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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Specific Mast Cell Conditions and Those that Mimic Them >> Being tested for POTS...anyone else have this? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1345050678 Message started by CrystalG on 08/15/12 at 06:11:18

Title: Being tested for POTS...anyone else have this?
Post by CrystalG on 08/15/12 at 06:11:18

So my PCP thinks that I have POTS and she's sending me to a cardiologist to have a test done. Has anyone else had this test done? What is it like? I don't know anything about POTS. She thinks I have it because I faint a lot, am constantly dizzy and nauseas, especially when standing or sitting up, faint in a hot shower or with heat at all, get flush all the time, have stomach pain. Does this sound like POTS?

Title: Re: Being tested for POTS...anyone else have this?
Post by azmusiclover on 08/15/12 at 07:09:03

I have POTS. It sounds like you are having some symptoms. The test isn't too bad. They will do a tilt table, where you are raised up to almost standing and they will monitor your heart rate and blood pressure during the time that you are up. Some tests are 10 minutes, some longer, some shorter if you pass out....

Good luck!

Title: Re: Being tested for POTS...anyone else have this?
Post by DeborahW, Founder on 08/15/12 at 07:21:34

So I am curious...what is POTS? Those who are in anaphylaxis will pass out from triggers such as you mentioned as well, although it is accompanied by other anaphylactic symptoms as well (not just losing consciousness) that generally require emergency care.

Title: Re: Being tested for POTS...anyone else have this?
Post by azmusiclover on 08/15/12 at 08:10:34

POTS- Postural Orthostatic Tachycardia Syndrome. Basically it's a description of what happens with postural changes in an affected person. To have POTS you have to show a blood pressure change, typically drops but not necessarily, and a heart rate that increases over 30pts, upon standing, or sitting to standing, etc.

There are lots of things that seem similar to me. I just know that with my POTS, what I am going through right now feels very different, and it feels in addition to.

Hope that helps!

Title: Re: Being tested for POTS...anyone else have this?
Post by Anaphylaxing on 08/15/12 at 10:22:49

I started with anaphylaxis then had POTS flares on high dose steroids which became constant orthostatic tachycardia and hypotension.

This has improved with time for me be it time, mast cell meds, more exercise, trigger reduction. Keys when I was bad were to eat small meals, drink tons of water and stay on my feet even though my body didn't want to.

They are recognizing a type of POTS that they think is caused by mast cell degranulation hopefully the doc you see is familiar with this. First line treatment is usually same as mast cell treatment some require a few extra meds...

I never had a formal TTT but there is a "poor man's tilt" you can do at home. Let us know how it goes.

Title: Re: Being tested for POTS...anyone else have this?
Post by Lisa on 08/15/12 at 13:12:57

POTS is often a symptom of a MC disorder. In fact there is an article connecting the hypertensive POTs directly to MC activation. This is why many of us with masto find our POTs resolved upon finding stabilization of our masto.

You need to chase the masto doctors, not the POTs doctors. Masto is likely the underlying cause to your POTs. But since masto is known to cause syncope, which is not POTs, then you need to run after masto first since syncope is more serious than just POTs. Both can be debilitating.

Think BIG PICTURE, don´t go off chasing after the little stuff. It will take FOREVER to finally pin down the cause of all that little stuff!! And again, upon dealing with the big picture, much of the little stuff magically comes under control!

LIsa

Title: Re: Being tested for POTS...anyone else have this?
Post by DeborahW, Founder on 08/15/12 at 15:32:06

EXCELLENT ADVICE, Lisa!!

Title: Re: Being tested for POTS...anyone else have this?
Post by Worried Parent on 08/15/12 at 16:13:49

Lisa is right. My daughter has been diagnosed with POTS and we thought that was the end of the diagnosis and the doctors told her she would get better with time. However, she kept getting worse and none of the doctors ever mentioned MCAS. When I finally mentioned it to the POTS "expert" he said it "could be" a mast cell disorder. Unfortunately a lot of the symptoms that my daughter had at first are similar to both POTS and MCAS. It was just within the past 4 months that the MCAS symptoms have become clearer and clearer (hives, etc. that are not symptoms of POTS).

