Nausea

[amy1808]

Does anybody else get awful nausea when INR up or down . My IMR very unstable at the moment don't know why doing nothing different . Monday it was 3.5 today 4.8 , thank god for broccoli!! But seriously any tips on the nausea would be appreciated , take ondansetrone for it but it's not great

[Lure2]

Hi Amy,

I have never had nausea from the ups and down of the INR. But i wonder if you are selftesting?

If so, if you are Lupus Anticoagulant, there can be a big difference between the blood-test in the vein at the lab and with the CoaguChek-machine in the finger.

The CoaguChek-value is for me higher than the vein-value. If i have an INR of 3.5 with the machine I can have a vein-value of perhaps 2.7 at the hospital-lab. The vein-value is the number that counts.

We are all different. But if you selftest and is LA positive you have to find out.

Best wishes from Kerstin in Stockholm

[Lure2 in reply to Lure2]

I suggest that the drug you use for nausea (Ondansetrone) could make your INR go up and down especially if you do not take it every day.

I suggest you talk with your Specialist about the nausea. I think that some have nausea as a symptom of HS/APS but do not know how common it is as a symptom.

Kerstin

[amy1808 in reply to Lure2]

Swing pro Hughes team on 26th so should get some decent advice then , please god

[Lure2 in reply to amy1808]

Hi again,

You did not tell me if you are positive to Lupus Anticoagulant? Important to know when on Warfarin as I tried to explain before.

It is not the illness Lupus I talk of but one of the 3 antibodies they take to diagnose HS/APS. I am positive to all three and in high titres all the time.

Good Luck on June 26th!

Kerstin

[Wittycjt]

I didn't have nausea from INR fluctuations/discrepancies but did from the warfarin, itself, when I was taking it. Now on lmwh and no nausea. Best of concerns. I hope it passes for you. Are you sure of pregnancy status?

[amy1808 in reply to Wittycjt]

Most definitely no pregnant 😂

[amy1808]

Lupus anti coagulant

[KellyInTexas Administrator]

Yes. This was my biggest problem, but are you sure it's from the INR fluctuating?

A fluctuation in INR has not caused nausea- but a low INR sure can and that's a conversation I'm very well versed on. Lots of abdominal surgeries.

Let me tell you where I'm going with this.

1. Micro clots to the bowels. I had terrible problems with this. If your INR drops for a bit you could be micro clotting. I would go into ileus. Felt like food poisoning- ( before APS diagnosis.) I would get X-ray- it would show ileus. ( line of depredation in bowel loops- fluid on bottom / air on top) and in surgery I would go. The assumption would be I had an adhesion... so the conclusion post of was non mechanical ileus. But I did it OFTEN. To the point organs were getting sick. Gall bladder failed. ( no stones.) Appendix became chronically inflamed.

The doctors kept saying my body was acting like " mesenteric ischemia" but they were imaging for large clots.

My gastrointestinal doc now says ( post APS diagnosis) it was hypo profusion most likely from lots of micro clots.

2. Another possibility- not as likely as all but with mentioning - neurological / seizures . ( not grand mal; but rather, partial complex )

Can cause nausea. You might not even be aware you are having them... I wasn't.

In fact, we though this was the reason for my abdominal ileus. ( until my APS diagnosis)

So, APS can cause micro clotting to the tiny arteries in the brain, resulting in - most often, temporal lobe seizures- of the partial complex variety. Exactly what I have. You can feel suddenly a little dreamy, space, disorientated to time and place, just for a few seconds. You can feel a little ," detached from the world" for a few seconds." I think of it as a " surreal, floaty feeling."

My neurologist originally diagnosed me with an increasingly rare form of epilepsy called abdominal epilepsy, or also known as autonomic seizures. ( not to be confused with abdominal migraines. Not the same thing.)

All my seizures we stemming from only one place in brain - deep in right temporal lobe - ( over 1000 a day were recorded on EEG but most aborted before they recruited entire pathways.)

