Blood Pressure changes?

[gurs]

Been racking my brain for almost a year now....no answers. I always had low BP and was diagnosed with POTS a few years ago. Was told to eat more salt etc. Then, last August after sinus surgery, woke up and had a nightmare of a time. My body was freezing cold, teeth/jaw clenching for an hour, sweating, and then, the next 2 weeks after were just horrible. So dizzy couldnt stand, mood swings, agitated, extreme heat tolerance..horrible. Went to the doc the next week for post-op check up and my BP was 145/90, which is high for me. He told me it was from surgery and will simmer down..I was concerned so I went to my Cardiologist and my POTS cardio doc who both told me that I had some from of Dysautonomia, and maybe will go away. My POTS doc also told me he didnt think I had POTS now either, which was puzzling?
I know the surgery damaged something in my autonomic nervous system for certain. Funny thing is, after I eat a huge, salty lunch, and nap for an hour, my BP drops much lower to 120-85? it will go up again soon after. Ive been keeping a journal daily to see if I can see what changes might be effecting this too. Sometimes it will go to 160/100, and its always higher in the morning when I first wake?
I got sick with aura migraine and was scared last week so I went to ER. It was 210/110?? doc wanted me to take a BP med, but I told him it would go down soon, which it did. He was amazed. My docs didnt want me on a BP med because the constant flucuations would be   very hard to regulate. My cardio doc told me not to fret unless it was a constant 160/90 etc??
I also felt much better when they gave me some sodium chloride for hydration?

Sorry to ramble..would love to hear some thoughts. Also what is the best BP medication if I need to start taking one?

thanks

Gursie

[Nymph]

Hi Gursie,

You might have transitioned to hyperadrenergic POTS? I have friends in my dysautonomia support group who have wide swings of BP. Not that uncommon. Sounds like you need an autonomic specialist. Some meds to control POTS for just low BP can make this worse. In general, salt would not be the cause.... doesn't cause big changes in BP... just incrementally over time. Definitely autonomic. No, I don't think that you "don't have POTS anymore!"

Nicole

[gurs]

Thanks Nicole..

Yes, agree with you. It doesnt matter what I eat, or do it seems, Ive documented everything in hoping for explanation. But, after reading more about the ANS, I convinced the surgery triggered something. But what can be done? not much. I was scheduled to have rituxan, but had to cancel it because of some dental issues and Im feeling horrible. The allergies seem to be triggering my whole body to flip out. Not sure if Rituxan might calms things down for me, or possibly make things worse. Im so scared of having a stroke too. Ugghhhhhhh, this darn disease is a nightmare. I thought it was bad before, but now, its like Im dealing with MS.

Gursie

[Nymph]

I'm so sorry, Gursie. Keep trying new things. I am hoping that you'll eventually find something helpful. Hugs!

[ohiolady]

Gurs,

I have had this since beginning of Sjogrens.  It is autonomic in nature.  I also have gastroparesis. The first three years my blood pressure would hover, in the evenings, around 70/48.   But this would be followed by bouts of high blood pressure most typically lasting a couple of weeks.  Most recently, I have stopped having the real low pressure. I, also, have elevation in my heart rate. 

The doctor just put me on 2.5 mg of lisinopril to protect my kidney function since I only have one kidney. I am interested to see if this helps with my fluctuations.

Anna

[irish]

The first thing I would do is to call medical records and ask for copy of surgical and anesthesia reports with any medication given during by these both of these departments. If they ask why(which is none of their business but want to avoid rocking the boat) I would just tell them that you have a couple of doctors inquiring into your surgery. They will then send you a form to fill out allowing then to release the information to you.

The reason I suggest this is because of something I went through with my last carpal tunnel surgery. I have myasthenia gravis and am very sensitive to anesthetics. I have had all my surgeries in a big hospital in the cities and they have gotten very good at administering me anesthesia and keeping me from getting too sedated or weak. They even have done one surgery using IV sedatives, etc. and just very minimal anesthesia products.

I had my carpal tunnel surg done in a medium sized hospital with some good docs. However, the anesthesiologists did not listen to me. I told them to keep it very simple and that I did best with versad and fentenol and just a little anesthesia. I woke up and told them that I was awake and heard the surgeon talking and heard the rustle as he put on his gown and the snap of his latex gloves and then I felt the cut in my wrist. Thankfully, that was when I no longer was awake. The doctors treated me like I was crazy. I have gone round with some of these docs from this clinic before and they don't believe my autoimmune diagnosis.

Anyway, my DIL was driving me home when a horrible attack of anxiety hit me. I suffer from depression and I knew I was in for a struggle. I had to get ahold of my psychiatrist and get increase in my meds. It took me one year to get my system settled down and back to my normal dosage schedule.

