Poll on blood pressure

[charlie1]

@ GGL, Mestinon is given for myasthenia gravis but many neurologists are now giving it for POTS as it works on the acetylcholine receptors. Not all Pots people have the success that I did, but me it was a MIRACLE breakthrough by allowing me to go from being bed bound to being able to walk the yard within a week! I still have the PEM though whenever I do more than my body is able (which unfortunately, I never know until its too late). Many people have GI issues from the Mestinon and cannot tolerate the side effects but I was fortunate and did not have that issue (likely b/c I have very slow GI motility)
Mestinon is my neurologist's go to drug if Florinef does not work. I will look for a study confirming the use of Mestinon in POTS.

 

[charlie1]

Dr. Blair Grubb, a leading American doctor was part of this paper which outlines the side effects, mechanisms and side effects and more of Mestinon in POTS. http://www.stars-us.org/files/file/Mestinon UT final.pdf

Pyridosgtigmine is Mestinon http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38923

 

[Gingergrrl]

@charlie1 Thank you for all the info and I looked at both of the links that you posted. I will be having a bunch of tests in the next few weeks that will help to clarify my exact issue so at present, I am not sure if this med would be right for me, but I will keep it in mind for the future.

 

[daisybell]

This is new for me... I have developed low BP, seven years in.
Just discovered yesterday when my sitting BP was 100/60. Previously it had been slightly high when measured at the doctors and normal when I did it at home.

 

[alex3619]

I have hypertension which is controlled by meds. However when tired, crashing or pushing myself I am subject to extreme OI hypotension and loss of consciousness, and during my TTT my heart stopped. There are lots of subgroups when it comes to blood pressure.

 

[MeSci]

I have hypertension which is controlled by meds. However when tired, crashing or pushing myself I am subject to extreme OI hypotension and loss of consciousness, and during my TTT my heart stopped. There are lots of subgroups when it comes to blood pressure.

Yikes - not for long, I hope!

There sure are a lot of variations. Even with my ACE inhibitor, yesterday (an unusually bad day) my bp was up at 180/106 at one point!

As it went down again later to to a saner level, I have come to the conclusion that it must be completely dependent on my state of health at any given time, and if only I can fix the underlying problems it will normalise.

Oh, that Holy Grail...

 

[stridor]

BP 130/80 - 140/90 and taking 3 antihypertensives.
A couple of hours of light gardening will drop BP to 90/60. This is combined with an energy "crash" but without PEM. Stress-dosing hydrocortisone helps but does not eliminate this.
I also have CCSVI which means blood flowing the wrong way in veins of neck. I don't tolerate low BP well but am not sure whether this is a factor in that.

 

[Gingergrrl]

I have hypertension which is controlled by meds. However when tired, crashing or pushing myself I am subject to extreme OI hypotension and loss of consciousness, and during my TTT my heart stopped. There are lots of subgroups when it comes to blood pressure.

@alex3619 How scary that your heart stopped during the TTT! Was this recently or a long time ago? I hope you are fully recuperated from this now and so sorry to hear you had to go through that. Can they give you Midodrine or anything to increase your BP since you also have high BP?

 

[alex3619]

@Gingergrrl , this was indeed a long time ago. I don't recall when now, but more than a decade. I have to take meds to lower my BP. My high BP actually protects me from OI until I get really tired, then it hits me. This used to happen when I was going to uni to study for my biochem degree as I never had enough sleep and was always pushing myself ... so I was often passing out when moving up stairs. I also respond badly to adrenaline in dental unaesthetic, with a typical OI delayed response.

 

[Tired of being sick]

Believe it or not, mine is all of the above..

Meaning I can not take any blood pressure altering medications..

This makes my POTS untreatable..

except

My only choices to managing this monster are lying in bed many times throughout the day and drinking at least a half gallon of water ..
Actually I doubt the water is helping my condition very much..

 

[MeSci]

Believe it or not, mine is all of the above..

Meaning I can not take any blood pressure altering medications..

This makes my POTS untreatable..

except

My only choices to managing this monster are lying in bed many times throughout the day and drinking at least a half gallon of water ..
Actually I doubt the water is helping my condition very much..

Have you tried drinking fluids containing electrolytes, rather than water? Do you know your blood electrolyte levels (e.g. sodium and potassium)?

 

[charlie1]

Tired of Being sick- I can't take BP altering meds either. I don't know if Mestinon is really classified as such (it works at the acetylcholine receptors) but it helps my POTS immensely! Beta Blockers and midodrine cause my heart rate to fall dangerously low and florinef did nothing for me so I understand how frustrating it is when the usual 1st line meds don't work for you.

 

[charlie1]

@ Gingergirl - how did your recent tests go? How are you feeling now?

 

[Tired of being sick]

Have you tried drinking fluids containing electrolytes, rather than water? Do you know your blood electrolyte levels (e.g. sodium and potassium)?

