Update after Consultant Visit

I visited my POTS consultant this week. Unfortunately I got myself in a complete state before I went which meant I was dry heaving, snappy as hell and a little uncommunicative! At least my husband / family and friends all know that this is how I act when I am nervous / stressed out and know that as soon as the visit is over I will be back to my normal charming self!

We were actually seen 20 minutes early (due to nerves we actually arrived at the hospital at 10.08am the appointment wasn’t until 11am!) so that was good as my consultant can run a little late – purely because he likes to spend time with his patients and address the concerns that they may have. As usual my husband and I were the youngest people in the waiting room by about 30-40 years. I am seen in the geriatric clinic! Although my consultant is geriatrics and general medicine. Its always quite amusing as the other patients cant work out why these young whipper snappers are attending their clinic!

I confessed that I was no longer taking midodrine – the side effects were just not worth it. I did have massive improvements on the drug – no more ptosis, mental functioning better able to be out of bed for longer. The down side was severe stomach pains and being unable to urinate. The pain from both of these side effects would land me back in bed…. so I admitted defeat. My consultant said it was a shame but that’s the way it goes sometimes. So I have now been started on Ivabradine a medication that is used for congestive heart failure and used off label to treat inappropriate sinus tachycardia and postural orthostatic tachycardia.( some drs are saying that POTS and IST are actually the same thing) Unfortunately one of the side effects can be lowered blood pressure, which as my regular readers will know a lowered bp is something I do not need. So I have started on 2.5mg twice a day.

Ive already noticed that my heart isn’t pounding out of my chest when standing. Ive checked my pulse and its still running fast over 100 bpm but not going above 120bpm. My pulse needs to reach over about 110bpm before I notice it. It sounds strange but I guess my body is so used to it running fast I no longer notice it. It does feel really strange to stand and not have my heart pounding! The downside is I am light headed, there has been no massive drop in blood pressure and with the heat we are experiencing at the moment its difficult to tell if its the heat or the medication causing this, time will tell. My consultant is keeping a close eye on me as he feels I may need my pulse to run that high to counteract the low blood pressure, so we need to proceed with caution.

My consultant checked my heart as I have been experiencing a lot of chest pain on exertion. He didn’t detect anything and those of you with POTS will know that chest pain is quite common. So I am not immediately concerned about it.

The good news is that my consultant is trying to start an EDS clinic for the southwest as most EDS patients find they will see a rhuematologist to get diagnosed and then be discharged from their care within 12 months. Basically EDS patients are falling through the cracks with no service looking after them. My consultant is trying to team up with a geneticist who is keen to identify the gene behind EDS 3 or HEDS as it is known.

That would be fantastic if they could get this clinic started as my consultant told me there is no NHS physio therapist in the southwest trained in EDS patient care. Which means unfortunately most of us seeing a physio will come away with more problems than when we initially started with them. My physio claimed to understand EDS but had limited knowledge of POTS which is where the problems started and ended up with me packing physio in. This cant be right and we need better understanding across all fields of medicine.

Ive been resting up since my visit, I also managed to have another migraine on Monday. They are just wiping me out. So its been a pretty exhausting week.

Thanks for reading.

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