Hypotension

[Eraena]

I've been dealing with chronic symptomatic hypotension since May. I've tried everything I could to raise it: Water, salt, compression stockings, medication and even exercise. I had many blood tests done, which all came back normal. My systolic doesn't get too low usually around 80-95, but when my diastolic goes down to mid-low 40's I start to feel very sleepy/drowsy/weak and feel the need to breathe faster. One time I was exercising and checked my BP, it was 125/52. 40mins after, it was 81/52. I haven't fainted, but I guess it's concerning because of constant lightheadedness and feeling lethargic.

Should I go to a neurologist or an endocrinologist? Because I find it very strange for it not to improve with lifestyle changes

[StayAtHomeMom]

I would try whoever is our POTS specialist.

You said you have tried medications. Do you currently take anything at all that could lower it and have you tried midodrine?

[yogini]

Which medications have you tried? There are several that help hypotension.

[Eraena]

@StayAtHomeMom

The only medication I'm taking now is midodrine, 2.5mg once a day. I thought about calling the doctor to see if I can up the dose.

[Pistol]

I would increase the dosage before I would see another doc. Often meds are effective but we have to slowly increase the dosage - it sounds like that might be the case with you. I would ask your doc to give you a titration schedule of midodrine: you can up the dose after whatever time he says according to your symptoms. 

[yogini]

55 minutes ago, Eraena said:

@StayAtHomeMom

The only medication I'm taking now is midodrine, 2.5mg once a day. I thought about calling the doctor to see if I can up the dose.

You should consult with your doctor. Most people take midodrine a few times a day and the dose you are on is low. But also there are a few other medications that increase BP. If midodrine doesn’t work for you.  It takes time to find the right treatment.

[dancer65]

I had low blood pressure about 80/40 once I tritiated midrodine up to 7.5 X3 a day I saw a difference 110 / 70 most of the time . Usually get low bp in evenings once midodrine has worn off , or if I'm tired.

I hope you get it sorted , low bp makes you feel so dreadful. 

[StayAtHomeMom]

5 hours ago, Eraena said:

@StayAtHomeMom

The only medication I'm taking now is midodrine, 2.5mg once a day. I thought about calling the doctor to see if I can up the dose.

With doctor's permission it is possible. I take up to 5mg up to 3 times a day. Doc let's me adjust as needed. 

[Eraena]

15 hours ago, StayAtHomeMom said:

With doctor's permission it is possible. I take up to 5mg up to 3 times a day. Doc let's me adjust as needed. 

The doc said to take 1 2.5mg and half another one, to make it half of 5 for a few days. Then change it to 5. I can't wait to see the results and feel better.

[StayAtHomeMom]

6 minutes ago, Eraena said:

The doc said to take 1 2.5mg and half another one, to make it half of 5 for a few days. Then change it to 5. I can't wait to see the results and feel better.

Good luck. I am not sure if you have side effects from it. I get the tingles (mostly in my scalp). Even after a year I still get it most of the time for up to an hour while it is in my system.  The first time it happened it really freaked me out but generally speaking it is a nuisance more than anything. Just wanted to warn you. My doctor doesn't seem concerned but if it happens to you make sure you let your doctor know. 

[Eraena]

1 hour ago, StayAtHomeMom said:

Good luck. I am not sure if you have side effects from it. I get the tingles (mostly in my scalp). Even after a year I still get it most of the time for up to an hour while it is in my system.  The first time it happened it really freaked me out but generally speaking it is a nuisance more than anything. Just wanted to warn you. My doctor doesn't seem concerned but if it happens to you make sure you let your doctor know. 

That was my first side effect. I was like, "What's happening to my scalp?". It usually starts 40mins after, then lasts around 2 hours.

Do I have to take it for several days for the body to get used to it? Or is it a medication that can take affect on the first day of taking it?

[StayAtHomeMom]

3 hours ago, Eraena said:

That was my first side effect. I was like, "What's happening to my scalp?". It usually starts 40mins after, then lasts around 2 hours.

Do I have to take it for several days for the body to get used to it? Or is it a medication that can take affect on the first day of taking it?

I notice the difference in about 30 minutes. Especially when I feel awful. 

I noticed the tingling is less when I am more active. 

At first I didn't notice the difference (never had BP issues) but over time when I didn't take it I would notice I didn't take it or I would notice when it was wearing off.

At this point I take 5mg when I wake up for the day. And on a day I know I am going to be active I take a second dose after 5 hours. I almost never have to take the 3rd dose my doctor says I can have. If I try to be active without it fatigue sets in and I can barely function. With it I can work most days and my life is a little more normal. As long as I take it slow

[bombsh3ll]

I know how awful you feel because I have similar symptoms - but with normal/highish BP. It may actually be in your favour that your BP is low because you have something that can be treated, and even if higher or more frequent doses of midodrine don't do the trick, there are a number of other drugs that can be used either alone or in combination to raise low BP so please don't give up!

I have actually wished at times that my BP was low so that I had an angle from which to attack my symptoms! Low BP meds have never helped me, although they do help some with POTS but normal BP.  I have read many POTS forum posts & never come across anyone with very low BP & felt bad with it, who didn't report feeling much better once they got it raised. 

Good luck, I think you have every reason to feel hopeful!

B x

[Pistol]

I have both - low AND high BP. I can tell immediately when my BP goes above 130/80-ish. And I feel wonderful and my BP is 90/50. All of my life I have been hypotensive and feeling GREAT with it. Only when I developed POTS did my BP go up and I feel awful when it does. So - we can totally be well with low BP but it is when our bodies are not accustomed to it tht it presents a problem. Well - wait - also when it drops TOO FAST that we become symptomatic. What do you think about this theory? 

[StayAtHomeMom]

5 hours ago, Pistol said:

I have both - low AND high BP. I can tell immediately when my BP goes above 130/80-ish. And I feel wonderful and my BP is 90/50. All of my life I have been hypotensive and feeling GREAT with it. Only when I developed POTS did my BP go up and I feel awful when it does. So - we can totally be well with low BP but it is when our bodies are not accustomed to it tht it presents a problem. Well - wait - also when it drops TOO FAST that we become symptomatic. What do you think about this theory? 

I could see that being an good theory. My nephew will get small seizures when he gets a fever. The fever is usually only 100 but it jumps so fast that it causes his body to react. I never thought of it that way. Maybe that is why POTS in general is so bad. It isn't the specific numbers but the fact that everything jumps or drops so fast. 

[Eraena]

What causes isolated diastolic hypotension? I had (literally) 4 biscuits with gravy and went crazy with sea salt, then drank close to 28oz of water. My BP before was 94/53, now it's 110/53. It seems top number responds to water, salt, medication, but my bottom number wont budge. The bottom number is causing all the symptoms, and haven't seen it past 60 in a while.