My super rare condition

Hiccough

Welcome to my world. I'm now hitting 14 months of non stop cronic hiccuping every 5 seconds or so . Yes 14 months . Two cameras down one in Galway and one in Dublin numerous drugs. . For the first 3 months I just lived with it hoping or would stop. Only after research did I realize more than 48 hours is serious but I'm not the type of person to go running to the doctors. My first camera down I was told I had the helibactor bacteria and I taught great something to point my finger at . I had a good few weeks of relief on antibiotics and pump inhibitors but then they started again . Second camera down they found nothing all clears on X-rays , bloods and no helibactor . Some days I get the odd relieve if I try a new drugs but that seems to stop and then bam back it comes ;(

I'm fit and healthy in my 30s and don't drink much or smoke and try to keep fit

Is there anyone out there in Ireland with this condition right now !. at this stage I'm now considering going to the media for help !

And it's all the side affects too. Constant bloating, cronic belching , indigestion ,sleep, and a wrecked tired diaphragm . There is a lot more to Cronic Hiccups more then people realise . In Fact when I get them bad I stop breathing for 30 seconds or more as if the diagram says f@€k this I'm tired I'm just going to lock up so you can't breath and gasp to get air

My next plan is to see a Chro as there have been some cases of the phrenic nerve irritation being stopped With a correction of c3,4,5 But again it's so rare even the medical profession know little of this condidion and I'm clutching at straws at this stage

After that I have an MRI scan planned . I posted a comment on another forum and funny enough I even had the guy from the BBC documentary "the man who couldn't stop hiccupping" contact me . He said to get MRI as soon as . Turns out he had a tumor on his brain stem hmmm ...

Anyway I will let you know if people are interested In listening to me ramble on and any expertise out there willing to contact me is most appreciated

Thanks for listening
hiccough hiccough .....hiccough

endacl

Feck. You have my sympathy. You must be driven bonkers.

Hiccough

endacl wrote: »

Feck. You have my sympathy. You must be driven bonkers.

Yep and the wife . Tho funny enough I think they stop when I'm asleep as most morning I'm not hiccupping until I get up and have breakfast. So that is one positive that might indicate its not a brain issue ??? I just stated taking chlorpromazine few days ago tho the pill i took 2 hours ago has just dulled the intensity they are still ever 5 seconds tho . This morning I got till 10.30 thanks to the pill not exactly a cure. I don't fancy being on them too long or having to take them during the day in work as they make you drowsy

endacl

Stupid question. Have you tried deep breathing exercises, or anything that focuses on breathing like yoga or vocal coaching? Or, at the extreme end of the scale, some of the deep filling type exercises that competitive free divers work on?

Chareth Cutestory

Hope you can figure out the cause of these hiccups, and soon. I vaguely remember watching that documentary about the lad in England and just thinking how much of a nightmare it seemed; hiccuping constantly and eventually having it take over your life. Wishing you the best of luck in getting a diagnosis, and a cure. If for no other reason than to give your wife a break from the racket

tallaghtmick

Wow ill stop complaining about my stuff....for a few days :pac: really hope you get it sorted

Hiccough

endacl wrote: »

Stupid question. Have you tried deep breathing exercises, or anything that focuses on breathing like yoga or vocal coaching? Or, at the extreme end of the scale, some of the deep filling type exercises that competitive free divers work on?

I've not done any yoga or specialsed breathing yet . It's another thing on my list. Thanks for the advice. I'm in bed here now about to get up. And as usual I'm not hiccupping YET. Tho I am all bloated and my stomach is making noises. My big concern will be ruling out MIR related issues I guess . Tho like I said it must be a positive sign that I'm not hiccuping now .

Hiccough

tallaghtmick wrote: »

Wow ill stop complaining about my stuff....for a few days :pac: really hope you get it sorted

Ha ha . The worse hiccups are when you yawn as you lose control and they become super loud I've become very good at hiding them until they get intense and start shaking my whole body

endacl

How come 'hiccough' as a name, and 'hiccup' as a verb?

