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OUCH(UK) Organisation for the Understanding of Cluster Headache

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#1 Mon, 25/09/2017 - 12:21
wayne-leonnes
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Hello

hello my name is wayne, im 29yo and i have had cluster headaces most of my life  but only dignosed 2 yrs ago. I have other health conditions (mental illness) i have a pathner who care for me and looks after me on day to day basics i dont leave home unless very extrame circumstances, im house bound due to the attacks i have and they are very unpredictable and very sudden. I wake up every day fine but within a few mins of being awake i can feel my head starting to flare up and thats how i plan my day. I havent had any remission periods of such a time period its constant and get progressivley worse as the day goes on then may dissaper mid morning to return on the night or eveing the ones that wake me are the nasty ones or the odd other i had this weekend gone after taking my children to see day out with thomas, my medication i recive for my cluster headaces are varapmil 240mg morning 120mg eveing also i have sumatriptan injections and oxygen cylinder x4 and x2oxygen machines i am under a nuroligist and have been for 2 years and now just recived an appointment to see a nurologist in stoke royal infermey 60 miles away from me as they cannot get me to have a remission period they went to up my dose of varapmil but one day i recived a phone call personally from my nuroaligist telling me that the does cannot be increased due to my heart not coping and could lead to caraid arresst or stroke 

at this point im now very very scared i have 3 children and a wonderful loving caring partner who is by my side to help me during attacks, my children are scared as they see the full exxtent of the attackts day in day out and the full blunt of me smashing my head on walls punching my self or me crying and screaming in my bedroom i have all the usual symtoms of cluster headaces, runny nose, pain behind the eye, pain either side of my head, droopy face. once  i have a seriose attack slured speech sweating photophobic both to light and sound red eyes. i take my medication as follows 240mg varapmil on a morning and a 300mg asprin under my tounge if headace progressivley worse if tablets dont work if im out this is when i will use my sumatriptan injection but the rebound headace is 100000000 times worse aftwards till i get home for oxygen this usually take an hour to send the pain off again for around 2 hrs where the pain will come back and sit there again ready to give me that massive bout again:(

it usually take around an hour for oxyen to take affect but only offers me reliff  do have the odd few day of when it settles but no more then 3 days excitment gets the worse of me and makes them worse or even doing phyisical things even to get out the chair and to stand after standing a few seconds it seems the blood rushes to my head and makes  my headace much much worse it seems like ive had to slow my self down massively to stop myself getting the pains but does not work the pain still get best of me over the past 9 months my health has detirated massivley and attacks more frequently my parthner is worried about my health and well being as she has seen the change get worse i could continue to carry on putting my story but its endless but i want to explain my story to help others or for us to seek help from others 

as stated i am awaing an appointment to see a very high nuroligist in 2 weeks in stoke and from what i was being told from my previouse nurologist that they were going to attemtpt to give me lithuim or a steriod injecton in my head or even brain surgury brain stimulatinn??? (im scared to have my head cracked open and have this majour surgery)

i am typing this with a headace and my photophobia is starting to kick in and may not be on for a while so if you could please contact my parthner on fb as leonne boswell and please give her adviceect would be appriceated as i dont use pc much due to heath 

i recive pip also for other health conditions and have been for a while now and my pathner was going to call them to change the circamstances based on my heath at this current moment in times i dont know exactley what i recive in my claim without looking at paperwork but only get £333 a month nothing on mobilty but as me and my pathner have suggested this may now be wrong as i dont seem fit enought to leave the house 9/10 im unsteady after attacks i cannot cook for myself now due to attacks i cannot be away from my medication for such a lengh of time ect would also like some infomation to how i would change these circamstance based on my health and if i would be be worth calling them to see if i was intitiled to more then what i get to help my parthner manage and cope as she says she feels like she has raise our 3 children due to my health i vaule this massivle any help would be greatfull

would like to mention i have tried strict diets to stop intake of coffee choclatte ect i dont not drink alchol at all i do smoke but not a lot i have tried other remidies like eating almonds ect still nothing was looking into the shrooms idea but i have 3 children and wouldnt put my children in danger at all so that a big no no!!!

i did stop smoking for over 12months to see if it would help to no result i havent found my triggers just seems if i do to much or get excited or go over the top sex is the worse and could have massive bouts after this but not always the cause 

i have tried my best to type this out and will get my other half to fix my errors before adding the post 

wayne & leonne

 

wayne & leonne

Tue, 26/09/2017 - 10:39
Val
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Joined: 21/03/2012 - 15:16

Hello Wayne and Leonne

So sorry to read what a tough time Wayne is having with his CH,  But if you are going to see a neuro at Stoke hospital, it is most likely  Dr Brendan Davies who is a really good headache neuro, and he as spoken at our meetings and attended some of our events too. 

