brethor9

I think at this point I will just see how things go regular access until the dr decides how much we are getting out of the treatments. I don't want to go through the hassle of getting a PICC or a Port just to find out the infusions arent worth it. I used to work in a Cancer Clinic and I have seen the upsides and downsides to the PICCs and Ports.......

Bren

Hi Naomi!

He wrote orders on a script to be taken to my local emerg or the outpatient clinic for 2 litres saline infusion biweekly......he said they will probably want him to fill out more forms but this would get the ball rolling he said its the only way to help the chronic dehydration since my body cannot do it on its own even with meds....I am hoping it makes an impact

Hi All

Wow I think I am sooo lucky to have my POTS specialist! Went to my follow up yesterday and he actually asked me if he could treat me with bi-weekly saline infusions to help with my chronic dehydration issues. I was completely speechless considering we had discussed this topic on the forum recently saying how we wished dr's would do this. He said that he has 1 other patient he started doing this with and has seen good improvement and wants to try it with me now. (He said in some of us our thirst sensors are broken and need to be retaught and hopefully IV infusions will rewire the signal)

I of course said yes please LOL! no fuss no begging...its done! I hope his open mindedness will start to rub off on other dr's treating us and soon we will all be getting some saline

Bren

Hi All

So I am back from a very discouraging appointment with a specialist whom I thought was well versed in MCAD; apparently not Since my tryptase levels came back normal and do not therefore show mastocytosis he has deemed all of my symptoms are POTS related......in my previous appointment he diagnosed me with several forms of urticaria, dermographatism, flushing, itching, little red/brown spots appearing out of nowhere, severe bone and muscle pain etc. I dont understand why he is choosing to ignore all the clinical symptoms and relying on blood test that is only 75% accurate.....even my auto specialist believes there is a connection but doesnt know how to treat it.

My question to the masties?.....am I abnormal in thinking that you can have a normal tryptase but still have MCAD with possible skin involvement?

Bren

LOL Corina! I love Peter Gabriel too! Hard to pic a fave song....probabaly Carpet Crawlers when he was with Genesis oh boy am I showing my age!!

Bren

The Prodigy

Nine Inch Nails

U2

Peter Gabriel

I like a wide variety of music! anything that has a great beat and feel to it

Me too! I agree with Anna, I think it is related to too much adrenaline

Bren

I found this exerpt from one of Dr Julian Stewart's articles explaining chronic OI and POTS;

Orthostatic intolerance is common but often misunderstood. Investigation of the condition is an evolving field of integrative physiologic study. Acute orthostatic intolerance is characterized by simple faint. Despite its ubiquity, scientists do not yet understand why particular people faint. Chronic orthostatic intolerance, characterized by postural tachycardia syndrome (POTS), has been demonstrated in adolescents and some adults. POTS, however, remains a heterogeneous entity, likely of varied etiologies. Until better understanding is achieved, treatment remains more guesswork than science. So I think Dysautonomia is the umbrella, followed by categories like OI and subcategories such as POTS, MCAD, etc....just my opinion

for my diagnosis I am termed severe Orthostatic Intolerance accompanied by mild POTS and moderate autonomic dysfunction; clear as mud

Hi

Thats great that you have had such great luck with the exercise! Perhaps why so many people are doubtful is there are a lot of us who were very athletic and active when we came down with this condition, including me.....I used to work out 2 hrs every day and ran almost 2 miles....but still came down with POTS so not exercising was not the cause of my deconditioning. In fact I just found out that I suffer exercise induced urticaria which can cause anaphylactic shock..so I have to be very careful ..... I think it is good for all of us to remember that POTS is a syndrome and that there are many underlying factors that can contribute to it....deconditioning is just one of many. We all need to remember that what works for one patient may not work for another and every background is different but to always be respectful of others experiences keep up your hard work and I hope you stay healthy

Bren

Hi Dani

I have been having the exact same problem for a couple weeks now (started out of the blue)....I am getting the flutters/ skipped beats every couple minutes along with lightheadedness and sweating.....had Holter done and my auto doc stuck me on a beta blocker which seems to be helping a bit along with extra magnesium but they are still occurring too much for my liking hang in there...but it doesnt hurt to get it checked just to put your mind at ease

Bren

Thanks Issie I admit I am really getting to the end of my rope with all these symptoms.....I just keep telling myself sooner or later something has to work! and it will settle down...but its hard! Hopefully the specialists next week will have some decent input rather than just patting me on the head and sending me away with words of comfort but no course of action...I will keep you all posted...

Bren

Hi Julie!

Thanks for your input as always I suspect thats what is going on also......every time I take a dose about 20 mins later I am heat flushing like crazy it also congests me like crazy and drys me out....my chest feels like I am breathing through dry smoke.....its horrible and the pain in my veins drives me nuts!! The doc made me go on it because I am having really bad runs of skipping beats and abnormal rythmn....I have been taking magnesium and it is helping a bit. I started the Doxepin but couldnt tolerate it and it seemed to make the heart stuff worse as do all the antihistamines. For some reason I am just super sensitive to the antihistamines....sigh...frustrating. I see the mast cell specialist on Feb 28th for the tryptase results and to have the biopsy done so I will discuss with him then. Its so hard because the meds never line up with each other they always just end up aggravating the other condition. I suspect like you suggest a mast cell stabalizer may be the only thing that will help at this point. I just wanted to know if it was possible to have effects like the heat flushes from the Beta Blocker....we can never be normal can we? Hope all is well with you!!

