaches like the clusters.
But it looks she may have both as she can have a severe attack lasting 2 to 5 mins a few times a day but also she has can have an attack that can go for 1 1/2 hrs .All typical cluster pain . The only meds that work is a high dose of predndislone . she has tried lithium which does nothing , varapamal nothing and many other cluster type meds mentioned on this site that do nothing . The nuro is going to try her on lamictal starting from a low dose to a higher dose ,that will take 6 weeks.
I have started her on the vitamin D anti-inflammatory regimen to see if that works and have been told it may take 6 to 8 weeks before if we know if that works .
Does anyone have a similar condition to this.
Also her headaches can be all over the place sometimes like clock work but other times not. . Sometimes within a hour of sleep but other times any part of the day when she is awake .
Also usually when she has a long attack she can get a break for a day or 2 but not from the short ones . Also on the odd times when she feels an attack coming on , when she puts her neck down the pain can go away .
Can anyone relate to this
regards steve


Posted in Glad I found you on 30 Jan, 2014 - 9:08 am

Hi how long have you been having these headaches for , do you get many attacks eg, How many a day and also a week .Do you get long breaks between attacks. Is this what your GP diagnosed that you have cluster headaches. If you look on the left of this site you will find a lot of information and also look at the Practitioners and get your GP to give you a referral to one of them . Then when you make an appointment tell them you have cluster headaches as often they try to see you quicker as they know how bad the condition is ,
good luck
regards
steve


Posted in chronic clusters on 10 Jan, 2014 - 9:17 am

Hi Peter yes my partner has been diagnosed as chronic clusters . Her current neurologist is Richard Starks. ( her 1st was .Jacques Joubert ) We have tried nearly everything along with herbal , bowen ,acupuncture,chiropractic, All the usually meds they use ,with the only one being prendislone working to give her relief but unfortunately its no good long term .
She has been on it off and off the last couple of years just to get a break . She even tried the gamma core Only one she has not tried is lithium .( she has concerns in using it) We saw the nuro yesterday and we decided to try botox ,if it does anything we will know in a week. I have found by searching for info that often what works for one does not work for others . She has had her clusters for a bit over 3 years . it seem to have started after some rough dental work on removal of an upper tooth with them being rough with her neck to the point she had to tell them to stop as they hurt her neck. It seems when the muscle tightens on the right side of the neck she can feel the cluster coming on , sometimes when she puts her head down it can go away , but when it doesn't it hits bad . her cluster can last 5 mins or 15 mins or 1 hour or a whole afternoon with maybe a break for half an hour , After that she may be cluster free for 24 hours then it comes back , Sometimes within a hour of going to sleep or just for no reason during the day . it seems if the muscle tenses and hits the trigeminal nerve, Thats why we have tried botox to see if it works on the muscle , As you know you get desperate to try anything
regards steve


Posted in chronic clusters on 02 Jan, 2014 - 8:28 am

Im wondering how many on this site suffers from chronic clusters.
1. How they manage Chronic. eg. type of meds or natural remedies
2, if Chronic have changed to Acute
3. or has gone into remission
4. What age did the chronic clusters start eg Females @ around 50 (change of life)
5. If anyone thinks their clusters have started from something such as
Dental work .
Accidents eg head or neck trauma
Employment type eg Work hazards ie cleaner, Mechanic etc
Or any relation to neck problems .
As we all know Chronic is the worst case of clusters and i feel for them as my partner suffers from the dreaded Chronic cluster


Posted in New member on 25 Dec, 2013 - 9:19 am

Hi i have just joined this site as i feel the pain my partner goes through. She was diagnosed chronic clusters around 3 years ago. ( current age 53 )We have tried many things such as acupuncture, chiropractor, deep tissue and the gamma core also various meds that are used for clusters. , The only one that works for her is prednisolone. She has just come off Prednislone and this is the 4th day in which the pain has increased to 8 to 9 on the scale.She is currently seeing nuro Richard Starks. I have looked at this site many times , and have just decided to join up as she had a very bad attack today 25/12.
Hope we can get help on this forum as im desperate icon