Nymph

I wear a cooling scarf on my neck if I am going to be out in the heat. There are some really cute ones. Usually a hat, too. And it sounds counterintuitive, but wearing compression is a must for me. There are some nice leggings at Discount Surgical that are quite cool.

When I saw this new doc the other day, he tested my pupil contraction with a pen light. He then showed me what my pupil was doing in a mirror. Sure enough. I failed the test, as my pupil only contracted slightly and slowly. Yesterday I told my dad, a neurologist, to take a look at my pupil reaction. Totally normal! I checked myself and my pupil was reacting just fine.

To tell the truth, I am not surprised because, with the exception of my jaw/neck pain, my weird tongue, and some fatigue, EVERY single one of my symptoms is episodic and mostly unpredictable. I am very thankful for this because it means I am not often overwhelmed with symptoms. However, it does make it difficult to figure anything out. I guess I'm "lucky" that something observable was showing up for a crucial 1st appointment!

Anyone else have this weirdness?

Hey all,

After seeing Dr. Lichtenberger (NC), I probably have mast cell activation. He says this is secondary to my POTS which is in turn caused by my autoimmune disorder. While I'm not entirely sure about the causal chain he proposes (I think I had mast cell issues before my Sjogren's started, but who's to say when autoimmunity actually "starts"?) - I find his treatment recommendations intriguing.

First, he recommended Sentra PM for sleep issues. It's similar to the Neurolink I already take but has choline which counteracts histamine. He gave me a sample and I've taken it two nights in a row now. I did not fall asleep fast but I seemed to sleep very soundly once asleep, which was great.

His second suggestion is that I try Mestinon. I find that interesting because it's essentially a bid to reduce the inflammation cycle through the autonomic system. If anyone has had success with this I would love to hear about it. I am thinking seriously about trying this because it would also probably help my dryness from Sjogren's. A couple of people on my Sjogren's forum take it with success.

Not on my doctor's suggestion, but on my own I thought about trying daily ranitidine. I know that this is a common approach and it makes sense, even though I don't have regular gastric upset as long as I don't eat gluten. But H2 receptors are also present in the vasculature I find that an encouraging approach. I am concerned about taking it daily long-term, however, as I am at risk for osteoporosis. Does anyone take an H2 blocker just when reacting? For example, my POTS is worse during high pollen. What if I just took ranitidine during that time? 

I already take fexofendine daily, as well as flonase for a few weeks at a time during the worst weeks. I also take quercetin daily.

Please share what has helped you. 

Saw the doctor. He struck me as very knowledgeable and did not flinch when I pulled out my health history/symptom list! After going through the history, he says that my mast cell activation (which he is assuming based on my history - he didn't order any labs) is part of my dysautonomia caused by my autoimmunity. I pressed him a bit for more explanation but he's not the explaining type. 

He gave me a sample of a "medical food" called Sentra PM. In many ways similar to the Neurolink I already take but includes choline, which counteracts histamine. I took some last night and slept really well, so maybe it works. My allergies have been crazy this week.

His other recommendation was Mestinon. I guess that the logic behind that is to increase parasympathetic activity to lower inflammation, stop triggering the mast cells, improve both autonomic function and inflammation. I have been reading about it and it also increases salivary and sweating, which would be good for my Sjogren's. Based on this recommendation, I think that his strategy is to slow down the inflammatory cycle through an increase in parasympathetic activity. Sounds about right to me.

Anybody have experience with this drug?

Katie, are there any good forums or other learning sites for mast cell? I've found mastattack and tmsforacure. Any others you would recommend?

Thank you, Katie! I will check it out. I honestly don't know whether I have mcas or just really bad allergies or how one even sorts out that difference, or if it even matters! Hopefully this article will clear that up or my doc will just be really good.

Hi everyone,

It's been awhile since I've been here. Hope that you're all doing as well as possible.

Ever since I first learned about POTS, I've suspected Mast Cell. I'm finally going to see someone about it. I feel confident about this doc's expertise since he worked on mast cell research at NIH. If this is indeed at the root of things, then it seems that treating it would not only help my POTS but also my Sjogren's. I have been doing decently well lately but when I flare it has been hard to keep up with my teaching internship. In terms of Sjogren's I've been flaring more often then I have since starting Plaquenil almost four years ago. In terms of POTS I have noticed more symptoms since the spring pollen has started. 

I will start my first year of teaching in August so I want to get these as well under control as possible!

Any advice for my mast cell workup? Should I bring along a written summary of my entire life history?

Thanks in advance.

So interesting. I have mild Raynaud's and sometimes it feels really good in the shower. However I have a terrible time blood pooling and I will feel bad later. Same thing for alcohol. Feels good at the time but later on not so much. (And that is just my usual half a drink or so.) But there do seem to be very different types of POTS and what works for one does not work for others. Good luck finding your sweet spot.