Hiccough

Chareth Cutestory wrote: »

Hope you can figure out the cause of these hiccups, and soon. I vaguely remember watching that documentary about the lad in England and just thinking how much of a nightmare it seemed; hiccuping constantly and eventually having it take over your life. Wishing you the best of luck in getting a diagnosis, and a cure. If for no other reason than to give your wife a break from the racket

If they are very bad then the spare bedroom is used . At least now they are less intense . At their worst 6 months ago there were times when they were coming at about 5 a second not 1 every 5 seconds. The whole bed would shake like mad

banquo

There are digital media students around the country who have to do video projects on something who would kill to have you as a subject!

Hiccough

banquo wrote: »

There are digital media students around the country who have to do video projects on something who would kill to have you as a subject!

Yea I bet tho I rather have a bunch of trained medical students poke me in every orifice if it cured me . I would consider my self a reserved person I don't go looking for attention but given the circumstances I'm at the stage of doing anything if it resulted in a cure

endacl

How are you managing with work etc?

Hiccough

endacl wrote: »

How are you managing with work etc?

I work sitting down in front of a PC all day and some days i get to work from home. Guess I'm lucky I don't work in surgery that would be fun . I have learnt to keep them quite . I'm on the bus now into work and yep they have just started tho they are mild for now . It was nice to eat my porridge in peace

akthung

I'd watched a video on TED about orgasm and the speaker, a woman, quoted a medical record that a man (French, if I remember it correctly) had hiccups for two weeks. What "cured" him was...yes, orgasm.

Not much help here, lol, but seriously though, I hope you'll get cured soon whatever that is.

Hiccough

akthung wrote: »

I'd watched a video on TED about orgasm and the speaker, a woman, quoted a medical record that a man (French, if I remember it correctly) had hiccups for two weeks. What "cured" him was...yes, orgasm.

Not much help here, lol, but seriously though, I hope you'll get cured soon whatever that is.

Yea I read that alright . If you type in "cronic hiccups" in YouTube you get a few hits. Funny thing is watching people who have made the American headlines after only 5 weeks and here I am now thinking I'm abit beyond that now .

Hiccough

Hi

After a very bad few days of some serious deep hicccups and terrible indigestion even taking my tranquilizer for the last 3 days I decided to take my chinese herb medicine again last night which i had not taken in at least 5 days. Within a few hours i could feel my stomach calm down. I didn't bother taking any meds last night. Woke up as usual not hiccupping and so far i'm not hiccuping yeaaaa feeling alot better stomach wise too. Tho i've had this happen plenty of times before where i get a few days free before it comes back with a vengenance.

Each time i keep racking my head thinking why why why ! What is it this time that i'm doing differently.
What am i eating differently ???
I even had a spicy dinner last night one of the worse things you can do when your dying with indigestion but yet it's not affected me this time. Best i have felt in 3 or 4 weeks. The only isssue I have now is some buring feeling when I swallow in the back of the throat.

Have a meeting with my Doc later today probably about getting a MRI scan which i'm dying to get done !!! and on Saturday a family member has some contact with a guy who said he can help me .. Some sort of "Tapping" which is a form of "Emotional Freedom Technique " Hay !!!! when you get to my stage you are willing to try anything at this point even if your mind is say hmmmmmm ... i'm a man of science and logic.

Chiropractor booked in for tomorrow too . Yes there had been a few cases where Chiros have cured hiccups tho speaking with him he said he only read cases studies about cronic hiccupping but he's never encountered anyone yet with this condition asking for his help.

Hiccup and out !

GhostInTheRuins

That must be absolutely frustrating.

I get hiccups everyday, when I'm hungry and just as I take my first or second bite of food they come on. They're annoying enough just for three or four minutes but I can't imagine trying to live with that for over a year. Holy moly, you must be driven up the wall at this stage.

You say you don't get them at night and they usually only come on when you get up, so if you stayed in bed the whole day would they stay away? Does lying down stop them?

Hiccough

GhostInTheRuins wrote: »

That must be absolutely frustrating.