Don't stress about the tilt table test. Its a pretty easy test and that is how they make an official POTS diagnosis.

Good luck!!!!

Pam

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/15/12 at 17:19:45

Hi Crystal.,,, I have Hyperadenergic POTS, the type of POTS associated with Mast Cell Disease. Just as other diseases/disorders have different types, so does POTS. Those of us with Hyperadenergic POTS (H.POTS) may or may not be hypertensive. There is a paper about the connection between H. POTS and Mast Cells: http://hyper.ahajournals.org/content/45/3/385.full

Typically, symptoms of this type of POTS can be seen in childhood, although symptoms may be so mild they are overlooked. Pre-syncopal episodes are very common, but only about 1/3 of ppl actually pass out. Unfortunately, I have been one of the 1/3. Not a pleasant experience.

Personally, I would not neglect either area... POTS or Mast Cells.. since the science is so young in Mast Cells. For example, one thing that helps define H. POTS is high Nor-epinephrine levels. Since Neuropetide Y (a Mast Cell degrangulator) is co-released with Nor-epinephrine, reducing the Nor-epinephrine levels can help with Mast Cell degranulation.

Just another opinion.

Take care, Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/15/12 at 17:36:23

Deborah... It seems those of us with POTS don't usually have the breathing issues that many have, and so 'anaphylaxis' for us is not typical (and overlooked). It seems we are inclined to have cardio-vascular issues instead.

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by CrystalG on 08/17/12 at 01:57:02

Wow thank you all very much for all of the information, this has been so helpful. I guess the difference I am seeing between what my "normal" mast cell disease symptoms and my possibly POTS symptoms are that pretty much everytime I sit up or stand up I feel like I am going to faint or I do faint. I am constantly lightheaded and dizzy and nauseas. But this could also be from all of the meds I am on. I will let everyone know how it goes. I have a consult with a Cardiologist on September 18th and then he will decide if he wants to do the TTT or not. Thank you Lisa for the advice, I am definitely not going to neglect Mast Cell disease either. It makes since that they are related as I never had these symptoms until I started with my symptoms for my mast cell disease. My PCP is finally referring me to Dr. Castells and Dr. Greenberger at Brigham and Women's!!!!! I am so relieved, now just waiting for appointments to be scheduled. Hopefully Dr. Castells will have more insight into the possible POTS as well. Thank you Gail for the article, I will read over that. I am hoping this Cardiologist has some mast cell knowledge, but from my experience I can never assume anything like that. Maybe I will print this article out and bring it to my appt. Some doctors like this, some have too much of an ego to like it. I will let everyone know how it goes. Thank you Pam for reassuring me about the TTT, it sounds like they have to inject you with a stimulant and I am petrified to have any medicine injected for testing since I have had so many severe allergic reactions to Contrast dye.

Title: Re: Being tested for POTS...anyone else have this?
Post by DeborahW, Founder on 08/17/12 at 04:38:24

Gail, I am so glad that you mentioned breathing issues going along with anaphylaxis. This is actually an error that many make in assuming that...even ER docs assume that if there are no breathing issues, then there is no anaphylaxis.

We mast cell disease people can go into anaphylaxis and have NO breathing difficulties or tightness of throat and chest at all! That is the reason that I stumped so many ER docs for years. I was always in fullblown anaphylaxis, but never had any breathing issues. So, this is something that everyone here needs to be aware of.

Crystal, when you mention being dizzy, lightheaded, nauseous, and feeling faint whenever you stand up -- that is exactly how my symptoms were when I first got ill. I was in that state for 4 weeks straight because my mast cells were simply going crazy and wouldn't calm down. Without any meds (since I was undiagnosed), I couldn't get those pesky mast cells to simmer down. I absolutely do not have POTS, yet I had your symptoms. Therefore, I definitely agree with Lisa that mast cells could be your underlying problem.