Dr Davies will review your treatment and may suggest another preventive for you.  Aspirin isn't usually  used in CH, but it may have been prescribed for you because of the heart problem that has come up as a result of taking the verapamil.    With the sumatriptan injection don't delay taking the injection, if you wait too long after the start of a headache it will get too much of a hold and you won't be able to shift it, or if you do it will cause rebound.  You say the oxygen is taking over an hour work - with respect, that may not be the oxygen working, it may be the natural end of the attack.  You need to go on the oxygen as soon as you know the attack is starting, at 15 litres per minute for the first few minutes.  You can then turn it down to say 8 to 10 litres a minute, so long as the little b ag on the oxygen mask reflates between breaths.  Stay on the oxygen for at least five to ten minutes after the attack has gone.  If you come off the oxygen too soon you may get a rebound attack.  If the attack has not gone after half an hour or so, then switch off the oxygen, but try it again for the next attack.   

Dr Davies will take a very detailed case history and work out a treatment plan from that.  Lithium is one of the preventives used in CH, and you will be told how best to take it.  The steroid injection is given into the occipital nerves which are at the back of the head just under the skin, take just a few seconds to do and are only mildly uncomfortable.  There are two operations that can be done for CH, one is called an occipital nerve stimulator implant where a small battery  pack is implanted in the shoulder area and wires go under the skin to the occipital nerves at the back of the head just under the skin.  They place contacts on the nerves and the battery pack gives out a pulse that helps to block the pain and to cut down the number of attacks and the severity of them.  The other stimulation procedure is deep brain stimulation, which is a fairly major procedure involving putting a stimulation device in an area of the brain called the hypothalamus and does involve going into the brain itself.  There is now another procedure where a tiny device is implanted in the cheek, a very minor procedure, but I am not sure if they offer that procedure at Stoke.  Dr Davies will answer all your questions.

with regard to PIP,  As you are members of OUCH, I can put you in touch with an organisation called the Brain Charity who assist sufferers of neurological diseases throughout the UK, we have strong links with them and they can assist with applying to the DWP to re-assess your mobility needs and also look at what other benefits you might be entitled to.  If you would like us to do that, please let me know on here and I will forward your details to them. 

The only known food or drink triggers for CH are alcohol.  Smoking doesn't make m uch difference, but if you end up with narrowed arteries from smoking you can't have the sumatriptan injections.  There is no proven research that shrooms are safe to use in CH, or that they are a cure and as they are at present illegal drugs, we don't advocate their use.    Extreme exercise can trigger attacks, and anything that makes the body temperature go up.

You or your partner are welcome to call the helpline any time on 01646 651979 10.00 am to 2.00 pm.  messages received after 2.00 pm will be returned the following day.

Hope this information is of some help to you.

Best wishes

Val.

 

 

Tue, 26/09/2017 - 12:53
wayne-leonnes
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hi val i value you respone massivley it is dr davis he has got to go and see on the 25th october and he cannot wait 

the only reason we have got this far is because wayne was in the doctors having a full on attack and they helped him from there apart from waiting 1 whole year for an appoinment for a nuroligist to see him to begin with and the day we came to go to see nuro for the 1st time we recived a letter via post telling us our appointmet was canceled and had to wait a full year for another appointment at this point wayne broke his heart over the phone and started crying which didnt help his head at the time as that night he had a huge attack so its not been so straight forward and just to get his meds he had to wait 48hrs for docs to prescribe them now they do it the very same day for him lucky enough

wayne doesnt have a bag mask its an open mask with two hole in as his said and seen my self this doent help so the little adaptor that on the end of the pipe he puts this right by his mouth and goes and puts his head under the sheets or head under the pillow if he has a bout at time wayne puts his head in spot that you would think of. we have also had the chance to buy a cool pack for cold compress to his head and from what his told me it does see to dim the pain slightly but not ovall 

he is taking the asprin off his own back as wayne thinks this helps dim the pain in the morning only for and hour or two but it doesnt last long and some times its got rid of the pain his also notice that if his been on oxygen one week it doesnt help on the following so his swapping and compasating to find the reliff 

after an attack he isnt the same it takes several days even upto a week to fully recover from an attack wayne doent go out due to helth issues he hasnt been to town for neally 10 years as the pain sometimes can become so sever he cannot walk back to the car and as his the main driver in the house i can see shortly due to decressed health i dont think they will let him drive and suspend his licence but wayne knows when an attack is coming and there has been times wayne has pulled over and just tried to go to sleep in the car even less then a mile away from home wayne cannot get about like he use to he was sooooooo eneagetic as he had adha he was always bouncing the wallls but now its scars me when a fully grown man is crying and screming because the amouts of pain that he is in and that its uncureable 

i would love him to have a break from them but its every single day he has a headace but not all are sever bouts but spends most of his days buried into the corner of the sofa with a pillow over his head. he finds he can bare the pain to a certian point and then knows when to use the oxygen there has been times where wayne had tryed to cook food and his half way throw cooking and left it and ending up in bed left food burning on the side his sleeping is not normal either his awake every 3 hours on a night he goes to bed around 10.30pm and awake again at 12.30 then again at 3.30 and again at 6am but his also started to tell me his having dreams every night always diffrent but nothing that woud cause halm in the dreams but this is only something we have noticed past 2 months 

