This post is wery long so if you cant read it all just read the bold sections
I’m a Norwegian male 40 years old , struggling with worsening stomach illness situation is desperate.
I write and post this here on bluelight to get suggestions on what drugs and treatments might help alleviate my stomach pain and spasms and resulting heart palpitations. As my situation is complicated I will write a short chronological list and some links to give a overview. This post will be long but please bear with me, as I have a need to explain a very complicated situation.
I am a worrier and axoius person been like that since early childhood and it is probably a contributing factor, but regardless of the cause, the physical suffering is still very real.
1999 I got shingles and the nerve pain never went away , the docs didn’t really listen to me so after one year I caved in and started self medicating on buprenorphine 1-2 mg a day.
99 hepex zoster , with post herpetic neuralgia up to present day
00-02 self medicated with bupe 1-2mg a day.
02 got a panic attack stopped bupe and started diazepam 15 mg a day
02-07 worse anxiety , diazepam 15 mg a day
07 tapered off diazepam , digestive problems and worsening of heart palpitations
07 got dx Apergers syndrome
07 – 09 protracted withdrawal symptoms , started developing GERD and ibs
09 got spasm diaphragm hard able to breath and strong tachycardia.
10 gastroscopy showed GERD, hiatal hernia and ultrsound s showed an abundancy of gas in tranverse colon
11-12 hypersensitive esophagus , romemheld syndrome ?
Since 2009 I have had ca 25 'attacks' where my diapragm spasms. Its like a punch in the stomach and the diapragm / bowels / epsophagus or all starts to quiver, I then loose control of my diaphragm and the air is knocked of my chest. It gets really heard to breath, my heart flutters for some time and then goes up to 150-200 bpm tachycardia. These attacks last from 5 to 30 minutes , that worst tachycardia and breathless feeling usually some minutes. They come on times where there is a lot tension and soreness in my stomach and can be triggered by just standing up or getting exited. In the attacks there is always a tingling vacuum feeling under my right rib near to the hepatic flexure, close to where I have the nerve pain from the shingles. When wave of this tingling hits in an attck it is triggers more of rapid heart beat or missed beats. I think it must be the nerves or hepatoc felcture or possible duodenum in the area being very irritated and spasming, misfiring and affecting the vagus nerve , witch in turn affects the heartbeat.
In any case this 'attacks' are extremely uncomfortable and scary it feels life theratening. And I dont think I can ever be used to it and handle the really bad ones, but I have found that lying on the right side will calm it down a little faster.
I had my heart checked by a good cardiologist and holter monitor and he said its fine no dangerous rhythm disturbances or structural abnormalities, although they haven caught one of the severe attacks the holter monitor.
But these worst attacks are only the tip of the iceberg , my stomach is bothering me 24/7 Daily activities such as drinking , eating walking , showering is a major challenge and brings worsening of the pain,and soreness. The last 2 years I have had increasing pain after orgasm, and the last 3 months I have been unable to have orgasm , as the stimulation severely worsens the pain under right rib and feels like the bowels have some spasm with moving of gas immediately after the orgasm, its similar to the pain I get after taking a shower or walking, only worse. Due to this the last 3 months I have to wash myself mostly with a cloth and avoid walking as much as possible. My diet is more and more restricted and eating soup and sometimes even drinking water worsens discomfort. Needless to say my life quality is severy diminished by all this and its to much to try to describe it all. I hardly have a social life and cannot work. I fortunate that my wife is understanding and patient with this and stand by me , I don’t know if I would have been able to bear it alone.
I have used acid blocker pantoprazole 40mg daily and it helps on the acid but seems to make the gas an motility problems worse. I would like to try a period without it but when I try to quit the acid gets so much worse and I feel it can trigger more sensitivity problems in the oesophagus , so as of now im stuck with it for better or worse.
Been to 2 gastro docs and got gastroscopy they dont seem to have a clue , only said to keep taking the pantoprazole and learn to live with it. My GP doc is at a loss he sais that Norway is to small country to have experts on my condition. Altough the the factors likely causing my condtion is decribed no doctor here seems to have enough knowledge to ackovlede it and suggest treatments.
2 weeks ago I suggested to my Gp.Doc to try Norspan patch to lessen the hypersensitivity I have now been on 5 ug/h for one week and went up to 10ug/h 3 days ago. But alas, except for a little opiate fuzziness and warmth the buprenorphine don’t seem to work on the stomach at all, and some of the pain migh even feels worse. And yesterday I had a severe spasm attack come on while i was driving. Had been eating some fried fish pudding the day before and felt more sore than usual from the morning. Had a moderatly stressful phone call call and after it the radiating pain aboun the strenum worsened to the point it got hard concentrating on the driving. Then it got hard to breathe and the all to familiar quivering in the diaprhagm started , like a earthquake it knocks the air out of me and causing my heart to flutter and then to go into very rapid pulse . I pulled over and called 113 was so out of breath i could hardly speak. It subsided over the next 5 minutes and when the the ambulance arrived after 10 minutes the palpitations had settled down to 100 bpm .