I get hiccups everyday, when I'm hungry and just as I take my first or second bite of food they come on. They're annoying enough just for three or four minutes but I can't imagine trying to live with that for over a year. Holy moly, you must be driven up the wall at this stage.

You say you don't get them at night and they usually only come on when you get up, so if you stayed in bed the whole day would they stay away? Does lying down stop them?

They go when I actually get to sleep or half asleep sometimes I wake my self up just before I go off as I loose control and end up letting out some seriously loud hiccups . Staying in bed is not an option with having 2 small kids and work . Today was a great day for me. I got till 9.00 tonight without hiccupping just before I got to the gym. Hiccuping now but they are light and stomach is calm for once.

tim3000

Hiccough wrote: »

I've not done any yoga or specialsed breathing yet . It's another thing on my list. Thanks for the advice. I'm in bed here now about to get up. And as usual I'm not hiccupping YET. Tho I am all bloated and my stomach is making noises. My big concern will be ruling out MIR related issues I guess . Tho like I said it must be a positive sign that I'm not hiccuping now .

Another stupid question but have you tried gargling a glass of water for 50-60 seconds usually works for me when I get them.

Hope you see some improvement soon

Leader of the Furlings

Give this a read when you're at your Desk/laptop and see do you notice an improvement...

endacl

Leader of the Furlings wrote: »

Give this a read when you're at your Desk/laptop and see do you notice an improvement...

Hiccough

Leader of the Furlings wrote: »

Give this a read when you're at your Desk/laptop and see do you notice an improvement...

Worth a try

Leader of the Furlings

Hiccough wrote: »

Worth a try

Had you seen it before? Get a fright?:P

Hiccough

tim3000 wrote: »

Another stupid question but have you tried gargling a glass of water for 50-60 seconds usually works for me when I get them.

Hope you see some improvement soon

I think I'm beyond the step of simple cures which all more or less to the same thing of stimulating the Vagus nerve

Hiccough

Leader of the Furlings wrote: »

Had you seen it before? Get a fright?:P

Yea similar type of ones alright . New something was coming

Hiccough

Had my first chiro treatment yesterday so far no hiccupping today . Very eairly to say anything yet as the last few days have been good. ive been getting till night before it starts. Will post on here in another 2 weeks or so for a more accurate update. I should have had my MRI by then too. I also Have the tapping session tomorrow tho Im not too bothered about that one to be honest . Seems a bit too new age and mostly working on the placebo effect it can have if you believe it will work. All medication stopped apart from taking two chinese tables at night which was the start of my good phase. I will need at least 4 to 6 months clear of hiccups before I will declare my self cured as eairly on I did get 6 to 8 week free when I first went on 3 antibiotics , maxolot thing and some pump inhibitor

Hiccough

Hi

I guess I don't need to give you guys an update . I've been pretty shocked to see my story go so fast around the world . Im not the sort of person to seek attention hence why I didn't even use my real name here but desperate times call for desperate measures and I feel like I'm backed into a corner and have to come out fighting . I've had a few offers of help from the publicity already from doing the radio interviews even from a acupuncturist who said he cured a woman in china who was hiccuping for 2 years.

Strangely enough Today was a great day for me I hardly hiccuped . Not so great for the people interviewing me but there you go such is life I get the odd day free for reasons I cannot work out . My normal personality would be the quite type but the hiccups have caused me change. I need help as I'm afraid I could still be talking about it in another 14 months

Maybe there is a cure in there somewhere to do the adrenaline I had all day from the nerves of having my first batch of radio interviews in my life . Who knows maybe after today I will never hiccuping again hmmm here's hoping

Well brain scan next week and a CT .






Thanks all
Daniel

Chareth Cutestory

I wasn't aware how global news of your condition had gone. One quick google search later and you weren't kidding! America, New Zealand, UK etc. Glad to hear you've had a few hiccup free days lately. Being a generally quiet person myself I imagine it must have been pretty difficult getting out there. If it gets you the awareness or potential help you might need then it's worth it.

Best of luck with the upcoming scan.