Title: Re: Being tested for POTS...anyone else have this?
Post by PJP123 on 08/17/12 at 05:14:52

I have to jump in here. I've had the type anaphylaxis you are describing. I've been to the ER 3 times for it and they said you are breathing fine. Last year I was sick and took Amoxicillan Clauvenate (antibiotic) and the next day went back to the doc and said I can't breathe from this med. He said you don't look like someone who can't breathe. Also last year I went to ER for headache for 3 days and got Benadryl drip and starting not being able to breathe. I ripped IV out of my arm because no one took me seriously. Holy crow this infuriates me now knowing this was indeed anaphylaxis.

How's about we start a class action suit against the medical community for lack of care! Yeah!

I believe I have POTS and went to cardiologist for a work up thinking he would diagnose POTS. After he said oh your heart looks fine. I asked if I had POTS and he said oh I don't check for that. So be sure they are testing for POTS and not just a cardio work up. I have Mitral Valve Prolapse and there is a MITRAL VALVE PROLAPSE Syndrome that is Dysautonomia! I bought 2 books on it from AMAZON. I am tired beyond belief. Antihistamines make me worse. I'm not taking any antihistamines right now. Just Zantac and ketotofen eye drops.

I also have autoimmune chronic urticaria.

I'm dizzy often and have tinnitus. Symptoms are so random. Always moving. Always something.

Title: Re: Being tested for POTS...anyone else have this?
Post by CrystalG on 08/17/12 at 05:50:27

Deborah and Lisa I see what you both are saying. It might be my mast cell's going crazy and I am hoping this cardiologist can rule POTS out or give me the diagnosis, either way I am still pursuing the mast cell specialists who I am hoping can help. I have been on several antihistamines, steroids, gastrocrom and other meds for a few months now and still have these awful symptoms that might be POTS or might just be my mast cells. The florinef that is supposed to be keeping water and salt in my body is not working at all which I have been on for months as well. Whatever this faint, dizziness, nausea thing is, it is definitely debilitating. Like the anaphylaxis and joint pain arent enough to deal with. What finally helped these symptoms for everyone? Was it the mast cell meds or another med?

PJ I will make sure the cardiologist is testing for POTS, thank you for that advice.

I am glad you mentioned the lack of breathing issues as well and how the ER says its not anaphylaxis. Although my lungs usually swell when I have the anaphylactic attacks, my tongue takes a while to swell or sometimes doesnt swell at all so when the ambulance gets here and "my breathing sounds fine" I end up in the ER trauma unit 30 mins later because my lungs and sometimes tongue have swollen so bad. I wish we could educate these ER docs and EMT's!!

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/17/12 at 07:25:41

Crystal, you are welcome. I hope the paper helps, and you will find some relief soon.

Deborah, it's all good. I have worked hard to understand the difference between these two disorders...H POTS and MCD ...since I have both. The one thing MCD cannot seem to explain, at this point at least, is the high Nor-epinephrine (NE). And it may be that the high NE is the reason some of us don't have the typical anaphylaxis since one function of NE is to help keep the airway open (relax smooth muscles in the airway).

PJP, if it is any help...I was initially diagnosed with MVP with Dysautonomia. This type of Dysautonomia is now typically H POTS.

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by PJP123 on 08/17/12 at 09:05:34

Thanks Gail,

I don't think I even need to have the tilt test right. I think by virtue of the MVP it's H POTS. Is there anything that helps. I take Vyvanse which is literally speed. It's the only thing that can get me to stand up and move. I think it's counter intuitive in POTS patients but I have 4 kids and have to get up. I still spend most of the time in bed even with Vyvanse. The cardiologist said my heart is good, but when you guys don't see me posting anymore it means I had a rip roaring stroke and I checked out.