Then, I soon found out that I was given Profofol or the drug that Michael Jackson was given that pretty much killed him off. I was so mad cause as an RN I understood all the literature and when I saw my ortho for the post op visit I talked with him about this. I asked why they would give an anesthetic that would precipitate depression in a person who was suffering from depression and anxiety for 30 years.
Also, from what I read about that product it is something that should probably be not be used in the elderly. I was about 69 or 70 at the time.

So, I am wondering if there is some anesthesia product or med they gave you to carry out anesthesia and surgery that has kick started some strange reaction. This info may give you a way to investigage this angle. Good luck and keep us updated. Irish

[Nymph]

Gursie, you probably already know about these resources, but Dysautonomia International and dinet.org are great resources and Dinet has a good forum. Also, if you are on FB there is a group called Autoimmune with Autonomic Dysfunction with over 3,000 members, and some interesting info there. I can get you into that group if you like. Just send me a message. What helped me the most was getting involved in a local dysautonomia support group. There is a network of local groups in NC, and I also knew a couple of people in SC already when I moved here. I do not know if similar groups exist elsewhere. It was not easy to find.

[gurs]

Irish, I did receive my surgery records and compared them to the ones I had two years prior(without any problems), but I only could find a few minor differences. It could have been any number of meds, or the way they gave them too me etc. Hard to pinpoint. The anesthesiologist  was not very nice at all..I had a bad feeling. I told her to pull up my medical records from my surgery (then 2 years ago) and use EXACT same things..explained my health issues, POTS etc. She said the computers were down and that they use the STANDARD for sinus surgeries etc. I had a bad feeling about her, and guess what? I was right!!!! They have to understand, we are not STANDARD. God forbid I need to have surgery again. I also have a copy of my sinus surgery done that was done a few years ago with good outcome, and keeping it in my purse. Next time, I will be prepared with copies of my records in hand. They probably wont even look at it. Im really tired of getting judged and looked at like Im crazy mentioning all our health issues. They have no clue. I would love to see them deal with this extreme dysautonomia etc. I dont seem to have a problem with profofol, as I had had it several times in the past. It could have been a different antibiotic they used? to hard to figure out says my rheumy.

Anna, yes, it seems that my BP is staying at 140/90 range now, and not dropping. It could be due to the fact I feel like Im flaring up a storm! I also think Im holding more fluid in my body too.

Nymph, thanks for the info on the DINET..I have checked them out. Great resource!

Gursie

[Deb 27]

Gussie, I am sorry that happened to you after you told them what to do. That is just not acceptable. It's pretty darn scary you can't tell them anything. Are we supposed to write this on our foreheads??? I hope you don't have to get surgery again.

[Blury]

Hi all, I'm new to this form.

I think This is what I'm dealing with right now too, I'm in a state of constant worry because of my BP.  This started happening to me about 4 months ago, I get facial flushing and can't deal with the heat to well, the smallest activity makes me sweat perfusly on my forehead. Just reading about this online looks like something called baroreflex failure syndrome.  I had a tonsillectomy last year and I'm wondering if that caused it.

My blood pressure is about 140 over 90 too. Ive been also getting this Wierd symptom when Im goimg to bed and about to fall asleep it feels like there is something wrong with my breathing, but I know my oxygen level are okay. It's a hard thing for me to explain, it wakes me out of my sleep and some time multiple time through out the night, and I see patterns on the wall for a few a minute while my eyes adjust.


Is there anything people hear have found that helps this?

[gurs]

Blury, my breathing is labored too..but my heart checks out ok.  Its not anxiety either. Im not sure if your menopausal, but hormones can contribute. There is no explanation. I have had extremely low BP for my entire life until the day after surgery almost a year ago. My POTS doctor told me that normally healthy people with snap out of it after a month or so, but with autoimmune, it may never change.
Im going to my rheumy next week, will see what she says. Its just very scary because I get aura migraines etc. I dont want to play around with BP medication either, fearing I might pass out somewhere. Im going to look into changing my diet some and maybe taking some olive leaf extract to see if I can get it lower, but honestly, its this darn dysautonomia that is the cause.

Gursie

[irish]

I just read through your original post at the top of this thread. I am wondering if the docs have ever considered monitoring your sodium and potassium intake and possibly your sodium and potassium output in your urine. The fact that you feel better when you get sodium in some form is interesting though frustrating.

I am wondering if you are having any weakness that is out of the ordinary. Also, have you seen a kidney specialist? The kidneys control so much with electrolytes and other hormones that are involved in the regulation of blood pressure. Also, there is a condition called renal tubular acidosis that can affect weakness, potassium regulation, etc. All of these issues may just be nothing to be concerned about, but there is the fact that autoimmune disease is so hard to figure out.

Also, there are glands that secrete that can affect blood pressure. The thyroid, adrenal glands and the pituitary gland located in the brain. Pays to investigate other things besides the heart cause this stuff is so complicated. Remember that these glands that secrete are very important and doctors often forget about them. Good luck. Irish