Scared

[Lee88]

I’ve been ill for a long time, first diagnosed with chronic fatigue syndrome, about 5 years ago I became very anxious so my doctor put me on citalopram and it eased my symptoms a bit, but I had to struggle through some bad side effects. Further down the line I was put on duloxetine, a lot of my symptoms seemed to ease. I assumed maybe I did have depression. However since Christmas things have gone bad, I’m having all my old symptoms but worse. To top it all off I weigh 28 stone, I am scared for my life, the only medication I’m on now is propranolol. I seem to shake all the time when lying down, I always feel revved up, sleep is nigh on impossible and I think I’m having manic episodes from adrenergic crisis, I’m stuck as to what to do. With the medication no longer working is it likely, another snri wouldn’t work now? If I’m honest I think this will kill me soon, because I’m not receiving the care I need. 

[JimL]

If you're not receiving the care you  need, maybe it's time for a new doctor. Time to start from the beginning with a doc that knows what he or she's doing. 

[Lee88]

I’ve been referred to a cardiologist, but that could be a long wait, this is all from being misdiagnosed in the first place and them inadvertently treating me with snri and me showing improvement. I’m worried about the neuro symptoms, I become extremely agitated, gurn my jaw, make funny noises and I think this could be because of excess adrenaline. I guess I don’t know what to do, other than wait til I die.

[bombsh3ll]

I'm so sorry you're struggling Lee. Welcome to the forum. Which country are you in? 

Have you had a urine catecholamine test to exclude a pheochromocytoma?

I got one of these pretty quickly following a visit to A&E with very high BP. 

Do you have a blood pressure machine to see what your heart rate and blood pressure are?

I would start keeping a symptom/BP/HR log if you are not already doing to show the cardiologist. 

Also I have found that being persistent, calling the waiting list secretary and also seeing if there is a cancellation list you can get on are helpful in being seen as soon as possible.

B xxx

[Lee88]

I’m in the UK, I’m honestly at a loss, after feeling okay for a long while the way it has come back is really scaring me. I know something is wrong but what, I don’t know. I’m having an mri on my cranicervical spine because I felt like that could be at play. I’m sort of coming to terms with the fact I’m probably not going to come through this. 30 years was a good run.

[JimL]

58 minutes ago, Lee88 said:

I’m in the UK, I’m honestly at a loss, after feeling okay for a long while the way it has come back is really scaring me. I know something is wrong but what, I don’t know. I’m having an mri on my cranicervical spine because I felt like that could be at play. I’m sort of coming to terms with the fact I’m probably not going to come through this. 30 years was a good run.

I just had another cervical fusion 5 weeks ago. I had C2-4 done this time. C4-6 in 2012 and L4-5 last halloween. I'm a mess. The sad thing about all of this is that I lost a lot of weight to get healthier and then this shite. I lost 170lbs. I should be doing better than this and no one can give me answers yet. 

[CarolS]

Hi Lee. Have you been on the POTS UK website? They have a list of doctors on there who are POTS and dysautonomia literate and aware. I wouldn't accept a referral to just any cardiologist. Ask for one from their list. The trouble is that cardios who aren't particularly knowledgeable about dysautonomia can think you're perfectly fine according to their tests. You end up in a worse place than before seeing them. Sounds like you're in such a rough patch right now.  Wishing you lots of luck with getting better treatment.