Title: Re: Being tested for POTS...anyone else have this?
Post by Doozlygirl on 08/17/12 at 09:24:22

Great thread. The only thing I want to add is that most cardiologists may be unfamiliar with autonomic dysfunction/dysautonomia/POTS, since cardiologists consider themselves the "plumbers", whereas electophysiologists or EP cardiologits are the "electricians" and deal with arrythmias and why the HR or BP may be variable.

A simple poor man's tilt test, also known as orthostatic BPs can demonstrate if there are issues with BP and HR, but A tilt table test (TTT) provides much more information to demonstrate POTS and orthostatic issues. FYI: Electrophysiologists (EPs) tend to give meds during their TTTs where as my autonomic neurologist did not use any meds.

Lyn

Title: Re: Being tested for POTS...anyone else have this?
Post by Doozlygirl on 08/17/12 at 09:27:54

PS. DINET.org is a great resource for autonomic dysfunction/POTS/dysautonomia. Many of us are on both sites, so you will see lots of mast cell information on there too.

Title: Re: Being tested for POTS...anyone else have this?
Post by DeborahW, Founder on 08/17/12 at 09:28:51

Yes, ladies, I don't know how I would figure out if it was POTS or mast cells if I was in that position. It is so frustrating, isn't it?!! Anaphylaxis for me is passing out, body tremors, feeling really cold, diarrhea....fun, huh?

I do hope that you get some answers!!! Hugs!!

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/17/12 at 10:03:32

Deborah, it is frustrating! The researchers just haven't gotten to us as yet. We know now that this particular group of POTS also has Mast Cell problems, but if this is all due to Mast Cells just has not been answered as yet. And the high NE is the sticking point.

PJP, I doubt that anyone would treat you without the testing. : ) Typically, H POTS is treated with either Clonidine or Methyldopa, which reduce NE output. The problem is that these meds are antihypertensives. If you are as I was, then hypertension was NOT an issue. Because of this, Drs who are not familiar with H POTS would never dream of giving you either of those meds.

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by PJP123 on 08/17/12 at 14:41:43

I tried Clonidine and it caused shortness of breath. I do have high blood pressure but only got it say in the last 2 years after taking amphetamines for ADHD. Which in hindsight is really mast cell issues and mitral valve dysautonomia.

I take amlodopine bensylate a calcium channel blocker. It helps with the tachycardia but not the fatigue.

Has anyone tried the support hose?

@MGC do you feel better?

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/17/12 at 19:10:24

PJP, yes I feel better, but I treat both POTS and Mast cells. Adjusting to Clonidine can take awhile.

I am happy to answer questions about how I cope, but don't want to clutter up Crystal's thread. You can PM me if you like.

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by Anaphylaxing on 08/17/12 at 22:16:18

I tried support hose but they made me itch to no end so just worked on my leg muscles and stayed hydrated, lots of rest etc instead. Was in a wheelchair for a time when my BP/tachy was the worst for anything over a short slow distance which really makes me appreciate being upwardly mobile again :)))

Title: Re: Being tested for POTS...anyone else have this?
Post by CrystalG on 08/18/12 at 02:37:06

PJP I have been wearing support hose every day for the past few months. I have not noticed any difference in the dizziness, fainting, lightheadedness and nausea, the only thing I have noticed is that it does help with the swelling in my ankles and the pain i get in my ankles from the swelling. Besides this, I see no benefit.

It sounds like there arent a lot of meds to treat POTS and being put on a high BP med is not a good idea for me either as my BP is usually low.

MGC no worry about writing on my thread, you all have been SO HELPFUL and I love to read the posts as it gives me more insight and education on what might be going on. Thank you everyone for all of your posts on this thread!!

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/18/12 at 15:51:22

Ok, with your approval, Crystal.

PJP, I have not tried support hose. It really is too hot here most of the time.

Crystal, the treatment for POTS really depends on what type one has. Beta Blockers help many, but are not recommended for H POTS... or Mast Cell Diseases for that matter.