They drove me to my GP and the effort of walking in to the docs office triggerd a smaller 'attack' . Some minutes later my GP came to see me and he told he feels very frustrated about not being able to help me more.
To summarize I think my present hypersensitivity is caused be the nerve damage and central sensitization form the post herpetic neuralgia under my right rib , this is the epicentre of the raditaing pain I get with stmiulation or activity and it is also close to the transverse colon - hepatic flexture , the hiatal hernia and oesophagus. I tinhk the valium taper and withdrawal made the sensitivity got worse from the valium taper and gave rise to gerd and worse ibs. Also the intestial flora is out of balance after 3 antibiotic treatments the last 2 years. So 5 years out after the valium taper it seems im in a negative spiral when it takes less and less physical or emotional stress to irritate, up to now where even walking and drinking water gives strong discomfort.
As of now I have no life quality , every activity is involves pain and fear for spasm attacks.
At this point the doc is willing to give me everything, and I asked for a prescription of clonazepam yesterday as its the only thing I could tinhk of. Im not sure I will try it and in any case will wait til i take of the norapsn patch in some days. To go into regular use on a benzodiazepine after 5 years on valium with all the side effects and withdrawal, the clonazepam must be really effective on my stomach to be worth taking for me and I would probable be on it the rest of my life. Anyone experience clonazepam alleviate hypersensitive stomach and ibs symptoms?
I also consider Sativex, the 50/50 thc/cbd spray but after the last attack im doubting it will work and my doc is reluctant to prescribe it. Maybe the buoprenorphine would work better in dosages over 2 mg a day? or maybe there is some other opiate or neuroleptic particulary good on the stomach?.
My question to the bluelight community is of any of you have an idea based on personal experience on drugs that could work on stomach spasm , be it opiate benzo ,neuroleptic or any other substance that could alleviate my suffering. Any other suggestions or advice is also wery welcome
With regards , Artur
ps: I paste some links with desciptions here
hypersensitive esphagus
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/
central sensitisation
http://www.wellcome.ac.uk/en/pain/mi.../science4.html
romeheld syndrome
http://en.wikipedia.org/wiki/Roemheld_syndrome
hiatal henia
http://en.wikipedia.org/wiki/Hiatus_hernia
splenic flexture syndrome
http://www.wisegeek.org/what-is-splenic-flexure-syndrome.htm#lbimages
I’m a Norwegian male 40 years old , struggling with worsening stomach illness situation is desperate.
I write and post this here on bluelight to get suggestions on what drugs and treatments might help alleviate my stomach pain and spasms and resulting heart palpitations. As my situation is complicated I will write a short chronological list and some links to give a overview. This post will be long but please bear with me, as I have a need to explain a very complicated situation.
I am a worrier and axoius person been like that since early childhood and it is probably a contributing factor, but regardless of the cause, the physical suffering is still very real.
1999 I got shingles and the nerve pain never went away , the docs didn’t really listen to me so after one year I caved in and started self medicating on buprenorphine 1-2 mg a day.
99 hepex zoster , with post herpetic neuralgia up to present day
00-02 self medicated with bupe 1-2mg a day.
02 got a panic attack stopped bupe and started diazepam 15 mg a day
02-07 worse anxiety , diazepam 15 mg a day
07 tapered off diazepam , digestive problems and worsening of heart palpitations
07 got dx Apergers syndrome
07 – 09 protracted withdrawal symptoms , started developing GERD and ibs
09 got spasm diaphragm hard able to breath and strong tachycardia.
10 gastroscopy showed GERD, hiatal hernia and ultrsound s showed an abundancy of gas in tranverse colon
11-12 hypersensitive esophagus , romemheld syndrome ?
Since 2009 I have had ca 25 'attacks' where my diapragm spasms. Its like a punch in the stomach and the diapragm / bowels / epsophagus or all starts to quiver, I then loose control of my diaphragm and the air is knocked of my chest. It gets really heard to breath, my heart flutters for some time and then goes up to 150-200 bpm tachycardia. These attacks last from 5 to 30 minutes , that worst tachycardia and breathless feeling usually some minutes. They come on times where there is a lot tension and soreness in my stomach and can be triggered by just standing up or getting exited. In the attacks there is always a tingling vacuum feeling under my right rib near to the hepatic flexure, close to where I have the nerve pain from the shingles. When wave of this tingling hits in an attck it is triggers more of rapid heart beat or missed beats. I think it must be the nerves or hepatoc felcture or possible duodenum in the area being very irritated and spasming, misfiring and affecting the vagus nerve , witch in turn affects the heartbeat.
In any case this 'attacks' are extremely uncomfortable and scary it feels life theratening. And I dont think I can ever be used to it and handle the really bad ones, but I have found that lying on the right side will calm it down a little faster.
