Medications for Mast Cell, POTS, Chiari, etc.

[Megan]

Hi,
This past year I was diagnosed with Chiari 1 Malformation, Mast Cell Activation Disorder, EDS Hypermobile Type, and Autonomic Dysfunction/Orthostatic Hypotension. I finally feel I am on the right road to recovery with the correct diagnoses, however I feel lost in terms of my medications and what I should and should not be on. I’ve read the Driscoll Theory Part 2 (THANK YOU DR. DIANA), and from what I understand traditional medication may not help POTS/autonomic dysfunction/hypotension long term. I have been struggling a great deal with autonomic issues/mast cell issues the past 4 months, and have significantly more allergic reactions and synocopal episodes with my combination of medications. I could use any insight on medications.

I changed many medications in December upon recommendations of my endocrinologist (who is actually familiar with EDS). I went off armour thyroid and lexapro in order for my body to be at a baseline. I have also changed birth controls a couple of times, from lo-estrogen birth control to progesterone to higher estrogen birth control. I am no longer on a thyroid medication, however my thyroid has fluctuated in and out of range over the years (typically low). My current medications include:

Zantac, Allegra, Singulair (h1 and h2 blockers for the mast cell)
Florinef and Midodrine for the autonomic dysfunction/hypotension
Generess birth control (higher estrogen and lower progesterone)

I am concerned this combination of medications has caused me to be much worse the past few months, but can’t figure it out.

1. What is the best birth control to be on to help with mast cell activation disorder? Is a high estrogen birth control better for the Mast Cell Activation Disorder?
2. Does a higher estrogen birth control (and lower progesterone) help with joint subluxations?
3. Could Florinef and Midodrine be making the Mast Cell Activation Disorder worse?
Should I go off the florinef and Midodrine and go on Diamox instead?
4. Do I need to be on hypotension medications if the Mast Cell is under control with diamox and h1 and h2 blockers?

Any thoughts, insight, help would be very much appreciated. 🙂

[MattiesMom]

I am brand new to all of this, so surely I am not the one to give answers (I have been diagnosed with POTS, my sister and niece were diagnosed with HEDS, and I am beyond sure my daughter and myself have HEDS as well, we go to the geneticist April 16th, and I have figured out there seems to be MCAD as well, self treating so far)… But from reading above, are you on Diamox yet? And my second question, could your chiari actually be external communicating hydrocephalus pushing your brain downwards- causing the chiari? Personally, I have been having a hard time adjusting to Diamox, brand new- on day 3… But yesterday, after watching the newest video about external communicating hydrocephalus, I got brave and took a whole 125mg of Diamox last night (it makes me very sleepy and loopy)… and once I forced myself out of bed this morning, was amazed at the lack of headache and nausea and mental clarity, short lived though, because I have to pick my daughter up from school and haven’t adjusted to the side effects of Diamox so can’t take the proper dose and function. (I have not had a recent brain scan of any type, and I do not have a chiari malformation diagnosis). But in that recent video, Dr. Diana says that florinef made her worse when she was initially put on it for her POTS. Just my thoughts and questions, and sorry I am not very knowledgable. Hopefully someone with more knowledge will chime in.

P.S. When my doctors still had no clue what was going on with me, my naturopath checked my hormones that were really wacky. She experimented with me on bio-identical hormone replacement and my symptoms were getting worse. For now, I am staying off all hormone treatments.

[ourfullhouse]

MattiesMom,
That is very interesting what you wrote there at about hormones. My Dr.(a naturopath) has tested my hormones again and again (24 hour urine tests, pricy!) and they are always whacky and he keeps having me try bioidentical compounded hormones in different combination and amounts (they are in a cream) and they never do anything!

Then I found some great info about perimenopause on http://www.cemcor.ubc.ca/ and my symptoms sure match up with low progesterone/high estrogen. My doctor agreed to let me try the medroxyprogesterone at the dose recommended for women with migraines, which is a HIGH dose and take it every day, not just the 2 weeks a month. Anyway, tried it and it did help with some things (finally relief from breast pain and swelling!) but I bled for a month straight. This is what happens when I have tried birth control pills a couple of years ago too. Something is very broken in my hormones because the amount of medroxyprogesterone I was on was more than enough to SHUT off the ovaries and menstruation, and yet it didn’t with me.

It just seems every time we try to do something with my hormones it never works out. I would be so very happy if that piece of this, if it is the vagal nerve, etc. would be worked out and get fixed in those of us that have this “endocrinology gone wild” problem.

[ourfullhouse]

Megan,
I also had worse and more headaches while on Florineff! When my POTS was at its worst and my doctor kept increasing my Florineff, I went from 10 headaches/migraines a month, to 25 a month! The Florineff seemed to help the tachycardia and dizziness, but at what a cost!