wayne recives pip or the following adhd,autysm, dilexia, mild mood depression (split personality thinking due to headaces) 2 years ago we did put down on his claim form that he had cluster headaces but not sure if they over sighted it due to him not having treatment at the time due to ball started rolling

pip award was for enchanced for daily component of weekley amount £82.30 nothing on mobility untill 2019

i claim carrers allowence for him and he gets a foughtly payment for income support but as wayne has no concept of money as he doesnt go out ect i pay all the bills and give him what ever he wants within reason 

wayne was looking at the shrooms idea and told him it was a bad idea!! (and a no stuck) but all he thought about was the reliff so such a time he undersatnds why its called the susacide headace and his said he would think about ending it due to the pain and that he wouldnt think twice and this scares me as wayne had a history in mental health and had tryed a few times self harming and at one point and the headaces was so aggressive it took a toll on his mental condition and the doctors were going to section him there and then and wouldnt let him leave the sugery and police were involded due to waynes state of mind 

your help would be more then appriceated its hard to try and look after wayne during a servar attack when i have 3 children to look after and his upstaires is amounts of pain but i always go and check ever few mins to comfort him as much as i can he doent like me talking to him due to the sound he thinks im shouting this must be past of the headace ive been with wayne 13 years and know wayne like the back of my hand but over the past 2 years i hardley know him i see a change massivley and i am worried about him even to the point ive asked his to take out life insurence just incase anything happens 

 

kind reguards Wayne & Leonne 

wayne & leonne

Wed, 27/09/2017 - 10:14
Val
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Joined: 21/03/2012 - 15:16

May I say first of all how glad I am that Wayne has you as his supporter and what a fantastic job you are doing.  I gathered from Wayne's post that he has had a horrendous time and how brave he has been to actually post all that on this forum. 

Glad that it is Dr Davies he is seeing, because of other conditions and medications, Wayne's treatment plan will need to be finely tuned. 

With regard to the oxygen mask this is the type that Wayne needs, called a non-rebreather mask [see below:      Image result for image non-rebreather oxygen mask

 

It is dangereous to use the o xygen in the way that Wayne is doing, ask your oxygen supplier for a non-rebreather mask and they should provide that FOC.   Please be aware that when you are using oxygen it is absorbed into the skin and clothing and bedclothes of the user and you need to avoid any naked flame or open fire, or lighted cigarettes as the oxygen absorbed can be ignited.   

We do have a supporter's section on the forum so that our family and friends can vent and ask about how to best help their family member who has CH.  

Good luck to Wayne with Dr Davies and let us know how he gets on.

Best wishes

Val.

Tue, 03/10/2017 - 21:58
Chloesdad
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Joined: 03/10/2017 - 11:24

Hi my name is Neil I am the father of a recently ch diagnosed 15 year old girl named Chloe. It has been a very frightening and stressful few weeks especially for Chloe but we have the all important diagnosis and we are in the process of having oxygen delivered tomorrow after what I can only describe as a challenging time trying to convince several doctors of it's value and neccessaty in giving Chloe relief. We are just over three weeks into Chloe's first episode of attacks and we are desperately hoping they are episodic and not chronic. We have relied on the OUCH helpline for advice several times during some dark days where we felt we were at loggerheads with health professionals, speaking to Val she gave us the advise and the strength along with the knowhow that we needed to continually argue our case againgst what I describe as a professional arrogance until we finally got a peadiatric doctor that listened and was willing to read the files on oxygen tharapy kindly Emailed to us to help persuade by OUCH. We know we cannot hold the medical profession responsible for Chloe's condition I do however feel certain individuals could have ended her suffering sooner if they had only been prepared to listen and willing to look into what we was telling them a bit more. We hope with Chloe being so young that a viable cure will exist eventually in the not too distant future, we are a strong family and it is what it is, we can only accept it and look to the future.. After all Chloe has so many important years in front of her.

Tue, 10/10/2017 - 15:01
wayne-leonnes
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Joined: 25/09/2017 - 09:38

im so very sorry to hear about your daughter i know exaclty what your girls is going throw i am cronic and had them most my life with little remission periods only thing i could say is just be there with her upon attacks and dont talk to her from what i experience is daunting light and sound become a big problem when my otherhalf talks to me dueing attacks i think she is shouting at me  just a rub on the back or a cold compress could help but adapt to her attacks i do find the oxygen helps but not a cure as i could have another after a few hours coming off the oxygen i usuall bury my self into the bed upon an attack but the night attacks are far much the worst ive experiecnced there the ones i worry the most of all and at times i fear for my life as the  pain is so bad its been a struggle to get the ball rolling with the medical proffesnasls 2-3 year battle but now have oxygen at home and injections any yet theses may be a relief its not a cure and there are days where i just want out (end it all) i fear to leave the house now as ive noticed that i have attacks more frequent when im out and the shoting pains that lead up to an attack feels like i have a bleed on the brain or fireworks set off in my head it can be hard i have 3 young children and then also know when i have attacks my 5 year old goes to the freezer for my ice pack and askes me if i need to go to be for oxygen but she never stops screaming at her brother and sister when i have an attack but my other half is very reasuring and there for me and i than her massivley 

wayne & leonne

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