My BP was low for a long time. I still took Clonidine. I know it sounds counter-intuitive, but those of us with H POTS just have so many Catecholamines running around in our bodies, the Clonidine just reduces those without touching our BP. BUT.. unless your Dr is aware of this, (s)he would not understand this.

You mentioned fainting. How often do you faint?

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by frugalmama on 08/18/12 at 16:17:19

When I first became acutely symptomatic four years ago, I only noticed symptoms when standing. It took about a year of research (and an episode of mystery diagnosis!) to figure out that I had orthostatic intolerance. As I did more research, we quickly realized I had POTS, as my HR would jump 35-40 BPM within 3-5 minutes of standing...every single time. Oddly, on two of the TTTs that I had, I was completely asymptomatic. Absolutely nothing happened. On the third I had the HR jump, but not all of the other symptoms I typically do (which culminate in blacking out if I don't get horizontal), and it was a very high stress day because I had inadvertently arrived at the wrong hospital for testing. I was floored - how could I be symptomatic all the time, to the point of severe disability, and yet not react on the tilt table?

So, I started to make a mental list of how the TTTs were different than real life. I came up with the fact that at the TTTs: I had to fast, the rooms were ridiculously cold, it was an allergen- free environment, there was absolutely no outside stimuli (darkened room with no talking or movement), and I wasn't standing completely on my own.

I was treated for POTS anyways, but literally saw no improvement with the various meds. Not even a bit of improvement. We were a bit stumped.

It was the DINET forum that first alerted me to MCAS, which I really started studying when I first came across the article linking POTS with flushing to mast cell disease. As I learned more, I realized that I was having lots of these "episodes" when I wasn't standing. And, as I've studied my triggers, my worst ones are....food and food smells, heat, scents, movement/sounds/vibration and any physical exersion. Interesting!

As mentioned previously on this thread, the overlap between symptoms is big. But, I really am starting to think that I don't have POTS, but rather that I experience anaphylaxis triggered by the physical exertion of standing. Why? Because I have the exact same symptoms from standing that I do from eating things I shouldn't, scents, pressure, etc, etc.

As for pressure garments, I couldn't tolerate them at all. I do have significant blood pooling, but the pressure from the stockings put me into anaphylaxis every single time. It took me a while to figure out why I was getting so sick, but it was definitely the pressure :)

Title: Re: Being tested for POTS...anyone else have this?
Post by CrystalG on 08/19/12 at 02:14:17

MGC: Every day varies, but I faint or almost faint 4-8 times a day. Whenever I have been laying down or sitting down for longer than 5-10 minutes, when I go to stand up I either fall right over or I have to sit right back down before I fall right over. So there are only a few times during the day where when I go to stand up or sit up, I can actually do this. Along with this I get nauseas and sometimes flush. I find that if I get right to the floor and lay on my back, I am a little better, but then I have to sit up and then stand up, which is a challenge again. Also if I am in any hot environment at all I get faint, or walking through the mall if there are a lot of scents or people, I get faint. My doctor diagnosed me with Orthostatic hypotension a few months ago, but the issue was that when she did the test for OH, my HR was increasing at a dramatic rate, but my BP wasnt dropping that much to technically have this diagnosis, she just didnt know what else it could possibly be. Shes been treating me with Florinef for my adrenal glands to keep water and salt in my body, but since this has not been helping, she is now thinking maybe its POTS. But like Deborah and Lisa were talking about, maybe its just the Mast Cell Issue and My PCP has never really treated anyone with mast cell isues, so she is trying to find an explanation for the fainting and dizziness and nausea, but maye there is no official explanation besides this is just what happens to us.

Frugalmama: I am thinking that the TTT isn't going to show that it's POTS for me either as if I am not having to stand on my own, i don't know if I will feel faint or not, as its usually when I am standing or sitting on my own. Thank you for posting that as that is interesting.