Switching to Diamox made a HUGE difference, though I was very nervous that I would have a lot of tachycardia and dizziness while my body adjusted (and I really did NOT want to end up in the ER yet again with my POTS). Dr. Diana was so sweet to hold my cyber hand through it, encouraging me to hang in there and give the Diamox a chance, that even some increased symptoms at first would go away, etc. And, she was right! It is rare I get a headache anymore and if I do I take an extra Diamox and it goes away in less than an hour. Before, nothing would get rid of the headaches I got before or while on Florineff (sometimes Excedrin would help, but not always and not completely)! My tachycardia/dizziness are so much improved! They only crop up if I get too acidic, and I have had to learn and work with that issue, but I think I finally have it nailed down. It is amazing for me to be able to bend down now and do some gardening and then stand up without falling over/passing out, etc.!

Diamox really can make a huge difference, so give it a fair trial, even if some symptoms crop up the first few days or so. Give your body time to adjust to the new normal. It can take some time to find the right dose too, so be aware of that. And, also be aware that there are some meds that interfere with and/or are bad in combination with Diamox (such as aspirin, lisinopril, etc. Be sure to read up on it!), which can cause you to have problems if you aren’t aware some meds don’t “mix”.

Lastly, be sure to get regular blood work done to watch how your body adjusts to Diamox as it is KNOWN to make people too acidic (which is why I take bicarb when I take Diamox). I found that being too acidic started to mimic POTS symptoms, but once I got the PH balanced, the symptoms went away. Now, if I start to notice some tachycardia I pop some extra bicarb tablets right away. =)

[Megan]

Thanks for the replies 🙂

I stopped my dosage of florinef and my headaches do seem much better….my racing heart is not though. I am wondering still about my hormone levels, thyroid, and adrenals and what role they play in all of this. I can’t seem to find a doctor who will do a hormone panel on me. I go to one of my doctors tomorrow and will talk to her about it again. I have found a wonderful allergist at Rush (In Chicago) that specializes in Mast Cell issues. She is reading Dr. Diana’s theory part 2 before my next visit to her.

Thanks for your replies,
Megan 🙂

[Dr. Diana]

Hi,
This past year I was diagnosed with Chiari 1 Malformation, Mast Cell Activation Disorder, EDS Hypermobile Type, and Autonomic Dysfunction/Orthostatic Hypotension. I finally feel I am on the right road to recovery with the correct diagnoses, however I feel lost in terms of my medications and what I should and should not be on. I’ve read the Driscoll Theory Part 2 (THANK YOU DR. DIANA), and from what I understand traditional medication may not help POTS/autonomic dysfunction/hypotension long term. I have been struggling a great deal with autonomic issues/mast cell issues the past 4 months, and have significantly more allergic reactions and synocopal episodes with my combination of medications. I could use any insight on medications.

I changed many medications in December upon recommendations of my endocrinologist (who is actually familiar with EDS). I went off armour thyroid and lexapro in order for my body to be at a baseline. I have also changed birth controls a couple of times, from lo-estrogen birth control to progesterone to higher estrogen birth control. I am no longer on a thyroid medication, however my thyroid has fluctuated in and out of range over the years (typically low). My current medications include:

Zantac, Allegra, Singulair (h1 and h2 blockers for the mast cell)
Florinef and Midodrine for the autonomic dysfunction/hypotension
Generess birth control (higher estrogen and lower progesterone)

I am concerned this combination of medications has caused me to be much worse the past few months, but can’t figure it out.

1. What is the best birth control to be on to help with mast cell activation disorder? Is a high estrogen birth control better for the Mast Cell Activation Disorder?
2. Does a higher estrogen birth control (and lower progesterone) help with joint subluxations?
3. Could Florinef and Midodrine be making the Mast Cell Activation Disorder worse?
Should I go off the florinef and Midodrine and go on Diamox instead?
4. Do I need to be on hypotension medications if the Mast Cell is under control with diamox and h1 and h2 blockers?

Any thoughts, insight, help would be very much appreciated. 🙂

Hi! You have gotten some excellent advice already, I think I’m becoming unnecessary! I’ll throw out a couple of thoughts, though. First, singulair can do some funky stuff to some people, making some of their symptoms much WORSE! I would love to see you on a mast cell stabilizer (Cromolyn sodium would be great). You may want to go OFF of Singulair for a while (work with your doctor on this, of course), but a great number of patients I talk to, get some horrifying symptoms with it. I SWEAR I wouldn’t be here without Cromolyn (and I have a video on how to have it made at a decent cost).
Did you see the section on “Endocrinology Gone Wild” in Part 2? If we have pressure on our vagus nerve, the hypothalamus doesn’t receive or SEND the proper signals, so endocrinologists can be VERY puzzled (mine said my panels were “impossible”. ha.) I’m working hard on researching work-arounds for the vagus nerve issue (and TRYING THINGS ON MYSELF, to be the canary in the coal mine for you before we start the official trials. 🙂

Meanwhile, estrogen is neuroprotective (good), but there are receptors on our dura that respond to estrogen, which is why many researchers think women have more migraines than men (bad). Personally, a very low dose estrogen pill stopped my periods, but EVERYONE IS DIFFERENT. Too bad, isn’t it? Life sure would be simpler, but much more boring, if we were all the same!

