I'm "me" Again, Clear Thinking, Long Story

[sue1234]

I'm writing this in case I slip back into the POTS-me(which I hope with everything I've got that I won't!)

First, I'm not saying I don't have POTS, it's just there is no way to measure it at the moment.

9 days ago I had a total hip replacement surgery. I was born with hip dysplasia, so was glad I made it into my mid-50s before they are needing replaced. I replaced the only one that's been hurting. I had to get cardiac clearance beforehand, due to my POTS, but as I told the surgeon, as long as I'm laying down when you do the surgery, I don't foresee any problems. After the surgery, the surgeon had told my husband he was a little worried about how my body would act, but apparently everything went well.

I was in the hospital for about 56 hours, then home. I had minimal IVs while in, meaning they were more at a keep-vein-open rate, because they didn't replace the bags more than every 8 hours or so. Also, I drank water/tea freely, but I admit it wasn't my normal amount, as it was painful to get out of the bed to the commode AND my bladder likes to shut down after surgery, so it takes forever to get a little urine out. During surgery they gave me prophylactic IV antibiotics, and then two more doses afterwards. I was given IV meds for pain and then oral pain meds. I didn't even ask what I had in the hospital. I was discharged home with Norco, anti-nausea meds and Xarelto(blood thinner). I made it through the first few days living on pain meds to help me move. Then I was SUPER tired and weak. I looked up my labwork from the hospital pre-surgery(H&H) was good, then for the next two days after I was outright anemic. I emailed the clinic to ask if I could begin iron so I wouldn't be so tired, and they said yes. So, I began 1xday iron pill. At that time I weaned down to 1/2 the painkillers, and then two days ago, to no painkillers. I am usually a lightweight with meds, usually taking about 1/2 dose of regular people. I was sooooo loopy in the head, like out-of-it, so lethargic and weak and so knew I needed everything out of my system.

Yesterday, even though I am still somewhat weak and struggling to maneuver to the bathroom, ect., I said my head feels clear, and I was having thoughts about the usual Easter springtime when my kids were little 20 years or more ago. Today, I feel like my "OLD" self, from 20 years ago. Like, my brain is alert and thinking about all the things I used to do like sew Easter dresses, etc. The "new" me had fallen off into an "automatic" functioning, and then surviving with having POTS for 10 years.

As mentioned, I have no clue if my POTS is changed, gone, still here. I can't stand up long enough to really do anything, and then with the slight anemia, I have to build myself back to functioning. So, I won't know for a while if anything physically has changed like my mental has.

So, I was thinking. The fluids are not the issue, because I was less-than-normal to now my-normal during this last 9 days. I seriously was wondering if maybe I've had a bacterial infection, maybe in my brain or elsewhere, that the 3 doses of IV antibiotics might have cleared up? Kind of like what you see in kids with PANDAS? I don't know yet what antibiotic I was given, as my return appt. is Monday.

Any thoughts on this? I had thyroid surgery 6 years ago, while I had POTS, and did not feel this. I felt good in the hospital, suspecting with the IV fluids, just like this time. I never had IV antibiotics for that. But it didn't hit me a week later with this noticeable change.

This is just a rambling story, but the effect is so strong, and I really wonder if it was deep-seated infection somewhere? I have to say, I have have maybe taken a course of oral antibiotics over the last twenty years maybe 4 times, and usually Amoxil, so nothing major. I'm just never sick(that I realize).

[Katybug]

Interesting, Sue. I had a similar experience when I had my neck surgery two years ago. I did have a lot of iv fluids but I also had the iv antibiotics. I had a slow decline back to significant POTS symptoms after about 3 weeks of feeling quite well. I don't have an answer but I will say, I always feel much better after a round of antibiotics (even oral antibiotics. )

[SarahA33]

So interesting! I just had 2 rounds of IV antibiotics for a bad kidney infection today. I felt like I immediately noticed clarity. Like a fog was lifted or something. It could be a coincidence, as I did start Provigil last week, but the timing is uncanny.

I remembered this post written. (look at the last post written by chaos) http://forums.dinet.org/index.php?/topic/23873-new-to-dinet/page-2

Best of luck to you Sue, I hope you are onto something here. Also, I hope you continue to recover well from your surgery. Sending positive thoughts your way! Sarah

[headhunter]

Incredibly interesting....some day this is all going to make sense to us....someday

[RobinB]

I also feel better on antibiotics.

[dancer65]

I had antibiotics two weeks ago for sinusitis and felt better generally however yesterday I had bad day again rather disappointing !

Sue I wish you a speedy recovery after your operation

[Sylvie33]

Dr. Julian Stewart, a pediatric cardiologist who researches these things, writes about a number of different cytokines ---endogenous inflammatory markers ---associated with dysautonomia. Cytokines are also implicated in "sickness behavior," which is my biggest dysautonomic problem, and also in depression....

So apparently there is something inflammatory going on with us....they just have no idea precisely what or why yet.

Just a bit of an issue that many antibiotics also cause neuropathy!