All this was in 2012. I was immediacy commenced on anti convulsants. It didn't seem to help the paralytic ileus that much... although it did help some. he though the ileus was called Todds Paralysis- a result of the abdominal seizures.

3. I do have dysautonomia. It also goes along with APS is a number of APS patients. It is an interest of professor Hughes currently. One of the Meds I'm on for dysautonomia between gut and brain is Pamine forte. I take 2.5 mg in the morning and 5 mg in the evening. It works on sending better communication between the brain and gut. ( intestines- smooth muscle cells.) It also has bromide in it- ( it is actually methscopolmine bromide.) Bromide is a very old anticonvulsant. My gastroenterologist prescribes it to me- before APS diagnosis, and before seizure diagnosis. He is the one who figured out there was something not right with brain in the first place - " dysautonomia diagnosis" and sent me to neurologist.

Seizures of any kind come with a post ictal period involving nausea.

However- I am suspicious of micro clots to bowels.

Now I have micro clots to lots of places and large DVT- arm mainly. Three times since November. ( officially diagnosed in November 2016.) I've reclotted twice since then despite being quite aggressively anticoagualed.

I hope that's somewhat helpful. (?)

[Debbweb01]

I'm nauseous everyday of my life! Ondestrone don't work! Compizine better and cheaper but docs like to give the more expensive one so u must ask for compazine it works for me!!! Good luck

[KellyInTexas Administrator in reply to Debbweb01]

Any idea WHY you are nauseated, though? Any thoughts for Amy? Witty said Warfarin caused her tummy to be upset. ( but not sure if it was the fluctuating INR or the warfarin itself.)

Deb, you might benefit from reading my long winded ( sorry) rambling post about my episodes with nausea. I just don't want any one else experiencing the misery and ensuing organ dysfunction and failure/ infections I did from micro clotting into bowels. Also good idea to rule out partial complex temporal lobe seizures. I def had both going on simultaneously- " fun times with APS" I like to say.

[amy1808 in reply to KellyInTexas]

Hi had MRI done on my brain to check for inflamed veins etc and all was clear . I have bouts of nausea but only in the mornings and I'm not pregnant , feels just like morning sickness though 🙁X

[KellyInTexas Administrator in reply to amy1808]

I hope it clears up for you.

[Lure2 in reply to amy1808]

Hi amy,

I have also like KellyinTexas (she knows a lot and have a great experience in the US) had a lot of microclots and the Specialists have never seen any clots on me. Now I have Pulmonell Hypertension and leaking heartvalves and have an INR of 4.0 with all the three antibodies and in high titres all the time. Have had that for 15 years.

Warfarin has always been my best friend.

So even if the MRI and Scans are clear you can have micro-clots.

Kerstin in Stockholm

[KellyInTexas Administrator in reply to Lure2]

Correct. My neurologist sent me to john Hopkins neuro surgery ( prior to APS diagnosis) for evaluation for a surgical removal for the part of my brain where the seizures were stemming from. The EEG was isolaating exactly where they were stemming from- deep in the temporal lobe. The surgery would have been an amygdlahippocampectomy. It would have removed about 6 cubic centimeters of brain tissue. Its not an easy surgery. Before it's preformed the patient undergoes a WADA procedure. If that goes well, the surgery proceeds from there.

Step one the a feathery white milky streak of abnormal cells must be identified on the MRI- confirming " cortical dysplasia ", as this was the original, and most common reason for temporal lobe epilepsy. It gives neuro surgeons the map to know exactly where the misplaced, incorrect cells are to excise. Without confirmation of the abnormal cells on MRI, surgery cannot move forward. ( as it absolutely should be!)

Of course, this place in my brain, could not be detected by MRI. Johns Hopkins concluded I was not a surgical candidate. My neurologist was baffled. With seizurs so strong, why did MRI not show lesion? He really wanted a surgery to cure the seizures, as medicine is not a cure. Only surgery is. ( If cortical cells get stuck in the wrong place in embryonic development ).

