Low blood pressure in CBD or dementia?

[Drjazz]

I have been recently diagnosed with CBD and frontotemporal dementia. In the last few months, my blood pressure has been dropping, on the verge of hypotension. My pulse rate has always been low, but now its sometimes under 50 bpm. Often I get dizzy. Has anybody else had a similar experience?

[Dadshelper]

Is your blood pressure low all the time, while moving, or when standing up? I would definitely inform your doctor about this, if you haven't already. Dad never really had any persistent b/p issues like you are describing.

Ron

[Drjazz in reply to Dadshelper]

I'm dizzy often when I stand up, sometimes it just happens sporadically while I'm walking around.

[Dadshelper in reply to Drjazz]

Having b/p drop when first standing is not uncommon, in anyone really. It may just be more noticeable with the PSP issues. I'd recommend having someone by you while you stand and walk, to help prevent a fall. If that is not possible then getting a walker or cane to help would be wise. Make an appt with your doc to discuss this also.

Ron

[honjen43]

If my husband's story below is what you are experiencing, then get yourself a cardiology appointment fast! And get it checked out. It may be you can be fitted with a Pacemaker in a very simple op and may solve that particular problem. Ignoring a low heart rate could be dire! Don't wait for due process of hospital appointment! Go private if you are able.

My husband had very low heart rate before being diagnosed with (unconfirmed by autopsy) CBD and/or FTD. He would find exercise, even simple tasks, very tiring. He spent a number of hours looking grey and 'lifeless' and exhausted and had to lie down until he recovered.

During a trip to UK when we went on a ferry and had to walk a short distance up a steep hill with steps, he passed out on me, and spent rest of day utterly wiped out. Stupidly, I did not take him to hospital as we were in a remote area!

On returning home I gave a report to his GP who sent him straight back to his heart specialist and within 6 weeks he had a Pacemaker fitted. This fixed the low heart rate problem and he had no more grey episodes.

Hope you get a good result!

Hugs

Jen xxx

[Drjazz in reply to honjen43]

Seeing the Dr. shortly. I will definitely tell him about it.

[honjen43 in reply to Drjazz]

Looking back on my hubby's experience, we should have been more proactive. It went on for a year or more before he was referred to specislist, even then, they said a Pacemaker was not 'urgent' before we had our trip to UK.

Good luck!

Jen xxx

[kenh1]

Are you on any medication I.e. For heart disease. As others have said contact your doctor for an overall medical check.

[Drjazz]

I've never had any heart problems before. I take antidepressants that should not affect the heart.

[daddyt]

I experience it - not regularly. It can be sitting or standing and more recently going to lay down. MDS thinks it's probably a bit of CBD along with the PSP.

Tim

[Espink50]

Meds could be a factor if taking any.

[rriddle]

This could be orthostatic hypotension (OH).

Have you discussed this symptom with a neurologist? I think it's wise to see a cardiologist for an evaluation or an autonomic specialist.

As we get older, there is a greater chance of developing OH (even without a neurological disorder). But OH in the context of dementia and parkinsonism points to Lewy body dementia (not CBD or FTD).

Do you have RBD (REM sleep behavior disorder), where dreams are acted out? Do you have hallucinations?

Robin

[Drjazz]

I have had a couple of RBD episodes lately. No hallucinations. I have an appointment with my neurologist in a couple of weeks and I will definitely bring it up.

[Astridnova]

You could be suffering from hypothyroidism, which causes low pulse rate and reversible dementia. Sometimes it is only detectable with a blood test for T3 and T4, but doctors only test for Thyroid Stimulating Hormone. My mother had very similar symptoms and was diagnosed with alzheimers. In fact, she had hypothyroidism and pernicious anaemia. She saw doctor after doctor and they all missed it, until one tested her T3 and found it was low. To get these tests, you need to find a doctor in your country who is sympathetic to thyroid problems - most doctors are not well informed. One way to find a sympathetic doctor is to ask people in the thyroid section of HealthUnlocked. Best of luck. I'm a psychiatric nurse and I can tell you that it is actually very difficult to diagnose particular dementias without an autopsy. There are many causes of dementia and many are reversible, but for some reason, doctors are not well-informed about this.