Hiccough

Thanks Char

yea it's been abit mad alright all the morning tv shows in the UK and ireland are looking for me but i think i will avoid live TV as there is a chance i won't hiccup for the 20 min i'm on air from nerves and then ill start as soon as i leave the studio . I'll look like a right idiot or someone scamming it then.

I think everyone knows now anyway . I wasn't expecting it to explode around the world like this :eek:

If you interested Ryan Tuberty did a really nice understanding interview with me

http://www.rte.ie/2fm/search/?q=14 months

Typically i was not hiccuping in the morning hence why i recored my self the night before as proof of what it's like.

Anyway Thanks for the comment

Daniel

Seany81

ive a weird condition myself im 32 and since around may last year I have had chronic belching 24 7 thats not the only thing these belches cause severe burning pain on the left side of my throat

AUSTINMARY

Hi There, Have just read your message on 13/8/13 and also a pal told me about your media interview with Ryan Tubridy and I personally read the article from Irish Daily Mail last Thursday!!! We can identify completely with everything you have said etc. My husband has been hiccuping 19 months at this stage and has been down the exact road you are on - we can identify with the way it wrecks your life - and hey presto when it goes quiet for a very short period you think - whey its gone!! But no way, wham bang it comes back with verocity. Did you get any help from anyone who contacted you through media exposure - we would be very interested as we are demented!!!!

Hiccough

AUSTINMARY wrote: »

Hi There, Have just read your message on 13/8/13 and also a pal told me about your media interview with Ryan Tubridy and I personally read the article from Irish Daily Mail last Thursday!!! We can identify completely with everything you have said etc. My husband has been hiccuping 19 months at this stage and has been down the exact road you are on - we can identify with the way it wrecks your life - and hey presto when it goes quiet for a very short period you think - whey its gone!! But no way, wham bang it comes back with verocity. Did you get any help from anyone who contacted you through media exposure - we would be very interested as we are demented!!!!

Just a accuptuctureist and another lady that does posture correction , cupping and life coaching ect. Nothing you probably have not looked at already . My main goal now is getting my MRI and CT scan done tomorrow and hopefully finding them all clear to rule out anything more Nasty. My interview is up on the tubridy podcast website and I have a video on YouTube too tho I am controlling them so I was keeping them quite .

username123

Best of luck with the MRI and CT scan tomorrow.

Hiccough

username123 wrote: »

Best of luck with the MRI and CT scan tomorrow.

Thank you very much. Ill let you all know when I get results back . So far my good period is still going strong cant complain about that. Even tho i did nothing this time to try stop them . They just magically stopped right when I went public ha ha typical eay . If they start back which I'm assuming they will I will Video myself.

Chareth Cutestory

Best of luck with the scans. Fingers crossed for you.

Hiccough

Chareth Cutestory wrote: »

Best of luck with the scans. Fingers crossed for you.

Cheers . Hope so . Conditions like this that go on for this long tend to have an underlining cause of the more Nasty types but I'm hoping all will be clear . It won't tell me why if they are clear but at least I can say what it's not

AUSTINMARY

Hi Daniel.
Hope all ok with your MRI results. Just to let you know that we have now gone to a natural healer/a farmer of 83 years of age - afraid to say in case we scutter - but getting some positive results - as never had free periods except when asleep ( with sedative) - once up and moving all started again - now getting long breaks, though not full day yet - which is hopeful - fingers xx. Amazing that only a handful of us out there with this problem - puzzle for medical world - sometimes science does not heal everything and you have to turn somewhere else.

Chrisita

What misery!! Hiccups are unbearable for any length of time. My suggestion is to have a stool analysis, this could show up any irregularities along your digestive tract. If you find a laboratory that offers this service, they can give you a list of local practitioners in your local area. I had this done for other reasons and was diagnosed with 4 different problems, all resolved now. One was H pylori. I wish you a complete cure SOON.

Hiccough

AUSTINMARY wrote: »

Hi Daniel.
Hope all ok with your MRI results. Just to let you know that we have now gone to a natural healer/a farmer of 83 years of age - afraid to say in case we scutter - but getting some positive results - as never had free periods except when asleep ( with sedative) - once up and moving all started again - now getting long breaks, though not full day yet - which is hopeful - fingers xx. Amazing that only a handful of us out there with this problem - puzzle for medical world - sometimes science does not heal everything and you have to turn somewhere else.