I would CERTAINLY try stopping the Florinef, as it will increase intracranial pressure (which I believe is triggering our mast cells. Remember, we are trying to hit the CAUSE of the dysautonomia, not just the symptoms… You may still need Midodrine, but I’d (AS ALWAYS), chat with your doctor about that.

Diamox is also an old anti-hypertensive drug, so that may be all you need to keep the BP from spiking (and it will prevent most glaucoma) and that may settle down, but please keep an eye on it, OK? Histamine from mast cells can drop BP, hence the advice for Cromolyn. It take a few weeks before you notice the difference, so stick with it, OK? A few weeks after starting Cromolyn, I noticed my orthostatic intolerance was greatly improved.

Please work with your doctor on all of this, and I think most of us will agree. We had to fiddle a fair amount with dosages before we finally settled in on what worked the best for us as individuals. I hope this helps! Big hug, Diana

[Dr. Diana]

Thanks for the replies 🙂

I stopped my dosage of florinef and my headaches do seem much better….my racing heart is not though. I am wondering still about my hormone levels, thyroid, and adrenals and what role they play in all of this. I can’t seem to find a doctor who will do a hormone panel on me. I go to one of my doctors tomorrow and will talk to her about it again. I have found a wonderful allergist at Rush (In Chicago) that specializes in Mast Cell issues. She is reading Dr. Diana’s theory part 2 before my next visit to her.

Thanks for your replies,
Megan 🙂

Great thoughts Megan! If your doctor works out well, would you mind adding the doctor’s name to our thread of good docs? We NEED more doctors who aren’t afraid of us! (Anybody been there?) 🙂

[Megan]

Thank you to everyone and Dr. Diana for always listening!

Update: I stopped florinef and low and behold my headaches have much improved! I also went off Singulair….my mom had actually noticed my moods drastically changing when I was on it, but at first I didn’t attribute it to the singulair. I had higher levels of anxiety, emotional instability (i.e. feeling like crying for no reason). Even my dreams were very vivid and unpleasant! I am happy to be off of it.

I’m planning to talk to my allergist/immunologist about a LOT Of things. I actually put together a chart listing out my cortisol levels, ACTH, and thyroid levels over the years to give to my doctor. I think it’s important to take a history of what has been going on, instead of just looking at one number in the present. My ACTH, cortisol, and thyroid have been doing some very funny things!

Next steps: mast cell stabilizer, possibly switching allegra to zyrtec, addressing thyroid/adrenals, hormone levels/birth control.

Thank you so much for all of the insight and help!!!! 🙂

[SweetFeather]

Thank you to everyone and Dr. Diana for always listening!

I also went off Singulair….my mom had actually noticed my moods drastically changing when I was on it, but at first I didn’t attribute it to the singulair. I had higher levels of anxiety, emotional instability (i.e. feeling like crying for no reason). Even my dreams were very vivid and unpleasant! I am happy to be off of it.

Megan, I reacted poorly to Singulair too.
…….. I was a raving biotch on it. It was like BAD PMS. I was so cranky and impatient with my kids. In one word I was extremely “irritable.” I didn’t even like being with myself when I was on it and I couldn’t do that to my hubby and my kids! My allergist and primary were surprised I reacted that way.

Florinef gave me a nearly constant headache which felt like a giant hand was slowly squeezing my brain. I immediately gained back fifteen of the pounds back that I’d lost with my first bad POTS episodes.

My cardiologist put me on propanolol and midodrine when I was first diagnosed with POTS but the beta blocker had my blood pressure so low I thought I wouldn’t wake up in the morning and I started having really bad anxiety episodes. Like crawling up the wall! My doc tested me for a pheo and my urinary and plasma tests showed grossly elevated metanephrines. (10 times normal and 4 times is considered virtually 100 percent for a pheo.) So I had scan after scan after scan…. no pheo. Went off the betablocker and midodrine and metanephrines returned to normal. My endocrinologist said I was lucky I hadn’t had a “catastrophic heart event” at those levels. So if you are feeling worse and you have anxiety symptoms (I didn’t have high blood pressure with it like most pheos but my other symptoms sounded like a pheo) … ask about having your catecholamines tested… I wish she’d checked my methylhistamine and tryptase at that time. I have lab orders for those two tests if I have an “episode” but haven’t had one since being on the mast cell protocol. 😉

Best of luck with your docs and with getting your meds figured out.
SweetFeather

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