I don't know where to turn.

[half-glass-full]

I am currently on PD Dialysis and an EGFR 4 age 53

I have had a problem for some time now. It starts with severe nausea, rapid heartbeat(130),fast shallow breathing, confused/anxious and then lastly deep long breaths. I'm basically incapacitated on the sofa. It happened once about 6 weeks ago but now it is becoming most days.

I have been to the hospital and been checked out but it didn't happen when I was there.

I was discharged after they checked my heart and lungs. I'm struggling with hypertension too.

My bicarb was low around the first time (15)it happened so they gave me 9x 500mg a day for a week.My bicarb normally is about 24 when I'm taking bicarb tablets(9 a day) I saw my nephrologist a few days ago and said that the symptoms seem to improve when I take bicarb so she gave me 6 x 500mg a day. Unfortunately I am still having these episodes. I often take 3x bicarb when these episodes happen and it normally stops the episode but I don't know if this is all in my head now.I am basically unable to leave my home.

I have also been 'fainting' a few times where I've been rushed to hospital.

I'm thinking of seeing my GP and asking for some anti-panic drug. I don't feel particularly depressed but I'm quite anxious when these episodes are happening.

My nephrologist is confused. The nurse says I'm highly stressed but I don't feel I am. If these are panic attacks they shouldn't last 8 hours surely? I'm completely lost with this, I don't feel I can go on like this.

I will say when these episodes are finished it takes me a while to come back to normal but then I'm reasonably well. I can function otherwise I'm totally incapacitated when it happens.

Thanks

[Bassetmommer NKF Ambassador]

Jeepers, I get so mad when doctors blow things off. You know your body and you know when you are well, and when you are not. You say you're struggling with BP. Does you BP crash when you have these episodes? Do not let the docs dismiss you. I am sure, it is not in your head.

Panic attacks can present in many ways. Sometimes, it is not evident what is happening. Your body chemistry speeds up and you get flooded with cortisol. Your amygdala activates and send signals to your body that you are in danger. So, the body does three different things. It fights for you protection by making you angry and strong. Or it makes you want to get away or the flight response. OR, the one most people do not know about it freeze. Think of a rabbit when you see one close. They do not run, they freeze. They literally shut down things, so they are quiet and left alone. You may be experiencing this Freeze trauma response. Your body activates when something triggers it. You may not even be aware of the trigger. Chemical flood your body and then... when the trigger is dissipated, your body shuts down. Like when people faint at the sight of something gruesome. You have a heightened response followed by the crash or let down.

I just suggesting this. I am a certified trauma specialist, so I do know what I am talking about. My suggestion is to monitor your BP with a cuff or some home device and see if it spikes and then crashes. Keep us informed

[half-glass-full in reply to Bassetmommer]

Thanks so much My BP crashes when I faint but comes back up very quickly. What happened about 2 months ago was they put me on the PD machine. I seemed OK for a couple of weeks but then my numbers went terrible and I could not get up without being dizzy. If I had not laid back down I would have fainted. I was put back on manual PD and my numbers improved and the dizziness.

My main concern is the heavy nausea and then these long and debilitating episodes that have gone from once a month to every day. They have no exact time frame(anything from 2 hours to 8)

My blood pressure in the mornings is 150/100 and then moves on up throughout the day. When these episodes happen my BP spikes to a crazy level-240/170 pulse 145. It will calm down but I haven't monitored it the whole day.

[Bassetmommer NKF Ambassador in reply to half-glass-full]

wow, that is high. 240/170 with that pulse is pretty serious. I think you need to get the doctor to pay attention to this. OR get a new doctor. There is a blood pressure monitor that you can wear all day and it records your episodes. How close after completing PD does this happen. You may be shifting your electrolytes too much.

[half-glass-full in reply to Bassetmommer]

Thank you. I'll keep some notes on times when I do my PD and when I get sick.. I'll buy a BP monitor that logs everything all day. I'm normally too scared to do my BP as I don't want to go to the hospital again. When I was last at the hospital(few days ago) they took blood about an hour after the episode. Nothing seemed out of the ordinary. I have all my electrolytes on my laptop from 2017.I called the ambulance when my BP was 240/170 an hour later was 175/140 and 2 hours later about 150/103. My pulse slowly declined over about 3 hours to 70.

I have also had a heart monitor on for 48 hrs, apart from being nauseous they reported it was fine. I have asked if I can have one on for a week.

I'll also add my restless legs are awful at the moment. Can start anytime in the evening and even extends to my arms. Can't sleep much whatsoever

[Merny5 in reply to half-glass-full]

Have you ever been diagnosed with RLS and are you on any medication for it?

[Badger2024]

Totally agree with Bassettmommer that you need to see a doctor to get to the cause of this urgently. Get a new doctor. You are at high risk of having a stroke. Wearing a blood pressure device for a couple of weeks will give a lot of information that will enable them to prescribe the correct blood pressure medication

[Darlenia]

Our bodies can do odd things sometimes. There are panic attacks and there are also anxiety attacks. The later builds up over time and worsens with lack of sleep. Then there's kidney failure and dialysis thrown into your mix and more. I find your nurse's statement that you're highly stressed quite interesting. I'm a care partner to my husband who went on dialysis and more and am subject to anxiety - oddly, that too produces heart issues (often right before sleep sets in). At one point, totally miserable, I went to our GP who reviewed my labs, prescribed a med to get me to sleep through the night, and I straightened up. I keep in mind, though, that I have a tendency to go down that road. I think it's a good idea to have a conversation with your primary doctor. S/he will listen to you and review your labs with suggestions on next steps - directing you to the right specialist(s) to set you on the right path if that is needed. Hugs!

[GussieGirlOR]

How scary this mst be for you. Definitely ask your doctor for an anti anxiety medication. I know they work for me. GussieGirlOr

[ShyeLoverDoctor]

See a cardiologist asap. anytime your bp is more than 185/95 you are at risk for cardiac events. It could be panic attacks but I think any physical reason should be looked at fully first. I am not a dr but have been chronically ill a long time. If your BP starts at 150/100 in the am and gets worse in my own experience you are having serious issues . You need to be on bp meds at the least. How long have you been pd?

On the other hand. I hated being told I was anxious. Hate it. Toward the end of my hemodialysis treatments I would start to get panic attacks. My pulse and bp would go high and I’d get chest pain.

[TudorQueen]

Please see Cardiologist asap. I really sympathize. I used to black out a lot when I started Methotrexate for Rheumatoid. Miserable scary feeling . I thought I was dying. Sweaty, hot, dizzy, feeling out of control and within 30 seconds crashed into pavement. No warning. Puts you off going out doesn't it? Please ask Pharmacist to evaluate drugs you are on or your Dr. Up water intake. Eat more. Ask Dr to evaluate for POTTS..dizzy when rising from lying or sitting in position, also ask for Echo..ultrasound of heart..am sure Cardio will do this and maybe also a Tilt Test?I pray they get to the bottom of this soon and get you treated after a correct diagnosis . All the very best.

Breathe in for 5, hold them breathe out for 5. Repeat x 5