No,Salt stick electrolytes, yes

Yes,,they are in the normal range

Tired of Being sick- I can't take BP altering meds either. I don't know if Mestinon is really classified as such (it works at the acetylcholine receptors) but it helps my POTS immensely! Beta Blockers and midodrine cause my heart rate to fall dangerously low and florinef did nothing for me so I understand how frustrating it is when the usual 1st line meds don't work for you.

Do you have POTS with both hypertension and hypotension?

 

[Gingergrrl]

@ Gingergirl - how did your recent tests go? How are you feeling now?

@charlie1 I was in the hospital for 5 days and had a lot of tests and to make a long story short (I have a whole thread about this so don't want to bore everyone!) they feel my angina type episodes are due to severe autonomic issues including low BP and low blood volume but still trying to rule out "microvascular angina." But it seems unlikely that I have a totally separate diagnosis in addition to the autonomic problems from ME/CFS which all started with tachycardia and POTS.

I am currently taking Midodrine and tried a few doses with the lower dose (2.5 mg) working best for me. I also started IV saline 1x/wk yesterday and hoping to increase the frequency b/c it helped. My doctor has mentioned some other alternatives but we are starting with these. I was also given nitroglycerine spray for severe episodes but thank God, so far, have not needed to try it.

Like you, I tried Florinef for three months and it did nothing helpful and gave me headaches so we stopped it. I still take a micro dose of Atenolol which controls my tachycardia. It is like baking a cake and you have to find exactly the right doses of each ingredient! I totally forgot that I had talked to you about Mestinon! Does it raise your BP which right now is a big issue for me. Mine will be in the 80's/50's without Midodrine. Also, have you ever heard of or tried Droxidopa?

 

[charlie1]

@Tired of being sick, I have POTS with hypotension and vasovagal syncope.(NCS)

 

[charlie1]

@Gingergrrl
" Does it raise your BP which right now is a big issue for me. Mine will be in the 80's/50's without Midodrine. Also, have you ever heard of or tried Droxidopa?"

Mestinon helped with my tachycardia but did nothing for my low blood pressure.(although I think I read it might help with that in some people). Now my biggest problems are PEM and the chronic low blood pressure which is made worse lately after eating a meal. Recently a naturopath took interest in my vitals and at an appointment he did the Tilt Table home test. Sitting I was 92/65 and it dropped to 65/44 after standing 3 min. That was with compression stockings and Mestinon.

In desperation for help, I have been trialing Zoloft (an SSRI) @ 50mg/day to see if will raise my bp. I didn't think it would make a difference but for whatever reason, I lately have been getting a few normal bp's recordings which I have NEVER had, even as a teen! This is an insidious illness so it might not be related and I'm afraid to get too excited so that plan for now is to continue with the daily Mestinon , Zoloft, compression clothing and Sudafed.

I have heard of Droxipoda but have not tried b/c it was not an option with my neurologist.

 

[Gingergrrl]

@charlie1

Mestinon helped with my tachycardia but did nothing for my low blood pressure.(although I think I read it might help with that in some people). Now my biggest problems are PEM and the chronic low blood pressure which is made worse lately after eating a meal. Recently a naturopath took interest in my vitals and at an appointment he did the Tilt Table home test. Sitting I was 92/65 and it dropped to 65/44 after standing 3 min. That was with compression stockings and Mestinon.

I am not sure if Mestinon would help me as my tachycardia is well controlled with Atenolol and you said that Mestinon did nothing for your low BP. I also have chronic low BP and always feel worse after eating. Your BP is about the same as mine sitting but mine does not drop as low as yours does. I can't imagine it being that low or what it must feel like! I am frequently in the 80's/50's but not lower than that.

In desperation for help, I have been trialing Zoloft (an SSRI) @ 50mg/day to see if will raise my bp. I didn't think it would make a difference but for whatever reason, I lately have been getting a few normal bp's recordings which I have NEVER had, even as a teen! This is an insidious illness so it might not be related and I'm afraid to get too excited so that plan for now is to continue with the daily Mestinon , Zoloft, compression clothing and Sudafed.

You need to do whatever is working and helping you to feel better and each of our bodies are so different. Sudafed would give me tachycardia and not something I could ever take and compression stockings did nothing noticeable for me. I had not heard of Zoloft to raise BP so please keep me posted.

I have heard of Droxipoda but have not tried b/c it was not an option with my neurologist.

I had not heard of Droxidopa before my cardiologist mentioned it. I forgot, have you tried Midodrine? I tried to find if I already asked you this earlier in this thread and apologize if I did!

 

[Marco]

It seems that a significant minority of have a tendency to hypertension although that may not be apparent from the normal interpretation of systolic and diastolic BP as per the paper I posted in the following link.

As someone already mentioned, pulse pressure, or the difference between the systolic and diastolic pressure may be more pertinent :

http://forums.phoenixrising.me/inde...ngs-hypertension-how-to-interpret-them.32915/

 

[Marco]

@Jonathan Edwards

I'm not sure that this poll tells you any more than that our blood pressure readings vary as a group but some of the comments may be of interest?