Now we know why this milky , feathery line of cortical dysphasia was not found. It was Microclots- which ALSO HAS NOT BEEN DETECTED On MRI as Kersten says, but fortunately my neurologist did his fellowship in London in rare and unusual seizures , so he is comfortable not seeing the hard proof, unlike most practicing American physicians.

[GinaD in reply to KellyInTexas]

I had a couple of temporal lobe seizures back in 1992. Just 2. No more. I avoided bright lights for years, but all has been fine for decades. I always assumed the seizures and APS were not related, but now?????

[KellyInTexas Administrator in reply to GinaD]

Interesting. My neurologist is Dr. Anand Mehendale in Kerrville Texas. ( the town where I actually live!) .

He is probably one of the best physicians on my team that I've work with thus far. He knows how to connect the dots cross disciplines. He doesn't always get it right, but he at least thinks to move in the right directions and start the balls rolling. He is the one who figured out I was having seizures in the first place. I was hesitant to believe him and said ," you're going to have to prove it!"

He said, " well , of course I will- that's what EEG's are for!"

He is veryattuned to what the relationship is between the brain and the auto immune system is. He is sensitive to the SAD diet you are ( out of necessity and intellect) passionate about. ( he is sensitive to it not in depth the way Cleveland clinic or you would be.)

He has been trying for 5 years to figure out the root cause of my auto immune and seizure link/ illness- knowing neurology was a huge player. It was a tragic yet fascinating puzzle to him- and to me as well. He had even done spinal taps!

He was very good at finding other physicians for me- when he was stumped. ( yes- he should have picked up on APS, but he never asked me about OBGYN history.) when I started loosing my balance, dropping things, loosing fine motor skills, loosing vision, he relied heavier on all the other specialists heavier and heavier, yet always seeing me too. ( he got me into neuro Opthomology stat, I already had rheum from MAYO - Scottsdale, and San Antonio, - no one knew, they just knew SOMETHING was terribly wrong. They knew it was autoimmune, ( markers were flagging for UCTD ) and autonomic dysfunction. ( dysautonomia. Multiple abdominal surgeries.

So Dr. Mehendale had those facts plus increasingly worsening symptoms to work with . I first saw him in the spring of 2011 or 2012. He diagnosed seizures first appointment!

( then confirmed with EEG .)

When i told him I flagged for APS, he said, "of course you did. Holy sh*#!"

Yep. That's Dr. Mehendale!

1. I see dr Robin Brey in San Antonio University of Texas Health Science Center. She is a neurologist ( chair) who specializes in neurological aspects of APS. I asked her now that's I'm on an anticoagulant regiment, can I go off of anti convulsants. The answer was no. I also asked, given her particular sub specialization of neurology with this micro focus , does she feel that the particular anticonvulsant I'm on is the best practice for me. Her answer was yes, given the migranious involvement in my case, and most APS patients.

I think, Gina, after having read my brief description of what my seizures can feel like, ( also de ja vu, ) since my neuro is now so familiar with APS and temporal lobe seizures ( again may I remind you how subtle they can be) you might want to seek a consult with him. Private message me, as we have high jacked poor Amy's post quite enough!

[Wittycjt in reply to KellyInTexas]

It was the warfarin causing it because my INR was always between 2-3, not fluctuating and I noticed it after taking the warfarin dose. In fact I too had posted: " anyone have nausea whilst taking warfarin" and the responses were negative to my post then. You can look my original post up for answers then if you are interested🤔

[Debbweb01]

I have several tummy issues! Been operated on 6 times! So I chalk it up to that! I wish I Luck and ur never rambling thx for answering me!

[KellyInTexas Administrator in reply to Debbweb01]

😘

[Debbweb01]

Please try compazine! Much. Heaped than other and works much better for me! Good luck you

[Hughes-Comrade]

For me, compazine works well when zofran does not work.