I’m a Norwegian male 40 years old , struggling with worsening stomach illness. situation is desperate.
I write and post this here 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 this anxoiusness 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 buprenorphine for nerve pain 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 reflux oesophagitis ultrasound s showed an abundancy of gas in tranverse colon
11-12 Hypersensitive esophagus , roemheld syndrome?
Since 2009 I have had ca 20 '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 it 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 brethless 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 tihnk I can ever be used to it and handle the really bad ones camly, 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, 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 do something about it.
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 centra of the raditaing pain I get with stmiulation or activity and it is also cloe to the colon hepatic flectura the hernia and oesophagus. Then this 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 . 5 years 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. I tried fasting limited diets , digestive enzymes but im only getting worse. Nothing seems to help :( Afraid of taking probiotics as a doctor siad it might worsen symptomes in the beginning. I tried activia yogurt and gave allergy like itcing dizzy spacey feeling most of the day.
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 noraspan 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?
Any chance betal blockers could work , of some other substance or treatment? All advice is very welcome !
With regards , Artur
ps: I paste some links with desciptions here