Author Topic: Weekly to Bi-Weekly Vomiting Episodes  (Read 2810 times)

oliverid5

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Weekly to Bi-Weekly Vomiting Episodes
« on: December 10, 2014, 11:37:20 AM »
Does anyone suffer from cyclic vomiting episodes?  I am nauseated practically every day, but it seems that every week to 2 weeks I have a day of a huge migraine and throw up 4 to 5 times that day.  My rheumy has no explanation and my nephrologist does not think orthostatic intolerance is causing this.

I've tried cutting out bathroom cleaning sprays (thought that might be the problem) and the only other thing I can think of is when I go out walking for a long period of time and the next day I pay for it with these episodes.  I'm just trying to live a normal life having fun with my family, but my body retaliates.

anita

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #1 on: December 10, 2014, 12:19:54 PM »
Is this happening right after or within a few days after you fluid infusion?  If so, then it may just be TOO MUCH volume giving you the migraine and changing your electrolyte balance...thus making you sick.  Nausea/vomiting from migraines is common, so if you can stop the migraine (or find the cause) then maybe the vomiting will stop.

Electrolytes are in a very delicate balance and pumping all that fluid in may be throwing things out of whack.   Did all this start after you started getting infusions?

Also (and more likely), if you have autonomic dysfunction causing the orthostatic hypotension, then you may also have gastroparesis (another autonomic dysfunction causing a delay in your stomach emptying).  An empty study would confirm/deny this and is a very benign test (eat some contrast laced scrambled eggs and lay on a table for a few hours why they scan/track it's movement).
« Last Edit: December 10, 2014, 01:00:11 PM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

oliverid5

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #2 on: December 10, 2014, 01:36:52 PM »
You are on to something, Anita.  I dismissed that infusion theory because the prescribing doctor said OI would not be the cause and so I assumed the infusion would not be either.  Well, we are going to have a little talk about that because I can't take it anymore.  It is totally debilitating and I am scared to death for when the next attack will come.

Thanks for shedding some light on this!

anita

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #3 on: December 10, 2014, 06:51:49 PM »
You know, there are other treatments for OI...that are new and not used as often.  I'll assume you take Midodrine and Florinef...what doses?  I take 7.5 mg TID of Midodrine (but have been up to 10 mg TID) and I now take .1mg of Florinef (have been up to .2 mg, but due to Cushings, we dropped it back down).

During times that I was having severe problems we tried a medication called Mestinon that is used for Myasthenia Gravis that has been used in severe cases of OI/POTS as it affects the parasympathetic nervous system and with contractions, can help increase BP when standing.  The Mayo Clinic was the first to use this and now other doctors are trying it.

I was unable to continue it as it caused profound asthma (which I already have) attacks within 30 minutes of taking the med..a rare reaction (but i always have rare reactions--lol).  But it may be something you can try.

It may not be something a doctor would advise (although mine knows I use it), but decongestants increase BP.  I don't take any other then the lowest dose OTC and it does help (not perfect but with other meds it can get me out of a bind for the short term).  If you remember, ALL decongestant have warnings for those on BP medication...that is because it RAISES BP!!  Just a little trick I found out after taking decongestants for repeated sinus infections.

Currently, we are increasing my IVIG to treat both my autonomic & peripheral neuropathy (in hopes of stopping progression of the autonomic and reduce pain and symptoms of the PN).  They don't believe it will reverse damage already done on the AN, but if we can halt any further damage, that would be great.  Just another option you may consider.

Do you have any other autonomic dysfunctions...like temperature regulation, difficulty initiating urination, etc? 
« Last Edit: December 10, 2014, 06:55:46 PM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

anita

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #4 on: December 10, 2014, 09:14:55 PM »
Sorry to keep adding on and on to this, but you may also find that your OI symptoms are compounded by your medications...namely, the Evoxac.  It clearly states in side effects (top of the list) that it can cause dizziness, fainting (that means drop in BP) when getting up from sitting or laying position.

drugs.com/sfx/evoxac-side-effects.html

This info (and the other post) may be helpful if you end up thinking the fluid infusion is causing the migraines/electrolyte imbalance...setting the vomiting into motion.  But it also may provide you with different ways to approach your OI treatment overall and reduce your symptoms by adjusting your meds...maybe increase the midodrine & florinef (based upon what you currently take) and stop the evoxac (for a while to see if it iS compounding your symptoms).  So, you may be able to stop the infusions all together, which might stop your migraines, and get your life back!!

Just a thought.

One of my doctors suggested the saline infusions for me many years ago when things were bad...but other doctors involved in my care, said NO WAY...due to all the negative that comes from electrolyte imbalance...throwing off potassium, sodium, and other VERY important components.  So we have always stuck with medication and lifestyle changes to treat...and my AN is quite severe and at the point (after 18 years) of having times where I literally cannot maintain an upright position.  I can have BP drops down to 60/38 in 30-60 seconds.  But I've learned how to manage it and tricks to keep it up in emergent situations where there is no place to sit or lay down.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

oliverid5

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #5 on: December 11, 2014, 10:02:40 AM »
I take midodrine 10 mg one-half hour before I get up in the morning (still lying flat in bed) and Florinef 0.1 mg in the morning.  I drink 3 Liters of water a day and add salt to everything I can.  My doctor actually said Romen noodles were loaded with sodium and would be a good thing to eat, but I like to stick with healthier options.

I honestly do not know what he is going to do with me at the next appointment.  I will print the suggestions you gave me.  He is supposed to be an expert in OI and raves that doctors from all around the country call him to get advice for their patients with OI/POTS.  He did suggest compression stockings.  Haven't tried that yet.