I've always been one to catch whatever is going around. For the past year I have been taking probiotics (mixed types, high count), and I have been almost miraculously well. Despite being around lots of kids, I have only gotten fully sick once. I am now a believer!

I can shower but my feet turn to red/purple. When I work I nearly always shower at night or skip a shower in part because I am already a slow-poke in the morning and in part because it will make my POTS worse throughout the day. On the weekends I sometimes shower in the morning but I usually rest a bit afterwards. I guess that means I should change my answer. I could go on with my day most days but that feels like a good time to rest to me! I just bought two cans of dry shampoo. I also keep disposable washcloths handy. My students have asked me what I do to my hair. I didn't tell them that my secret is not washing it more than 2-3 times a week!

Ha! Mike, this is classic.... and the reason I will not see ANY doctor for anything other than a minor infection without patient recommendations first!!! Unbelieveable but so common!

Dear Lindz,

I am so sorry that you are going through this! I cannot imagine what it must be like. I will certainly pray for you - for there to be another answer, for you to be able to enjoy and live in the moment with your family and friends, and for you to have peace in the midst of uncertainty and distress. Also will pray for those around you to know how to best support you during this time.

hugs,

Nicole

Yes! At age 22 I tarted getting motion sickness. I now think it was one of my earliest symptoms. In the car, I take frequent breaks, and suck on Altoids. I do not get nauseous but the Altoids seem to help. I don't play video games, and can't watch any shows that have lots of motion, or just close my eyes for those scenes.

Hi Sylvie,

May I ask what autoimmune disorder you have? I have Sjogren's, which I know is more common in older women (I am now 37 but have had this for at least 8 years) and can cause neuropathy. I know that other AIs can also cause neuropathy. There are a couple of us here with Sjogren's. The good news is that there are many new treatments being tested that show promise for treating AI and if that is the cause of your neuropathy then it would be worth exploring your options.

On hair loss, I find that I usually have a shedding period about a month or so after a flare. My recent sheds have not been as heavy, I believe due to treatment (Plaquenil). I also take biotin regularly and believe that helps. Vit D is very important for autoimmune and I take a slew of other supplements that are specific to my needs.

I am currently pursuing a teaching degree (MAT secondary social studies) and am student teaching. It is challenging. I love it. I am totally exhausted by the time I get home at 4 pm. I think I can do it, but I don't know how long that will last. So I am going into this with the attitude of enjoying it while I can. When I can no longer teach I have a book to write, so I will have something to anticipate! There is a big adjustment time with chronic illness as with any major life change. You will find your way through, I am sure!

Yes, I am the same way.

Katybug, I take it for allergies along with daily fexofenadine. It definitely helps. I use the Puritan Pride brand, 500 mg + C. The ingredients are: Vit C, dimorphandra mollis fruit (quercetin), gelatin, titanium dioxide, vegetable magnesium stearate.

I am taking a combination of 5HTP, GABA, and Tyrosine called Neurolink. Actually, I started that in 2012, before I knew I had POTS. Then I stopped taking it in 2014. About a month later I had POTS symptoms like never before. It took me over a year to realize that it could been stopping the med. I started it again in August and am now feeling really well except for when I get a virus or have a Sjogren's flare, either of which cause my POTS to flare.

That said, it also sounds like you are depressed. Please see someone who is concerned about and will treat both your physical symptoms and your depression. Being depressed is often worse than physical illness so take that seriously, too. Hoping for the best for you.

I would guess that it's probably related to EDS. My mom, sister and I all have some EDS symptoms. My mom has low bp and has fainted with that. She has also had life-long IBS. My sister has NCS, but has only fainted 2-3 times and seems to be ok now. I am the only one with POTS, and mine is on the mild side.

There is something called a vagal nerve pacemaker that stimulates the nerve. I believe they are studying it at Vanderbilt right now. Maybe you could into the study. Otherwise, maybe your neuro would consider this as a possible treatment option?

My guess would be that you have an infection, maybe sinus, and it's making your pots worse. That happens to me. Let us know what you found out at the doctor and please take care of yourself. Glad you asked for help.

Happy for you and for Tyler!

Glad you liked it. As I was searching, I also came across the statement that hypoperfusion of the inner ear can cause vertigo, and of course most of us have hypoperfusion issues, so that could also be a cause. That might be more liekly for me because I have actually been having much fewer migraines than I used to, so I don't know why they would be causing the vertigo.

Hmmm.... My dad (neurologist) said it had something to do with migraine, he thought. I just found this article that explains the association and made sense for my symptoms: http://www.dizziness-and-balance.com/disorders/central/migraine/mav.html

Yes, I have always had some sensitivity which I ahve come to think of as a sensory processing issue. However, very busy visual stimuli or moving visual stimuli will exacerbate vertigo if I'm having a bad day.

Non-celiac gluten sensitivity is a real thing and can have neurological effects. See the Patient Celiac blog (written by MD) for some good starting information. Also, blood screen alone does not rule out celiac. She also has good info on that. Good luck figuring it out.