[RobinB]

Sylvie,

What do you mean by sickness behavior?

Thanks,

Robin

[HopeSprings]

Oh wow, Sue! I can only imagine what it would feel like to have a clear brain and return to "me" again. I totally get what you mean by that. I hope this lasts for you. Keep us posted.

[Sylvie33]

Robin....

Sickness behavior is what healthy people feel when they have the flu...exhausted, seeking to stay in bed, etc. It is also common in autoimmune illnesses...like sarcoidosis, lupus MS, etc. AND it is found with dysautonomia! It also is typical of CFS and fibromyalgia....which is why researchers are looking at the role of cytokines 8n these disorders. I'm really not very clear about the workings of cytokines, so if someone more scientific is reading this please chime in.

[yogini]

Interesting. There are so many variables from your regular routine, so it's really hard to know what's making you feel better.  Have you been laying down a lot more than normal? 

In any case, enjoy each moment of it!  I hope it lasts - let us know how you do in the coming weeks.

[RichGotsPots]

^{some antibiotics antiinflammatory and autoimmune meds..}

 

^{how are you feeling now?}

[sue1234]

Just to update...

I am back to my POTsie self.  It happened kind of like Katybug described above.  I was clear-headed and my old self for about 3 weeks, then started slipping back into my foggy self.  I don't know about the physical part, because I am still building my strength up to walk since surgery.  To answer your question Yogini, I did lie down often for about the first week after surgery, but after that, I was back to sitting upright in my big recliner(not reclining).

It was disappointing to see the clear mind slip away.  The variables that could have brought this about are:

IV antibiotics--is their some underlying, smoldering, undetectable infection?

Blood thinners--I had one blood thinner injection before when I was in the hospital for a 3-day fast checking on blood sugar levels.  Come to think of it, I told my husband when I was discharged that my mind was soooo clear.  But, I chalked that up to fasting.  BUT, I've had two more 3-day fasting tests(no blood thinners for those), and I did not have the mental clarity after those.

Outright anemia--caused me to be so tired, but took iron for a month and ate tons of beef, and the tiredness has resolved.

So, wondering about the blood thinner.  I wonder about "thickened" blood, and if that might be a possibility?  Of course, all having to do with altered fluid status and having to spend everyday to stay hydrated. Any thoughts?

[issie]

The antibiotics and antibiotic like herbals can potentially affect the autoimmune system. Low dose antibiotics for 3 years, for Lyme and other protozoa gave me my life back. Many times of nearly not having POTS. Although still there, my function improved considerably. Until, my latest issue of mold exposure. Working on that now. Starting to have improvement again. 

Issie

[sue1234]

I was re-reading this thread from three years ago, and since then, I have come to a different conclusion as to why I had felt clear-headed.  I thought and thought as to what might be the connection, and I remembered the ONLY other time I went through that feeling was about 6 years earlier when I was in the hospital for three days doing a 72-hour fasting test to find out why I had chronic low blood sugar.  On the first day, they gave me an injection of a blood thinner, because I was going to be lying in bed for those three days.  When I went home, after eating, for about a week I told my husband my head is so clear!  Now, I had to have that 3-day fast two more times, but those did not give me a clear head.  But, those other two times they did NOT give me a blood thinner.  So what I am saying is, the only two times I've had the clear mind feeling, the common denominator was the blood thinners.  My goal this year is to go to a hematologist and present that to him.

 

 

[issie]

We found I have too thick blood.  Instead of blood thinners, I'm using enzymes.  It makes a huge difference.  

[bombsh3ll]

My blood is like treacle, due to plasma volume depletion from polyuria. I tried heparin injections for a while, also tried nattokinase & aspirin but no difference. Be aware that heparin can lower aldosterone production. I don't produce any aldosterone anyway, but if you do, you don't want to lose it.

On the other hand if it got you upright, that may then stimulate the RAAS. I hope you have success if you try it!

B xxx

[sue1234]

Issie:  Hey!  What enzymes are you taking?

B:  I would guess I have somewhat low blood volume also, as I what I take in goes straight through me.  My aldosterone over the years stays lowish, from 1-5.  I've been hearing others have been found to have something autoimmune that tends to cause thicker blood, and offhand cannot remember what it is called.  So kind of wondering if that might be an issue for me.  I'll have to find the name before I head to the doctor in the future.

[issie]

There are genetic things that can cause too thick blood.  I have Factor VIII and Collagen Binding problems and it's still undetermined if I have APS.  I got a positive one time and negative another.

I use Vascuzyme by Empirical Labs in the morning and either serrapeptase or lumberkinase at night.  You have to pay attention if you start brusing bad you are using too much or if cuts dont clot off fast enough.   

I also use herbs that can thin blood occasionally.   

It does seem to help.  I also do better to not vasoconstrict internally.  I use binders when traveling.  

Issie

[p8d]

You might find this video about APS and dys of interest https://vimeo.com/282536351

[sue1234]

Issie, yes APS is what I was thinking of.

p8d, thanks!  I will watch it.