I had my heart checked by a good cardiologist and holter monitor and he said its fine no dangerous rhythm disturbances or structural abnormalities, although they haven caught one of the severe attacks the holter monitor.
But these worst attacks are only the tip of the iceberg , my stomach is bothering me 24/7 Daily activities such as drinking , eating walking , showering is a major challenge and brings worsening of the pain,and soreness. The last 2 years I have had increasing pain after orgasm, and the last 3 months I have been unable to have orgasm , as the stimulation severely worsens the pain under right rib and feels like the bowels have some spasm with moving of gas immediately after the orgasm, its similar to the pain I get after taking a shower or walking, only worse. Due to this the last 3 months I have to wash myself mostly with a cloth and avoid walking as much as possible. My diet is more and more restricted and eating soup and sometimes even drinking water worsens discomfort. Needless to say my life quality is severy diminished by all this and its to much to try to describe it all. I hardly have a social life and cannot work. I fortunate that my wife is understanding and patient with this and stand by me , I don’t know if I would have been able to bear it alone.
I have used acid blocker pantoprazole 40mg daily and it helps on the acid but seems to make the gas an motility problems worse. I would like to try a period without it but when I try to quit the acid gets so much worse and I feel it can trigger more sensitivity problems in the oesophagus , so as of now im stuck with it for better or worse.
Been to 2 gastro docs and got gastroscopy they dont seem to have a clue , only said to keep taking the pantoprazole and learn to live with it. My GP doc is at a loss he sais that Norway is to small country to have experts on my condition. Altough the the factors likely causing my condtion is decribed no doctor here seems to have enough knowledge to ackovlede it and suggest treatments.
2 weeks ago I suggested to my Gp.Doc to try Norspan patch to lessen the hypersensitivity I have now been on 5 ug/h for one week and went up to 10ug/h 3 days ago. But alas, except for a little opiate fuzziness and warmth the buprenorphine don’t seem to work on the stomach at all, and some of the pain migh even feels worse. And yesterday I had a severe spasm attack come on while i was driving. Had been eating some fried fish pudding the day before and felt more sore than usual from the morning. Had a moderatly stressful phone call call and after it the radiating pain aboun the strenum worsened to the point it got hard concentrating on the driving. Then it got hard to breathe and the all to familiar quivering in the diaprhagm started , like a earthquake it knocks the air out of me and causing my heart to flutter and then to go into very rapid pulse . I pulled over and called 113 was so out of breath i could hardly speak. It subsided over the next 5 minutes and when the the ambulance arrived after 10 minutes the palpitations had settled down to 100 bpm .
They drove me to my GP and the effort of walking in to the docs office triggerd a smaller 'attack' . Some minutes later my GP came to see me and he told he feels very frustrated about not being able to help me more.
To summarize I think my present hypersensitivity is caused be the nerve damage and central sensitization form the post herpetic neuralgia under my right rib , this is the epicentre of the raditaing pain I get with stmiulation or activity and it is also close to the transverse colon - hepatic flexture , the hiatal hernia and oesophagus. I tinhk the valium taper and withdrawal made the sensitivity got worse from the valium taper and gave rise to gerd and worse ibs. Also the intestial flora is out of balance after 3 antibiotic treatments the last 2 years. So 5 years out after the valium taper it seems im in a negative spiral when it takes less and less physical or emotional stress to irritate, up to now where even walking and drinking water gives strong discomfort.
As of now I have no life quality , every activity is involves pain and fear for spasm attacks.
At this point the doc is willing to give me everything, and I asked for a prescription of clonazepam yesterday as its the only thing I could tinhk of. Im not sure I will try it and in any case will wait til i take of the norapsn patch in some days. To go into regular use on a benzodiazepine after 5 years on valium with all the side effects and withdrawal, the clonazepam must be really effective on my stomach to be worth taking for me and I would probable be on it the rest of my life. Anyone experience clonazepam alleviate hypersensitive stomach and ibs symptoms?
I also consider Sativex, the 50/50 thc/cbd spray but after the last attack im doubting it will work and my doc is reluctant to prescribe it. Maybe the buoprenorphine would work better in dosages over 2 mg a day? or maybe there is some other opiate or neuroleptic particulary good on the stomach?.
My question to the bluelight community is of any of you have an idea based on personal experience on drugs that could work on stomach spasm , be it opiate benzo ,neuroleptic or any other substance that could alleviate my suffering. Any other suggestions or advice is also wery welcome
With regards , Artur
ps: I paste some links with desciptions here
hypersensitive esphagus
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950665/
central sensitisation
http://www.wellcome.ac.uk/en/pain/mi.../science4.html
romeheld syndrome
http://en.wikipedia.org/wiki/Roemheld_syndrome
hiatal henia
http://en.wikipedia.org/wiki/Hiatus_hernia
splenic flexture syndrome
http://www.wisegeek.org/what-is-splenic-flexure-syndrome.htm#lbimages
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