Great to hear that

Hiccough

Chrisita wrote: »

What misery!! Hiccups are unbearable for any length of time. My suggestion is to have a stool analysis, this could show up any irregularities along your digestive tract. If you find a laboratory that offers this service, they can give you a list of local practitioners in your local area. I had this done for other reasons and was diagnosed with 4 different problems, all resolved now. One was H pylori. I wish you a complete cure SOON.

My first camera down they found the helibactor alright and I got a at least 3 to 4 weeks free of them only for them to return

Chrisita

My analysis showed up three other issues that needed correction, many people who have it are found to have several problems, not just one.

Hiccough

hmmm yes my scan . Not the sort of news i wanted to hear back but it looks like I have MS tho i'm not displaying any of the typical MS symptons "YET". Only time will tell what sort of hand i've been dealt. As for the hiccups i'm still hiccupping away tho for some bizzare reason last week i got 7 days free of them "yeaaaaa" so i'm hoping to get a few more breaks like that . As for MS and hiccups well i guess it might be possible as anything is possible if your CNS is being attacked but the MS foundation of Ireland have no one on their records that have had cronic hiccups and MS. Having these dam hiccups is rare anyway so there might be no connection what so ever between the two. Who knows perhaps having the hiccups has been a blessing giving me a head start on starting treatment for MS before any symptons start tho as you might not know MS is a cronic condition so there is no cure YET same as these F(*king hiccups. I have changed my diet (no red meat lots of extra veg and fruit and low saturated fats) not that it was that bad before and i'm taking aload of supplements. A Low fat diet have been proven to really help with MS. As they say the best of presents can come in the uglyest of packages so who knows I may have to thank my hiccups yet tho right now they are diving up the bloody wall.

Hiccough

One thing i do know is . I don't have a brain tumor and i don't have motor neuron . The few cases of this condition that goes on this long tumors seem to be the outcome of my research ive done heace why i pushed for an MRI even tho the medical community never once suggested it to me !

For anyone here suffering from hiccups for more then 1 month reading this i would strongly advise you to get an MRI.

Hiccough

i've been taking a few daily videos of myself over the last few weeks just general rants . The hiccups have totally changed me that way. Before i would have run a mile away from a camera. Now i'm prepared to go on TV in front of millions if it means getting the specialist help i need.

Yes i'm even considering things like going on "embarrassing bodies" . When you have them this long you will do anything and i mean anything !!

Speaking of TV. I turned down all live TV offers I got due the fact that my hiccups can stop for 20 mins during the day. It might be in a weeks time it stops for abit or it might be tomorrow but i felt that if i did go on live TV and I wasn't hiccupping i would look like a complete Idiot . The adrenaline from going on live TV could stop them which i think is what happened after i went puplic with my story they stopped for a few days when all the media was interested in me.

I not saying i won't be on TV as there is a big german TV station still wanting to interview me but not live. We shall see they may have lost interest in me .....

wandatowell

akthung wrote: »

What "cured" him was...yes, orgasm.

As in....in his mouth?


I'd stick with the hicups

Hiccough

Quick update for thoese interested. Finally got my hospital appointment booked in about 8 days. Will be staying in for about 3 days for more MRI scans and a lumbar puncture but I guess these are all just for my suspected MS. My hiccups have been ok I guess been getting more periods of "free time" from them. Yesteday from example I only had them for about a few hours all day and today so far so good. I also haven't had a " I can't breath for 30 seconds" episode for about a month which is great. Im pretty sure the lifestyle changes I have made are helping me get more periods of "free time"


Yes it's quite possible my hiccups are related to my MS (once confirmed my the lumbar) it's also possible they are not but if I was a betting man the odds would be in favour of it being related. No one will ever be able to tell me if they are. It's also possible they may never go away or that they could get worse like there were before or may be they will stop for a long period and then return ??? I still can't manage to go more then 6 or 7 days that's the longest free period I can manage. Still it's great as I never got free periods before.

In the mean time I have made a few life style changes

I have changed my diet to "SWANK" so no more red meat or ice cream for me and lots more extra fruits and vegs
I'm also starting to do "juicing" tho not too happy about the waste these machines leave and the expense of it !
I'm also taking supplements like Vitamine D and B complex , omega 3, primrose oil and my hiccups medication which is just stemetil and zotrole.

I actually have about 30 small 1 to 2 min vids recording of myself hiccupping over the last few months doing different things as i was meant to use them with my interview with that german tv station. Not sure weather to release them on youtube or not ???.

Hiccough

18 months now and counting . Tho they have improved in that they now generally go into an on /off cycle. Example 10 days hiccups then 6/7/8 free then Back to hiccups again . Tho they have improved I had my worst period all year was at Christmas. For 11 days and nights they made me sick nearly every night and were every 3/4 seconds non stop. Least they back to normal again less intense so I can get to sleep once they are not every 2 seconds.


I might be on Tubridy again this week as a follow up but will I be hiccuping is anyone's guess they are milder this week on and off during they day hour free here and there. Morning is usually my best times hence why I typing here at 3 am at night hiccuping every 4/5 seconds.

As for the German tv I sent in my videos and seems they like them god knows why I think they are terrible . If they come over and I'm not hiccuping so be it not much I can do about that they have a life of their own.

Cheers
Daniel

livemusic4life

I'm on neurontin and it says on the leaflet that its used for, among other things, hiccups.
I have scoliosis and i get occasional bad bouts of hiccups which last for a few days. Not had any since i started those meds. Not that I'm giving you medical advice. The mri does sound like a good idea and you have my utmost sympathy. A few hours is long enough without months and months

Hiccough

livemusic4life wrote: »

I'm on neurontin and it says on the leaflet that its used for, among other things, hiccups.
I have scoliosis and i get occasional bad bouts of hiccups which last for a few days. Not had any since i started those meds. Not that I'm giving you medical advice. The mri does sound like a good idea and you have my utmost sympathy. A few hours is long enough without months and months

Thanks music4life. That drug sounds pretty similar to lyrica which I have prescription for tho I have yet to try that one. My only concern is I don't think these drugs are meant to be taken long term as their main focus is for something different it's just that they may help . I probably will get around to trying it at some point I'll mention it to my neurologist . Yea I had the mri done and the results are extensive legions on my brain tho lucky enough finger crossed I just have this one symptom so far. I guess the area in my brain that controls hiccups is damaged and unfortunately no drug can fix that yet ! . I did get some good news on my MRI at least my spine seems to be clear of legions at the moment . I have another MRI next week that will be the big one for me as it's been 6 months since the last so hopefully i don't have any new legions since at that would indicate a more aggressive ms. This week I have an ECG and more blood tests to determine which ms medication to start. I want to go as aggressive as possible. At least I have that option with the new drugs out in the last few years .

Cheers
Daniel

livemusic4life

Hiccough wrote: »

Thanks music4life. That drug sounds pretty similar to lyrica which I have prescription for tho I have yet to try that one. My only concern is I don't think these drugs are meant to be taken long term as their main focus is for something different it's just that they may help . I probably will get around to trying it at some point I'll mention it to my neurologist . Yea I had the mri done and the results are extensive legions on my brain tho lucky enough finger crossed I just have this one symptom so far. I guess the area in my brain that controls hiccups is damaged and unfortunately no drug can fix that yet ! . I did get some good news on my MRI at least my spine seems to be clear of legions at the moment . I have another MRI next week that will be the big one for me as it's been 6 months since the last so hopefully i don't have any new legions since at that would indicate a more aggressive ms. This week I have an ECG and more blood tests to determine which ms medication to start. I want to go as aggressive as possible. At least I have that option with the new drugs out in the last few years .

Cheers
Daniel

well lyrica as far as i know are for seizures and nerve pain. Neurontin is an antispasmodic used for conditions like ms and ibs. I take it for muscle spasms between my ribs from curves in my spine. So far so good for me