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/19/12 at 08:56:16

Hi Crystal, maybe it is a Mast Cell issue only. That would make matters less complicated for you. I treat both issues and the treatment for each helps in its own way.

The only sure fire way to know if you have Hyperadrenergic POTS is to have your Norepinephrine level tested. Some centers do that with the TTT.

I will be thinking of you. I hope you will find some improvement soon. I used to have presyncope often, but fainted only occasionally. Not fun I know.

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by lynda51 on 08/19/12 at 19:09:06

Hi Crystal,

It's late so I hope this post makes sense. I apologize for not reading through all the other posts so I hope I am not repeating things you have already heard.

Recently I was hospitalized for a week (only telling you this because of the positive outcome!) with acute sigmoid diverticulitis...it seemed to come out of no where. I am learning we can get ill very quickly if we are not careful to stay " in tune" to our what our bodies are telling us.

I have a backpack with all of my emergency medical information in and my emergency meds as well. I just so happened to have Dr. Greenberger's name in that book because I have been eating the same six foods for over 9 months now and I felt he would be a good resourse to contact if things didn't improve in a hurry. To make a long story short, the hospitalist that was caring for me asked me actually looked through my book and asked me about him. She faxed everything that was going on in the hospital (the nightmare of new and strong antibitotics) and a possible perforation and small blockage. Dr. Greenberger called me twice while I was still in the hospital. I had an appointment with him as week ago Thursday (Aug. 19th). One of the first questions he asked me was if I had ever been tested for POTS. Looking back I think he may have asked me that because many of my "drug" reactions to things like benedryl, H1 blockers, etc. not only involved itching, burning, but also dizziness and fluctuations in BP!!

I had been diagnosed with dysautonomia (mitral valve prolapse and I have regergitation most likely due to 8 rounds of dose dense chemo) but because I had kept my autonomic symptoms under control there was no treatment prescribed. Then in 2010 I started having sever reactions to foods, sitting for prolonged periods of time, walking for short periods of time (I had always walked 4 miles every day). I began reacting more and more to foods....and continued to react until there were only a few things I could eat. I reacted to every medication I put in my mouth as well.

I had a tilt table test done at a rather large clinic done by a cardiologist. They described the test as "normal". When I went back to the autonomic neurologist he said, "you were certainly symptomatic during this procedure" so I think what Lyn said about a cardiologist understanding exactly what she/he is seeing is often times misinterpreted. I think seeing an autonomic neurologist is much better equipped to test you if you have one nearby.

When I was at my appointment with Dr. Greenberger (Brigham Hospital in Boston) he did a "free standing" basic test for POTS. As stated, I laid down for three minutes...pulse was 84 and then stood without holding on to anything. He was looking for a 30 BPM increase within 6 minutes. He was working at his desk and looked up and saw me shaking quite a bit. It wasn't quite three minutes yet. He took my pulse and it was already 124. It had gone up 40 beats in half the time it "should" have. He really emphasized that he and Dr. Castells have been seeing more and more of their mast cell patients with this type of autonomic disorder. As soon as he completed my basic test, he tried to call Dr. Castells so she could see me as well. Unfortunately she was out of town the two days I was there but he allowed me to listen to his dictation to her (and all of my other doctors) to help them understand what was REALLY happening to me. I was soooo tired of hearing "your stressed out....you have an anxiety disorder...". I am sure you have heard it all.

Dr. Greenberger feels that if we get the mast cell disorder under control the POTS will improve and we may have long periods of time where we don't have symptoms. I am working on doubling my cromolyn (gastrocrom) starting with two instead of one at bedtime and then two at lunch and then two more in between. I already feel better. I was able to start cleaning my house today. Something I have not been able to do in almost two years. I can't tell you how wonderful it feels to actually have a "normal day". I didn't feel like I was going to faint. I even made it up and down the stairs a few times!!