My BP is normal in the mornings when I sit and take it, but my pulse raises at least 20 to 30 bpm when I stand up while my BP may drop 20 - 30 mmHg.  In the afternoon and evening my BP will be between 140-155/89-90 sitting and standing and my pulse only raises about 10 to 20 bpm.  I was told not too worry about the high BPs because I need that to help keep my pulse from raising too high.  What good is that when my biggest pulse problem is the mornings and my BP is high at other times of the day?  I really am concerned about the high BP, but my doc isn't.

anita

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #6 on: December 11, 2014, 10:21:12 AM »
You only take Midodrine ONCE a day??  It only lasts about 3-4 hours...what are you supposed to do the rest of the day?  I take it 3 times a day to cover the whole day.  I also split my Florinef to twice a day for same reason.

The high BP should be somewhat concerning.  You'd likely be better off with a lower dose of Midodrine (like 5 or 7.5) but take it three times a day for better coverage.  That might lower those high rates, yet give you better coverage when you stand.

I have had this for 18+ years and have seen the experts at Mayo, Hopkins (currently), and Dallas.  You'd likely do better with more steady coverage over the course of the day vs your once a day regimen.  I too use tons of salt and drink a lot of water, but you can get TOO much water and alter the electrolyte balance (what we were talking about before).  I have never heard of someone taking Midodrine just once a day...maybe he would consider spreading it out.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

kikil

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #7 on: December 11, 2014, 11:48:57 AM »
I do!

anita

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #8 on: December 11, 2014, 12:24:55 PM »
Kikil,

Is the "I do" in reference to Midodrine?  If so, are you taking it for POTS or OH (I don't see it listed in your signature line).  Do you have a severe case?  What dose do you take?

Maybe you were referencing something completely different. I'd be interested in hearing your experience/story about your OH/POTS.  Here is info on Midodrine...which is a fast acting, but SHORT lasting medication, so would NOT be effective after a few hours of taking it. 

From Drugs.com on Midodrine/Proamatine:

"After oral administration, midodrine is rapidly absorbed. The plasma levels of the prodrug peak after about half an hour, and decline with a half-life of approximately 25 minutes, while the metabolite reaches peak blood concentrations about 1 to 2 hours after a dose of midodrine and has a half-life of about 3 to 4 hours. The absolute bioavailability of midodrine (measured as desglymidodrine) is 93%."

The one thing that is crucial to remember is that Midodrine should NOT be taking in the evening hours as it can cause high BP when laying down.  So most doctors recommend not taking it within 4-5 hours of bedtime.

It is NOT a medication used lightly...but a smaller dosage over 2-3 times a day might work better for oliverid5's severe case, than a large dose once and then it's no longer in the system by mid/late morning for the rest of the day.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

oliverid5

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #9 on: December 12, 2014, 09:31:14 AM »
Anita, what specialty treats your OI?  I have a nephrologist at VCU/MCV who specializes in blood pressure disorders.  Maybe a cardiologist would be better?!?

anita

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Re: Weekly to Bi-Weekly Vomiting Episodes
« Reply #10 on: December 12, 2014, 07:21:12 PM »
I have a cardiologist but the neurologist does most of the managing at this point (one that specializes in autonomic neuropathy)...as it is a neuro condition.  But it affects cardio systems, so cardiologist has his input as well.

That's interesting...I never heard of a kidney doctor managing BP.  I have nephrogenic Diabetes Insipidus (nothing to do with sugar, but it affects fluids) and the nephrologist won't have anything to do with my autonomic dysfunctions.  He ONLY has input on my DI.

Can I ask how that came about?  What brought you to a kidney doctor for BP?  If it was just about your fluids, have they checked you for DI?  Do you urinate an overly large amount (even when NOT drinking a lot)?  Do they think this is somehow related to your kidneys...if so, the only thing that could be is DI.  Have they ever mentioned it?

You absolutely need a consult with cardio and/or neuro (both would be best)...just for another opinion.  Your OH seems severe and yet your medication won't last past mid morning.

**Keep in mind that my dysautonomia goes way beyond OH or NMH (neurally mediated hypotension---what both doctor prefer to call it).  I have a pacemaker (had since 2004) for low heart rates (into 30's bpm) but I also get high rates in excess of 200 bpm.  Then there is the GI related problems from dysautonomia...the gastroparesis, SIBO, both causing periods of malnutrition and weight loss...and many times my meds don't absorb and that can get bad!!.  The minimal stuff is temp regulation, balance, livedo reticularis, double vision...there is NO treatment for these, just accept them.

This is why I asked you if you have other autonomic symptoms?  There are other factors that be play a role in your BP and I wonder if they have looked at the entire picture for you.  I'd really be interested in hearing your story, if you would share it.  I'm not sure if I'd be able to offer any help from my experience...but sadly, I have a LOT of experience.  And your BP rates sound very much like mine.  I just saw my neuro (the autonomic one) last month and he does orthostatic BP in the office and I dropped 33 systolic points after standing...WITH medication on board...but it was toward the end of it's effectiveness.   My BP can (and has done so many times) drop to 62/38 within 1-2 minutes of standing.  I literally have to sit on the floor right there and get my feet up to get blood to my head before I pass out. 

There are tricks to keeping it up and I have learned them all.  Right now I am struggling with a flare of my dysautonomia (all aspects) and the severe gastroparesis not only keeps food from emptying, but it also keep food and nutrients from being absorbed...including my BP meds, so they are not working as well or at all (at times). 
« Last Edit: December 12, 2014, 08:50:28 PM by anita »
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran