Mornings- Does Anyone Have The Answer with OI?

[Machair]

Mornings are absolutely dreadful. I have OI and getting out of bed is a challenge that I have so far managed to do for most of the 24 years I have had this disease. I am thinking it is mostly due to overnight dehydration, so try to ensure I drink some fluids before bed, but still I wake up with a headache, coat hanger pain, palpitations, sweating, breathlessness, and sometimes dizziness, and my pulse pressure is very low, as is my morning blood pressure, though lying is a lot better than standing. I have also noticed my urine is very concentrated first thing as well - anyone have all this and any ideas how to improve matters? I did try raising the head of the bed but that didn't help much.

 

[Revel]

My POTS specialist advised that I drink 500 ml (preferably an electrolyte mix) at least half an hour before I attempt to get up. It was hard to do at first, as I can't manage large volumes of fluid all at once, but it got easier with practice. I just had to remember to take it to bed with me the night before!

 

[Machair]

Thank you so much Revel I will try that. How are you if you don't take it compared to if you do? Do you wake up with a headache everyday or are you dizzy when you stand up?

 

[Revel]

How are you if you don't take it compared to if you do? Do you wake up with a headache everyday or are you dizzy when you stand up?

@Machair, I have had POTS (and ME) since early childhood. However, I wasn't overly troubled by headaches and difficulties with rising in the morning until I reached my mid-40s . . . then the wheels fell off! I had to give up work, driving and even using the stairs in my home.

This increase in symptoms continued for several years and, yes, I did find drinking electrolytes first thing useful, compared to if I did not (it wasn't a magical cure, but I could perceive the difference).

I am now in my mid-50s, and my symptoms are much more bearable (especially the coathanger headaches and migraines). I suspect that the early hormonal changes as I approached the menopause triggered the worsening POTS. Now that I am through this stage of my life, things are a lot more settled in this regard. I still have to deal with POTS on a daily basis, but the particular symptoms you are describing are no longer as bothersome.

 

[Machair]

Thank you so much Revel this has helped me more than words can say. I am having a late menopause and I think this is also affecting my pots as well in the way you describe. I am 59 but my last period was only a year ago and I can trace the deterioration in my POTS and OI to the start of the perimenopause which for me was 55. Hopefully I can look forward to less symptoms- how long did it take for you to see an improvement after your last period?

 

[Revel]

how long did it take for you to see an improvement after your last period?

If I recall correctly, there was a gradual tailing off of bad OI mornings about 6 months prior to my last period. By that I mean that it was no longer necessary for me to load up with fluids first thing before getting up.

The migraines ceased at about the same time, but the coathanger headaches continued for several months after. I still get the latter, especially if I have been overdoing it or am dehydrated, but they are less intense pain-wise and don't last as long.

Last year, a complex cyst was found on one of my ovaries and I had to have the offending organ removed. Despite supposedly being one year "post-menopause" by this stage, the surgery caused me to go through what felt like a second menopause. All of the OI symptoms returned briefly but, thankfully, receded after a few weeks.

What happens in the mornings these days is that within about 30 seconds of waking, I get a sudden surge of tachycardia and feel as though I am overheating. This lasts for a minute or so and it makes me feel faint/shaky/nauseous, and so I remain lying down until these symptoms subside sufficiently for me to sit up. It seems to be a POTS version of a "hot flush", no sweating, more like a sudden mini pre-syncopal episode with the addition of a wonky thermostat. I was getting upwards of a dozen of these a day in the first year post-menopause, which was exhausting. Now I am down to about 4-5 and, again, not as intense or debilitating as they were to begin with. It's annoying but bearable.

Yes, going through menopause when you already have POTS to contend with can be a miserable experience. I simply wasn't aware of what was happening at the time and was very concerned that this sudden downturn in health was going to be permanent, my new "normal". It's a shame that both my POTS consultant and GP failed to put 2x2 together and provide the support and reassurance when it was needed.

I do hope that things improve for you very soon, @Machair. Best wishes to you.