As far as your question as to compression hose. I do wear compression hose (they need to be waist high) because of blood pooling in the lower abdomen. I keep them for when I know I will be on my feet for an extended period of time. I have also learned to sit down on the floor in a store when I need to, or go to a dressing room and lay flat and put my legs up on the wall. I also have an amazing therapist who has taught me some simple "bottom crunches and calf crunches...things like crossing your legs, keeping your knees tightly together, putting one of your feet up on a shelf if standing in a line at a grocery store.. It has kept me from being afraid to go out in public. These simple things can make the difference between fainting or not fainting!

The best part of this whole experience (going to the hospital) was that I not only have Dr. Greenberger as a new doctor to contact and he is very accessible through what's called "Patient Gateway" (like My Chart). There I am able to ask questions on a regular basis. But I also am waiting for Dr. Castells to review my case and make suggestions as to where we go from here. It is surely the best of both worlds. I know it is hard to get into Dr. C but going through Dr. Greenberger may just be your "ticket" to getting there a bit faster.

I wish you the best...sorry this is so fragmented...It's almost 1:00 a.m. and I don't think too well this late....I should say, I DON'T THINK WELL ANY TIME OF THE DAY! haaaa

Please feel free to PM me if I can help in any way.

Oh...just a quick question??? Does your body temp correspond to the temperature you are surrounded by? I think I am starting to distinguish between when I start degranulating and am freezing and when it's autonomic because I am in a room that is just a bit too cold for me. tricky, isn't it?? :-X

And yes, DINET is a great website with LOTS of helpful information!'

Take care...there are many caring people on this site and they are really here to get you where you need to go!! I am living proof of that. ;)

I wish you the best. Hugs to you, Lynda

Title: Re: Being tested for POTS...anyone else have this?
Post by lynda51 on 08/19/12 at 19:13:09

Ohhhhh One thing I forgot. Some orthostatic patients go in for IV saline treatments once or twice a week. I know it's not convenient, but it may be something you would like to think about....at least until you are more stable.

We tend to have a terrible time staying hydrated. I drink tons of water every day but had to go to the ER last week for fluids.....not sure where all that "water" goes that we keep pouring into our bodies!! haaaaaaa ;D ;D

Title: Re: Being tested for POTS...anyone else have this?
Post by MGC on 08/20/12 at 07:26:53

How nice, Linda, that you feel better. I do as well, since starting antihistamines and Gastrocrom. These meds can be very helpful. I wish I had known about the MCD years ago!

However, (yeah, sorry, there is a 'However'), after years of medicating my POTS and having been on MC meds for about a year, my Norepinephrine is still high. I mentioned one beneficial action of NE, at least my thoughts on this, but as many other things high NE can also have a down side. The most notable is its ability to cause an arrhythmia. This is the reason I think we with both H POTS and MCD just can't afford to ignore the POTS part of whatever is going on with us.

Take care all.

Gail

Title: Re: Being tested for POTS...anyone else have this?
Post by goldielove on 08/22/12 at 14:40:44

My first dx was pots severe pots but the hyperadnergic type my heart rate went sky high just by standing dr Greenburger is a very smart dr it's really easy to test for pots without a tilt table test I had three tilt tests the first and second ones I was really not well and had a horrible time with them the third one was really easy so it depends on how you are feeling my pots is only bc of the mast cell activation I saw dr grubb and he confirmed I was better off seeing a mast cell md then a cardiologist I still get pots symptoms or ? Mast cell symptoms yesterday I traveled from my home and drove five hours and did a really silly thing stopped at a drive thru and ate a big lunch that was the only meal I had all day when I stopped I was so sick Tachy at 140 and could not walk so dizzy then like my stubborn self walked the dog during this I had taken my reg dose of anti histamines but nothing extra good thing I was actually at a hotel next to an er I got majorly sick took double dose of my anti histamines and an hour later my heart rate was fine I did not take my beta blocker just wanted to see if just anti histamines helped and they sure did I still can't get off my low dose of beta blockers though good luck