Bren

Sue- I totally agree with you! The medical establishment really needs to get on the ball and do more research on female hormones and how to treat them properly. They literally run the whole female system(estrogen alone over 400 receptors) and when they are imbalanced so is everything else.....its such a simple idea to me just dont understand why the docs dont get it? (Oh, probably because most of them are men and they can take a little blue pill and problem solved) Sorry if I sound jaded.....sigh.....

Bren

Hi All!

So I am having a weird symptoms since starting my bisoprolol beta blocker 5 days ago......I have a really horrible time with side effects and have been fighting tooth and nail against taking them but I have been having irregular heart rythmns so my Dr says not being on one is no longer an option. Here is the thing though; every time I take a dose I have major heat flushing and night sweats.. and then cycle into cold chills....I know it has to be related because it wasnt happening before. I also find that my veins ache especially in my hands, arms and feet. What systems in the body besides vascular does Beta Blockers affect? Do they effect hormones at all? Or could this be an MCAD thing? (I am still waiting for official diagnosis on that)

Has anyone ever experienced symptoms like this while taking a beta blocker? I just cant figure it out? Also I have to take it a night because of the fatigue and nausea it causes even on a 1/4 tablet

Thanks for any input!

Bren

I can have perfect HR and BP and feel absolutely horrible!! I guess that would be the dysautonomia part....I always thought I would be cured if I could get my HR and BP under control but that is so far from the case My doc is always excited when my vitals are normal but I tell him I still feel like passing out....explain that!

Bren

Claire

Not sure if this helps but my auto doc diagnosed me as the following mild POTS with severe Orthostatic Intolerance, moderate dysautonomia and highly elevated norepi catecholamines and elevated BP baseline and standing....although I can present with some hypotension when very hypovolemic. What he said to me was my POTS is not as severe as the Orthostatic Intolerance(that is the biggie!) they are 2 different entitities apparently. Maybe your docs are trying to say the same with you? Mine says POTS is a syndrome not a true diagnosis it is a symptomology of an underlying cause like the OI or possibly MCAD....does that make any sense or did I just confuse you more?

Bren

I have been on lorazepam for 3 years due to this illness....initially because I was misdiagnosed with anxiety in all of those years I have never gone over my prescribed dose of 1mg and usually only take half of that.....I also recently found in doing research through Dr Afrin that often benzos are used as a mast cell stabalizer treatment for MCAD.....this for me may explain why this drug has treated so many of my physical symptoms it has no indication for treating. Sometimes we are prescribed the right drugs for the wrong diagnosis either way I dont plan on stopping it anytime soon and my Dr's are ok with that.

Bren

Hi Sue

I get the exact same type of episodes and that is why my docs are now pursuing MCAD...they think it could be like an anaphylactic episode maybe...... although when they first started happening my auto doc said they were storms....my para and sympathetic systems fighting it out.....either way they are not fun!!! I used to crash so hard during the cold phase my hubby would have to put me in a warm bath to bring my core up.....hang in there...hugs

Bren

Thanks Issie, I may look into the progesterone cream in the future

Katie...thats exactly how I feel right now....I know my hormones are whacked out, between the chronic cysts, sudden acne, hot flashes, feel like I am 16 again I think I am going to give the Progesterone pill I try....things will either get better or worse and atleast I can stop it any time

Thanks girls

I have been diagnosed with POTS/ severe Orthostatic Intolerance, moderate Dysautonomia, beta hyperadrenergic sensitivity, Hypovolemia, Raynauds Syndrome, Chronic Migraine Syndrome, IBS, severe allergies and now suspected MCAD/ Mast Cell involvement, suspected Chronic Fatigue ( but who wouldnt have fatigue with this list

Bren

Kalamazoo....why did your Dr say its unsafe? usually Progesterone is considered safe because it doesnt have the more dangerous side effects like estrogen ie DVT, etc....just curious?

Issie

No when I had the surgery they didnt find any endo....I actually had adenomyosis? my uterus was fibrous and enlarged...similar to fibroids only its in the lining of the uterus therefore hysterectomy is the only option. I still have my ovaries but have literally experienced nothing but problems with them since the surgery....I very strongly feel this is the culprit for my MCAD and POTS onset.....I cannot take estrogen as my mother had breast cancer....the cysts are causing horrible issues on top of POTS so i think I have no choice but to try the pill....my Dr does not believe in bio-identical hormones

Bren

I said dizziness...but it is more the constant sensation of feeling off kilter all the time hard to explain

Bren

Hi all

In 2008 I had a partial hysterectomy and kept my ovaries....not long after that I became ill with POTS. Over the last year my symptoms have been getting more and more difficult and I am constantly getting ovarian cysts. My doctor does not really think there is a direct relation with hormones and POTS but I beg to differ because I can feel it. The only pill she is willing to try me on is Progesterone (Micronor) to see if it will help with the cysts and any POTS symptoms.

Has anyone ever tried this pill since having POTS or for cysts? Pros? Cons?

I appreciate any input!

Thanks

Bren

Me too!!!! Anytime I raise my voice, laugh or anything like that I have that sensation....now when I do it my heart is actually skipping beats....scary!! I dont know why it happens.....maybe it is causing an adrenaline release or a vagal response?

Bren

I couldnt cope with the side effects of midodrine either....I have hyper POTS and it made the hyper stuff way worse. Have had much better luck with Florinef and my MCAD meds I hope you find something that will work for you Rama...its so trial and error.......

Bren