Running out of options, just looking for a bit of advice on next steps.

Jaykay00

Hi all 😀 I'm just looking for a bit of advice from anyone with similar symptoms or in a similar situation on what to do next, I have added some personal things like medical history and meds incase anyone experienced similar symptoms on the same meds or with the same medical conditions. Any advice is greatly appreciated, ♥ 

36M ex Smoker, dont drink & Drugs...w/COPD overlap asthma, CPTSD, GAD, herniated disc in neck and lower back without compression, ex opoid addict, I was also born with a genetic face deformity which I had corrected at 18, family history of heart issues which I have been checked and cleared for but unfortunately my son has a enlarged aortic root which I believe is genetic.

Meds pregablin 525mg for GAD been on for about a year and a half, fostair & blue inhaler for lung issues, mirtazapine 45mg for depression been on both for about 3 years, Buprenorphine 4mg for painkiller addiction been on since january, lansoprazole 1 a day for 3 months, buscopan 20mg 3x a day for 3 days.

This is gonna be a long one but I really need some advice as I honestly feel lost and now quite worried.

About 1 year ago I started injecting testosterone 400 pw and was also taking dianabol tablets 20mg twice daily for bodybuilding. I stopped taking it the end of January this year as I was comming off a painkiller addiction and wanted to come off everything bad and start looking after my body more, this is when the buprenorphine started for pain killer addiction.

About 4 months ago I was asleep on my left side when all of a sudden it felt like my left side of body went into cramp, this happened as I was on the brink of deep sleep... This happened every night but was OK when sleeping on my back or right side. About 1 week later this started happening when sleeping on my right, but this time I had chest pains as well, sometimes right side but most often it would start right side of my chest and shoot into my left and into shoulder, this always happened as i was on the brink of deep sleep as my body relaxes. Then it started when sleeping on my back but was mainly chest pains with some abdominal cramps, also a shooting pain into my front of head above eyes, i also get weird smells at the same times as the cramps and a sensation of being punched in the solar plexus area... I decided to go to the doctors to get this checked out.

When I saw the doctor and told her my symptoms she said she could only deal with one thing at a time but done full bloods and also checked prolactin levels due to steroid use. when the results came back it showed my CRP level was raised and the same with my prolactin levels. When the doctor called to tell me the results she said these can be raised because it could be just a virus and stress so its nothing to worry about even though i wasnt ill or stressed... later on that night as I started to drift off to sleep I got bad chest pain, and a sharp pain in the head above eyes and I noticed my heartbeat change to pounding thumping so I decided to go to the hospital.

At the hospital, I told the doctor what was going on and what my blood results where. He done a MRI brain scan as he was concerned about my prolactin levels. This test was normal and he didn't do any other tests he told me it may be to do with my medication and sent me home...

I decided to persevere with the pains and waited a week untill I started getting left side chest pain whilst awake.

I decided to go back to hospital whilst at hospital they done basic cardio bloods which showed raised CRP again, they also done a CT scan of my chest and checked my aortic root as I have family genetic problems with cardiac issues. The dr said my results looked normal but I have a small kidney stone which I have had for years but is causing no issues. The dr prescribed me lansoprazole as she said stomach issues can sometimes mimic chest pains and sent me back home.

Now about 2 months into this constant bedtime nightmare, I can only sleep in a sitting position, I still get all of the same issues but not as severe as lying flat. I kept thinking to myself i have been checked maybe it will pass. Now when I try to sleep I'm getting spasims in different areas of my body and sometimes I feel like im vibrating, but its mainly central chest and stomach pains and weird rotten smell. It is still worse as im drifting into sleep. I have now noticed during the day my heart is beating very slowly whilst awake sometimes beating 45bpm making me dizzy, this comes and goes but sometimes I have whole days like it. I decided to go back to my doctors surgery where I saw a nurse.

After telling her my full story she ordered bloods again and booked me for a week long ecg fitting.

My results showed my FBC was satisfactory but my white blood count says above high reference limit, my lymphocyte count above high ref limit and the same with monocyte count but the report says no further action...

My ecg week recorder showed 38 counts of brachicardia, this has only been since I have been having this issue but the doctor has put it down to medication that I am on... 

I have worn a fit bit for 3 years whilst being on this medication and my heart has never dropped below 60 even whilst asleep. I am not particularly fit, my normal resting rate is between 75-90bpm but the doctor is not concerned and has just put it down to my meds telling me it could be the pregab and lansoprazole...

After having this done the doctor booked me in to have a endoscapy as he thinks this could be a stomach issue as I have lost weight. I had the endoscopy today and was told this is all normal although i am waiting for biopsy results to check for celiac...

My doctors surgery is under a lot or pressure resulting in me seeing somebody different every time I go. They look at it like you have had your heart checked so your not gonna die which means every time I book an appointment I have to wait weeks. It has been 4 months and I cant even lie comfortably in bed to sleep due to pain. Some nights I can't sleep at all. Its not anxiety as I have had days where I'm happy I've had a good day im not worried and bang it hits me as I'm drifting off to sleep. It's also now happening during the day where I will get random spasims, pain, brachicardia and odd foul smells.

I honestly feel lost... I cant live like this without treatment. I'm worried they are missing something and I'm going to end up too ill to treat. I am worried sometimes that if I go to sleep i might not wake up...

Im not one to moan usually I can deal with most illnesses, i have had meningitis before and went to work untill i passed out. I can tell this is something serious... One thing they haven't done is a body MRI also there are other tests and bloods they can check. I feel like the doctors I go to are fed up with me. I'm thinking could this be neurological due to the phantom smells, it happening during the onset of sleep, the sharp pain in the head and random spasims.

This might sound awful but hearing my tests are normal upsets me as I know there is something wrong with me that is getting worse and I'm just left to suffer in pain as there is no treatment. Every night scares me.

What do I do next? Has anyone ever been through something similar to this? Any advice is greatly appreciated.

Apologies for the grammar & Thanks for reading.

Hannah_Alumni

Hello @Jaykay00

I'm so sorry that you have been through so much with your health and feel like you have been passed around a bit at your GP practice and at the hospital. If you think seeing a neurologist would be beneficial, you could ask for a referral from your GP.

I would advise asking for a sit down with one of your GP's and ask that you see them each time you need to. When I was being passed from pillar to post a bit, I kept a diary of all my symptoms and times they occurred. So I could hand that over at appointments and not feel like I was repeating myself. 

Please keep us updated  

DayDreamBeliever

I know exactly what you mean about when tests are normal and they act like it's great news but it's just upsetting because you know something is wrong. I know it all too well unfortunately! 

As for the high white blood cells this is indicative of an infection so likely why they said no further action for it especially as it was across several white blood cell types.

I can't speak to the pains when you try to sleep really but I do know from experience that acid reflux can give really horrible chest pains and I have to take lanzaprazole daily to prevent this too - are you taking the right dose every day?

Regarding phantom smells I get these ever since my first covid infection. Most often they are horrid rotten smells. Have you had covid at all? Because it's a long term side effect for many unfortunately!